Clusterheadaches.com Message Board


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

        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> First Post
        
(Message started by: MPMIII on Sep 20^th, 2007, 5:15pm)

Title: First Post
Post by MPMIII on Sep 20^th, 2007, 5:15pm

I have been suffering from CH for about a year now. I have yet to go more than 4-5 days PF. I was diagnosed by a local neurologist, but had not seen any relief. The only relief that I did get was trex as an abortive. Tried O2 but does not seem to work. I recently went to NYC to see a headache specialist, and he seemed to know much more than my local. He put me on a strong dose of Dexamethasone (steroid) for five weeks tapering off. He also put me on verapamil (360 mg). My previous Dr. had me on verapamil (80mg). After starting these new meds, the side effects are pretty bad. I think that they are from the steroid. Nausea, hiccups, insomnia, vomiting, heartburn. Has any one been on the above prescribed? If so, did it work on breaking a cycle. Did the side effects taper off? If it does work, I can deal with the side effects for a while. Any input would be appreciated. This website has been a great help.

Thanks all.

Malcom

Title: Re: First Post
Post by E-Double on Sep 20^th, 2007, 7:41pm

Those side effects are form the steroids.
You should have been perscribed an H2ra (zantac)or a ppi (prilosec)to help with the heartburn which can be severe.
Some may get nauseous from the verap or at least dizzy. it takes a few weeeks to get used to for some.

The steroids should give you a bit of a break while the verap. builds up.

Many go as high 900+ while others find a magic bullet at 480....

The preventative is not meant so much to break cycle but to alleviate symptoms = decrease intensity and frequency.

we're all different.

Title: Re: First Post
Post by MPMIII on Sep 20^th, 2007, 8:36pm

Thanks. I spoke with the doc after my post, and he lowered the dose on the steroid from 24 mg to 16 mg. Hoping this makes a difference. The heartburn is severe, worse than I thought heartburn could be, but if there is relief around the corner than I am willing to put up with it for a while before changing course. I appretiate the insight. As I said before, this board has helped me quite a bit, if not for any relief, the fact that there are others out there that understand the severity of this unimaginable pain. Thanks.

Regards,

Malcom

Title: Re: First Post
Post by E-Double on Sep 20^th, 2007, 9:59pm

That is a rediculously high dose of steroids and how were you taking it???? A taper??
I may have misunderstood....

That is equivalent to 106+ mg of prednisone
http://www.globalrph.com/steroid.cgi

WE tend to take 60-80 tops of a taper of prednisone.
When I used decadron (not IV) I think I started much lowere because it is soooo much stronger than pred.

Who did you see in NY?
The best would be Dr. Newman or Christine Lay at Roosevelt.
I've heard Marc Green is good as well at Columbia.

Be well!

Title: Re: First Post
Post by MPMIII on Sep 21^st, 2007, 9:38am

Taking 12 mg twice a day. Just lowered it to 16mg. Comes in a pill form.

Week 1-- 24mg
Week 2-- 16mg
Week 3-- 8mg
week 4-- 4mg
week 5-- 2mg

The neurologist is Dr. Carver at Mt. Sinai. Although the side effects are awful, I have not had a CH or hint of one in five days. This is close to a record for me. Knock on wood. Thanks for all the help.

Regards,

Malcom

Title: Re: First Post
Post by UN solved on Sep 21^st, 2007, 9:07pm

I agree with everything Eric has said. A very good reply E ! ;)

That dose of steroids is very high and is what is causing the stomache problems / heartburn. Lowering the dose should help out. Make sure you DO NOT abruptly stop taking the steroid or you will most likely be very sick or worse :-X IT MUST BE TAPERED !! The longer you take it (and the bigger the dose) the more side effects you will have.

Goodluck and I Hope you find a prevent that helps soon. Now that you know the Trex helps, get as many as you can. STOCKPILE IT .. even if the attacks stop ... KEEP STOCKPILING IT !!

PF Wishes

UNsolved

Title: Re: First Post
Post by barry_sword on Sep 22^nd, 2007, 6:36am

Hi Malcom. I am on 480mg daily of Verapamil and use o2 as an abortive. You said you tried o2 but not much success. What flow rate are you using and what kind of mask?
I use a 15 lpm regulator with a Clustermasx but also use a non-rebreather mask with my portable unit in my car and it works fine.

I hope you find what works for you.

Barry