spiny

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!!!!!!

Me too Kyle, me too.

From what I read, most 'adverse' effects were exaggerated and sometimes unfounded. Sounds about right, considering the media hysteria.

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. :-[

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?

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.

Yep, I call that kind of stuff 'STRESS RELIEF' 8-) 8-) Glad to hear that you got out and had a good time.

Sorry Brew, I'm just in a really foul mood and I am sure that I missed the point you wanted to make. :-[

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

YES!!!!! > > Every time I go 10 miles from home. Whether I am in or out of cycle. How did the event go for you?

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.

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.

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.

Strawberry Candles. 8-)

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.

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.

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.

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

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.

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?

Welcome Nick, O2: It is much cheaper to do welding O2 than medical O2. If you buy your tank, you can get it filled anywhere. Rent and you can only get it filled by those folks. Get at least a 90 (90cf). It will fit in any car to get a refill. Refill here is about 20.00 or so. Get a 25LPM regulator. About 55.00 via internet, no script needed. Optimask: 28.00. Buy it from our sister site:clusterheadaches.com. Let me know when you get it and I will be glad to share the method I and many others have found most helpful for aborting. Melatonin: I use 20-40mg per night in cycle. Take about 30 minutes before bed. I would start with 20mg. If ya get the wake-up call some hours later, try taking a little more. Normally, 10mg would be sufficient, but not in cycle for me. My son thought I was nuts to go up to 20mg, till he got hit for the first time last night. > The beast seems to do his best work at night. You wake up in almost full swing the second you open your eyes. Check into the Vit3 regime. It has helped a lot of folks. Just anti-inflamatory vitamins and good for you. Seeds: That info will be forthcoming I am sure. At the bottom of your screen, you will see 'forum jump'. Click the down arrow and start reading. A lot of great info there to get started on. You have landed at the right spot. 8-) spiny

My son called early this morning, not the norm at all. The beast made a visit to his house last night. > > >: First time ever. He was shocked that so much pain could take over in the space of a few heartbeats and disappear with the same speed. The lack of the 'pulsing' type pain of a migraine surprised him too. He has had occasional migraines since his teens. Usually they last 2-4 hours with Excedrin Migraine and lying down in the dark. Last night, FOUR ice picks in an hour, lasting about 10 minutes each. Swollen painful temple. Hot welding rod thru the temple to the center of his brain. He grabbed a V8 energy drink (caffiene and taurine) and slammed it. In the past, he has been shocked that I take 20-30mg Melatonin during high cycle. The most he has ever taken was 10mg. But, he remembered that too and grabbed 20mg with the V8. That ended the attacks for him. I am heartbroken. :'( :'( He just turned 30 and I was hoping this would never happen to him. I told him to start a diary and call me later when he is back up. Then, I would give him more tools for his armory. Already suggested the cold treatment and prop up to stay off the sore side. He works at a boarding school, so O2 with high flow is constantly available if he needs it. I thank God that I have learned so much here in the last six months. At least I CAN help and keep him off the path of destructive meds the Docs would give him. Still, this really blows.

Hell Yeah! 8-) 8-) 8-) 8-) 8-) 8-) That is AWESOME! Yes, I am cheering for you. Did BB send the [smiley=vrolijk_1.gif] cat over?

OK BB gets to wear black and purple plaid. 8-) Just be sure to add a few little pink heplalumps here and there. Still need a new name though.

BB, The cat really should stay, Cheshire (SP?) type from Thru the Looking Glass. Highly entertaining. ;D Wonder where Brew is now?????? 8-) 8-) Getting better I hope! : Perhaps you sent the cat to keep him company tonight? [smiley=vrolijk_1.gif] That one has no definition, but the colors surely do fit.