Facebook Live: Cluster Headaches with Dr. Deborah Friedman
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- เผยแพร่เมื่อ 11 พ.ค. 2024
- Cluster headache is lesser-known than migraine, widely misunderstood, and often described as the worst pain known to humans. View our Facebook Live chat to learn what's on the horizon for new therapies.
- วิทยาศาสตร์และเทคโนโลยี
Hi, my name is champ from Philippines. Your video is so informative. I was diagnosed with cluster headache 5 years ago and been suffering an excruciating unbearable pain during specific months from September - February yearly. Having this kind of sickness is isn't so easy and can be deadly. It strikes me 5-8x a day. The worst part of it is the medicine is quite pricey. Prayers to everyone suffering this sickness.
#KeepPraying
#FightClusterHeadache
Talk to your dentist about how to reduce the pressure in your jaw during the night. It reduced my pain by 50% to get this "rubber thing" (Dont know what its called in English) during the nights.
I suffer cluster headaches and when I tell people it gets me so frustrated when they say 'oh I have headaches aswell'!
I've had them since 2003 and am still trying to get my family and friends to have some understanding what I'm going through.
No matter how you try to describe it the only way people will understand is if they have one themselves.
So true....
Family usually dont understand. My mom starting to understand that these are not regular headaches even though it has the name headache in it because of my reaction to them. Find a group of people or videos like this. We understand exactly how you feel. I've found so much comfort in this video it's crazy
I couldn't agree more.
Been there, done it, got the T-Shirt. Trying to explain it to non-sufferers is an exercise in futility; they listen, they smile, they nod their heads, but all the time they're thinking "My God, what a drama queen".
I'm glad I waited until the end .. that brought it home. Thank you!❤
I have it and yes she describes it very accurately.
My story. 25 years old right now, experience my first cycle at 21. At 20, went thru a sh*t psychological experience that left me with depersonalization for about a year. Headaches followed after. Idk if its because my brain went thru so much psychological trauma, not sure. But my headaches FORTUNATELY come usually about every 18 months or so. Stay for 30 days usually. Everyday for those 30 days I get this "hot needle poked in my right eye over and over" sensation. My eye is blood shot. The nerve next to my eye is THUMPING like crazy just pumping blood at an incredible rate. They would last about 3-4 hours in total with 2 hours of excruciating pain and the rest is somewhat moderate but still hell. Tried sumatriptan 50mg, even double the dose but would make the pain more acute than anything. Little bit of nausea but no throw up. Right nostril dripping like crazy.. I've found out that caffeine works a great deal, use drink coke while pacing back and forth in my bathroom in the dark. Would hop in an extremely hot shower not to wash but just letting the hot water hit the back of my neck. Some relief from that. Doc prescribed me verapamil but very low dose, 100mg SR. Starting treatment when I go to the pharmacy today. Wanted to try an injection or something as they seem to be more fast acting.
But overall, I'm fighting. And you're fighting. We all are fighting this shit. And idc what anyone says, if you've dealt with this and you still here kicking? You're a freaking trooper. Hats off to you. This is some of the most painful sh*t I've ever experienced and I salute anyone thats still standin here while suffering from this.
Load up on caffeine, my advice.try to exercise when it first start coming on if you can, especially cardio. Sometimes that helps me bypass it for the day. You not in this alone I promise you! I thought i was, but obviously I'm not. You guys are like fam, we got it!
Nice words there, Appreciated
It's my badge of honor
Dear people, i know what it feels like. O my Lord, do i know. Please do not lose hope. It is the worst pain ever, i mean ever, but it will go down. I lose hope so many times, but know the pain will drop eventually. Please, dear people, please take good care and find a neurologist like this super good doctor, if possible. Dr. Friedman explains so well and to the point. Lots of love and well wishes for your health, from the Netherlands
Wow she’s spot on in explaining. I’ve had them my whole life and always in the fall season. Nothing works in preventing them. I’ve learned putting your body in extreme messures help with dealing with the pain. Run an EXTREAMLY hot shower and buy or fill up bath tube with as much ice as possible and run water. Then go back and forth between the two until it’s done. The hotter the shower and the colder the ice bath the BETTER.
Cluster headaches, I just started experiencing it since a week. Yesterday night I was crying so much in pain. Just then I noticed that crying actually helped me relieve me off it, I felt liberated for half an hour before that motherfucker again attacked me.
Dr. Friedman is one of a small group of experts on cluster headaches. We're lucky too have her at UT Southwestern.
When I was in year 8 I began experiencing cluster headaches I’m still traumatised from the pain honestly, the only time in my life I became suicidal. I still have anxiety about them returning with the same pain intensity and it’s been years. I now suffer from migraines but my cluster headaches haven’t returned, I’m grateful to have migraines. Immigran which I think is the summatriptan she referred to, has been helping me a lot! If I begin to suffer from cluster headaches again I’m researching a doctor who specialises in them and knows the difference between cluster headaches and migraines as most doctors don’t and the last thing I need is another doctor lecturing me about stress management. -.-
I was left with nerve damage over my eye small price to pay it just constantly sweats
Pain is excruciating your description is exactly what it is rocking helped me
So very accurate. Oxygen and prednisone are my saviors. Always comes on September through February on left side of face and always 3:15am.
You have them for 5 months straight?
I've been dealing with them for 15 yrs now. I am losing the will to fight these debilitating head aches my god they hurt soooo bad. How I'm I suppose to keep a job?
I know your pain I have this sińce I was 13 years old and now I'm 33. And I'm in pain right nowe but don't give up!!!!!! The relief will come
I was getting them for 10 years until i heard a doctor on youtube saying dmt worked, its very hard to get, long story short, it work havent had one for four years this october.
@@liamo300 what's dmt?
Please everyone listen to me , eat some mushrooms or LSD ,this is not a joke ,I have had clusters for over 20 years now and about 8 years ago I finally discovered that these are the only things that work AND WORK INSTANTLY !!! The side effects are not as bad and are of shorter in duration than prescription medications,,I prefer the magic mushrooms because the ride is about 5 to 6 hours compared to the acid which is more like a 10 hour "RIDE" ,
@@jerryvinson3699 your right i had them for 10 years then started smoking DMT and no more chusters headaches
Great video! God bless you! Keep up the good work!!
Thank you! Will do!
I am 26 now, I have been suffering with cluster headaches since I was 18 years old. They come on average every 2 years and last 2 months. They have been getting progressively worse with age. The pain is indescribable, and if you are a sufferer like me, you are also a fighter. We can fight this thing together, because life is so precious. Please reach out to me if you need any advice, I will do my best to help others. Peace and love always xxx
My attacks started when I was 25, and I got something from my dentist that I dont know what its called in English? rubber brace or bite splint? The pressure in my jaw during nighttime vanished and the cluster headache vanished. A few years later the headache came back with the worst pain I ever experienced, I screamed in the ambulance and the morphine took away the worst part. I started using this "rubber thing" in my mouth during the night and after 2 weeks the pain was gone! Now Im 48 and its once again ambulance rides with morphine! Do you have any suggestions how to how to deal with itm this time?
@@drjerry5389 Hi Jerry, I also feel tightness in my jaw and neck when I get an attack - lways on the right side of my head. I find that a light massage overnight before bed using a jade stone and coconut oil released some tension. I also did acupuncture for my neck, light stretching before bed. I hot bath also helped me relax during/after an attack. Try to increase the quality of your breathing during an attack - have you heard of the Wim Hoff method? Give it a try!
I hope your headaches improve with time, let me know how you do x
Great video! 10 years of Clusters for me. Mine are pretty bad, this video will help me when I meet with my neurologist. Working with my primary care physician, we tried triptins and Topamax (Anti Seizure Meds) and ended up with a combo of fioricet and methocarbamol that works really well but you have to get ahead and stay ahead of the pain. If you don't, you're screwed. Hope this helps someone. :-)
My dentist saved me. Talk with your dentist about how to reduce the pressure in your jaws. My attacks were reduced by 50% with his help.
I get these and damn these hurt like hell.
Thank you for such an informative video. I suffer from Cluster Headaches, Trigeminal Neuralgia and Migraines. Is it common to suffer from more than one of these terrible afflictions?
This was so helpful..
I'm a woman dealing with clusters and have smad4/hht so that may be why? Its very painful i will say.....ty for the informational video💗
I developed floaters in my eye after a series of cluster headaches. I used to do dynamic morning salutation routine that could terminate headaches within two minutes. I call them frustration headaches because I notice there has been an environmental/personal issue that I can't resolve that correlate with headaches.
Glad I found this. I’ve suffered for about 25 years with cluster headaches. Been trying to get in home oxygen and insurance just will not allow it. SumaTriptan works great but you can’t take the shots daily so you basically have to pick 5 livable days in a month as 5 vials is a 30 day supply. Love to try the non invasive device.
It is a horrible experience. I get migraines and cluster headaches. Sometimes if feels like someone is trying to tear your brain apart. For some reason I get this more often on Sunday evenings and Monday mornings. Is always on the right side of my head. A lot of people don't understand! It make one feel useless. No amount of words can describe the unbearable pain that comes with it.
In my each session or cycle I try to find a new way to get rid from this headche.
And I always try to observe wat leads to this headche on me..
If you can trigger sneezing at vary starting of headche you may supress the headache
in 2004 i had my first attack and in 2008 a cva from q bloody avm now it started agqin after 11 years☹️
I think the comment about women being misdiagnosed because cluster headaches tend to be associated with men is very interesting. IMO the same is true about men and migraines - men tend to think they are just having bad tension headaches and migraines can go for years without being diagnosed. A cluster headache is what drove me to a neurologist - wakened in the middle of the night by the worst pain ever (spike being driven into my left temple). Under a lot of questioning, I realized what I had thought were severe sinus headaches were actual cluster headaches and migraines (the biggest difference being 1) cluster headaches always associated with my left eye/drooping eyelid, and 2) severity (cluster headaches are intolerable). I only recently (past few weeks) realized that my getting up and pacing was also a symptom.
Currently using sumatriptan (usually works best with aspirin/acetaminophen/caffeine). I'm taking Ajovy - it has decreased the severity of migraines, but not too much regarding the frequency (15-20 times/month or more). Usually only get cluster headaches a few times/month (but at ~11AM and 1AM).
I definitely have both chronic cluster and chronic migraine. But, what still puzzles me - the chronic aspect started suddenly in the summer of 2013.
Been dealing with it since like 11/12 and I'm now 37. Never been to the doctors before about it and now I just deal with it .
I try running by treadmill or clear area for 3 minutes, pain will go immediately or after while breathing. But for sure I go to see doctor's for preventive medication.
I'm a patient of cluster headaches and yesterday during my episode, I punched my right eye so bad that's its all black (like seen in movies).
Ive had cluster headaches sense I was 15 I’m in my late 30s and just 3 years ago I got them so bad I’ve had suicidal thoughts nightmares a lot of sleepless weeks not nights “WEEKS”
it has flipped my life completely upside down.
I can’t work. I think they should have a disability for us that suffer from cluster headaches. No one really understands it the doctors don’t understand me all they can do is try to give you something to control it.
Most of the times it don’t help and if it helps it helps only sometimes. In the comments someone said “magic mushrooms”I don’t recommend to do unless you want to end up mentally disabled. It’s not something to take lightly. I need help with my clusters. And I pray to god to help me
WHISPER WHISP hang in there, you are a champion for surviving.
Thanks, it really means a lot to me. I wish I could feel like a champ I really do. but Honestly i don’t. These cluster headaches are killing me. I feel weak I don’t know how much longer I can do this I’m losing everything job friends my relationship is hanging from a string my partner has had enough and she don’t understand it. I feel lost with out anyone being able to help me not even the doctors. If you suffer from clusters. You can understand.
Had them for a while too, recently got to suicidal levels of pain myself.. when it happens I just don't know what to do other than scream and cry and clench my fists, pull my hair, bang my head against the wall.. nothing ever helps... No medication I've used helps. It's living hell. Amounts of pain to where I'm in pure terror and desperation.
I microdose mushrooms to where i don't feel them at all.. like, 1/10th of a gram basically. I've also found it helps me focus and has eased my depression by a lot. I wouldn't recommend them simply because they're illegal and recommend a thing like that would leave me liable but in my own experience it's the only thing that's worked.
@@wh18perlocs21 My brother has had them now for 18 years, not the constant ones, he does have pain free periods. Recently I found that aluminum in the brain damages the hypothalamus. The only way Aluminum can by pass filters is by injection, vaccines. The aluminum can stay in your body and not even do anything for 20 years or longer. There can be trigger times it starts to be felt. It must be detoxed out of your brain so healing can take place. Magnesium needs to be taken and some form of chelating like taking ascorbic acid which is vitamin C. Medication of any kind only suppresses this. Medication can cause more damage in the long run. Good luck!!!
This is what I have been going through for years. But highflow oxygen helps get rid of it real quick...
It sure does. I bought myself an oxygen concentrator...had to use it last night as a matter of fact. Highly recommend this form of treatment for my episodic clusters. Good luck everyone and God bless
@Cindy Freemire which one did you buy please?
I've had episodic cluster headaches for years, very painful. I have taken things for it that never seem to work. I will get them at 4 am and the only thing that works for me is a cold can of Coca-Cola it knocks the cluster headache away in a few minutes. they should do some studies with Coca-Cola
I think it's the caffeine in it. Same thing for me. I use to drink a a small bottle of coke when I get em to suppress the pain. Sugar content turned me off though. Switched to caffeinated black tea. 2 mugs of it at onset. Works magic. Currently getting over today's headache
Been using Sumatriptan with great success for the last 2 years. On the onset, I take one and within 15-20 minutes I get relief and within 30 it is gone (until the next bout, usually around 12 hour cycle). I recommend you try it if you suffer from these, as you know the hell a cluster headache is. Unfortunately, it took around 8 years of suffering, misdiagnosis, and several doctors, before it was prescribed. I get these in the Spring and Fall, around the times when daylight shifts through the seasons. This makes me believe that the "pineal gland" is involved somehow, as it is the timing center of the brain. I would be curious to find out if there have been any studies in these regards.
My cluster headaches just started back this morning after two years of being headache free. I was using Sumatriptan during about a 6 month bout with them in 2017. Have you noticed any neck pain or stiffness when using it? After my second bottle it almost started feeling like my neck was grinding when I turned my head or looked up/down. Luckily it went away after I stopped using it but I found it to be rather odd.
nice to see you smile believe me i cant smile or laugh coz the pain is so bad and painfull left eye and temple thick eyelid and neck runny nose and often fomitting im 49 it started when i was 44 and banged my head to the wall i have it 6 days and some take 8 hrs last was on the 4th of jan 2020 i have multiple times a year 4x 5x 6x you never know when it hits it was so painfull i wanted to die i realy thouhgt i had a brain tumor i had a scan and no tumor found idont drink alchol i dont do drugs i dont smoke anymore for 15 years atm started to get a wet left eye so i think it will come soon i have gon injection and i have astma long sicknes
Bring out Mr Skull.
I started getting mine around the age of 30. For the first 2 to 3 years I was getting them 5 to 8 a day with no break. Freaking horrible. I’m 52 now and I just get them one month a year but they are still horrible.
Missing the fact that someone with chronic loses their family, friends, life...
Suicide begins to look comforting
Yeah, I was also surprised there were very little questions/answers relating to the social/psychological impact of this traumatic condition.
I do randomly get them especially when stressed but fluticasone nasal spray is a definate trigger for me although my doctor believes there is no correlation. It was prescribed for post nasal drip. I used the spray 2 nights in a row and started getting cluster headaches everyday for about 2 months. 2 years later i tried it again, (thinking maybe the doc is right) and bam! The cycle began again
Try the fragrance free version of flonase
Had episodic cluster headaches for about 28 plus years now . I notice I get mine around winter , however as I get closer my 40s now I notice that the breaks I have from them are longer and they are getting less intense in pain
I’ve also noticed mine are become less frequent and less painful. Although sometimes I wonder if my pain tolerance has increased. I force myself to try and do stuff while I have them otherwise they take over my life. Sometimes I can push through...most of the time I lock myself in a room, bathroom stall etc until it’s gone.
Do you think that Cluster Headaches are related to Impacted Wisdom Teeth in anyway?
Ive had these for 20 years , everything she said was dead accurate
Im fortunate that im episodic , for anyone out there who are chronic, no one will ever know the pure hell you endure , Facebook has alot of fantastic support groups
I suffered from a cluster headache. Yessss almost nothing helped. Tylenol and ibuprofen sometimes. In the beginning I would bang myself onto the wall or hit the side of my head. Sinuses and stress makes it worst. I would take cold showers, cold baths just to make it stop and it does helped help relieves. It comes and goes, it’s like a mind of its own. My eye feels like it wants to pop out. I had to take CBD or edibles to help.
I have headache upper the left eye about 2 inches. Not around the eye. Pls tell me is it cluster headache
I have had clusters since I was 40. I am a woman 57, and I have restless leg syndrome, and cluster headaches. Could there be a connection? They tend to happen spring and fall mostly. I described them as contractions that increase to unbearable then decrease to functional. They bloom in moments. Triptans help very little. Fioricet helps with magnesium! It is hard to explain that I am fine one moment, then in so much pain the next. My clusters started after a tooth extraction broke my upper jawbone.
Fioricet is my only relief from the pain of cluster headaches.
I have been suffering from this condition since I was a kid and I'm 40 years old now - I really don't know how I have managed to get this far. But it really can make you lose your will to live. Hoping that I see a medication or device to reduce the pain. A complete cure is a fallacy
Hi I been having it since last Wednesday and I haven’t been eating for a week or more and I’m feel so weak, I need to know what I need to do. I cry so hard because I’m in pain. How long does it take to eat again? I trying drinking Vitamin D and I been throw up like a volcano 🤦🏻♀️ I went to the Hospital in Plano and they said to me you are fine and I told them did you check anything on my brain and I don’t have cove19. They dismiss me just like that, I told them I’m in pain and they said just take Advil, they didn’t bother to check my blood test or my pee, I just wast my money for nothing at emergency
My cluster headaches are triggered by my sinuses. I usually sit in the car with the AC on or go in the living room with the AC blowing cold. That usually helps me. It stops everything after a while.
I can feel my nose stopped up, and then it switches back and forth. My symptoms or; sensitive to smells, jaw hurts, teeth hurts, sinus in the back of the nose, back of the eyes, my left side temple is the worst, feeling fatigue, getting chills, bright lights, ears real sensitive, runny nose, eyes watering, and mouth get very slobbery.
my remedy to help me is being in the AC and try to eat and drink a little something if you can. I hope this helps somebody out there who suffers like me. Because medicine doesn’t help...sad. 🙏🏾
No brother it is the other way, your sinus are incidental to cluster headaches. I have the same problem been to ENT and neurologists but still sick. So now I avoid perfumes and sprays, AC is my nightmare, have to be indoors all the time
Oh you said triggered. I didn't see that. I think you must get oxygen cylinder and when you experience any sinus pain use it to abort
Thanks for sharing! Best wishes.
J R Smith
www.thedoctorstv.com/articles/can-a-nasal-bone-spur-cause-migraines
www.thedoctorstv.com/videos/could-the-cause-of-your-migraines-be-in-your-nose
www.click2houston.com/health/teen-has-surgery-for-severe-headaches_20151123152407862
www.click2houston.com/news/surgery-helps-girl-with-consistent-migraines-return-to-normal-life/34768902
@Chad Gold are u ok now?
I need to show the 11:00 min mark to the 11:45 to my doctor because I'm a woman who suffers from these and have some features. I have also suffered a concussion a few years ago from a car accident. Mine switches sides but is almost always on my left side. I'm usually in pain to the point where I'm kicking, screaming, crying, writhing with my eyes watering, insane amount of mucous production to the point where I'm constantly spitting large amounts out... It gets to the point where I'm in pure terror of the pain itself and feeling a complete sense of utter desperation and helplessness. I hate it. Hate it hate it.. ive had it so bad recently that one made me lose most of my ability to speak coherently and it also lasted for 2 1/2 hours, stopped for 1 hr and came back with a vengeance for another 1 1/2 hrs before I could finally lay my weary head down to sleep. This was just two nights ago for me and just thinking about it makes me cry and get scared.
@PLATINUM VIBORA yeah, that sounds exactly like what I experience.
I feel your pain. It’s horrific. I hope you are feeling better now.
i get 3 month cycles during which i am extremely run down / feels like auto immune disease.. is this common?
Any three month cycle is going to run you down to the point of not being able to function in my experience. It is auto-immune in the sense that it is your own body fucking with you in the most painful way possible. Good luck, and keep the faith.
My brother has had them now for 18 years, not the constant ones, he does have pain free periods. Recently I found that aluminum in the brain damages the hypothalamus. The only way Aluminum can by pass filters is by injection, vaccines. The aluminum can stay in your body and not even do anything for 20 years or longer. There can be trigger times it starts to be felt. It must be detoxed out of your brain so healing can take place. Magnesium needs to be taken and some form of chelating like taking ascorbic acid which is vitamin C. Medication of any kind only suppresses this. Medication can cause more damage in the long run. Good luck!!!
I have chronic CH. If I get a headache, I take lithium 250mg and the headache is gone within 2 minutes.
I’ve just started my cycle about a month ago. Somedays I have up to 4 attacks. I really can’t bare it on those days. I don’t know if anyone else is the same but I can tell I’m about to get one about 20 minutes before it hits. If I take 800mg of Advil right when I notice that I can usually avoid them. The only problem is when you have 3-4 a day taking that much Advil can cause other problems. So sometimes I choose to suffer through it because I can’t take that much. Anyone who has these knows the dread before you get one. It’s like knowingly walking towards a saw blade towards your eye. Recently they’ve been getting so bad that even for hours after it’s gone I have a residual pain in my head. It’s like it’s done permanent damage or something. However, after I sleep and wake up I’m back to normal...until the next headache hits.
I am very sorry that you suffer like this, I see that in my family member. He also has residual pain and there are periods where he has 4 attacks per day. He also decided not to take painkillers because they damage the nervous system, liver, kidneys, etc. and you can't take more than a week or 10 days. I just want to tell you that we have found that there is a relationship between histamine and these pains, and that the excess of histamine has to do with the insufficiency of the DAO enzyme. That is why we are trying steps to reduce histamine and help the body produce DAO. Maybe it works for you too, I hope.
but what is the cause of them?
My ex-husband had cluster headaches for years. We thought it came because he came back from Viet Nam. He would always get them on his left side and he would lock himself in our bedroom and told me no matter what I heard, do not come in. This was in the early 70's. What all the doctor's did were almost barbaric !!!! He was a smoker and an alcoholic. I left him after 6 years. Now our son has cluster headaches on his "left" side also. He using BC powder, 1000mg of ASA and uses my 02 He goes into his dark quiet room and comes out about 1/2 - 1 later and the headache is gone. I am happy to hear that he can get 02 for his cluster headaches. As you know BC powder is very old. But this seems to work for him. He can get them at any time of the year. He is also a smoker, trying to quit and he does drink beer. But not like his father. I hope this might help other people with their cluster headaches. Oh, my son is now 45 and has been getting them since he was about 25 years old. Same as his dad. My heart goes out to all the suffer's of these terrible headaches. I have personally seen what they can do to the person that is having them.
My husband also got cluster headaches around age 27 , heavy smoker and drinker, died at 44 from cancer. My son was diagnosed with Cluster headaches at age 26. Now at age 54,he stills suffers horribly during each "cluster -season". which can last up to 6 months with multiple headaches daily. We need to form world wide Group to seek help for this debilitating CONDITION. IT is an unrecognized tragic illness with no real help available.
I suffer from really bad cluster headaches with tension headaches on waking up the morning as I lift my head from my pillow. Or during the day. Then I end up having a seizure as I have epilepsy.
I had seizure when i was a child now i have headaches …maybe they are connected
I HAVE HIGH HIGH PITCHED LOUD TINNITUS AND IT IS GETTING LOUDER AND I CANNOT FIND THE SOURCE AND NO ONE CAN HELP ME , HELP ME HELP ME ?????
- please try 9 mg of melatonin an hour and a half before you go to bed -
- it has to be taken daily and continuously -
- this dose ie 9 mg to 15 mg - helps reset our (cluster heads) Circadium rhythm -
- have been taking it for the past 15 years -
- to abort and on going cluster headache - applying/spraying capsaicin into the nostril on the side of the pain helps a lot
Hi, thanks for sharing. Please tell me if taking melatonin you were healed. I have a family member who suffers from this and has tried many things, but none have worked for more than two years. Thank you.
I am interested in the website associated with the clinical trial that was mentioned at the end of the video? Also, it doesn’t seem fair that when procedures are available that it is still almost impossible to get help. Example, I am a chronic “cluster head” for about 7 years... my insurance won’t help at all (blue cross) with the spg blocker. They claim experimental. My neurologist (Shands hospital in Jacksonville Fl), wants to charge $3500.00 a session for something that takes literally 1 minute to perform. With like you said, may help if all all only a few weeks. It’s literally extortion. Where is the hope? Nothing I have been prescribed is helping.
have you tried oxygen treatment.....it saved my life
Ken Moses
O2 works for me and has turned my outlook around .
I was fortunate that the proper diagnosis only took 30 days and 5 dr visits ( that’s when I took charge)
As one other person stated
The Dr’s don’t seem to deal with the
Psychological effects of this
Self-worth,restlessness ,extremely irritability,and lastly but most importantly Proper pain management ~ I get the After episode headaches that even are nowhere near ( not even ballpark) to the cluster pain last for hours and completely annoy and keep me awake . So even less sleep 🛏
allen hall I’ve been using oxygen for about 5 months now, about 3 large tanks a week. It’s usually my 1st “go to” and it definitely seems to reduce the length and scale of pain. I’m really trying to seek out healthier preventative measurements.
Hang in there, dude. I wasn't diagnosed for 12 years. Then all sorts of ineffective treatment. My situation is improving, I'm not entirely sure why.. Try to see another doctor, and keep the faith.
Try this yoga exercise. Morning salutations routine, you perform it quite quickly and headache could disappear before you get to the tenth round. Breath in through the nose, out through the mouth. You don't need to be a follower of yoga philosophy to try it.
IF' or When I get my break, I have a hangover feeling, sometimes might feel Strokey.. Tar CBD, I rub it on that nerve, I think it's helps. Anyone have a like hung feeling? Oh Ya, big knots and ma neck is a mess, lumpy . HELP ‼️😀😀
Does anyone know of a support group for Cluster Headache sufferers.
Facebook has handful of great support groups, they are a WEALTH of knowledge on different things that help
I always get my cluster headaches at night while I'm sleeping but never while I'm awake. Why is this?
I have discovered the root cause of migraines and cluster headaches are caused by abnormalities in the nose. When you lie flat during sleep the tissues in the nose swell and touch the abnormalities and trigger the trigeminal nerve. The one question I ask is if the migraine wakes them up at night. If so I KNOW they will have the abnormalities I can fix and relieve them for good. Send me a sinus scan. 713-795-0600
www.thedoctorstv.com/articles/can-a-nasal-bone-spur-cause-migraines
@@kevinsmith-kq6ec but why this happen on specific months. Like in my case February or June.
Rupesh Chaudhary it likely has to do with allergies to something during those months which cause the tissue in the nose to swell.
@@kevinsmith-kq6ec I'm 100 percent agree
Anybody only get them on waking and during daylight hours ?
Yoo oo she saying tumour in some cases,
I'm fucked upp
so verapamil is negatively adviced?
Which I dont understand. At first she said there are no real evidence that verapamil will stop future headaches and then says that's its the most preventive treatment prescribed. Confused? Doc just put me on verapamil today.
+1 for the SPG block - give it a try, can be a life saver
Started 27 years ago.
No more since 6 years ago.
Source of my clusters was due to subcontious muscle tension.
Treatment that I accidently stumbled accross:
Multiple tiny amounts Homeopathic (mix) muscle relaxant injections directly into the "Trigger Points" (or knots) located in the sore muscles on my back around the shoulder blades, on the shoulders and in the neck.
You can trace the source during a Cluster episode, starting from your temple, round the ear, down the back of the neck, onto the shoulder and also round the shoulder blade by pressing into those sore muscles.
This treatment is cheap and the most effective.... But, does not make money for the Doctors, Neurosurgons and Pharmaceutical companies who fund the "Research". Therefore they would not be interested in homeopathic.
Therefore, what I have said here is very brief & to the point.
I used to have cluster headaches all the time not chronic but seem to come in the fall and stay with me for about 3 months and I experienced anywhere from 3 to 6 a day my last experience was in 2009 when I woke up about three hours after sleep in excruciating pain and left me exhausted it didn't go away until 30 minutes before going to work in the morning what you left me exhausted the whole day I ended up having an accident that day 30 minutes before getting off work and ended up cutting off a finger but ever since that I have not experienced a cluster headache sense losing my finger could you explain why that is and why it happened but I do not experience no more cluster headaches since losing my finger which I consider a blessing in disguise since I experienced them from the age of 16 to 31.
@PLATINUM VIBORA I know what pain we shared, I believe mine were triggered to stress, not so much of struggles of life stress but stress on my body from physical activity and not eating regularly and healthy, I started in a family trade, floor installing, at 17 and at that age I was smoking that whacky tobaccy(weed), sometimes we would work right thur lunch and finish late at night and were so tried, we would skip dinner, but we always eat a good breakfast, in the flooring businesses we were always keeled down on the floor so it was very hard to work with food in your stomach, so the strain from heavy lifting, and the fall season played a factor I guess,well I thought, when I got married at 24 in 2004 I found out I had very bad high blood pressure, the Dr told me I had the blood pressure of a 60 yr old, so it made sense when I would get a cluster headaches I would lay on my left side of my body on top of my left arm until it went numb from cutting the blood circulation which took about 15 minutes or so you know I would slowly turn on my back I could feel this flushing motion from the blood circulating again, about 5-10 minutes my headed. Lesson with the pain but not so much the pressure what later on in life about 2009 when I finally got diagnosed with cluster headaches which I had to tell the doctor what it was that I had and what I need to be treated with and one of the medications was a calcium blocker which Narrows the blood vessels which is in a way I was doing by cutting the blood circulation off of my arm years ago, but you just buried and I have not had one cluster headache having a hint of 1 and I believe that when I severed my finger it's severed the connection that was causing my cluster headaches crazy as it may sounds, and see when I used to get my headaches I used to feel pain in my left wrist but it was my middle tip of my finger on my right hand thet got cut off but we know now that the nervous system is very complicated you can have a pain in your back but it wouldn't mean that you had hurt your back you could have been something from you springing your foot or twisting your elbow I never looked into what it really was that made me stop having my headaches but I rather not look a gift horse in the mouth I just thank God I don't experience them anymore and pray for God to help those who still are having them.
Use nazivion drops in nose... Relief in 1 minute
If you want to help why don"t you give a patient a blood patch. You are a provider than can test my theory. I know that this will be the answer. I hate the fact that no one has tried this yet. If it works this can be your legacy and these people can stop suffering like animals!!!!!!!!!
Wat is this blood patch theory
A who? What's that
Yoo y'all crazy or what, I'm 14 and it just started 2 days ago,and reading the comments I'm kinda scared,i thought it will be over and y'all be like"i had sucidal thought" is this all real or just exaggeration
That shows that you do not suffer from Horton's headaches (cluster headache), maybe you only have migraine, that's all and it has nothing to do with it. That's why suicidal thoughts seems like exaggeration for you.
Seeds of the shrooms help, as well as kudzu for preventing. Need more research. Steroids work but are hell on your health
If anyone can help I had a cluster for 4 days strait without stopping
H e d 0 r a H see a headache specialist. Sumatriptan pills (100mg) help but take a while to take effect. Unless you know when ur cluster headaches will occur it’s very hard to prevent with sumatriptan. If you can get sumatriptan injections (zembrace) they will stop the pain within 10 min in my experience. There’s also a new drug I was prescribed which can break the cycle, called emgality. 3 injections that supposedly take a week but will break the cycle. Hope this helps.