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        Cluster Headache Help and Support >> Getting to Know Ya >> A lot of questions
        
(Message started by: 5Almigos on Feb 10^th, 2008, 1:27pm)

Title: A lot of questions
Post by 5Almigos on Feb 10^th, 2008, 1:27pm

Hi there,

I guess, I could have searched for answers here, but my vision is getting blurry and my ears are humming, I don't have much time.

I'm 39, mom of 3, married and have some chronic conditions besides CCH. Lyme disease, Chronic Fatigue and CRS (can't remember sh*t) disease, to mention a few.
I've had CCH for 18 months without a break with an average of 3 attacks per day. Food triggers attacks and I'm eliminating triggers at the moment.

1. I tried to wean myself off coffee, but of course, that made the HA worse. I'm drinking a lot of strong coffee now, but that leaves me very jittery and seems to only delay the attacks, has anyone good suggestions?

2.Does the coffee have to be hot? I oftentimes wake up with a full blown attack and can't really get up to brew espresso. I thought about taking some cold espresso to bed (yuck), but don't know if it would tame the beast or not.

3. I'm losing weight with this and my left side has tremors while the pain is on the right. Is that common?

4. How do you travel or go shopping? I'll get a script for O2 tomorrow and go on Melatonin on Tuesday, but I dread trailing a tank of O2 with me at Target or so.

5. I've been on Phynotoin (Dilantin) for 18 months. It poorly controls attacks. It is a calcium channel blocker. Why is Verapamil so much more effective? I haven't tried it, yet.
I tried Stephania root instead of Dilantin, but gave up after one day. The attacks almost killed me.

6. I am disabled with this condition. How do you live? I can't work or take care of my kids. Without the help of my husband, I'd be locked up in a psych ward.

7. I received an HSI newsloetter a while back, suggesting, to take a Q-tip, put Anbesol on it and stick it up your nose as far as possible, to reach the nerve endings and numb pain that way. I don't tolerate Imitrex, but after reading the Lidocaine suggestions here, the Q-tip almost makes sense. I haven't tried it and am scared of trying, but whatever works, right?

8. I have a script for Fioricet/ Esgic. After a Vicodin dependency, I really don't want to try painkillers anymore, but if it would make at least the bedtime attack more bearable, I'd try it. Has anyone positive experiences with it? So far, painkillers did absolutely nothing for me, but I didn;t know that, until I tried to live without them.

9. How about green tea, caffein chocolate or Noni juice. They all produce serotonin and influence Melatonin output that way. Would that be sufficient? Coffee really makes me nervous.

10. Why does coffein make us very tired and the normal person can't sleep after coffein consumption?

Sorry for so many questions, but my neurologist doesn't have any answers for me.

Thanks for reading and have a great Sunday,

Sonja

Title: Re: A lot of questions
Post by Bob_Johnson on Feb 10^th, 2008, 1:45pm

Right off the bat: if you have Chronic CH and your doc is unsure, time for a new doc, if at possible.

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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The first title is well worth the investment.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 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.
================
Print and give to the doc; use it as a tool to discuss treatment options. Note: Lithium is much recommended for Chronic CH.

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)
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Coffee and OTC stuff isn't going to work given the complexity of your situation. Really need a talented doc.

O2 not noted as helpful for Chronic, nor are pain meds. Why Verap is best is ??? but several others in the class have been tried without success. Use the Rozen article as you rmain list of tools--it represents the best list of current therapies.
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This is plenty to get started! Do stay in touch. This group will open the doors to you and give much support and assistance.
As you feel better, explore the button on the left and all the internal links.

Title: Re: A lot of questions
Post by Guiseppi on Feb 10^th, 2008, 10:48pm

Bob has given you some great reading to do. You need to find a doc who either understands CH, or will listen to what you bring them. You need to attack this problem with a 2 pronged approach:

1: A preventative: This is a medication you take to reduce the frequency, and the intensity of the attack. I use lithium, verapamil is one of the more common, there are many to read about in the link Bob gave you.

2 An abortive: A headache starts, now what??? Oxygen should be your first line abortive. After 30 years of going toe to toe with the beast, oxygen is still my first line abortive. I can be completely pain free in as little as 6 minutes breathing pure oxygen. For now, try chugging an energy drink at the onset of a headache. Monster, Rock Star, any which contain the combo of Caffeine and Taurine. Many can stop an attack using just that.

Your first order of business is to fins a good doctor. Until you do that you are just spinning your wheels and you are going to be hurting a lot!! We hate that around here! ;)

Welcome to your new second home. we will do everything we can for you.

Guiseppi

Title: Re: A lot of questions
Post by 5Almigos on Feb 11^th, 2008, 12:50pm

Thank you, guys.
My backlog on unread books is unheard of, but I will do the reading and check that book out.
Lyme disease is a similar situation: Until you find a good doc. you are lost and have to do a lot of research on your own to get a foot in the door. I didn't think. CH was so under recognized and that I would have to study so much again, but I stick with Nike and Lance Armstrong:

JUST DO IT and LIVE STRONG1

I'm glad, I found this forum. Due to a sulphur intolerance, Taurin is not an option for me, but I'll keep chugging Espressos and get Oxygen. 6 min. sounds like a piece of cake compared to 60 minutes of living hell.

Tank you so very much,

Sonja