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potatoricer
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Whats the secret to healthy eating?.Thicker Sauce
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questions from the new guy
« on: Sep 15th, 2003, 11:08pm » |
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Hello
I'm glad I found this site. I've got some questions that I hope you all can help me with.
I'm a 34 year old chef. I've been a cluster head for almost 2 years. My first attacks were in New Zealand where I worked for 3 months. I have been to numerous doctors, chiropractors, acpuncturist, cranial massuse, with no long tern relief.
It has been almost a year since my last pain-free cycle which lasted only 3 months. The specialist I just saw wants me to take depakote. I took prednisone- the side effects were terrible and no relief.
I am skeptical of taking any more chemicals after my last experience with prednisone. I have taken numerous vitamins, minerals, and herbs with only temporary relief (for 10 days tops).
NOW for the Questions....
a. Have any of you taken depakote? If so, what were the side effects, if any, and did it help?
b. Have any of you, or do you know anyone that has nearly a year cycle without relief from the pain?
c. Does anyone know other approaches for helping with the pain or stopping the symptoms of these cluster headaches?
I've never spoken with anyone that has been a sufferer of these, and I hope there is help out there!
Thanks!
(I'm sorry if this posted twice- I hit the tab key by accident!)
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TxBasslady
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Re: questions from the new guy
« Reply #1 on: Sep 15th, 2003, 11:31pm » |
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No doubt, you came to the right place for information. If you will click on the links to the left you can find most anything you ever needed to know about CH.
I am relatively new to this site, but I can tell you that there are many, many folks here that can and will help you.
This site is a God send.......so much info on medications, treatments and alot of how to deal with being a CH sufferer.
So, pull up a chair......and the responses will begin to roll in real quick. But be warned....this site is very addicting !!!!  ;D ;D
Best wishes for you...hope you find all the answers and hope you have lotz of pfdan.
Jean
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frenzik
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Re: questions from the new guy
« Reply #2 on: Sep 15th, 2003, 11:44pm » |
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Welcome Potatoricer,
Jean is 100% correct. Sorry you have to be here and that you have been suffering but you are in the right spot. I, too, am pretty new to this site but there is a wealth of information and friendly support.
The best thing you can do is READ, READ and then READ some more. The buttons at the left will give you more information that you would think possible. Get hooked up with a good neurologist who has some experience with CH.
Grab an oar, we're all in this boat together.
Regards, and wishes for a restful night.
F2
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'The charm of fishing is that it is the pursuit of what is elusive, but attainable - a perpetual series of occasions for hope" John Buchan - date unknown
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UnsolvedEquation
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Re: questions from the new guy
« Reply #3 on: Sep 16th, 2003, 12:04am » |
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Welcome to the boards. It's hard to believe more people haven't jumped in to respond. Where is everyone at ?
(a) Yes, tried Depakote. Lots of side effects but not as bad as Prednisone...Didn't work ( for me )
(b)Yes. Three years straight this round (so far )...it's called being 'chronic'.
(c)There is no cure. You'll just have to experiment and see what meds or med combos seem to help you, if any. Most seem to prefer O2 and Imitrex.
And do what everyone else is suggesting ...START READING !
Good luck !
~Unsolved~
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ClusterChuck
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Re: questions from the new guy
« Reply #4 on: Sep 16th, 2003, 4:51am » |
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Sorry you have to be here, but glad you found us, welcome aboard.
I have no experience with depakote.
I did not hear you mention the most effective drug prescribed: verapamil. That seems to be the most effective drug prescribed. It does not work for everyone, but it is a must to try. That is a preventive medication and may take a week or two to get into your system. Your level depends on your body. Some get results at only 180 mg per day, others have to get up to the 900mg range before it works.
Next is the abortive drug, oxygen (O2). It works for most people. It is very inexpensive, and has virtually no side effects.
Another abotive drug is imitrex. Some get results from the pills (not many do) and then others get it from the nasal inhaler, but most get it from the injection. For some, it does not work.
A good place to get more info on meds is the link on the left, OUCH website. There is a spot that lists the various meds.
One thing you will learn about this bastard is how different each person is on the treatment. Unfortunately, it may take time to find the level or combination of drugs that will work for you
Another thing, you did not mention is what tests have been given you to eliminate other causes. A CAT scan and MRI are almost a must to rule out anything else. They are very important tests.
I have rattled on long enough ... This is going to be a long trip, and we are all in the same boat .. Therefore, grab an oar, and add your strength to get this boat moving ... Start rowing!!!
Almost everyone of us will tell you the same thing ... read read read ... there is a lot of info in the buttons on the left ... You can only help yourself as most doctors do not know that much about this debilitating illness.
A good site to read about drugs and their effects and side effects is: www.rxlist.com
Good luck, and keep us informed, we care.
Chuck
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Karla
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Re: questions from the new guy
« Reply #5 on: Sep 16th, 2003, 7:29am » |
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I tried depakote and was allergic to it. Yuk. Not much fun. I am chronic also. Hang in there and don't give up. There are lots of meds to try it will just take some time to find one that will work for you. Maybe you will get lucky and the depakote will work miricles for you. Next I would try verapamil and if that doesn't work by itself add lithium and try them together and see if they work. Sounds strange but sometimes they work together when they don't work individually. Get some oxygen to breath for the attacks. It is cheap and easy to use. See the oxygen info tab to the left on how to use it properly and so you know what to ask the dr for exactly.Try taking hot showers and see if that helps when you are getting hit. If it does nothing for you stick your face in a freezer or air conditiung unit to see if that helps. Some people get relief with hot or cold temps. Good luck!
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Karla
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aprilbee
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Re: questions from the new guy
« Reply #6 on: Sep 16th, 2003, 7:39am » |
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Welcome!! Sorry you had to but glad you found this site, it is wonderfully helpful!! I haven't taken any of the medications you've listed, but I've been through a plethera (sp?) of medications throughout the years, I've suffered for 17 years. A lot of my life with CH has been trial and error, I am now taking Relpax, it works pretty well, but the best thing is almost no side effects!
Keep hanging in there, we are all here to lend a shoulder, ear, tear, whatever you need!!
Stay strong and vibes for pain free days and nights! (PFDAN)
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Miss_Deleny
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Re: questions from the new guy
« Reply #7 on: Sep 16th, 2003, 7:50am » |
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Welcome! Sorry you had look for us but glad that you found us! Like others before me said ... read, read, read and read some more. This site has more information than most doc's out there. The more you know, the better you will be when you talk to your doc. Find a nero that knows about CH. It might take you some time to find the right combination of meds but don't stop until you do.
There is no "cure" for CH YET but I have faith that one WILL be found! In the mean time, you just have to be strong and find the right meds that will work for you.
Wishing PFDaN's to all,
~April~
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Melissa
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Re: questions from the new guy
« Reply #8 on: Sep 16th, 2003, 8:58am » |
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Hi Potatoricer and WELCOME to the family! Please, please, please check out this link:
http://www.clusterheadaches.org
Once there, click the link "Cluster Help", there is LOADS of information to help you!!! While you're there, please take the time to register to become an O.U.C.H. (Organization for Understanding Cluster Headaches) member!
Sorry you are suffering but this is the best place to be for your condition!
Melissa
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potatoricer
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Whats the secret to healthy eating?.Thicker Sauce
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Re: questions from the new guy
« Reply #9 on: Sep 16th, 2003, 9:53am » |
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Thanks everyone!!
IN just a matter of hours I have had many ?'s answered, and made very welcome.
All the info is great, and have learned so much!
Thanks again,
Ricer
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Prense
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Re: questions from the new guy
« Reply #10 on: Sep 16th, 2003, 6:14pm » |
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If you are concerned with side effects from depakote, then perhaps you might want to shoot for verapamil. It is tolerated by many and the side effects are minimal. I have not had a PF span longer than a few days in the last ten years. Recently, I have had phenomenal success with imitrex injections (10 mins or so to completely kill the HA) and I am hoping to have the same results with O2. Unfortunately, I have not had any success with preventative meds, but I have not given up on that route. Best wishes for you!
Chris
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Charlie
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Re: questions from the new guy
« Reply #11 on: Sep 16th, 2003, 11:43pm » |
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Welcome aboard and you're among friends and people who understand this horror.
I used Depakote for my epilepsy. It wasn't very effective for that though. I do know that it has to be monitored because of liver considerations. If you're not careful it can help you put on a little weight sadly.
I have been pain free for 12 years to answer your question about remissions. Maybe they'll not return but they have been known to. I'm not complaining.
Here are two links: One for a technique I found effective and a second link to a description of this disease which does a wonderful job explaining to employers and others that this has nothing to with what is thought of as a “headache.”
http://www.netsync.net/users/charlies/
http://www.ouch-uk.org/ch/note_colleagues.cfm
Good luck and let us know how you're doing.
Charlie
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ebk3
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Re: questions from the new guy
« Reply #12 on: Sep 19th, 2003, 7:43pm » |
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hey friend welcome!
My success is with imitrex injections, never have failed so far. Ch gone within 2 minutes, Prednisone stopped my last cycle in it's tracks,
Depakote was prescribed because the better alternative Verapamil didn;t fit with my blood pressure levels. Cycle was already over due to the prednisone taper so I don't know if Depakote did anything
Gene
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The sufferers of the worst pain that humans endure, are very rare. Their very real hopes for the relief of this pain lie almost completely with each other.
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