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drkern
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My hx and many questions
« on: Sep 25th, 2006, 10:51pm » |
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My names is Dan. I guess that is always the best place to start. I have had clusters constantly and almost daily for two years now. It affects my job, my family, and my hobbies. Reflected light or bright sunlight seems to be one instigator, which I was told can happen. Stress and poor sleeping patterns, I was told, could also be triggers. It has helped decrease the frequency of the CCHs (chronic cluster headaches) if I sleep during the say and work at night, which is okay since both my wife and I have home-based businesses that do not require daylight hours be kept.
My headaches come on abruptly and are severe, always behind the right eye and in the frontoparietal area, sometimes into the right maxillary area and right ear. There is then residual pain for up to hours with the possibility of more sharp pains. I have noticed no single thing to set them off other than reflective light, bright sunlight (direct), and lightening or strobe flashes. The pains do happen mostly at night while I am up, but my wife says she has heard me cry out or moan in pain during my sleep and that I often have a hand over my right eye or frontal area.
After many therapies, Depakote seems to decrease the duration and intensity of the residual pains but not the severe pains. In fact, the severe pain has become more severe over the past three months, if that is possible.
My doctors do not know much about these, but are willing to research them as well as try things I ask or things they learn.
My questions are:
This affects my job sometimes in that I cannot work (or do anything) for periods of days. Can one get disability, even temporary, for this? Is there anyone out there on disability for this?
Has anyone found anything that works for the sharp pains since the Depakote seems to work on the residual pain?
Finally, will this last forever. Mind you, they keep telling me I have the chronic type, and when my wife, God bless her, tells the doctor about my "good" periods, she describes them always in hours, not days. Please let me know.
Thank you very much,
Dan
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Kevin_M
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Re: My hx and many questions
« Reply #1 on: Sep 25th, 2006, 10:58pm » |
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on Sep 25th, 2006, 10:51pm, drkern wrote:| After many therapies, Depakote seems to decrease the duration and intensity of the residual pains but not the severe pains. |
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Have you tried Imitrex, oxygen, or any preventatives like verapamil?
Quote:| My doctors do not know much about these, but are willing to research them as well as try things I ask or things they learn. |
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Have you been referred to a neurologist that specializes in headaches?
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drkern
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Re: My hx and many questions
« Reply #2 on: Sep 25th, 2006, 11:14pm » |
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Had allergic reaction to imitrex. Oxygen did not work in the emergency room. The first neurologist I was sent to said it was all just "in my head" (no pun intended I hope) and that I just needed to "have sex, go out to restaurants, do things, and enjoy life." He had no clue that I did those things and the headaches were keeping me from doing them. He did not tests, not even the "follow my finger" or shine a light in my eyes. He just interviewed me and came up with that answer. It was quite insulting to me. He was a "headache specialist," according to the local credentialists.
I have also tried Relpax, Maxalt, and several other abortive drugs, as well as multiple calcium channel blockers and others. I am currently on atenolol.
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BB
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Re: My hx and many questions
« Reply #3 on: Sep 25th, 2006, 11:18pm » |
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Hi
The most important thing is to get the diagnosis right. You said your doctor doesnt know much about CH so please dont mind me asking but who diagnosed you with chronic cluster?
While waiting for confirmation of your headaches, its safe to try things like redbull, oxygen, melatonin and kudzu or taurine.
Plus your doctor should give you Imitrex or Zomig to try to see how well they work. If they work well, you shouldnt have the residual pain for hours. And preventives such as verapamil and lithium and sansert are worth looking at also.
But first make sure please that you have the correct diagnosis, there are other headaches that are similar to cluster such as hemicrania continua, paroxysmal hemicrania etc and the treatments for them are quite different.
Best of luck and painfree wishes to you.
Annette
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TxBasslady
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Re: My hx and many questions
« Reply #4 on: Sep 25th, 2006, 11:19pm » |
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Hi Dan,
It's good that you have a doc willing to learn about CH.
There's lots of info located in the links to the left of this page.
02 works for alot of us. You need a non-rebreather mask and a regulator that'll deliver 12-15 lpm. Check out the "oxygen info" link.
Feel free to print out any info and take it with you when you see your doc.
CH is manageable....and there's plenty of meds that'll help. Sorry, but I can't answer your question as to whether CH will last forever for you. At this time there's no known cure.
Let us know how you're doing...and please ask any other questions you might have.
Jean
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Mr. Happy
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Re: My hx and many questions
« Reply #5 on: Sep 25th, 2006, 11:47pm » |
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on Sep 25th, 2006, 11:14pm, drkern wrote:| Had allergic reaction to imitrex. |
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Zyprexa. Talk to Eric or Bob.
The rest of your stuff is out of my ball park. Then again, so is Zyprexa.
Talk to Eric or Bob.
Hap
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Linda_Howell
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Re: My hx and many questions
« Reply #6 on: Sep 25th, 2006, 11:49pm » |
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Quote:| neurologist I was sent to said it was all just "in my head" (no pun intended I hope) and that I just needed to "have sex, go out to restaurants, do things, and enjoy life." |
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Honey... and I mean that in no deferance.........
"get thee to another doctor"
sheesh.....mumbling to myself now....crazy-ass drs. stupid asses, mind-numbing diagnosis, and idiotic educated(?????? ) nimbeciles.
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Jobette
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Re: My hx and many questions
« Reply #7 on: Sep 25th, 2006, 11:54pm » |
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Dan, I tried the sex thing and it really didn't work, but I may not have been doing it right.  , but don't you just love it when they say that it is in your head. Please don't stop until you find the right doctor, because these thing can be somewhat managed with the proper meds. I refuse to believe that we have to be labeled disabled. O2 works for the most, I am not saying that it stops all the pain, but it does help more than anything that I have tried, with less side affects. Good Luck and don't give up!!! 
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unsolved1
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Re: My hx and many questions
« Reply #8 on: Sep 26th, 2006, 12:14am » |
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Yes, you can get disability for chronic cluster headache with a diagnosis & a little paperwork from a neuro.
Hopefully you won't have to resort to that though 
UNsolved
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drkern
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Re: My hx and many questions
« Reply #9 on: Sep 26th, 2006, 12:34am » |
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Thanks for the helpful advice so far every one who has commented.
It's finally good to know I'm not alone in this (not that I wish this on anyone).
I'm self-employed and self-pay, so my doc has consulted with some neurologists over the phone to save me some cash and has given me lots of samples. I can definitely afford the meds, the scans (all negative), and the consults, but he does try to help me out with the costs, which is good.
Doxepin was a med that worked for a while, but I think it worked by keeping me knocked out 15 hours a day.
One of the neurologists did diagnose them as the chronic type because I always have some sensation of discomfort or pain in the area where I get the cluster attacks. The Depakote seems to help make that pain a tremendous amount less, almost unnoticeable.
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Bob_Johnson
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Re: My hx and many questions
« Reply #10 on: Sep 26th, 2006, 7:15am » |
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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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chopmyheadoff
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Re: My hx and many questions
« Reply #11 on: Sep 26th, 2006, 8:54am » |
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hiya mate - sorry your in pain at the moment.
im a chronic too and lived with these bastards daily for 7 years until i found a top neurologist who gave me VERAPAMIL as a preventative.
I am now 3 months pain free and i cant tell you how good it feels.
VERAPAMIL works for about 80% of people who try it - it makes your blood boil when a doctor is incompetant doesnt it ??
i was told i was just stressed and not to worry about it !
NOT TO WORRY ABOUT IT
ID LIKE TO SEE THEM SAY THAT IF THEY FELT THE PAIN OF ONE OF THESE SUCKERS
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Guiseppi
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Re: My hx and many questions
« Reply #13 on: Sep 26th, 2006, 9:46am » |
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One warning about the oxygen, it won't reverse a headache once it has settled in. Oxygen will stop it from starting, but has to be started at a high flow, up to 15 lpm, with a non re breather mask, as soon as you get the droopy eyed, running nose, my head is tingling hint that a head ache is starting.
Most people who go to the ER for oxygen get no relief cuz the headache has already settled in to the ass kicking damn that hurts mode, and while the oxygen will stop the progress of the headache, it won't reverse it.
I am episodic, meaning I get months off between my attacks, when on cycle I use 1200 mg of lithium a day which sounds like a lot but allows me to work and live normally, with few headaches. Oxygen and imitrex with occasional cafergot beats back the ones that cut thru the lithium. Good luck on diagnosis and as Linda said, get a different doctor this one DOES NOT KNOW CH!!!!! Good luck to you.
Guiseppi
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clusterwife
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Re: My hx and many questions
« Reply #14 on: Sep 27th, 2006, 2:18pm » |
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Depending on your job, most do have disability clauses and if you live in the states, you might qualify for SS. My hubby was told he'd grow out of the headaches, still waiting.
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