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Topic: Newbie on the meds rollercoaster (Read 833 times) |
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OregonDaisy
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Newbie on the meds rollercoaster
« on: Mar 10th, 2008, 1:39pm » |
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I'm new here and have never had anyone to talk to that understands these stupid headaches so here is my story...please help if you can.
I have a lot of headaches in general. I started having these when I was pregnant with my 2nd kid. I didn't realize what they were until last year. I have about 1 cluster a year. It lasts for a couple of weeks. When I first started getting them I went to the dentist, eye dr., chiro, etc. seeing if something was wrong. I went to the ER once, and started taking muscle relaxers every night before bed trying to keep them at bay, taking Vicodin as needed. Was already taking Toprol for bloodpressure. Fast foreward 4 or so years, start realizing they're cyclical. Go back to Dr., go to cardiologist, neuro, quit taking daily muscle relaxers (wake up for the first time in 5 years!) tried O2.
Neuro says not to do 02, it will give me rebounds, need to try to prevent....does MRI (O.K. other than a "partially empty sella", which she says is no big deal) puts me on Topamax (ie Stupamax) and gives me Relpax for abortative. She said the topamax should prevent and also help all my other "daily normal" headaches. It didn't, I went off it after 3 months or so. Also go get a sleep study. Turns out I have a raging case of sleep apnea. (quit breathing 73 times an hour)
So now, treating the apnea, still on the Toprol, also on Zoloft, have Relpax and nasal Imitrix (haven't tried yet)for abortative....
I'm in a cluster now. But it's different. They're not everyday. They're happening during the day for the first time, they seem to "linger" or "shadow" for most of the day. I'm not sure at what point to use "abortive" So mixing, Aleve, vicodin, and trying to save abortive for bad ones. Now the neuro wants me to start taking Neurontin (I filled it but haven't started it yet). Sounds nasty. I don't really want to take something EVERY DAY that is messing with my brain for something that happens once a year for a few weeks.
I'm confused, frustrated, not sure what to do. For most of the year (when it's not happening) I don't think about it except for the piece in the back of my mind that wonders when the next one will come. But when I'm in one it's ALL I can think about.
Any advice for me (and thank you if you actually read this whole long novel)
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thomas
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Re: Newbie on the meds rollercoaster
« Reply #1 on: Mar 10th, 2008, 1:51pm » |
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If used properly, O2 is one of the most effective and safest treatments for CH.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Brew
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Re: Newbie on the meds rollercoaster
« Reply #2 on: Mar 10th, 2008, 2:01pm » |
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on Mar 10th, 2008, 1:39pm, OregonDaisy wrote:| Neuro says not to do 02, it will give me rebounds, |
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You're neuro's an idiot. (Okay, maybe not an idiot, but she doesn't know what she's talking about re: cluster headache treatment.)
Massive amounts of imitrex, ibuprofen, acetaminophen, aspirin will give you rebounds.
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Guiseppi
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Re: Newbie on the meds rollercoaster
« Reply #3 on: Mar 10th, 2008, 2:11pm » |
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Read the 02 link on the left, print out the info and INSIST the neuro let you try the 02. If they still refuse get another neuro. A neuro who doesn't understand how effective oxygen is, rates up there with one that still uses leaches to cure a cold. Too far behind on their studies to be of any use to you.
For now, try slamming an energy drink at the first sign of a hit, or even to deal with the shadows. One containing both caffeine and taurine, an effective abortive for many.
The imitrex nasal spray has worked for many on the board, give it a shot next time you get a hit, hopefully it'll help.
Welcome o the board, I'm so glad you found us, so sorry you had to find us. It will start sounding like a broken record but you MUST try oxygen. Percentage wise it's proven far too efective to not give it a shot.
Guiseppi
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DennisM1045
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Re: Newbie on the meds rollercoaster
« Reply #4 on: Mar 10th, 2008, 2:30pm » |
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First off, welcome!
Your instincts are right on. My Neuro was pushing me to use meds year round instead of just during a cycle. It took some convincing in the form of printed studies to get him to come around but he did.
If you are episodic there is no reason to be on these meds year round.
I tried a course of Neurontin and never quite got over that two martini buzz and gave up after a month.
I'm trying verapamil again this cycle as it dosen't affect my thought process. Though my resting heart rate is down to 50bpm now so I don't think I can go much above my current 200mg and that might not be enough.
Either way, 100% Oxygen @ 15 lpm with a non-rebreather mask is my most consistent abortive. I back this up with energy drinks to keep reattacks from popping up and, when all else fails, Imitrex injections for the big ones O2 won't touch.
If the Verapamil doesn't work this time around I may stick with my abortives and just suffer through.
Good luck...
-Dennis-
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Superdave
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Re: Newbie on the meds rollercoaster
« Reply #5 on: Mar 11th, 2008, 12:01am » |
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Hello OregonDaisy
Glad you found your way here. These guys have really helped me out, stick around you'll be feeling better soon.
Superdave 
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Wow! you mean it's just in my head?
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darknight
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Re: Newbie on the meds rollercoaster
« Reply #6 on: Mar 11th, 2008, 7:01am » |
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Welcome
I 2nd Guiseppi O2 O2 O2.
its helped me and i hope it helps you!
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jace77
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Re: Newbie on the meds rollercoaster
« Reply #7 on: Mar 11th, 2008, 8:05am » |
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Sad to say, finding a good neuro is tough, have you tried melotonin?
PF wishes
Dorothy
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Bob_Johnson
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Re: Newbie on the meds rollercoaster
« Reply #8 on: Mar 11th, 2008, 9:05am » |
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Your message conveys both anxiety and confusion about meds which is getting in the way of an effective treatment program. A few specific comments:
1. Stop use of OTC pain meds. They don't work for CH (although may help with residual pain after a major attack). Using them too muc will lead to rebound headaches.
2. NOT using the Imitrex with an attack is poor economy. The key to this class of meds is to use them at the first sign of a cluster attack. Delayed use greatly reduces/blocks their effect.
3. Neurontin & Top: These are sufficiently new meds to use with CH that I regard them as experimental at this point. Suggest start with verapamil as a preventive med; has a long track record of effectiveness, minimal side effects. (My gut says that docs are using the N&T because they are the latest meds mentioned in the literature, not necessarily because they are demonstrated to be the best first-line responses.)
4. IF you are afraid of using any particular med it hints at getting incomplete information about, e.g., side effects. But it's counterproductive to get medical treatment (Rx) and then to avoid using that treatment. Discuss your concerns directly vs. being fearful.
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. 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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| « Last Edit: Mar 11th, 2008, 9:05am by Bob_Johnson » |
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Bob Johnson
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