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        New Message Board Archives >> 2006 General Board Posts >> is my medicine obsolete
        
(Message started by: toadisland on Jan 22^nd, 2006, 9:20pm)

Title: is my medicine obsolete
Post by toadisland on Jan 22^nd, 2006, 9:20pm

i haven't been back for nearly two years. i guess i'm one of the lucky ones. i've been taking sanserts (methysergide maleate) for maybe 30 years - as i need it. the pharmacies seem now onot to know what it is, so i can't go back to my general practitioner for my regular prescription. does anyone know an experienced neurologist in SW Florida, in Naples or Ft Myers? does anyone know if there's a methysergide equivalent?

Title: Re: is my medicine obsolete
Post by Linda_Howell on Jan 22^nd, 2006, 9:24pm

If you'd have stuck around when you were Pain-Free...oh never mind..

http://www.ouch-us.org/medications/medications.htm

Linda

Title: Re: is my medicine obsolete
Post by maffumatt on Jan 22^nd, 2006, 10:57pm

I was told by my pharmacist you couldn't get it in the US any more. You can get it Canada, use a reputable pharmacy, perhaps one of our friends up north can help you in that regard.

Title: Re: is my medicine obsolete
Post by chewy on Jan 23^rd, 2006, 7:55am

Quote:

i guess i'm one of the lucky ones

Others weren't quite as lucky. They still needed support. They got it from those that stuck around to give some.

Title: Re: is my medicine obsolete
Post by AussieBrian on Jan 23^rd, 2006, 8:37am

on 01/23/06 at 07:55:07, chewy wrote:

Others weren't quite as lucky. They still needed support. They got it from those that stuck around to give some.

Which just goes to show how different we are and how we all use this wonderful place to our own special advantage, as an answer to our own special needs.

There are those who drop in only when they're hurting, looking for a shoulder to cry on or perhaps an update on new treatments (in this case a re-named med). Other people choose to avoid us during that 'certain time' as they've problems of their own they're trying to cope with.

Either way, I reckon it's beaut that a bloke can drop in when it suits him, take the best and forget the rest, and try to get on with his life.

And he asked just the simplest question.

Title: Re: is my medicine obsolete
Post by toadisland on Jan 23^rd, 2006, 8:44am

BOY O BOY. i'm getting a lot of jabs for "not sticking around". the situation is that i don't know much and i look for people that do know something. it seems we all still don't know much. i did the medicine survey in my earlier visit. the results still don't point us in any direction. methysergide helped me by reducing frequency and severity. i've tried breathing steam, sniffing camphor spirits, vibrating my temple and jaw vigorously with a motor thingie, taking hot showers. all these seemed to help a little. i tried oxygen once. it didn't work. i tried zomig once and it seemed to make things worse.

i don't know how i can support or help except by offering all this same information that i contributed earlier. i testify that one cannot expect to outgrow CH by age (near) 70.

my dad (now 96) doesn't have headaches any more, maybe not since he was 80. my grandfather still had them frequently when he died at about 75. what to do. we still don't know.

Title: Re: is my medicine obsolete
Post by Carl_D on Jan 23^rd, 2006, 8:52am

Have you tried Verapamil and Lithium as a prevent? It may be a good replacement for Sansert since it is no longer available. What about Imitrex injections?
You may want to talk to your neuro about options for abortives and prevents. I started Verapamil a few months ago and since the doc has been cranking it up over the months, it seems to be slowing down the CH's while not totally eliminating them. Being chronic though, I'll take whatever works.

Peace,
Carl D

Title: Re: is my medicine obsolete
Post by marlinsfan on Jan 23^rd, 2006, 10:30am

If you can't find a doc over there and don't mind driving to Hollywood across alligator alley, I can give you the name of my neuro.

Dr. Mayur Maniar
Sunrise Medical Group
Neurologist
(954) 981-3850
4925 Sheridan Street, #200
Hollywood, FL 33021

Title: Re: is my medicine obsolete
Post by Lizzie2 on Jan 23^rd, 2006, 10:43am

The above is true about Sansert no longer being available in the US. However, it is still available through a compounding pharmacist if you're able to get a prescription for it, find a compounding pharmacist, and pay for it! :)

In the meantime - the sister drug to Sansert is something called Methergine (Methylergonavine). If Sansert worked that well for you, then that's always an option.

Good luck,
Carrie

Title: Re: is my medicine obsolete
Post by Guiseppi on Jan 23^rd, 2006, 11:01am

I'm like you, when I'm off cycle I hide from the beast. Visiting the board scares me into thinking they'll come back. Probably not the most logical thought process but the best way I can explain it. I've been a cop for 26 years, been stabbed, shot at, beaten up, stitched up more times then I can recall but nothing scares me like these stupid head aches. (Rest asurred I'll get nailed now from a few of the regulars!!!)

If you haven't tried lithium you might wanna ask your doctor about it. It causes me very few side effects and blocks 70-80 percent of my ha's the ones that break through I can knock down with oxygen and cafergot. Do hope you find something that helps.

Guiseppi

Title: Re: is my medicine obsolete
Post by BobG on Jan 23^rd, 2006, 11:21am

on 01/23/06 at 08:44:36, toadisland wrote:

i tried oxygen once. it didn't work.

Once? What was the flow setting? What mask did you use?
Once?

Title: Re: is my medicine obsolete
Post by chewy on Jan 23^rd, 2006, 12:08pm

Quote:

i tried oxygen once. it didn't work.

How did you administer the O2. That technique has changed (for the better) quite a bit just over the last year or so.

Title: Re: is my medicine obsolete
Post by Linda_Howell on Jan 23^rd, 2006, 12:16pm

Quote:

And he asked just the simplest question.

And he was given an answer/reply within 24 mins.

He was also given other advice about 02, etc. from others who do their homework AND stick around to offer support. Visiting the board will NOT...repeat NOT, bring on an attack.

Linda

Title: Re: is my medicine obsolete
Post by Racer1_NC on Jan 23^rd, 2006, 12:23pm

on 01/22/06 at 21:20:20, toadisland wrote:

i've been taking sanserts (methysergide maleate) for maybe 30 years - as i need it. the pharmacies seem now onot to know what it is,

If you can find a compounding pharmacy, they can make the med for you.

Bill

Title: Re: is my medicine obsolete
Post by floridian on Jan 23^rd, 2006, 1:38pm

That med is obsolete. It has been replaced by the product at www.clusterbusters.com

Title: Re: is my medicine obsolete
Post by Ghost on Jan 23^rd, 2006, 7:13pm

Remember stick and jab, stick and jab. Oh yea dont forget to duck!!!