spiny

Lt2, Great to hear that you are doing so very well! 8-) spiny

Mystina, Good to hear from you!!!!! We do miss you. I hope you feel better very soon and have time to visit here more often. Kittens are wonderful company!!! Enjoy them. spiny

Cheers for a good nights sleep Red Dog! Slap backs should continue to get milder with each bust. I hope they do for you.

Fantastic!!!!!!!! 8-) Nothing like a miracle treatment to make life wonderful again is there? I am incredibly happy for ya b'man. [smiley=tekst-toppie.gif] [smiley=vrolijk_1.gif] My favorite smilies for success!

Awesome B'man!!!! Sounds familiar! I agree on the weather. I think it messes up some really good people trying to get to a better place and lets us who are usually in that better place know that the beast still lurks! Hopefully it will move on through and you will know even better relief. From your post and previous posts, it appears that the hits were less than the norm you have been experiencing. I certainly hope so!!! Pulling for you birdman.

birdman, You are doing GREAT!!!!!!! It is a hard road at first, but the rewards are miraculous. My fingers and toes (as Jeebs says) are crossed for you sir!!

Quite possible CHF. I just grabbed one at the gas station. It said 'coffee' and 'taurine'. Can't find the one with Taurine listed on their site though.

Night before last, I was staying at a hotel with no O2 or anything else. I had gone down the mountain and been PF for a fw days, so I figured I was safe. I ate Tiramisu for desert instead of waiting for coffee. Evidently they don't put much caffeine in the Starbucks brand and woke with a heckuva hit shortly after falling asleep!!!!! You know the type, escalates from 7 to 9 in ten steps to the bathroom. > Alone with nothing sucked. I could barely see, but the old brain helped a bit and I made a full pot of coffee with enough water for 1/2 cup. Dumped all the little paper packets of whatever in it and downed the nasty mess. Sat in the bathroom and rocked with the old wet cloth held to my head for about 15 minutes. Really close to up-chucking the coffee. Then I could see again. Another 30 minutes and I was asleep! 8-) Note to self: Never leave home without Bottled coffee or something in my pocket for relief! : Starbucks double shot expresso has taurine in it! Nice find on the way back home. Happy Friday to All!!!

siouz, I think we all worry about going chronic when we experience a cycle that is longer than 'normal'. I am not sure there is a 'way' to tell if that is happening. By 'old' definition, chronic is a year with no longer than two weeks pain free. The 'new' definition is four weeks pain free. Weather patterns seem to jack-up the Ch hits too. So, if there are a lot of low pressure fronts moving around, CH events tend to rise, along with migraines. Currently, it is that time of year for much of the nation Normally, I will have one or two episodes lasting 3 months each. About 6 years ago, I had a six month stint in hell. Last year, a full seven months of hades. Started in earnest in early Sept and ended March 20th. That is not counting the start up 'rogues' or the dying last stabs of the cycle. It took 2 months to blow the dragon away. I too though it would never end. Slap backs, PF a day or at most two, then back to hell. Start over. Repeat. The only way to know if it has become chronic is to mark the calendar. At least to my knowledge. Every site I have checked just gives the year mark as a definition. Sorry. I detoxed in Oct/Nov of last year and have not touched scripts since then. I had tried several courses of Pred and numerous other meds. Coming off the Pred always sent me back into high cycle and the other stuff just sucked. Verap was the most helpful, even though it cost me two teeth. FYI, the short acting that you take 3-4 times per day is more effective than the long acting version. ;D I was off it for over a month before I saw much relief. When Topamax was prescribed even though I was severely under weight, I quit the neuro except for an annual check up. They are now putting that into diet meds for crying out loud!!!!!! I, like many others, found that the meds were useless and appeared to extend the cycle. I don't think this answers your question, but maybe another tale of conquest will help. Beware the weather. Watch the barometer. It gives me advance warning of a heightened possibility of hits. Take the best care of yourself that you can and enjoy life to max when possible. Just having a positive attitude is good. All the Best!

Elly, Last year during the 'hell' cycle I started on the D3 regimen. It did not help, even though my blood work showed blood levels were at 30. I can not say for sure it made them worse. They could have gotten worse by themselves. There is no way for me to know for sure that it was the vits as opposed to the beast, but they did get worse. I stopped the D3 until I had killed the cycle. After a few months I started back. I still take it because I need it. Starting back did not activate the beast. Nor did it prevent the return of the beast. But, it seems to have helped reduce my arthritis flare-ups. Hopefully as the levels in his blood drop, the adverse reaction will drop as well. From what I have read the D can do three things: Make it better, do nothing, make it worse. Since it has helped so many, most of us have opted to at least try it. Some have paid a high price while many others have gotten PF. I am so sorry that Jan had such a bad reaction. As I recall, it took a bit to settle back to pre D levels. But, drop it did and I was able to kill the dragon after a 7 month cycle. When I started the regimen I was about 4 months in. Personally, considering the severity of his pain and his response to M, I would change nothing until the pain is gone. Just stick to the M. This is one hell of a set back, but hopefully a short lived one. While it may remain in his system for weeks, the levels will drop over that time and things should get better again more quickly. All the best to you guys. If wishes had wings, he would be much better today.

Elly, While supporters do not have the CH pain, they certainly suffer supporters pain!! To enumerate the pain I see my supporter live with: Watching me in agony and being asked to 'Go away, please. Don't look while I am suffering! You can't help and I am embarrassed. Trying to reach out to me and hearing ' It hurts more when you touch me or talk to me! Too just listen focuses the pain and increases it!' Having to do the cooking and see me not able to eat anything! Seeing my self esteem go down the drain for months at a time. Living with me when I have little joy in life, no matter what he does. It is horrible to want so desperately to help and all help is being rejected!!! Initially he was so angry and blamed himself. He had no outlet for these awful feelings of impotence to stop it or take it on himself so I would not suffer. It must be like watching someone you love dying a little each day. My husband was my savior when he went to the neuro with me to convince said dr that I really was in agony. After all, as a woman, I must have migraines, not clusters!! > He supported me during the times when I took horrible drugs for relief that did not come and when I trashed said meds. He took me on vacation to lower altitudes for relief and loaded the tank of O2 for the return trip home when we both knew it would be needed. Perhaps the best gift over the long haul was never chiding me for spending so much time on this site, ever!! I can only imagine his pain, as he can only imagine mine. It creates a divide that we have managed to conquer in the most part. He is my angel and love, as you are Jan's. Were I to go thru this alone, it would be ten times worse. I hate that he has to take over, manage everything, and stay calm when this horror takes over our lives. I don't know how he copes, but I thank the powers of the universe that he does it so well. We have learned to celebrate the victories together and forget the lost months of barely living. I love the support you have showed your partner and understand the sacrifices you have made. There must be a special place in heaven for supporters. Remember, you need the relief of venting just as we need the relief of pain.

Ricardo, I just tried it with no problems. I have noticed the site is moving slow showing your post on the topic page though.

Pos, Here's wishing you two a great PF day together! 8-) spiny

I think that setting the alarm would be a good thing. It would pay to be up at the beginning rather than wake with one already zooming up the scale. I have not taken Zomig, but I am glad it is providing you with relief. Take care! spiny

Wonderful! The mouthpiece is what I prefer too. I am so glad to hear he is getting a fast abort now.

birdman, Those are some powerful slapbacks going on! > Hopefully today is less intense for you. Sounds like you got a good nights sleep and then were hit all/most of the next day. I don't think that is terribly unusual. Very painful though. :'( For consideration: Yesterday we on the east coast had a front move through. It started here night before last and would either hit your area at the same time or a bit later. While I am not in cycle, I had a mild hit yesterday and a rough tough O2 and coffee hit at 9 this morning! > Personally, I blame the change in barometric pressure. This may have caused some of the hits you experienced or intensified them. :-/ As for the caffeine: If you are getting headaches from too much of it (some say it can happen), peppermint tea is supposed to relieve it. From my reading 'too much' is usually more than 4 cups per day. However, as a vaso-constricter, caffiene is often added to medications for headache. So, it seems to be a matter of how much caffeine you took in. :-/ I hope you are much better today. :-* spiny

Morning Pos, CHF gave a good rundown on how to breath. Proper breathing should shorten the time needed for the O2 to stop the hit. Also, the mask should help reduce the O2 time as well! He does not hyperventilate before the O2, but during the use of O2. I would combine the O2 with an energy drink or caffeine. They can and do work well together for many of us. Being off the meds should help now too. Since his LPM is low, it might not provide enough in the holding bag when he is breathing fast and deep. You can disconnect the bag and add a larger bag. An unscented trash bag can work. Tape up the opening in the bag tightly. Cut a small hole in corner of the bag and tape that onto the tube that you removed the original bag from. This gives you a larger reservoir to fill for each breath. Allow the new bag to fill up most of the way and start with deep, forceful breathing. If the bag gets sucked empty, drink some of the coffee or energy drink while it refills and continue with deep breathing. When the pain is gone, resume normal breathing for the same time it took to kill the hit. Save the original bag for when Jan gets a 25LPM regulator. With the higher flow regulator the supplied bag should be sufficient. Morphine can stay in your system 3-5 days. It exits the bloodstream quickly, but remains in your system. It can affect a urine test for ~5 days. As for the Serotonin, I have never used it or read about it being used. Hopefully you will get more info from another member on that question. Personally, I would not take it without some input from someone who knows, just in case. If I have time later, I will try to check the archives to see if there is anything there. spiny

birdman, Here's hoping you knocked em to the moon! PF time to you!!!!

If you are getting sick of Red Bull, can you try coffee? It works for me and others. Change of pace might help. If there is a freezer at work and you can stick your head in it for a minute, that also helps many. So does going out in the cold, but it is probably raining and not cold today. Many use an ice pack as well. Being weird, heat works for me at the beginning. : Fingers crossed here.

Probably 40-50? Some people start lower, just to get the hang of it. Most current posts seem to go for 50-70. If you are concerned maybe try 40. Old suggestions were 25-30 for the first time and then increase as needed. I definitely would not go lower than 30 as it might not be enough and now you have to wait again. Here come good wishes and healing thoughts for tonight. Hang on, the day is half over now, right? spiny

Rants are perfectly acceptable birdman. Crush them up good and soak for 1.5 to 2 hours. You can add some lemon juice to them if you have it. Helps with the taste I hear. Some say it helps release the actives, some say not. Then, off to a good nights sleep we hope! PFDAN to you! spiny

Pos, So glad to know that you have the Optimask now! [smiley=tekst-toppie.gif] It should make a difference in the length of time it takes to abort and save some O2 as well! Be sure to remind Jan to hyperventilate and exhale with force at first. As the pain recedes, return to normal breathing. I forgot to do this myself a few nights ago!!! It does make a difference, as I inadvertently reminded myself. Keep us updated! And you get a pair of 'angel wings', you have earned them. spiny

Another Happy Birthday wish here Ricardo! May you drink a few pints of excellent beer this weekend to celebrate [smiley=beer.gif] [smiley=beer.gif] [smiley=beer.gif] spiny

lbh, The concentrator is not recommended due to the low O2 content and low flow. The minimum flow for most people is 15LPM, but many need a higher flow of 25LPM and the O2 should be 100% Generally it is recommended to get at least a 25LPM regulator. This will support hyperventilation for most CHer's. good luck spiny

D3 doesn't kick the CH for me, but it certainly helps with overall health. Overall health goes to sheeeet during cycle, so any help is welcome at this house. I am staying on it year round now. Cheap and good for you. Did you try the nap or not?