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        Cluster Headache Help and Support >> Cluster Headache Specific >> Sick of me yet?
        
(Message started by: kyitb on Jul 17^th, 2007, 5:05pm)

Title: Sick of me yet?
Post by kyitb on Jul 17^th, 2007, 5:05pm

I feel like maybe I ask too many questions ... This is year 3 of chronic clusters had one year that was episodic. I just found this place and I guess I got alot of questions. Eventually i'll catch up, please bare with me till then.

It seems that the majority of the information on here and throughout the net is geared more towards the cycles of the ch and not the chronic. (I could be terribly wrong, i've been picking topics at random)

Are they similar? It seems to me that they wouldn't be. I'm not saying strength of pain. More so the causes and treatments. I want to make it clear that I am not downplaying the struggle of episodic ch. In fact, I think that would be worse in alot of ways. The terror of reliving it again after months or even years of a break must be tough to deal with.

Anyways i'm babbling.

Mushrooms. I've been reading up on this treatment option. It seems that they take it once and get some relief. What is a chronic to do? Go on weekly trips? (i'm not above this treatment, I don't do much anyways on the weekends)

It seems, through reading some topics, that eventually most treatments lose affectiveness from cycle to cycle. Is the turn around increased w/ someone that's chronic. On my own i've found that the minimal relief I used to get from hot hot showers has all but disappeared. Can I expect the same from other simple treatments as well as meds?

Verapamil, Lithium, Imitrex, Amerge & Zomig are the meds that I have tried. With no results! Are these geared more towards those with episodic?

Chronic sufferers, what's the longest period of time you've gone w/o pain?

I see an age gap (it's cool I dig older women). Have those older than me (i'm 29) suffered for so long and meds are just now coming out? How have you gone for so long w/ such pain. The thought of 20-30 years of this scares me.

As you may be able to tell by my feeble attempts of humor thrown in. I'm doing alot better. There's something to be said for power in #'s. I am grateful to you all for the feedback and caring ... Keep it coming ...

Title: Re: Sick of me yet?
Post by Patrick_A on Jul 17^th, 2007, 5:19pm

As far back as I can remember. I got my 1st CH at the age of 16. For years, I thought i was getting sinus headaches because my nose would get so stuffed up at every hit.
I am 1 of the rarities in that my Dad also had CH's, but for some reason I didn't put 2 and 2 together till I was in my 20's. My family Dr finally diagnosed me with CH's in my late 20's. Everything he tried didnt work and I finally decided to hell with it, I'd just live with it. In 1997 ( I think the date is correct) I discovered this site. I was a basketcase and was about ready to end it all. It was suggested to me to go to a Neuro and I did. He put me on a cocktale of drugs that didnt help but he also gave me *Imitrex*. Oh yes, I fell in love. The one thing that could kill the beast! Finally some years later I got smart and started reading the treatments that people had tried and I went to my neuro and asked him to prescribe Prednisone and Verapamil and that lead to my remission which is now ongoing for 4 years.
I am episodic. I used to get 2 cycles a year.
I always thought being chronic was worse because at least I'd get a break from the beast. JMHO!

PA

Title: Re: Sick of me yet?
Post by thebbz on Jul 17^th, 2007, 5:22pm

Check your PMs.
all the best
jb

Title: Re: Sick of me yet?
Post by sandie99 on Jul 18^th, 2007, 3:40am

If you are wondering something, ASK! Of course, That's what you should do. :)

The more you read and learn about ch, the better. Knowledge does give power, because the more you know about the devil, the more weapons you have when it changes its tactics. I'm 27, I got my first hist at 21.

Now, I've been chronic myself and it's no walk in the park. During those days I did get week "off" because I had a flu, but that was it until the cycle broke (for 11 months and now I'm episodic).

Verapamil, topomax, relert, vermin, zomig... been there, tried it. And few others whích I have already forgotten. All during my chronic days. When I become episodic, I decided not to go back to a neuro and treat my head on my own and since then I've taken red bull/its generic equivalents when I get hit (as soon as I feel it coming, I run to get it), some caffeine tablets and taurine treatment (50 day trial, 1 tablet/day, 500g each), which kept the beast at bay for a while.

What I have learned during my cluster years is that don't let the pain control your life, but be prepared for the worse. One med may fail you and one treatment may not help always, but there's always something else to try. Great neurologist is a blessing, but they all do not know about ch - and if the doc doesn't listen to you, it's time to consider another one. And knowing that there are people who understand and support you is absolutely amazing! :)

PF days,
Sanna

Title: Re: Sick of me yet?
Post by BarbaraD on Jul 18^th, 2007, 5:44am

Being chronic, I can relate to you. Have been chronic since 97 and it looks like it's gonna stay that way. Don't know which is worse chronic or episodic -- guess both have their advantages and disadvantages.

Right now I'm on topamax (my miracle drug) and it's working to keep me in remission (as much as anything). I get breakthru hits, but nothing I can't handle. Keep Red Bull and O2 handy for those and cafergot in case things get really bad. And I've learned to live with the darn things.

As to how long I've gone without a CH -- can't remember... I have shadows almost daily (these I don't even count as headaches, so .....)

Personally, I try not to dwell on the headaches -- I live my life and if I get hit - I just get hit and deal with it. But the headaches don't rule my life. When I'm in a high cycle, I'm not a pleasant person to be around, but I don't even apologize for that anymore - can't help it - I hurt and everyone should be miserable as me! :-/

As to meds -- keep trying till you find what's right for you (and we're all different) and then get on with your life. You're not old enough to quit living and give in to the beast.

Hugs BD

Title: Re: Sick of me yet?
Post by Bob_Johnson on Jul 18^th, 2007, 9:04am

J Headache Pain. 2005 Oct;6(5):417-9. Epub 2005 Aug 1.

Warfarin as a therapeutic option in the control of chronic cluster headache: a report of three cases.

Kowacs PA, Piovesan EJ, de Campos RW, Lange MC, Zetola VF, Werneck LC.

Headache Section, Neurology Division, Internal Medicine Department, Hospital de Clinicas, Universidade Federal do Parana, Rua General Carneiro 181/1236, 80060-900 Curitiba, Brazil. cefaleia@hc.ufpr.br

Chronic cluster headache remains refractory to medical therapy in at least 30% of those who suffer from this condition. The lack of alternative medical therapies that are as effective as, or more effective than, lithium carbonate makes new therapies necessary for this highly disabling condition. Based on a previous report, we gave oral anticoagulants to three patients with chronic cluster headache. Two of them remained cluster headache-free while taking warfarin. In the third patient, the use of warfarin for three weeks initially increased the frequency and intensity of cluster headache attacks but subsequently induced a prolonged remission. In spite of the paucity of data available, oral anticoagulation appears to be a promising therapy for chronic cluster headache.

PMID: 16362716

Title: Re: Sick of me yet?
Post by nani on Jul 18^th, 2007, 9:18am

We all had lots of questions when we first found this place.

I was episodic, and without the correct diagnosis, from age 16 to 42. Then I had a 5 1/2 year chronic cycle, that was unresponsive to meds. Psilocybin and LSA seeds finally broke that cycle. When I first started busting, I'd have to dose every 10 days or so. Now, I can go a few months and find that if I dose when "activity" (shadows and twinges) ramps up into hits, I can control it quite well.

Keep plugging away... you're going to find something that helps. IMHO, though, standard meds are not the way to go. Read about kudzu, too. It helped me and worked well as a prevent for a while.

pf wishes, nani

Title: Re: Sick of me yet?
Post by BobG on Jul 19^th, 2007, 10:19pm

on 07/17/07 at 17:05:56, kyitb wrote:

I feel like maybe I ask too many questions ... There's no such thing as too many questions here. We were all new at one time.

Anyways i'm babbling. That's OK.

Mushrooms. Go on weekly trips? With the shrooms you don't go on any trips. The dose is so low that all you (might) get is a little buzz.

I see an age gap (it's cool I dig older women). Me too. I'm even married to one! But she's younger than me.

As you may be able to tell by my feeble attempts of humor thrown in. We like funny. I'm doing alot better. Great! ...