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itsmiles
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two treatments to consider
« on: Jan 21st, 2005, 11:07pm » |
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I am fourth year med student who diagnosed my headaches myself after 15 years of misdiagnosis and suffering, i was told i had sinus headaches because they were seasonal believe it or not (I think the pain should have given it away, but most docs don't understand pain)......
a treatment for prevention I used which was very successful for many years in stopping episodes after a few days were kenalog injections once or twice a season, these are used in sinus patients.....kenalog is a long acting steroid shown to be 8 times stronger than prednisone....i actually used prednisone regimens a couple of times and it did nothing, i don't know why neurologists aren't using kenalog.
second i had dicovered that sleep apnea, usually in chronic sufferers( not myself) could be the primary reason for the headaches. I suggest any chronc sufferer to get a sleep study and use apnea treatment, there have been chronic patients who have not responded to anything for years that responded 100% to apnea treatment which is bipap oxygen treatment every night (not the high flow treatments that many cluster patients use to abort each individual headache)
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Marc
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Re: two treatments to consider
« Reply #1 on: Jan 22nd, 2005, 1:23am » |
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Steroid treatments for Clusters is well known to be effective - Kenalog sounds interesting - good to hear that it works so well for you.
Sleep apnea has also been discussed here for years and many have had sleep studies. In fact, apnea has been the subject of considerable debate around here. Some will argue that a mechanism behind Clusters could possibly trigger apnea - the old chicken vs. egg thing.
But..... I have yet to hear of a real Clusterhead who was helped by BiPAP (VPAP) or CPAP. Can you give us more information about these folks who had 100% response?
This would be new information to me!
Thanks in advance,
Marc
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Gator
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Re: two treatments to consider
« Reply #2 on: Jan 22nd, 2005, 2:59am » |
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Welcome to the website. Sucks that you had a reason to come looking, but glad that you found us.
There is tons of good info in the links to the left. Best way to get good treatment is to know more than the docs, which isn't hard.
I've heard from several people that said the machines used in treating sleep apnea helped with their night time attacks, but did nothing for their daytime ones. Makes sense. I've also heard from some that they were of no help at all. As usual with this beast, what works for one doesn't necessarily work for all.
The use of steroids in general for ch is common, but so far I've only seen this in the form of a taper. I've been trying to find info on using Kenalog for CH. Pretty much coming up dry. I did find a post from one person in the UK that was using kenalog, but he didn't get real specific. You'll have to tell us more about this.
I'd be interested in hearing more about what your specific symptoms are and what meds you have tried to treat your attacks and what you are using now in the treatments
Again, welcome to the funny farm.
Gator
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nani
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Re: two treatments to consider
« Reply #3 on: Jan 22nd, 2005, 12:04pm » |
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Welcome itsmiles. Can you tell me more about this, please. I already have a c-pap without oxygen. Right now the mask I use is a trigger for nighttime hits (which I don't normally get) so I'm waiting on a canula. (actually, I just have to get my lazy ass to the supply place to pick it up) I'm very interested in hearing about this. Thanks.
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Bob_Johnson
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Re: two treatments to consider
« Reply #4 on: Jan 22nd, 2005, 12:08pm » |
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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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itsmiles
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Re: two treatments to consider
« Reply #5 on: Jan 22nd, 2005, 10:47pm » |
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my headaches started when I was 18, i am now 35, they got progressively worse for about 6-7 years. They occur in the fall and spring, which is why docs thought it was sinus headaches. I would get them all day and night eventually and my longest cycle lasted almost three months. (My nights are usually much worse, and over time I discovered i had to sleep sitting up in order to lessen the severity and frequency of the headaches to a degree. my triggers are allergens like dust and i think mold, and breezes from a/c or fans for some reason.... my pain is located over my right eye) I wasn't sleeping at all and could barely work at that point. during that time i was in pursuit of a doctor who could inject me with steroids because an old retired doctor broke my cycle with a shot years before. remember until i was 35 doctors were treating me for an allergic sinus headache. I went to doctor after doctor, the last one was an allergist who i saw once a week who was the worst yet, he was giving allergy tests and over the counter antihistamines while I was in so much pain right in front of him that i couldn't speak..........all i wanted was steroids because they worked but i didn't know why......he and others didn't want to give them to me because they were bad for me!......imagine a doctor watching a patient's life going down the tubes and recommending nasal sprays.....that's when i found an ent who asked me "what has worked before", he gave me a shot of kenalog and a 2-3 month cycle stopped......it is safe to say that the allergist got a long letter about how he should learn to listen to his patients........since then I am just finishing med school where i figured out the real diagnosis. My ent had the wrong diagnosis but more importantly listened to me, the kenalog injections ( i think 40 mg) changed my life. If i got them when the twinge of the season came on or i had one cluster headache, it would almost always break the cycle within 24-48 hours. this worked for about 8 years, as i mentioned before prednisone didn't seem to work the couple of times i tried it......it was this past fall where no steroids worked and i looked for a new diagnosis, i hadn't slept for a week at one point. I tried oxygen for the first time and it aborted my headache ( a typical 10 out of 10 suicidal headache). That was the first time in about 15 years where i actually stopped a headache, unreal..... so oxygen works 80% at this point and imetrex nasal worked the three times i used it.
so that is my story, try kenalog, I think it works because it give the nerves one quick powerful kick and shuts the cycle off......it is given intramuscular, comes on full force in about 24 hours and remains full force for about two weeks and naturally tapers for another two weeks ( you can get a second shot if necessary two weeks after the first)...one thing i learned in med school is that medicine is common sense, but doctors don't usually have it or use it, they are scripted on how to treat and never go outside the script, patients know there body's the best and what works....i recommend anybody who had been unsuccessful to try everything out there unless it is more harmful than living with clusters, whether your doctor agrees or not, seek out treatment, i am combining treatment from two different doctors this spring when it comes on, hoping i have figured out my correct regimen
about bipap and cpap, you should have a mask covering your nose, not a nasal cannula, the purpose is to provide enough pressure to guaraantee adequate oxygenation. My guess as to why it could be valuable coincides with why oxygen can be abortive.........oxygen causes vasoconstriction and headache relief, thus lack of oxygen must cause wasodilatation and thus pain......bipap keeps oxygen levels where they belong... i learned about the use of bipap from a neurologist who treated chronic sufferers.....one particular patient was on verapamil, steroids, and imitrex with minimal daily relief and bipap took the headaches away, thus this patients issue was adequate oxygenation during sleep time..........whether it is the chicken before the egg should not matter........if apnea is causing the headaches, than bipap would fix the cause....if the the episodic cluster is causing an apnea issue which results in the headaches, bipap would also work.......obviously, like any thing this will work in only certain patients, the problem with clusters (which we alll know) is everyone has to figure out what works if they can........for instance, if a doctor sent you for a sleep study and it came out that you did not have sleep apnea, this does not mean you should not try bipap if you have tried everything else.....bipap is harmless, give it a shot for a little while, every patient should try everything they feel is safe regardless of the doctors predictions...when it comes to clusters, the patient knows best, they have no choice to know best....
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