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timpromo

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Posts posted by timpromo

  1. Hi Mel,

    I've had Cluster headaches since 1993.  25 years now.  I've gone through the gamut of treatment as well as doctors.  From doctors who wouldn't prescribe anything to doctors who were willing to work with me.  I'm currently under the care of a neuro. who has me on the following preventative regamin: 900mg of Lithium, 240mg of Verapamil, 1000mg of Depakote, 300mg of Gabapentin at night (to help keep me in REM sleep).  I have a prescription for injectible imitrex to use when I get a headache.  I split these to make them last twice as long.  I also buy all of the imitrex that the prescription was written for instead of stopping when I am out of cycle.  I keep a mini stockpile in my closet.  This particular neuro is not an oxygen prescriber either and I while I feel like she's willing to provide me with any chemical I want, I may have a conversation with my primary or head up to the University of Virginia and visit with their Headache Clinic.  They advertise the merits of 02 right on their webpage.  It is amazing how ignorant doctors are.  Don't be afraid to confront your doctor - everyone on this board has had to do it.

    Good luck!  It does get better!

    Tim

  2. I'm an episodic clusterhead.  I was dx in 1993.  I've been dealing with these sons of bitches for awhile now.  I was in remission for almost two years then got blindsided on 5/3/18 with another cycle.  1-2 per day.  No rhyme or reason in regard to time of day.  Almost always its during a period of relaxation.  I'm taking 2000 vitamin D3, 900 mg Lithium, 240 mg Verapamil, 1000 mg Depakote and I abort with subcu imitrex.  I can't seem to shake this cycle.  I will get a couple of days headache free but I just can't shake them this time.  Batch, do you maintain the vitamin regamin year round or just during the cycle?

  3. My apologies for not responding sooner.  I've printed out the O2 study and plan on reading it as well as taking it to my neuro. appt. on Tuesday.  My neuro. is pretty headstrong and I've trying to find a new one without too much success.  I think I'm at the end of this cycle.  I've been through 2 predisone treatments.  Each one stopped the cycle while I was on the dose, but the cycle resumed shortly after each regimen was completed.  I'm having inconsistent night headaches...every other night or so...only one...but enough to interrupt my sleep schedule and exhaust me.  I've experimented with melatonin from 6mg - 12 mg.  It hasn't helped me with sleep.  I take the xanax to relax enough to fall asleep.  I was nervous about taking the xanax with the melatonin so I only took melatonin in several different doses.  I end up just laying there staring at the ceiling.  However, the headaches that occurred while on the melatonin seemed like they were less intense???

  4. That's good information to have Denny.  I've had these for a long time and haven't had a doc yet tell me that.  The standard answer I always got was, "There's no evidence to support that" I'll discuss with the neuro on Tuesday and if I come out empty handed I'll head to the GP.  They never seem to have a problem giving me what I need.

  5. Good afternoon everyone.  My name is Tim and I live in Richmond, Virginia.  I've had/been diagnosed with CH for 23 years.  I'm currently in a brutal cycle.  I've been "in cycle" for almost six weeks.  I started taking Lithium several years ago and my cycles have been brief (1-2 cycles a year - seemed seasonal) and, for the most part, tolerable until now.  I was actually headache free for the past two years.  Currently, I've been getting three headaches or so a day.  All of them are usually at night - between 10:00 PM and 4:00 AM. I abort using imitrex and I divide the syringes to make the injections last longer.  I can turn two syringes into 6 injections.  I learned this out of necessity.  The reduced dose takes longer to take effect, but it still works.  Last night was a bad night.  My physician suggested increasing the lithium by 1/2 tablet while "in cycle".  I've also been prescribed two predisone dose packs.  Each one stopped the headaches while I was taking them, but the damn things came back each time.  I took my evening dose of lithium, xanax, propolanol and melatonin and I still wasn't able to get any sleep.  I haven't slept much in several days.  I'm pulling my hair out with the headaches but also with not being able to lie down, relax, watch a football game or even work effectively.  I've had oxygen a couple of times in the past. My cycles are so intermittent that the monthly investment wasn't worth it.  I also seemed to have to battle with my neurologist to get it prescribed so my GP prescribed it for me.  I'm curious to know if anyone can suggest a technique(s) where I possibly get some rest.  Additionally, when is too much imitrex too much?  Any experience with that?  I'm aborting everytime and my pharmacist is advising that this can make things worse? I don't think anyone knows what these are like.  The frustration never gets old.  I don't know......any advice is appreciated.

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