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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Husband has CH  and Questions
        
(Message started by: mawmaw on Jan 26^th, 2005, 9:18pm)

Title: Husband has CH and Questions
Post by mawmaw on Jan 26^th, 2005, 9:18pm

I don't post much on this board but I do read alot. I have tried to get my hubby to post but he is computer phobic. Has anyone here been to the Headache and Wellness Center in Greensboro NC? We have been once and saw Dr. Adelman. My hubby has another appointment tomorrow and all the things they gave him: Reg. Verapamil instead of the SR he was taking, Frova, and axsian to put up his nose. Nothing has helped. He has a list of meds that he has already been tried on. He has had these headaches since March of 2004 with not much painfree time, never more than a week. He has tried the alternative treatment ,but has had other issues with that. Any suggestions would be appreciated.
Thanks Cindy

Title: Re: Husband has CH and Questions
Post by BarbaraD on Jan 27^th, 2005, 6:57am

Go to the left and read everything on meds and what's worked for others. Go back to the neuro armed and MAKE him talk to you.

What about O2 - that works for so many.

The hard part about ch is finding what works "for you". We all react differently to different meds.

DHE IV works to break a cycle (sometimes) for most. But it's a last resort in my book (been thru it more times than I want to think about), but it does work.

Until he finds something that is working, he probably needs to visit the neuro regularly.

Sorry not to have an answer, but most of us have tried, failed, tried again and if we're lucky we find something that works for a while. It's still a crap shoot.

Hugs BD

Title: Re: Husband has CH and Questions
Post by Renee on Jan 27^th, 2005, 8:02am

DHE via IV typically will stop the ch when nothing else has worked.

DHE over several days, inpatient, gave me 2 months of totally pf time.

O2 started working for me again after the DHE inpatient stay.

Arm yourself with info and go to the doc demanding a change. Do this until you find the cocktail that helps him.

Is he taking coQ10, magnesium and b vitamins?

good luck,
Renee

Title: Re: Husband has CH and Questions
Post by WifeofCHSuffer on Jan 27^th, 2005, 10:25am

Renee,

What is coQ10? What does coQ10, magnesium and b vitamins due for CH/migraine suffer?

Cathy

Title: Re: Husband has CH and Questions
Post by miapet on Jan 27^th, 2005, 11:22am

add calcium to that mix *g* . . .something about the cal-mag aids with sleep (I think) . . .not sure what else . . .Pinkfloyd and Giovanni can answer those questions though *smiles*
*positive light and energy*
miapet
edit: coQ10 is a supplement . . .like vitamins/minerals
*pl&e*
mia

Title: Re: Husband has CH and Questions
Post by mawmaw on Jan 27^th, 2005, 11:44pm

Thank you all for your input. We went NC today and we will not being going back. My husband has had his fill of arrogant holier than thou doc's. I blew up and gave the doc a mouth full, then we left. We will be looking into the supplements. thank you again.

Cindy

Title: Re: Husband has CH and Questions
Post by TomM on Jan 28^th, 2005, 12:39pm

What about a Prednisone Taper? Ask your doc about that.

Be sure to try the O2.

Good Luck.

TomM

Title: Re: Husband has CH and Questions
Post by BigRick on Jan 28^th, 2005, 3:01pm

The Prednisone has always worked with me.Of course the side effects(weight gain,bloating)arent that great.Ive only used it when Ive been desperate and overwhelmed by a long string of headaches(months).
If he is at the end of his string and cant take anymore he really does need to get some temporary relief.I would talk to my Dr. about the prednisone,but he needs to take something prevenative also for when he comes off the Prednisone cycle.Lithium,Keppra and Depakote take a little time to get into your blood but they have helped make my CHs more tolerable.A level 6 is better than a level 10.
Good luck.

Title: Re: Husband has CH and Questions
Post by mawmaw on Jan 28^th, 2005, 9:20pm

Thank you dear people for your advice. My husband has had these headaches since March 2004. He has taken:
prednizone
depakote
topamax
lithium
verapamil
firocet
imitrex injections
indocin
naproxsyn
relaplax
maxalt
amerge
frova
migranal(DHE nasal spray)
DHE IV
stadol injections and nasal spray
demerol injections
Uses O2 with nonrebreather mask
I know that I am leaving some out because I am at work and not at home with the diary we keep. I really do appreciate all the kind help you offer. And if anyone else knows of any other options we would appreciate the advise. He has tried the shroom treatment but that hasn't gone well because of some other medical problems that he has.

Cindy

Title: Re: Husband has CH and Questions
Post by Bob_Johnson on Jan 29^th, 2005, 12:45pm

Sorry about your experience with Adelman. You might call Bowman Gray in Winston to see what they have--such a big operation must surely have some resources and/or call Duke.

For ideas, explore:

WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.

The first book is best but the second is good if you can't handle the medical terminology of the first:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: Husband has CH and Questions
Post by mawmaw on Jan 29^th, 2005, 1:00pm

Thank you for the information and the reccomendations on the books. Will start looking at bookstore today. We live in Virginia and are planning to go back to the University Of Virginia Medical Center and see the doc that was treating my husband there. He has called and would like to continue helping my husband. We both know that there is no quick fix and that there is always someone here to lend a helping hand and a kind word.
Cindy

Title: Re: Husband has CH and Questions
Post by K-9 on Jan 31^st, 2005, 3:39am

Good luck with your search. Doctors can be frusterating at times. Wishing your husband Pain free times. Oh and by the way, you're doing a great job as a supporter, don't forget to give yourself a pat for that. You guys get forgotten sometimes ;)