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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Need your input Brothers and Sisters!
        
(Message started by: mynm156 on May 31^st, 2006, 11:57pm)

Title: Need your input Brothers and Sisters!
Post by mynm156 on May 31^st, 2006, 11:57pm

I am Cluster Head x 13 years or so Chronic "OFFICIALLY" 2 years now. I am at my end as far as meds go my current regiment is Trex NS and Stadol NS as needed Verapimil 240mg twice a day, Lopressor50mg twice a day and 9mg melatonin @ night. I dont respond to O2 and have tried pretty much every other drug known to help us. I have used Cluster Buster Therapy still out to lunch on the results. I would like to know what you do to treat attacks and or help prevent. I have a pretty good PCP that will help me but I want to know what other meds or treatment regiments you use that maybe I have not tried. If you would prefer to IM me thats totally cool I am just looking for my families input as I continue to dance with the Devil.

Good Vibes and Pain Free Days Ahead For Us All!!

Your Brother in Pain

MYNM156

Title: Re: Need your input Brothers and Sisters!
Post by nani on Jun 1^st, 2006, 12:17am

Frankly, Howard, Clusterbuster treatments are the only thing that has worked well for me. It took me awhile before I could say that with unwavering certainty, though. I had to stick with it, stay detoxed, and learn when to maintenance dose. I still battle regularly, as it isn't a cure. As a treatment, though, it's hard to beat. I average 40 days between doses. 40 days! As a 5 year (former) chronic and a 33 year sufferer, 40 days is well, to quote a friend "Bloody brilliant!".
Kudzu helped to take the edge off, but it didn't last, I'm afraid. I was also on a bucket of other meds everyday at that time as well.
If you want to reconsider busting, please let us know. Someone can help "walk you through it" and hopefully help the process along.
hugs and PF wishes, nani

Title: Re: Need your input Brothers and Sisters!
Post by MJ on Jun 1^st, 2006, 12:55am

I'm with Nani

RC seeds are the only thing that has "ever" worked for me in 30 years.
I modified the treatment a bit untill it worked and have been taking a single redose about every 20 days or so when I feel CH symptoms coming back.
I take the seeds at night before bed and sleep like a baby
Though I am episodic, untill the seeds I never had a cycle last less than 4 or 5 months and a couple lasted 3 years.

The treatment that finally broke the cycle for me is here

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1138385923

Title: Re: Need your input Brothers and Sisters!
Post by Mr. Happy on Jun 1^st, 2006, 1:40am

When you get to the end of your rope, DETOX, then try LDN - Low Dose Naltrexone. About 5 mg/day. One chronic beta-tester is doing pretty good. O2 may even start doing it's thing.

I'm pulling for you. We're all in this together.
RJ

Title: Re: Need your input Brothers and Sisters!
Post by Guiseppi on Jun 1^st, 2006, 10:29am

26 years of episodic battles. Lithium has been the most consistent preventative. I'm 46, male, about 190 lbs. I take 300mg capsules 4 times a day, 1200 mg daily. Takes a little over a week to get up in my system. I use a prednisone taper during that time.

For break thru's I use oxygen and oral cafergot. If I'm caught away from my oxygen I use imitrex. Wishing you luck, hurting sucks.

Guiseppi

Title: Re: Need your input Brothers and Sisters!
Post by BobG on Jun 1^st, 2006, 1:24pm

Quote:

Verapimil 240mg twice a day

Many people are on higher, much higher doses. Have you talked to your doctor about ramping up?

Title: Re: Need your input Brothers and Sisters!
Post by E-Double on Jun 1^st, 2006, 1:33pm

I'm with ya on the 2yrs chronic, however I detoxed completely in March and though I still have attacks life is so much easier.

Good luck

Title: Re: Need your input Brothers and Sisters!
Post by unsolved1 on Jun 1^st, 2006, 1:38pm

As with any drug, be careful if/when you increase the dose of Verap. I couldn't handle more than 400mg day. It slowed my heart rate down and lowered my BP too much :o

Does the Trex NS stop the attacks quickly ? Have you tried the jabs ?
If you can, lose the Stadol ! It's going to bite you in the ass.

Goodluck,
UNsolved

PS. I abort the big hits with Imitrex jabs (4mg). To prevent, I use DHE and/or Solu Medrol IV. You gotta know what you're doing if you resort to these drugs to prevent though.

Just remember that there is always something different to try. Very few people have really tried everything

Title: Re: Need your input Brothers and Sisters!
Post by Seed on Jun 1^st, 2006, 10:15pm

Nani,

I was hoping to take you up on your offer. I am in the position to try the clusterbuster treatments here very shortly and I have lots of questions. Is there anyone around who might be willing to answer some questions for me?

Thanks in advance!

Title: Re: Need your input Brothers and Sisters!
Post by mynm156 on Jun 1^st, 2006, 11:46pm

We did ramp up my verap but it didnt seem to make a difference. Also with ther Lopressor I have to watch the usage of beta blockers and calcium channel blockers can cause me a little heart malfunction problem no body needs.

Title: Re: Need your input Brothers and Sisters!
Post by Pinkfloyd on Jun 2^nd, 2006, 1:42am

on 06/01/06 at 22:15:13, Seed wrote:

Is there anyone around who might be willing to answer some questions for me?

There's always someone around to answer questions.

Ask away, but I would suggest starting a new thread instead of piggybacking and redirecting someone else's thread. Helps to keep things separated and with a thread properly named, it'll be more likely to attract the people that may have some answers.

Bobw

Title: Re: Need your input Brothers and Sisters!
Post by rhino on Jun 7^th, 2006, 11:46pm

Has anybody ever tried a Cortisone injection in the Trigeminal Nerve aera?

Title: Re: Need your input Brothers and Sisters!
Post by chewy on Jun 8^th, 2006, 8:30am

Have you tried IV DHE?

Title: Re: Need your input Brothers and Sisters!
Post by Jasmyn on Jun 8^th, 2006, 8:31am

on 06/07/06 at 23:46:29, rhino wrote:

Has anybody ever tried a Cortisone injection in the Trigeminal Nerve aera?

Yes, cortisone with an anti-inflammatory on a regular basis with my GP, over a four week period but unfortunately it did not stop the cycle or lessened the intensity of the next hit for me.

Title: Re: Need your input Brothers and Sisters!
Post by rhino on Jun 11^th, 2006, 5:03pm

I have got to find myself a new Doc. can anybody recomend a good Neuro or Headache clinic in Houston Texas

Title: Re: Need your input Brothers and Sisters!
Post by smfaison on Jun 13^th, 2006, 10:19pm

I am 50 years old and have been an episodic all of my life. I usually get a 4 month spell every other year. I just started up a spell. I am trying Relpax with Topamax and Stadol. So far I think the Relpax is more effective than my old favorite, Imitrex because it lasts longer with no rebounds so far. But this spell is only a few weeks old! I will keep you posted. I used to do the prednisone, Sansert, Imitrex routine, with moderate success, but they took Sansert off the U.S. market. I thought I would have a panic attack!

Title: Re: Need your input Brothers and Sisters!
Post by FramCire on Jun 14^th, 2006, 6:36pm

How about trying mygranol?

The IV DHE seems to also have good success.

Topomax (which I hate because of the side effects) has also had success.

Have you (and your doctor) read this? http://www.brightok.net/~mnjday/chtherapy.pdf

It details a ton of stuff. lots of suggestions.

Anyway. good luck. Here's to lots of PF days ahead for you!