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An Update on Cluster Headache Treatment Options
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- Опубліковано 15 сер 2024
- Dr. Tesha Monteith talks with Dr. Matthew Robbins about guidelines for cluster headaches, an update on treatment opinions, and so much more.
Read the related article mentioned in JAMA Neurology.
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3 ppl have killed them self in my family due to cluster headache suffered 15 yrs finally oxegen has helped so much im a new man new life high flow oxegen works very well almost instant relief dont give up high flow oxegen works and safe
So sorry for your loss, glad you have finally found some relief. My partner struggles and I would do anything to take it away, going to give oxygen a try asap
I was episodic for 10 years, last year I went chronic. So I am grateful for any efforts being made or cluster sufferers.
How to convert epizodik to hronic ?
You are women or men?
@@vojkanilic3759 I am a man. I don't know how it changed. Last year when my cycle should have been over, it wasn't. Only a week or two here and there without any attacks since then...
@@matthewfunk6658 i have hard septal deviation nose i suspisons to this my epizode claster hedche chendzing wheder its triger in my case and you what is a triger alcohol? Smokeres?
@matthewfunk6658, same here. I also was 10 years episodic and without warning it went to minimal 8 attacks every day (chronic). At the moment I am for chronic for 10 years. I am treated at a university hospital and use Lithium, Imigran injection, Oxygen. At peak moments I get Prednison and Oxycodon painkiller. As you, I am so grateful for any effort that is made with regards to cluster headache. Wish you all the best to carry this heavy burden! Greetings from the Netherlands!
Imitrex, Excedrin, and Tylenol 500mg is my preferred cocktail. I get mine during winter and they come EVERYDAY with my left eye drooping and tearing along with my left nostril being congested. I get restless and hot showers usually help soothe. All this started in 2016 😫
I’ve been having episodes for more than 10 years. People don’t understand the amount of pain they cause. It’s debilitating. Mine always follow the changing seasons. I recently went around two years without a cycle and then out of nowhere, this year, I’m having another bad cycle.
Mine come on at the end of the day when I stop being active. If I stay going, they tend to be mild or not come on at all. It’s soooo frustrating. The dread of them coming on just sucks. It’s life altering.
Such a desperate affliction. We need so much more research. With that being said I do appreciate the awareness and progress since my first one in 1985 when I was seen as a drug seeker and told to take Tylenol. Psilocybin is hopeful ❤
I'm on triptans and lower doses of verapamil and which Monday I'm going to ask for higher doses. So far my episodic cycles seems to get worse every year with 3 to 4 a day for weeks to sometimes over a month. I take multivitamins every day along with magnesium, and vitamin d and sometimes melatonin at night and none of that has helped. How is it possible to get psilocybin and be able micro dose? The cluster cycle I'm in now has gave me 2 of the worst headaches out of the 10 years of having them. I have literally cried so much from feeling of no hope at all and the thought of losing everything because the pain is so bad and I have had multiple kidney stones and had surgery because of them but no doubt the clusters are different level of pain that the strongest man alive probably wouldn't be able to handle them either.
@@jasonbarthle9660 this is worth a try if your body can handle it. Ask for 120mg of Prednisone for 5-7 days then taper down and off. I've had about 80% results aborting my entire cycle like that. It's always a good idea to have oxygen on hand at 12-15 lpm through a non rebreather mask or sumatriptan for attacks. The mushrooms I ordered the kit from one company and the spores from another, if you Google it they will likely show up. It took about 6-8 weeks to harvest then I dried them out on a food dehydrator, grinded them up in a blender, then stuffed empty capsules I bought on Amazon with the dust. That way you know exactly how you're taking. It didn't take much for me, like five capsules which wasn't enough to freak me out by any means. I did that three times in six months then had a five and half year remission. I just got through a six week cycle and thought I was going to die! I had one that kept coming back as soon as I thought it was gone. It's just been a really bad cluster cycle this time. Finally I begged for prednisone and that's what I'm taking now. I am growing more mushrooms ASAP tho. When all else fails, because insurance will only pay for 9 Sumatriptan treatments a month, I use a big bag of frozen peas pressed against my head. It's unbelievable, I know.
@@jasonbarthle9660 I can't remember the affective dose of Verapamil but it's much higher for cluster than migraine
Also from what I understand the calcium channel blocker should be used as preventative medicine not necessarily in the midst of a cycle
@@ponzo1967 I have been taking verapamil for about a whole year now. Its lower dosage but I'm going to ask to up it tomorrow.
Very difficult to treat, a helpful summary
Kings College Hospital in London are using one injection, for about a year now. Check it out. I haven’t had it but I have another cycle of CH due this winter.
Please help me.
I DON’T KNOW WHAT IT IS BUT MISREY DOES LOVE COMPANY WITH CLUSTER HEADACHES ANYTHING THAT HELPS WITH LESSONING THE SYMPTOM’S IS A. POSITIVE. THEY ARE DEBILITATING, I’M. A PRISONER IN MY HOUSE & IT SEEMS TO BE PRESSURE CHANGES FROM WINTER TO SPRING, COLD AIR TO FACE IS A TRIGGER. A DARK ROOM AND MY PUPPY DOG KEEPING ME COMPANY IS GR8. ANOTHER TRIGGER IS HIGH DEFINITION VIDEO, FROM TV TO COMPUTER SCREENS. THE INDUSTRY KNOW AND ARE AWARE OF THE SYNDROME & THE DUE NOTHING TO INVESTIGATE. STAY AWAY FROM VIDEO GAMES THEY ARE TRIGGER MECHANISMS.
I suffer from these cluster headaches and its the worst pain I have every felt
how did you get relief
I read that the FDA approved Emgality for cluster headaches.
when I was taking Topamax my headaches went away for years. I still get them now and im 45 yrs old. my own findings is these headaches are affiliated with breathing and oxygen.
hey man,just out of curiosity do you mind sharing what dose of topamax where you taking?and did you understand any side effects of using it? i suppose you are episodic right ?thank you.
Topamax made me see triple blurry blobs..
Topamax made my lips swell like I had injections in them.😢
Cluster headche is very very painful i can tell i and my daughter have this but my daughter is 11years but suffer for this cluster headche since she was 7years.
Poor thing. I got my first one when I was 15. I am 49 now. It's much more structured these days but this cycle is different. It would not let me sleep
😢 mines seem seasonal since around 16 - 17 years old im 35 now the migraine medicine was the wrong option because the eye and nasal issue is dead on no longer than 3 hour at a time. Ill be in talks with my doctors immediately, because these have been so life absorbing... I never thought youtube university had the answers cuz google didnt all these years
Mine are everyday 2-7 times a day. Nothing has worked, and no Dr' will see me. I haven't had a dr. Fur 4 yrs. I'm not very nice some days
My heart rate and blood pressure was in the toilet on the heart meds
The block on the occipital did not work I had cluster 20 min later
I need a Dr here that would see me during my clusters
I've been diagnosed 15yrs ago with cluster tic syndrome by Dr Steven Graf Radford at cedar Sinai in la. It started right after FESS sinus surgery in 2001. Is there any new treatment for CTS? THANKS BRAD
This guy knows his cluster headaches.
I am chronic and take a cocktail of Verapamil, Topamax and Lithium. If I go without 2 or 3 doses, a cluster begins. That being said, I get hit in spring and fall with a terrible period of headaches and see my pain manager for an Ocipital Nerve Block injection; will be good for about 6-9 months, usually. BTW, verapamil alone does not help me.
Tyvm for that comment I thought I’m going crazy cause I take verapamill alone and I don’t see any hope for that condition 😢
When did u start feel a relief?
As a chronic you are in pain most of the day and when attack occurs it’s like the highest peak of pain too? 🙏
How much lithium did they prescribe ?
Verapamil has changed my life
The doctor won’t help me about my cluster headaches who do I go see???
See a neurologist my friend
Go to the ER on onset of a cluster and there they can refer you to a neurologist.
Been dealing with these since my early 30's. Verapamil... was taking 480 milligrams a day for nearly 4 years. It didn't do jack but made my teeth loose due to bone shrinkage. Topamax or "dopamax" didn't do anything either. Same with the botox injections. The only thing I've found that helps is raw oxygen. 15 to 21 lpm. These doctors aren't interested in a cure... rather than treatment. If you cannot get a prescription for 02, rent a large 02 tank from a welders supply. You can rent one for 5 hrs for roughly 200 tp 250 bucks and refills are under 50 bucks. There are attachments around 25 bucks that you can use to refill smaller more portable tanks. It's the same as medical grade oxygen but don't let them know what you're going to use it for. Legally they cannot sell it to you because it's not medical grade if you tell them what you are doing. Sorry I'm writing a book here but I'm a chronic sufferer for nearly 20 years now that have 2 or more attacks on the daily that you can almost set a clock to. I have read studies in European countries that sufferers like myself that over 90% go into remission for weeks to months microdosing magic mushrooms. I haven't seen them since my teen years but would be very tempted to give it a try than be these so called doctors guinea pig.
Emgality is amazing for cluster headaches
For some
@@Frostifieddid it not work for you? I might start it soon, but hesitant
Most of us cluster heads are worse off after pharma. Almost none of us on clusterbusters would rec emgality You should join, great group of people. @@htz70
Plz can You donate me whit some small amunts. I have link in my UA-cam accont. Im sick forme 15 years and it's not bether. 9 months it's my shorts cluster. 5-6 time.a day is standard. Each atakt 40 to 90 min.... oxygen medical marichuana and sometimes inecjt frome imigram. All not refunded in my country 😢😢😢
Vitamin D Regimen.
how much?
Very informative it just reinforced what I already knew. CH is such a black hole. The brain is just beyond human comprehension. 🧩