spiny

Renee, See problem. Attack problem. Right? Keep on trucking. As you are well aware, things change. spiny who wishes you all the best in the world

Ok, Since I have hounded you worse than most anyone about the O2, I will jump in again. It's been over a week I think, so NAG them. It is just something we do, right? Nagging that is. Or at least I have been told that a lot over the years. ;)

I have referred to it as 'The Dragon'. Mainly because it is mythical and no one has seen a dragon! $hitstorm in my brain really is more realistic, but you get funny questioning looks from folks who really care about you. If you try to explain, they try to follow and offer to help. All of which leads me back to dragon: A firebreathing mythical creature that we have some tools to protect ourselves from, but not enough to keep it locked up safe and sound. I don't hate it, I accept that I must exercise personal power over it. Hardest, I must control my response to it. Without that, he says terrible things using my mouth. Controlling my outlook is my control. Maintaining that control is the hard part. Recently, I let the head write down what was going on. No input from me, sort of stream of consciousness writing. Then, it was a jellyfish. Spiritually, I don't feel that it gives it any power, just a name for others to recognize when I am in pain. As a spiritual being, I feel that we are given a chance to view a past life, see how we dealt with it, and then decide whether we want to tackle that issue again or another. Personally, I am sure that I will need a 'do over' on some things. I fail to see how most of us can feel ready to say our soul is 'done' - has reached its highest potential. Just as I can say that this post does not include or touch on all the points properly. Many pieces are still drifting, not formed into coherent thought that can be shared.

ipain, Many times Pred. will not work once you begin to taper off. For me, at 3/day, the CH returned. Verap helps many, but it is bad if you have low PB. O2 with a non-rebreather mask at 15 to 25LPM is rocking! In a good way. Ask questions. Read. PM anytime. spiny

Good luck Renee! Yes, going on the pill has set off many a migraine. I don't know that stopping will end them though. When I was first diagnosed, with migraines mind you, they said to stop the pill. I did, but my CH remained. I saw no connection between the two. Once started, the pill made no difference for me. Fingers crossed for you!

Renee, Got space for another traveler? I'm afraid that when I look back at what I learned and conquered in this life, I will have to take on something more stringent the next time around. I believe it is all in how you handle adversity, the decisions you make when faced with it, that determines your spiritual growth.

So, having my head pounded in a previous life did this to me too? Great. > P.S. I did read and enjoy all those dang books! Course, I read The Hitchhikers Guide to the Galaxy too. 8-) 8-) 8-) 8-) Restaurant at the End of the Universe, here I come!

Mrsg, I hope you have a high flow O2 set up. At least 25LPM. Also, the non-rebreather mask. That should get you an adequate flow for aborting. What is your set-up? Less than 15LPM won't work! spiny the grump

I'd get Allen Gura for defense! 8-) 8-) 8-) 8-) 8-)

I'm too old to remember. :D :D

Bonnie, Welcome. Glad you got here. Sorry you had to. As a nurse, I suspect you have O2 available. It won't get rid of the beast, but it will abort an attack. Read the O2 thread. It tells the whole story. Some of those 'lovely' meds really suck. They help, but they suck. Someone will help you soon with the other treatments. Look at the other New Here thread by mrsgnreyedidy. It contains links to some important threads to get you started. All the best, spiny edited to add

didgens, How is your son today? Anymore hits? I sincerely hope not. Some 'flukes' just seem to happen, for me anyway. Fingers crossed it was one of those, just a 'stand alone' hit caused by outside stuff. Let us know, ok? spiny The Happy today ;D

Hey Les, Why does my 'wake cycle' only hit after I go to sleep at night? Repeatedly? :-? didgens, That sucks for your son. Any stress involved in today's schedule? Stress is a trigger for many too. Two things, rolled into one may do more than add, it may be logarithmic. Put the two together and you may see the beast. Any weather fronts move thru at that time? Lower barometric pressure will be a trigger for many folks too. Try to consider all the bases leading to the home run. You will get a better answer. Hope that makes sense to someone other than me! : All the best,

the bb, Thanks for the link. It says one month PF vs two weeks PF that I have read elsewhere. Also, I now know why triptans and I do not get along. I am allergic to Sulfa. Surely am glad I refused them. Took two Imitrex once a long time ago. My body just said 'No'. I didn't feel 'right' after taking the stuff. Now, they would for sure produce a violent drug rash at the minimum. Another 5-6 months and I will be chronic. > But, then again, I might get out of this hell-hole sooner. 8-) So, I will wait to post on this again in a few months, if necessary. Just wanted to say 'Thanks". spiny the sleep deprived

How about investing it? In the Shitake Schroomery we have heard about!

So, NO pepper??? :-?

:) :)

Kyle: As the 'beer judge', I don't know how this escaped you!

Evo, For some of us, beer is a BIG trigger. Two sips gave me my first K9-10 about 8-9 years ago. A beer will still signal a new cycle for me. Passing the Beer Test, for me, means drinking a beer about 5-7 days after I think the current cycle has ended. If the dragon stays put, I PASSED the BEER TEST! If the cycle is not over, I will get hit before the bottle is half empty. > I use the 'Beer Test' because beer, one of my favorite beverages, is a sure fire determination of the cycle end. Hope this helps!! spiny who passed the Beer Test today :D :D Of course she was cautious and only drank ONE! :

I don't know if this would work where you reside, but many over here use welders O2. You can get a proper non-rebreather mask at the sister site for about $25.00 plus shipping. Someone will post more on that most likely. The other 'nicety' is a regulator so you can dial 15LPM or more as needed. However, you can still run without the LPM regulator or mask. For quite a while, I used my regular welding set-up. Just turned on the O2 and added a wet washcloth over the welding tip. It helped to reduce the dryness of the O2 and I felt safer blocking off the tip and any residue left on it. My husband watched me a few times because he was worried I would turn on the Acetylene instead! :-[ At first, I was concerned with it being 'welder' O2 and perhaps causing problems. Then, I remembered all the guys I used to work with huffing the O2 to kill a hangover! In my reading and from what my regulator says, you will need at least 300PSI input from the tank. I still use this O2 supply, since my Dr says that O2 is too expensive! > Fools can be doctors around the world. You can also make a bag to cover the hose or tip on the tank. That way, there is plenty of O2 in the bag. Just be sure to exhale away from the O2 bag. Slit and tape the bag to the supply and make a hole to suck it out from elsewhere on the bag. If you continue in construction, I bet you might find a welding set-up on site at work! Tell them you have a 'slight' hangover! 8-) spiny

Morning Evo, Good for you and the O2 It will be your best friend sometimes. I just went through a whole days mess with eyes two weeks ago. : Ptosis and miosis occur during an attack and usually disappear when the hit is over. But, ptosis can become permanent. It means that your eyelid droops as I am sure that you know by now. The miosis is a failure of the pupil to dilate and contract at the same rate as the un-affected eye. You would probably still be able to see this in low light after an attack is over. Use low light and a mirror. Cover your eyes loosely without touching the lids while facing the mirror. When you remove your hands, the CH eye will not dilate at the same speed or to the same degree. For me, this will last for several hours after and if you are getting hit a lot, you may be able to see it most anytime. My CH side will not dilate to the same degree. So, with shadows or after a strong hit, it will continue for hours. Easy to check yourself and when you are not in full blown pain. The ptosis can become permanent. The miosis goes away (for me) when I am PF for a day. Good luck! As for the vision express thing, I had a similar experience. Bounced around all day and a boatload of scratches for my trouble. End result, no answer!!!!! Well, except that they saw I had Horners Syndrome from the CH. Not a big help. Stay safe and stay in touch spiny

Evo, "He awakens like thunder....." I love that verse. Sooooo true! Pixie is right. I have stopped calling them headaches because that puts a verbal limit on someones understanding the condition. Course, you could take two wires, attach a clip on the end of each. Strip a bit off the other end of each, stick one into each hole of an outlet in the kitchen, then clip the other end of each to her eye. Just for a split second. That AC current would give a short jolt and describe part of the pain nicely. Then, she might get the picture, just a little. Know where you are in trying to explain. Perhaps seeing the National Geographic specials that cover some of this hell would help too. My husband is very supportive, but something about seeing a grown man in such pain opened his eyes, WIDE! Otherwise, I have given up. I just say that I have a condition that affects so few people in the USA, that it would be hard to explain. Then I let it go. Never have I been able to get the point across, even when I used the 'suicide headache' monicker. Best of luck to you. Let us know how the Dr visit goes. You are not giving that up, are you? I still say go for the O2 at least. It will keep you a bit more sane. Then, if you want to ride one out for the writing you can, but you can put the beast back in his cage and quieten his rage when you must. Just a suggestion. spiny who wishes you all the best and speedy release from hell

Alley, ALERT!! Form Spoofing Detected coming from IP address and then my IP addy I think. Never saw it before, but searching Google on here brought up a thread where it happened to someone in 09 I think. Anyway, one email acct. that was open starting going nuts when the notice came up. Nuts: flashing constantly that it was sending notices to somewhere! That was not MY account either, which makes it worse. When I Googled the info later, it showed several places selling such programs. > I am not too informed on this nonsense. My AVG says all is clear and up to date. Any help is appreciated! 8-) spiny

Also, the icon for the site on the tab bar is now missing! Just a dotted box where it should be. Anyone out there that can help?????? >

Hey, I looked up the link, tried to post, and got a form spoofing notice instead of a preview as asked. Never saw that before!!!!!!!!!!!!!! WTH? spiny