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spiny

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Everything posted by spiny

  1. 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.
  2. 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
  3. 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
  4. 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!
  5. 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.
  6. 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
  7. 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-)
  8. 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.
  9. Done. Too many are oblivious to our shared pain.
  10. 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
  11. 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!
  12. 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!
  13. spiny

    Melatonin

    What brand has the right mix? Mine just says Melatonin, B-6 and fillers. Thanks spiny who is OVER the flu ;D
  14. 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
  15. 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-)
  16. 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
  17. 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
  18. spiny

    D3 Update

    Can't ya'll get the 'burpless' kind? No burps with those, but they are rather huge. Kind of like a fat, short, Gummy Worm.
  19. spiny

    Food

    How do you guys EAT when you are going thru this? I am having a hell of a time - don't want to eat - nothing sounds good - my appetite is down to zero. In addition, I need to eat for my head, right? I have taken Magesterol (Megase) in the past for this, but now I don't want to take anything that might mess me up more. Taking the D3 regime (?) has helped. I can even snap out a good one liner and do math, rather complicated math, in my head again!!!!!! 8-) Taking the Calcium midday with juice has helped I think. Any ideas appreciated. By the way, we have one pizza place and two burger pl
  20. spiny

    Nat Geo

    Yep. I got the part where it was in Germany and the poor man on the floor was Martin Crouse I think. Thanks Many thanks AO! 8-) spiny
  21. Ah, tried it ONCE. Total disaster. :'( spiny
  22. spiny

    Nat Geo

    I got to watch part of the segment on LSD today and the 5 out of 6 who got relief from it!!!!!!! I bet I could order a copy from them. Money is money. I fell asleep. Also, I found it by accident and missed the beginning. But, my husband did get to see the man with the high pain CH. Guess I don't look as weird to him now. Any input here? spiny
  23. spiny

    SHHHHHHhhh

    AO, It is also a good idea to get a blood pressure cuff for home use as this stuff lowers blood pressure. That is why I can't take a higher dose. Also, do it right. Sit, take ten deep breaths and then start - that gives you a better idea of your sleeping BP. You might be really surprised at your reading. I was. I too have read about the ER not being as good for us. I am sorry it did not work for you after the ER series. I haven't decided whether to ask for a change or not. It also allows for a higher dose in the evening to help more thru the night. From what you say, I will re-consider c
  24. I'm reading. And waiting for more input. Everyone should jump on the bandwagon and help us 'new to the forum' CHer's. I bet that I am not the only one who needs and would appreciate it. Been in my hole, all alone, because no one else has these and can't fathom the pain and dis-ability we suffer with them. If not for my husband, I would have said Ciao some years ago. spiny
  25. spiny

    SHHHHHHhhh

    Thank You Lieutenant2, I'm not up for anymore pills and do not intend to return to the Idiots office. spiny who has had a pretty good day
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