Author |
Topic: Cluster buddy needs vibes and advice (Read 511 times) |
|
Cerberus
New Board Hall of Famer
Whomever said that two heads are better than one?
Gender: 
Posts: 2117
|
 |
Cluster buddy needs vibes and advice
« on: May 8th, 2004, 7:44am » |
 Quote  Modify
|
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
|
|
 IP Logged |
I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
|
|
|
daffyswacky
New Board Junior
Do the voices in my head scare you?
  
Gender: 
Posts: 66
|
 |
Re: Cluster buddy needs vibes and advice
« Reply #2 on: May 8th, 2004, 4:17am » |
Quote Modify
|
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 
|
|
IP Logged |
If you're not living on the edge...you're taking up too much space
|
|
|
Renee
CH.com Alumnus
New Board Hall of Famer
May we all find some pf time! Is it summer yet?
Gender:
Posts: 1060
|
|
Re: Cluster buddy needs vibes and advice
« Reply #3 on: May 8th, 2004, 6:08am » |
Quote Modify
|
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
|
|
IP Logged |
23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
|
|
|
The mad viking
CH.com Alumnus
New Board Hall of Famer
Always Look on The Bright Side of Life
Gender:
Posts: 3135
|
|
Re: Cluster buddy needs vibes and advice
« Reply #4 on: May 8th, 2004, 7:06am » |
Quote Modify
|
everything i have is on the way
Svenn
|
|
IP Logged |
Always Look on The Bright Side of Life
|
|
|
Lizzie2
CH.com Alumnus
New Board Hall of Famer
"L'Chaim"~Hebre w Toast~"To Life"
Gender:
Posts: 4458
|
|
Re: Cluster buddy needs vibes and advice
« Reply #5 on: May 8th, 2004, 7:25am » |
Quote Modify
|
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!
Hugz,
Lizzie
|
|
IP Logged |
|
|
|
OneEyeBlind
New Board Hall of Famer
Yea, I can do this
Posts: 574
|
|
Re: Cluster buddy needs vibes and advice
« Reply #6 on: May 8th, 2004, 8:02am » |
Quote Modify
|
HUGE vibes going out for Athos
|
|
IP Logged |
One cannot step twice in the same river, for fresh waters are forever flowing around us.
|
|
|
Giovanni
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 764
|
|
Re: Cluster buddy needs vibes and advice
« Reply #7 on: May 8th, 2004, 8:07am » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
Woobie
CH.com Alumnus
New Board Hall of Famer
I luv you guys!!!!!!!!
Gender:
Posts: 3800
|
|
Re: Cluster buddy needs vibes and advice
« Reply #8 on: May 8th, 2004, 8:57am » |
Quote Modify
|
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 
|
|
IP Logged |
|
|
|
miapet
New Board Hall of Famer
what doesn't kill me makes me stronger
Gender:
Posts: 676
|
|
Re: Cluster buddy needs vibes and advice
« Reply #9 on: May 8th, 2004, 9:04am » |
Quote Modify
|
*positive light and energy*
|
|
IP Logged |
Clusterbusters Rock
www.clusterbusters.com
|
|
|
suzy617
CH.com Alumnus
New Board Hall of Famer
Love is friendship set on fire
Gender:
Posts: 1902
|
|
Re: Cluster buddy needs vibes and advice
« Reply #10 on: May 8th, 2004, 9:44am » |
Quote Modify
|
Pain free vibes going out to Athos.
Hope your feeling better soon...
Suzy
|
|
IP Logged |
When God measures men, He puts the tape around the heart, not the head.
|
|
|
helpless23
New Board Old Timer
Gender:
Posts: 269
|
|
Re: Cluster buddy needs vibes and advice
« Reply #11 on: May 8th, 2004, 9:53am » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
purpleydog
CH.com Alumnus
New Board Hall of Famer
Posts: 2240
|
|
Re: Cluster buddy needs vibes and advice
« Reply #12 on: May 8th, 2004, 10:12am » |
Quote Modify
|
From someone who most meds/ O2 doesn't work on, lots and lots of painfee vibes headded to Athos! 
purpleydog
|
|
IP Logged |
|
|
|
Luke63
New Board Hall of Famer
For sale: 1 BIG BARKING HEAD Price: Free
Gender:
Posts: 1182
|
|
Re: Cluster buddy needs vibes and advice
« Reply #13 on: May 8th, 2004, 10:23am » |
Quote Modify
|
Lots of Vibes comin from me!!
Sure the O2 doesn't work? Is it being used properly?
Hoping for PF days....Luke
|
|
IP Logged |
I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
|
|
|
broomhilda
CH.com Alumnus
New Board Hall of Famer
Ride it!
Gender:
Posts: 2533
|
|
Re: Cluster buddy needs vibes and advice
« Reply #14 on: May 8th, 2004, 11:16am » |
Quote Modify
|
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
|
|
IP Logged |
Suck it up Princess...
|
|
|
cipher_cat
New Board Newbie
miau?
Gender:
Posts: 24
|
|
Re: Cluster buddy needs vibes and advice
« Reply #15 on: May 8th, 2004, 11:49am » |
Quote Modify
|
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!
|
|
IP Logged |
|
|
|
Edna
New Board Hall of Famer
Gender:
Posts: 1596
|
|
Re: Cluster buddy needs vibes and advice
« Reply #16 on: May 8th, 2004, 2:49pm » |
Quote Modify
|
You requested and we supply upon demand.
Athos, hoping relief is now headed straight to you.
pf wishes,
EDNA
|
|
IP Logged |
|
|
|
bobkip
New Board Old Timer
I love YaBB 1G - SP1!
Gender:
Posts: 492
|
|
Re: Cluster buddy needs vibes and advice
« Reply #17 on: May 8th, 2004, 2:58pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
Leesa
New Board Hall of Famer
Gender:
Posts: 1950
|
|
Re: Cluster buddy needs vibes and advice
« Reply #18 on: May 8th, 2004, 10:19pm » |
Quote Modify
|
Vibes and Prayers Athos. Hope the beast leaves you soon (like now would be good) and NEVER returns hun.
Leesa 
|
|
IP Logged |
"The truth of the matter is that you always know the right thing to do. The hard part is doing it." General H. Norman Schwarzkopf
|
|
|
stevegeebe
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 1342
|
|
Re: Cluster buddy needs vibes and advice
« Reply #19 on: May 8th, 2004, 10:40pm » |
Quote Modify
|
Neurontin+Verapamil. Lots of it.
See the Doc.
Vibes.
Steve G
|
|
IP Logged |
|
|
|
katethecelt
New Board Veteran
Gender:
Posts: 158
|
|
Re: Cluster buddy needs vibes and advice
« Reply #20 on: May 8th, 2004, 11:24pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
5-string
CH.com Alumnus
New Board Old Timer
Nothing is accomplished without passion
Gender:
Posts: 416
|
|
Re: Cluster buddy needs vibes and advice
« Reply #21 on: May 9th, 2004, 12:31am » |
Quote Modify
|
Strong ass vibes headed your way Athos. The clouds will part soon, my friend.
...Mark..
|
|
IP Logged |
|
|
|
Tiannia
New Board Hall of Famer
Life does not apologies......
Gender:
Posts: 3241
|
|
Re: Cluster buddy needs vibes and advice
« Reply #22 on: May 9th, 2004, 6:24pm » |
Quote Modify
|
on May 8th, 2004, 10:40pm, 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
|
|
IP Logged |
The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
|
|
|
kolinshaw
New Board Newbie
Gender:
Posts: 5
|
|
Re: Cluster buddy needs vibes and advice
« Reply #23 on: May 9th, 2004, 9:46pm » |
Quote Modify
|
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
|
|
IP Logged |
In times of trouble we turn for help to friends who we think may care, but it's in times of trouble that we find most of our friends not there..!
|
|
|
Kevin_M
CH.com Alumnus
New Board Hall of Famer
withered branches grow green again.
Gender:
Posts: 6184
|
|
Re: Cluster buddy needs vibes and advice
« Reply #24 on: May 9th, 2004, 11:10pm » |
Quote Modify
|
Adviseless but vibefull Athos.
Hang in.
Kevin M
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss