Jump to content


Advanced Members
  • Posts

  • Joined

  • Last visited

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

trytosurvive's Achievements


Newbie (1/14)



  1. Yep Happens. Usually left sided, started a week ago on but on right side. I had a occipital nerve block when it was on the left side, good for 2 days and it switched to the right side! Telll me this thing aint ALIIIIIVE!!
  2. He did suggest Clomid but I was leery of the side effects. He prescribed Soduim Oxybate, it stopped my CH in about 2 weeks and I went from severe chronic to no CH at all for the last 1 1/2 yrs or so. Nice thing is I didn't have to take it for very long. I haven't taken any meds for at least a year or better. I posted more info on this in share your busting stories awhile back. Thanks Spiny, never was one for political correctness so that's fine, Happy New Year to all,,
  3. Hello all, Unfortunately my CH has returned since being Ch free since the TN convention. Another kick in the pants my main guy, Dr.Todd Rozen has moved to Florida and is no longer in PA. He will be difficult to replace as a doctor that understands the issue if not impossible. Still have my O2 tank until I figure out my next move. Well wishes to all, TTS
  4. At the conference in TN this past September we were told it would be years in the making. Not such good news. Sorry :-/
  5. Would need non-alcoholic mamajuana, if I even smell alcohol it's off to the races for me. I have completely been off all meds for 5 months. No triptans nothing. I now firmly believe the use of that stuff contributes to added attacks, for me anyway. Just use oxygen and fight thru it. Did a huge dried fungus dose but didn't do the trick. Same with seeds. I admit it lessens the intensity but still feels like my teeth are getting ripped out, eye water, nose run etc. Just not banging head off wall. Not sure why, but this has been the case for me with all attempts at stopping CH. Use something new, it works for a month or so and then bang!! If anyone is similar maybe they have a particular dosing schedule or something I can follow.
  6. Yes, fungus and seeds. Seems like it got used to it. Have an appointment with my Doc next week. Going to talk to him about it to see if it is an avenue to explore or not. Thanks, CH Father, Ketamine is more abortive I think. Looking for a knock out punch. I will report back if I go with it. I'm sure I'll have a fight with the insurance co.!!
  7. Your Welcome, I'll eat these like chicklets if they work!! Back to chronic again. Just got my O2 tank filled. Nothing working, MM, HBRW, RC and all the rest. See you in Nashville, gotta find something.
  8. Has anyone heard of tried this? thanks New drug for cluster headaches Chronic cluster sufferers may benefit from sodium oxybate (Xyrem), according to a report in the leading neurology journal,Neurology. Xyrem is a drug approved for the treatment of narcolepsy but it is also being evaluated for the treatment of pain of fibromyalgia, chronic fatigue, and other conditions. It is well established that patients with cluster headaches often suffer from sleep disorders and cluster attacks often wake patients from sound sleep in the middle of the night. It is logical to consider drugs that affect sleep in the treatment of cluster headaches. However, traditional sleeping medications do not help cluster sufferers. Approximately 10% of patients with cluster headaches suffer from chronic clusters, which means that they have headaches for years without a break, while the other 90% have cluster periods lasting a few weeks to a few months every year or every several years. The article in Neurology describes 4 patients with chronic clusters who were treated with Xyrem with excellent long-term results. In one patient relief lasted 8 months while in the other three for up to two years. Side effects consisted mostly of dizziness, some memory difficulties, vomiting, and weight loss, however they were not severe enough to stop taking this medication. Xyrem is a controlled drug with potential for abuse and is dispensed only through a single centralized pharmacy.
  9. Jeebs said Can I get an amen? Yep two of em!! AMEN,AMEN BUST AWAY!!
  10. Thanks for the info. Nice to have you on the board by the way. I have family in Perugia, supposed to go visit but havent been able to get away yet.
  11. IÂ’m curious, just sprung the clocks ahead 1hour for daylight savings time this past Sunday. I got hit last night hard enough to run for the o2 tank, felt like my teeth were getting ripped out thru my left eye. I havenÂ’t had to do that since October. Seems like playing with the clocks impacts my head. Does anyone else see this pattern? Going to MM bust ASAP I guess before it sets in.
  12. Spiny,I saved myself all the grief of explanation by updating my chart. Just put down allergy to Xylocaine / EPI (technically speaking it is sort of an allergy), trust me if its on the chart he/she won't use it on you for obviouse legal reasons.
  13. Yes, warm it up slow, give it a good shake. Then use. Happened to me twice! Still worked. Hope this helps.
  14. Sorry Torn2, I will give you some of the more common symptoms but these are not all inclusive. Symptoms of cluster headaches often include stabbing pain in one eye (behind), runny nose, watery eye, and a drooping eyelid on the affected side of the head. Does this happen as well? The triptans you speak of, is it pill form or injection? Usually 6mg injections will abort the attack for most CH folks. Also if the pain is constant around the clock it doesn't fit the mold of CH. Everyone is different of course.
  15. I have done that but kept it in the fridge covered with foil.
  • Create New...