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spiny

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Everything posted by spiny

  1. Very well done by Nat Geo. Dan, I suspect that anything would have gotten the 'slap' if it aided the dragon at that point! You and your wife and daughter were wonderful and incredibly brave. Thanks from my family and me. May this help our cause and bring us all relief. spiny who shall ask Duke University what happened to their planned program for Clusters several years ago!!
  2. Short story of my experience with GABA. I had about 3 PF days in Dec. That ceased on 12-27 or 28. I quit taking Lyrica and Melatonin which I used to take at night and started GABA. Two 750's at night. I had immediate relief. Even dreaming. Some days no shadows and others a few. Focus was very good and memory improved. I added B complex at night shortly after the GABA. Took a trip south from Jan 4-8. O2 stayed in the truck! Did not need it even once. 8-) Returned up the mountain with no CH. A weather front was moving in and NO CH. That never happens in cycle. Currently I take 3 12
  3. Renee, 100% success is a fallacy and should never be stated by a physician. Ain't no such thing. Sorry. As I am sure you know, both sexes have female and male hormones. Synthetics or otherwise can start migraines but stopping them won't make every ones migraines or clusters go away. Get your tests, but don't expect miracles.
  4. Indy, I am so glad you have the O2. It is a major miracle!!!!! Anthony, Yeah, know what you mean about being 'stuck' I have been getting a lot of shadows most days. Coffee helps me, if I remember to drink it at lunch and about 5-6pm. Can't do the energy drinks at all. Tooooooo sweet and I get nauseous right away. I have had constant sore neck, knot on the back of my noggin, and a 'swelling' feeling in my temple. Some folks use the O2 for those as well, but I can't hit the tank all the time so I try to cope with the coffee. Forgot it this pm and now there is the shadow again. My own f
  5. Neat! We all seem to have some different or similar feeling. The one that I am referring to is the one when you KNOW you are going to be able to sleep or rest or work in peace for a few hours, not minutes. Not when a cycle is over. I never know THAT either. Sometimes I KNOW that from the feeling inside my head. The transmitters my be located in the sclera or skin or somewhere else, but I feel it inside my skull. Unlike any other sensation that I have had from some activity or inactivity. The same as I feel the swelling and pressure of the Shadow for long periods of time, but there is no
  6. Well, my village does not have any to be found. The Health Vitamin Store is closed, probably till January 15th! Online, here I come.
  7. Weather change hit. I thought so with the 'little' one going on in my head. Yep, barometric is down and rain is here. Going to town (I really think it is a village!) to see what I can find. We have 2 Pharmacy's and one Health Food/Vitamin store. Maybe I will get lucky! Lt2, I have a lot of what you describe. The night time, after falling asleep 'furies' are the worst and boy, are they clock like. Meaning that they occur at very regular intervals ALL night! Not just one or two. Always at least four. Apparently REM is the trigger so I don't get any. Until today, I have been PF since 1:00AM
  8. Dude, that is one heckuva read! I admire your research.
  9. LT2, Thanks. I will look for some when I am out on the road today. REM usually sets me off. I will let you know how it goes. Right now, I am going to WIKI to take a look. Since I know my Beta waves are screwed, this could be a big bullet for me. Currently getting a small one, just burn and crawling around my temple. Not what I would call an issue, but would be at 2-3 on the KIP scale. Not something I normally would treat, but maybe I should.
  10. spiny

    Thanks Santa

    Another lovely PF night! Still cutting back on the Verapamil. Down to one Lyrica a day. Melatonin is down to 2-3 from 5 a night. Back to drinking coffee at noon and 6pm with no ill effects. No pain meds for a week plus. Doing D3 for over a month now. Going to start the GABA and delete another 80mg of Verapamil if going down the mountain doesn't kick it all back in again. Will also monitor the weather as dropping barometric pressure will kick the Dragon back to active for me. Todays dental visit will be a strong test. Have to go to the dentist and then 50 miles over and down to the den
  11. Not the normal post here, but I'm doing it anyway. Thursday and Friday of last week were horrible. PAIN and stress had taken over everything and I was running on the 'one raw nerve' left. I turned into the 'dive bombing Mockingbird' from hell everywhere I went. Pharmacy didn't have my script - I grumped rather loudly. :-? Idiot cut me off in traffic. Grocery didn't have my aspirin or Rye Bread. I started to boil. Then, they decided to no longer carry my dogs late night snack. That ripped it. > By the time I left I was a bad nut case and racing for home and the O2. I decided that tho
  12. Lt. 2, Is this something you need prescribed or can you get it on your own? I am discontinuing all the meds I can at this point: Progesterone, Lyrica, Verapamil. Two will remain: Singulair and Prylosec at prescription levels, not otc Where do I start research? What can you tell us online that you have already researched? For reasons stated earlier, I am VERY interested. The EEG was done when I first met the Dragon in my 20's. Lately, they don't seem to use it or place credence to results obtained from one. Merry Christmas! Stay PF and keep up the updates!
  13. Hello BP, I'm new here, but you came to the right place to get information and converse with people who KNOW how crippling this pain can be. The only suggestion that I can make is to up the O2. I use 25LPM to start and then 15 or 20LPM when I am no longer writhing in pain. The higher flow seems to be necessary for many, if not most. Since you already have a unit, can you get a regulator for 25 or 50LPM? Fifteen just seems a bit too low for good relief. Regulators can be bought over the Net for about $50.00 and no script needed. In my life, this will kill the Dragon at least for a while.
  14. Please keep updating. I will have to start from ground zero on this as I know nothing about GABA. But, I do know that I have 'unusual' brain wave patterns based on an EEG. Dr. couldn't figure it out, but he did mention they were Beta waves. Hmmmm
  15. Second that! I understand that Santa likes cheese too. I found a pile of rather rough sliced Cheddar and Merlo (SP?) on the hearth one year!!! Yum. Santa was good to the kids THAT year. 8-)
  16. I second Bejeeber on the bumper sticker. We could actually do this too! I will research the minimum number and cost. Going to have one made up anyway "Odie for President". 8-) The eager to please, drooling, anything you want dog in Garfield.
  17. Done. Too many are oblivious to our shared pain.
  18. If we could actually SAY we were out due to a headache and not risk being docked or let go, they would give a much better picture of the issue at the workplace! Frequently we have to resort to stomach bug or sinus infection as a cover and that sucks! > Our small numbers (CHers) make it almost certain that a med geared for us is not very likely to make it to market unless it helps migraine as well! > So, here's to BOL working for those heads as well. In my book, it will be amazing if we actually get something that was designed for us, not just a side-bar for Rx designed for something
  19. spiny

    Food

    Thanks Chad! I have O2 and have been on the D3, minus the calcium for 6 weeks now. I was on the calcium too, but the Verap I have is ER so the eight hour separation was impossible. Trying to get my idiot Dr. to change it to SR so I can put the calcium back. I will try your method. I just have to remember to keep high protein snacks in my pocket! Not always that smart. Still reading on the other. thanks and PF holiday and New Year to you!
  20. spiny

    Melatonin

    Thanks Bejeeber! On NIH and Wikipedia that is Melatonin apparently. :-[ I could not find the thread with the Latin name, what you gave me I believe!
  21. spiny

    Melatonin

    What brand has the right mix? Mine just says Melatonin, B-6 and fillers. Thanks spiny who is OVER the flu ;D
  22. when you are thru those constant series of CH's ? I seem to get about 4-8 in the evenings and at night. O2 helps for most, but then I just get to where the tank isn't doing it anymore for the series of the day. At that point, I hit the coffee (at 11pm or 1am, depending) and plan on sitting straight up for about 2 hours. Leaning back makes my neck hurt more and lying down will start everything all over again. But, I have noticed a very odd but pleasurable feeling. It is like my brain is relaxing and expanding. I can feel it fill my cranium from side to side again. 8-) Almost a relaxation
  23. spiny

    D3 Update

    Sundown Naturals No Burp 1400mg each. Works. No Burps. They are Enteric Coated. EPA=700mg DHA=280mg. How 1,400mg fish oil = 980mg of Omega-3 fatty acids I don't know. spiny Edit to add: No fish taste either. 8-)
  24. Hi Renee, Depends for me. Sometimes with high Kip which I would call a 10, I am very agitated. I have bent my headboard grabbing a couple of the metal rods and pulled one while pushing the other. Not bad for a shrimp. Others, I am frantically lightly touching my face with a cool washcloth to find the sweet spot of pain relief while the rest of me is in a frenzy waiting for the tub to get enough scalding water in for me to get in and rock. Then, you have the sit with the O2 and gently rock on the floor times too. This go around, my sinuses are so clogged on my CH side that I do not
  25. spiny

    Food

    Mystina, I actually tried that last night and managed 1/2 a sandwich made of their dinner. It did help. Usually I am finished after one bite of their dinner. I appreciate the rest of your advice as well. spiny
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