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        Cluster Headache Help and Support >> Cluster Headache Specific >> Through the years!
        
(Message started by: LadyElaine1 on Nov 7^th, 2006, 11:11am)

Title: Through the years!
Post by LadyElaine1 on Nov 7^th, 2006, 11:11am

I have had clusters for 25 years, 20 was chronic. I went many years not knowing what was happening to me. The only thing I was given was pain meds. I went through pure hell. I had 13 series of shock treetment, they thought it was all in my mind. I had all my top teeth removed they thought it was my teeth. The pain was so bad everytime I got hit, I just wanted the pain to stop, so I took any drug they gave me. It didn't work just made my pain worst. Think its bad fighting a cluster without meds. Try being doped up and trying to fight one. Its Hell. I finally found all of you. When I came here I was in bad shape. I tried verapamil, and imitrex and just about anything people told me about. I was so glad when I found imitrex I sure believed in it because it took my pain away fast. That was untill I found out that it effected my heart. One heart attack and I said no more. Thats all it took for me.
I have since stopped all meds, as far as clusters prevention and abortive. It was awful ! For three weeks I just knew I would die. I made it. To my surprize I was better, the attacks were less, and the pain level was very low. i said yea the cycle is ending thats all it is. The next cycle came I was in pain. I cried and fought without meds. I cried. Then a friend talked me into using o2 and I got the o2 to late the cycle stopped the day I got it hooked up.
This cycle my clusters came and I have only used o2, and nose strips at night. I get hit at night around about 2 am. I get up take a Excedrin, then push the coffee botton as I walk out to the porch and hook myself up to the o2. I suck on it for a good five to 10 minutes. I don't even have to rock from the pain I just sit and suck ;-) ! Then I come in when the pain is gone and have a cup of coffee. Then I head back to bed. I always wake up with that sore feeling in my neck so I take a Excedrin Tention along with my daily meds Fish oil, B-12 and V- C. My day goes along just fine, the B-12 and the Excedrin pick me up so I am not tired, the Excedrin Tention takes the soreness away. V- C doesn't hurt and the Fish Oil helps my cholesterol.

This has been the least painful cycle in years. I feel like its because of the o2 and the fact I am not taking lots of meds. I also have cut way back on smoking. I am not a drinker so that has never been a problem.

I don't know if these are the reasons I am having a easy time. I am not telling anyone to stop their meds. I am just sharing what I think has happen to me. I sure wish I knew. I would love to be able to post II found the answer.
I will tell you all during cycle try the breath easy strips on your nose. Put one on and sleep in it. I swear it has helped me a lot.

Title: Re: Through the years!
Post by E-Double on Nov 7^th, 2006, 11:30am

[smiley=hug.gif]

Elaine,

I gotta tell you that we are onto something......given many say that meds made them worse and it appears that it is so much easier to just use an abortive like O2 without using a preventative or medicinal abortive.

In March I finally was able to complete a 16 week slow taper off all of my meds.

Life got easier immediately.
My cycle never broike but it is much easier/cleaner to me.
Nothing lingers.
I get whacked and I'm over it.

I still feel that people need to do whatever they need to do to live a functional life but more and more I think that our bodies just need a break from all of the meds that are supposed to make it easier for us.

I never used meds until 2004.
Cycles were always very short.
Introduce meds and I've had a continuous cycle until March 06.
Come off of it and though it hasn't stopped I do get a few days off everyonce in a while.

You are one tough cookie and I wish you the very best :-*

Title: Re: Through the years!
Post by thomas on Nov 7^th, 2006, 11:48am

I feel the same way.

Title: Re: Through the years!
Post by MJ on Nov 7^th, 2006, 12:57pm

on 11/07/06 at 11:48:21, thomas wrote:

I feel the same way.

Ditto, me too.

Title: Re: Through the years!
Post by Jobette on Nov 7^th, 2006, 1:22pm

I do feel that some of these meds cause the headaches to change and stay longer and even makes them more intense. Just trying to get through this double cycle, back on prednizone taper and up the verapamil. I really don't like all the drugs either. They have the monster running all over my head I wish I could just blow him out of my nose or something!

Title: Re: Through the years!
Post by NovellRed on Nov 7^th, 2006, 4:31pm

Me too. All I use is O2 and coffee.
Had these things for 30 years, been through all the meds. Hospitalized 4 times. Discharged from the US Navy after 18 years of active duty. Life was miserable.
I took charge of my own treatment. It is so much better now. Oh yea I still get them, 3 times last night, but with just the Oxygen I get relief and there are no after effects.

Title: Re: Through the years!
Post by thomas on Nov 7^th, 2006, 5:15pm

on 11/07/06 at 16:31:57, NovellRed wrote:

Me too. All I use is O2 and coffee.
Had these things for 30 years, been through all the meds. Hospitalized 4 times. Discharged from the US Navy after 18 years of active duty. Life was miserable.
I took charge of my own treatment. It is so much better now. Oh yea I still get them, 3 times last night, but with just the Oxygen I get relief and there are no after effects.

Have you tried melatonin?

Title: Re: Through the years!
Post by NovellRed on Nov 7^th, 2006, 5:26pm

on 11/07/06 at 17:15:48, thomas wrote:

Have you tried melatonin?

Yes I have. It seems to make them worse. :-[

Title: Re: Through the years!
Post by thomas on Nov 7^th, 2006, 5:29pm

[quote author=NovellRed link=board=chspecific;num=1162915894;start=0#7 date=11/07/06 at 17:26:12]
Yes I have. It seems to make them worse. :-[/quote]
How long before bed do you take it, I find that 2 hours before bed is the optimum dose time for me.

Title: Re: Through the years!
Post by keithr1024 on Nov 7^th, 2006, 5:51pm

I agree with the med thing i've taken so many meds trying to get relife from these things and it seems to only drag them out longer keep strong

Title: Re: Through the years!
Post by BobG on Nov 7^th, 2006, 9:25pm

Good post, LadyE. I believe the same way you do.

Title: Re: Through the years!
Post by Linda_Howell on Nov 7^th, 2006, 9:30pm

Hush now.... GSK and others will go out of business if we all go med free. That will just break my heart of course. NOT

Title: Re: Through the years!
Post by georgej on Nov 7^th, 2006, 10:32pm

First off, I don't want to seem as if I'm trashing medications. I'm not. I'd be the first to say that the decision to medicate or not is simply not an option for some. It's a matter of survival.

I'm lucky, and I know it. My episodic cycles are pretty brief and uneventful compared to those that some of you deal with.

That said, I haven't used any of the contemporary medications for CH--verapamil, imitrex, lithium, topomax, etc. Back when I was taking meds, I was given Periactin, Sansert, caffergot, and a cocktail of pain medications--Darvocet, Tylenol 3, etc., etc. I stopped taking them when it became obvious, to me at least, that the medications were actively making things worse--increasing the number of attacks, specifically. The pain meds made me feel woozy and rotten, and truly didn't do much of anything good at all.

I've been unmedicated for CH since the mid-seventies. I haven't seen much of anything here, as far as medications go, to make me change my mind about that. I'm not convinced that some of the newer approaches are any better than the old ones.

Has going unmedicated worked? Well--I still get CH cycles, but they've always been pretty much the same. I know clearly when they begin that they will end at around "x" time. I've never had a cycle that went on and on. As time goes on, the cycles get farther and farther apart.

Sure, I know that this is anecdotal, and that it's only one person's experience--but if it were your experience, would you not also be unwilling to mess with it?

I take melatonin, magnesium supplements, and calcium supplements. I believe that melatonin has helped to reduce the number of nighttime hits that I get, without making things worse otherwise. Does magnesium help? Don't know, really, since I've only taken it through one cycle. But it doesn't seem to hurt.

I will likely get an oxygen set-up for the next go-around, and will certainly be using some of the very valuable coping techniques I've learned here, but I'll be very hesitant to try to "do" anything about the CH attacks other than that.

At this late date, I don't want to take the chance of making my CH's worse by treating them aggressively.

Just one person's reasoning through his own experience. For what it's worth.

Best wishes,

George

Title: Re: Through the years!
Post by taraann on Nov 8^th, 2006, 8:16pm

Here Here!!!!!!!!!!! I agree too, meds made me worse I think, I was episodic till I got on prevents and aborts now I've been chronic for years....even though I've tried going medfree it seems the damage is already done. I'm on the verge of going the clusterbusters route after many years for considering it.

Title: Re: Through the years!
Post by Phil L on Nov 9^th, 2006, 9:14pm

Roger that!

Title: Re: Through the years!
Post by sandie99 on Nov 15^th, 2006, 5:45am

Thank you Elaine for starting this thread. Thank you all for your stories. :)

Reading them confirmed my own belief that some of the meds neurologists subscribed me might have made my cycles longer, hits harder and life more difficult.

I haven't taken any neuro subscribed meds since spring 2005. My ch kit consists of Red Bull/its generic equivalents, caffeine tablets, Vicks Red energy tablets, anadin extra and ice cubes.

So far they have worked like a wonder when I needed them and when the only side effect is staying up little bit later, that's nothing in comparison to the other side effects I've had during the past few years.

Still, every clusterhead must decide what kind of treatment is the best for her or him. I'm convinced that there is a treatment which will work for each head.

Best wishes & PF days,
Sanna

Title: Re: Through the years!
Post by chopmyheadoff on Nov 15^th, 2006, 6:56am

if it wasnt for verapamil and imitrex i would not be here now.
i fully stand by me decision to medicate.

god - there isnt even a question about it.

7 years chronic = very near suicide.
discovered verapamil = 4 months pain free and counting.

feel like iv been born again

Title: Re: Through the years!
Post by Jackie on Nov 15^th, 2006, 5:43pm

Isn't it strange how these CHs are so different. They are as different as the individual sufferer.

Blake has been on tons of different medications over the past 16 or 17 years.

He was on prednisone for over a year at two different times. I knew how bad it was but the doctor says, "I have no idea how else to keep the man going"....so we did what we had to do to get along. He was on verapamil and litium for over 15 years.....then we would add other little 'pills' hoping to find the magic combo. Finally, after over a year on Topomax we decided it was time to STOP! He was down to 146 lbs (Blake is 6'4").
None of the prevent drugs were working and were preventing NOTHING. So.....we decided to go off everything....except 02, hot tea and Excedrine Migraine (for shadows).

Detoxing was tough and there were times I didn't know if we would make it. Thank God we did. Blake is better now than he's been at anytime during the past 17 (over 15 chronic) years. He's doesn't feel like he's being eaten up by drugs.

I don't think we'll ever go on the drugs again (ever is a long time... :)) We'll just have to see. All I can atest to is what being drug free has been like for Blake.

My theory is......if the preventative drugs work then take them....if they prevent nothing why take them.

Oh....if he gets bad again, I'll push for alternative this time.

It's still a mystery to me how the meds work for some and not for others.... [smiley=huh.gif]

Wishing you all pain free days and nights....

Love to you all....

Jackie