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Topic: Please Help (Read 481 times) |
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needhelp
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I have been suffering with severe headaches for years now but was just diagnosed with CH's about two years ago. When the doctors fianly figured out that it was clusters they put me on propranolol as a preventitive and they stopped imediately. Well about three months ago they came back worse than they ever have and I am getting five to six headaches a day. The doctor has now put me on neurontin and that has had no effect at all as a preventitive and nothing is fasing them at all once they get cranked up. I am getting very desperate and have no idea what to do next. The pain has gotten so bad that I would rather blow my brains out than hurt like this anymore. Any ideas or help would be greatly appreciated.
Thanks
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ave
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Re: Please Help
« Reply #1 on: Jan 6th, 2004, 2:11pm » |
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Sadly welcome here.
Under the green buttons on the left you can read a lot about medication for clusters. Verapamil is the preventative of choice for many docs, but it takes some time to kick in.
A prednisone taper can bridge that time gap.
For aborting attacks that break through pure oxygen is a godsend for many (button left) and other wise imitrex injections (pills take too long, usually).
For non-medical relief, try this link
http://www.clusterheadaches.org/resources/meds.htm
The OUCH website has lots of info as well.
What youneed ias print out as much info as you can and take the wholeprintout to the doc.
Good luck.
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Paigelle
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Sorry you have had to join us, but you are with a great group here. We help each other anyway we can.
I, too, was on propanol along time ago and it helped prevent my CH. This time around it did nothing. It is all a matter of finding what works for each person. You will notice what works for one person will not help another. Read all you kind find and remember we will listen to you bitch, scream, cry, and also laugh.
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thomas
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Welcome aboard, there's plenty of info to read and a whole lot of shoulders to lean on.
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TxBasslady
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Re: Please Help
« Reply #4 on: Jan 6th, 2004, 10:22pm » |
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Welcome to the board.........
First, be aware that you are not alone! I think that is very important. We have been in the same situation at one time or another.
Second, you will soon discover a whole new family here. Lots of help and advice.....lots of info on what works for some. We are all very different. Not everything works for each of us.
Stay here and continue to post, and let us know how things are going for you. There is usually someone here 24/7. Just know that we are here for you, and will try and help in any way possible.
Read the links to the left......they contain valuable information.
Sending you PF vibes,
Jean
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jflynn
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Re: Please Help
« Reply #5 on: Jan 7th, 2004, 12:18pm » |
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Melatonin should also be researched and considered by you. Pretty darn safe and completely ends the pain for some of us.
I can tell you prednisone and sinus surgery were useless in my case. Lidocaine drops into my nose while inverted work so-so.
That's all I've tried so far since melatonin has been completely effective to date.
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Bob_Johnson
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Re: Please Help
« Reply #6 on: Jan 8th, 2004, 8:55am » |
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The meds you mention are used to prevent attacks but you also need a med to abort an attack. The prevention meds often require adjustment in dosing before you find the effective level and so working with you doc may take a little time.
However, he should also be providing something to quickly abort/stop an attack. Oxygen, imitrex, zyprexa, etc. are effective, generally working to abort an attack in from 10 to 30-minutes.
Agree that there some good info on the left hand buttons which you should print out for your doc. Would also suggest getting one of these books.
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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henzey
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Re: Please Help
« Reply #7 on: Jan 8th, 2004, 2:27pm » |
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This is my first time having clusters during winter...usually have them during spring or fall every 2-3 years. Think that pre-menopausal hormone stuff may be causing it this time since recently had very erratic periodcs. Also is the first time that I had several attacks during daylight hours. So far, Topamax at 25 mg has worked well, have not had to increase to 50 mg yet. But after 3 days am still getting over feeling drowsy. Drinking lots of water since this does have some tendency to cause kidney stones....another major pain. I tried the Melatonin for about 4 days and did not get any noticeable relief from it, but maybe did not try long enough or high enough dosage. Maybe I will try the Melatonin at the start of the next episode.
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5-string
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Re: Please Help
« Reply #8 on: Jan 8th, 2004, 7:03pm » |
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Welcome needhelp,
First off, blowing your brains out is not an option here.
Read all you can stand,over heat your printer and bring it to your neuro. They're are alot of options that work differantly for differant people. You might have to experiment.
..Mark..
Hi Henzey.
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Pinkfloyd
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Re: Please Help
« Reply #9 on: Jan 9th, 2004, 4:45pm » |
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on Jan 6th, 2004, 1:11pm, needhelp wrote:| diagnosed with CH's about two years ago. When the doctors fianly figured out that it was clusters they put me on propranolol as a preventitive and they stopped imediately. Thanks |
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If the propranolol stoped them immediately, they "most likely" aren't (or weren't) clusters, but a related form of headache. How long does the "peak" pain last? How many times per day?
No one asked, but......did they return WHILE you were still on propranolol and you were switched to neurontin?
If not, why didn't your doctor try the propranolol again? Just wondering. Propranolol (inderal) is very effective for the some types of headaches. Not so effective for others.
Neurontin, OTOH, is not very effective for vascular headaches unless it is used in conjunction with other meds. At least not very often. It's not near the major cure it was touted to be (hence the class action lawsuits). Rarely would it ever be effective enough to not need a breakthrough abortive medication as was suggested.
Good luck
PF
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captdshea
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Re: Please Help
« Reply #10 on: Jan 10th, 2004, 9:30am » |
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IMO, You could see a new doctor. Keep a log of your
Hheadaches, date, time it begins and ends, serverity.
The nuro will start treating you with prevenative.
The prevenative may or maynot abort your headaches.
In witch case the doc will use an abortive.
Make a follow up visit.
David
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Prense
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Re: Please Help
« Reply #11 on: Jan 10th, 2004, 10:38am » |
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on Jan 10th, 2004, 9:30am, captdshea wrote:The nuro will start treating you with prevenative.
The prevenative may or maynot abort your headaches. |
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Preventative meds will not "abort" attacks...
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captdshea
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Re: Please Help
« Reply #12 on: Jan 10th, 2004, 10:55am » |
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needhelp,
The prevenatives may or maynot end or abort the ch cycle. or as I said Headaches... They willnot stop an ATTACK as others have said.
pfdan
David
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Prense
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Re: Please Help
« Reply #13 on: Jan 13th, 2004, 7:34pm » |
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Misread your post...
Terribly sorry David.
Chris 
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captdshea
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Re: Please Help
« Reply #14 on: Jan 13th, 2004, 7:38pm » |
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Prense, No worries my brother. All the Best!
pfdan
David
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