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Eli.G.

Is anyone has been cured from C.H. forever

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Hello , I am female 37 years old that suffer from Cluster Headich since 5 years ago. I learned a lot and tried everything but never heard that someone stoped attacks forever , please if you know for that case , write how you did that or how that person succseded and how it is possible. 

My last pain attack started 24 th of February and last one was 3 days ago and maybe this cicle is finished and next come in June just like last year. knowing that it’s coming and how it will be , that is really so bad for quality of life. Everything stops , I can’t do nothing and just pray to God to give me strength to wait until 100 mg of imigran starts working and unfortunately make me like zombi all day . Sometimes , I wait even 40 minutes,  and with all pain it’s like forever .  I really want to find tretmant that will cure my C.H. forever , I can’t belive that all people who got this have it for all life , maybe someone break a circle forever , please write 

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Hi Eli!

There is no cure, to my knowledge. Some people are granted long remissions, but we don't know why that happens either.By 'long', I mean ten years sometimes. So, there is that.

Read thru the Forum and I suggest that you spend some time on the numbered threads in the Clusterbuster Section of the board. It will explain a lot.

What have you taken for your CH so far? Besides Imigran. Is that in a pill or injectable form?

I strongly suggest that you read some of the info on the D3 Regimen. It is amazing how much a few vitamins can help!!! All are over the counter vitamins in the States.

ATB

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Hi Spiny, thank you for replay. I tried all medicines that are usualy used for CH , in 2 different countries I sow the best neurologist and I tried : cortisone medicines,immigrant and other nose spreys, all kind of pain killer for head..... nothing helped , i just had bad side effects (zombi feeling and heart beating ). Magnezium I took a lot in june last year and didn't help. I noticed that melatonine is not working since  I have CH.  Before CH when I traveled and changed zone time, melatonin made me sleep nice and since I have CH , melatonin doesn't make me sleep at all and when I finally fell a sleep,  I woke up after max 5 hours and that is strange because I sleep a lot usualy (when there is not period of CH.)

I haven't try Kudzu extract and I  will try it. thank you for advice of D3 regiment, I  read it and everything exept that I have tried. I don't agree that triger is alcohol or cigarets,  ( only summer few drinks and my attacks are allways in february and some year in june too ) , I allsow do sports allmost everyday (exept when attacks starts) .

Psilocybin is so hard to find,only ones I find and  that stoped attacks for 2 years, but as I said i have problems finding it and to don't mention how doctors or people look on that. they don't understand what CH people are going trought  and they judge badly .

oxigen bottle with mask-  nothing, ( 3 times i did, only once after 15 min stoped , I  didn't nothice any improvment ) and country where I live they don't give oxigent bottle for free for CH people and if you buy private is arround 2000 dollars ,so I had to go to other country where is chepear (250 dollars ) and big bottle was enought only for 3 attacks ( 3 days) and as I said only once I notice that attack was shorter then usualy. 

 

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I am not surprised that pain killers did not work. They normally don't work for CH!

Melatonin does help many, but the dose needs to be higher, say 20 to 25 mg. The standard dose of 3mg will not do anything much. But higher doses can help. Try 9mg for starters if you are concerned about being groggy in the morning.

The D3 really is pretty great for us. It is best to get your D3 levels checked by a blood test first if possible. If you can't do that you can start it without. Just be sure to take all the co-factors. The other ingredients.

Yes, people will make comments like 'Take an aspirin' or some other over the counter pill for mild pain is a very common statement. It is pretty upsetting to us, but they don't know. :(  They do not understand that even potent pain killers will not work.

Alternative treatments are discussed on the closed boards 'Share your busting stories' and 'Theory and Implementation.' Only members have access to those.

Drinking some caffeine - an Energy Drink, coffee, etc - can help at the very beginning of an attack. O2 does not help unless used properly with the right mask. I am so sorry that it is not available to you. Try putting your feet in very hot water, as hot as you can stand, for relief. Keep the water hot! I will sit in it and just keep adding water to the tub as needed. Breathing cold air helps many. If it is cold, go outside and exhale fully, then inhale deeply. Repeat. When the pain drops then breath normally for a few minutes before going back inside.

We have members world wide. Where are you located? We may have a member or two from there who could be more helpful with your local situation. And in some places Truffles  are legal. They will work too.

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On 15/3/2018 at 10:59 AM, Eli.G. said:

Hi Spiny, thank you for replay. I tried all medicines that are usualy used for CH , in 2 different countries I sow the best neurologist and I tried : cortisone medicines,immigrant and other nose spreys, all kind of pain killer for head..... nothing helped , i just had bad side effects (zombi feeling and heart beating ). Magnezium I took a lot in june last year and didn't help. I noticed that melatonine is not working since  I have CH.  Before CH when I traveled and changed zone time, melatonin made me sleep nice and since I have CH , melatonin doesn't make me sleep at all and when I finally fell a sleep,  I woke up after max 5 hours and that is strange because I sleep a lot usualy (when there is not period of CH.)

 

 

Hello, I have a question about your comments. When you say "Heart Beating", do you mean a feeling of heartbeat when using Imigran (sumatriptan) or is that feeling prolonged in time after using it? Thanks and best regards.

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