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Cassidy

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Everything posted by Cassidy

  1. Mystina, I think I messed up this thread, which was about alcohol being a trigger. When I am in cycle, one sip will bring on a bad hit. There has been a time or two that I got by with Bailey's and coffee. And there were a couple times hot, spicy tomato juice in beer. (bloody mary) Sort of an old Steve Martin thing, that went, "I never smoke before 7." and so on. I've decided I'd like to reschedule my Clusters late in life because they really do screw with a younger person, raising a family, working, and fun. Baseball games. (Hi David) I believe I will follow that girl from Norway and just go out and play in the snow. Leslie 8-)
  2. Do we have any info. of someone that actually out lived CH? I mean someone elderly, not a youngster that went into remission. I'm getting close to that elderly stage of life. ;D I was pushing a year of no cycles, just a couple rouge hits. Then the holidays came and I received a visitor that won't leave. Mentally I was really upset, because I thought this thing was over. I didn't even recognize that first night time hit and forgot how bad it could be. You wouldn't think you could forget, but you do. Oh well, maybe next year. Don't really care to break any records or be on the 6 oclock news because I passed as the oldest female with Cluster Headaches. My claim to fame. :Â Â Leslie
  3. Mystina I know many years ago, way before 9/11, if a passenger needed o2 on board, he would have to fill out a form advising the airline. Then he would be allowed to carry it on, the airline didn't provide it. The form was in triplicate. If it looks like a passenger is unable to take care of themselves, the airlines could insist that they not travel alone and must be accompanied by a medical person or friend. Any medication that you need on your trip should be in your carry on luggage. Checked bags get lost. So having said that, I would put some capsules together in a Benadryl bottle or have sputs handy. Also the little energy shots sound like a good idea. As far as arriving at the gate at the last minute for any reason, there is a good chance you won't get on the flight. Standby passengers are boarded 10 minutes before departure. So I would listen to Alley. If you have done sputs before, the .5 capsule has about the same results. I might lean toward the sput because it works faster sub-lingual. No reason why the capsule wouldn't work just as fast if you used it under the tongue. And yes, I would do a preventive dose a few days before flying away. Have a great trip, or flight. Leslie
  4. Brian, You seem to have explained the unexplainable. Very good. I have asked myself those same questions. I can never find the words, and I know there is no answer. Leslie
  5. CH Father, you are so right about that site being hard to wade through. Do you know why calcium citrate is recommended? And why not calcium carbonate? Is it related to stomach issues? Yan, Your employer doesn't allow sick days? You do have a serious condition, and I would think with proper letter from your Dr., the company would be understanding. If they fired you because of your medications, I'd think you'd have a law suit. But then I am a dreamer and expect common decency. I'm not able to function taking Topamax. I'd be a better employee using o2 vs. Topamax. Perhaps you could take a few days off to adjust to a change in treatment. I know easier said than done, but in the end it could help you so much. Best wishes Leslie
  6. Scott, I am scared of heat. Twice I've had trouble on road trips. We have been in 100 degree heat index for over a week now. If I am going any distance, I pack ice and frozen towels, just in case. Also travel with Red Thunder and plenty of water. Here at home, when I want to do yard work, I have a towel that I put ice cubes in and wrap around my neck and shoulders. When the ice has melted, I know it's time to go inside. If I can't get cooled down fast, I am in for a long, high level hit. I always have sputs with me also. The heat will get me even if I'm not in a cycle. Blasting the AC in the car, helps. But if the car has been in the sun a long time, it takes awhile to get cold. I don't sweat. No one has an answer for that. I've just accepted it as another thing connected to the hypothalamus. I've been thinking that there must be cooling vests for some sports and I've been going to check that out. I don't know about the health risk of cooling the core of the body and not the extremities. But, yes, heat is a trigger for me. Leslie ps this problem start exactly when I started getting CH. :-/
  7. A little late, but I tested left brain 18-0. Have only been hit on right side. For what it 's worth. Leslie
  8. Hi Ting, I'm back also. I didn't get to eat cake, but the guys caught lots of fish and the weather was great. We hit several detours on the way home. The Missouri (major river in the US) is flooding. We had to take some back roads as the interstate is closed in places and it will be worse as the week goes on. It will be bad all summer and very sad for many people. It's funny how we feel when separated from the CB board. I too, would think about something and realize that I could not post. Strange how we wonder about people that we have never met, but seem to know so well. Sorry to hear about your family situation. Take care and try to know your limits. It got warm up north and the pollen was bad, but no hits for me. Looks like I might skip the spring cycle again. Had a couple threats but cold water on my head and Red Bull chased them away. (head under faucet----drank Red Bull) I forgot to pack my CDs. Had tapes up there and traveled memory lane with "Marley Man", Neil Young, Bob Dylan, and of course the Grateful Dead. and others. Happy you are back. Neither one of us could have had these holidays without the magic of CB. Leslie 8-)
  9. I really want to go to Chicago. Do you have any money?
  10. I figured you would catch on to that. Think you have a pretty good memory for an old guy. That is a safe statement, beings we live 100s of miles apart. The rants are a side effect from CH. Just can't help it. But trying harder. :)Leslie
  11. You just ran into the problem. Most sleep aids are taken nightly. So on occasion doesn't quite work. It would be an interesting trial, and you never know. It could be the answer. I have to wonder about Ambein and Lunesta, I hear good reports but the price is high and there is an addiction possible. Why are the doctors more than happy to write a R/X for these drugs, but when it comes to Valium you run into a brick wall? A 30 day supply of 5 mg Valium is under $10. Yes, there is an addiction possible, but is it any worse than the new generation of sleep drugs? And if you compare side effects, the Valium seems the least harmful. I do have a R/X, but I have to see the Dr. every three months to get a refill. Also I can only get 30 tablets a month. They have total control over my use. So I really can't abuse. I had to try many antidepressants before anyone would believe me that they made me sick. Yes, I have depression, but there is no pill I can tolerate. Eight hours of sleep is the best medicine for me. If I sleep I can deal with the world the next day. I have to detox before dosing and have never had a problem with that. No DTs or seizures! I know there is someone on here that is saying "there she goes again, about mother's little helper." It just really sucks if you can't sleep, and I understand what the girl is going through. I realize you tried klonopin, almost the same as Valium, same family. How about Benadryl ? After that I could suggest MJ brownies, but that would be illegal. : Sorry about the rant, but I have to do that every now and then. Good luck Leslie
  12. Most homeopathic meds. are taken sublingual. They are usually such tiny amounts and are taken under the tongue, for fast relief. (absorbs fast) I'm not sure what the question is here, but I always carry sputs with me. Not RC, but mushrooms caps. This has saved me many times. I have had alcohol, when not in cycle and not expected a hit. On occasion the first sip will bring on a hit, which I can abort in a few minutes by using a sput. I have been in extreme heat, not in cycle, and gotten hit during rush hour traffic. One mushroom cap under the tongue and I have aborted the hit. I have not tried RC as a sput, but remember reading that someone did exactly that and it worked. As far as a sleeping aid, on a daily basis, I'm not so sure that would be a good idea. I would be concerned that my next dose wouldn't work as well. This is all my thinking, so take it for what it's worth. So what was the question? Leslie
  13. I am episodic. The only sign I have that a cycle is ending, is waking up after a no CH night. No signs. I get pangs or shadows out of cycle if exposed to a trigger. It returns when one night I wake up with that familiar pain. No warnings. My first was a "sinus" problem, so I thought. Not a hard core pattern. I treated my sinus or tension headaches with ice and caffeine until I just couldn't take it anymore. Then I went on the usual meds. Triptons, Topamax, beta blocker and some other stuff. I followed that program for about one year. I realized the cycles were more painful and more frequent. I quit doctoring. I started using tiny amounts of hallucinogenics about 6 years ago. My cycles are one or two a year and the pain level is fairly low. Also an attack lasts about 5 minutes rather than a hour. On occasion I still have a stubborn cycle. But I know it is just a reminder of what use to be. I personaly don't care for mega doses of anything. But that is me. Hope this helps answer your questions. Leslie
  14. Scott, If you have been taking Hydrocodone for only 2 weeks, I wouldn't think WD would be any problem. I'd probably take one in the morning and one at night. Or one a day until what you have is gone. Take it at the time of day when you might need it most. I had to take it for about a week. I ended up taking one at night the last 3 or 4 days with no problem. But I have heard, that everyone is differant. Leslie
  15. Hi Phil, Shadows are sort of a dull, nagging, long drawn out headache. Red Bull is good for getting rid of a pesky shadow. Sometimes, I just as soon have a full blown attack than deal with that constant nagging feeling. (maybe) Yes, you can order RC seeds from several places in the US. There are links to suppliers on that menu button in the upper left corner. You will get more information soon. Someone will come along and give better directions. How have you been treating your CH? Do you take meds.? Just hang in, you will get plenty of help. Leslie
  16. This is somewhat off topic, but It is a big thing these days to prescribe mega dose prescription vit. D2. I did that per Dr.'s orders. I got really sick and had to have blood work to check for toxicity. Meanwhile I take some vit. D3 and omega3 OTC. But not mega dose. I'm just saying maybe blood should be checked on occasion if you are doing mega doses of any vit. Leslie
  17. Cassidy

    tune for you

    Shocked, Thanks for posting the Times article. Very interesting, I have always felt this is true. Leslie
  18. That song and many others has helped me thru some very hard times. Actually the list is endless. It is special to share the times and emotions. Sad that the fans took a different direction, towards then end, before Jerry died. "Times they were a changin." later Leslie
  19. This could be my favorite hang out. Grateful Dead fans and cluster help. No, we did not do this to ourselves. I have stopped trying to find out why. It is what it is. I spent a lot of years wondering and it was a waste of time. Just find your treatment and don't look back. Leslie
  20. I probably took every tripton made, over a 9 month time. They worked fine for me. But it just lead to needing more and more, which isn't good. Dr. took me off of them and started the usual drugs, like Beta blockers, topamax and so on. As I used more R/Xs the CH became worse and worse. Found CH.com, which led to CB. With less than one year of RX treatment, I had a good response to busting. No second thoughts after 5 to 6 years later. Still have a couple cycles a year. Only one cycle last year. I do believe that busting is the healthiest way to go. I've been away for a bit and need to get caught up with the board. So I don't know your history, but wanted to answer your question about triptons. Leslie
  21. Stay strange -Eric "Only the Strange Remain"   (Mickey Hart/Grateful Dead)  Sorry, couldn't help myself. Song just kept playing in my head. 8-)           strange         Leslie
  22. I know using Frova or any other triptan made my CH hits more frequent, longer and more painful. And cycles came more often. So, in my case it did cause more attacks. I don't know if the terminology would be rebound. In my opinion rebound could have a different meaning . Hope this helps. Leslie
  23. Once again, I was trying to find the right words to reply to this post. But, Ron just said it all. Leslie
  24. Hi Tingeling, Our drinking water from the tap is treated with fluoride. (and other chemicals) I have always used tap water and lemon to soak my RC seeds and I don't believe it was any problem. Maybe the dose would be a little stronger, I don't know. I just forgot somewhere along the line that spring water or bottled water was recommended. I don't think it is a big deal with our water. I wouldn't be concerned over the water, don't think it is a big deal. Cheers Leslie
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