This Topic was moved here from Getting to Know Ya by Guiseppi.

Hi Stella, I moved your post down here as I was hopeful more people would see it and maybe have some suggestions for you. You have one hell of a full plate going on, I'm not familiar with most of your meds, except for Topomax, which I have no personal experience with.

I use Lithium as my prevent while on cycle. I know it's also effective for bi-polar, might be something worth discussing with your doc.

Are you working with a headache specialist neurologist? With a complicated multi diagnosis that you have, I fear a GP or even a standard neuro might be a little over their head. When you get a second, read this link. We find many people that oxygen didn't work for, find immediate success when they change HOW they use 02. There are 3 critical keys, 100% oxygen to the lungs, no outside air, no exhaled air, a high flow rate of at least 15 LPM, some go upwards of 45 LPM, and get on it at the first sign of an attack. Driving to the hospital to get 02 won't work because once you let the beast get a toehold we find 02 loses most of its effectiveness.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Welcome back to the board.

Joe

Hi Stella,

Good 'ol Giusseppi/Joe is certainly right about the O2 thing and the importance of working with a headache specialist. Of course you've seen what a buncha bumblers the medical community tends to be regarding CH, and they still pretty much universally take an outdated ineffective approach to administering O2 for CH.

So my guess is that like so many  of us, O2 does work for you, but only if administered as outlined above by Joe.

I'm glad you're here gathering info and advice. Smart move!  :) There are so many ways to fight the beast, and this is the best place to find out about them.

Here's one thing you might find interesting - a relatively recent topic here regarding high dose vit D3 for CH prevention with some folks reporting impressive results: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Quote:

and the headaches were "ironically" were occurring every time I drank alcohol

Unfortunetly you discovered the hard way what we all know.  Alcohol is a sure-fire trigger and when you are in cycle, it's best to stay completely away from it.  The reason it's a trigger is becasuse alcohol is a vasodialtor and when we are in the throes of an attack, what we need is a vasoconstrictor.  Caffeine, for instance.  Not to mention some of the meds we take.

Given your diagnostic picture, I believe it would be unappropriate, even unethical, for us to offer a series of treatment suggestions for your clusters.

I'd encourage lining up a psychiatrist and a headache specialist who would work in collaboration. Trying to juggle you own treatment package is not wise.
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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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Unless I missed it, you don't say you have been diagnosed with CHs by anyone. You do list symptoms that might indicated CHs but could also be related to a different cause altogether. As Bob said, you need to work with a headache specialist and probably with whomever is treating you for bipolar. There may be some crossover in effective meds, but don't go down that path on your own. The more complicated the medical history, the more you really need good medical advice. So many more docs are familiar with bipolar than with CHs, that's why we strongly urge you to seek out someone who has knowledge of this orphan disease. Good hunting, and God bless. lance

bejeeber wrote on Jun 16^th, 2011 at 1:12pm:

Here's one thing you might find interesting - a relatively recent topic here regarding high dose vit D3 for CH prevention with some folks reporting impressive results: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I agree fully that giving the D3 a chance is a great idea. My cycle started about a month ago and I was getting hit 3-4 times a day. I have recently gotten back on my 1200 mg lithium with 50 mg topomax but 5 days ago i started taking D3, Omega fish and Calcium citrate chased by all natural lemonade and have been pain free since. Now, I'm not saying the vitamins are the only reason but I am thinkin it's no coincidence that the beast left the same day I started taking them. Please read up on here and listen to our family. They really know what they're talkin about and how to help. We will help you if you let us help you. Best wishes.

Pfunk 8-)