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Everything posted by trytosurvive

  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.
  16. 1 hour away, how can I help?
  17. Purple interesting, Not to go off on another path but I had a gut feeling so I followed it. I have been looking at the (Hypophseal portal system).Looking at Oxytocin, its structure is very similar to that of vasopressin. When anything hits the HT1A receptors it induced oxytocin stimulation(also found in the retina). It's hard for me to wrap my head around this complex system, but since you like to read thought you may find this interesting. Would like to hear what you think. Funny thing is my Dr was going to give me CLOMID, it is a hormone to help women get pregnant, he says it resets everything. I didn't have to use it thankfully, but you will see the connection between the two if you read up on it.
  18. This link will take you to a fact sheet for FMLA. Please read it and see if it applies as you may have certain legal recourse if your employer did not follow Federal Guidline. http://www.dol.gov/whd/regs/compliance/whdfs28.htm
  19. Suggestion, get rid of the pain killers. It's proven that they actually cause headaches. 1st thing my nuro asked me is if I was taking pain meds. I can't find the link but there is a ton of research now linking pain meds to Migraine and headache issues. Besides they don't work for CH anyway. www.bbc.co.uk/news/health-19622016
  20. Update, going on 5 days of being PF and not being awoke in pain. I'm off all meds and feel good. Taking the D-3. I re-busted with 80 RC seeds on 9-26-13. Since then mild shadows here and there but otherwise fine. Have o2 just in case. This approach works, can't believe this is not part of main stream medicine or being researched in depth. ??? After all the wasted years. Can gaurantee I won't be without these beneficial life changing medicinal plants ever again.
  21. You need to see a good neurologist. Agree with Diamondmaker Manjiru, sorry about the pain, it all sucks. I hope you do not have CH and there is another explanation. Question for ya, are you able to lay down or do you rock,pace or bang your head off the wall? This should be the first question a good Nuro asks. Unlike Migraine, you cant really stay still or lay down with CH in a full blown assault. I have collection of staples from all the head splits during an attack. I have had it switch sides but never like you are describing. However nothing would surprise me. Let us know how you made out at the Doc's. Good luck! Another descrption for me anyway, Like a brain freeze caused by eating ice cream or a real cold drink to fast, but you can X that pain by 1000 and have that intense pain last for up to a couple of hours.
  22. Not sure of the strain? Can tell you they were white and blue or deep purple in color when in bloom. Was PF last night, yahoo! This is a first for me in 2 years I have got some breaks. Ricardo, since not many folks I gather are using MG, can you tell me how you prep em? Just want to make sure I'm doing it correct. And thanks to all for responding, it helps me vent and rid some anger that has been building for along time. I think by just talking with folks that understand is a theraputic home run form me as well.
  23. Hence my screen name!! I am truly an odd ball. If I were Indian my middle name would be black cloud. That has only happened once, thank goodness. I to said WTF, are you kidding me?? It felt like it made a bridge so it could cross over. Has anyone else ever had this happen? Also for some reason they do seem to grow longer, up to 4 hours sometimes. No way to sugar coat it.
  24. ClusterT, New guy here but have had CH for 21 yrs. Went from episodic and very predictable to Chronic 2 years back. The beast is a tricky thing, as I get older it seems to get worse, if that seems possible. For instance I had a occipital nerve block done on my left side (always left sided) the block lasted 3 days then I got slammed with a double. Yes both sides at once then it started coming on the right side. This has been my pace now, 6 or so months on one side then 6 or so on the other. The beast is very tricky.
  25. The 2 1/2 days I had PF were awsome. Midnight last night got the burn, water pouring out of eye, you all know the drill! However it wasn't as bad as usual and did not need any injection to get thru. Going to slug down another dose of MG now as I type this. Hopefully my RC seed will show up. This sucks!!
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