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Everything posted by 1961mom

  1. oh, and about the PG part......I thought I was a bit too bold with that question myself! Lol If you keep a journal....maybe you could begin to send the messages you need to send for help (universe help) to notice patterns in your cycles. All cycles together. Include your periods (start/intensity/end), your dosing times, seasonal times, etc. Could be helpful to see optimum time to try and it would be a little something that brings you long term joy at the end of the process to hold dear and to share. Even if it takes 2 years. Hugs Tingeling.... I always wanted a Logan to go with my Luke. It was fulfilling a wonderful part of my soul, to dream about another child.
  2. Ting, I like that raquelinkansas! So sweet just like tingeling! My pregnancy was CH free (thank God). Episodic days during that period of time (20 years ago, tomorrow!) Just celebrated my sons bday tonight! Thinking back and retelling the birth story is sort of a bday tradition for us. Where we lived, what I did the night before (long, long hike in the neighborhood he just moved into with his college roomies!!! very cool that this thread is going now) My first cycle after my son was born came 16 months later and it was HELL. During the 80's I would go to the ER for the really bad 9-10's, but didn't seem to live in FEAR of another. I honestly did not pay attention to the "timing" or "pattern" aspect even though there was a pattern in retrospect. I called them "eye-aches" and got pretty uppity if someone called it a headache! After Luke came, my memory of the cycles increases and I think its directly related to the prescription medications that I started taking believing by taking what the good doctor gave me would make this go away faster but really it was like they were prolonged and more painful. Does that make sense...... When I was 15 and having an attack, my mom gave me a tylenol about 10 minutes before this one particular attack was already scheduled to end. I thought it was the tylenol that ended the attack (just an association). I therefore refused advil saying nothing works except tylonel during that first cycle. That cracks me up now! For the next 15 years I was employed but uninsured. It took me longer to pay off the damn neurologist than a cycle would last. I know I had some bad attacks during these years (not entire cycles tho), it's just interesting to me now that I don't remember them as clearly as the bad cycles after Luke was born. It's like it went from just one or two really bad attacks (pre pregnancy) to 4 or 5 months of a horrible cycle (post pregnancy)!!! I don't associate it with the actual pregnancy though, I associated it with the new life I was responsible for. I think I realized my son was dependent upon me being well and toughing it out for a few weeks wasn't an option anymore. Not now that I had health insurance and so I went regularly to the neurologist, filled my lithium prescription, my prednisone prescription and my maxalt, sansert, ergotomine, cafergot, etc! Thinking (like the tylenol) this would help. They got worse, the attacks were longer, more severe, the duration of the cycle seemed to go on & on & on...... I've recently started to put this whole thing into perspective and it makes me sad....it makes me sad because I believe that the medical professionals really do think they are helping our condition at the moment they are prescribing these meds to us. That's sad, isn't it? I think so. That's why I shared with my neuro about mushrooms! So happy to just share......with you, with my neuro, with anyone who will listen! hugs
  3. Wow Kaboom! Even though I've lived the cluster headache parallel life with pretty much the same experience (insert son, not daughters. Insert balcony not street. Insert video games not movies!) it's still very moving and emotional to read. Your daughters are also angels. I think we all have some pretty terrific off-spring! In a way they develop a keener sense of empathy for all human beings, I would think. I know my son is genuine in his empathy. His room mates have all taken me aside when he's not aware to say that he has told them in great detail about my headaches, how I treat them and what the attacks entail. I am always moved to practically tears! He is my AWARENESS BILLBOARD on campus! And like you kaboom, my bestest of the best sitter!
  4. Well hopefully (we can change that) and there will be one..... 2 Bromo LSD !!!!!
  5. Hello Frozen1 and Welcome! I'm not very familiar with the dry weights vs fresh, but I am super familiar with verapamil, breakthrough hits on verapamil, weaning off of verapamil, getting absolutely slammed for trying to do so and then getting right back up to 720 mg per day of verapamil. I would even tack on another 120 mg (er) at bedtime many nights out of fear because these hits seemed to me to be the most nightmarish hits I had ever encountered in my 33 years CH history. I'm just curious....how long have you been taking verapamil and what's your dosage? And do you use 02? I know most of your questions are about the effects of the mushrooms, dry weight vs fresh and my favorite...... because of course, being a CH sufferer means in NO WAY are you a lightweight! Your dose produced activity. Activity is a good sign and like Bob said this is fairly normal. If I were able to do my "weaning" from verapamil over (recta-vision is 20/20!) I believe I would've had an extra year of my life (w/o the yo-yo syndrome) and pain free!
  6. Actually it may have been a waste of a handful! From what I've read over & over here there's a theory about receptors, medications (shrooms or triptans) and timing. Others may be able to explain it better than I (I'm not scientifically inclined) but here's my attempt.... http://www.mykoweb.com/articles/MindManifestingMushrooms.html LOL
  7. Wonderful post Bob I have a 20 year old, Tingeling and know first hand the moment you considered she may be suffering from CH. This is a mothers worst nightmare. Has your daughter witnessed your attacks? I only ask because this experience (for me as a mom) added a deep psychological impact to my sons childhood. He's began to share only recently how this affected him, the things he thought of and what it all meant in his world. Like was he safe? Was I going to die? Who would take care of him? Very Scary stuff to our children. It's not anyone's fault as Bob said earlier, but it certainly does impact our children in ways other children may not necessarily be impacted. Let us know as soon as you know. We are all praying for her! ps Maybe we should write a childrens book dedicated to acknowledging the experience of what it's like to have a mommy or daddy with such mean and horrible headaches. xxoo
  8. Tingeling, honestly every single time I dye my hair, I've given this a huge consideration....."What if this is causing, worsening, triggering..etc." I just hate that I'm not a chemist!
  9. I'm a little slow..... Happy Belated Mr. Atlanta savior! Say Hi to Trudy for me too
  10. ps Dan great to read you're still PF and I learned about the delete button through you too! LOL
  11. Okay now I understand the lemonade references! Thanks for posting Bejeeber 8-)
  12. Oh wouldn't it be wonderful if this were true, I have a sister who suffers big time with fybro myalgia. Someone to dose with me? !!! LOL
  13. Hi there Dirk10 And Welcome! All the cost saving tips & tricks, not to mention time saving too are so great to be posted here. We never know when someone may be reading (in between attacks) with a old fashioned regular mask, getting no relief and WAHLAH.....an angel has posted a valuable tip! I sure hope you're getting relief too!
  14. Dearest, kindest, warmest Eddy, We (my husband, Mick & I) have shared our memory of your story soooo many times since we have returned home from the conference. We are filled with wonderful emotions both sad and ultimate happiness. This is one speech I wish I would have video taped but my darn arm got so tired, I quit taping!!! What I think is so meaningful to me is your love of God never diminished throughout the painful days and nights of the chronic years. That you openly shared with your clergyman the choices that you were facing and together with your family and your faith you moved forward with a treatment that may not be legal in man's eyes but discovered who's eyes are the most important in the end. That's a very loving thing to do! Hugs, Cindy
  15. Your post makes me think of all those silly beauty pageant responses to the question "And what would you do to change the world Miss Oregon?" "Oh, I just want Whirled Peas" Really? Cause I just want the legalization of ethenogens used successfully in the treatments of painful diseases like cancer, cluster headaches, etc! So happy you are back and equally sorry that you've been put through the legal wringer for being compassionate.
  16. Bonkers wasn't it just wild to meet another one of us! It's the prevailing sentiment at the conference. Denny I'm so glad you got to "spread the love" and got to visit this crew in SD. Damn the time flew by and we never really got to just visit. More pix? Hope so.
  17. Marsha....... I'm looking for a mad scientist! lol
  18. Dan's ability to captivate the room was priceless!!! Damn Dan you may have missed your calling....but then again maybe not!!! Mick really wanted to hear from you too Lee Ann. He came home formulating a speech for supporters! WAhooo!!! That is huge coming from him and what's even huger is that he meant it from the bottom of his heart! I can't wait to see what the years fund raising and research brings to us all for the next conference in Chicago. Having another sufferer come back to Eugene and stay with me until her flight back to Arizona (yesterday) was an experience for me on the side of the supporters. Witnessing her attacks made me feel helpless and of course more determined than ever to get more research. Weird, I had heard what that feeling was like from my husband, but I never "understood" it fully until now!!! WE are one tough, funny, thoughtful, caring, good-looking (just ask bobw) bunch!!!! hugs to everyone
  19. And Oregon (folks too) LOL O what a wonderful feeling, O what a wonderful day! I just have so much happiness in my heart today! Meeting all of you wonderful (fellow sufferers) and equally wonderful supporters was like being in Disneyland with only your friends, free for all!!! Eddy, I still laugh and cry so hard thinking of the speech you gave. My husband has a new understanding of our disorder and he really appreciated your candor. Of course Dan and Le Ann's speech was also enrapturing being equally sad (pre-cluster busters) and hopeful! So happy to have met SherrienAZ, Mastiflover, Galwin, Fungi, Darrel, and on and on! What a happy birthday I had!!!!!
  20. Wow Bob thank you for posting the Playboy article. I just finished reading it and (as you know) with my dads recent passing it couldn't have been more poignant. It filled me with a peace that I've been lacking.
  21. Welcome m9ndbent My vote is sort of musically tilted....watch an American Movie and just giggle at our accents! Put your order in now for your next dose It's the very best treatment I've ever used, but it is a treatment to be sure! Cindy
  22. I had a whole bunch of ears listening to my story over the fourth....asking questions, commenting, intrigued with the whole thing and all I was thinking about was "God, I wish I was one of them listening, commenting being intrigued." I'm with you Jay! This is one time I would truly rather be voyeur! Cindy ps After a 98% PF independence day, the bottle rockets exploded around the occipital bone below my right eye at about 1 am. This was excruciatingly painful, like the damn bone was literally shattering from the inside out. My wonderful 60 +/- days of busting shot to hell! I am back in detox mode!!!
  23. You move there David, I'll come visit during the Spring (maybe fall too!) Hope you're feeling well my friend!
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