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Everything posted by 1961mom

  1. Yuri, there are (anti-seizure meds) such as gabapentin (generic name is Neurotin) commonly prescribed here in the US for CH pain, notably for the nerve or shadow pains. Verapamil, to my knowledge is a calcium channel blocker....it's borrowed from angina/high blood pressure patients. http://www.drugs.com/search.php?searchterm=verapamil Verapamil is in a group of drugs called calcium channel blockers. It works by relaxing the muscles of your heart and blood vessels.
  2. You inspire me....Hell, your whole family inspires me Dan! I can't wait to see the episode.....more than Christmas kind of can't wait!!!!!
  3. This could work! We just need 12 CH to pose (or produce the pix from past Myco porn sessions) I count 3 so far....that's 3 months done. In order to be a month in our CH Calendar simply "arouse" interest and come up with the $200 acceptance donation (to be used to produce a quality calender). These guys have even more ideas and cater to fundraiser's! http://www.printingcenterusa.com/printing/calendar-printing?gclid=CP72suLEqagCFQkFbAodaSUlHg 12 x $200 = $2,400 (photo appears for each new month) ? x $10 = $$$$ (Cluster buster members pay $10 to have your birthday printed on the calendar on the specific day) RED BULL makes a $5 k donation too! It could happen!!!! GO TING!!! The Calendar Girls did it for the same reasons different malady! I'd help!!!! http://www.chasingthefrog.com/reelfaces/calendargirls.php
  4. In fact there should be a box of those in the greeting packet! ;D ;D ;D ;D ;D
  5. Mushroom shaped cookies available at World Market! Loved those things!
  6. Husband is joining...is there golf? ;D
  7. Tune into "Portlandia" on On Demand http://en.wikipedia.org/wiki/Portlandia_%28TV_series%29 You'll get your Portland fix and some good laughs too!
  8. I'm going to the Chicago Convention and get baptized in my new Religion!! At the Portland conference an impromptu discussion arose around all of the above mentioned issues as one of our guest speakers addressed the confluence of options we have as a group given the fact efficacy lies within a Schedule I drug. We discussed Sansert, http://en.wikipedia.org/wiki/Methysergide Related compounds Its molecular structure is closely related to that of LSD. Like LSD, methysergide also produces psychedelic and hallucinogenic effects.[9] About 4 mg is equal to 25mcg of LSD.[9] and the fact that it HAD made it into our pharmacology system (FDA approved, clinical trials, etc.) even though it's closely related to LSD. Sansert production has been removed (tumor-causing in some folks) from the US, but is still produced by Sandoz Pharmaceuticals in Canada. I myself had no idea (in the 90's) that what was being prescribed to me (and working very well!) was so closely related to LSD. I didn't care! It worked. It was prescribed to me by my neurologist and it was completely legal. So for me, within the confluence of options as to where to put my energies as a soldier in this war, may not lie within the "education" to the world on this subject. It doesn't seem to matter (quietly behind the scenes within the process of clinical trials, etc.). Scientist's and researchers already understand this to be true. ADHD meds, etc. What is disturbing to me (and possibly the most exciting opportunity when viewed as the "other side of the coin") Is how very little our medical community knows about this disorder. I asked my Neuro how many hours he spent on CH while at the Mayo Clinic getting his doctorate....his answer 6 hours give or take. 6 hours, really???!!!! I decided to take the approach Hipshot mentions.... As my own personal crusade with a bit of "Chicken Soup for the Soul" integrated into my approach "That throwing one starfish back into the ocean DID matter. It mattered to that particular starfish". As a group our cohesiveness is challenged by the following; 1. Lack of Medical community awareness. (Correct diagnosis in a timely manner) 2. Inability to treat effectively even if correctly diagnosed.  3. Inability to admit #2 by our medical providers. 4. PTSD in sufferers who quietly need to disassociate once the episode is over. (New meaning to "Don't ask, don't tell") The only reason I like the recent development of the ONSi or Deep Brain Stimulation procedures is it has the medical community discussing Cluster Headaches. My career background lies in Marketing and we believe even bad advertising is good! I have shared "our" disorder with my dentist, my 02 supplier, my numerous neuros by printing trusted sources most current papers on the subject. I feel as tho I've just thrown "A starfish" back into the ocean, but truthfully I long for the day when the medical community views the 3 million sufferers (worldwide) as worth more than 6 hours of study. Cluster Headache Conventions are (IMHO) an excellent way of realizing the desired outcome of the medical community taking notice and being inspired to do more research. But for fun, in the meantime, can we do our own version of a "Flashmob" distinct to our disorder???? Maybe we all scream at noon (while on our bicycles) in front of our community libraries wearing t-shirts with the Hippocratic oath printed on them! LOL All kidding aside, group gatherings are newsworthy! Happy Bicycle Day everyone!  Â
  9. Just to chime in regarding Beavers...I'm an Oregonian and we have a few folks in a sleepy little town called Corvallis that just love them! I, however am a DUCK (no NRG drink named after us sadly).....But still fitting in a way to this inspiring thread... If it walks like a Duck, talks like a Duck....it's probably a DUCK! First I want to speak to CHFather and say thanks for posting quick links. It was so helpful to me in my early days here on the boards to find "links" reposted as a courtesy by others who knew right where to jump to, copy & paste. Priceless gesture of kindness IMHO. Les...I'm a firm believer that Verapamil has no business as a treatment option in our disorder and would like to have permission to "borrow" your well-phrased explanation that begins.... ....you've eloquently written what I've been unable to write for approximately one year now. My blood can almost boil when I get on the subject of verapamil! So before I allow that to happen I'll assume the lotus position here at my keyboard and type what I believe is the truth: Ingesting Verapamil was intrinsically involved in morphing this episodic sufferer to chronic. As a side note.... I detoxed from all medications one year ago (started mushroom tea/ rc seed therapy; last dose Feb. 1st) and continue to use only 02 as needed. I am virtually pain free but certainly aware that my nervous system is not completely quieted down. The other systems (sinus, arterial, venous) will remain fairly calm if I'm quick to act with 02. Autonomic aborts!!!! It's taken me a year to be able to do that....which brings me to the last thing I wanted to agree wholeheartedly within this thread..... Possibly due to the "drive-thru" society we've evolved into being. Which is very difficult to "check out" of even with this disorder! I recall a neurologist who prescribed lithium to me in the 80's saying..."It may take several weeks to get to therapeutic levels". I somehow understood subconsciously that his advice was sage just not to be applied with lithium ingestion!!! Salute to Beavers, Ducks and Healthy HPA axis's! And of course......HAPPY BICYCLE DAY! Cindy
  10. 2 1/2 year chronic, been busting for 8 months with one stretch of 49 pf days & nights achieved during the course of busting. And many, many 3-10 days & night stretches within the busting period. Like Bobw has said to me over and over...."We're going for 100% PF" so I continue Once I discontinued the traditional medications back in May of 2010, I've used maxalt twice when I just was, well you know....at my proverbial wits end! Proud of this BTW 02 as an abortive, ice, vitamin supplements and of course Juanita Valdeez I found the Licorice (Glycyrrhiza glabra) root & stolen tincture in a 1:2 ratio with a 19%-29% certified organic grain alcohol. I used a dropper full twice per day for 10 days. Also added the skullcap you mentioned in an early post. I felt as though the shadowing effect was increasing during these 10 days....but I'm also very aware of the increasing shadowing effect being mutually exclusive of the tincture, but still am soooooo not interested in "experiencing" the shadows to any degree. I may not have given it enough time (insert "gets worse before it gets better theory") but knowing that I'm just teetering in the limbo-land of busted/not quite busted, I decided to set the tincture aside and go with a 60 rc seed dose. I am very grateful for your posts, your knowledge and your ability to share in laypersons terms the very complicated and importance of a healthy well-balanced HPA. Cindy Â
  11. This is why I love this place and just wanted you to know that Bejeeber!
  12. interesting, hmmmmm.... The neck pain (for me) has come post-dosing and is new to this classic ch sufferer.
  13. See for me Les, the wonderful phraseology of your post combined with the subject title was the hook..... .....and then the bonus was what you recommended. I had a wonderful mother who spent hours at the health food stores reading and researching tinctures in my 1993 cycle. It was the first cycle to really go "rogue" and out of character in many ways. Tripled in it's staying power for sure!!! I remember a ginger tincture, under the tongue that just burned like hell! LOL It's her love I recall the most. So for me, reading a post about a tincture conjures up some bitter sweet memories (and I know my mother would have jumped for joy saying, "Lets go, lets go.....we need to give this a try!" Thanks for the message. Cindy
  14. Paternal Uncle definite sufferer....Paternal Grandmother severe headaches (I remember watching her cry and taking amitriptalene as a preventative. We need research dollars to continue to answer these questions! If it is genetic, I'd sure like to know (before I croak) my descendants could readily get BOL prescribed! hugs!
  15. I'm in on the early RSVP too! Mick and I will be there! Before and After plans in the making too???? Hope so Can't wait to meet more of the B.P.O.E!!!!
  16. Hi All~ Angel it is so nice to read that your hubby has added some life style changes that can only be beneficial! I loved to have my beers before all of this began (chronic stuff)! In my past cycles (episodic) I knew that alcohol was a trigger (before internet!!) so I'd table the beer drinking until after I was pain free. Episodic cycles were 3-5 months, but they would end with 2-9 years pain free after that Chronic sucks! Dan do you TAKE YOUR MEDICATION regularly now? I am trying to figure out what is working for others.....my 49 pain free time was wonderful But alas, I'm back to battling and feel all the PTSD test answers "When in Cycle" throughout my soul hugs and pf wishes
  17. Hi Angel, How's hubby? I didn't check to see if you've posted on another thread lately and have my fingers crossed that you're hubby is having more & more pf time. Hope so
  18. Well I feel silly..... I thought I'd downloaded this awesome search tool months ago and that it was working it's magic behind the scenes! Lol I forgot the last step. Complete all the steps until you actually see iGive toolbar (Clusterbusters, Inc shows up as a tab once completed)
  19. I had a flight hit in July (flying to Atlanta). But thanks to my buddies in Atlanta the return flight went PF (SPUTs) worked like magic. I just Gotta say thanks again for that help!!!!! :)
  20. I notice a real aversion to the taste of a cigarette "during dosing".... I'd be a guinea pig for that one too!
  21. After CGRP antagonists, 5-HT1F agonists are the second class of substance to prove that migraine attacks can be treated with a drug that has no vascular activity. This is the line I found to be so interesting....I have often wondered if the "body" doesn't throw in the vasodihalation as sort of an after thought or a response to what it perceives "must be occurring" when the pain center receives the pain messages. Which I have read, has been proven in CH. Pain first, vasodilation second. Very interesting and thanks for posting cluster
  22. Hi Angel & Hubby I'm popping in to share a bit of my own experience (that seems to fit in with what your hubby is experiencing). I started a chronic cycle in May of 08. Used the traditional medications up until May of this year (Mother's Day in fact To bust, I started out with the mushies, 1.5 g wait as long as I could and dose again. The process seemed to be going well until about July when (just like you describe in your post) all hell broke loose and it was non-stop BOP for days and days! You know, it just about killed me mentally! The thoughts get all twisted up inside you, I was devastated thinking "I'm the poor soul that this treatment DOESN'T work for! It's the worst of the worst spots to be in in my mind. I was in constant contact with several of the folks on the boards. I too used something called promethezine (anti-nausea med) during the NON STOP BOP days to get relief. I also tried SPUTs (small pieces under tongue) of mushies at the onset of an attack. The 02 continued to work, but the hits came so fast and so strong, darkest 2 weeks I've ever known! And it raged!!!!!! I'm sure I would do it all again, but just can't believe how intense those post dosing hits can be. For me, all the posts I'd read about this activity never really sunk in until I was in the throws of the busting battle. Today reading through MJ's post (and yours too) I know I would try the taper approach to keep the receptor doors closed. I was 2 full years into a chronic situation and believe that my body was fighting against changes I was introducing into my system. It was like several battles were going on all at once....if that makes sense. I damn sure hated my experience, but by August the days between attacks got longer and longer. My last dose was Sept. 7th and I've been PF ever since. 42 days now! I pray that your husband stick with dosing, you've come so far! Hugs, Cindy
  23. Thank you sweetie.....m e thinks it's m e HOT FLASHES
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