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alrz
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Newbie needs to confirm symptoms
« on: Jul 30th, 2004, 1:09am » |
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Hi, I don't have the time to research through the posts on here, but I have been seeing a neurologist for headaches that keep coming back, and have recently been considering filing a disability claim.
I just found this site tonight, and I wanted to share and also learn from some of you if my neurologist has properly diagnosed my headaches as being cluster.
These are some of my symptoms: I get 5 or more per day, they last usually more than an hour and up to 3 or 3 1/2 hours, (some of my worst have hung on for 4 hours, unless I had 2 back-to-back, my neurologist thought that was unusally long). Usually when I try to lay down and go to sleep they start coming on with an intense pressure building up in my head which immediately turns into pain. I am no longer able to sleep in my bed lying down, I have to sleep sitting up in a chair to get any rest. Sometimes I get them in the daytime while driving (I drive an 18-wheeler). The pain is always on the right side of my face, burning down into the right side of my neck, my right temple feels like "raw meat" when I touch it, which I can't stand to do, and it feels like I have a steel rod shooting out through my right eye, my eye tears and my right nasal passage swells up. I can't get these headaches to go away until my nasal passage clears, then I began to have some relief. I use a steroid nasal spray to help keep my nasal passage open, and am taking verapamil daily and have tried zomig for the pain. This regimine has brought the headaches down to less intense and less frequent but I still get them anywhere from 4-5 a week. Does any of this sound familiar to you all reading my story? I can remember having similar headaches when I was in my late 20's and now I am in my late 50's, and these just started as this intense last fall. In my 20's I thought the headaches then were residuals of a skull fracture that I had sustained from a fall from a building, but why now are they back this intense? Are they hear to stay, and what are my options if I go the disability route? I really hope to hear from someone with a lot of knowldege and experience on this, because this is causing me a lot of anxiety and work loss. I must say that my mri's and ct scans all showed normal and the doctors in the ER initially treated me for chronic sinusitis, but the 5 day prednisone treatment did not help at all.
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judyw
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Re: Newbie needs to confirm symptoms
« Reply #1 on: Jul 30th, 2004, 1:23am » |
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Sorry to say that looks like you are in the right place...The treatment your Neuro is giving is good, but would need to know dosage amount...some don't seem to realize how much higher we need than normal to work...It is impossible to give you all the information you are asking for in one post...Each of us has to find our answers by trial...disability is still very iffy as CH is not considered a viable condition, though some have managed it...you could be having rebound h/a from your meds for them to be so long...Have you tried O2? Check the links to the left for the best information for quicker reading...When was your last episode?
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judyw143
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alrz
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Re: Newbie needs to confirm symptoms
« Reply #2 on: Jul 30th, 2004, 1:36am » |
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Thanks for your reply, I take 240 mg of verapamil (1 tablet a day)...also I forgot to mention he coupled that with 500 mg of naproxen...an antiinflamatory but I also need it for my back pain. I haven't tried the O2 yet, but would like too if it works better than this stuff. My neurologist may not have given me that option because I smoke...Do you have problems sleeping lying down, does lying down make your headaches come on?
As far as my headaches, they came on last August, and were very sporadic, I didn't have but three or so the whole month, none over labor day weekend, and then on the 10th of Sept. (my daughter's b-day) they hit me real hard that night...I tried using ice packs and tried to freeze that side of my face to numb my eye socket, but the headache lasted for about an hour, then when I went to bed that night it came back and has been going on since then, although I am having less occurances now since taking this medicine.
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Bob_Johnson
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Re: Newbie needs to confirm symptoms
« Reply #3 on: Jul 30th, 2004, 8:21am » |
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Your Verap dose is only half to one-third of what most folks find necessary.
Imitrex injection will give you faster relief, especially when you are on the road--and quick action is especially important.
Disability is a premature question. It may require several changes in meds and adjustment in dosing before you find the combination which works for you. In any case, it's hard to imagine that you could make a case based on what you have written so far.
Given you time limitations re. reading/researching, I'd suggest you get either the second or third title (below). The second one would be better for it's written for physicians and you could share it with you doc as a guide to treatment.
HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. 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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Bob Johnson
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floridian
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Re: Newbie needs to confirm symptoms
« Reply #4 on: Jul 30th, 2004, 9:01am » |
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Clusters can be debilitating, but chances are good that you can find treatment and function. The meds you mentioned are good for clusters, but nothing works for everyone. Work with the doctor to experiment with the dosage. If one doesn't work, eventually try another.
The sleep laying down thing may be linked to apnea, which is common among cluster heads. If your breathing is reduced during sleep, oxygen drops and it can trigger a cluster headache. I haven't heard anyone here mention sleeping in a chair to reduce attacks, but I wouldn't be suprised if it helps some people.
A skull injury may have pushed you towards clusters, but there are also genetic and biochemical factors involved. Its fairly common for people to have clusters, experience years of relief, and then have them come back. No one really knows why, but it could be related to the immune system, diet, or just randomness.
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forgetfulnot
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Re: Newbie needs to confirm symptoms
« Reply #5 on: Jul 30th, 2004, 12:32pm » |
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Floridian wrote Quote:I haven't heard anyone here mention sleeping in a chair to reduce attacks, but I wouldn't be suprised if it helps some people.
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I have heard of clusterheads sleeping in recliners and propping up the head of their bed with several 2 x 4s, they seemed to think that kept the night time attacks down.
Also, O2 should not be withheld because they smoke. Just don't smoke while using it.
Lee
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BobG
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Re: Newbie needs to confirm symptoms
« Reply #6 on: Jul 30th, 2004, 3:50pm » |
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Have to agree with Lee.
Sleeping with the head elevated or sleeping in the La-Z-Boy is a very common practice amoung clusterheads. I have spent many dozens of nights in the upright position.
And have to agree with Bob Johnson. Some folks are on 800+mg of verapimil. Some take lithium with the verapimil.
The suggestions about O2 are good. It is safe, non-habit forming and cheap compared to drugs. Ask your doc about an O2 prescription with a non-rebreather mask and a regulator that will deliver 15lpm.
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Stay stressed. Never relax. Never sleep. Ever.
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thomas
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Re: Newbie needs to confirm symptoms
« Reply #7 on: Jul 30th, 2004, 5:27pm » |
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on Jul 30th, 2004, 9:01am, floridian wrote: I haven't heard anyone here mention sleeping in a chair to reduce attacks, but I wouldn't be suprised if it helps some people.
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Jean, Txbasslady has mentioned on the board before.
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Kris_in_SJ
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Re: Newbie needs to confirm symptoms
« Reply #8 on: Jul 30th, 2004, 8:30pm » |
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Hi,
I'm also sorry to say that you're probably in the right place. And the posts so far have been right on.
An increase in your Verapamil (to 480mg/day) might help shorten this cycle, and Prednisone is also helpful to many people. It should be used for only a short period of time and is gradually reduced in dosage - it can often interrupt the HA cycle until the higher doses of Verapamil can start working.
You obviously need a good abortive med - both O2 and Imitrex (injection or nasal spray) work for many people, work quickly, are portable, and would allow you to "keep on truckin!"
I've also found lying flat to be impossible when I'm in the throes of a cycle. In addition to keeping your head elevated, you might try taking 6-9 mg of Melatonin an hour before trying to sleep. It's inexpensive, non-prescription and works well for many of us Clusterheads.
I would urge you not to go the disability route just yet. Work with your doctors to find a combo of things that work for you. The thing about clusters (especially for episodics) is that one day they simply stop (maybe meds ... maybe the cycle ends ... each of us is different). The act of taking disability can stick with you (in an employer's mind) for many, many years.
Keep on your docs to find the right meds and treatments, and don't give up just yet.
Hugs,
Kris
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UN_SOLVED
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Re: Newbie needs to confirm symptoms
« Reply #9 on: Jul 30th, 2004, 8:43pm » |
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on Jul 30th, 2004, 1:23am, judyw wrote:| disability is still very iffy as CH is not considered a viable condition, though some have managed it... |
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You CAN get it if you need it . You would HAVE to be considered "Chronic" ... debilitated for at least the next year.
It takes a doctor that will back it (Neurologist) .
Meet the criteria and they can't turn you down.
Epesodics shouldn't even apply .
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