Hello,  I am TeeJay, 37 year old female.  I am in the 1st cluster and on day18.  I was diagnoised with clusters at the ER and was given  Orphenadrine 100 mg  and Naproxen Sodium 550 mg.  The meds dont help I have the shadows from the time I awake until I fall back to sleep.  I have about 3 to 4 attacks of the the severe pain a day it is on my left side, seems to run up back of neck to the eye.  Family Dr made me feel as if I was faking the pain,  ER Doc was wonderful  and did test to rule out any tumors ect. and said he believed it was clusters.  My questions is I need to find a Doctor to help me.  I live in a very rural area of Kentuckyand not sure what my next step should be. Just know I need help.  This headache is effecting my marriage and life with my children.  My daughter, she is 11,  sits and cries with me cause she is so scared when they hit. ( I know that it isnt the same but anuriums runs in my family had an aunt to die from them) I can sleep they dont seem to interfer with sleeping.  Please if anyone has an idea to help let me know

Hi TeeJay,

Welcome to clusterheadaches.com you’ve come to the right place. There is plenty of help here for you.

You probably don’t know how lucky you are to be diagnosed so soon. It took me 5 years to find out I had Ch.

Spent lots of desperate nights alone wondering what the hell was wrong with me.  It hurts a lot but it won’t kill us.  

It was difficult for me to find a neuro that recognized cluster headache, but don’t worry through this website and the good people hear you’ll find one soon.

You'll soon be hearing a lot about oxygen, It’s a life saver for me and many others here.
Read the oxygen info on the left side of the page It can make this whole CH thing a lot easier to deal with

Superdave 8)

Teejay,   My Mother is from Pikeville area (eastside) KY. Please tell us about your attacks. Help us help you? CH is a rare illness and is not understood by 'most Dr.s. You may have to educate your Dr. after you educate yourself about CH.

If it is Cluster Headaches that you do have then the "normal" headache drugs will be of no help to you.  Have you tried any energy drinks or coffee yet.  You don't want to be crazy about your methods but should be aggressive and proactive in your treatment.  Best of luck to you.  You have plenty of support out here.    John

The ideal response would be to find a good headache doc and get a good diagnosis and treatment plan. At that point, if your local doc is willing to take on the situation, he can act as a link to the specialist, working to make treatment adjustments, etc. It is not unusual for many of us to "teach" our local doc how to care for us. If you have such a doc, you are in a good situation--somone whose ego will allow them to be taught by the patient!
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or  On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  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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While there is an abundance of experience and information here on on the OUCH site (be sure to explore, button left), for someone in your position I'd strongly recommend investing in one of these books. They will give an organized discussion of CH and give you a good foundation for your self-instruction. It's difficult to integrate bits and pieces of information into you thinking without a good foundation on which to build.

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.
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Since your message conveys a lack of final clarity on a diagnosis, it would not be wise to start an active treatment plan without medical guidance. While it's uncommon, a number of disorders can give the appearance of CH and you don't want to mask them by a treatment which may suppress the cluster pain without knowing, for sure, that you do have CH. Hence, my first para. suggestion.
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Finally, a list of current therapies:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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)
 

well just wanted to let everyone know that I have found neuro.  And he is wonderful.  I am now on veraoamil 3 times a day, and floricet and imitrex for pain.  He is schedualing a MRI.  Very hopeful he says he can help.  Have had to two PF days this week so I feel it is helping.  Now just have to keep bp from getting to low.   Have low to normal bp normally.  Family is very supportive so far.  Kids just are scared because they are so young and mom is sick.  Thank you all for the support. I will post again if anything changes but I think I am at end of 1st cluster cause the pain is less frequant.  I know that it is very possible it will come back but loving my pf days.

we did talk about oxygen and he wants to see MRI first.  I will be asking again.

Hey TeeJay,

Cluster headaches are a family disorder.  You got'em but everyone in the family suffers one way or another.  The sooner your husband and daughter understand that your cluster headaches and treatments are really no different than someone with diabetes the better...  They need to be treated.  It's that simple.

Try to get them to read the CH.com board sections on "supporters."  As soon as they realize they can help you, the better everything will be.  What do I mean help?  Simple.  They don't make a big deal when you have an attack, but they're there when you need them.  In fact, my wife can spot one coming before I even feel it.  I usually get a "Get on your oxygen" from her and that is that.

You have a lot of folks here on CH.com that understand very well what you're going through and they are here to help you.  Again, hang in there with the meds and give them a chance to work.  We're all wired differently so what works as a preventative for some of us isn't worth a hoot for the rest of us.  The beast is good at morphing and what you're taking now may not work later.  This is why it's good to have a neurologist that will work with you in developing an effective treatment strategy.

Take care,

V/R, Batch

Please watch taking the Fiorcet, it will cause SUPER DUPER rebound headaches.  It is nothing but pure Excedrin with a sedative in it and CH doesn't like acetaminephin (how the heck do you spell that word?).

I'm glad you found a neurologist!  Verapamil is also working for me (along with Depakote).  For sure get an O2 tank.  15ml/min of pure O2 was the best abortive for me (a god send since my CH's typically lasted 2.5 hours).

I'd also recommend you look at the vitamin regimine.  I found this one posted here in this forum:

1. Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360mg/day, DHA 240 mg/day)

2. Vitamin D3 - 10,000 IU/day

3. Calcium - 500 mg/day (calcium citrate preferred)

4. Magnesium - 400 mg/day (magnesium citrate or magnesium gluconate)

5. Vitamin K - 120 mcg/day

6. Zinc - 10 mg/day