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Everything posted by spiny

  1. Javier, Can he get O2 prescribed for his CH? With a proper mask and proper breathing techniques the relief is miraculous. If energy drinks are out (taste,stomach issues), coffee works quite well too. Add all the cream and sugar you want. These two things will help a lot with shadowing, especially when used at the very beginning of the attack. In addition, many of the nasty drugs should be off limits due to his age. Many are not approved for use in patients under 18 and for good reason. As for alternative medicine used by many here, we will have to wait for them to post for you. My heart goes out to him and his family. Being a teen is bad enough without the beast in the middle. Wish I could be more helpful. spiny
  2. Salander, I went to your site clicked on join and don't know what it did after that. Just says 'cancel'. What else do I need to do, if anything? thanks! spiny
  3. bounty, Yes. As an episodic, I understand your denial. Out of head out of mind. : Being prepared to head off a cycle is a great way to insure a quiet fall or winter. What ever you can get first, as the saying goes, will be the best. Weather: It affects a lot of us. The barometric pressure drops and we get hit. So yes, weather is an issue. Rising pressure is good , for me, while dropping pressure is bad. Therefore, flying is bad, my mountain is good except when I have to go off it into the flatlands and back up the mountain. Up=falling baro. and bad. For many of us, not just you or me. You are not alone with this one. So, keep the barometer in mind. Some days the rogue hit will remind me to watch the barometer and act accordingly. If a weather front is moving in, be prepared. 8-) IE: Have your O2 ready and energy drinks or coffee. Rogue doesn't mean cycle, but I find it to be a warning. Glad you logged in so we can show you how great this community is at supporting fellow CHer's You can bust a current cycle and you can prevent a future cycle with this method. Preventative methods sure beat killing a full blown cycle. Easier and faster. They both beat toxic meds that we think are working only to find out that the dragon was out to lunch for 4-5 months! All the best! spiny
  4. spiny

    3 Weeks

    Congrats! :) Remember your headache log from last year? I do. You have made really great strides in PF time!!!! Keep On Trucking Renee. 8-)
  5. Not aware of any nice guide to detoxing from meds. Perhaps the PDR (Physicians Desk Reference) would be a good source. It lists medications, their uses, etc. Good Luck!
  6. Most drugs that I have Googled will have a statement regarding 'tapering' off certain meds. You can go to the Mayo Clinic site or NIH and one or both should give that info. What drugs are you detoxing from? Folks here know many of them and if a taper is needed. You can also ask your Neuro. When mine were filled, the enclosed flyer would state if a taper was needed/mandatory.
  7. spiny


    You may need a bridge. Social Security used to have a program where you could work x amount and not loose your benefits. Perhaps check out how that works. I would like the idea of still having my benefits if the job turned out to have a negative impact on my health. Less anxiety. Good luck
  8. THMH Where did you get the seeds from? I have tried to grow Mexican Christmas vine and nothing came up. 25 were planted! > Course, after a few years the source might be forgotten. thanks!
  9. Psiloscribe I know you are busy now with the Vegas trip right now. I am eagerly awaiting the expanded coverage of SAMHSA and hope to see it posted soon. As in when the next event is over and a happy memory! thanks for all your work! spiny
  10. Magic is Magic, no matter how you slice it. 8-)
  11. Ya can't grow flowers either. They would have been pretty.
  12. spiny


    Whooli You are very fortunate for that connection! 8-) It is a very powerless feeling. Like they don't care if you live or die as long as you don't die on their watch. Just to let you know, I have had all the tests- MRI MRA CT of my head. Sucks when they draw blood for a test in the ER and then cruise off saying nothing. Then when you trap someone in the hall and ask they inform you (after giving you a muscle relaxant for a 24 hr CH) it will be an hour for the results. I went home. > Thank the powers that be for O2 and alt. medicine. 8-)
  13. spiny


    Whooli, Have you found out when your consult about the cyber knife is yet? Thinking about you.
  14. I have seen iamshaman recommended by several people on the board. On the Melatonin: Some say to stop it 5 days before dosing. But, it could help for the rest of the time you are stopping the meds. All the best!
  15. spiny

    CH history

    Cool. But really expensive and don't try to read it with a headache! Thanks Shocked.
  16. Salander, There are too many variables in the equation. As in you take a maintenance dose every month or three months. If you dose every three months and you normally cycle every six months then the same dose may work at three months and fail at six months. Or, you dose monthly and for five months it 'works' but on month six it fails. What failed? Don't know. Perhaps the dragon was just sleeping for five months and then woke up. > Sort of like your Verap worked for nine months but now you are ramping up for a cycle and it is not working. Did it really work for nine months or was the dragon asleep? Don't know. Why? Because the beast morphs based on many conditions or no conditions. And he does not put a 'Do Not Disturb' note on the door when sleeping. I have thought stuff was working, only to have it fail miserably in the end. Nature of the beast. The Hypo does many things as I recall. The histamine dump wakes you by warming you for wake-up time. Don't remember where the dump is directed from. Check the Licorice Root protocol if it is still here. It explains a lot. The way I look at it the Hypo just has a fit. The Trigeminal Nerve gets in the act and you are off to Painville. Some get night-time hits and some days only. WHY? Don't know. Your best bet is it to try both ways yourself and see if you can discern a difference. This will require a lot of time, due to the nature of the beast, and recording of results to get a viable answer for you. Your answer might be 'you' specific as well. I don't think it matters. But that is my experience not others.
  17. Salander, Good question. But I don't have the answer. Many take seeds and just go to sleep. They still benefit from the med and apparently don't need to stay up until it is eating time or something.
  18. Joshua, You might want to add Melatonin to your arsenal. It helps a lot of us. Seems that with active CH, the levels of Melatonin drop. The path seems long and scary at the beginning. Of course, as you walk it gets shorter and less scary. Good luck.
  19. heilette, I work for the same employer! Isn't she the one who says "Fine, take an hour off but you have to work two hours later to make up for it!"???? Is your Raynauds primary or secondary? I have taken some of the drugs given for secondary Raynauds for CH. They seem to work, for a while. But then, in the end, they fail and the dragon still has his way!!
  20. spiny


    lynn, Isn't it sort of like when someone finds out you are going to have a C-section and then they tell you how so and so's C-section went to $hit? Or 'General anesthesia is great unless the anesthesiologist is a junky and already took 50% of your medicine'! I am glad for her positive outcome, but I understand Whooli's point. He just got diagnosed and is dealing with a lot. He is in THE MIDDLE of this test wise, decision wise, future wise etc. He has a wife. He has been through a lot while getting his Graduate Degree. He is faced with tough decisions while in horrible pain. To hear that your sister survived 'against the odds' is not encouraging. peace
  21. spiny


    Jeeez!!!!!!!!! Some people have NO COMMON SENSE. > > Glad to hear from you! I have been wondering how you were getting along and what you had found out. Keep us posted and keep that smile on your face, ok? All the Best Whooli. I would blow off the diet too. ;D
  22. All government officials should have to live by the mandates they force on us. but, they exempt themselves from everything from the Health Care Law to insider trading! >
  23. That alone would make it valuable! But, which one is best: caps or powder? And which was used for CH? Salander, did it say which form or mixture was used? Thanks!
  24. k-bo, On the left side of this page is a Menu bar in black. Click on the O2 option. It will give you a big page of info on using the O2 for maximum effectiveness. The big part that I have found helpful is about fully emptying your lungs of the CO2 and then breath in deeply. Repeat. I hyperventilate at first, a bit fast and hard to fully empty my lungs. Then, as the pain recedes I dial down the flow to match my breathing. Most important, stay on it for the length of time it took to kill it. Five minutes or 100 breaths to kill it means stay there breathing comfortably for that 5 minutes after it is gone. That part can get annoying, but it beats getting hit again in 10 minutes, which is what will happen to me. In the beginning I didn't do that part, so the O2 did not work as anticipated. Costwise you can save by using Welding O2. No script needed and less expensive. If that route is desired, let us know and we can help you locate the needed equipment. Also, additional stress will adversely affect some clusters. On the other hand, lack of stress will not make them go away. Sorry for your current situation. Separation and divorce are hard all around. Don't worry about not posting during the good times. Many don't and that is ok. all the best
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