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Everything posted by spiny

  1. Supercalifragilisticexpialidosis Absolutely wonderful news, all around! I am so happy for you and her. Sounds like one all around pain relief for you and her. Must be the Equinox working some magic. You must have fed the faeries GOOD stuff this time!!!! [smiley=2vrolijk_08.gif] [smiley=tekst-toppie.gif]
  2. The mask is CHEAP and can be bought from sister site Clusterheadaches.com. About 28.00 and they ship immediately! 8-) 8-) Go for it. You will be rocking by the weekend most likely.
  3. spiny

    Legal fund

    Sounds like the solution has been found. Now, can we move on this? We have some donations pending and should put them to good use. 8-)
  4. Around here it is called "Prayer for Judgement". : That means that if you stay clean and out of trouble for a year, it goes away forever. Might be worth checking out.
  5. Brad, Sounds like a good Dr in your corner! Mine has just gotten to where he listens to me and all because I told him I joined a Cluster Headache Site and was in contact with literally 100's of people with this affliction! 8-) Mind you, that is more sufferers than he will see in his whole career! All the best spiny
  6. Linda, You are welcome. Jeebs is best for info on busting. Most meds suck over the long haul. Pred is a big offender. Weight, as you found out and hip and shoulder joint deterioration too. However, O2 at 25LPM is a life saver. 8-) 8-) You didn't mention using it, so here goes. You also need a non-rebreather mask. You can use a welding set-up and use its' regulator, just open it enough to keep up with your breathing and turn it down as you need less. Hyperventilate at first until the pain recedes considerably. By that I mean exhale WITH FORCE and inhale WITH FORCE. Repeat. Focus on your breathing, pulling your diaphragm down with each breath. I picture a beach ball for my lungs and expand and contract to that visual. When the pain allows, breath normally. CONTINUE WITH THE O2 FOR AS LONG AS IT TOOK TO KILL THE PAIN. Don't go 'Yea!!! It's gone" and stop. If it took 5 minutes or 60 breaths to kill it, go that long again. Otherwise, you may (probably) will setting up for another hit in short order. Without O2 and family and forum support, I would have given up in December. In short, as you will learn here, most members get by with vitamins and O2. These two things provide them with more PF time than all meds previously taken. Without the hellacious side effects. The only thing I can add to Jeebs great post is that benadryl and I think Skullcap can help with any anxiety from taking the meds. Maybe Skullcap is for nausea? Someone will correct my error. spiny
  7. I'm with BB. Info needed to make a determination . I don't mind sharing my little story, but I would like to know where it is going, etc. I think it is vital that we get the point across that this is a family issue that has torn apart many families over the years. In addition, it is vital to let others know of the physical damage many have suffered due to the meds prescribed. Larry should supply more information for us to make a decision. spiny
  8. Mine had a cardiac when I told him I was huffing welding O2 at 25LPM! But, he was open to listening when I told him that I had joined a Cluster Headache Site and was talking about what prescribed meds worked and what did not and ALL the side effects from these sucky meds! Even gave me a list of possible meds to try next to present to the board for feedback. He actually seemed to be glad that I had reached out and contacted a whole community of fellow sufferers and didn't feel so isolated anymore. It probably took some of the heat off for him as well. He treats many neurological diseases, not just headaches, so his expertise is not at 100% (if there is such a thing) in the CH department. Baby steps for him and me seem to be working well. Besides, he did save my life from carbarzipine (sp?) toxicity several years ago.
  9. Linda: What Jeebs said! My mother and son have migraines. Otherwise, no headache issues from grandparents forward. But, mine started exactly 3 months after a traumatic injury to the left side of my face that chipped my jaw among other things. The concussion knocked me out for about 20 minutes. I am not convinced that trauma is a major cause of CH, but it seems to have had an affect in my case. Neuro's at the time said that the 3 month onset was consistent with headaches caused by trauma.
  10. spiny

    am I chronic?

    My understanding is that you pretty much have to figure out what works for you. Alternate, up the dose, stay with one? I'm not the best member to advise on this, but reading a lot here in the past few months has led me to the understanding that it is a highly individual process. Someone who is better at this aspect will be here soon to help. 8-)
  11. Such good news! [smiley=2vrolijk_08.gif] Now, the lecture: O2, O2, O2. You can stop it in its' tracks with caffeine and O2. Wouldn't that be lovely? Won't kill the cycle, but definitely gives you a measure of control over the pain. : PFDAN 8-) 8-)
  12. Sundown: Omega-3 1200mg & B Super Maxi 1000% of B's and 100% Folic Acid Nature Made: 550mg Potassium Gluconate Spring Valley: D-3 1000IU Citracal: Calcium, magnesium + D 1200mg (this one does not have the zinc and whatever the other mineral was in it) Glass of OJ. I plan to start back on everything but the D3 next week. The Spring Valley was a different brand from what I started with on D-3, just what was available. I tried going down to 5000/day, but it didn't help. So, I just quit at that point. I don't understand it either Jeebs. But, desperate times and all that. : Currently having lunch with a second BEER! [smiley=2vrolijk_08.gif] That means I am now into my second 6 pack since Sept 2011!!! Gonna gain a pound.
  13. D3: My last lab in August of 2010 showed D, 25-hydroxy at 31.1. That was after working in multiple gardens since May. HDL at 67 and LDL at 132. Hemoglobin A1c at 6.1 So, I started the D3 in November I think. Perhaps the first of December. New tests: D 25-hydroxy at 101, HDL at 74 and LDL at 113. Hemoglobin at 5.7. So cholesterol down, good cholesterol up, D 25-hydroxy up and Hemoglobin down. However, my tongue has been raw for months now. Makes food choices limited and most taste awful! I stopped the D on March 20th. Three days later, the rawness was gone and has only reappeared in minor form once. While this could be a good approach, it did not help my head at all. I gave it a several month test. Someone posted elsewhere that the D3 made them nauseated and their tongue was sore. Warnings do not list the tongue thing as a bad side affect, like being nauseated. But, I decided to quit to see the results. I have been basically PF since I STOPPED! Go figure. At least the cholesterol is better and the diabetes thing of Hemoglobin is down too. Perhaps starvation is a good thing? >
  14. spiny

    tune for you

    8-) Now, I am hooked Ricardo. Bookmarked and ready to download! Thank you for the link.
  15. Ah, Crystal has only been here for a few days and was diagnosed less than two weeks ago. She is relaying the personal info she has. That does not make her a 'mild' sufferer or anything else negative. She is new. Ricardo, I support your efforts to make everything 100% up to date and correct. You have done a ton of research. You are a font of knowledge. Also, you come off as much more of a jerk than my limited experience PMing showed you to be. I read your posts and make an effort to reply when I feel I have something to contribute or learn something new. I am sure that I am too 'chatty' for some and too dense for some and suffer too mildly for some. Oh well. Such is life. I am here. I left another board because of critics complaining that I did not put spaces between paragraphs in my FIRST post. Let's not criticize so much. Let's support more and teach more. Especially for new members. They don't know us and we don't know them. But, we do know their pain, family issues, Dr issues, and the rest of this $hit. We do know how to help them so lets just do that. Now, where is my beer?
  16. spiny

    am I chronic?

    I read somewhere to cut them in 1/2 lengthwise prior to drying. Not sure that one makes any sense. :-?
  17. How in the hell was he supposed to 'relax' in that condition. > Jeez, the dumbass things docs and do.
  18. Jeff: back flips We are ready to watch that video when ya do it!
  19. Jeebs:Â 8-) 8-) Crystal: Coffee and Energy drinks (if you can hack them). I bet you will still sleep in 30 minutes or so after slamming one. Take it when the hit STARTS!!!!!! Just like the O2, the sooner you get it the faster you get rid of the dragon. And the lower a Kip you have to deal with. 8-) See how much better you are this evening? Even after last night? Keep marching and you will WIN.
  20. Gotta love that 'sinus infection' thing. Had the surgery for it about 15 years ago. Doesn't help. > Nor did straightening my septum. GP will always go for the sinus thing, in my experience. YES!!!!!!!! MSG is a trigger for some. Avoid it like the plague. Or, if you are feeling adventurous, try it again and prove it is a trigger for you. Me. I would 'run away, run away'. Keep me in mind for the simple chart thing. 8-) Poop, now I will have to get Microsoft Office again.
  21. ;D ;D ;D AWESOME!! Yes, hyperventilate while the pain is intense. As it recedes, you can and should resume normal breathing.Focus on your breathing at first: Big exhale - hard, Big inhale. Repeat. It seems to offer the quickest relief for me and some others. You want to get rid of the CO2. The main reason for the 25LPM is to support this type of breathing when your are in extreme pain. If you can't get a script ASAP, go for the welding set-up. Many of us use it. Cheap and no Dr hassle over the 25LPM. You are doing GREAT Crystal. With the neck pain, which really can make life hell all by itself, perhaps you can get a muscle relaxant for bedtime only. It can help a lot. Also, massage, heat, and finding that stupid 'sweet spot' of comfort. During high cycle, my neck pain is a constant killer: can't look left at all, or up or down. It will not massage out easily either. One other suggestion. I do not sleep on my CH side when in cycle. It will set one off. I have learned to use the other side or back sleep with the pillow on edge to prevent rolling in my sleep to wake the dragon. Might help. Oh, they tried anti-psychotics for my neck pain. Total waste. Nothing like an hour of 'getting something done' to brighten your day. May you have many more bright days ahead. You have a PM. Log in and you will see if you have any new messages at the top of the screen where it says 'welcome'. Oops, I think you found it! 8-)
  22. Read the links re busting and detox. Your answers are there! Never give up your O2. It will remain your friend, no matter what.
  23. Didn't Pixie say that it worked for her? From my limited reading here, she is not the only one to see improvement in migraines.
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