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        Cluster Headache Help and Support >> Cluster Headache Specific >> So many Meds
        
(Message started by: Miss Melissa on Aug 19^th, 2006, 2:40am)

Title: So many Meds
Post by Miss Melissa on Aug 19^th, 2006, 2:40am

I have been dealing with this for a while now, about 20 yrs (not a newbie, use to be Millie the episodic, but I lost my password or forgot it). I was pain free for about 6 months, but for the last 3 weeks I have been living in Hell with these HEADACHES. I am wondering if anyone has tried marijuanna for these things? No I am not a drug seeker, because I have a cabinet full, I just don't like how they make me fill. I am presently taking 480 mg verapimil, O2, imitrex nasal and injector, but I have taken topomax, depacote, lithium,elavil,xanax,maxalt,caffergot, amitriptline, etc :-[

Title: Re: So many Meds
Post by georgej on Aug 19^th, 2006, 3:00am

Hi Melissa, and welcome....or welcome back, rather.

Everyone's different, of course, but cannabis is widely held to be a trigger for CH by a majority of...um...afficionados here.

I don't medicate, so I don't claim any expertise about other medications. I'm sure that others who are more knowledgeble than I will be responding soon.

Best wishes, and here's hoping your cycle will be a short and unbumpy one.

George

Title: Re: So many Meds
Post by Miss Melissa on Aug 19^th, 2006, 3:04am

It seems that most everyone has different triggers if any and try many different things and I have too, but I am getting very tired of this all I must say. I am feeling kinda disprite right about now, because you really don't have anyone to talk to about this thing, except you guys and girls. These people that i have around me just don't seem to understand.

Title: Re: So many Meds
Post by georgej on Aug 19^th, 2006, 3:19am

on 08/19/06 at 03:04:42, Miss Melissa wrote:

but I am getting very tired of this all I must say. I am feeling kinda disprite right about now, because you really don't have anyone to talk to about this thing, except you guys and girls. These people that i have around me just don't seem to understand.

They simply can't understand, and I've never discovered an analogy nor a metaphor that could give them any more than a glimmer of it. It's like a wall that cannot be climbed, cannot be seen through, and cannot be gotten around. This is, indeed, one of the only places where others can truly understand what you're faced with. This place is treasure.

I know what you mean about being sick of it. I'm episodic as well, and have been getting predatory visits from the beast since 1966. Cycled twice a year for 20 years, and am now down to one cycle every three years. Perhaps they'll go away one day, but I don't believe for a second that I'm done with them. I won't make that mistake again. I thought I was finished with them the first time I went a year.

Best,

George

Title: Re: So many Meds
Post by prcole18 on Aug 19^th, 2006, 4:18am

Miss Melissa
I'm in the same boat as you. i'm getting very pissed off with this right now, have been going through hell for the last 4 weeks.

Im on 480mg verap & it seems to be doing sweet FA. The only thing that slightly works for me is bloody Pred & im desperate to get off this shit. I started to taper down last night from 60mg to 50 & have had 2 KIP 9's (maybe a coincidence). I've been permantly on pred practically for the last 4 weeks to try & get some PF time but still get them.

I am desperate to try and find some preventive but nothing seems to work for me.

Hope you get some PF time soon

Paul

Oh P.S marijuanna is a trigger for me

Title: Re: So many Meds
Post by roy21302 on Aug 19^th, 2006, 3:53pm

Hi Melissa,
Keep your chin up, hope your present bad patch will be short lived. I too am well and truely fed up with all the different Meds that everyone keeps throwing at me. Believe me over the last 30 years I have tried every one you mentioned and some more too. It all right for the quack to say stop this and try this but they don't feel the pain caused just by changing pills. Then you find the new stuff does little or nothing to help. A Neuro year ago said that the treatment was a bit like playing darts, your the dart board they throw the pills(darts) some stick for some people and not for others. I still find my self sitting rocking,crying, in pain in the middle of the nights--------still using ice packs and ice cold water I had 30 yrs ago------stuff Docs----Cheers Roy :-[ PS Weed is a bad experience for me it made the pain seem too have surreal proportions!!!

Title: Re: So many Meds
Post by DavidEH on Aug 19^th, 2006, 6:23pm

Unlike others here, it is not a trigger for me...

It helps me relax, and have the stomach to eat... If I don't smoke, I can't eat (mostly due to the side effects of the relpax (its killing my stomach, nauseous) and the ch..

Everyone is different though...

In terms of relief... There is some, but it doesn't come in the abortive way.

I've had a ch hit after smoking. However, It was a short hit, around a 7.. To be honest, its the only time this week, I was able to go out afterwards... I belief that night I had another hit however, and that one was around a 9. This was about 7 hours after smoking. I didn't have the relpex though.

For me at least, it helps with the side effects of the ch and the medicine I am taking now. But, again I have to stress, everyone is different, as can be seen it is a trigger in some.

Since I've begun the relpex yesterday I haven't gotten a major hit, although I did have shadows and other effects of the ch (anxiety, soreness in temple, eye area, shadows).

These however, are not present after I smoke.

I would not recommend this to anyone (due to legality), but I would say that my quality of life in the last two days is better then the 3 before (when I didn't have the replex or weed)... Also, I can actually sit down and work on music and writing (after smoking), this was not possible earlier this week.

The replex seems to stop a full blown hit (if taken hours before the hit, in me at least).. I take two a day, one in the morning and one at night (2 a day max, so says instructions).

The weed stops the rest (shadows, sore stomach, anxiety, etc)...

Title: Re: So many Meds
Post by Karla on Aug 19^th, 2006, 6:46pm

Your verapamil could go up as high as 960mg for what I have seen posted on the board here and from personal experience. So if you are still having ch you may want to ask your dr to up your verapamil. Personally I have heard that pot does more harm than good for the majority. I wouldn't mess with it. Good luck and hope you find some pain free time.

Title: Re: So many Meds
Post by Miss Melissa on Aug 19^th, 2006, 8:37pm

That is part of my problem too, upping the verapimil. I don't have high blood pressure and the effects of the 480 mg is more than enough for me. It is hard for me to get to my O2 while at work, and most of the stuff that I can take I choose not to take at work. I don't smoke at work, but WHEN I GET OFF I don't think about anyone or anything but me. I am trying to find the bullet per say to slay MY dragon. It is hard for me to except that it is okay to take meds that make you crazy at work, but because of the legality of weed, just to have it in you is a no no. But no one understands the pain, oh Lord, before and after, just the thought of it makes me feel really low. There has got to be someone out there for us! [smiley=huh.gif]

Title: Re: So many Meds
Post by chewy on Aug 19^th, 2006, 9:58pm

Quote:

I am trying to find the bullet per say to slay MY dragon.

Imitrex injection.

Title: Re: So many Meds
Post by Miss Melissa on Aug 19^th, 2006, 10:10pm

Got it! ;)