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        New Message Board Archives >> 2004 Posts >> Cluster buddy needs vibes and advice
        
(Message started by: Cerberus on May 8^th, 2004, 7:44am)

Title: Cluster buddy needs vibes and advice
Post by Cerberus on May 8^th, 2004, 7:44am

One of our own is suffering pretty badly right now, he is alergic to triptans and has had no success with Lithium and O2... :(

Is there anything else anyone knows of that has helped them?

Vibage for Athos would be nice too ;)

Ramon

Title: Re: Cluster buddy needs vibes and advice
Post by Mastifflvr28 on May 8^th, 2004, 9:02am

AWWWWWW :(

Big huge vibes going up to Athos!!!
Hope he gets a break soon...sigh :(
Mast

Title: Re: Cluster buddy needs vibes and advice
Post by daffyswacky on May 8^th, 2004, 4:17am

sorry to hear about your friend...my dr has me on Fioricet....(triptans trigger my panic attacks) i also take topomax but i been on that for a good bit for other pain relief but i know its given for clusters..hope it helps, fioricet takes off just the slight edge but then again i'm still in the trial and error period here...gl
~~~~~ daffy ~~~~~~~~
i also take prednisone for the inflamation ;;D

Title: Re: Cluster buddy needs vibes and advice
Post by Renee on May 8^th, 2004, 6:08am

Ramon,

Doc Sheftell at NECH has me taking Zonegran as a preventative and I'm doing better than I have in a long time for being chronic.

He also has me taking magnesium, coQ10 and melatonin.

I don't get any relief with o2 but I do have one triptan i can use, Relpax.

Sending megga vibes to Athos!!!!
Renee

Title: Re: Cluster buddy needs vibes and advice
Post by Svenn on May 8^th, 2004, 7:06am

everything i have is on the way

Svenn

Title: Re: Cluster buddy needs vibes and advice
Post by Lizzie2 on May 8^th, 2004, 7:25am

Aww vibes going to Ken!! Hang in there!!

I haven't tried too many different things yet, but when I was on a very high dose of verapamil (960mg), I did get a good reduction in the frequency and severity of attacks. I couldn't stay on that dose though with the blood pressure, but some people handle it well. Right now, Amerge is the only thing that really helps me, but that's a triptan, so I don't know! I'm sure other people will have some more advice!

[smiley=hug.gif]

Hugz,
Lizzie

Title: Re: Cluster buddy needs vibes and advice
Post by OneEyeBlind on May 8^th, 2004, 8:02am

HUGE vibes going out for Athos

Title: Re: Cluster buddy needs vibes and advice
Post by Giovanni on May 8^th, 2004, 8:07am

Hi Cerberus,

Have him try some melatonin one hour before bedtime. People here take it from 3mg to 15mg. You have to experiment with the dosage, but the magic number for me was 9mg. Some B-50 complex 3X a day and a good multi-vitamin would be in order. This might take a while to work.

Also, 5-HTP 50 mg X 3 a day in combination with the above (can not be used with certain medications--check)

Green or black tea three or four time a day (Anti inflammatory). These are some of the home remedies that I have used with good results.

Good luck,

John

Title: Re: Cluster buddy needs vibes and advice
Post by Woobie on May 8^th, 2004, 8:57am

Hey Athos -

Know you're hurting right now and got a lot on your plate. And STILL you help Ramon!!!!!!!!!!!!

You are a sweetheart, and I hope you can find some advice here that will help!!! You deserve a break!!

PF VIBES To ya!!

Tina :-*

Title: Re: Cluster buddy needs vibes and advice
Post by miapet on May 8^th, 2004, 9:04am

*positive light and energy*

Title: Re: Cluster buddy needs vibes and advice
Post by suzy617 on May 8^th, 2004, 9:44am

Pain free vibes going out to Athos.

Hope your feeling better soon...

Suzy

Title: Re: Cluster buddy needs vibes and advice
Post by helpless23 on May 8^th, 2004, 9:53am

So sorry to hear! I'm sorry that I don't have any advice too, but I have plenty of vibes!

[{Serious Vibes]]

Much Love,
Toni

Title: Re: Cluster buddy needs vibes and advice
Post by purpleydog on May 8^th, 2004, 10:12am

From someone who most meds/ O2 doesn't work on, lots and lots of painfee vibes headded to Athos! :) :) [smiley=hug.gif] :) :) :)

purpleydog

Title: Re: Cluster buddy needs vibes and advice
Post by Luke63 on May 8^th, 2004, 10:23am

Lots of Vibes comin from me!!
Sure the O2 doesn't work? Is it being used properly?
Hoping for PF days....Luke

Title: Re: Cluster buddy needs vibes and advice
Post by broomhilda on May 8^th, 2004, 11:16am

Gosh Ramon, no advice here but so many others I hope can, BUT

I got tons of Canadian vibage, prayers and hugs coming your way, over to Athos!

Keep fighting!

Andrea

Title: Re: Cluster buddy needs vibes and advice
Post by cipher_cat on May 8^th, 2004, 11:49am

i understand how heartbreaking it is to have triptans fail you. hang in there Athos! =( we'll both find our niche.

does cold o2 at higher flow or ice packs help? try avoiding sex and fatty foods before attack hours as stupid as that might sound... i dunno. i just really wish i could help more. all the pain free vibes i have i'm sending your way!

Title: Re: Cluster buddy needs vibes and advice
Post by Edna on May 8^th, 2004, 2:49pm

You requested and we supply upon demand.

Athos, hoping relief is now headed straight to you.

pf wishes,
EDNA

Title: Re: Cluster buddy needs vibes and advice
Post by bobkip on May 8^th, 2004, 2:58pm

Vibes for Athos. The neuro I went to suggessted accupressure on the ocipital nerve located behind each ear at the base of the skull. There's a little notch there. Press hard and hold for 30 seconds. I've been out of cycle so haven't tried it but back when I was chronic I had some success with general accupressure that included this pressure point. It worked for a while but then quit.
Kip

Title: Re: Cluster buddy needs vibes and advice
Post by Leesa on May 8^th, 2004, 10:19pm

Vibes and Prayers Athos. Hope the beast leaves you soon (like now would be good) and NEVER returns hun.
Leesa :'(

Title: Re: Cluster buddy needs vibes and advice
Post by stevegeebe on May 8^th, 2004, 10:40pm

Neurontin+Verapamil. Lots of it.

See the Doc.

Vibes.

Steve G

Title: Re: Cluster buddy needs vibes and advice
Post by katethecelt on May 8^th, 2004, 11:24pm

I had to try both the regular and extended release Verapamil - the extended release didn't work for me. I take Neurontin as a preventative and increased my dosage while in a cycle. I couldn't take Prednisone, but Medrol worked great. I also drank tons of water.

Svenn's cocktail is legendary and I'm sure it's on the way.

(((HUGE Pain Free Vibes))) on the way to Athos!

Kate

Title: Re: Cluster buddy needs vibes and advice
Post by 5-string on May 9^th, 2004, 12:31am

Strong ass vibes headed your way Athos. The clouds will part soon, my friend.
...Mark..

Title: Re: Cluster buddy needs vibes and advice
Post by Tiannia on May 9^th, 2004, 6:24pm

on 05/08/04 at 22:40:16, stevegeebe wrote:

Neurontin+Verapamil. Lots of it.

See the Doc.

Vibes.

Steve G

I've tried Topomax (really bad side effects for me but others have had a pf times from it), Gabitril (did not really help me but it is another anti seizure med as well) and now I am on Neurontin. They still have me on Inderal hoping that they will get me on verapramil when I finally see the Neuro. The neurontin you have to work up the dosage as well , but I have had no side effects what so ever.

Huge PF Viges and energy headed you way Athos. Kick the Beasts ass.

-Tia

Title: Re: Cluster buddy needs vibes and advice
Post by kolinshaw on May 9^th, 2004, 9:46pm

I was "chronic" for 10 years & I had tried everything the neuro's had and could think of, however after retrying verapamil in a much bigger dose(I think 240mgx2) this has been the only prophylactic that has actually been able to alter the cluster cycle. Also personally I couldn't live without my o2, but it must be at least 8-12 litres p/m
I really hope they ease up a bit for you, all the best. Col

Title: Re: Cluster buddy needs vibes and advice
Post by Kevin_M on May 9^th, 2004, 11:10pm

Adviseless but vibefull Athos.

Hang in.

Kevin M

Title: Re: Cluster buddy needs vibes and advice
Post by Slammy on May 10^th, 2004, 12:29am

one word.... Cafergot!

Good Luck and vibes!

Slammy 8)

Title: Re: Cluster buddy needs vibes and advice
Post by ZAIRA on May 10^th, 2004, 11:20am

Hang in there... it WILL get better... it WILL get better... all the energy that I can spare is yours to use to kick its fucking ass..... :'( be strong!

Title: Re: Cluster buddy needs vibes and advice
Post by Gator on May 10^th, 2004, 6:27pm

I'm still too new to the whole thing to give advice and am still searching myself for that miracle preventative. Got my Zomig Nasal for aborting, but alas, it too is a triptan.

Prayers and vibes going out to Athos!!!

I hope you can find your magic bullet to kill the beast soon.

Gator

Title: Re: Cluster buddy needs vibes and advice
Post by Samantha_Smith on May 11^th, 2004, 12:42pm

Oh that sucks that you're allergic to triptans! Sorry to hear that you're having a tough time. Botox did wonders for me but many people don't have any success with it plus its very expensive. There's always narcotics (which have also helped me) but for the vast majority of people they are not effective plus they may leave you physically dependent . Please don't flame me---I'm just brain storming and throwing out ideas. Hope this helps. Hang in there.

P.S. Have you ever tried Migranal Nose Spray or DHE injections?

Title: Re: Cluster buddy needs vibes and advice
Post by athos on May 12^th, 2004, 2:20am

I appreciate the s upport again... I guess that what it is about... although running lean on good days... alla blurr.... Biggest thing that I miss right now is sleep.

Question does god read ch.com? doubt it. The more that life goes on the more I respect and try to understand Job from the bible... Wonder if he got CH???

This is what i Have done meds wise.....

Current -
Trileptol, Keppra, Mirapex, Oxycontin

List of stuff that I have been on...

Zonegran, lithium, cafregot, Topomax, Triptans, Preddnezone, Prozac, O2, Stadol, Mirganol, Midrin, ergostat, Lidocane, Baclophen, neurontin, Depakote, DHE self injections, Verapimil, amatryptaline, Composine, Torodol & Chicken soup.

I think that chicken soup has been the most effective.

Title: Re: Cluster buddy needs vibes and advice
Post by Woobie on May 12^th, 2004, 2:23am

Oh Athos......... :'(

Hang in there buddy!!!!!!!!!!!!!

Hope someone gave you some good ideas to try - and you can get some relief!!!!!!!!!

PF Vibes to you!
Tina :-*