Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2003 Posts >> How Long do they Last?
        
(Message started by: stuey on May 15^th, 2003, 10:41am)

Title: How Long do they Last?
Post by stuey on May 15^th, 2003, 10:41am

I am new here and close friends call me Stu. While I am glad I have found a place to discuss what is happening to me I would NEVER wish this on anyone, couldn't. I have read through many posts and find we all suffer. Right now I am going to my neuro next Tuesday to find out what else is available for treatment. So many here say Verapamil and Prednisone tapers. I have been on verapamil for three years and this time around the Prednisone hasn't worked. So I'm at a loss as to what to do. Can't take 2 cafergot cause a palpatations and 1 doesn't work, imitrex injects work but can't get enough with insurance so I'm really wondering what to do. Three years ago the prednisone broke up the cycle in the middle so I have no clue how long these cycles really last. Everyone says they go away but I'm beginning to wonder if that's so. I hope as time goes on I can be a rock for someone but I am no CH expert and hope a few can give me some insight as to what to expect and how long. I take something called trileptal which is in the same class as tegratol cause I have something called nocturnal epilepsy where I was seizing in my sleep. One problem solved and now this again. Anyway, that's my drama. Don't wanna give up, wanna keep on but damn it really is difficult having to function as if everything is okay when it really isn't. I know everyone can attest to this. I hope after this cycle is over I can offer some hope to others and advise on how to handle this. This message is too long as is so enough. Thank for taking the time to read. Ree thank you for your words a few days ago. Peace to all. Stu

Title: Re: How Long do they Last?
Post by Mark C on May 15^th, 2003, 10:53am

Welcome STU,
Sorry about the head, I know how you feel. I do see a couple of things missing from your tried list including O_2. I will attach a favorite link about meds in the hope you can try some new things.
Good Luck,
PFDAN's
Mark
http://www.clusterheadaches.org/medications.htm

Title: Re: How Long do they Last?
Post by JDH on May 15^th, 2003, 10:57am

Hi Stu and welcome,
I'm episodic and my cycles usually start in the fall and have lasted anywhere from 1 month to 6 months. It's always been a little different each time.
You didn't say if you have tried oxygen yet. If you haven't, you should definitely ask the doc about it.
Me along with a lot of other people here have had success using it. Check out all of the info here on o2, print it and take it to your Dr.

good luck and pfdan's to you,

Jim

Title: Re: How Long do they Last?
Post by maggie_may on May 15^th, 2003, 10:59am

Welcome aboard Stu. This is definitely the place to be when you know this kind of pain. I haven't been on the prednisone yet, but I hear that it works for some and not for others. About the imitrex, have you tried the imitrex tip that's on the left side of the screen? You can extend one shot into two or three this way. It really does work as well as a full-strength dose - at least in my experience it does. And definitely try and see about the O2. There are people here that only use that and swear by it. I've got it, but haven't had to use it yet.

pfdans
maggie

Title: Re: How Long do they Last?
Post by cathy on May 15^th, 2003, 11:01am

Hi Stuey.... A warm welcome to you, sorry to hear that your in cycle and hope it ends for you soon, if you have't given the O2 a go then try it, a huge amount of people seem to benefit from it. Sorry to hear about the epilepsy, my daughter suffers with nocturnal epilepsy too. Good luck.

Wishing you pfdan's

Cathy

Title: Re: How Long do they Last?
Post by stuey on May 15^th, 2003, 11:03am

Mark thanks. I will ask the doctor about the oxygen. I had a prescrip for this 3 years ago but it was never filled. I hope it isn't hard to get. Frankly, I never remotely imagined the CH were going to recur, i really believed that that was it. Boy was in shock when they started happening again this April. I think I'll be learning more this time have no choice. I never troubled myself before, thinking they were in the past. Thanks again. I will mention the oxgyen Tuesday when I see the neuro guy. He treats me for seizures, hope he understands CH. Peace. Stu

Title: Re: How Long do they Last?
Post by stuey on May 15^th, 2003, 11:10am

Maggie and Cathy you are both wonderful. I will read the Imtex tip and hope it will work cause I only got a few shots left. I like the regular needles better than the Statdose system cause I always feel like I'm doing something wrong. I used to cringe to see people giving themselves needles and especially watching the heroin addicts at work. Now, I would stick myself 50 times if I had to. Cathy, I don't know what your daughter is taking and hope what she is taking for the nocturnal seizures works (they're horrible too, had them for years) but the trileptal is really helping me. Haven't seized in a month. It is tegratal with an added molecule without the side effects. I may ask the neuro to try me on neurontin cause that is for seizures as well, and I think I saw somewhere on this site that people use neurontin for CH somehow? Thanks again Both of you. Later. Stu

Title: Re: How Long do they Last?
Post by Jackie on May 15^th, 2003, 11:11am

Hi Stu,
Sorry you have the need to be here but glad you found us.....welcome.
My husband uses imitrex and zomig...the zomig doesn't work as fast but lasts much longer...you might give that a try. Also...there is tip (button on the left) on making the imitrex go farther. Oxygen shouldn't be a problem to get...please give that a try.

Good luck...
Jacks 8)

Title: Re: How Long do they Last?
Post by stevek on May 15^th, 2003, 11:12am

Stu – Welcome and I hope you find some relief.

As for the length of the cycles. Mine were always 3 to 6 weeks starting in February. That was before I took medications for the CHs (remembering those days scares the heck out of me). Once I started using imitrex I have had cycles up to 6 months long. Definitely not a scientific study but I believe the meds mess with cycle timing. Even with longer cycles I can’t imagine going back to the time before Imitrex, O2 and verp.

Take care, Stevek

Title: Re: How Long do they Last?
Post by magpie on May 15^th, 2003, 11:16am

Stu,
I know what you mean when you thought they were gone. I have had CH for 20 years off and on but when you dont have a clue what it is, every time it goes away you think its gone for good. My rule is never drink beer in April!!! (I also suffer in April.) and then I take whatever the doctor will give me. Im a rookie at treatment so I have yet to try alot. Caffergot seemed to help me quite a bit the last time too.
Take Care & Good Luck to ya
Magpie

Title: Re: How Long do they Last?
Post by CJohnson on May 15^th, 2003, 11:21am

How do, Stu.

on 05/15/03 at 10:41:40, stuey wrote:

While I am glad I have found a place to discuss what is happening to me I would NEVER wish this on anyone, couldn't.

Wait until some pharmacist gives you the condescending "Back for more drugs, dopehead?" look.

on 05/15/03 at 10:41:40, stuey wrote:

Three years ago the prednisone broke up the cycle in the middle so I have no clue how long these cycles really last.

Mine last 1-2 months

on 05/15/03 at 10:41:40, stuey wrote:

Don't wanna give up, wanna keep on but damn it really is difficult having to function as if everything is okay when it really isn't

Giving up is no more an option than functioning as if everything is normal. Everything is not normal. You must accept this fact, and function in a manner that is consistent with giving yourself every opportunity to manage your episodes the best way you can. You won't give up, either. Instead, you and yours will figure out how to deal, and this place is surely the best base of operations for that mission.
Good luck,
-Curtis

Title: Re: How Long do they Last?
Post by 9erfan on May 15^th, 2003, 11:23am

Hi Stu,

Welcome to the board. Sorry you're getting attacked by the beast.

It's hard to say how long your will last, it varies for everyone. Back when I was episodic, my shortest cycle was 2 weeks and my longest was about 5 weeks. And I went a whole year between my first & second cycle...boy do I wish for those days again.

Absolutely, go get that oxygen...you shouldn't have a problem. Hope things get better soon...but don't be afraid to vent to us when you need to!

Let us know how the oxygen works for you!
Virginia

Title: Re: How Long do they Last?
Post by Roxy on May 15^th, 2003, 11:26am

Hi Stu, and welcome. I hope the info on this board will help you and the neuro come up with something that will work well for you. Everyone has already given you good advice, nothing I can really add to it. I use 02, imitrex and sometimes cafergot (for shadows). Like you, I prefer the vials and needles, rather than the stat dose. It's much easier to break the shot into thirds that way. I actually stuck one in my thigh the other day while driving down the expressway....it's much easier.

Hoping your cycle is a short one.....PFDAN,
Tracey

Title: Re: How Long do they Last?
Post by Drk^Angel on May 15^th, 2003, 12:08pm

Welcome to the board! Sorry that the beast is pokin' your cranium with a million tiny needles, and one big, red hot, rusty poker. Welcome to the family! Good luck!

PFDAN............................... Drk^Angel

Title: Re: How Long do they Last?
Post by stuey on May 15^th, 2003, 12:11pm

I just wish to thank all of you for your responses. I have alot of information to sort through and will be taking along stuff to throw at the doctor. He helped me with my seizures so now it's time for him to help me with CH. He gave me a couple imitrex samples he had and the pills just don't kick it. I was on the bed the other day devastated holding the head like that picasso? picture and doing my "no, no" stuff and my dog was hurt too and the 100 mg pill took 32 minutes to ease the pain and that's far too long. Plus I never know really when exactly to take the pill. It's almost like I can feel it's going to happen but somewhere I'm also thinking well maybe it's someother headache coming and not the CH. I will ask about O2, Zomig, Amerge, Verapamil Instant Release and everything. I will talk to you later. Thanks again for all the help. I feel armed at least with some information and not like I'm walking in blindly. I really wish you all pain free days and nights, I really do cause this shit sucks. Peace to you. Stu

Title: Re: How Long do they Last?
Post by Jackie on May 15^th, 2003, 12:17pm

Good Luck, Stu.....sounds like you're armed and ready for the doctor. Keep in touch and let us know how you're doing....and how the appointment goes.

Jacks 8)

Title: Re: How Long do they Last?
Post by echo on May 15^th, 2003, 12:22pm

Welcome to the MB Stu, can't really add anything of value that hasn't already been said by those who already responded.

Sorry that you needed to search us out, glad you found us.