Your symptoms are very similar to mine. 200/120 heart rate 110-130. I totally understand what you’re going through. Also, my skull cracked behind my sinuse cavity and part of my brain mushroomed out into my sinuse cavity with spinal fluid leaking out of my nose. Let’s just say the last 10years have been challenging. Having a doctor that diagnosed you and in some case backs you up for disability is a must.
I am sorry to hear of your experience but appreciate you sharing it with you, you are brave and I hope that doctors are doing the things needed to keep you comfortable.
From one potsie to another, thank you. We share mostly the same symptoms. My BP goes as high as 212/111 and last year March, it went from 140 to over 200 by just standing up within a minute. I was forced to stay at the hospital for 3 days and to make matters worse, was diagnosed with covid too while at the hospital. The worst symptom is that where my body can't calm down. I hate the sensation of feeling like something is crawling all under my skin. It's brutal but somehow, we survive it all daily. I am currently searching through the web to see what others are experiencing and what they are doing to at least, get some normalcy in their lives. This video helped. Thank you so much.
I am happy to share my experiences. I am sorry to hear you battle this terrible form of POTS. They put you on meds? I know for hyper pots there are two meds which can help one is called Ivabradine is a HCN channel blocker (this one has not been made available to Canada where I am from) and the other is the one I am on called Methyldopa which has been used for high blood pressure in pregnancy but has helped me get my numbers down. I understand the weird body sensations and the cant seen to calm the body down. I am sorry to hear you were diagnosed with covid19, has the infection passed?
@@Villainari_ Thank you so much for your reply. I am currently on a Benzo, a Beta Blocker, a BP medication and a SNRI to help with the body/nerve pain. I am pretty scared of trying new medications. It just makes my anxiety worse and in turn makes everything else worse. Covid passed. I didn't even know that I had it until I was diagnosed. I think I had minor cough for couple of day and a small rise in temp with those couple of days. Nothing to a fever level though. Sometimes, I wonder if the testing was reliable. I asked the ER doctor when I was admitted last year if the covid infection contributed to the HBP and she said, probably. I am just thankful that it passed. I pray that it gets better for all of us. Thanks.
@@machlays I understand the anxiety around trying new meds. I had such bad reactions to all other heart meds the one I am on now was my last chance and made a huge difference for me. I am thankful to hear you are medicated for it. I also hope things get better for all of us. I have hope for us that it will. 😊
@@machlays happy to respond. Diseases can be isolating and I want to change that. We matter. Our stories and lives need to be acknowledged as the chronically ill we have a strength in us and a passion of live we need to let shine through just as much as the healthy. 😊
Thank you so much for the vídeo. I have not been properly diagnosed, but I have all The symptoms...have been dealing with tem tem the last 4 years now. Horrible experience! It is good to listen to other People Who has the sabe problem. Sending good vibes to you.
Thank you for the comment 😊 It does such for sure. I hope you are able to get the diagnosis you seek. You matter. Your journey matters. It is horrible that it takes a while to be diagnosed. But we can do this. You are not alone. Sending good vibes your way too. 🤩
Compression calf sleeves and saline infusions can help. The Alpha-2 agonists (Clonidine or Guanfacine) specifically target hyperadrenergic POTS by signaling the body to not dump so much norepinephrine and adrenaline into circulation. They've been wonderful for me. I have hypermobile Ehlers Danlos syndrome. I also have digestive motility issues, which have been eliminated by Mestinon (Pyridostigmine) - plus this medication can help a bit at mitigating POTS symptoms.
Thank you for sharing this. I have hyperpots, hEDS and chronic migraines. Living with these conditions is really tough. It helps to hear what others with these conditions use to deal with theirs. I'm so thankful for the support of my great doctors and the support groups online. Wishing you better days ahead.
Thank you for this ! I have been dealing with this fir twice years now . Still in the diagnosis stage but drs are treating the pots symptoms only . I feel it’s going to be a long road ahead .
It's hard to get s proper diagnosis. I'm trying to find a "movement" that knows where to knock. I'm exhausted and getting a bit hopeless. Thanks for sharing
Are you trying to get the hyperPOTS diagnosis? There are many forms of autonomic nervous system dysfunction but there is hope. I am not sure where you are in the world but here are some resources. I hope they help. There is a clinic for autonomic nervous system dysfunction in Canada ucalgary.ca/news/first-autonomic-nervous-system-disorder-clinic-opens-calgary There is a place in the USA which can be found here. stanfordhealthcare.org/medical-clinics/autonomic-disorders-program/autonomic-nervous-system.html There is also some information here healthcare.utah.edu/neurosciences/neurology/autonomic-dysfunction.php And some more information here nyulangone.org/conditions/autonomic-disorders
Fellow pots sufferer here. Currently taking a beta blocker which helps reduce the tachycardia but still feel symptomatic. I can relate to the feeling of not being able to relax. I want to try one of the alpha agonists medications to see if it could help. I feel so wired , like I am on 10 cups of coffee a day. It really is horrible. I’m just wondering how long have you been taking methylodopa ? Also, do you think there will be a time where you are rehabilitated enough to then wean off the medication or do you think you will have to keep taking it indefinitely?
I appreciate you sharing your story and what you have experienced with POTS. I think answering these questions would be better done in a video. If that is ok with you? Then I can talk about things more in-depth.
Did you get to try one of the Alpha-2 agonists Clonidine or Guanfacine? They've been a huge help for me. Much better than beta blockers for me, and fewer side effects.
Dehydration with hyperagernergic pots is likely worsened. I have hyperagernergic pots due to my paraganglioma. When dehydrated. Which is constantly...I presume due to the fact I urinate massive amounts at multiple times throughout the night. I believe There is a secondary pots syndrome in this instance. ( Hypovolemic pots). It's kind of like kicking a horse while it's down. Also. I'm curious about how or why you mentioned that the pots cause the norepinephrine and epinephrine. I always thought it was quite the opposite as it is a syndrome not a disease. As in my case Paraganglioma secreting norepinephrine causing pots. However a number of diseases may cause your body to develop pots. Including vagal nerve injury and disease.
Thanks for sharing your story , do you also have polyuria? (Frequent urination?) That makes it hard to stay hydrated. Maybe it's compounded by high blood pressure against the kidneys, making them overactive, which is also the location to release the adrenals understress ..
@@Villainari_ thanks Ari for replying , I'm starting to feel like it's a negative feedback loop surrounding the kidneys , causing dehydration of electrolytes which causes blood volume loss - high blood pressure -POTS , high anxiety and super vigalance ( mistaken for hyperchondria) I went on a dash diet and my POTS got even worse.. doctors ignore my urinary and GI issues , and focus on the cardio symptoms only.. we need more research into this.. 🙏
@@shellterminal2022 happy to answer comments always. We do need more research into HyperPOTS for sure. I do smaller amounts of foods 30/40 compression stockings, meds hydration etc. Happy to share info and chat with others who face this. It is a hard journey, one I understand, because hyperPOTS is a beast. If ever want to DM me I have many socials, just let me know its you from TH-cam if you want to chat. 😊
@@Villainari_ I've been doing 2-3 packets of Pedialyte and just eating more salt on foods, the DASH diet for high blood pressure is low sodium high fiber, caused bloating , more pressure against the bladder and kidneys.. it's like living in opposite bizzaro world..where everything they recommend is opposite helping you but making it worse.. I tried propanelol and it made me vomit, scared to eat large meals when I used to eat huge meals regularly , onset of increased POTS was statin treatment for high cholesterol, I believe statin caused overactive kidney and high blood glucose , further exacerbating my fluid losses.. it sent me to the ER three times for 170bpm and aFib and now they want stress test Heart rate when sleeping is as low as 38bpm and sleeping blood pressure is 100/60. Waking pressure is 150/110 , I am 3 beats away from clinical POTS during tilt test.. aspirin and vitD helping me sleep, the insomnia, cold sweats, blood pooling in chest, its tough I see others who are bed ridden, so sad.. I can walk with vertigo but must sit after while .. I feel for everyone who deals with this and then told by doctors there's nothing wrong with you , that you have stress and anxiety... Like Women w/ hysteria..
I've questioned if I had POTS before bc I get faint while standing, especially in heat off and on for years now. Then I started having heart palpitations unless I sat back down last summer. I also found out I had hyperthyroidism so I thought okay, maybe it wasn't POTS after all. But now for 5 months I keep having random what feels like adrenaline surges and idk why and it really stresses me out. Happens alot when I wake up from a nap od just random wether sitting or standing. Does that sound at all like pots?
The adrenaline surges are no fun, I sometimes am up all night because of it, and they do cause a stress reaction (in my experience, not a doctor but someone living with HyperPOTS). The surges happen anytime for me, the best way to test it is to get your blood taken while doing a tilt table test, for HyperPOTS or a Tilt Table test for POTS. I would recommend seeing a doctor who specializes in POTS.
@@Villainari_ yes! It is the heart rate and fatigue that is bothersome I have some other conditions, I’m having a surgery for a hernia but after that I’m going to focus on trying to see a cardiologist again. Last time I saw a cardiologist the guy was like “well it is what it is there is nothing we can do” … there are def different therapies that I can still try, I have hyperadrenic pots, I hate the feeling of the fight or flight chemical release when I’m literally doing nothing 😭 I’m glad there is a community of people, I actually saw some people who got long covid got differing versions of pots so it may become more common? Anyway appreciate the video. Blood pressure is higher when I stand but doesn’t go above 150 sys so not out of control. I have to wear compression stockings everyday
@@sarahok6589 I hope surgery goes well for you. For sure keep seeking out treatments which work for you. Hydration has worked for my as has compression and medication for my hypertension. My blood pressure was over 200 and my heart is enlarged. Hydration therapy has made a massive difference for me. I hope you can find a cardiologist who will be on your side. I am happy there is a community also. HyperPOTS sucks, I rarely sleep because of the fight or flight. There are some good books on the vaso vagal nerve which talks about how to relax the nerve and exit fight or flight. It is a process. I have hope for you that you will find a doctor that will be more open to helping you. And hope there will be more research soon.
DNRS is expensive, so I have not done it. I work on doing things I love for the most part and living life; with high blood pressure, things are different. Compression stockings are great, and salt and fluid intake can help me; I am not a doctor but a patient living with Hyper POTS. Have you tried DNRS? What things have you tried?
@@Villainari_ little did I know I will get severe cfs.. what ended up helping me was Irene Lyon course. My nervous system was out of whack . I was fully disabled now walking again but still housebound ..
@@Thelittleclipstore what is this course is it online? POTS is very disabling indeed and can be frustrating, I am happy to hear you have found something to help would love more info.
My endocrinologist diagnosed me POTS but kinda just left me high and dry. I didn't even know what he was talking about. I went to him for my hypothyroidism and anxiety/panic attacks and he diagnosed me with POTS after checking my BP and HR lying and standing. In my intake form I had listed issues with numbness and tinkling, heart palpitations and chest pain, shortness of breath, leg pain, and a bunch of other stuff. Between the BP and HR test he did and those symptoms he said, "You have Postural Orthostatic Tachycardia Syndrome. And I was like, "Wait? I have a heart disease?" (I heard the word Tachycardia) He told me no but never explained anything. 🤷 I stopped going to him after driving four hours round trip every six weeks. I found a local GP and when I had my records transferred over and he saw the POTS diagnosis he referred me to a cardiologist and neurologist. So now I have those two appointments coming up in the next couple weeks. Because of the way that I had been feeling I was afraid that I had too much salt in my body so I pretty much went salt free. After that though it seems like things or even worse than before. Now I am hearing you say to increase my salt intake LOL. I'm not sure what to do at this point. Sometimes my blood pressure is completely normal and then other times it jumps up to like 190/100. It will start at like 180/90 and when I see the numbers my anxiety kicks in and it goes even higher. And then my heart rate will jump up as soon as I stand up or start panicking. Even at rest my heart rate tends to stay in the 80s and 90s. I apologize for this being so long. I wasn't planning on writing a book LOL anyway, hopefully I will get some answers at the cardiologist and neuro appointments. Thank you for posting this. It gives me hope. ❤️
I am happy to share the hardships of this disease in hopes of connecting with others and helping other not feel alone. I am happy to hear this has given you hope. HyperPOTS is weird because of the hyper tensive moments and I understand what they feel like, my heart is larger then it should be because of being undiagnosed for so long. I do hope that your appointments are well. And feel free to DM me on social media or here if you need a chat. I am open to chatting about complex illness. The salt intake can help for sure so can having hydration on a regular basis. I get black outs because of hyperPOTS from doing nothing because the blood pressure gets high. You are not alone and I do wish you all the best at your upcoming appointments. Thank you for sharing with me I appreciate it a lot.
Dr. Diana Driscoll is who recommended Mestinon (Pyridostigmine) to treat POTS by stimulating the vagus nerve. She made an OTC supplement version of this medication, called Parasym Plus. I've had a lot of success on the Mestinon, although I primarily take it to treat my digestive motility issues.
Any idea what might have initiated your POTS manifestation. I'm dealing with a lot of these symptoms, namely throbbing pressure headaches when standing, but I have no idea why these symptoms randomly gradually developed over the years.
I am currently on Verapamil which helps, but I still have wild swings in heartrate and blood pressure when I am upright, I am hoping my doctor can get educated about this so as to help me.
Do you have compressions for when you are upright? I ask because my HR was terrible when being upright and compression stockings of 30/40 really helped me. I am no doctor but living with it and trying things has helped make life more bearable for me and I want to share what has helped me.
@@Villainari_ I do have them, but the length of time i can tolerate wearing them is limited, I have Ehlers-Danlos Syndrome and so in addition to the POTS I have GI issues and my skin is incredibly sensitive, compression hose and leggings make me anxious because of all my belly pain. I may have to try wearing them with an abdominal binder or corset (which would probably be helpful anyways...) as it seems that if compression is equal over my abdomen I tolerate it better.
@@HouseKatArmy I understand I also have ehlers Danlos and the GI issues are no joke they suck. Happy to chat about anything and brainstorm. I hope you are able to try the abdominal binder and that it helps you.
@@HouseKatArmy The gastroparesis medication Mestinon (Pyrodistigmine) can also help to reduce POTS symptoms. It eliminated my chronic constipation and intestinal issues.
Where is a good place online to find compression stockings? I’m pretty slim and tall so unsure about fitting. Like almost as skinny as Taylor Swift so I’m not even sure what size that would be haha. I definitely want them to be tight
Online I am not sure I did order some online but they were really loose! Sorry for the late reply been dealing with a flare as of late. I use 30/40 compression and I get mine custom because of my thin legs/ankles. I am not sure where you are located in the world but in Canada there is a COOP medical supplies store but one has to go in for a fitting, you only have to go in once as long as you constantly order their compression tights after, they should be replaced every six months because they loose their effectiveness by becoming loser due to wear. If I find any online that are good I will share for sure.
I have this too and am untreated. It usually is brought on by viral illness. Then will decrease in severity after a few months. I just got COVID and am dealing with severe symptoms. I have constant panic attacks, SOB, can’t sleep (sleep apnea now, I think), blurry/grainy vision, etc.
I am sorry to hear you are untreated. I am not sure why youtube did not notify me of your comment. I hope you have found some relief for your symptoms.
@@juliaarambula3153 no. I am looking into EDS as a possible cause. I think eagle syndrome and TOS might be what I’m currently dealing with - which brought about the symptoms
@@juliaarambula3153 I go through periods where I lose a lot of weight, but the weight is mostly swelling, so I swell and my face looks bigger than it is and when the swelling goes down I look thin again. I can gain from 10-20 pounds while I am in a swelling phase. I have been weighed by the doctors in two weeks and have gone up or down 10-20 pounds due to swelling.
I wouldn’t say occasionally, it really depends on a lot of things. In a flare it can be often. I experience symptoms regularly but do what I can to cope with them as they arise.
Thank Allah i dont have thee extreme condition with blood pressure and heart rate, mine normally go up when standing up or when i climb a stair, usually it gets normal within 2 to 4 minutes, but i have migranes, indigestion, chest pain for over an year now, and 2 months back i was having trouble breathing when walking, also had fatigue and loss of apatite. also 2 weeks ago was having trouble swallowing saliva, saw an ent doctor, he did a barium swallow x ray and said there is no issue. I have symptoms of heart faliure, throat, and lungs cancer. Last year saw a cardiologist and he did blood and treadmill test and everything was fine, he told me clearly he has no idea why its happening. He gave me Ciplar La 40mg. This medicine works, it controls tachycardia by 60 to 70 percent.
I am happy to do here that medication works for you. I am not sure if it is available where I am at. Have the doctors helped you get relief from the other symptoms you are having?
In most cases yes. But not with hyperPOTS I have low blood volume due to a complex illness. My autonomic nervous system is a wreck and I have low blood volume the salt and fluids help to bring the low blood volume up. This disease/condition is understudied. HyperPOTS is rare.
@@yousadisadisa3091 It is not impossible because I have it happen, and I go into shock. The adrenals are involved in hyperPOTS. It isn't just one thing that causes something, and high blood norepinephrine in HyperPOTS patients are to blame for High Blood Pressure. As someone who lives with this terrible disease, and I had this information told to me by specialists who specialize in the diseases. I aim to share factual information in a world of misinformation. I am not a doctor, but I am a patient living with a rare and complex illness. It is rare, thus there isn't a ton of info out there on it. I want to help others living with this terrible illness who also go into shock from low blood volume, high blood norepinephrine causing stroke high blood pressures, and struggle to stay conscious at times.
Calcium channel blockers dont work, Propranolol doesn't work, Corlanor caused 207 heart rate on loop recorder(had an E.P study) Metoprolol caused heat intolerance so Throughout the past 10 years I keep going back to Atenolol which works great but now I have a positive ana (drug induced) and I can NOT stay conscious in anything above 76 ﾟF. Need to try something new medication wise, i want my life back 😪
Understandable for sure. HyperPOTS is immensely frustrating. I couldn’t do beta or calcium channel blockers myself. Do they have a new medication for you to try?
Have you tried the Alpha-2 agonists Clonidine or Guanfacine yet? Those two are the most specific at targeting hyperadrenergic POTS. I had the same bad experiences with those other medications you mentioned. Clonidine/Guanfacine have been amazing - I've been on both, and Guanfacine seems to work best for me.
In Canada there is an autonomic clinic. Cardiologists should be aware of the tests and should be able to send patients for testing or to an autonomic clinic.
Wait, if you code you go to the ICU and you get admitted! It’s serious. Not fast lighting you as I also have hyperadrenargic POTS and it does feel like death.
HyperPOTS sucks, and people in the ER I was in had no idea what to do with me. It was not a fun experience. I was in the ER, and I found that because it isn't a commonplace illness that at times people are in disbelief of the symptoms even though my blood pressure is over 220/110. It hurts to have it that high. HyperPOTS feels like death, I agree, because of how fast the symptoms happen.
Death is probably the best description I have heard. I'm happy I found this video. Not in the misery loves company sense but honestly just having so many people that understand me in one place. Just scary so many people don't know what's causing their pots.
@@mbparafighter it does indeed feel like impending doom which is something I have read about in journal articles. I am happy you found my video also. ☺️
@@mbparafighter I have heard of these yes. I hope the doctors have you on medications to help you reduce symptoms as much as possible. It sounds terrifying.
I have hyper pots and low blood volume, cardiologists who specialize in Hyper POTS have told me this. And hyperpots usually causes surges of extremely high blood pressure in my experience which results in going into to shock for me because of low blood volume. As I am not a doctor and only a patient living with Hyperpots I would suggest seeing a doctor that specializes in POTS to talk about this, everyone's experiences can be different.
I was fairly athletic before also. My doctor has suggested doing some exercise to help recondition my body while it is challenging, it is something I want to continue. Eating is different also, eating smaller meals helps me to not pass out at much, using my 30/40 compression stockings also helps me being able to stay up right a little more. I do a lot of things from home. Being kind with myself and knowing when to take rest days is vital. Even though I may fall behind on projects or miss out on things. Accepting life has changed can be hard , but also knowing it is ok to miss out on things because my health is the priority. Life changes and we evolve with it, being sick isn’t the end, it is an opportunity to learn and grow within the new challenges we face.
Hi, I’m in tears. I’ve never met anyone in real life that has this. I have suffered with this for 15 years. I truly hope you and everyone on here finds relief. I will share what I am currently on in hopes that it may help someone. I take propranolol 40mg x3 and Doxazosin 4mg x3. Every 8 hours I take both of those. I also have reactive hypoglycemia and take 100mg of Acarbose with every meal. I am open to answering any questions and I want to thank you for making your videos. While I hate to hear stories of anyone going through this, it helps to know I’m not alone. Thank you ❤
Thank you so much for sharing with us I appreciate it greatly would you like to be interviewed for the channel to share your story? HyperPOTS does suck but it is nice to know that we are not alone. I also have not met anyone IRL (like face to face) that has this. I wanted to share and talk about it more because there needs to be more awareness for it.
@@Villainari_ absolutely I would! Whatever I can do to help! I’ve never met anyone irl with it either. You are the closest I’ve come. I would love to let me know I’m in North Carolina ❤️
@@DavidBrackett385 if you want to message me on socail media and we can set up a zoom meeting that would be great. If you are still up for it. instagram.com/villainaricosplay
@@DavidBrackett385 I thought I replied to this. I can send you an email perhaps. I am not sure if there is a private message feature on youtube. I apologize for the late reply. I have been busy with documentaries stuff the last couple weeks as well as streaming on twitch, trying to get back into a bit of a schedule on there. If you wanna let me know dates and times that work for you we can schedule a zoom appointment. If you want, you can email me at arivillain@gmail.com.
I'm glad you've gotten help. I'm dx on propranolol but my heart won't chill. I sweat profusely. My all the cardiologist I've seen are beyond ignorant. They won't even do iv fluids for me. Told me I'm screwed and that's all the treatment I can receive. I have eds3 and gastroparesis. You'd think there would be more help by now
Wow that is terrible to hear, I am so sorry to hear your cardiologist is like that. Is there a way you would be able to see a different one? I sure hope either your cardiologist listens or you are able to find one that will. I some times do Sodium Chloride 1 G (tablets) and lots of water. The pills helps me but sometimes upsets my stomach if I do not eat before hand.
@@1jazzyphae I am so sorry to hear this. Doctors need to listen to patients. There is a messed up disconnect in the understanding of rare patients. You are in my thoughts and the right doctors are out there. Sometimes it takes a while to find them sadly.
Your symptoms are very similar to mine. 200/120 heart rate 110-130. I totally understand what you’re going through. Also, my skull cracked behind my sinuse cavity and part of my brain mushroomed out into my sinuse cavity with spinal fluid leaking out of my nose. Let’s just say the last 10years have been challenging. Having a doctor that diagnosed you and in some case backs you up for disability is a must.
I am sorry to hear of your experience but appreciate you sharing it with you, you are brave and I hope that doctors are doing the things needed to keep you comfortable.
Sounds like your injury mimicked Chiari malformation. Hopefully you've had good treatment plans. It sounds like you have good doctors.
From one potsie to another, thank you. We share mostly the same symptoms. My BP goes as high as 212/111 and last year March, it went from 140 to over 200 by just standing up within a minute. I was forced to stay at the hospital for 3 days and to make matters worse, was diagnosed with covid too while at the hospital. The worst symptom is that where my body can't calm down. I hate the sensation of feeling like something is crawling all under my skin. It's brutal but somehow, we survive it all daily. I am currently searching through the web to see what others are experiencing and what they are doing to at least, get some normalcy in their lives. This video helped. Thank you so much.
I am happy to share my experiences. I am sorry to hear you battle this terrible form of POTS. They put you on meds? I know for hyper pots there are two meds which can help one is called Ivabradine is a HCN channel blocker (this one has not been made available to Canada where I am from) and the other is the one I am on called Methyldopa which has been used for high blood pressure in pregnancy but has helped me get my numbers down. I understand the weird body sensations and the cant seen to calm the body down. I am sorry to hear you were diagnosed with covid19, has the infection passed?
@@Villainari_ Thank you so much for your reply. I am currently on a Benzo, a Beta Blocker, a BP medication and a SNRI to help with the body/nerve pain. I am pretty scared of trying new medications. It just makes my anxiety worse and in turn makes everything else worse. Covid passed. I didn't even know that I had it until I was diagnosed. I think I had minor cough for couple of day and a small rise in temp with those couple of days. Nothing to a fever level though. Sometimes, I wonder if the testing was reliable. I asked the ER doctor when I was admitted last year if the covid infection contributed to the HBP and she said, probably. I am just thankful that it passed. I pray that it gets better for all of us. Thanks.
@@machlays I understand the anxiety around trying new meds. I had such bad reactions to all other heart meds the one I am on now was my last chance and made a huge difference for me. I am thankful to hear you are medicated for it. I also hope things get better for all of us. I have hope for us that it will. 😊
@@Villainari_ Thank you so much for taking the time to respond. Really appreciate it.
@@machlays happy to respond. Diseases can be isolating and I want to change that. We matter. Our stories and lives need to be acknowledged as the chronically ill we have a strength in us and a passion of live we need to let shine through just as much as the healthy. 😊
Thank you so much for the vídeo. I have not been properly diagnosed, but I have all The symptoms...have been dealing with tem tem the last 4 years now. Horrible experience! It is good to listen to other People Who has the sabe problem. Sending good vibes to you.
Thank you for the comment 😊 It does such for sure. I hope you are able to get the diagnosis you seek. You matter. Your journey matters. It is horrible that it takes a while to be diagnosed. But we can do this. You are not alone. Sending good vibes your way too. 🤩
Compression calf sleeves and saline infusions can help.
The Alpha-2 agonists (Clonidine or Guanfacine) specifically target hyperadrenergic POTS by signaling the body to not dump so much norepinephrine and adrenaline into circulation. They've been wonderful for me.
I have hypermobile Ehlers Danlos syndrome. I also have digestive motility issues, which have been eliminated by Mestinon (Pyridostigmine) - plus this medication can help a bit at mitigating POTS symptoms.
Thank you for sharing this. I have hyperpots, hEDS and chronic migraines. Living with these conditions is really tough. It helps to hear what others with these conditions use to deal with theirs. I'm so thankful for the support of my great doctors and the support groups online. Wishing you better days ahead.
I am happy to hear you have a wonderful support system! These conditions are tough indeed but happy to hear you are well supported.
Thank you for this ! I have been dealing with this fir twice years now . Still in the diagnosis stage but drs are treating the pots symptoms only . I feel it’s going to be a long road ahead .
It for sure isn’t an easy road but you aren’t alone. I do hope the doctors are able to treat the symptoms you are having to help you along the way.
Thank you for sharing your story. Im piecing my daughter symptoms together.
Happy to chat and share information always.
It's hard to get s proper diagnosis. I'm trying to find a "movement" that knows where to knock. I'm exhausted and getting a bit hopeless. Thanks for sharing
Are you trying to get the hyperPOTS diagnosis? There are many forms of autonomic nervous system dysfunction but there is hope. I am not sure where you are in the world but here are some resources. I hope they help.
There is a clinic for autonomic nervous system dysfunction in Canada ucalgary.ca/news/first-autonomic-nervous-system-disorder-clinic-opens-calgary
There is a place in the USA which can be found here. stanfordhealthcare.org/medical-clinics/autonomic-disorders-program/autonomic-nervous-system.html
There is also some information here healthcare.utah.edu/neurosciences/neurology/autonomic-dysfunction.php
And some more information here nyulangone.org/conditions/autonomic-disorders
Fellow pots sufferer here. Currently taking a beta blocker which helps reduce the tachycardia but still feel symptomatic. I can relate to the feeling of not being able to relax. I want to try one of the alpha agonists medications to see if it could help. I feel so wired , like I am on 10 cups of coffee a day. It really is horrible. I’m just wondering how long have you been taking methylodopa ? Also, do you think there will be a time where you are rehabilitated enough to then wean off the medication or do you think you will have to keep taking it indefinitely?
I appreciate you sharing your story and what you have experienced with POTS. I think answering these questions would be better done in a video. If that is ok with you? Then I can talk about things more in-depth.
Did you get to try one of the Alpha-2 agonists Clonidine or Guanfacine? They've been a huge help for me. Much better than beta blockers for me, and fewer side effects.
Dehydration with hyperagernergic pots is likely worsened. I have hyperagernergic pots due to my paraganglioma. When dehydrated. Which is constantly...I presume due to the fact I urinate massive amounts at multiple times throughout the night. I believe There is a secondary pots syndrome in this instance. ( Hypovolemic pots). It's kind of like kicking a horse while it's down.
Also. I'm curious about how or why you mentioned that the pots cause the norepinephrine and epinephrine. I always thought it was quite the opposite as it is a syndrome not a disease. As in my case Paraganglioma secreting norepinephrine causing pots. However a number of diseases may cause your body to develop pots. Including vagal nerve injury and disease.
Because hyperpots causes high norepinephrine in the body it is what causes the sergers from my understanding. And my hyperpots goes with MCAS.
Thanks for sharing your story , do you also have polyuria? (Frequent urination?) That makes it hard to stay hydrated. Maybe it's compounded by high blood pressure against the kidneys, making them overactive, which is also the location to release the adrenals understress ..
Yes I do. One of the symptoms of HyperPOTS is feeling the urge to urinate every time you stand up.
@@Villainari_ thanks Ari for replying , I'm starting to feel like it's a negative feedback loop surrounding the kidneys , causing dehydration of electrolytes which causes blood volume loss - high blood pressure -POTS , high anxiety and super vigalance ( mistaken for hyperchondria) I went on a dash diet and my POTS got even worse.. doctors ignore my urinary and GI issues , and focus on the cardio symptoms only.. we need more research into this.. 🙏
@@shellterminal2022 happy to answer comments always. We do need more research into HyperPOTS for sure. I do smaller amounts of foods 30/40 compression stockings, meds hydration etc. Happy to share info and chat with others who face this. It is a hard journey, one I understand, because hyperPOTS is a beast. If ever want to DM me I have many socials, just let me know its you from TH-cam if you want to chat. 😊
@@shellterminal2022 I am sorry to hear diet they recommended didn’t work for you. Have you tried the sodium pills?
@@Villainari_ I've been doing 2-3 packets of Pedialyte and just eating more salt on foods, the DASH diet for high blood pressure is low sodium high fiber, caused bloating , more pressure against the bladder and kidneys.. it's like living in opposite bizzaro world..where everything they recommend is opposite helping you but making it worse.. I tried propanelol and it made me vomit, scared to eat large meals when I used to eat huge meals regularly , onset of increased POTS was statin treatment for high cholesterol, I believe statin caused overactive kidney and high blood glucose , further exacerbating my fluid losses.. it sent me to the ER three times for 170bpm and aFib and now they want stress test
Heart rate when sleeping is as low as 38bpm and sleeping blood pressure is 100/60. Waking pressure is 150/110 , I am 3 beats away from clinical POTS during tilt test.. aspirin and vitD helping me sleep, the insomnia, cold sweats, blood pooling in chest, its tough I see others who are bed ridden, so sad.. I can walk with vertigo but must sit after while .. I feel for everyone who deals with this and then told by doctors there's nothing wrong with you , that you have stress and anxiety... Like Women w/ hysteria..
I also have fibromyalgia and I do exactly the same with my words. Also, I’m being diagnosed at the moment and you sound like me 🤗
I hope the diagnosis process helps you to find some resources and relief from symptoms. I get tongue tied so much LOL
@@Villainari_ I have to write a list of what I want to know otherwise I’ll forget 🤗
I do the same for all my appointments or I forget things@@carolharper268
I've questioned if I had POTS before bc I get faint while standing, especially in heat off and on for years now. Then I started having heart palpitations unless I sat back down last summer. I also found out I had hyperthyroidism so I thought okay, maybe it wasn't POTS after all. But now for 5 months I keep having random what feels like adrenaline surges and idk why and it really stresses me out. Happens alot when I wake up from a nap od just random wether sitting or standing. Does that sound at all like pots?
The adrenaline surges are no fun, I sometimes am up all night because of it, and they do cause a stress reaction (in my experience, not a doctor but someone living with HyperPOTS). The surges happen anytime for me, the best way to test it is to get your blood taken while doing a tilt table test, for HyperPOTS or a Tilt Table test for POTS. I would recommend seeing a doctor who specializes in POTS.
I have the same symptoms. I have hyperthyroidism and POTS syndrome. I'm constantly in fight or flight mode.
i have it too!
HyperPOTS is no fun at all. I hope your blood pressure is under control.
@@Villainari_ yes! It is the heart rate and fatigue that is bothersome I have some other conditions, I’m having a surgery for a hernia but after that I’m going to focus on trying to see a cardiologist again. Last time I saw a cardiologist the guy was like “well it is what it is there is nothing we can do” … there are def different therapies that I can still try, I have hyperadrenic pots, I hate the feeling of the fight or flight chemical release when I’m literally doing nothing 😭 I’m glad there is a community of people, I actually saw some people who got long covid got differing versions of pots so it may become more common? Anyway appreciate the video. Blood pressure is higher when I stand but doesn’t go above 150 sys so not out of control. I have to wear compression stockings everyday
@@sarahok6589 I hope surgery goes well for you. For sure keep seeking out treatments which work for you. Hydration has worked for my as has compression and medication for my hypertension. My blood pressure was over 200 and my heart is enlarged. Hydration therapy has made a massive difference for me. I hope you can find a cardiologist who will be on your side. I am happy there is a community also. HyperPOTS sucks, I rarely sleep because of the fight or flight. There are some good books on the vaso vagal nerve which talks about how to relax the nerve and exit fight or flight. It is a process. I have hope for you that you will find a doctor that will be more open to helping you. And hope there will be more research soon.
Me too
Wow sounds like a extreme case, You do any laying exercises? And what about dnrs? I have more mild diff version pots but curious what else u tried
DNRS is expensive, so I have not done it. I work on doing things I love for the most part and living life; with high blood pressure, things are different. Compression stockings are great, and salt and fluid intake can help me; I am not a doctor but a patient living with Hyper POTS. Have you tried DNRS? What things have you tried?
@@Villainari_ little did I know I will get severe cfs.. what ended up helping me was Irene Lyon course. My nervous system was out of whack . I was fully disabled now walking again but still housebound ..
@@Villainari_ I also went went on low gluten diet and a lot more vegt and fruits and fat
@@Thelittleclipstore what is this course is it online? POTS is very disabling indeed and can be frustrating, I am happy to hear you have found something to help would love more info.
@@Thelittleclipstore has the diet helped with energy? Also what kinds of fats?
My endocrinologist diagnosed me POTS but kinda just left me high and dry. I didn't even know what he was talking about. I went to him for my hypothyroidism and anxiety/panic attacks and he diagnosed me with POTS after checking my BP and HR lying and standing. In my intake form I had listed issues with numbness and tinkling, heart palpitations and chest pain, shortness of breath, leg pain, and a bunch of other stuff. Between the BP and HR test he did and those symptoms he said, "You have Postural Orthostatic Tachycardia Syndrome. And I was like, "Wait? I have a heart disease?" (I heard the word Tachycardia) He told me no but never explained anything. 🤷 I stopped going to him after driving four hours round trip every six weeks. I found a local GP and when I had my records transferred over and he saw the POTS diagnosis he referred me to a cardiologist and neurologist. So now I have those two appointments coming up in the next couple weeks. Because of the way that I had been feeling I was afraid that I had too much salt in my body so I pretty much went salt free. After that though it seems like things or even worse than before. Now I am hearing you say to increase my salt intake LOL. I'm not sure what to do at this point. Sometimes my blood pressure is completely normal and then other times it jumps up to like 190/100. It will start at like 180/90 and when I see the numbers my anxiety kicks in and it goes even higher. And then my heart rate will jump up as soon as I stand up or start panicking. Even at rest my heart rate tends to stay in the 80s and 90s. I apologize for this being so long. I wasn't planning on writing a book LOL anyway, hopefully I will get some answers at the cardiologist and neuro appointments. Thank you for posting this. It gives me hope. ❤️
I am happy to share the hardships of this disease in hopes of connecting with others and helping other not feel alone. I am happy to hear this has given you hope. HyperPOTS is weird because of the hyper tensive moments and I understand what they feel like, my heart is larger then it should be because of being undiagnosed for so long. I do hope that your appointments are well. And feel free to DM me on social media or here if you need a chat. I am open to chatting about complex illness. The salt intake can help for sure so can having hydration on a regular basis. I get black outs because of hyperPOTS from doing nothing because the blood pressure gets high. You are not alone and I do wish you all the best at your upcoming appointments. Thank you for sharing with me I appreciate it a lot.
You might consider getting checked for chromagranin a, urinary metinephrines 24 hr, 24hr catecholamines... Renin, aldosterone.
Dr Dianna Driscoll has a great video she made years ago on this exact diagnosis. Highly recommend for anyone with this condition.
I have read the Driscoll theory. However, I didn't know there was a video do you have the link?
Dr. Diana Driscoll is who recommended Mestinon (Pyridostigmine) to treat POTS by stimulating the vagus nerve. She made an OTC supplement version of this medication, called Parasym Plus.
I've had a lot of success on the Mestinon, although I primarily take it to treat my digestive motility issues.
Any idea what might have initiated your POTS manifestation. I'm dealing with a lot of these symptoms, namely throbbing pressure headaches when standing, but I have no idea why these symptoms randomly gradually developed over the years.
I have two other rare diseases and have had cancer. My HyperPOTS goes with MCAS and EDS. What kind of POTS do you have?
@@Villainari_ HyperPOTS but in came on seemingly out of the blue and later in life around 25.
It can develop after surgery, a virus & some jabs as well
I am currently on Verapamil which helps, but I still have wild swings in heartrate and blood pressure when I am upright, I am hoping my doctor can get educated about this so as to help me.
Do you have compressions for when you are upright? I ask because my
HR was terrible when being upright and compression stockings of 30/40 really helped me. I am no doctor but living with it and trying things has helped make life more bearable for me and I want to share what has helped me.
@@Villainari_ I do have them, but the length of time i can tolerate wearing them is limited, I have Ehlers-Danlos Syndrome and so in addition to the POTS I have GI issues and my skin is incredibly sensitive, compression hose and leggings make me anxious because of all my belly pain. I may have to try wearing them with an abdominal binder or corset (which would probably be helpful anyways...) as it seems that if compression is equal over my abdomen I tolerate it better.
@@HouseKatArmy I understand I also have ehlers Danlos and the GI issues are no joke they suck. Happy to chat about anything and brainstorm. I hope you are able to try the abdominal binder and that it helps you.
@@HouseKatArmy The gastroparesis medication Mestinon (Pyrodistigmine) can also help to reduce POTS symptoms. It eliminated my chronic constipation and intestinal issues.
Where is a good place online to find compression stockings? I’m pretty slim and tall so unsure about fitting. Like almost as skinny as Taylor Swift so I’m not even sure what size that would be haha. I definitely want them to be tight
Online I am not sure I did order some online but they were really loose! Sorry for the late reply been dealing with a flare as of late. I use 30/40 compression and I get mine custom because of my thin legs/ankles. I am not sure where you are located in the world but in Canada there is a COOP medical supplies store but one has to go in for a fitting, you only have to go in once as long as you constantly order their compression tights after, they should be replaced every six months because they loose their effectiveness by becoming loser due to wear. If I find any online that are good I will share for sure.
I have this too and am untreated. It usually is brought on by viral illness. Then will decrease in severity after a few months. I just got COVID and am dealing with severe symptoms. I have constant panic attacks, SOB, can’t sleep (sleep apnea now, I think), blurry/grainy vision, etc.
I am sorry to hear you are untreated. I am not sure why youtube did not notify me of your comment. I hope you have found some relief for your symptoms.
Have you lost a lot of weight?
@@juliaarambula3153 no. I am looking into EDS as a possible cause. I think eagle syndrome and TOS might be what I’m currently dealing with - which brought about the symptoms
@@juliaarambula3153 I go through periods where I lose a lot of weight, but the weight is mostly swelling, so I swell and my face looks bigger than it is and when the swelling goes down I look thin again. I can gain from 10-20 pounds while I am in a swelling phase. I have been weighed by the doctors in two weeks and have gone up or down 10-20 pounds due to swelling.
Have they ruled out pheochromocytoma?
Yes they have.
Were these symptoms all the time or just occasionally?
I wouldn’t say occasionally, it really depends on a lot of things. In a flare it can be often. I experience symptoms regularly but do what I can to cope with them as they arise.
Thank Allah i dont have thee extreme condition with blood pressure and heart rate, mine normally go up when standing up or when i climb a stair, usually it gets normal within 2 to 4 minutes, but i have migranes, indigestion, chest pain for over an year now, and 2 months back i was having trouble breathing when walking, also had fatigue and loss of apatite.
also 2 weeks ago was having trouble swallowing saliva, saw an ent doctor, he did a barium swallow x ray and said there is no issue.
I have symptoms of heart faliure, throat, and lungs cancer.
Last year saw a cardiologist and he did blood and treadmill test and everything was fine, he told me clearly he has no idea why its happening. He gave me Ciplar La 40mg. This medicine works, it controls tachycardia by 60 to 70 percent.
I am happy to do here that medication works for you. I am not sure if it is available where I am at. Have the doctors helped you get relief from the other symptoms you are having?
Aren’t you supposed to avoid high salt with high blood pressure?
In most cases yes. But not with hyperPOTS I have low blood volume due to a complex illness. My autonomic nervous system is a wreck and I have low blood volume the salt and fluids help to bring the low blood volume up. This disease/condition is understudied. HyperPOTS is rare.
@@Villainari_ but it's impossible to have blood volume and high blood pressure if you have low blood volume your blood pressure will be low
@@yousadisadisa3091 It is not impossible because I have it happen, and I go into shock. The adrenals are involved in hyperPOTS. It isn't just one thing that causes something, and high blood norepinephrine in HyperPOTS patients are to blame for High Blood Pressure. As someone who lives with this terrible disease, and I had this information told to me by specialists who specialize in the diseases. I aim to share factual information in a world of misinformation. I am not a doctor, but I am a patient living with a rare and complex illness. It is rare, thus there isn't a ton of info out there on it. I want to help others living with this terrible illness who also go into shock from low blood volume, high blood norepinephrine causing stroke high blood pressures, and struggle to stay conscious at times.
Calcium channel blockers dont work, Propranolol doesn't work, Corlanor caused 207 heart rate on loop recorder(had an E.P study) Metoprolol caused heat intolerance so Throughout the past 10 years I keep going back to Atenolol which works great but now I have a positive ana (drug induced) and I can NOT stay conscious in anything above 76 ﾟF. Need to try something new medication wise, i want my life back 😪
Understandable for sure. HyperPOTS is immensely frustrating. I couldn’t do beta or calcium channel blockers myself. Do they have a new medication for you to try?
Have you tried the Alpha-2 agonists Clonidine or Guanfacine yet? Those two are the most specific at targeting hyperadrenergic POTS. I had the same bad experiences with those other medications you mentioned. Clonidine/Guanfacine have been amazing - I've been on both, and Guanfacine seems to work best for me.
Update ? What meds were able to help you ?
Who would people go to t ok find out the TYPE of POTS they have
In Canada there is an autonomic clinic. Cardiologists should be aware of the tests and should be able to send patients for testing or to an autonomic clinic.
@@Villainari_Hi! I’M in Canada, what is the name of this autonomic clinic?
@@justinebeliveau1346 it is called the Autonomic Investigation & Management Clinic
Wait, if you code you go to the ICU and you get admitted! It’s serious. Not fast lighting you as I also have hyperadrenargic POTS and it does feel like death.
HyperPOTS sucks, and people in the ER I was in had no idea what to do with me. It was not a fun experience. I was in the ER, and I found that because it isn't a commonplace illness that at times people are in disbelief of the symptoms even though my blood pressure is over 220/110. It hurts to have it that high. HyperPOTS feels like death, I agree, because of how fast the symptoms happen.
Death is probably the best description I have heard. I'm happy I found this video. Not in the misery loves company sense but honestly just having so many people that understand me in one place. Just scary so many people don't know what's causing their pots.
@@mbparafighter it does indeed feel like impending doom which is something I have read about in journal articles. I am happy you found my video also. ☺️
@@Villainari_ ever heard of Paraganglioma? Or pheochromocytoma?.... Try adding that to the mix. Every episode it induces could literally be my last.
@@mbparafighter I have heard of these yes. I hope the doctors have you on medications to help you reduce symptoms as much as possible. It sounds terrifying.
can i have hyperpots without high blood pressure
I have hyper pots and low blood volume, cardiologists who specialize in Hyper POTS have told me this. And hyperpots usually causes surges of extremely high blood pressure in my experience which results in going into to shock for me because of low blood volume. As I am not a doctor and only a patient living with Hyperpots I would suggest seeing a doctor that specializes in POTS to talk about this, everyone's experiences can be different.
Wondering how your lifestyle has been affected. My daughter used to be athletic but now..not at all.
I was fairly athletic before also. My doctor has suggested doing some exercise to help recondition my body while it is challenging, it is something I want to continue. Eating is different also, eating smaller meals helps me to not pass out at much, using my 30/40 compression stockings also helps me being able to stay up right a little more. I do a lot of things from home. Being kind with myself and knowing when to take rest days is vital. Even though I may fall behind on projects or miss out on things. Accepting life has changed can be hard , but also knowing it is ok to miss out on things because my health is the priority. Life changes and we evolve with it, being sick isn’t the end, it is an opportunity to learn and grow within the new challenges we face.
Hi, I’m in tears. I’ve never met anyone in real life that has this. I have suffered with this for 15 years. I truly hope you and everyone on here finds relief. I will share what I am currently on in hopes that it may help someone. I take propranolol 40mg x3 and Doxazosin 4mg x3. Every 8 hours I take both of those. I also have reactive hypoglycemia and take 100mg of Acarbose with every meal. I am open to answering any questions and I want to thank you for making your videos. While I hate to hear stories of anyone going through this, it helps to know I’m not alone. Thank you ❤
Thank you so much for sharing with us I appreciate it greatly would you like to be interviewed for the channel to share your story? HyperPOTS does suck but it is nice to know that we are not alone. I also have not met anyone IRL (like face to face) that has this. I wanted to share and talk about it more because there needs to be more awareness for it.
@@Villainari_ absolutely I would! Whatever I can do to help! I’ve never met anyone irl with it either. You are the closest I’ve come. I would love to let me know I’m in North Carolina ❤️
@@DavidBrackett385 if you want to message me on socail media and we can set up a zoom meeting that would be great. If you are still up for it. instagram.com/villainaricosplay
@@DavidBrackett385 I thought I replied to this. I can send you an email perhaps. I am not sure if there is a private message feature on youtube. I apologize for the late reply. I have been busy with documentaries stuff the last couple weeks as well as streaming on twitch, trying to get back into a bit of a schedule on there. If you wanna let me know dates and times that work for you we can schedule a zoom appointment. If you want, you can email me at arivillain@gmail.com.
I'm glad you've gotten help. I'm dx on propranolol but my heart won't chill. I sweat profusely. My all the cardiologist I've seen are beyond ignorant. They won't even do iv fluids for me. Told me I'm screwed and that's all the treatment I can receive. I have eds3 and gastroparesis. You'd think there would be more help by now
Wow that is terrible to hear, I am so sorry to hear your cardiologist is like that. Is there a way you would be able to see a different one? I sure hope either your cardiologist listens or you are able to find one that will. I some times do Sodium Chloride 1 G (tablets) and lots of water. The pills helps me but sometimes upsets my stomach if I do not eat before hand.
@@Villainari_ I've seen 4 and now looking for a new one.
@@1jazzyphae I am so sorry to hear this. Doctors need to listen to patients. There is a messed up disconnect in the understanding of rare patients. You are in my thoughts and the right doctors are out there. Sometimes it takes a while to find them sadly.