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Topic: Newbie from Ohio (Read 205 times) |
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MorDog
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Newbie from Ohio
« on: Feb 9th, 2005, 9:08pm » |
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I just started my cycle this past Jan. 28th which prompted me to search the net on Cluster headaches and I found this site. I suffer from the episode CH and usually have about 1yr to 1 1/2 yr inbetween cycles. My cycles usually last 1 month. I have alot of the other symptoms such as stabbing eye pain, drooping eye lid, nasal congestion. I had to diagnose my condition to my doctor after I read a small article about CH. I have had the CT scan and MRI but I have never been to a neurologist. I even mentioned it to my doctor during my last cycle in May of 2003 but that was as far as it went. I am going to see my doctor again this Fri. as I am out of Imitrex nasal. Any advise to help me "get the lead out" of my doctors ass on doing something more rather than trying to treat this as just a headache problem?
I also sometimes have what you all refer to as shadowing during the day and at the beging/end of my cycle I think I also get the "Cluster Tic Syndrome". Those numerous quick zingers that last for a second or two. They kind of feel like an electric shock to my right side of my head. It is usually when I know the cycle is winding down.
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| « Last Edit: Feb 9th, 2005, 9:33pm by MorDog » |
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BobG
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Re: Newbie from Ohio
« Reply #1 on: Feb 9th, 2005, 10:20pm » |
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Welcome to the board, MorDog. Between now and Friday you have some reading and printing to do. I suggest you start with the Cluster Quiz button on the left side of your screen. It does sound to me like you have Cluster headaches but try the test anyway.
Under the ‘oxygen info’ button you will learn about using pure O2 as an abortive. Print it. Many doctors don’t or won’t believe in the O2 treatment.
Many people here use Imitrex injectors. They are faster to work than the pills or nasal spray. To save money and save heart pain there is an ‘imitrex tip’ button on the left.
Talk to your doctor about preventative meds such as verapamil.
The quick zingers you mention sound like Chronic Paroxysmal Hemicrania (aka CPH). It is usually responsive to Indomethacin.
I am not a doctor and can not diagnose you. Please see your regular doc.
Now get to reading and printing. You may have to educate your doctor on Friday. Please let us know what happens after you see the doc.
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Stay stressed. Never relax. Never sleep. Ever.
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RichardN
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Re: Newbie from Ohio
« Reply #2 on: Feb 10th, 2005, 2:47am » |
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Ditto to what Bob said.
The biggest problem with getting doctors to prescribe 02 for abortive, is I believe, they just don't have much experience with it. It seems that . . .. Pain = pill/shot, or tests (which granted are necessary to rule out other causes), or (shudder) surgery. But if it works (as it does for many of us), you can kill the beast in minutes and avoid the "dance"
I can deal if I don't have to dance.
Luck with your doc,
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Bob_Johnson
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Re: Newbie from Ohio
« Reply #3 on: Feb 10th, 2005, 6:48am » |
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Many of us have to work with a doc who is not a specialist in headache. The key, since your guy has already shown some readiness to accept info from you, is to feed him MEDICAL literature which he can recognize as an authority.
Print out this long piece. Written by a good headache doc in the Chicago area.
http://www.headachedrugs.com/pdf/HA2005.pdf
Then invest in this book; same author. It is written for docs. First rate information. Share it with your doc after you have read it! (Get it at Amazon.com)
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...."
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Bob Johnson
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sandie99
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Re: Newbie from Ohio
« Reply #4 on: Feb 10th, 2005, 2:50pm » |
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Welcome! 
I am so sorry that you have CH. But the way to fight the beast is to know as much about it as you can. So read EVERYTHING you possibly can about it in here, medical journals, books, etc. As someone who has met lots of neuros, you should be aware that not all of them know as much as about CH as they should. Good luck!
Best wishes & PF days,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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MorDog
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Re: Newbie from Ohio
« Reply #5 on: Feb 10th, 2005, 9:58pm » |
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Thanks all of you. Last night was PF and I felt great today, almost like they were over. But I should know better by now. Just aborted one about 10 mins ago. Atleast maybe I have a chance to sleep through the night again tonight since the CH has come and gone. (Thanks to the imitrex nasal and my last one until the new prescription tomorrow.) I have read alot and printed alot of info. I guess I am ready to see the doc and "educate" him some more. After reading some of what others go through I am not sure I need to persue seeing a neuro. My CH are mostly just once a day, usually after I go to sleep, and only on occassion twice in a day. My cycles have not lasted longer than 4 weeks. Although I know it can change any time it wants. And my remission period has been getting longer after each cycle. Used to be 1 year, then went to 1 year and 6 mos. and the last time was almost 2 years. Also the imitrex nasal seems to be doing the trick as far as aborting them and fairly quickly. Maybe I am just coping better this time around. I know reading these boards has helped.
Sorry for such a long winded post. Just seems like I have alot to say and get off my chest since I know all of you know exactly how I feel. Well, that is all for now guess I will get some rest. Thanks
Mike
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E-Double
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Re: Newbie from Ohio
« Reply #6 on: Feb 10th, 2005, 10:35pm » |
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Welcome Dog!
Read all the info you can!
http://www.brightok.net/~mnjday/chtherapy.pdf
Lucky member of the clucb to have multiple Ha's along with the damn CH...me too
Pain sucks Period!!!
Look up these little buggers.........then go to the doctor!!!
paroxysmal hemicrania
SUNCT
ISH ....Icepick HA
They all are tremendously painful but different then CH ...... the duration is MUCH less.....Kinda like Zaps!!! and tend to be responsive to Inomethacin and other NSAID's in that family
Wishing you a brief cycle!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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MorDog
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Re: Newbie from Ohio
« Reply #7 on: Feb 12th, 2005, 9:58am » |
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Well, the doctors visit went good. For the first time I really felt like we were on the same page. We talked things over and he made sure I had options as far as imitrex injections, Oxygen, etc. and he kind of left it up to me on how bad things were for me. Right now I told him I was satisfied with the nasal spray (imitrex) and he gave me plenty of refills for it. It usually works in 10 minutes or so. I know the injections would be faster but I felt the 10 minutes of pain was manageable for me since most of the time I only have one attack a day. (2 attacks on the worst days but that is not often) I guess the biggest thing is I know if things get worse for me or I feel the nasal doesnt do the trick for me anymore the doc will prescribe something else without me having to convince him of the severity of my condition. I think between all the info on this site/message board and having the doctor on the same page as me and knowing that I can come here and talk has been a great comfort to me with this cycle. It makes it so much more managable. Thanks to all and thanks for the welcome to this board. It means alot.
Mike
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