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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Do You Stop the Meds When The Pains Stop?
        
(Message started by: Sweet_Landings on Apr 20^th, 2002, 11:32pm)

Title: Do You Stop the Meds When The Pains Stop?
Post by Sweet_Landings on Apr 20^th, 2002, 11:32pm

I am new so forgive my ignorance...Do y'all stop taking the meds when the CH's stop? Mine haven't stopped so this concept really hasn't occurred to me until I saw a few postings referencing this issue.

How do you know when it is the end of a cycle? I had two pain free days, Dec. 18 & 19, 2001. But then on the 20th it was raging again.

I am thinking I am in a little different boat because of the Trigeminal Neuralgia. My CH's started about 5 weeks after the TN started (Sept. 2001).

Has anyone taken Tegretol? The Drs said that it was a calcium blocker like Valerapim. I am taking both and have been since Sept. 2001. What dosage of the Valerapim is normal? I am up taking 180mg daily of the Valerapim. Shouldn't it have stopped some of this pain after all these months? I know that I can take up to 1800mg of the Tegretol, but am at 600mg daily right now. Dr will probably increase that in the next week or so since the pain hasn't stopped.

I also take 50-100mg of Trazadone nightly to help me sleep. Depends on the amount of pain I am in. I have more nights when I sleep thru the pain but my husband finds me sleeping on my stomach, holding my head, so I think the Trazadone at the higher dose just knocks me out. ( Which is fine with me)

One other question...and this is rather embarrassing...Do any of you snore, I mean REALLY snore? Some nights you can hear me in the living room, with the TV on and the Bedroom door shut. (I am blushing now LOL) I never did this before. It is a real big joke around here with the kids. Is there something I can do to stop it, I worry about the amount of sleep my hubby is losing?

Title: Re: Do You Stop the Meds When The Pains Stop?
Post by nancyc on Apr 21^st, 2002, 9:22am

All I can tell you is I wish I had never stopped taking verapamil at one time...the next time i took it, it did not work alone..having to add more meds now...if i was episodic again, and a med worked for me, i would NOT stop taking it...dont care what anyone said lol...as for the snoring...i dont know...i live alone and my puppy Toby wont tell me if i snore.lol....i do know that i have trouble breathing at nite when i lie down...my new neuro is putting me in the hospital may 10th as she says my airway is much too narrow...she does not know how i am breathing...they will do a sleep study and possible surgery to enlarge my airway...sounds like you may need a sleep study done.

Title: Re: Do You Stop the Meds When The Pains Stop?
Post by kim on Apr 21^st, 2002, 9:30am

Hi Sweet Landing, i'm not at all familiar with TN. But for cluster headaches, a lot of the medications need to be tapered off. It can be dangerous to just stop taking them, so you need to have communication with your doctor. As far as knowing when your cycle is over, well i can only speak for me, but i just feel better and better. The attacks just kind of peter out. I am celebrating 1 straight week with no ch and no shadow. I am pretty confident that my cycle has ended, however still taking my meds and staying in touch with the doctor. If this week goes well, then I will talk to my doctor about tapering off the medication.
As for the snooring, yep. I snoore too. LOUD. When the cycle is over and i'm feelin better, the snooring situation improves significantly. ;) My family tape recorded me one time cuz I told them "I WAS NOT SNOORING!" LOL
Good luck to you. Also, there is lots of info about medications if you explore the buttons to the left of the screen. Smiles, Kim

Title: Re: Do You Stop the Meds When The Pains Stop?
Post by nancyc on Apr 21^st, 2002, 9:34am

Kim. that is great news..End of cycle..glad things are better for you, sis...hang in there and keep us posted... ;D

Title: Re: Do You Stop the Meds When The Pains Stop?
Post by Ueli on Apr 21^st, 2002, 9:53am

Hi Sweet,

I'm sorry to hear that you suffer from both, CH and TN. However, I think there is no close connection between the two, other than both involve the trigeminal nerve.

About your meds:
Carbamazepine (Tegretol) is an anticonvulsant and specific analgesic for trigeminal neuralgia. It does nothing at all against CH (as many clusterheads can tell that were prescribed it, due to misdiagnosis or ignorance).

Verapamil is a calcium channel blocker, an entirely different class than Tegretol. Verapamil is the preventative of first choice for CH, but your dose of 180 mg is very low for CH. You should talk to your doc to up it. If taken at a high enough dose, it does dampen the attacks very much and may even suppress them completely. I'm taking 560 mg Verapamil per day and I didn't have an attack above Kip #3 since I'm on that dose.

Trazodone HCl (Desyrel) is an antidepressant and has been used by some against CH. Maybe somebody else can tell you about its usefulness.

Have you considered oxygen to abort a CH attack? Many have great success with it, and the side effects are practically non existent.

Finally, a humble request about your (and many other's) spelling of med names. Please double-check it with the printing on the package, otherwise it is difficult to impossible for others what you are taking about. The fuzzy name search of http://www.rxlist.com/ is very tolerant to misspellings, but for "Valerapim" it found only something similar sounding used for bladder cancer and Google returned 0 hits ::)

PFNAD's
Ueli

Title: Re: Do You Stop the Meds When The Pains Stop?
Post by oringkid on Apr 21^st, 2002, 10:32am

Trazodone is an old anti-depressant that due to its side effect of extreme drowsiness is now mostly prescribed as a sleep aid.

Title: Re: Do You Stop the Meds When The Pains Stop?
Post by Sweet_Landings on Apr 21^st, 2002, 12:10pm

So basically the only thing that I am taking to help with the CH's is the Verapamil ( BTW sorry about the spelling before, I was tired and hurting) and using the Migranol when I can tell that it is a CH and not TN. And apparently I am not taking enough of that to do much good.

I am scheduled to see a nuerologist in June and certainly hope that he will do something more to help me.

Thank you for the input. There is so much that I have yet to learn about these disorders. I have had a hard time up until now finding anything other than vague information about CH.

Title: Re: Do You Stop the Meds When The Pains Stop?
Post by Greg_A on Apr 21^st, 2002, 3:44pm

Sweet Landings-- thats a long time to wait to see the neurologist. Especially if your in that much pain.

Wonder if you can get to your normal doc and see if he can hook you up with a little O2 to get you some relief while your waiting for Jun to come around?

I started O2 last monday and have had nothing but good pain free days... (after being severly chronic for 7 yrs) I feel like i'm reborn..

btw... i guess the common dose of O2 is 6-8 liters per minute. If your doc hooks you up, make sure your regulator has that flow rate.

Good luck...

Title: Re: Do You Stop the Meds When The Pains Stop?
Post by Linda T on Apr 21^st, 2002, 3:54pm

Hi Sweet: About stopping the meds:

I usually wait about 30 days pf before I start the med taper. I guess I'm just superstitious. I know this will sound stupid but somehow I always knew the difference between the meds actually working and the end of a cycle. When the cycle ends I just have this really good feeling kinda like you forgot how good it felt to be completely pf. There is really no way I can describe it but I bet there are alot of people who know what I mean anyway.

Good luck and PFDAN always, Linda T

Title: Re: Do You Stop the Meds When The Pains Stop?
Post by Ted on Apr 21^st, 2002, 4:00pm

on 04/21/02 at 15:44:31, Greg_A wrote:

btw... i guess the common dose of O2 is 6-8 liters per minute.

8-10 l p/m

Title: Re: Do You Stop the Meds When The Pains Stop?
Post by Sweet_Landings on Apr 21^st, 2002, 5:33pm

I will call my regular doctor and ask him about the O2. I am supposed to see him on Tuesday. Thanks for the advice, I hope it helps.

I would really like my life back.

Title: Re: Do You Stop the Meds When The Pains Stop?
Post by Greg_A on Apr 21^st, 2002, 5:56pm

Sweet-- let us know what happens.

Ted-- ooops, i knew that. I've been reading too much info on the smaller tanks. I want to find something that i can keep with me.

;D