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Billie

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New and Glad I Found this Forum
Jan 16^th, 2010 at 9:45am

Hello, I am 29 years old and have been suffering with episodic cluster headaches since I was 15. My headaches will start with the change in seasons (any season) and last for 2 months. I get 1 or 2 daily for 2 hours at a time EVERY DAY at the same time. Recently, it has been 6 a.m. They stay on the same side of my head for that 2-month period. When that 2-month period is over, another season later (in the same year), I will get bad headaches on the other side of my head for another 2-month period. After that 2-month period, I usually have a remission period of a year, and then the vicious cycle begins again.

The pain begins rapidly and is mostly around my eye but shoots all over that side of my head and down my neck. It is sharp, and I always tell my husband it feels like my brain is giving birth. My eyelid droops. I sweat, shake, get extremely agitated. It hurts to talk. It's the worst pain in the world.

Anyway, I see a new neurologist in a couple weeks, and I sure hope he is better than the last one because I would love to get these things under control. I haven't left the house since Christmas because I have been so drained dealing with the pain and afraid a 2nd one will pop up while I'm not home.

I am really glad I found this site because I know no one else who suffers these type of headaches. So, hello, that is me, and if you would like to know anything else, just ask. =)

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Bob Johnson

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Re: New and Glad I Found this Forum
Reply #1 - Jan 16^th, 2010 at 12:57pm

You should not have a problem locating a good HEADACHE doc in you area. Our collective experience, plus medical research, shows that most neurologists do not have the training or experience to deal with complex headache disorders. Seek someone with deep skills is essential.
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LOCATING HEADACHE SPECIALIST

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Look for "Physician Finder" search box. 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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Bob Johnson

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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: New and Glad I Found this Forum Reply #2 - Jan 16^th, 2010 at 5:04pm welcome, my name is bill and i to have the clusters. Just wanted to welcome you. Bill
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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: New and Glad I Found this Forum Reply #3 - Jan 16^th, 2010 at 6:45pm Hi Billie...now that you found us..you know too many people who suffer from this affliction Welcome ,Iddy
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bejeeber

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Re: New and Glad I Found this Forum
Reply #4 - Jan 16^th, 2010 at 6:49pm

Hey Billie,

Your symptoms sure do sound familiar (although my CH has never switched sides).

I think you'll find that your most effective relief will be found when you research and ask questions here on this site and possibly also at clusterbusters.com, then take charge of your own treatment program. This will probably be necessary even if you do find a good headache specialist who doesn't follow the all too common practice of making a cluster sufferer wait months for an appointment.

Such a specialist probably won't advise you adequately about effective O2 use. This has evolved in recent years and here's a must read/must do:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Please let us know what meds etc. you've tried for combatting this beast.

Sorry that you need to be a member of this club, but welcome.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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lorac CH.com Old Timer Offline Imagine Posts: 433 Tennessee Gender:	Re: New and Glad I Found this Forum Reply #5 - Jan 16^th, 2010 at 8:45pm Welcome Billie! Best place in the world to be....right here! Any questions answered ...right here. Support and friends....right here! hang in there lorac
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Billie

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Re: New and Glad I Found this Forum
Reply #6 - Jan 17^th, 2010 at 8:16am

Thank you all so much for replying. I am going to look at all the links right now to make sure I do see the right kind of physician for these things.

As for medications, I have been taking Topamax with no success (at a dose of 100 mg in the morning and 100 at night) for a couple years now. The dose had been ramped up over the years by my previous neuro. She insisted it was helpful. I have found the medication Fioricet very helpful as an abortive from my late teens until last year. It worked fast too, and it is frustrating that it no longer works for me.

I went to my PCP for help since my previous neuro was not listening and am currently on veramapil since 12/30/2010 and have found that I haven't had a bad headache in the last couple of days. I have read a couple of posts about this med, though, and am a little anxious to see if it's going to do more harm than good, but right now I am just happy for the relief because I have been without an abortive med since mid-December, when they peaked again.

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bejeeber

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Re: New and Glad I Found this Forum
Reply #7 - Jan 17^th, 2010 at 11:39am

Plenty of cluster noggin folk around here find Verapamil helpful, so it sounds quite hopeful that you could be starting to see some results yourself indeed.

Of course not having an effective abortive really blows. You're undoubtedly noticing the practically unanimous enthusiasm for hi flow 100% O2 around here, and there certainly are lots of imitrex users also.

If you get an imitrex prescription from the doc, try not to let 'em pawn the pill form off on you - it is ineffective for many of us. Injections (a la this tip: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

) are the surest bet, followed by nasal spray.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Billie CH.com Junior Offline I Love CH.com! Posts: 62 Maryland Gender:	Re: New and Glad I Found this Forum Reply #8 - Jan 17^th, 2010 at 1:41pm Yeah, I've tried the pill form and also didn't find it effective. Never tried the injection, though. I've never had a doctor offer it to me in that form yet.
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Lefty CH.com Alumnus Offline Posts: 759 Gender:	Re: New and Glad I Found this Forum Reply #9 - Jan 18^th, 2010 at 5:50am Hi Billie, Sure does sound like clusters...! Get yourself over to the medications and treatments section, there you will find a wealth of advice and tips that will make this whole experience a little less daunting... 02... Lefty...!
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