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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Whats your number?
        
(Message started by: thebbz on Feb 24^th, 2007, 5:32pm)

Title: Whats your number?
Post by thebbz on Feb 24^th, 2007, 5:32pm

Whats your number,
of drugs you have been treated with because of CH.
Include herbal,natural and perscribed.
Dont care what they are but what the number is. I was surprised. :o
jb
Has this been done before? :-/

Title: Re: Whats your number?
Post by Bob P on Feb 24^th, 2007, 6:22pm

Title: Re: Whats your number?
Post by thebbz on Feb 24^th, 2007, 8:12pm

31 here.
jb

Title: Re: Whats your number?
Post by E-Double on Feb 24^th, 2007, 8:44pm

13
I forgot the suppliments====== 17

now who has been on more miss rrrrrrrrroar ;;D :-/ :-*

Title: Re: Whats your number?
Post by georgej on Feb 24^th, 2007, 9:11pm

11 (including prescribed narcotics and pain medications early on)

Title: Re: Whats your number?
Post by Melissa on Feb 24^th, 2007, 9:15pm

my head isn't thinking clearly right now, so all I could count is 9.

Title: Re: Whats your number?
Post by Guiseppi on Feb 24^th, 2007, 9:34pm

I'm one who is convinced CH has destroyed my memory, my closest guess would be 20...plus or minus!...........What guinea pigs we feel like sometimes!

Guiseppi

Title: Re: Whats your number?
Post by lionsound on Feb 24^th, 2007, 9:41pm

14

..could be more ..stopped counting when I got more than EE ;;D

Title: Re: Whats your number?
Post by Gator on Feb 24^th, 2007, 10:07pm

So far as I can remember I have tried...

35 prescription meds

7 vitamin/herbal supplements

8 OTC painkillers/sinus meds

Heat, Ice and Max Strength Anbesol on a Q-tip up the schnozz

Oh, yeah, add an Occipital Nerve Block, RedBull/Energy Drinks and coffee.

Title: Re: Whats your number?
Post by the_watcher on Feb 24^th, 2007, 10:31pm

Isn't it just crazy that in the year 2007 so many people have tried all the different chemical bombs to stop this beast and most will only work somewhat and only for awhile. What pit of hell did this monster crawl out of?

Title: Re: Whats your number?
Post by Pinkfloyd on Feb 25^th, 2007, 12:43am

on 02/24/07 at 17:32:31, thebbz wrote:

Whats your number,
of drugs you have been treated with because of CH.
Include herbal,natural and perscribed.

OK,,,there are a couple that are counted as two, that are just different delivery systems (ie Imitrex nasal/Imitrex injections) only because they do have different efficacies.

Not counting all the different dosages.

Not counting anything OTC (like all the NSAIDs) except Melatonin.

Only counting things that were injested or injected, which leaves out chiropractic, acupuncture, (needles but no juice), biofeedback, etc., and were prescribed/used for clusters only.

Prescribed medications: 66
Herbal/Natural : 9

Total: 75

Bobw
List upon demand ;-)

Title: Re: Whats your number?
Post by sandie99 on Feb 25^th, 2007, 3:59am

I'm still waking up, but my number is about 15.

Title: Re: Whats your number?
Post by froggy on Feb 25^th, 2007, 10:33am

Hold on, he's still counting :-/

Title: Re: Whats your number?
Post by kcopelin on Feb 25^th, 2007, 11:16am

Do you mean all the way back to the beggining? Oh my gosh! 25 years. Should have bought stock in a pharmaceutical company. Okay-and this is an approximation-
28 prescription meds
15 OTC or herbals
8 non-traditional treatments: includes biofeedback, chiropractic, deep tissue massage, rolfing, iridology,

51!

Title: Re: Whats your number?
Post by BobG on Feb 25^th, 2007, 12:31pm

not counting nicotine and caffeine, one.

Title: Re: Whats your number?
Post by Redd on Feb 25^th, 2007, 12:39pm

Adding everthing up as best I can...

Prior to Dx:

All forms meds, treatments, therapy = 32 including the braces for what was thought to be TMJ causing these damn things, all scripts and OTC.

Post DX = 19 including supliments and my best weapon the Indolrings ;;D

Redbull would bring that up to 20 if that gets counted.

Title: Re: Whats your number?
Post by MJ on Feb 25^th, 2007, 2:41pm

Holy smokes bbz! Thats like trying to remember the names of all the students back in my 9th grade english class.

If I guess, including misc. therapies I would say probably around 40 to 50 different meds and supplements (legal and otherwise) and another 10 or more therapies from chiro to tenz to acupuncture and more.

It allways amazes me when some obscure treatment pops up and I can say oh yeah I remember that one too.

incidentally only one treatment really helped.

Title: Re: Whats your number?
Post by Brewcrew on Feb 25^th, 2007, 4:49pm

12.

Title: Re: Whats your number?
Post by Barry_T_Coles on Feb 25^th, 2007, 6:10pm

None;o2,magnesium,Taurine, caffeine,Red Bull, cold packs & a wing & a prayer.
Cheers
Barry

Title: Re: Whats your number?
Post by thebbz on Feb 26^th, 2007, 2:49pm

Thanks for the responses. Right on Barry. Your a tough ole cuss aintcha? Good job.
I reviewed my list and added 2 more 33 is the total.
Not counting cocktails and different methods of ingestion.
I suspected the trend would be more than 20.
Not a simple HA to treat at all. And I would speculate the failure rate is also relative to the total.
jb

Title: Re: Whats your number?
Post by vig on Feb 27^th, 2007, 7:11am

Prescribed and Taken
Amitryptaline
Imitrex

Prescribed but never Taken
Prednisone
Inderol
Lithium
Depakote

Taking now
Tryptamines

;)

Title: Re: Whats your number?
Post by Charlotte on Feb 27^th, 2007, 9:59am

I only have 10 fingers so I keep losing track after 20.

Charlotte

Title: Re: Whats your number?
Post by swimchica623 on Feb 27^th, 2007, 2:26pm

I think.....8 but I'm not positive, not including o2 or red bulls. Right now though just 2 (well maybe 3 I'm on prednisone for other reason and we are trying to figure out how much its stopping the CH and its getting complicated) and o2, tripts, and red bulls on hand.
Lisa

Title: Re: Whats your number?
Post by Skyhawk5 on Feb 27^th, 2007, 7:36pm

37 total, 30 of those the 1st yr, 1989-90. Currently taking 5. Lithium, Verapamil, Trazadone, Stadol NS, & Melatonin. Also O2. Cycle is now getting bad so this will change. Skyhawk

Title: Re: Whats your number?
Post by UN solved on Feb 27^th, 2007, 9:32pm

I thought everyone was 'low-ballin' until I saw Bob's. My number is more like his. Maybe not quite as many ... but enough !! I did have a list ... it burnt with my last computer.

UNsolved

Title: Re: Whats your number?
Post by pattik on Feb 28^th, 2007, 8:50am

Title: Re: Whats your number?
Post by tanner on Feb 28^th, 2007, 11:42am

Stopped counting at 40 something because I can't find my old paperwork from my stay in the Mich. Headache Clinic, so I am sure that the number goes to 60 or so.

Throw in acupuncture with and without electricity, chiropractic with and without traction, unnecessary and in retrospect damaging sinus surgery to " cut an additional window between 2 cavities ", taking pressure off that old nerve, and 1 nerve block. Add OTC's and herbals ( some snake oil ) and that # goes over 100.

The thing that scares me more then the numbers are the dosages that are often used ie: 200mgs. of Elavil Tdaily at the same time as 1000 mgs of tegretol Tdaily while also on steroids :o

And I wonder why I am in a constant shadow/haze even when not getting hit ::). Makes me feel pretty stupid now that I look back :-[

Gee Tim....were you ever a druggie?.......well yeah I have been an addict for the last 22 yrs. ;) Yikes

Title: Re: Whats your number?
Post by Gator on Feb 28^th, 2007, 7:00pm

Yeah, the dosages can get up there. When my neuro had me on Baclofen, I went to my primary care doc for something else. He asked me what meds I was taking and I said 80mg of Baclofen. He was like, "How in the hell are you walking?" (I guess the "recommended dose" for ch is like 30mg) I told him, "Walking my ass. I drove here!" He just shook his head in amazement.

Title: Re: Whats your number?
Post by BobG on Mar 1^st, 2007, 7:07pm

on 02/28/07 at 19:00:51, Gator wrote:

"Walking my ass. I drove here!"

LMAO.
Things to not say to a traffic cop............
"I had to drive. I'm too friggin stoned to walk."

Title: Re: Whats your number?
Post by thebbz on Mar 1^st, 2007, 9:26pm

;) Yes Mr.G, that and "could you give me this injection." [smiley=laugh.gif]
Now then back to work, I think any quick look here would be fairly conclusive. There is some guinea pigging going on here. I cant say that I have a better way to suggest. It does make it clear the help here does and will help others from having to take so much dope needlessly. At least thats my intention here. I cant believe I want research for more drugs. ::)
I must be loco.
all the best
jb

Title: Re: Whats your number?
Post by tommyD on Mar 2^nd, 2007, 3:48pm

Feels kinda funny saying this, but my number is 3. Not counting water and ginger for shadows.

Why so few?

Only had this disease for just shy of six years
Was rediagnosed with clusters quickly - only a few months after the hits started
Found this site the same day and read all about the various meds available, and all the side effects, all the troubles with docs and insurance companies, all the expense...
And I chose the medication that best suited my situation and have stuck with it since.

My life list of cluster meds:
Imitrex pills (doc thot i had migraine); of marginal use
Psilocybin; works very well
LSA; works very well.
Water - quart of cold water chugged as abortive; sometimes works
Water - adequate hydration as preventive; seems helpful
Ginger - strong ginger tea or Reed’s Ginger Brew to treat shadows of K3 or less; pleasent, moderately effective.

Non-med treatment: Hypothalamic Bump - my name for doing something to distract the hypothamus from making my brain hurt - usually involves application of cold; sometimes works

and I have a script for O2, but so far haven’t felt the need to get up a rig.

-tommyD

Title: Re: Whats your number?
Post by thebbz on Mar 2^nd, 2007, 4:00pm

I rest my case.

Quote:

Why so few?

Only had this disease for just shy of six years
Was rediagnosed with clusters quickly - only a few months after the hits started
Found this site the same day and read all about the various meds available, and all the side effects, all the troubles with docs and insurance companies, all the expense...
And I chose the medication that best suited my situation and have stuck with it since.

Title: Re: Whats your number?
Post by gore2424 on Mar 2^nd, 2007, 10:45pm

Title: Re: Whats your number?
Post by Karla on Mar 2^nd, 2007, 11:02pm

Title: Re: Whats your number?
Post by Beastfodder on Mar 15^th, 2007, 7:01am

Prescribed by the doctor it's just 7 including O2 which was the only one I've had any time for.

Two different flavours of clusterbusters have been fine and dandy tho'.

Title: Re: Whats your number?
Post by LeLimey on Mar 15^th, 2007, 7:48am

That shocked me - 30 and thats not counting stuff like imigran pills and nasal sprays as well as the injections either.

Of all of those I'm now only using three on a regular basis. O2, ice and red bull (well el cheapo equivalent that is!) This is in part because with all the other illness I've had this year I'm on a delightful 86 pills a day already and I don't need either any ore reactions to drugs or interactions between them :-/

Title: Re: Whats your number?
Post by chucknot on Mar 15^th, 2007, 8:26pm

on 02/25/07 at 12:31:17, BobG wrote:

not counting nicotine and caffeine, one.

Ok, what was the one...cause either that one is good or you have given up?

Title: Re: Whats your number?
Post by chucknot on Mar 15^th, 2007, 8:47pm

on 03/01/07 at 19:07:22, BobG wrote:

LMAO.
Things to not say to a traffic cop............
"I had to drive. I'm too friggin stoned to walk."

This is an eye opener...now I remember being given Baclophen. Ugly thing...or are they all.

Title: Re: Whats your number?
Post by chucknot on Mar 15^th, 2007, 10:13pm

on 03/01/07 at 21:26:54, thebbz wrote:

This is the thing -so many notions of what may or may not work in a given instance and yet you all persist because what else is there?. As someone pointed out here folks are tending to do the doctors work for them. There is something in that and there is something in the notion that the collective exsperience of this site is likely the best source of solutions given the ability to step back a little.

But someone herein mentioned efficacy which touches on my own favorite "superstition". Last go round I reckoned that if things worked sometimes and sometimes not then it was likely a big NOT. Surely if I stubbed my toe coincident to the disappearence of a CH well, then the next time a CH was coming I would be kicking the hell out of my available toes. The only for sure I have is Indocin in the last week of clusters so, the clusters were really reduced. Now I know of no doctor that will give me Indocin...bad juju they say. I practiced biannual doses of allergy shots and antihistamines (zyrtec) and thought they were working. Seems not.

Then in my two long breaks of 3 and 6 years respectively I had an associated sinus surgury (u guessed it...Doctors theory BCH diagnosis) and a severe concussion respectively. Wondered if those had shocked the body out of CH's or caused rewiring (concussion especially). If so, well, we really can't go to the bigger hammer school for answers.

Anyway, this is not ment to be a hijack...sorry if it is, but that is what the topic brings out in me.

Title: Re: Whats your number?
Post by thebbz on Mar 15^th, 2007, 10:32pm

It's another indication of collective experience kicking the crap out of med school graduates PRACTICING medicine. [smiley=laugh.gif]
This also demonstrates the fact that the majority of us have to endure the plethora of drugs some doctors gives us without that experience, about 30 from what I'm seeing. ;) With mixed results at that. And what are the odds most GPs would listen to a patient and say hey you know more than I do? I found one and that is worth it's weight in gold. I have had more PF time that ever since I found this site and that doc. With less drugs I might add.
all the best
Thanks to all that helped me again. You know who you are. None were doctors.
jb
back to rowin.

Title: Re: Whats your number?
Post by Lizzie2 on Mar 15^th, 2007, 10:48pm

70

*sigh*

I ran through a list of meds tried on my computer, but I didn't feel like separating them into the categories of prescribed, herbal, etc. I'm not even sure the list I was going off of includes everything. And I also haven't updated it for a year.

Still trying to find something that truly works, too!

Sad, ain't it?

Title: Re: Whats your number?
Post by Rosybabe on Mar 15^th, 2007, 10:49pm

over 20 years with this...10 of those as under age girl...who knows???

can I count the cocktail given to me by witches and "curanderas" who said that a spirit of a dead man was putting to much weight on my head???

[smiley=laugh.gif]

Title: Re: Whats your number?
Post by thebbz on Mar 15^th, 2007, 10:52pm

Certianly, I did. :D
jb

Title: Re: Whats your number?
Post by ClusterChuck on Mar 16^th, 2007, 12:14am

DAYUM!!! All y'all are a hell of a lot better than I am. I have taken more than one, and less than a thousand different drugs. But I am too old and senile to remember them all ... Hell, I have to pull out my wallet, and look at my driver's license just to remember my name ...

Now .... Ummmm .. what was this thread about?? ?? ??

Fred ... no wait ... Devin ... No that's not right either ... is it George ?? ?? ... No, that doesn't sound right either ... Oh well, just sign me off as ME

Title: Re: Whats your number?
Post by LeLimey on Mar 16^th, 2007, 5:16am

on 03/15/07 at 22:13:33, chucknot wrote:

As someone pointed out here folks are tending to do the doctors work for them.

No we're not - we're doing it for US!!!
WE know what this pain is like
WE know what we go through and
WE know how desperate we get.

Its been said for a long time and I truly believe it - the cure for CH when there is one will be sufferer led rather than doctor led.

Helen

Title: Re: Whats your number?
Post by tpitts77 on Mar 16^th, 2007, 10:16am

At least 21 but I know I'm forgeting some. [smiley=huh.gif]

Title: Re: Whats your number?
Post by MikeE on Mar 16^th, 2007, 3:20pm

I remember 24 quickly but one was lithium so Im sure Im sure I cant remember at least that many more.

Title: Re: Whats your number?
Post by paul3929 on Mar 17^th, 2007, 11:48pm

have tryed about 4,sansert seemed to work the best,but found that it can be dangerus. hope to try o2 if i can find a doc to ok it. started a new string of attacts a week and a half ago :-[ .hope we are all cured soon :)

Title: Re: Whats your number?
Post by Kirk on Mar 18^th, 2007, 2:26pm

58 was all that I could come with. When you consider all the changes in pharmacology from May 69 to present. Its surprising that number isn't higher.

[smiley=smokin.gif]

Title: Re: Whats your number?
Post by BobG on Mar 20^th, 2007, 1:01pm

on 03/15/07 at 20:26:16, chucknot wrote:

Ok, what was the one...cause either that one is good or you have given up?

The one was Sansert. Did it work? Sort of. It kept what might have been a Kip 9 down to 6 or 7. My CH started at age 26, I’m 60 now. Back at the beginning there was almost no information available about treatments for CH. I lived in a small town with one doctor who had never seen CH or even heard about it. After going to the eye doc, ear-nose-throat doc and dentist I finally got to a neurologist that prescribed Sansert. He said that was all there was for CH treatment. I was young and naive and tended to believe doctors actually knew what they talked about. Stupid on my part. Over the years I used ice packs, a lot of pacing back and forth, rolling on the floor, screaming and a bunch of dirty words. But, I got through them all.
Now the good news. I haven’t had a cycle in the last 8 years except for a yearly 2 month long cycle of minor shadows. No big deal.
I only took Sansert during 2 of my 8 to 12 week cycles. As most here have noted they have tried many, dozens of meds over the years. Many have reported they think certain meds prolong their cycle(s) or make them come back more often.
Question? I only used one med. My CH has stopped (mostly). I did not “load my body”, for lack of a better words, on meds. Many CH’ers have tried so many meds for so long, have they become immune to them? Are they making the CH’s longer and more often because they have used so many meds. I can sure understand that we will try anything and everything to stop the pain.
This is only to explain why I answered the question, one. It is the way I suffered through. Please, nobody try it my way and stop searching for you relief.