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Topic: Newbie from South Carolina (Read 370 times) |
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JArnold
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Newbie from South Carolina
« on: May 18th, 2007, 5:08pm » |
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Hi Guys,
My name is Jason from upstate South Carolina and I have been recently diagnosed with clusters. I had my first cycle in mid February of this year. Man those things hurt! I had a brief remission period of about 9 days and then the headaches came back. I guess I am lucky. My headaches were only coming once every other day (between 3 and 4 am). The ER prescribed prednisone to break the cycle and it seemed to work. I am currently having a daily 24/7 headache behind my right eye. I've had this since February. About a 3-4 on the Kip scale. Are these "Shadows"? I have not had any intense attacks yet but the daily ones are getting a little worse as time goes by. I had an occipital nerve block (without any success) a couple of weeks ago. I have a lot of soreness and pain in the back right side of my neck. MRI and CAT scans appeared normal. I thought I had a brain tumor with my first attack. My neuro currently has me taking a beta-blocker, aspirin, lexapro, and zanaflex daily. I also have the imitrex injector but have not had to use it yet.
My attacks have all been on the right side of my head behind the eye. The hot poker description is right on.
I can't be still during an attack and end up pacing the halls and hitting my head against the arm of the couch. Scares my wife pretty bad. I have tried heat and ice but neither seem to make a difference. My attacks usually last between 2 and 3 hours. My eye dialates, eyelid droops, and my nose and eye run on the right side. I've been doing a lot of research since Feb and you guys have already answered a lot of my questions.
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Annette
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Re: Newbie from South Carolina
« Reply #1 on: May 18th, 2007, 5:49pm » |
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Hello and welcome,
Sorry you are here with CH but you are home now amongst people who understands and have a lot of practical experience.
You didnt mention oxygen. Have you been prescribed oxygen at high flow rate and with a non rebreather mask by your doctor? If not please ask for it and give it a go, its a very effective abortive med for many of CHers here.
Take care and painfree wishes to you.
Annette
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ClusterChuck
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Re: Newbie from South Carolina
« Reply #2 on: May 18th, 2007, 8:37pm » |
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Hi Jason, neighbor!
I am in eastern NC ...
Sorry to have to welcome you, but it sure sounds like clusters! I am SO glad you got diagnosed so early!
You said you tried heat and ice, and it didn't do anything. Try it again, in a different part of your head, neck. The results are different for each of us. I find some satisfaction by using the infamous bag of frozen peas, on the back of my head, just above the hairline. Others use it in front on the forehead, or on the side, just above the ear, or any other place. Be aware, that it most likely won't abort a hit, just tone it down some.
As Annette says, oxygen OXYGEN OXYGEN!!! It is one of the most effective abortive, that is cheapest, and with the least side effects. With the imitrex, you wait for a bad hit. With oxygen, use it on EVERY hit. Many of us swear by it. I sure do!
Anyhow, glad you found us, and ask any questions you may have.
ALSO, why not join us at our convention in July? It is not far away, this year, as it is in Richmond VA. There is nothing like meeting other clusterheads, especially a room full of them! (Even if most of them ARE sick and demented.) (I am the only sane one here. The others are all nucking futs!)
Chuck, your neighbor to the north.
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Bob_Johnson
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Re: Newbie from South Carolina
« Reply #3 on: May 19th, 2007, 9:13am » |
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If you are in the larger Charlotte region you have access to several speciality medical groups between NC & SC.
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/physicians/ 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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Good reading to start on your journey:
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.
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Guiseppi
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Re: Newbie from South Carolina
« Reply #4 on: May 19th, 2007, 1:17pm » |
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A broken record I know but a strong vote for oxygen. coming up on 30 years of battling this thing and it's still my first line abortive. What you need to know:
A high flow rate, up to 15 lpm using a non re breather mask. It has to be pure 02 you inhale with no outside air or it doesn't work well. You have to start it at the first hint of a CH. If it's gonna work for me it aborts in about 8 minutes. Hope you're finding relief, glad you found us!
Guiseppi
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MR_FLOOR
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Re: Newbie from South Carolina
« Reply #5 on: May 19th, 2007, 9:14pm » |
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Hey j arnald,
Try when your using an Ice pack put it on your pillow get your pillow good and cold then using the cold pillow.while your using the cold pillow have the ice pack under your pillow then when the pillow warms up flip the pillow then repeat.I noticed the ice is alittle to cold for me so I do that .Stay pain free and Prosper.
Dave
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