Yesss!! I need tips on what to keep in the car. One time at work, by the time they finally allowed me to leave because I couldn’t think or voluntarily keep my eyes open because the light hurt, I couldn’t even look at my phone to call for help. I sat in my car for 2 hours “napping?” feeling frustrated, hopeless, trying not to let myself cry and make the migraine worse. I don’t get attacks that severe very often, but a car kit would definitely come in clutch.. I’m out and about very often and I have a lot of scent triggers.
I purchased a car console organizer to keep above my pillows on the bed. It has two cup holders and three separate compartments. I use it to keep my puzzle books, pens, pencils, tablet, weekly med box, headache meds, wipes, and anything else I use on a regular basis while in bed. I have my charging cords threaded through the snaps on the front of the box so I don't have to hunt for them all the time. This organizer is by far the best purchase I have made!
I have a collapsible stool that I take when im going to be going to events at school. You're totally valid for needing a seat in the store. I use the riding carts in the store so i will go out of my way to find a place with a riding cart.
“I could lick my lamp if I want..” omg hahaha. I am so thankful for you. I had no idea I had POTS until I found your channel. I have complex migraines also and every time something weird was going on with my body they blamed the migraines and ignored me. I watched your videos and brought up POTS and they tested me for it. Turned out I do have pots and complex migraines and a blood disorder thrown in there. Thank you for pointing me in the right direction
The point about causing noises being less triggering makes so much sense to me. I have misophonia (certain noises, especially repetitive noises, trigger negative emotions such as anger, sadness, anxiety, etc) and/or possibly a full sensory processing disorder. However, if I’m the one making the noise, I don’t trigger my misophonia.
I have been known to not eat meals because my misophonia is triggered by the sound of chewing...even my own. If I could live on a liquid diet I would, but my GP said a hard no to that.
When I was in college (decades before diagnosis), I kept wondering how my roommates would dry their hair and put on makeup while *standing up*! I knew something was wrong with me, but I kept thinking my inability to stand for more than a few moments was some strange lack of fitness. But here’s the REALLY strange part: I thought that despite the fact I was a collegiate track competition runner, and a sponsored skateboarder. I could go out (if it was not hot) and do all these hard things, yet still thought I was “unfit” because the thing that made me sick was *standing.* Another odd thing was I usually *could* stand for an hour on stage giving a big keynote speech. When I got my Whoop strap it became clear why… my nervous system response to stage fright tricks my body into the whole adrenalin thing and my Whoop will say something like “workout detected…” 😜
I take a camping stool with me to the school playground, if I'm feeling particularly bad it's a full camping chair, people don't seem to care as I have previously turned up in a wheelchair. My best tip would be, do you. Don't think about what others will think, just do whatever helps, your comfort and safety is much more important than what others think xxx
I'd love to see a go bag video! I'm frequent going to the ER, so I keep a small overnight bag in my bookbag that has deodorant an extra charger and underwear since the hospital will usually give you everything else.
Your camping tripod is way less embarrassing than me needing to sit in the middle of Walmart with a toddler I'm adding it to my list!!! I use a shower chair as the heat can make me fainty or trigger migraine/vertigo! Sitting in the shower changed my life!!!
Naptime is required at my house. If my mom, dad, or sister are here they will lay down and take a nap too. My 6 year old has to lay down while the 3 year old and I nap. Momma needs at least an hour.
For home: My husband has turned all electronics to be as quiet as they can possibly be, that includes keyboards. We have LED lights for in the bedroom that change colors so I can set it to a color that isn't hurting my head. We have black out curtains everywhere in the house and my husband put up curtains to block off the kitchen area from the rest of the house so I can't smell all the foods cooking. I have my abortives with me everywhere I go. Ice pack patches in the fridge. Noise cancelling headphones if the noise gets too loud. For work(I work at a mental health facility on a giant campus with many buildings): I have transition glasses with uv protection and screen protection on them to help adjust to the bright sun and the computer screen. I have been VERY vocal with coworkers about vanilla and coconut being a no go around me so its usually not worn by anyone. The air conditioning/ heat is controlled by me so I'm not getting too hot/cold when I shouldn't be. I have ice pack patches in the fridge at work if my head gets really bad. My work keys are kept in my pocket so they aren't jingling everywhere. I carry my abortive's with me everywhere. I have a diffuser in my office and use an oil of my choice that doesn't hurt my head(usually lavender and something else). Everyone is patient when i'm having aphasia or not 100% like normal.
I don’t have migraines or anything, but I do get nauseous often and extremely easily, and the curtains around the kitchen thing sounds like a life saver... definitely bringing it up to my husband when we move to our new home. Thanks!!
Work tip: (I have POTS and I am a cashier) I asked my boss is I could have a stool while I work. Basically, anytime I would just be standing at the cash register, not moving around or anything, I sit down. It helps me have a lot more energy later in the day. And I love the idea about keeping salt packets in your purse!
Anyone who has spent time in our house knows where my medications are kept, how to give me my sumatriptan, and where our cold water/ice bag is for if I get a migraine and my husband isn't around to help. Interrupted sleep is one of my triggers, so if my husband goes to bed too late he sleeps on the couch. It's not something I ever asked him to do, but it means alot to me that he does it. We also have an understanding now that my migraines mess with my memory. "I don't remember" is always an acceptable answer, and will always be replied to with a retelling of a story or fact. No frustration or anger involved in either side. We also only plan on one "going out of the house" activity per day, with the knowledge I may need a nap afterwords.
So I am still in the learning stage, and yesterday, I thought I could just muscle through a closed MRI with claustrophobia. I made it 20 seconds. He didn't even get the machine turned on. I don't know how this fits in here, but I guess just accepting things and being willing to know that you don't have to be superman all the time! Tuesday I drive to their open machine which is just farther away and I could have scheduled that the first time!
I have a six can mini fridge in my bedroom that i keep my ice hats (its exactly what it sounds like, it is an ice pack that is a hat) in it. I have a few of them so one is always cold. It seems excessive but my migraines effect my balance, my coordination etc. I also frequently wake up at all hours of the night in the middle of one, so being able to have my ice hat in reach without having to get out of bed is game changing. I also keep water and meds on the night stand next to it an a low lumen stick up light on the side of it so i can see what im doing but dont have to kill my eyes or wake my husband. It's not high maintenance to be prepared and make your life easier when you have a n illness that takes it over regularly and without warning. Never be ashamed to do what you need to in order to be well.
I'm so thankful i found your channel. We have so much in common, and it's really comforting to watch someone of a similar age struggle with similar health issues. It can feel very isolating when it seems everyone around you is "normal". I wish you lived close, bc we definitely would be great friends I think.
Home stuff: I have a mini extension cable that sticks up between my two sofas so I can plug things in without reaching behind things. My heated neck warmer is usually plugged in there or by my bed. My partner does stuff like carry my laptop up and down stairs, plugs things in for me, and he has the wonderful duty of cleaning our cat's litter tray. We found that the up-downs for doing litter tray was an absolute nightmare for my POTS and it's not like we can have the litter tray any higher up without confusing the cat. Work stuff: I'm fortunate to work 4 days a week, so I have Wednesdays off for appointments, medical admin and I try and have a decent screen break too. Thanks Jen - loved hearing about how you and your husband make accommodations for you as it makes me feel more normal for doing the same 💞
My work modifications: 1. I keep ginger in the fridge at work. 2. I keep the brightness of screens down as much as possible. 3. My work usually requires my to drive a lot and working outside the office, so whenever I feel like I’m getting a migraine, I have to leave, so I can drive myself home. 4. I have a job where I usually work alone, so I don’t have to schedule a ton of meetings etc. which makes me more flexible. 5. I do things that require a lot of brain power early in the day, since symptoms get worse during the day.
Don’t be embarrassed by what you do to make life more manageable for you. I know it’s hard, but if people judge you for self-care, that’s all on them. 🙂
I just use my hand as a cup when getting water to rinse my mouth but I know a lot of people who keep a cup by the sink, I don't actually know anyone who would try to stick their head under the tap... maybe that's a USA vs Australia thing?
So interesting to watch this after I watched your newer stuff where you found you really should avoid salts. Im so glad you made so much progress on your dx from this video to now.
My random tip is beef jerky. I keep it by my bed and when I have a migraine or a low blood pressure time, I can snack on it and be sure that I'm eating some food that doesn't make me nauseas, has protein and also has a LOT Of salt which will help boost the blood pressure.
I’d love to see a video of what’s in your go bag. I know it won’t all be relevant to me but it’d be really helpful to get some ideas I hadn’t already thought of.
I also try to avoid bending down or over as much as possible. I always try to have a drink on hand when out and about in case I need to take medications. I use a shower chair or take a bath and usually do either on a day when I don’t have much else going on. I use a motorized cart when at bigger stores like Lowe’s. I do my makeup in bed with my iPad or phone as my mirror. Depending on how I am feeling I will try to have a rest day inbetween outings.I will try to wear something cool if it is extra hot and something that is loose on my stomach if it is extra bloated. I usually will lay down for a bit after an outing and sometimes before. I have to make sure I have enough oxygen/grab a new tank if needed before going out. Those are some of my main ones. Also the camping chair is a great idea I will have to look into.
Yes to the ‘Go Bag’ and ‘Workplace Modifications’ videos. I’ve been largely teaching from home this year, but teaching on-site with Chronic (Vestibular?) Migraine has become a real challenge in the last two years. I’m also totally fine when I’m moving, but the moment I stop, that whooshing feeling just washes over me. You should see me once I park the car after an hour of freeway commuting - ugh! Great video, Jen! Thanks. 😊
I love the candle veto power idea. I'm very scent sensitive and anything too strong will cause a headache and I won't be able to sleep. I have to be really careful what laundry detergents I use on my pjs and pillow cases and blankets bc of this. I also get really anxious with loud noises so ear plugs are a must
I think that's just awesome for you and for your family that you already know your body and symptoms enough that say hey i've got to listen to my body now so later i can enjoy my family and be there for them instead of pushing yourself to your breaking point, good for you👏👏👏👏👏👏
Ohh thank you so much. It took time to learn (and effort to practice) because I'm NO GOOD at sitting down. But you are right on point - this is how I can be there for my family.
@@MommingwithMigraine you're doing a great job, getting your baby potty training early, finding new ways to adapt , typical people may not understand how much more effort you have to put on to make every aspect to your life work, i have an autistic son, we have to constantly adapt to make sure he is thriving and many times people don't understand... they only want people that fit a criteria, i'm not apologizing for my son and you should never apologize for your medical condition🥰sorry big comment 🤣
It’s crazy thinking about all the adjustments we make for our chronic diseases… I’ve been dealing with chronic headaches/migraines for close to 30 years now - started around 11 - along with chronic back pain. I have 2 kids and was a single mom for large extensions, along with living abroad with no family close by. I thought due to the single mom experience, and having had chronic pain for so long, that my life work arounds are limited but yep, I have an extensive list as well 😅. I had light bulbs removed at work (luckily working from home now), no dairy, gluten, alcohol, limited meat, all screens are always set to super low light, warm light and I have some red migraine glasses I absolutely love. I have been going to chiropractor and massage therapy for years now, all sorts of neck and back massage tools at home, ice mask, ice head wraps, essential oils, etc. I find it helps most if I can sense a migraine early on and then take extra care of myself with plenty breathing breaks lying down (incl. essential oils) also I’ve been experimenting with the mind - body connection, with positive self-talk and affirmations. Soooo excited I found your channel 🤩. I also did EC with my son. **Edit: super important for me is getting enough sleep, regular meal schedule and of course PLENTY hydration. All the best to you all ♥️
I totally have a rollator with a seat specifically for the still bits where I need to sit. It also helps with my EDS stuff but that seat changed my life!
I've been looking at getting one as I have GHSD (possibly hEDS) and currently a lovely herniated disc as well. I've gone half way by taking a camping stool or seat when I know there's a lot of standing involved
I've got a rollator from when I had knee replacement, I will not let that baby get away from me. It's been tremendously helpful! With my knee and back, sitting on that rather than lower on a camping stool is so much more ideal. If I got to about a foot off the floor, I'm going on down there. It can't be helped..
Now I'm curious about the travel bag. With reflux, colitis, panic attacks, migraines (with fevers), raynaud's, chronic back pain, and allergies, I tend to get dubbed the walking pharmacy in the office. I worked with 2 young ladies that have panic attacks so slipping a note to the receptionist I felt like I was going to have an attack incase it got to the point breathing was an issue was so nice. The other girl asked because she could see signs without my having to say anything. So much of the up/down bendy avoidance here goes for my low blood pressure and reflux. It's always interesting to see what modifications others make to see if there's something else to try or where issues overlap. I'll pose the question since my migraines weren't as bad in college, what work arounds does anyone use for studying? For the major portion, I printed the online textbook double sided to reduce the weight for my back and avoid the screen for migraines, but it's really built to be done on a pc. The smaller courses (about 24 hours of courses) can't be made into paper books. Last year, I triggered some migraines even with the screens at the lowest settings.
I really like the website naturalreaders when I need a screen break. I copy my readings in and then it'll read them to you. It's also a super helpful editing tool because you notice typos more when read aloud.
Hi! Former special Ed teacher and now a first wave covid long hauler going into I.T. (working towards digital accessibility specialist). Adaptive technology can make a huge difference. Have you tried text to speech, and/or dark mode (migraine + less cognitive load for some), and/or an iPad on a stand? Your uni/college should be able to get you OCR PDF textbooks (when you have proof of purchasing a new copy of the book) or will scan it for you. (You need to go through registration with your school’s disabilities services first.) Alternatively if your printing out your texts anyway just scan then to OCR (optical character recognition) PDF format. Apple products have the best text-to-speech and other adaptive tech built in. iPads with Apple Pencil and the Notability app to organize notes works really well. iPads are much lighter than a PC laptop- even the iPad Pro with a Keyboard. Notability lets you set the paper colour. With some tweaking you can get soft light grey text on black. Larger print is good too. For my migraines and long haul covid I set up an Apple smart home with two HomePod minis and smart lighting (Phillips). All I have to do is say “Hey Siri set bedroom light to pink/turn off office ceiling light/etc”. Total game changer for my migraines!
A add-on on other program that can read the text to you could be helpful for studying. That's how I got through my online courses, living with migraines and dizzy spells that happened when i was sitting up. My blue tooth headset let me lay down and listen. I could also sit at the screen and listen and read along for sections too and that helped as well.
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Please do a video on your go bag! I don’t have migraines as common or as bad as yours but I do get them. A go bag sounds like a really great idea that I’d love to implement and would love to see what you have in yours to get ideas for mine!💜💜
If you decide to lick your salt lamp you better video it...Lol! I'm with you on the noise stuff...it's so much better if I can control the volume to an extent. I have a spine injury and can't bend to pick up stuff like I used to so I have grabbers (Mobility Aid Reaching Assist Tools) all over my home. I also have scent triggers so I carry a boom boom stick with me to help alleviate the troubled scent. I also have little trick I used back in my X-ray days when I worked at the hospital spraying my favorite scent into my cleavage and if a scent triggered me I could quickly slip my fingers where I sprayed my cologne and hold them to my nose. It gave me a few minutes to escape the triggering scent (just playing a trick on my mind maybe). I know it's odd but it seemed to help.
i remember having to sit down to cut vegetables when my chronic illness was really bad.. and when i would go to the supermarket 5 mins away i had to sit down on a bench to rest my legs when i got there before going in to do my shopping. standing in the queue at the end was the worst part. then i would sit down on the bench again at the end before walking home. but i made it and that's what mattered!
I have magnetic charging cords! I have 2 by my bed, one for phone one for tablet. BUT! All my devices have the magnetic port and any device I have I just need to have the cord! I have a glass desk with metal trim next to my bed, my cords just go on the side and are there when I need them. Downstairs in the living room I have 2 cords and a metal rim around the table next to my chair. (I had a pack with like 6 ports that I put in my devices and around 6-9 cords. 2 are really small I don't use them, 4 are 3 feet, 2 are 6 feet. Anywhere I go, I only need to bring one cord to charge all my devices! It's the best thing ever and is probably cool even if you don't have health conditions!
I was planning on searching for a video like this and you just- poof- showed up in my recommendations. I've been struggling with extreme dizziness and nausea for months and just recently learned I have damage to two parts of my right inner ear, so the positional tips were particularly handy for me. I'm glad you're still able to get out and about. I typically only leave my house for doctors appointments and I get panic attacks every time😓
For migraines I have a emergency kit on each floor of my house including the basement. With sunglasses pain pills. The two floors they have bedrooms on them have masks that way if I just have to pick a kids bedroom and lay down I can. All the bedrooms have blackout curtains whether they need them or not. I also have a cane on each floor because I have MS which can cause issues with mobility. I also have an Apple Watch that has fall detection and will alert my mother and EMS. My husband travels too much for it to alert him
I definitely want to see what’s in your go bag and the accommodations you made at work!!!!! I need to make a go bag for myself. I sometimes have migraine attacks at work and it isn’t safe for me to drive home. I don’t usually have anyone to come get me and I live 30 minutes away from work. There have been times where I’m so drained from the pain that I can barely stay awake so driving is a no go
I would have a pillow and blanket in the car, and maybe an inflatable thing that can turn the backseat into a bed. I would also have in the car window covers for all the windows. In the bag I would carry an abortive, one to two doses of daily medications, comfortable clothes that I could sleep in. these could also be in the car, enough food to have at least one meal, water or other drink of choice, something to help with nausea like ginger candy, and anything else I may need if I have to spend an evening/night in the car. It's about being comfortable and caring for yourself and dealing with symptoms. Keeping track of what you use during an attack may be helpful in building your bag.
The dishes is the same for me, but also the smell of dirty dishes is very triggering for my migraines. Over stimulation is a huge trigger for me. I can't multitask anymore which has been a huge change since daily migraines or constant. I need a recovery day for an afternoon of being on my feet. Especially, if it's medical stuff. If I go do labs, that's what I can do for the day. My asthma is allergy induced and stressed induced. I have to be so careful lately about the days I can go outside the house. Air quality, pollen index, super windy, any of those and I'm inside. I need to start doing the strobe warnings! Shower Bench, vanity stool (cushioned) in front of full length mirror for makeup, brushing teeth, taking medications, break while doing my hair = vanity stool. Life changer
I was just about to say I hope she make a video about what's in that basket and boom you said you're going to, YAY!!! I know you feel embarrassed about the chair for sitting in the store but please don't, I'm also dealing with what you are in addition to that I'm dealing with problems with walking, knees giving out and staggering like I'm drunk so I have to use a walker for when I go out for safety. I don't drive so this is also how I'm able to do groceries and carry them home on the walker and still have some sense of independence. The noises and light bother me (I have special tinted glasses for that I wear indoors as well to help) as well and the bending is a huge issue for me as well. Here in Canada it's also Brain Injury Awareness month as well as Migraine Awareness month both of which I battle with along with possibility of POTS and other chronic illnesses. Also the scent thing is something I have absolutely no control over when I live with a house full of roommates and they all get their own stuff. Hoping I'll be able to get my own place soon but need to wait for the housing list to get a place I can afford.
I use the app clue to track my symptoms, it's made for your period but I use it for both. I have very bad ADHD and a terrible perception of time so that way when my doctor ask me the frequency of my symptoms I do not have to guess. My bed was made by a friend and it is at waist height, so I don't have to bend to get in. He also put plugs into the headboard so I don't have to go look on the floor for my wires they are behind the headboard. Flexible ice packs. My chiropractor is my best friend (not really but you get the point),
Wow. That's awesome that you're able to walk just fine Jenn! :) I have issues if I stand still for a long time but I'm thankful that walking doesn't cause issues..and YES please do the work modifications :)
I need to work on advocating for myself. Some of these things would be really helpful for me, but I feel weird about calling attention to my migraine triggers/symptoms. One thing I do do is carry my blue light filter glasses with me everywhere. They're great for movies/driving at night. And something I would like to do once I start living alone would be to put nightlights around my apartment so when I'm very photosensitive, I could keep the overhead lights off but still be able to get around.
I have fibromyalgia, migraine, an autoimmune illness, and ADHD. All my meds + some fidget toys + a couple snacks are in a box right next to my bed, plus a tigerbalm tin. I also use a pill organizer because otherwise I can't remember if I've taken my meds. I have tons of ice packs so there's always one already frozen. Heating pad plugged in by my bed. Super long phone cord + your phone cord hack w/ the binder clip. Advil in my car, and in my bag, and in my room, and on the first floor of my house. I try not to plan more than one "going out" thing a day, and avoid planing things 2 days in a row when I can, depending on how triggering I expect the plans will be for my fatigue. Almost never make appointments/plans before 11 am, so I can sleep in (chronic fatigue). Hoping to get a rollator with a seat, but might go for the camping chair first! Long body brush for the shower bc bending my leg to wash my calves/feet is painful for my hips. I also used to have an icyhot patch in my wallet when I was in school lol. Oh, and I have loads of lamps bc that's easier than overhead lights when I'm migrainey but still need to see.
As as fellow POTS sufferer I eat scoops of Vegemite when I get POTS-y (I'm aussie though and you guys probably find that grose but being brought up on it is amazing) but one thing that you might want to try is miso soup.... in particular those INSTANT MISO SOUP sachets just straight... super salty... I always carry them in my handbag... and also sushi fish/packets of soy soy sauce. I got sick of taking salt tablets so I got creative 🤣 having POTS episodes at the sushi train I just ask for lots of miso soup and like a bowl of soy sauce skip the plastic if I get dizzy ...I get the weirdest looks but it's better than fainting 🤷🏼♀️
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Hi Jen!!! Teen with migraines and HSD (form of EDS) here. Mine are usually 1-2 days long every week or so. How do you deal with guilt of not being able to spend time with your family during a migraine? Love your videos btw!!!
Yes I'd like to see a video on what's in your go bags and modifications you made when you worked in the lab. Btw, I think that you work hard every single day-not all work has to be paid work.
I'm fortunate to have only had a handful of episodic migraines. They are of the light sensitive variety, so If it's not practical for me to stay in a dark room, I wear non prescription sunglasses and ask my family to dim the lights. I will wear them in the shower if I am taking one that day. The lights in the bathroom can't be dimmed and they need to be on for the person helping me with my shower, so sunglasses are a good compromise
I'm sure this will save a life by sharing this information and introduce to you DR AZAKA CURE REMEDIES on TH-cam who cured my disease which I'll rather be private about, I was cured from HPV with his herbal medicine, I wasn't really expecting a herbal medicine to be as effective as I experienced, my test results proves that I've been cured from HPV , and you can as well Contact him and be free from any kind of infections or diseases , I'm pretty much certain you'll all thank me later 😍
Hi Jenn don't have POTS or the migraines like you. But I do have migraines I have learned dill pickles mostly the juice will help me that is. Growing up I hated dill pickles. But when I was pregnant ( 24 years ago) with my daughter I craved dill pickles and the whole 9 months I didn't have not one migraine and just learned that dill pickles juice helps so now I keep dill pickles in my refrigerator. Just thought I would share that with you incase you want to try. Because a regular migraine is normally because you are dehydrated and pickle juice levels it out.
I use FL 41 tinted lenses for computer use and as sunglasses. I am extremely light-sensitive with my chronic migraine. The sun is one of my worst triggers.
Such a good laugh at "used to do Crossfit, now shaky calligraphy". I took up painting my nails instead of calligraphy, but I totally get the feeling. Cannot handle any up-down business with exercise any more. (No POTS, just CSF/intracranial pressure and migraine issues.)
I’m really lucky and I have a job where I’m able to take 2-3 20 minute naps throughout my workday, otherwise I wouldn’t be able to work. I’ve also recently started - wearing sunglasses pretty much whenever I’m out in daylight hours and it’s not overcast - switching from videos to podcasts to reduce screen time (although I do still miss the channels I don’t watch anymore) - scrunchies instead of elastics so it doesn’t pull as hard - leaving my devices set to “night light” (ie less blue, more yellow) 24/7
That is so funny that you mention singing to yourself when you go into a migraine! I started noticing that I do the same before I go into my (suspected) seizures. 😂 Is that a thing?
I have *such* a rough time with FOMO so I have a hard time telling the people around me that I need to go lay down and usually they are the ones telling me that I should go lay down. Also I am the same with being okay POTS wise with walking and moving but if I’m standing still it’s game over. Most people assume when I use my wheelchair that it’s because I can’t walk or pass out but really it’s such a hodgepodge of reasons including balance issues, fatigue, instability, pain, and yes POTS too! I love Life360 and I’m sure my mom loves it even more especially when she is up in Chicago with 2 adults kids with POTS under two different roofs I do my medications through my feeding tube sitting on my toilet lol and I used to have to use so much effort to crush the pills and suck it up and another tubie taught me to just put the whole pills in a syringe, suck up some hot water and then by the time you need it, the pills are dissolved and ready! No more wrist/elbow/shoulder subluxations! I also highly recommend multiple heating pads if you can afford it especially if you live in a multi story home. And I just bought the coolest thing ever which is an ac & usb car converter so I can plug my heating pad in the car 😲🤯
My bestie will just plop herself down on the floor and then use her service dog for dpt and to get back up. I might suggest the camping chair for her. But she also has heds and her purse is already heavy.
I'm sure this will save a life by sharing this information and introduce to you DR AZAKA CURE REMEDIES on TH-cam who cured my disease which I'll rather be private about, I was cured from HPV with his herbal medicine, I wasn't really expecting a herbal medicine to be as effective as I experienced, my test results proves that I've been cured from HPV , and you can as well Contact him and be free from any kind of infections or diseases , I'm pretty much certain you'll all thank me later 😍
I just have a grabber in my bedroom, in a closet downstairs and a foldable one that’s usually in the bag I always have since reaching things on the floor from a wheelchair is hard, especially since my chairs inside the house don’t have footplates at the right height so I can’t put pressure on my feet to brace myself and stay balanced
I have explained to my pupils why I sometimes have to wear earplugs or sunglasses in class for my migraines. I try to have a nap every day after school and on worknights I go to bed at 9pm latest. Hot temperatures are very bad for me so our headmistress is using me as an excuse to have ACs installed throughout the school 😂 I have to watch my water intake religiously. My dentist also recommended one of those plastic thingymabobs that people who grind their teeth use and it really helps me. Weirdly enough, long showers alleviate the pain while baths make it so much worse.
I'm so sorry you are feeling embarrassed about talking about using a camping chair. I don't quite understand the embarrassment. Maybe it's all the times I want to Comic Con and wished I had one (or was happy I scored one for free) for waiting in lines.
Yes I would love to see what is in your go bag and I would also like to know what kind of dr. I have to go to to get checked for Pots and what does the test include?
I turn the lights off in the office and my computer monitor onto greyscale and low brightness when I have a migraine at work and it gets to a certain intensity. My brightness normally is already lower then everyone else on the computer.
love your videos! i get migraines but thankfully they're not chronic, still have no clue what triggers them though but they definitely disrupt everything in my life. How long did it take you to figure out your triggers? i'm sure that's such a complicated question. btw i didn't find that shirt but i found a different CF one, definitely not as great as yours but i settled anyway. Would love a video about changes in the workplace! I work with someone who has different medical issues and she calls out way more frequently than any typical employer would put up with, i feel super guilty for getting so frustrated about not being able to count on her. would love to know if there are different things i can try to recommend to our boss about things that could be potentially helpful for her
I have "blackout" but the Doctors say it is "sleep devilation". If I don't sleep for eight straight hours I will have them on that day. But, I have "blackout" when I'm in a pool and dizzness when I drive over a bridge or open space mountain area. I fear taking a shower!!! The change in room temperature and the weather effect my sleep patterns!!! Do you have problems with "low" blood sugar? Thank you for sharing!!!
I’m really interested in hearing these. I’m trying to figure out how I can be independent and still safe. I’m hoping I’ll be able to live independently in a years time for uni but at the moment it seems incredibly out of reach. I honestly don’t know how I’m going to manage it.
Everyone is different but you will learn your triggers and your prodrome signals and how long you have between the onset of prodrome and the full attack. It takes time, but you will get to know your migraines very well and you will be able to have your independence.
If y’all want to see Jen do a video talking about her migraine bag on the go, like this comment and maybe she’ll do it if she gets a lot of likes!
Yesss!! I need tips on what to keep in the car. One time at work, by the time they finally allowed me to leave because I couldn’t think or voluntarily keep my eyes open because the light hurt, I couldn’t even look at my phone to call for help. I sat in my car for 2 hours “napping?” feeling frustrated, hopeless, trying not to let myself cry and make the migraine worse. I don’t get attacks that severe very often, but a car kit would definitely come in clutch.. I’m out and about very often and I have a lot of scent triggers.
I purchased a car console organizer to keep above my pillows on the bed. It has two cup holders and three separate compartments. I use it to keep my puzzle books, pens, pencils, tablet, weekly med box, headache meds, wipes, and anything else I use on a regular basis while in bed. I have my charging cords threaded through the snaps on the front of the box so I don't have to hunt for them all the time. This organizer is by far the best purchase I have made!
I have a collapsible stool that I take when im going to be going to events at school. You're totally valid for needing a seat in the store. I use the riding carts in the store so i will go out of my way to find a place with a riding cart.
“I could lick my lamp if I want..” omg hahaha. I am so thankful for you. I had no idea I had POTS until I found your channel. I have complex migraines also and every time something weird was going on with my body they blamed the migraines and ignored me. I watched your videos and brought up POTS and they tested me for it. Turned out I do have pots and complex migraines and a blood disorder thrown in there. Thank you for pointing me in the right direction
The point about causing noises being less triggering makes so much sense to me. I have misophonia (certain noises, especially repetitive noises, trigger negative emotions such as anger, sadness, anxiety, etc) and/or possibly a full sensory processing disorder. However, if I’m the one making the noise, I don’t trigger my misophonia.
I have been known to not eat meals because my misophonia is triggered by the sound of chewing...even my own. If I could live on a liquid diet I would, but my GP said a hard no to that.
@@celticphoenix2579 ,
When I was in college (decades before diagnosis), I kept wondering how my roommates would dry their hair and put on makeup while *standing up*! I knew something was wrong with me, but I kept thinking my inability to stand for more than a few moments was some strange lack of fitness. But here’s the REALLY strange part: I thought that despite the fact I was a collegiate track competition runner, and a sponsored skateboarder. I could go out (if it was not hot) and do all these hard things, yet still thought I was “unfit” because the thing that made me sick was *standing.*
Another odd thing was I usually *could* stand for an hour on stage giving a big keynote speech. When I got my Whoop strap it became clear why… my nervous system response to stage fright tricks my body into the whole adrenalin thing and my Whoop will say something like “workout detected…” 😜
I take a camping stool with me to the school playground, if I'm feeling particularly bad it's a full camping chair, people don't seem to care as I have previously turned up in a wheelchair.
My best tip would be, do you. Don't think about what others will think, just do whatever helps, your comfort and safety is much more important than what others think xxx
I'd love to see a go bag video! I'm frequent going to the ER, so I keep a small overnight bag in my bookbag that has deodorant an extra charger and underwear since the hospital will usually give you everything else.
Your camping tripod is way less embarrassing than me needing to sit in the middle of Walmart with a toddler I'm adding it to my list!!! I use a shower chair as the heat can make me fainty or trigger migraine/vertigo! Sitting in the shower changed my life!!!
Adult naps are so underrated😬 I have to nap every day for like at least an hour
Naptime is required at my house. If my mom, dad, or sister are here they will lay down and take a nap too. My 6 year old has to lay down while the 3 year old and I nap. Momma needs at least an hour.
For home: My husband has turned all electronics to be as quiet as they can possibly be, that includes keyboards. We have LED lights for in the bedroom that change colors so I can set it to a color that isn't hurting my head. We have black out curtains everywhere in the house and my husband put up curtains to block off the kitchen area from the rest of the house so I can't smell all the foods cooking. I have my abortives with me everywhere I go. Ice pack patches in the fridge. Noise cancelling headphones if the noise gets too loud.
For work(I work at a mental health facility on a giant campus with many buildings): I have transition glasses with uv protection and screen protection on them to help adjust to the bright sun and the computer screen. I have been VERY vocal with coworkers about vanilla and coconut being a no go around me so its usually not worn by anyone. The air conditioning/ heat is controlled by me so I'm not getting too hot/cold when I shouldn't be. I have ice pack patches in the fridge at work if my head gets really bad. My work keys are kept in my pocket so they aren't jingling everywhere. I carry my abortive's with me everywhere. I have a diffuser in my office and use an oil of my choice that doesn't hurt my head(usually lavender and something else). Everyone is patient when i'm having aphasia or not 100% like normal.
I don’t have migraines or anything, but I do get nauseous often and extremely easily, and the curtains around the kitchen thing sounds like a life saver... definitely bringing it up to my husband when we move to our new home. Thanks!!
Work tip: (I have POTS and I am a cashier) I asked my boss is I could have a stool while I work. Basically, anytime I would just be standing at the cash register, not moving around or anything, I sit down. It helps me have a lot more energy later in the day.
And I love the idea about keeping salt packets in your purse!
Anyone who has spent time in our house knows where my medications are kept, how to give me my sumatriptan, and where our cold water/ice bag is for if I get a migraine and my husband isn't around to help.
Interrupted sleep is one of my triggers, so if my husband goes to bed too late he sleeps on the couch. It's not something I ever asked him to do, but it means alot to me that he does it.
We also have an understanding now that my migraines mess with my memory. "I don't remember" is always an acceptable answer, and will always be replied to with a retelling of a story or fact. No frustration or anger involved in either side.
We also only plan on one "going out of the house" activity per day, with the knowledge I may need a nap afterwords.
So I am still in the learning stage, and yesterday, I thought I could just muscle through a closed MRI with claustrophobia. I made it 20 seconds. He didn't even get the machine turned on. I don't know how this fits in here, but I guess just accepting things and being willing to know that you don't have to be superman all the time! Tuesday I drive to their open machine which is just farther away and I could have scheduled that the first time!
I have a six can mini fridge in my bedroom that i keep my ice hats (its exactly what it sounds like, it is an ice pack that is a hat) in it. I have a few of them so one is always cold. It seems excessive but my migraines effect my balance, my coordination etc. I also frequently wake up at all hours of the night in the middle of one, so being able to have my ice hat in reach without having to get out of bed is game changing. I also keep water and meds on the night stand next to it an a low lumen stick up light on the side of it so i can see what im doing but dont have to kill my eyes or wake my husband. It's not high maintenance to be prepared and make your life easier when you have a n illness that takes it over regularly and without warning. Never be ashamed to do what you need to in order to be well.
I'm so thankful i found your channel. We have so much in common, and it's really comforting to watch someone of a similar age struggle with similar health issues. It can feel very isolating when it seems everyone around you is "normal". I wish you lived close, bc we definitely would be great friends I think.
Home stuff: I have a mini extension cable that sticks up between my two sofas so I can plug things in without reaching behind things. My heated neck warmer is usually plugged in there or by my bed.
My partner does stuff like carry my laptop up and down stairs, plugs things in for me, and he has the wonderful duty of cleaning our cat's litter tray. We found that the up-downs for doing litter tray was an absolute nightmare for my POTS and it's not like we can have the litter tray any higher up without confusing the cat.
Work stuff: I'm fortunate to work 4 days a week, so I have Wednesdays off for appointments, medical admin and I try and have a decent screen break too.
Thanks Jen - loved hearing about how you and your husband make accommodations for you as it makes me feel more normal for doing the same 💞
My work modifications:
1. I keep ginger in the fridge at work.
2. I keep the brightness of screens down as much as possible.
3. My work usually requires my to drive a lot and working outside the office, so whenever I feel like I’m getting a migraine, I have to leave, so I can drive myself home.
4. I have a job where I usually work alone, so I don’t have to schedule a ton of meetings etc. which makes me more flexible.
5. I do things that require a lot of brain power early in the day, since symptoms get worse during the day.
Don’t be embarrassed by what you do to make life more manageable for you. I know it’s hard, but if people judge you for self-care, that’s all on them. 🙂
When you switched sides after your licking salt lamp joke I thought you were about to go pretend to lick it😂
I just use my hand as a cup when getting water to rinse my mouth but I know a lot of people who keep a cup by the sink, I don't actually know anyone who would try to stick their head under the tap... maybe that's a USA vs Australia thing?
that intro got me fired up
Me: "I HAVE TO TELL SOMEONE"
Brain: "TELL TH-cam 😝"
So interesting to watch this after I watched your newer stuff where you found you really should avoid salts. Im so glad you made so much progress on your dx from this video to now.
Those little camping chair things are great, they are a POTs must have! I often sit on railings or other things if I have no where to sit
Love the "weird opener"
Absolutely had to come back to add: You're so funny! Love it :D
We also have the phone tracker thing as well
My random tip is beef jerky. I keep it by my bed and when I have a migraine or a low blood pressure time, I can snack on it and be sure that I'm eating some food that doesn't make me nauseas, has protein and also has a LOT Of salt which will help boost the blood pressure.
I’d love to see a video of what’s in your go bag. I know it won’t all be relevant to me but it’d be really helpful to get some ideas I hadn’t already thought of.
I also try to avoid bending down or over as much as possible. I always try to have a drink on hand when out and about in case I need to take medications. I use a shower chair or take a bath and usually do either on a day when I don’t have much else going on. I use a motorized cart when at bigger stores like Lowe’s. I do my makeup in bed with my iPad or phone as my mirror. Depending on how I am feeling I will try to have a rest day inbetween outings.I will try to wear something cool if it is extra hot and something that is loose on my stomach if it is extra bloated. I usually will lay down for a bit after an outing and sometimes before. I have to make sure I have enough oxygen/grab a new tank if needed before going out. Those are some of my main ones. Also the camping chair is a great idea I will have to look into.
No need to be embarrassed by anything. Learning what works for you is the most important thing to do. You do you🥰👏
Work tips please!
Yes to the ‘Go Bag’ and ‘Workplace Modifications’ videos. I’ve been largely teaching from home this year, but teaching on-site with Chronic (Vestibular?) Migraine has become a real challenge in the last two years. I’m also totally fine when I’m moving, but the moment I stop, that whooshing feeling just washes over me. You should see me once I park the car after an hour of freeway commuting - ugh! Great video, Jen! Thanks. 😊
I've sat on the floor at a store before, so the camping chair thing sounds wonderful!
Please do one on the go bag (and basket). I'm always interested in what helps others with their flareups.
I love the candle veto power idea. I'm very scent sensitive and anything too strong will cause a headache and I won't be able to sleep. I have to be really careful what laundry detergents I use on my pjs and pillow cases and blankets bc of this. I also get really anxious with loud noises so ear plugs are a must
I think that's just awesome for you and for your family that you already know your body and symptoms enough that say hey i've got to listen to my body now so later i can enjoy my family and be there for them instead of pushing yourself to your breaking point, good for you👏👏👏👏👏👏
Ohh thank you so much. It took time to learn (and effort to practice) because I'm NO GOOD at sitting down. But you are right on point - this is how I can be there for my family.
@@MommingwithMigraine you're doing a great job, getting your baby potty training early, finding new ways to adapt , typical people may not understand how much more effort you have to put on to make every aspect to your life work, i have an autistic son, we have to constantly adapt to make sure he is thriving and many times people don't understand... they only want people that fit a criteria, i'm not apologizing for my son and you should never apologize for your medical condition🥰sorry big comment 🤣
I HOLD THE CANDLE VETO POWERS! This is so cute. The introduction of the new Marvel character. You go Jen!
It’s crazy thinking about all the adjustments we make for our chronic diseases… I’ve been dealing with chronic headaches/migraines for close to 30 years now - started around 11 - along with chronic back pain. I have 2 kids and was a single mom for large extensions, along with living abroad with no family close by. I thought due to the single mom experience, and having had chronic pain for so long, that my life work arounds are limited but yep, I have an extensive list as well 😅. I had light bulbs removed at work (luckily working from home now), no dairy, gluten, alcohol, limited meat, all screens are always set to super low light, warm light and I have some red migraine glasses I absolutely love. I have been going to chiropractor and massage therapy for years now, all sorts of neck and back massage tools at home, ice mask, ice head wraps, essential oils, etc. I find it helps most if I can sense a migraine early on and then take extra care of myself with plenty breathing breaks lying down (incl. essential oils) also I’ve been experimenting with the mind - body connection, with positive self-talk and affirmations. Soooo excited I found your channel 🤩. I also did EC with my son.
**Edit: super important for me is getting enough sleep, regular meal schedule and of course PLENTY hydration. All the best to you all ♥️
I totally have a rollator with a seat specifically for the still bits where I need to sit. It also helps with my EDS stuff but that seat changed my life!
I've been looking at getting one as I have GHSD (possibly hEDS) and currently a lovely herniated disc as well. I've gone half way by taking a camping stool or seat when I know there's a lot of standing involved
I've got a rollator from when I had knee replacement, I will not let that baby get away from me. It's been tremendously helpful! With my knee and back, sitting on that rather than lower on a camping stool is so much more ideal. If I got to about a foot off the floor, I'm going on down there. It can't be helped..
Now I'm curious about the travel bag. With reflux, colitis, panic attacks, migraines (with fevers), raynaud's, chronic back pain, and allergies, I tend to get dubbed the walking pharmacy in the office. I worked with 2 young ladies that have panic attacks so slipping a note to the receptionist I felt like I was going to have an attack incase it got to the point breathing was an issue was so nice. The other girl asked because she could see signs without my having to say anything. So much of the up/down bendy avoidance here goes for my low blood pressure and reflux. It's always interesting to see what modifications others make to see if there's something else to try or where issues overlap.
I'll pose the question since my migraines weren't as bad in college, what work arounds does anyone use for studying? For the major portion, I printed the online textbook double sided to reduce the weight for my back and avoid the screen for migraines, but it's really built to be done on a pc. The smaller courses (about 24 hours of courses) can't be made into paper books. Last year, I triggered some migraines even with the screens at the lowest settings.
I really like the website naturalreaders when I need a screen break. I copy my readings in and then it'll read them to you. It's also a super helpful editing tool because you notice typos more when read aloud.
Hi! Former special Ed teacher and now a first wave covid long hauler going into I.T. (working towards digital accessibility specialist).
Adaptive technology can make a huge difference. Have you tried text to speech, and/or dark mode (migraine + less cognitive load for some), and/or an iPad on a stand? Your uni/college should be able to get you OCR PDF textbooks (when you have proof of purchasing a new copy of the book) or will scan it for you. (You need to go through registration with your school’s disabilities services first.) Alternatively if your printing out your texts anyway just scan then to OCR (optical character recognition) PDF format.
Apple products have the best text-to-speech and other adaptive tech built in. iPads with Apple Pencil and the Notability app to organize notes works really well. iPads are much lighter than a PC laptop- even the iPad Pro with a Keyboard. Notability lets you set the paper colour. With some tweaking you can get soft light grey text on black. Larger print is good too.
For my migraines and long haul covid I set up an Apple smart home with two HomePod minis and smart lighting (Phillips). All I have to do is say “Hey Siri set bedroom light to pink/turn off office ceiling light/etc”. Total game changer for my migraines!
A add-on on other program that can read the text to you could be helpful for studying. That's how I got through my online courses, living with migraines and dizzy spells that happened when i was sitting up. My blue tooth headset let me lay down and listen. I could also sit at the screen and listen and read along for sections too and that helped as well.
Your comment about salt really hit home for me! I go through so much salt, but had to get creative when cooking because of my DH dietary issues!
I'm sure this will save a life by sharing this information and introduce to you DR AZAKA CURE REMEDIES on TH-cam who cured my disease which I'll rather be private about, I was cured from HPV with his herbal medicine, I wasn't really expecting a herbal medicine to be as effective as I experienced, my test results proves that I've been cured from HPV , and you can as well Contact him and be free from any kind of infections or diseases , I'm pretty much certain you'll all thank me later 😍
Please do a video on your go bag! I don’t have migraines as common or as bad as yours but I do get them. A go bag sounds like a really great idea that I’d love to implement and would love to see what you have in yours to get ideas for mine!💜💜
If you decide to lick your salt lamp you better video it...Lol! I'm with you on the noise stuff...it's so much better if I can control the volume to an extent. I have a spine injury and can't bend to pick up stuff like I used to so I have grabbers (Mobility Aid Reaching Assist Tools) all over my home. I also have scent triggers so I carry a boom boom stick with me to help alleviate the troubled scent. I also have little trick I used back in my X-ray days when I worked at the hospital spraying my favorite scent into my cleavage and if a scent triggered me I could quickly slip my fingers where I sprayed my cologne and hold them to my nose. It gave me a few minutes to escape the triggering scent (just playing a trick on my mind maybe). I know it's odd but it seemed to help.
Don't feel bad about sitting on the chair in the store. Ive had to lay flat out in the isle multiple times and thats BRILIANT. 💕
PLEASE do the work modification video. I need that desperately!
i remember having to sit down to cut vegetables when my chronic illness was really bad.. and when i would go to the supermarket 5 mins away i had to sit down on a bench to rest my legs when i got there before going in to do my shopping. standing in the queue at the end was the worst part. then i would sit down on the bench again at the end before walking home. but i made it and that's what mattered!
I have magnetic charging cords! I have 2 by my bed, one for phone one for tablet. BUT! All my devices have the magnetic port and any device I have I just need to have the cord!
I have a glass desk with metal trim next to my bed, my cords just go on the side and are there when I need them. Downstairs in the living room I have 2 cords and a metal rim around the table next to my chair. (I had a pack with like 6 ports that I put in my devices and around 6-9 cords. 2 are really small I don't use them, 4 are 3 feet, 2 are 6 feet. Anywhere I go, I only need to bring one cord to charge all my devices! It's the best thing ever and is probably cool even if you don't have health conditions!
I set on the bathroom sink when I get ready because of my panic disorder and I drink tea for migraine prevention since tx is extremely hot
“Thats a w k s not ox like a cow” 😂☺️ I love it :)
I'd love to see a video on what's in your go bag!
I was planning on searching for a video like this and you just- poof- showed up in my recommendations. I've been struggling with extreme dizziness and nausea for months and just recently learned I have damage to two parts of my right inner ear, so the positional tips were particularly handy for me. I'm glad you're still able to get out and about. I typically only leave my house for doctors appointments and I get panic attacks every time😓
You are so darn adorable and sweet to listen to...my blood pressure goes down 20 points just watching you! Really!
I would love to see a go bag video. I have one as well.
For migraines I have a emergency kit on each floor of my house including the basement. With sunglasses pain pills. The two floors they have bedrooms on them have masks that way if I just have to pick a kids bedroom and lay down I can. All the bedrooms have blackout curtains whether they need them or not. I also have a cane on each floor because I have MS which can cause issues with mobility. I also have an Apple Watch that has fall detection and will alert my mother and EMS. My husband travels too much for it to alert him
I definitely want to see what’s in your go bag and the accommodations you made at work!!!!! I need to make a go bag for myself. I sometimes have migraine attacks at work and it isn’t safe for me to drive home. I don’t usually have anyone to come get me and I live 30 minutes away from work. There have been times where I’m so drained from the pain that I can barely stay awake so driving is a no go
I would have a pillow and blanket in the car, and maybe an inflatable thing that can turn the backseat into a bed. I would also have in the car window covers for all the windows. In the bag I would carry an abortive, one to two doses of daily medications, comfortable clothes that I could sleep in. these could also be in the car, enough food to have at least one meal, water or other drink of choice, something to help with nausea like ginger candy, and anything else I may need if I have to spend an evening/night in the car. It's about being comfortable and caring for yourself and dealing with symptoms. Keeping track of what you use during an attack may be helpful in building your bag.
Yes yes yes on the go bag video.
I feel you! I've had migraines my entire life. I have a migraine bag too. Great tips, thank you for sharing
Sending you light and love!
The dishes is the same for me, but also the smell of dirty dishes is very triggering for my migraines. Over stimulation is a huge trigger for me. I can't multitask anymore which has been a huge change since daily migraines or constant.
I need a recovery day for an afternoon of being on my feet. Especially, if it's medical stuff. If I go do labs, that's what I can do for the day.
My asthma is allergy induced and stressed induced. I have to be so careful lately about the days I can go outside the house. Air quality, pollen index, super windy, any of those and I'm inside.
I need to start doing the strobe warnings!
Shower Bench, vanity stool (cushioned) in front of full length mirror for makeup, brushing teeth, taking medications, break while doing my hair = vanity stool. Life changer
I was just about to say I hope she make a video about what's in that basket and boom you said you're going to, YAY!!! I know you feel embarrassed about the chair for sitting in the store but please don't, I'm also dealing with what you are in addition to that I'm dealing with problems with walking, knees giving out and staggering like I'm drunk so I have to use a walker for when I go out for safety. I don't drive so this is also how I'm able to do groceries and carry them home on the walker and still have some sense of independence. The noises and light bother me (I have special tinted glasses for that I wear indoors as well to help) as well and the bending is a huge issue for me as well. Here in Canada it's also Brain Injury Awareness month as well as Migraine Awareness month both of which I battle with along with possibility of POTS and other chronic illnesses. Also the scent thing is something I have absolutely no control over when I live with a house full of roommates and they all get their own stuff. Hoping I'll be able to get my own place soon but need to wait for the housing list to get a place I can afford.
I use the app clue to track my symptoms, it's made for your period but I use it for both. I have very bad ADHD and a terrible perception of time so that way when my doctor ask me the frequency of my symptoms I do not have to guess. My bed was made by a friend and it is at waist height, so I don't have to bend to get in. He also put plugs into the headboard so I don't have to go look on the floor for my wires they are behind the headboard. Flexible ice packs. My chiropractor is my best friend (not really but you get the point),
Wow. That's awesome that you're able to walk just fine Jenn! :) I have issues if I stand still for a long time but I'm thankful that walking doesn't cause issues..and YES please do the work modifications :)
I am right there with you, I need to be more proactive about postural changes. Great tips!
I need to work on advocating for myself. Some of these things would be really helpful for me, but I feel weird about calling attention to my migraine triggers/symptoms. One thing I do do is carry my blue light filter glasses with me everywhere. They're great for movies/driving at night. And something I would like to do once I start living alone would be to put nightlights around my apartment so when I'm very photosensitive, I could keep the overhead lights off but still be able to get around.
I'd love a go bag video.
I have fibromyalgia, migraine, an autoimmune illness, and ADHD. All my meds + some fidget toys + a couple snacks are in a box right next to my bed, plus a tigerbalm tin. I also use a pill organizer because otherwise I can't remember if I've taken my meds. I have tons of ice packs so there's always one already frozen. Heating pad plugged in by my bed. Super long phone cord + your phone cord hack w/ the binder clip. Advil in my car, and in my bag, and in my room, and on the first floor of my house. I try not to plan more than one "going out" thing a day, and avoid planing things 2 days in a row when I can, depending on how triggering I expect the plans will be for my fatigue. Almost never make appointments/plans before 11 am, so I can sleep in (chronic fatigue). Hoping to get a rollator with a seat, but might go for the camping chair first! Long body brush for the shower bc bending my leg to wash my calves/feet is painful for my hips. I also used to have an icyhot patch in my wallet when I was in school lol. Oh, and I have loads of lamps bc that's easier than overhead lights when I'm migrainey but still need to see.
Oh off leash dogs drive me nuts!! Especially as it's not legal in my area yet people let there's off leash all the time
As as fellow POTS sufferer I eat scoops of Vegemite when I get POTS-y (I'm aussie though and you guys probably find that grose but being brought up on it is amazing) but one thing that you might want to try is miso soup.... in particular those INSTANT MISO SOUP sachets just straight... super salty... I always carry them in my handbag... and also sushi fish/packets of soy soy sauce. I got sick of taking salt tablets so I got creative 🤣 having POTS episodes at the sushi train I just ask for lots of miso soup and like a bowl of soy sauce skip the plastic if I get dizzy ...I get the weirdest looks but it's better than fainting 🤷🏼♀️
I'm sure this will save a life by sharing this information and introduce to you DR AZAKA CURE REMEDIES on TH-cam who cured my disease which I'll rather be private about, I was cured from HPV with his herbal medicine, I wasn't really expecting a herbal medicine to be as effective as I experienced, my test results proves that I've been cured from HPV , and you can as well Contact him and be free from any kind of infections or diseases , I'm pretty much certain you'll all thank me later 😍
Hi Jen!!! Teen with migraines and HSD (form of EDS) here. Mine are usually 1-2 days long every week or so. How do you deal with guilt of not being able to spend time with your family during a migraine? Love your videos btw!!!
looking forward to the workspace modifications!!
Yes I'd like to see a video on what's in your go bags and modifications you made when you worked in the lab. Btw, I think that you work hard every single day-not all work has to be paid work.
I'm fortunate to have only had a handful of episodic migraines. They are of the light sensitive variety, so If it's not practical for me to stay in a dark room, I wear non prescription sunglasses and ask my family to dim the lights. I will wear them in the shower if I am taking one that day. The lights in the bathroom can't be dimmed and they need to be on for the person helping me with my shower, so sunglasses are a good compromise
Crohns tip- when pain becomes to much, just lay in a fetal position on the floor for 6 hours!
I'm sure this will save a life by sharing this information and introduce to you DR AZAKA CURE REMEDIES on TH-cam who cured my disease which I'll rather be private about, I was cured from HPV with his herbal medicine, I wasn't really expecting a herbal medicine to be as effective as I experienced, my test results proves that I've been cured from HPV , and you can as well Contact him and be free from any kind of infections or diseases , I'm pretty much certain you'll all thank me later 😍
I have the same reactions to scents.
Hi Jenn don't have POTS or the migraines like you. But I do have migraines I have learned dill pickles mostly the juice will help me that is. Growing up I hated dill pickles. But when I was pregnant ( 24 years ago) with my daughter I craved dill pickles and the whole 9 months I didn't have not one migraine and just learned that dill pickles juice helps so now I keep dill pickles in my refrigerator. Just thought I would share that with you incase you want to try. Because a regular migraine is normally because you are dehydrated and pickle juice levels it out.
I call my migraines shatter headaches. Whenever I get one it feels as if my skull is shattering when ever I move my head. It hurts so bad
I've actually tried licking my salt lamp and it tastes really good! Just make sure it's dust free :D
I use FL 41 tinted lenses for computer use and as sunglasses. I am extremely light-sensitive with my chronic migraine. The sun is one of my worst triggers.
Yes to the go bag! Great video!!
Love you girl,looking beautiful as always!!!! Keep shining ✨ you are amazing 👏
Such a good laugh at "used to do Crossfit, now shaky calligraphy". I took up painting my nails instead of calligraphy, but I totally get the feeling. Cannot handle any up-down business with exercise any more. (No POTS, just CSF/intracranial pressure and migraine issues.)
I’m really lucky and I have a job where I’m able to take 2-3 20 minute naps throughout my workday, otherwise I wouldn’t be able to work. I’ve also recently started
- wearing sunglasses pretty much whenever I’m out in daylight hours and it’s not overcast
- switching from videos to podcasts to reduce screen time (although I do still miss the channels I don’t watch anymore)
- scrunchies instead of elastics so it doesn’t pull as hard
- leaving my devices set to “night light” (ie less blue, more yellow) 24/7
That is so funny that you mention singing to yourself when you go into a migraine! I started noticing that I do the same before I go into my (suspected) seizures. 😂 Is that a thing?
Migraine Jen's fainting was originally dx as partial seizures because of the convulsions. You could be onto something 🤔
I would love to see a go-bag vid! And also I’m a biochem major and would love to see some more biochem Jen content too!!
I have *such* a rough time with FOMO so I have a hard time telling the people around me that I need to go lay down and usually they are the ones telling me that I should go lay down. Also I am the same with being okay POTS wise with walking and moving but if I’m standing still it’s game over. Most people assume when I use my wheelchair that it’s because I can’t walk or pass out but really it’s such a hodgepodge of reasons including balance issues, fatigue, instability, pain, and yes POTS too!
I love Life360 and I’m sure my mom loves it even more especially when she is up in Chicago with 2 adults kids with POTS under two different roofs
I do my medications through my feeding tube sitting on my toilet lol and I used to have to use so much effort to crush the pills and suck it up and another tubie taught me to just put the whole pills in a syringe, suck up some hot water and then by the time you need it, the pills are dissolved and ready! No more wrist/elbow/shoulder subluxations!
I also highly recommend multiple heating pads if you can afford it especially if you live in a multi story home. And I just bought the coolest thing ever which is an ac & usb car converter so I can plug my heating pad in the car 😲🤯
My bestie will just plop herself down on the floor and then use her service dog for dpt and to get back up. I might suggest the camping chair for her. But she also has heds and her purse is already heavy.
I'm sure this will save a life by sharing this information and introduce to you DR AZAKA CURE REMEDIES on TH-cam who cured my disease which I'll rather be private about, I was cured from HPV with his herbal medicine, I wasn't really expecting a herbal medicine to be as effective as I experienced, my test results proves that I've been cured from HPV , and you can as well Contact him and be free from any kind of infections or diseases , I'm pretty much certain you'll all thank me later 😍
I am new to this and its so scary. It's just me and my 2,kids here and I worry (which isn't productive in any way)
I would love to see your go bag.
You came to the right place. Jen is a great wealth of knowledge and so are her subscribers. Welcome to the group!
I just have a grabber in my bedroom, in a closet downstairs and a foldable one that’s usually in the bag I always have since reaching things on the floor from a wheelchair is hard, especially since my chairs inside the house don’t have footplates at the right height so I can’t put pressure on my feet to brace myself and stay balanced
Hmm I need to do some of these... This is my 4th day of flair
I have explained to my pupils why I sometimes have to wear earplugs or sunglasses in class for my migraines. I try to have a nap every day after school and on worknights I go to bed at 9pm latest. Hot temperatures are very bad for me so our headmistress is using me as an excuse to have ACs installed throughout the school 😂 I have to watch my water intake religiously. My dentist also recommended one of those plastic thingymabobs that people who grind their teeth use and it really helps me. Weirdly enough, long showers alleviate the pain while baths make it so much worse.
Would love to see the workplace tips video
I'm so sorry you are feeling embarrassed about talking about using a camping chair. I don't quite understand the embarrassment. Maybe it's all the times I want to Comic Con and wished I had one (or was happy I scored one for free) for waiting in lines.
Yes I would love to see what is in your go bag and I would also like to know what kind of dr. I have to go to to get checked for Pots and what does the test include?
I turn the lights off in the office and my computer monitor onto greyscale and low brightness when I have a migraine at work and it gets to a certain intensity. My brightness normally is already lower then everyone else on the computer.
I'd love to hear what you put in your go bag!
Love your Videos!!❤❤❤❤
Thank you!!
love your videos! i get migraines but thankfully they're not chronic, still have no clue what triggers them though but they definitely disrupt everything in my life. How long did it take you to figure out your triggers? i'm sure that's such a complicated question. btw i didn't find that shirt but i found a different CF one, definitely not as great as yours but i settled anyway. Would love a video about changes in the workplace! I work with someone who has different medical issues and she calls out way more frequently than any typical employer would put up with, i feel super guilty for getting so frustrated about not being able to count on her. would love to know if there are different things i can try to recommend to our boss about things that could be potentially helpful for her
Would love to see what's on your go bag. This was such a good video!
I have "blackout" but the Doctors say it is "sleep devilation". If I don't sleep for eight straight hours I will have them on that day. But, I have "blackout" when I'm in a pool and dizzness when I drive over a bridge or open space mountain area. I fear taking a shower!!! The change in room temperature and the weather effect my sleep patterns!!! Do you have problems with "low" blood sugar? Thank you for sharing!!!
How do you do that tracking thing? I need that in my life.
I’m really interested in hearing these. I’m trying to figure out how I can be independent and still safe. I’m hoping I’ll be able to live independently in a years time for uni but at the moment it seems incredibly out of reach. I honestly don’t know how I’m going to manage it.
Everyone is different but you will learn your triggers and your prodrome signals and how long you have between the onset of prodrome and the full attack. It takes time, but you will get to know your migraines very well and you will be able to have your independence.