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Topic: Hello.... (Read 277 times) |
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wildewolfe
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I thought I would introduce myself and the stuff I've gone through. I'm not sure if they're cluster headaches or something else... originally they were diagnosed as "Histimine Cluster Headaches" but I understand that's not a valid thing anymore.
In anycase, this all started for me back in 1987. I was stationed in Louisianna in the military and I developed some severe allergies. Half my face (it was like a line was drawn down the centerline) would swell up. Right eye would swell shut, the right side of my lips would swell etc. I could go to work in the morning perfectly normal and 30 mins after getting there they would be sending me on sickcall cause my right eye looked like someone hit me.
This continued on for 6 months or so. Then I came back home to denver on leave and the first of the headaches hit. It was like someone was taking an icepick and shoving it through my skull... just slightly to right of centerline. The episodes themselves were brief. By the time I had reacted to the pain it was over. But the episodes hit ever 10 to 30 seconds too. The army docs treated me with ergotomine (which did squat) and the headache continued like that for 21 days then just went away. The pain caused by the headache was simply blindingly bad. Much later (199 I blew out a disc in my neck and it collapsed on the root nerve. The pain was remarkably simular in quality and intensity to the pain caused by the blown disc. Nothing has ever come close to the headaches and disc in sheer levels of pain for me.
The swelling attacks (they never did find out what I was allergic too after 2 full allergy tests) continued until I left the military (and Louisianna) and moved back to Denver. The headaches weren't an every attack type of thing, but I never got a headache without having the swelling first. They diagnosed the swelling as "Idiopathic angiodema" which basically just meant they didn't have a clue.
Once I got back to Denver, the allergy swelling attacks faded for the most part and the headaches went away for several years. Then I was blessed by catching Chickenpox as an adult. 5 days into that joyous occasion the headache fairie brought back the icepick and for the next 17 days I wanted more than anything to just die. I finally got seen by a neurologist and he perscribed depakote for it and it again went away for several years.
I have had several relapses of the headache since then each treated with depakote but none has lasted like they used to (thank the gods) they average 3 to 5 days now, but the last couple of years has started to ramp up with a lovely combination of tension headaches (caused by issues with the spinal surgeries), sinus headaches, actual migraines and more and more often the icepicks. Haven't 2 or 3 of those at once has been a diagnostic nightmare for my family doctor and a total nightmare for me.
I can feel the icepick "tickling" for lack of better word. It's always the exact same spot, and when they hit just touching the hair around the spot will trigger a stab (though pressing hard will not), I don't really want to continue dealing with these and I'm would love any suggestions any might have.
Like I said above, I am not sure they are by definition cluster headaches anymore, but I also don't know where else to go to talk about them where folks won't just think I'm nuts either.
Thanks in advance...
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Broken
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Re: Hello....
« Reply #1 on: Dec 15th, 2006, 3:38pm » |
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Welcome my friend. Sorry you feel this beast's fury but I'm glad you have found us. There is nothing worse in the world than knowing you're in pain but not knowing what it is and why it's happening to you. There is not reason why really but if you are a Clusterhead (short for Cluster headache sufferers) then welcome home.
Broken
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Holding on his hand, when every second of everyday I feel like letting go.
You hurt me before.Never again.I won't give up and I sure as h*ll won't let you win!
My Poems and Stories at:http://www.quizilla.com/users/hiddeninsight/stuff/
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wildewolfe
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Re: Hello....
« Reply #2 on: Dec 15th, 2006, 4:01pm » |
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Thank you...
I am not sure they are CH... but I am near the end of my tolerance for them. The only thing keeping me going is my kidlet.
I have found that as I have aged my willingness to deal with this level of pain has dropped to almost nothing. I can feel it tickling (is this what y'all call shadows?) now and I am just dreading it.
If it weren't for my daughter, I would cheerfully check out I think before it hits again (sounds cowardly I know).
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Redd
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Re: Hello....
« Reply #3 on: Dec 15th, 2006, 4:17pm » |
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wildewolfe,
there is a cluster headache quiz over on the left, but my best guess, as an expert sufferer, is that you are not a cluster sufferer. Good thing for you. It appears as though you may have a condition quite easily treated with indomethacin. It's hard on the stomach, but works wonders on what I'm guessing is paraxismal hemicrania.
Please have your doctor check into this.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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wildewolfe
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Re: Hello....
« Reply #4 on: Dec 15th, 2006, 4:40pm » |
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on Dec 15th, 2006, 4:17pm, Redd715 wrote:wildewolfe,
there is a cluster headache quiz over on the left, but my best guess, as an expert sufferer, is that you are not a cluster sufferer. Good thing for you. It appears as though you may have a condition quite easily treated with indomethacin. It's hard on the stomach, but works wonders on what I'm guessing is paraxismal hemicrania.
Please have your doctor check into this. |
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The symptoms on that one match about as well as CH... some corespondence but not a real fit. The indomethacin I haven't tried, but I can't anyway since I take ACE inhibitor for high blood pressure (if I read the medication info correctly). The only medication that ever helped it out was the depakote. Narcotic pain killers, Relpax, ergotomine, ibuprofen, don't touch it at all. A shot of demerol can allow me to sleep... if I am tired enough. The stabs just keep coming. I do have "normal" migraines as well, but these aren't those. Sounds like I get to keep looking.... ;( Thanks anyway guys...
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Redd
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Re: Hello....
« Reply #5 on: Dec 15th, 2006, 5:31pm » |
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Each cluster attack ramps up in 5-10 minutes to unbearable pain that will last on average 90 minutes. Some as short as 15-20 minutes sometimes as long as near 3 hours. The stabs you mentioned were quite short by your description. Seconds in duration.
Quote:| By the time I had reacted to the pain it was over. |
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It's still worth talking to the doctor about, as he may switch blood pressure medications to allow you the use of the indomethacin.
Family doctors are great if you already are well informed of your condition and research the most effective treatments. Your best course of action would be to seek out a headache specialist neurologist.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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LeLimey
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Re: Hello....
« Reply #6 on: Dec 15th, 2006, 6:33pm » |
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Wildewolfe there is a condition called Icepick headaches which is very much as you describe as is Sunct. As with Paroxysmal Hemicrania they are both very responsive to Indometacin. as already stated you will probably need another med with this to protect your stomach though but that's a small price if you find your silver bullet!
I would suggest you read a bit about both and if you have any more questions come back - we'll do all we can to help 
Helen
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wildewolfe
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Re: Hello....
« Reply #7 on: Dec 15th, 2006, 11:40pm » |
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I had looked at the icepick headaches before... and as with the cluster and the one listed above there are aspects that match and some that don't.
Another friend directed me to another website today though to look at something called Trigeminal Neuralgia, which is near a 100% fit to the symptoms. A bit unusual at the starting age of 25 and not the most common location (top of head instead of cheek or eye) but still within the potential area.
At least it's a start and thanks to the ex tattling to my family doc, I have an appointment tomorrow so will talk to them.
Again thanks...
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LeLimey
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Re: Hello....
« Reply #8 on: Dec 16th, 2006, 1:30am » |
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This is why it's so important to see a neuro, when you have a selection of symptoms you need an expert diagnosis and bear in mind, like several others here you could have more than one HA type going on which will confuse the issue.
A HA diary logging what happens when will be the most useful tool for diagnosis.
Also bear in mind that with more than 600 HA types there will always be crossovers. You'll get there!
Helen
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Bob_Johnson
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Re: Hello....
« Reply #9 on: Dec 16th, 2006, 11:14am » |
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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/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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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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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)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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