spiny

I got to watch part of the segment on LSD today and the 5 out of 6 who got relief from it!!!!!!! I bet I could order a copy from them. Money is money. I fell asleep. Also, I found it by accident and missed the beginning. But, my husband did get to see the man with the high pain CH. Guess I don't look as weird to him now. Any input here? spiny

AO, It is also a good idea to get a blood pressure cuff for home use as this stuff lowers blood pressure. That is why I can't take a higher dose. Also, do it right. Sit, take ten deep breaths and then start - that gives you a better idea of your sleeping BP. You might be really surprised at your reading. I was. I too have read about the ER not being as good for us. I am sorry it did not work for you after the ER series. I haven't decided whether to ask for a change or not. It also allows for a higher dose in the evening to help more thru the night. From what you say, I will re-consider changing it. I really hope for this to be my LAST round of all that ___! > The sleep thingy will be an issue. > I just can't run on 4 fours anymore. Especially if THAT is broken sleep. I can hack it for about 2 days now and that is all. spiny spiny

I'm reading. And waiting for more input. Everyone should jump on the bandwagon and help us 'new to the forum' CHer's. I bet that I am not the only one who needs and would appreciate it. Been in my hole, all alone, because no one else has these and can't fathom the pain and dis-ability we suffer with them. If not for my husband, I would have said Ciao some years ago. spiny

Thank You Lieutenant2, I'm not up for anymore pills and do not intend to return to the Idiots office. spiny who has had a pretty good day

GOOD Morning! Yesterday sucked, but worked. I napped in the am-woke with the Beast. Hit the o2 and a hot bath with cold cloth on my face. ATE: Read that again, I actually ate real food! 8-) Got hit hard again, twice. Then, down for a nap. I was exhausted. Woke at 6:30pm!!! Small hit so onto the O2 again. Killed it. 8-) Back to sleep at 1:00am. Had to watch The Big Bang Theory for my 'laugh' therapy. I SLEPT ALL NIGHT!!! Yes I am yelling the good news. ;D Maybe today is it-the end of this cycle. Only been going on since Sept 15th. Next week does make three months and that is way too long. To all who responded Thank You! I really thank you guys and gals as the saying goes. Getting the Melatonin today too. I will start on it tonight. I will keep you posted and my fingers crossed. It is Christmas for heavens sake and I need to be happy. Who else is going to do the shopping for the fam? Damn, shadow now. I will not give in, I will carry on this day, I can be stronger than this cause I got to EAT and Sleep yesterday. I will eat today, even if I have to go buy a meal out (which I never do). Ha. Positive thinking. Put that sucker back in the corner. Oh, thanks for the note on Verapamil and Calcuim. Today, I am going to take the Calcium at noon with juice, not with my regular meds. That should help too. Wonder if I should call the Idiot and see about Verapamil in the non extended release form would work better. What form do others take? I read that extended is not the best route for us. spiny the happy one right now :-*

A very nice nap from 9 to 12. :)My hated head alarm woke me. So, start the coffee and hit the O2. O2 worked again, thank heavens. Then, the coffee kicked in and finished the work. For the moment, I am just jittery and bone tired. After this I will try to eat something. That would be a novel idea. CHfather: Thanks. I am there on everything except the D3. I upped it this morning. The energy drinks make me nauseous, so coffee is my poison. I did not know about offsetting the meds. I will try that today. Thank you. AO: I had a great appetite at full dose of Pred., not when it was lower. I should have been starving, based on previous experience, but it wasn't so. I know 'roids are bad for you, I have read several posts regarding that. Besides, my hubby has no knees or shoulders - partly from 'roid shots to the joints many years ago. Yes, I will get thru this' I am just very tired. Dr normally is booked 3 months out. I could go the the ER down where he practices and get a shot. That might end it and get his attention. He has no protocol for getting me in to see him ASAP, but he does have a standing order for CHer's hitting the ER. However, that means going off my mountain and then coming back up which is a trigger for me. Lower air pressure thing. > Everywhere I go is off this mountain and it hurts coming back home. I am going to get thru today without any pain pills. I am taking the day off. 8-) Getting hit so often is killing me and leaves me running on 5 of 8 cylinders. As long as I don't have to deal with anyone, I can get by without any pain meds or cylinders. ;D Can a V8 run on two cylinders? Maybe, but it surely would run rough. That is today. Off to try to eat something while all is calm. Thanks everyone. I am not at all happy with where I am and will continue to work on getting something that works. And I will say it again - Drs suck! > If I could live on herbal medicine from Camomile to Echinacia and beyond, I sure as hell would. My herb garden grows larger every year, just in case the Zombie Ap. comes next year. Ya never know, I might just get cut off from the world up here. spiny the tired and hungry with a major feeling of disgust I am just REALLY glad the O2 worked this time. 8-)

Good Morning, Yup, last night sucked again. First four hits, I hugged my O2. Bet I burned thru 1/2 a tank last two days. After four good hits, I gave up on the O2 and went for coffee. Then a HOT bath to go with the coffee, as I was freezing and the heat pulls my mind to my burning feet and behind in the water. After 1/2 hour and the addition of lots of hot water the octopus climbed back in my temple. Good thing we have a boiler that provides unlimited hot water. 8-)Then, sit up for an hour and when the pain receeds to just sore and hot, I get to lie down with my neck in that special position that doesn't hurt. I never sleep on my back except during cycle. > I can stand a lot of the hot poker in the temple, but NOT the eye and NOT the hated eight armed critter that crawls out and takes over my face. That is my real Beastie. That is the 'leave me alone' sign. You can't help, so please, just ignore my gyrations. Smushed another pack of Charmin too. Sit on the john, hold that sucker tight and rock to the pain. It provides the perfect prop for my head or arm to hold it. When I find a less painful position, I freeze in that spot until the next wave hits. Sometimes I look really funny - frozen in place while walking is pretty funny. I look like a stuck Road Runner with one foot raised for the next step that I won't put down until the next wave of the octopus arm on my face moves and electrifies a different spot. :'( YouTube would love a short of that walk : We could label it "The walk of pain." 8-) Cluster headache in motion!" Well, stop motion would be more like it. Stick figure in action. I have lost 6-7 much needed pounds this last 6-8 weeks and I am really 'issed about that. > Seems like I must eat dinner the size of this house to gain just one pound. Even worse, I AM NOT HUNGRY! I have been drinking 1 or 2 Protein enriched glasses of milk a day for over a month now. One provides 53% of protein per scoop, so with 2 at least I get my protein. Yes, I am doing the D3. According to the thread on it , I still need to add about 3000 more units of D3 to make 10,000 mg per day. Will do that today. Also, I will get some Melatonin. If the snow is not too deep to get from here to town anyway. I did not know the dosing for that. Pred does blow. Yes, I started out with the blister pack, which helped till I got down to three a day. At least I got two nights sleep then. So, we went to a long taper. That is what I just finished. I am afraid of the stuff, but it helped a lot- while I was on it it helped. Needless to say, I am finished with that shit for a while. It did not break this cycle and my body can't take anymore of it. Painpills suck too. I took one yesterday as well. It killed the shadows for 2-3 hours. It never helps the one in progress, but does give me few PF hours before the next hit. I know, addiction and rebounds are likely to occur, but one to two pills in 24 hours hasn't caused caused addiction. The rest of the white little pills just sit there for the next really bad day. Too infrequent dosing for that bear to start re-bounding. Verapamil is at 360 and I can't take a higher dose. My BP is normally 102/78. With the Verap, it is lower. OK during the day, but nights it slows during sleep. If I breath deep ten times and then take a reading, it will be 86/60 or so. Bad when sleeping. Last night, with the breathing, it was 127/85 (can you say PAIN >) when I was approaching the peak. My pulse was 102 at the time too. I need to keep a log of this, not that the frigging De would read it and act on it. Nice guy, but not knowledgeable enough for 2011. He has lots of female migraineurs (spell?) and a few male CHer's. He doesn't know what to do with a female CHer who is allergic to damn near everything, has low BP, and weights in at 110 now. My iris is changing colors and he did not know that that can be a sign of Horners. At this point, he finds me a pest who knows too much and can't be fixed. Wonder what his face would look like if I said I was thinking about returning to the 60's to do some things I missed doing back then? This post took an hour to write? :oYep, sure did. Coffee is killing my stomach, so am off to take some daily meds and say 'Good Morning' to my hubby. He too is sleep deprived and I feel like a real heel for that. Thanks for the support and funny picking at each other. Just like a good family would do at a get together. 8-) Picking and funnies are good medicine! When I nap today, I will dream of flowers. 8-) Maybe before long I will have some pretty ones in my minds eye. After all, spring will come, won't it? spiny too tired to be funny today PS: That should have been .03%er, not 03% in my original post. Really makes one feel small in this big world.

I shoot: competitively and hunting. OK. Now that that is said and out there, I can go on to the rest. I read, raise cows, chickens, and ducks. I garden and plant lots of flowers. 8-) Flowers make me happy. We have two businesses, as well. Currently, my other hobby is napping. :-[ spiny

Lovely, Finished the Pred. Friday. Doing really very well for a few days. Shadows pretty constant, guess that's a Kip3/4. But, actually started back on Benedryl at bedtime for allergies since I am off extra meds. Last night: Hello my beastie. And you are here why? O2 for 10-15 minutes made it all better. Well, the shadow came in a few minutes later. OK. Take my Vits. and Benedryl and hit the sack. Half hour later, ready for sleep, head down and 'Hello my beastie' again! > OK OK Back to the O2 and stay longer after it is gone this time. Good to go. Sit up for 1/2 hour so I don't get a shadow and then back to head down, sleep now. An hour later, eyes pop open and it is "Hello" again!!! Knowing there is no escape - Kip 7/8 cooking inside my temple already. Up and off to the tank (I think we are having an affair). This time, I sit up for an hour, hoping to avoid a repeat. It works! 8-) As soon as that 'required' 4 hours we need is reached, I am up and about. OK, I guess. Two hours later, I go back for a nap. Had coffee and meds and Vits. Nod off with hubby on the hook for a wake up call in 1 1/2 hours. Nope, up in 30 minutes with another - Kip7/8 when I get up. 'nother cup of strong coffee and my affair with the tank. I am sick of coffee. Shadows all day. Weather sucks, barometric dropping. Raining for two days now. Supposed to turn cold tomorrow, but my hubby just came in and said it was snowing! Well, guess I just wanted to talk to someone who 'got it'. Anyone else and most of the time I get something about how their migraine is killing them. Sometimes even going into great detail about migraine pain. To those 99%er's out there? Meet my >03%. > Yes, I am 'issed. >Â With something so uncommon, who is actually going to spend the money on research and marketing? I know, it is that little thing called profit. Everyone in business has to make it or they are going to go broke. Yes, I am keeping up with the research that is being done. But, I will probably be dead when they bring it to market. Just not enough return on investment. Thanks for letting me rant. I do not look forward to falling asleep. spiny who is feeling particularly prickly today

I volunteer to help. After all, a med made EXPRESSLY for CH would be wonderful, wouldn't it? 8-) I bet it would beat the sometimes lousy seconds we get from the drug companies! > spiny

Hi Renee, I'm new here too. These are the greatest group of people to talk to when everything else sucks or is wonderful. They share your joy and pain. I do understand your 'needle play' and perhaps you have tried cuts too. Then there is the 'hook suspension' route. My daughter has tried them all. She has had severe scoliosis since she was 8 and had to wear a body brace 23 hours a day. You can only guess at the mental anguish/damage of grade school/middle school with your body encased in plastic! Then, there is the pain of the brace itself. After that she had two surgeries and will need more later. So, her life was painful in many ways. It still is to some degree. I learned about these things thru her. She preferred them to pills with side effects. I don't blame her, but it took some years for me to get used to the idea. Yes, needles, hooks, and cuts must be properly placed to prevent permanent damage and, self piercing is tough. But those endorphins do get released. O2 has been a savior for me. I am currently in low cycle, just coming off high. Been daily/nightly since Sept 15th. Since I listened and got my O2, I can stop the octopus in its' tracks inside of 5 minutes. They remain on schedule tho and return at their appointed time. However, with the O2, I don't have to suffer in between. Just know that when I wake again, go straight to the O2. Sure beats destroying the headboard by bending the bars or squshing my 4 pack of Charmin for an hour in the bathroom. I have deformed a lot of toilet paper this year. :-[ Two things: I got a welder tank from the welders supply. My idiot Dr said "O2 is too expensive to prescribe" so I went the other route. Welding O2 tank (I get the 90 tank - a mid size M tank that weighs about 50lbs). Hooked it up to a 0-25 lpm regulator bought online and the non-rebreather mask bought here on the sister site. Works great. Usually 3 minutes. Then I stay on for the same # of breaths it took to get the octopus out of my head. If it comes back soon, I go back and stay on it longer. I use the mouthpiece, not the mask. I can't stand anything on my face. It sets the trigeminal nerve off worse than it is already. Also, I rock. My version of head banging. And, if you were to fall asleep you won't suffocate, although you do have to worry about high O2 levels accumulating in the room. You can also get an 'on demand' mask. This would prevent the ambient O2 I think. At the time I got the set-up, I was getting hit every two hours from 8:00pm to 3:00am. My what I will call my 'manic phase' would last 45 minutes to two hours. Any time after 3:00am, I would grab a strong cup of coffee and chug it. I still have a cup every day between 2-4 pm. I can't stand energy drinks, but strong coffee is a big help. Don't feel weird at all. The world is weird - I am fine. Stay safe and PF. Sherry

Hi Jeff, I'm new, but I have had CH since 1997 or so. I also have Scoliosis and so do both my daughters. No connection. They are FINALLY researching and finding Scoliosis is actually inherited! Usually from mother to daughter since it is much more common in females. My son has a bit of a curve as well. Duke did the study. Anyway, the muscle difference is very common with the curve. Think: Curve to left, muscles on left are more contracted all the time and muscles on the right are more stretched. Therefore, muscles on the right appear much smaller than those on the left. It can also come with a rotation left or right. This presents problems with breathing as one side is compressed and the lung on that side is affected. Sounds odd, I am sure, but the 'S' curve (actually 2 curves) is easier on you physically because you are more balanced. Two of us have the single curve (lumbar), which makes you think one leg is longer than the other. It will also stress your lumbar area a lot, depending on the degree of curvature. Read: Lumbar Fusion sometime after 35 if you do NO heavy work/workout or after 50 if you do too much heavy lifting. My 27 year old has had all thoracic vertebrae fused. She has the S with the twist. She has had two surgeries and will have more in the years to come. First surgeon wanted to do a full fusion at 12! > Surgery is usually put off till it reaches 40-50 degrees. I had lumbar fusion 5 years ago. Did not help or hurt my CH. I was one of those heavy lifters. Well, you work with men, you work like a man. After 20 years, my 5'5" was 5'3" and I was bone on bone with an additional blown disk and another herniated disk. Wish to hell it HAD helped! The suspension thing will most likely provide some temporary relief if you can do it. Try one thing. Measure your height when you first get up and then at bedtime. You will likely see a 'shrink' during the day. You will compress more over the course of the day than folks with lovely straight backs do. How's New Orleans doing these days? When I left Lake Charles, the billboard saying "Last one out, turn out the lights." was already up! Saints rock! ;D Best of luck to you and stay PF! spiny