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spiny

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Everything posted by spiny

  1. Curious to know how yours started. 40+ years ago, mine started on the left. Piercing pain for 15-30 minutes. Today, I would call it a Kip3-4. They would come daily almost. Primarily the ice pick type. Always one at bedtime. That is about all I can remember. Since my son has just started with the dragon, I was looking for input from you guys. It would help me to help him. thanks, spiny
  2. phwspsci, O2, if you don't have a script, can be bought. It will be welders O2. Many of us use it OFTEN with no ill effects. The tanks are rated by Cubic Feet. So a 90 holds 90 cf of O2. Personally, I keep a 90 and a 60. They both fit in my little car and I can manage them alone when they are empty. Don't tell your supplier it is for medical use. They can flip out and could refuse to sell it too you. If you buy the tank, you can have any dealer refill it. If you rent the tank, you have to take it to the company you are renting from. Tanks are about 100.00-200.00 depending on size and where you are. Having two keeps you from running out. 8-) You need the non-rebreather mask from our sister site Clusterheadaches.com. It is about 30.00. They are great and ship ASAP. You can locate and purchase a new regulator on line without a script. My 25LPM was 55.00. I suggest you get 25LPM at a minimum. When hit hard, you will most likely be hyperventilating from the pain and you want to continue to do that when you first hit the O2. As the pain recedes, you can lower the flow and breath normally to kill the attack off completely. 15LPM probably will not keep up if you are hyperventilating. If it took 5 minutes or 60 breaths to kill the hit, stay on for an additional 5 minutes or 60 breaths AFTER the pain is gone. This helps to prevent getting hit again in short order. Hope this helps. O2 is a LIFESAVER! :D :D
  3. Pixie, Hope this finds you doing well, home, and minimal or ZERO pain! :) Look forward to you 'derping' all over the place, from home, if that means all went well.
  4. Hey Lady, Doing pretty good here too. OOC on March 20th, after 7 months!!!! 8-) 8-) 8-) Still trying to get my 'body' back, ya know, like gaining back the 15 lbs I lost. ;D Like everyone, I am about 3 months behind on EVERYTHING. Glad your baby (I should say toddler) is better. Perhaps ya'll will find a good combo for him soon. Fingers crossed! Hugs and love your way!!!!!!
  5. MrsG, So glad to hear of your success!!! ;D ;D Go with what worked before. Hit while in the shadow stage so you can kill it with fewer treatments is my suggestion. Coffee: I drink as much as my stomach can stand. It helps that much. Never had a problem with too much coffee causing more CH. CH is going to do its' own thing. O2, O2, O2!!!!!!! How's the little one? I have wondered but figured you were busy and PF. I hope the diet has helped. spiny
  6. Unfortunately, after a few nights of 4-5 hits, REM starts within 10-15 minutes of falling asleep. > So, you may get a whopping 10 minutes of sleep before the next hit. As Brew said, you don't get any 'restorative' sleep. So, life sucks big time!!!!!!
  7. From what I read, most 'adverse' effects were exaggerated and sometimes unfounded. Sounds about right, considering the media hysteria.
  8. Kyle, I pray that we will have BOL or something better by the time your little one is in grade school. 8-) No trends or triggers. He doesn't smoke and doesn't drink while working 9 days on. So far, he has not had time off yet. But, Wednesday will be a schedule change. So, will see if that affects him. I think it is too early to tell anything yet. I really appreciate everyones' support. Just need to get a better grip on myself and not be such a miserable grump. :-[
  9. ALS In the WSJ: Frustrated ALS Patients Concoct Their Own Drug I don't think I would want to wait either! They have more than one article on this. Sounds familiar, doesn't it?
  10. Yikes. > You aren't supposed to wake up during the paralysis part! Ever done a sleep study? A good idea since you have apnea from what you said.
  11. spiny

    Worry?

    Yep, I call that kind of stuff 'STRESS RELIEF' 8-) 8-) Glad to hear that you got out and had a good time.
  12. Sorry Brew, I'm just in a really foul mood and I am sure that I missed the point you wanted to make. :-[
  13. Not a fluke. > > > He's keeping a diary of the hits. So far, short and unpredictable in their timing. Using the methods I gave him. Yea, I am in a bad place over this. At least I am not in cycle.Â
  14. spiny

    Worry?

    YES!!!!! > > Every time I go 10 miles from home. Whether I am in or out of cycle. How did the event go for you?
  15. So, BOL-148 is going to be tested in Germany and Austria. I posted their email to me regarding their progress the first week of April. Almost no interest or replies. Thanks to Dallas Denny for his reply. 8-) Therefore, don't bitch when it comes out for MIGRAINES and we get second billing. Sorta like Latisse. > Have fun, but don't bitch. spiny who is in a crappy mood In case ya don't know, every time they find a NEW use for a drug, their patent is extended. That keeps profits up. That is how they FUND it!!!!!! Lyrica was to go off patent YEARS ago and didn't, because of this. I should have just let this go by, but being 'ill', in the Southern sense, I didn't.
  16. latisse: My understanding is that it is a side affect of a drug for glaucoma. They found out it would grow your eyelashes and marketed it for that. It was an accidental discovery, not R&D for eyelashes. 'Latisse, was first approved in 2001 as a medical product to lower intraocular pressure in people with open-angle glaucoma or ocular hypertension.' This according to drugs.com. It was 8-10 years later that it was approved for eyelashes.
  17. spiny

    Grouchy?

    After being in cycle for several weeks, I loose patience with everyone outside of my family. > Life sucks so much, that I don't take kindly to strangers adding to the pile. I am so miserable that I no longer care what others think, so I will flip em off, tell them off, or walk/drive off myself. I got to the point that I just wanted to grab people by the neck and squeeze hard till their eyes popped out a good bit. Then ask "So, how do you feel now? Welcome to MY world, now go away." > On a return trip from the dentist in December, the woman in front of me on the mountain road was driving 10 below the limit. It is a 25 mile stretch of highway. She would not let me around. She slammed on her brakes TWICE to tick me off. I hit my brakes and stayed where I was. When we got to the one stop sign, she got out and yelled "You wanna get off my ass?" "Nope, but I would be happy to go around you!" Which she finally let me do!!!!!!!!!!!! Life is much better now, but I am so behind the eight ball I don't think I will catch up till some time in August.
  18. Try a supermarket. I know they might not be that common over there, but most likely or they could tell you where to locate some. Often, they are only stocked seasonally. Get 1/2 pint size with wide mouth. Then they could actually be used for jam in the future. Never buy small mouth jars. They suck.
  19. Brew, Glad the [smiley=vrolijk_1.gif] cat helped ya out! Good thing they travel in litters and multiply like fungus! ;D ;D That leaves a few for the rest of us.
  20. Having been one of the 'missed' females for years, I agree that most of us have a VERY hard time getting a diagnosis for CH. My experience in this area bears out what Jeebs said. Several dr's looked at me as 'Hysterical'!!! > Having said that, I will have to read these articles later. Thanks for putting them up for us.
  21. Thanks to ALL of you for your support and prayers. I will update later when I know how last night went for him. I feel prayers running through my mind and my house too. It is a good feeling and warms my heart. spiny
  22. Just got back from the bank. Manager wanted to talk to me. His father-in-law has Ch and my banker was in shock when my husband told him that is what I suffered from as well. Father-in-law gets 2 months worth every 18 months. Banker couldn't believe that I just finished a 7 month cycle. First thing he noticed was the weight loss. ;D Yea, it gets dramatic. But, his in-law looses 35lbs per cycle. Asked me about the nerve block, since that is next on their list. Then, told me that he had heard that the only thing that worked was Psychedelics!!!!!!! 8-) So, I clued him in about the board and sister site. Bet we get a new member. In-law is getting to the 'shove it' point with the docs. Said he will decide toot sweet whether they have any brains. 8-) Spreading the word, sharing the joy of our community. I feel like a good Faery Godmother, sort of.
  23. I desperately hope it IS just a fluke. Thanks to all of you for your support. I am totally devastated by this news today. > I have had these for 40 years now and that is enough for one family to bear. I would give anything to take his for him. After all, what would it matter if I had a few more and he had none?
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