Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> DESPERATELY SEEKING 
        
(Message started by: Steffany on Aug 21^st, 2002, 10:44pm)

Title: DESPERATELY SEEKING
Post by Steffany on Aug 21^st, 2002, 10:44pm

This is my second post in the last five mins. I need info from you if you have tried numberous meds, and treatment. My grandfather (Bill) has suffered 35 years. We have taken him to Mayo twice, and numberous doctors. Opinions vary, but most agree he is one of the most severe cases they have encountered. I just want to help him if possible. I need to know what works best for severe sufferers.

Title: Re: DESPERATELY SEEKING
Post by rick on Aug 22^nd, 2002, 1:01am

Steffany,

Is he Episodic or Chronic?

-R

Title: Re: DESPERATELY SEEKING
Post by Svenn on Aug 22^nd, 2002, 1:45am

First of all Welcome to Clusterville
So sorry to hear about your granddad
I just want to add what helps me

I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily

This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway

Your friend

Svenn

Title: Re: DESPERATELY SEEKING
Post by Bob P on Aug 22^nd, 2002, 8:40am

http://www.clusterheadaches.org/library/general/management_of_ch.htm

Title: Re: DESPERATELY SEEKING
Post by Steffany on Aug 22^nd, 2002, 9:50pm

Thanks for the replies. My grandfather does not own a computer, I am printing all replies and mailing them to him. At least he will know that other people suffer, and he is not in this boat alone. I am not sure whaht category his headaches are. He will have them for up to 2 months and then maybe not another one for 6 months to 2 years. I feel so uninformed. But as a personal opinion I also feel most doctors are also pretty uninformed. The mayo clinic told us two years ago about a procedure that involves clipping a nerve in his neck. The down side to this procedure is facial paralysis and sometime the pain can move to the other side of the head. The procedure has a success rate of 30%. If you have has this procedure, or different info let me know.

Title: Re: DESPERATELY SEEKING
Post by Ted on Aug 23^rd, 2002, 12:53am

Steffanyy. He's episodic. The difference being someone who doesn't get a remission for two weeks or more is considered chronic (Give it a rest you all. She's doing research for her grandfather)
OK. First of all, don't let him get clipped. The lousy rate of success accompanied with the fact it will give awful side-effects should be a big clue for you all to not get the surgery.
Pure oxygen with a non-rebreather mask at 8-10 liters per minute has helped many people abort attacks.
How old is your grandfather? Can you talk to him about a method of treatment that is not-all-that-kosher? There's the mushroom therapy that has helped many but he has to be willing to go on a very light trip. It's one of those things a granddaughter would probably have a better chance talking to the grandfather about then the dad to the son/daughter.

Title: Re: DESPERATELY SEEKING
Post by Bob P on Aug 23^rd, 2002, 8:35am

Stef,

I've been episodic, like your Grandpa, for 32 years. I've tried:
Fiorinal - no good
Inderal - no good
Prednisone - good
Oxygen - great
Cafergot - good
verapamil - nothing
Topomax - nothing
opiates - no good
Imitrex - great
amerge - good
Maxalt - good
Zomig - good
Lidocaine - nothing
Indocine - nothing

and probably a couple I've forgotten. For me - Oxygen along with cafergot or Imitrex is the best.

Title: Re: DESPERATELY SEEKING
Post by RichardN on Aug 23^rd, 2002, 9:47am

Hi Stef and welcome

JUST SAY NO!! .......to tri-nerve cut. There are those here who tried it..........only to have the beast move to the other side of the face and leave the cut side paralized for life, daily eyedrops required plus a host of other problems. Do a search of the message board - - tri-nerve cut - - then move on. There's help here.
I'm 55 and chronic since 1/01. Didn't find this place til last Feb........a true blessing. Was having 6-8 CHs per day, 20 min - 2 hrs, KIP 5-9. MRI, CATscan, non-working meds til coming here and finding a "name for the pain" and steps to take to alleviate same. The beast is still there, but I have my life back.
For me, Verapamil (360 SA mg daily) as preventative and 02 as abortive. The oxygen is wonderful and will usually stop an attack within ten minutes, especially if used as soon as shadow appears. I keep an E tank by the bed and carry a B tank with me at all times, Spend about $30 per month on 02 refills. Doesn't work for everyone, but for about 70% of us it's a godsend.
Read, read, read.....explore all buttons to the left, copy for your grandad AND HIS DOCTORS.
There's hope, he's not alone. There's always someone awake here,
Richard