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        Cluster Headache Help and Support >> Getting to Know Ya >> New to cluster headaches
        
(Message started by: TeeJay on May 13^th, 2008, 11:10pm)

Title: New to cluster headaches
Post by TeeJay on May 13^th, 2008, 11:10pm

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

Title: Re: New to cluster headaches
Post by mezza on May 13^th, 2008, 11:21pm

Hi teejay

sorry you are suffering so much- i can relate to these episodes affecting family and quality of life-

look to the left at the ouch website key and follow that link to see if there are any doctors/neurologists in your area that are recommended. I followed the suggestion listed and thats how i found my current doctor- Although the area that i live in is not very rural- i still drive about an hour to see this guy

In the meantime- at first sign of hit, drink a red bull, that seems to help alot of us. Some people find that to avoid the night hits they take between 3-9 mg of melatonin at night- allows them to sleep thru the night w/o getting a hit

Many others i am sure will be along to give advice and encouragement.

kelly

Title: Re: New to cluster headaches
Post by Superdave on May 13^th, 2008, 11:40pm

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)

Title: Re: New to cluster headaches
Post by Skyhawk5 on May 13^th, 2008, 11:51pm

Hi Teejay and welcome to CH.com,

Have you taken the "cluster quiz" on the left of this screen? It can help you decide if this is what you really have.

The best advice for this condition comes from right here by others more talkative than me, and a good Dr., in that order. I hope you don't have CH but if you do you're at the right place at the right time. Good Luck!!

Title: Re: New to cluster headaches
Post by Skyhawk5 on May 14^th, 2008, 1:05am

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.

Title: Re: New to cluster headaches
Post by TeeJay on May 14^th, 2008, 7:06am

MY head seems to always be sore, it starts in the back on my neck ( near where a tee shirt would rest on your neck). It runs straight on my head a stops in behind my left eye. I call this my dull headache cause I can function. Then about three to four times a day. usually after lunch time. The spot behind my eye will have the sharps pain I know shot through It will last about 15-25 mins. During this I cant stand anything not to sit down cant lie down it even hurts to breathe. I can put pressure on the back of my neck doesnt stop the pain but helps relax me to get through this. That is the key to helping for me is to relax. I have a high tolerant to pain usually. And I hate to take Meds. I do take meds for this but I really dont think they help. I will be trying the water Idea.

Title: Re: New to cluster headaches
Post by chefjohn on May 14^th, 2008, 7:15am

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

Title: Re: New to cluster headaches
Post by barry_sword on May 14^th, 2008, 7:23am

Hi TeeJay and welcome, you are not alone anymore with your pain. This family steps up to the plate when it comes to helping others.

Have you talked to your Doc about o2? 100% o2 at 15 LPM with a non-rebreather mask. Get on it at the very first sign of an oncoming hit. I can stop mine within 4 to 7 minutes if I catch it in time before it ramps up to far.

I also take 480mg Verapamil daily as my preventive, but this will have to be between you and your Doc, we are not Doctors but can offer only advise and support.

Read all the stuff to your left and print off the info on the o2 and take to your Doc. Hope this helps you in some way.

Nice to meet you, Barry :)

Title: Re: New to cluster headaches
Post by Bob_Johnson on May 14^th, 2008, 7:47am

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

5. http://www.headaches.org/ 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.
===================

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:

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: New to cluster headaches
Post by tnpruby on May 20^th, 2008, 9:34pm

Hey there TeeJAY

I am a 37 year old female and was diagnosed 11 years ago with CH, like many here,Before diagnosis I too went to ER many times scared out of my witts, My PC gave me a ref. to neuro and he did tests and diagnosed me. When ever he said CH , I just about jumped over his desk and said OH NO SIR WITH ALL DUE RESPECT THIS IS NO HEADACHE, He smiled then started explaining and writing scripts. I also got script for 02 which many of us here consider a blessing and absolutely have to have it during a series. There are many ways to help you get some relief, I personally use Verapamil 3x day, have predisone which is helping and take melatonin , up to 9 to 12 mg a night . I always have O2 , I call day before for certain delivery. My family has hard time trying to understand, my husband mostly. It drives me mad sometimes. Honestly the only ones who can relate is a CH SUFFERER , believe it. Thats why this site exists because we need each other , help one another and support. Ask family members to log on and just read. I have , some members have and some have not. I know I am blessed to have found my family here. We are here for you, so post away , we understand and are here , Let us know how you are doing...
WISHING YOU PFDA

Sincerely,
Ruby :)

Title: Re: New to cluster headaches
Post by TeeJay on May 22^nd, 2008, 10:16pm

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.

Title: Re: New to cluster headaches
Post by DennisM1045 on May 22^nd, 2008, 10:33pm

Hi TeeJay,

I'm glad you are getting hooked up with what you need. However your arsenal is still missing Oxygen. Don't miss out on what is the most consistent and effective relief for a lot of us. Me included.

-Dennis-

Title: Re: New to cluster headaches
Post by TeeJay on May 22^nd, 2008, 10:53pm

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