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        Cluster Headache Help and Support >> Cluster Headache Specific >> Hi I'm new
        
(Message started by: LOOLA on Sep 7^th, 2007, 7:19am)

Title: Hi I'm new
Post by LOOLA on Sep 7^th, 2007, 7:19am

Hi everyone,

I stumbled upon this website by accident out of desperation, and almost burst into tears of joy!
My husband suffers from cluster headaches for years now, and no doctor could help us so far. He never tried any meds except for over the counter pain killers and sinutabs. All the doctors refers him for brain scans, which shows nothing. At this point I know more about cluster headaches than the doctors!

Title: Re: Hi I'm new
Post by Bob_Johnson on Sep 7^th, 2007, 9:19am

Sadly, many of us have had the same experience finding a good doc. If you can't locate someone with experience in headache, then try and find a doc who is open to learning from you. We are in a position to feed good medical information to guide the doc--but he must have an ego which allows him to receive!

Start by exploring the buttons (left): many good leads. Two sources for you to buy/print--since your education is the critical first step.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. 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.

=====
http://www.plainboard.com/ch/chtherapy.pdf

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

Title: Re: Hi I'm new
Post by DennisM1045 on Sep 7^th, 2007, 12:06pm

Hey Loola,

Welcome to our little corner of the Internet. You should encourage your husband to sign in and say hi. I encourage you to visit the supporter's board too. You need as much support as he does.

Once you've gotten some reading under your belt feel free to ask any questions you want. There are lots of helpful folks here and lot of combined knowledge to help you in the fight.

Take care...

-Dennis-

Title: Re: Hi I'm new
Post by ski2k on Sep 8^th, 2007, 1:12am

Welcome to the board! Sorry to hear you and your husband have to put up with all this. I, too, went through hell trying to get the right diagnosis. Was told for about 12 or 13 years it was just sinus problems, and was taking sinus pills, Tylenol, ibuprofin,.... anything I could get over the counter!! I finally stumbled across this site after the correct diagnosis, and I DID break out in tears!!
Read everything you can here, and print out treatments and the like to try, or give your doctor this web address. My past docs (and current) have checked this site out, and learned MUCH more than they knew before about CH.
SO... Is your husband had a Cluster Headache diagnosis yet, or is the first you've heard of it? If he does have it, ask your doctor to try Oxygen therapy to kill the headaches as soon as they start. That seems to be most of our first line of defense..

Well... read on, and welcome to you both!

Pain free wishes to your husband, and keep strong!

Adam

Title: Re: Hi I'm new
Post by EstieSA on Sep 17^th, 2007, 5:21pm

Welcome!

I see you're from SA too! 8)

Just shout if you need more "local" info...

Title: Re: Hi I'm new
Post by Ctech on Sep 17^th, 2007, 8:14pm

Hi Loola!

I went seven years thinking that I was alone with this hideous pain. I have found that most doctors have a “god complex” and are not willing to be taught anything –most want you to believe that they do know everything ::). I had a GP that I had been going to for nine years, and the last time that I went to him about my (then unknown) cluster headaches he just sat there looking at me like an idiot – not saying anything! He could not even admit that he did not know what I had.

The best advice that I can give you & your husband would be to do your own research and to figure out what treatment YOU would like to try. I have NO faith in doctors and I have learned that I am my own best advocate. Your husband does need to find a doctor that understands the nature of cluster headache though so he can get the prescriptions he needs when he needs them (02 is great!)

You have found a great place here and you and your husband will be glad to know that you are among people that REALLY know your pain. You should check out the OUCH link posted on the left of the page also.

Good Luck!

Chris

Title: Re: Hi I'm new
Post by GrandPotentate on Sep 17^th, 2007, 10:18pm

I'm another who went through a lot of dumb looks and ineffective drugs from doctors. I had a neuro experimenting with me and a whole lot of dopey migraine stuff. It didn't work,but after I sobered up after one cycle, I realized I had quit buying cigarettes (I was pretty hard-core smokey).

Thanks to one inquisitive GP, I got hooked up to try oxygen with very good results. Thanks to my kid's bartender, I found this site that has a lots of good folks going through the same thing. I've lost a good doctor, so am back in the dumb looks mode with a new GP. But I've found a good neuro for the next cycle.

Don't be too hard on the doctors. If you do the math, you'll find that most GP's might only meet one or two of us in an entire career. Keep shopping till you find one who is willing to read up on the subject, or refer you to an experienced neuro.

I hope you husband is reading up on this. Have him add a few comments when he's in the mood.

Title: Re: Hi I'm new
Post by Ctech on Sep 18^th, 2007, 4:48pm

Don’t be too hard on the doctors [smiley=huh.gif]

If someone comes to me with a problem/question in my line of work and I don’t have the answer, guess what? I take 15 min. or so out of my time to Google it and find the answer!

I would think that someone that has been to medical school would have enough brains to do the same.

I did say “most” doctors, I’m sure there are some out there that do care about the patient as much as their money.

I’m a little hardened I guess after all that I have been through with doctors, but I just don’t want someone putting all of their faith into a doctor(s) like I did and in turn suffer unnecessarily.

It’s kinda like putting all of your faith into a politician to secure the border – yeah right [smiley=laugh.gif]

Chris

Title: Re: Hi I'm new
Post by Wayne on Sep 18^th, 2007, 5:24pm

Hi Loola

Sorry you're here, you're among people who understand your desperation, welcome.

Ja there's a few South africans here now, all been through the same thing, this condition is not well known and even less understood here. However there are ways to beat it and people who know how.

From my side the biggest discovery I made here is Redbull, you have probably read about it in other posts , I promise you that it works. get your husband to try it. Secondly you need to get him to a doc who can prescribe a preventative like Verapamil or Topomax or the like, it may take some experimentation to find the right one but when you do it will change his life. for you this may mean that you have to travel a bit to Capetown or one of the other bigger cities, or educate your doctor, print info from this site and take it with you.

Good luck both of you.

Title: Re: Hi I'm new
Post by Rosybabe on Sep 18^th, 2007, 8:17pm

HI Loola!!

Welcome HOME!!

First of all, THANK YOU for being a great supporter for your husband! :-*

now...go get your Hubby here and make him sign up OK?

Please check out O.U.C.H. for more information about CH:
http://www.ouch-us.org/index.shtml

Stay with us and let us know how you guys are doing.

Wishing you lots and lots of pain free time!!

Rosy.

Title: Re: Hi I'm new
Post by BarbaraD on Sep 20^th, 2007, 8:18am

Finding the right doctor is a great first. Red Bull and O2 are the first line of defense in treating CH (for most of us -- nothing works on ALL of us).

Getting a diagnosis is your first priority - then you go to the next step. Rule out other things and then start working on getting some relief (the Red Bull is better than the OTC stuff - those can cause rebound headaches and just worsen the headaches).

Black coffee, hot/cold showers, ice packs, and exercise work to abort the headaches for some. Until you can see a doc, he might try these.

I'm with the others -- get him to sign on this website and find out he's not alone with this malady. Sometimes the "isolation" of CH is awful even with a great supporter. One thing about this place -- most of us have been right where he is now and when we say, "I understand" you can bet we DO.

Hugs BD

Title: Re: Hi I'm new
Post by clusterwife on Sep 20^th, 2007, 12:29pm

I agree with Barbara, have him read this info for himself. There are so many willing to help him, he'd be so happy to talk to another person. I hope you can get as much info so when you do go to the doctor, you will know what to ask for. Good luck, Leah.