Hi, So i am a Chronic CH'r I am currently on Topamax 75mg, Lithium 450mg, Sumavel Dosepro, and generic pill form Sumatriptain, i also have several samples of zomig pill, and Relpax pill, I am getting my Oxygen delivered tomorrow at 5:30pm Hopefully it will work only time Ive ever got to try it was at the hospital and it never really worked but based off what you guys have told me that was because it was probably not at a high enough flow rate. any who, On Thursday the 28th i woke up and i could not see out of my right eye no CH but it went on for about 15 mins. so i remembered reading something on the warning on topamax about glaucoma, So i called my doctor and he said to stop taking the Topamax and go to the ER or see an opthamologist withing 24 hours. so i went to the opthamologist and got cleared no glaucoma everything looked normal she said she had no idea what could have caused it. well on Friday the 29th i spoke to my Neurologist again and he said starting on the first he wanted me to start the Topamax again but only 75mg. since Friday. I have had about 20-25 CH k-8 - k-10 most of them are at least 1 1/2 a couple 15 and a few 3-4 hours well Sunday they where so bad and i didn't want to keep taking the triptains i had to go to the dreaded ER where the nurse kept saying that Clusters where the same as Migraines and she could totally relate because she gets at least 2 migraines every 5 months ! errrrrrrr last night i had six and couldn't sleep at all i am trying to drink as much caffeine ass possible when i start feeling the attack coming but i have never had them this bad and i have had them since i was 11. Any other suggestions is there anything else the doctor could call me any anything i could suggest to him? also i am really considering getting disability i no i am young i work 2 jobs but i miss so much work from these damn things then i get so depressed about it. Has anyone had success in this?

Thank you! i have not been only took 2 triptain pills in the last week and at the hospital the gave me the migraine cocktail which has no triptains. I cannot take Verapamill because i have low BP. so they have me on the Topamax and i just started the Lithium about a week ago so i am slowly building up. I do agree that it could be rebounds and i cannot wait to try out the oxygen the right way and see if that will help me. i appreciate the advice. thank you so much.

If I read it correctly, you have 4 forms of triptans to abort attacks (but no useful information about how much you are using all of them, in combination, etc.)

Any doc who if feeding so many meds of the same type to you is suspect.

If at all possible, get thee to a specialist!

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. 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.
====
If a specialist isn't possible, have a firm heart-to-heart with your present doc about the triptan dosing.

You should not be using more than one of the triptans in a 24-hour period. Using multiple doses of one, or combinations of the various types you have, is excessive and can lead to rebound attacks. (Rebound: attacks caused by the medicine used to abort a headache. Too much of any pain med, even OTC ones, can lead to increase rate of attacks.)

I think this is a meds management issue needing some skilled, professional guidance.

Im sad to hear your getting slammed so hard.
a  friend of mine suggested i go to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Its something that has worked for many Cluster Headache suffers. With the way your getting hammered, and all the RX meds now swimming in your blood, It couldnt hurt to read about it for a few minutes.

Best,
Coach Bill

So i talked to my Neurologist and he is putting me on the prednisone taper thinks that will hopefully help. Oxygen will be delivered today so i will keep you all posted.

Besides the good advice everyone has given you already...I think you are going to find oxygen, when you get it, to be a savior.  If your Dr. specified a regulator that goes to 15  lpm, you should be o.k.  25 to 45 of course would be MUCH better.  I have a 25 lpm regulator and if I get on the 02 at the very first twinge of one coming on..I can abort it in less than 10 mins.

   Let us know how the 02 is wroking when you get it.

Thank you guys, I very rarely drink caffeine anymore Because the Topamax makes soda taste like metal. The Doctor has put me on the Prednisone Taper which i know is going to help. He also started me on Indomethacin Because he was just wondering if i may have been misdiagnosed and may possibly have Hemicrania Continua he said he doubts it but it is worth a shot. Normally you can tell within 48 hour if the medicine is helping you because you will be headache free however i am on the Prednisone so i wouldn't know until the prednisone wears off. So i guess we will see. Oxygen is being delivered today they called and rescheduled. i will let you all know when i get the regulator what LPM it is and how it works. Yesterday night i had 6 Headaches. I don't know how i am going to survive this. I am at 75mg Topamax, 500mg Lithium, Prednisone Taper (just started yesterday), and Indomethacin 25mg ( just started yesterday). so lets see what happens.

Lydia do you see Dr. Stark? I just moved from fort Belvoir. I went to the head ache treatment center in alexandria. I saw Dr. Khosla. He isnt there anymore but i know Dr. Stark is there.  They are pretty good there. I was upset when Dr. khosla left. Dr. khosla sent me to John Hopkins in Baltimore and that helped alot too. Good people there.

Once you've decided that you have had it with all the mainstream chemical/pharmaceutical treatments; once you're done with feeling like a zombie; once you realize that to most doctors, every problem is nail so they only give you varying sizes of hammers; once you're done with all of it, maybe you'll read the clusterbusters website and Batch's vitamin D3 regimen with some interest.

The best, most lasting treatments for this horrible condition, and the ones with the least number of side effects, are not the ones your doctor will prescribe. If he did, he would be putting himself out of business.

Some of us have tried to lead you to the water. Now it's up to you to drink.

Yes.

Have you read through the entire thread?

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

It's more than just picking up some vitamin D3. You have to take fish oil capsules (Omega3 fatty acids), and some minerals with it, lest your body's metabolism of the D3 starts leaching the minerals it requires from your bones. You have to take calcium, magnesium, zinc and vitamin K (some recommend taking additional vitamin A as well).

You also need to get a baseline serum 25(OH)D level so you know where you're starting. You want to end up between 60 and 110 ng/mL and be able to maintain it there. Although I would highly doubt it, you may not even be vitamin D deficient. And don't just take your doctor's word when the test comes back and he tells you you're within the normal range. "Normal" to the medical community is not what a clusterhead is shooting for.

I don't know how to put this gently or diplomatically, so I'll just say it: You have to take control of your own treatment, and stop taking what a doctor tells you as gospel. Being a sufferer of a very rare condition already makes you more of an expert than he is.

I agree My Neurologist said to give it a couple days after the prednisone taper to see if the indomethacin is helping today is day 3 on Prednisone and Indomethacin (one more does of prednisone) along with the regular Topamax an Lithium and I just had a Headache K-8 for about 1 1/2 Hours. So i really doubt i have Hemicrania Continua. But I honestly am at the point of trying anything to have a life again. ! I will be stopping at the pharmacy on my way home and picking up as many of these vitamins as i can afford =/