spiny

What the ???? > > > > > > > > > I just got this notice when I tried to Prewiew a post. HEEEEEEEEEEEEEEEEEEEEELLLLLLLLLLLLLLLPPPPPPPPPP! > spiny Edit to add: I checked my firewall and all is supposedly well!

Evo, Some of what you describe I am familiar with. So, perhaps a word might help. The shakes: Yep. Doing a 'bit block' at the dentist. "Just hold your teeth tight together and don't move." Meanwhile, the jaw is on its' own mission and trembling uncontrollably. Sometimes it is like being cold, but I am not cold, just shaking. Almost vibrating all over. Typing: I am terribly dyslexic lately with a keyboard. IE: trreilby, teh, and so on. I spend as much time correcting as writing. The Knot: Some of us get a knot at the base of the skull or similar location. Neck and shoulders mostly. For me, this pain will continue even between hits and so will the knot. If you are talking about the Lumbar area, I don't know. Hopefully your Doc can help with that one. For my neck, I use a heating pad for much of the night. If my days are bad, I use it then too. My son, who is an excellent back massager, can't get the darned thing worked out. Just time off from some head pain and the ole heating pad have to suffice. O2 will be your life saver. I vote for a regulator that goes up to 25LPM. When in high pain, hyperventilation starts and then 15LPM does not supply enough. For me. As the pain reduces, so breathing rate and 15LPM is a finishing point. Breath DEEP! Expand your lungs up, down, and sideways. Pull your diaphragm down. Focus on your breathing, not your head. It helps. Also. exhale FULLY. Push hard and then start again. Picture a beach ball, fill it up in all directions and then deflate it with determination. When the pain is gone, continue for as many minutes or breaths as it took to kill the pain. Otherwise, ya might get hit again and soon. All the best to you. These guys know a lot and there is a lot in storage on the site. spiny

Dang > That was supposed to be a secret! Now everyone knows, Dan.

It definitely works to take that wonderful swelling of the eyelid and and change it into the welling and then spilling of copious amounts of saline solution. This method provides instant pain relief for pressure in your eyelid or eye. Length of effectiveness is yet to be determined. :

I have a grinder, that got used to grind my Tabasco peppers a while back. So, I wash it, dry it and immediately put my finger into the corner of my CH eye. :o :o :o :o Oh Yeah. Way to go, stupid!

From what happened to Google, I doubt it. They allowed the set up and advertising for Canadian and Mexican 'pharmacies'. Real or not, it can't be done or at least not advertised. Feds set up a sting and Google recently paid out a cool 500 million for knowing and allowing it. I don't think our docs can do it either. Oh well.

Thanks Pixie! I did a lot more reading here last night and picked up some of that. But, they do keep changing the definition lately. I'm just really not happy that he has hung around so long this time. But, I have stopped all the medical junk too. In my heart I know that is a REALLY GREAT THING!!!! Gaining weight and wanting to eat would be the truly ideal change, since the meds did not stop the dragon. I know, I am supposed to call him the beast. Too long as MY personal dragon to change I guess. Later spiny

Bejeeber, Hehehe! Nothing like a really good telling the dragon to take a hike! 8-) Currently, he is stuck back in his hole. My ears are ringing like crazy. Melatonin failed, so I will be up a LOT tonight. Three hits, but the tentacles have been put back inside, so I am not currently loosing my little pea mind. Damn shame I can't take my 'mouse gun' to him and blow him off the face of the earth for all of us! 8-) I really appreciate the response. Just having a post on my thread is a BIG mental boost. Still, I'm confident you'll be able to tell him "hey MO this you futher mucker!!", and show him what a little KO action is all about. You betcha I will. Old yes, shy not. Probably why I tend to offend some folks. Gonna change? Nope. Just got to live with who I am. I have to live with me, not you guys. I have lived too long and 'changed' for others in the past. It does not work. Then you wind up being someone else and wondering what happened to YOU! It is a very uncomfortable feeling. Besides, eventually the 'real' you comes out and the people you changed for are totally wigged out spiny who is unable to lie down but at least can see now 8-)

Buzz, Yeah, it really sucks. We all know. But there are a lot of caring and kind people here to help you. If nothing else, the number of responses that you have received should boost your spirits. You are not alone. Remember that, you are NOT alone. Stay safe and stay in touch. spiny

Bonkers, Accidit In Puncto Quod Non Contingit In Anno spiny who will be up tonight and thanks you very much.

the beer test. > Went down the mountain Monday of last week to see the eye doc. No problem. Drank 2 beers, so he could see the pupil disparity. Got a shadow. Lasted most of the day. Not an issue, considering what they did to my eyes!!!! > Scratched the snot out of both of them. Came back up the mountain. Lower barometric pressure, normally a big issue for me, no big deal. My eyes just hurt from being scratched. Small issues last week. No biggie. O2 and good to go. Sunday, got two moderate hits. O2 worked. One occurred when I got out of bed to hit the ladies. That was a bit of a smacker. I think it was Sunday. Monday. Went to the dentist, through hail and rain and a 2 hour school delay due to weather. Went down the mountain to see the dental tech, through sleet, rain, and ice. Came up the mountain. No issues. WOW!!! That was great. Tuesday, nothing. Today, drank a beer and off to the O2. That hot poker is still in there, but I am drinking coffee and freezing. More O2 = more cold. And coffee will help about as much. WTF!!!!!! This has been going on since September. My longest cycle with the dragon. I am NOT happy. I am not sane. I am really pissed off!!!!! Off all meds for over a week now. Ten days, I think. how can getting out of bed set the dragon in motion? How can I deal with foul weather with no problem and then get this? How can this hot poker running in my temple cause my eyelid to swell like crazy and not run? why can't I see the keyboard anymore. what the hell is going on? is his MO changing or am I just loosing my mind temporarily? $hit and again $hit. forget preview, forget spelling, just say it and go. this 'fecking' quoting mystina, sucks

Just failed the Beer Test. > This sucks, big time. Beer is the Jesuits gift to mankind. Or the Benedictines, don't remember at this point. Just ticked that one told me this helluva long cycle is NOT over. Lets see, Sept thru Jan, does that make me chronic or just a wimp? Gonna be pissed for a while, and not in the British sense either. > > spiny who ain't happy this pm

Happy Birthday to YOU!!! My son also has a Bday today!!!!!!! Be Happy, Stay Safe, Enjoy!! :D :D spiny who remembers this day, 30 years ago VERY WELL 8-)

Hi Renee, So glad you are continuing to improve. Continue to count those GOOD days, ok? Also, remember your tag line (I think it's that or motto?) "That which doesn't kill me, had better run pretty damn fast!"Â All PF to you, spiny

Dan, I found the GABA, taken when I normally would get hit, to be a huge help. It gave me many PF days. I took a multi B Complex with it too. I stopped when I realized it was giving me very creepy, tingly, skin for 30-60 minutes after a dose. Also, I was detoxing for the eye doc. Since I have gotten that little fiasco behind me for now, I may start back on the GABA. I took 1 in the afternoon and 2 at 8:00pm - a normal BAD time of day for me. It was most effective when timed to my CH clock. All the best! spiny who thinks Dab is pretty dang 8-)

Perhaps this should be Scientific News and Research!

For the eye specialist anyway. Went to Durham Monday for my Tues. appt at Duke Eye Center. It was to last 4-5 hours. Got the history done and the once over at 8:00. Saw the Resident Specialist at that point. In go the lights and she looks all around. Told her I had acquired Horners from Clusters. She was a bit blank about it, but reached out and mashed that super muscle over my left brow. 'Yes. you do have ptosis and miosis. Have you eyes always been two different colors' Nope, that would be why I am here. Then, more pokes and tons of pics taken. Ultrasound done. Pixie: You are right, it does feel almost ticklish! Then, more pics and more drops to numb the eyes. This was now the third time. The tech. doing the pics was all thrilled, she was actually seeing green eyes, not a mix of blue and brown. She scratched my eyes a lot as she played. Then, off to the head Dr who has been directing all this activity from the comfort of the hallway outside his exam room. More drops, more scrapes, and me asking for some Systane for my now very scratchy and dry eyes. Finally, he looks at me and requests that I send him school pics so that he can compare the colors since acquired Horners was not known to change iris color, only idiopathic Horners would. 'Dr, when I was in school all pics were in black and white.' ;D He was surprised and it was funny. Did not think it thru I guess. I had gone off the Verap. on Saturday and so was now only taking the Vit D stuff. I was pain free Sunday, after 3 light hits on Saturday. I drank two Heinies Monday night to see if I could provoke at least a shadow for my appointment. Dropping down to the flatlands usually works well to provide a short respite and hurts like hell when I come back up. I did provoke a shadow for most of the day there. At least it allowed them to see the pupil difference from eye to eye. Now, they are all abustle to see the old pics and see if acquired Horners can produce iris change. But, all I got out of it was very scratched and dilated eyes. Who knows, when I finally find more than two b&w to scan over, they will want me back for more tests! Again, Murphy Rules! I presented something they had never seen or been taught. Wonder what he will think when he sees those pics? Wednesday, all I had were severe short stabs of a tiny ice pick in my left eye. The rest of the week was PF even thru the weather change. Hurray! Out of cycle. Going to post it today with a big grin. Hello 11:30. > Hello 3:30Â > Sucking down coffee writing this and feeling better. But, that means this 4 month cycle is not giving up so easy. > At least I am med free at this time and that is something to really celebrate, as it has not been the case for 7 years. spiny who is not particularly happy today.

thanks Bejeeber, I might try that. I am pretty sure I need Potassium, as my feet get cramps in the arch sometimes at night. I keep forgetting the Bananas! Probably came back because I have curbed my drinking for 4 months now. :-[

Two sips of wine or beer (my personal favorite) and I am gone. Away from everybody for the rest of the night. Potato Vodka: No response. Drink it with Tonic. That way I get my malaria medicine for restless leg syndrome. 8-) BTW, why can't you buy or get a script for Quinine for RLS anymore? Used to take the pills and they worked great. Can't get them now - label says don't take for RLS!!! >

Concussion at age 21. Out for 20-30 minutes. No medical care after. Clusters started exactly 3 months later. Ran for 5 years. Then, in remission for about 15 years. Now, can't get rid of them. They have their own mind and their own time. Seven years ago, I started visiting the mountains, 3000' elevation. Clusters came back. Went toxic on Carbarzamine (SP?). Switched to Verap. for two years. Caused loss of two teeth. Nasty $hit. Then came Diltiazam and then back to Verap. Now, off all prescription meds for CH's. I still got them when I changed altitude, ie: returned up the mountain where I now live or a low pressure front moved in. Was prescribed Demerol for the pain and told O2 was too expensive for treatment! Needless to say, did not help. Going off Verap was tough, but it seemed to do as much harm as good. BP way to low and doc wanted to up the dose. Just emerging from a cycle that started the first of Sept. That was when I went from Diltiazam (SP) back to Verap. Neither stopped the cycle, so why take the stuff? spiny doing better

Morning Renee, Once upon a time, my 11 month old grandson died. In my house. During the night. His mother was 21. They were living with me. I said to her "Oh my God Sweetie, I can't imagine how you feel or the pain you are suffering". She looked at me and replied "I thank God that you can't Mommy". That is how I cope with those who can't possibly know. I thank God or the Universe that they CAN'T know. As for the platitudes, let them go. People don't know what to say, so they say stupid, well meaning things. Try to imagine the many cliched, ignorant, but well meaning things that were said to my daughter and me at the funeral for an innocent baby. Always remember your own, your child. Be there for him. Let the rest go and be glad for others that they DON'T understand. Would you wish this on one of your friends? No. Of course not. On your son? Never. We cope because we have to. We cope because we are resilient. Down days, we don't cope so well. Up days, we do better. Reading your blog, I have seen some very good days for you in the past month or so. Go back and read it yourself. Remember those days and your feeling of accomplishment. Stop counting the number of Ch's you have daily, weekly, yearly. Start counting the number of PF days, weekly, monthly, yearly. I think you are already off to a better start for 2012 than you had in 2011. Focus on that. Go ahead and be angry about the bad days, but don't FOCUS on them. You will feel better. You will be better able to accept the platitudes and well meaning statements of friends. Just understand, they don't and can't understand or identify with your condition. They can only compare it to what they personally know of pain and despair. When they voice the comparison, you probably want to put the Hex on them for an hour so that they can compare apples to apples. I know that I do. But, it would be rather evil to wish it on anyone other than an incompetent Dr - all docs should have to experience the pain of the diseases they try to treat and the misery of the meds they dish out. By the way, damnit, get the O2 setup!! > Then you will have a love affair with your tank when you are all alone. It will save you, cause you won't be alone and it can provide relief that no girlfriend or boyfriend can, no matter how much they want to. It will shorten the pain time and intensity. So, be the 'go getter' that you are and go get it. spiny who once again is angry with the docs of the world.

Very well done by Nat Geo. Dan, I suspect that anything would have gotten the 'slap' if it aided the dragon at that point! You and your wife and daughter were wonderful and incredibly brave. Thanks from my family and me. May this help our cause and bring us all relief. spiny who shall ask Duke University what happened to their planned program for Clusters several years ago!!

Short story of my experience with GABA. I had about 3 PF days in Dec. That ceased on 12-27 or 28. I quit taking Lyrica and Melatonin which I used to take at night and started GABA. Two 750's at night. I had immediate relief. Even dreaming. Some days no shadows and others a few. Focus was very good and memory improved. I added B complex at night shortly after the GABA. Took a trip south from Jan 4-8. O2 stayed in the truck! Did not need it even once. 8-) Returned up the mountain with no CH. A weather front was moving in and NO CH. That never happens in cycle. Currently I take 3 120mg of verapamil, D3 per the board recommendation, 3 GABA 750 and 2 B complex. I take one GABA in the afternoon and 2 about 8pm. When GABA is taken at bedtime, I have a rocky time if I have to get up before a few hours of sleep. IE: I run into things! And, it seems to make me need to hit the head a lot. I decided to take it when I am most prone to hits. Also, instead of becoming sleepy, I get antsy. Restless and itchy. No hives, just surface itchy. When I am not trying to sleep, I don't notice the itchy part or it doesn't start at all. Yesterday, I had one CH, aborted with O2 in 5 minutes. Miosis developed with the CH, as it always does now. > Pupil will only dilate to 1/2 to 2/3 the size of the other. My GABA schedule is based on my CH schedule. Afternoon and evening dose when I would normally have pain. While it has only been about two weeks, I am really pleased with the results. I have been able to cut back to one coffee during the day instead of two. While I still won't do the 'beer' test, I can drink potato vodka with no issues. I am more focused and no longer need constant lists of what to do! Gone is the feeling of running a V8 on 5 cylinders with my head and ass not wired together. Doing rather complex math problems in my head again is amazing. ;D Monday, I have to go down the mountain again for an eye exam that will last all day. We will see how I handle the lower pressure upon returning home. Drs don't believe the lack of dilation in low light and one iris is changing color rather dramatically. In my guess, both are tied to CH. This means that at this point, I am only taking Verapamil and Singulair on a regular basis. I had cut the Verap down to a half at night, but with travel I went back up to a 120mg dose. All other icky meds have been deleted from my schedule. Lots of Vitamins though! I have Valium for muscle pain due to back surgery, but I only take one once or twice a week, not daily as prescribed. I do not take it at night, generally in the am when taken at all. Also have eliminated Progesterone from the daily list. I will update next week about the trip and any effects it has. These last 15 days have been great! spiny

Renee, 100% success is a fallacy and should never be stated by a physician. Ain't no such thing. Sorry. As I am sure you know, both sexes have female and male hormones. Synthetics or otherwise can start migraines but stopping them won't make every ones migraines or clusters go away. Get your tests, but don't expect miracles.

Indy, I am so glad you have the O2. It is a major miracle!!!!! Anthony, Yeah, know what you mean about being 'stuck' I have been getting a lot of shadows most days. Coffee helps me, if I remember to drink it at lunch and about 5-6pm. Can't do the energy drinks at all. Tooooooo sweet and I get nauseous right away. I have had constant sore neck, knot on the back of my noggin, and a 'swelling' feeling in my temple. Some folks use the O2 for those as well, but I can't hit the tank all the time so I try to cope with the coffee. Forgot it this pm and now there is the shadow again. My own fault. The sore neck has yet to leave, even after months this go around. Despite the expert efforts of my son to massage it out daily, it is awfully fricking constant! Alley can be a big help. Ya might give the ginger a try. Different strokes work for different folks! Best of luck and PF days ahead! spiny