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12 years CH but new here (Read 795 times)
Twisted Image
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Posts: 4
Netherlands / Holland
Gender: male
12 years CH but new here
Jan 19th, 2016 at 10:40am
 
Where do i begin... In advance sorry for the bad Englisch im dutch if that's any excuse  Wink. I suffer from ECH or maby now CCH or E/CPH. (have to wait and find out) HC and S.U.N.C.T pretty much ruled that out. First attacks occurred when i was 19 years old (im 31 now).

Pacing up and down the living room at 3 a.m. for 15 to max 45 minutes 2-3 times a week. Thinking i had a braintumor. Pain levels where a straight ten. But it went. Young and naive and with occasional (cycles of) attacks i got 'used to it' knowing that it disappeared after 45 minutes max. And after a view weeks nothing.., not a worry in the world i just forgot about them. Maby it will just vanish in to thin air...

It didn't, so more cycles.. 24 years old my mother was very concerned seeing me in an attack and insisted me seeing the doctor and he diagnosed CH right away (rare for all the things i read about being misdiagnosed for years)! Got to admit i was partying and drinking (sometimes drugs) almost every weekend then. Stop this he said because meds for this condition are effective in most cases but (potentially) dangerous and interfere with alcohol and other drugs.

Slowly  Embarrassed i followed his advise and that helped or the cycle ended naturally. But if i had to take a guess it helped. Didn't drink for weeks on end. Some small cycles came regardless afterwards but the whole thing then was not (partly) life disabling in some way.

So to speed up things after a remission of 2 years mid November 2015: BOOM!! i got hit with a view 3 hour during attacks (KIP 9.5, 8.5, 7.5) *&^*!@ Its hard to believe but the first success i had in 12 years is 'busting' an attack with 2 very cold redbulls...12 years without meds... There will be people don't believe this i can understand but is the truth. I went beserk on the internet last 2 months searching for info and other ways then the common known meds. I don't like the possible side effects i can get from these. Better F*ng die for 45 minutes and go on with my life after then knocked out from exhaustion for hours because of these meds sideeffects (?). Also hard to believe but this is how i dealt with it for years.

But i don't want that anymore especially after the 3 hours attacks. So i found clusterbusters, D3 regiment, (need to figure that one out accurately) some method im currently trying but not so sure to mention it here, a doc and then a neuro, cold energy drinks, drinking lots of water and this site. Asked 2 times for O2 and still didn't got the prescription for it..why is it so hard for neuro's and/or doctors to prescribe O2!!? *pending*

My neuro didnt ruled E/CPH out but instead of starting with indocetamine that almost rules it out and is a mandatory diagnose method for E/CPH en HC (1 of 3), he wants me to take a triptan injection (if i have an severe attack) because he says its 99% effective on CH..?? IMO not so logic he just brought the possibility of E/CPH and the indocetamine up himself...

My last severe attack was more then 4 weeks ago and the last 'little' attack was almost 2 weeks ago... fingers crossed but i can feel the demon is still in my head but he is sleepy and doing nothing @ the moment. Scary times and me being hyper sensitive about it, paranoid fear etc etc.

Interesting that the things cheaper then the known meds for CH (there isn't really a med specifically made for CH i know) with the least side effects available in stores next door seems to be the so effective (also) in many cases.

What i also want off my chest is the (male female) ratio thing. Is that important to diagnose an individuals his/her symptoms?
If you got it you got it.. F* the (M/F) ratio. My neuro finds CH patients stubborn and i don't know he gave me a compliment for saying that i know a lot about CH or just politely said you are a smartass. (?) But the thing is i/we often are desperate and want relief and understanding not outsmart a doctor or/and a neuro. thinking shall i stick a knife in to your eye in to your brain and twist it for 45 minutes?! I don't want a robot doing his standard routine and want straight YES or NO questions. Example 'Is it more or less severe then before?' Can't say.. the answer is; its different this time.

MRI scan upcoming, blood has been taken for a test, next appointment another with the neuro i will try to get the O2 prescribed. Feel like sharing believing searching and now doing / trying something to get relief from this feels really liberating. thnx
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Als het niet gaat zoals het moet, moet het maar zoals het gaat.
 
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Peter510
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Don't give out... But
don't give in.


Posts: 966
Wexford. Ireland
Gender: male
Re: 12 years CH but new here
Reply #1 - Jan 19th, 2016 at 1:04pm
 
Hey Twisted Image,

Welcome to where you belong.

You got a lot off your chest there and that's great.

Please let us know what you are currently trying. If you're not comfortable in the open forum, send me a PM. It might be something you should not be trying.

Read everything you can on the D3 Regimen here. You will find it discussed and explained in detail in the Medications & Treatments section under the thread "123 days pain free...".

It is doing great for a lot of us and does not involve prescribed medicines. Don't be afraid to ask questions. There is a lot of experience here to tap into.

Looking forward to hearing from you,

Peter.
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