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Everything posted by spiny

  1. 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.
  2. 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!!
  3. 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
  4. 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.
  5. 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
  6. Neat! We all seem to have some different or similar feeling. The one that I am referring to is the one when you KNOW you are going to be able to sleep or rest or work in peace for a few hours, not minutes. Not when a cycle is over. I never know THAT either. Sometimes I KNOW that from the feeling inside my head. The transmitters my be located in the sclera or skin or somewhere else, but I feel it inside my skull. Unlike any other sensation that I have had from some activity or inactivity. The same as I feel the swelling and pressure of the Shadow for long periods of time, but there is no swelling to be seen. When I have the good fortune to feel that, it is one of the most pleasurable, for lack of a better word, things in my world. It means the end of 8-9 hours of being consumed. Perhaps that clarifies a bit.
  7. Well, my village does not have any to be found. The Health Vitamin Store is closed, probably till January 15th! Online, here I come.
  8. Weather change hit. I thought so with the 'little' one going on in my head. Yep, barometric is down and rain is here. Going to town (I really think it is a village!) to see what I can find. We have 2 Pharmacy's and one Health Food/Vitamin store. Maybe I will get lucky! Lt2, I have a lot of what you describe. The night time, after falling asleep 'furies' are the worst and boy, are they clock like. Meaning that they occur at very regular intervals ALL night! Not just one or two. Always at least four. Apparently REM is the trigger so I don't get any. Until today, I have been PF since 1:00AM Christmas Day. That is my longest break in 4 months. Cut out the diazepam (?sp) when I started the Melatonin. Had been taking one at bedtime most days since back surgery Now, I have cut back the Melatonin due to the groggy wake up it caused. Today, my head and my a$$ are once again not wired together. Scatterbrained is another way to say it I suppose. And that horrible feeling all over of running a V8 on 5 cylinders. Focus would be a world of improvement!!!! I take Lyrica, but can only tolerate one 75mg a day. Side effects were too severe. I'm currently trying to eliminate all Rx from my day with the exception of Singulair for multiple allergies. I'm off and will let you know if I can find any GABA locally. Who knows, perhaps I will be able to enjoy a beer again!
  9. Dude, that is one heckuva read! I admire your research.
  10. LT2, Thanks. I will look for some when I am out on the road today. REM usually sets me off. I will let you know how it goes. Right now, I am going to WIKI to take a look. Since I know my Beta waves are screwed, this could be a big bullet for me. Currently getting a small one, just burn and crawling around my temple. Not what I would call an issue, but would be at 2-3 on the KIP scale. Not something I normally would treat, but maybe I should.
  11. spiny

    Thanks Santa

    Another lovely PF night! Still cutting back on the Verapamil. Down to one Lyrica a day. Melatonin is down to 2-3 from 5 a night. Back to drinking coffee at noon and 6pm with no ill effects. No pain meds for a week plus. Doing D3 for over a month now. Going to start the GABA and delete another 80mg of Verapamil if going down the mountain doesn't kick it all back in again. Will also monitor the weather as dropping barometric pressure will kick the Dragon back to active for me. Todays dental visit will be a strong test. Have to go to the dentist and then 50 miles over and down to the dental lab so that hopefully they don't screw up again! All in all I will be traveling about 100 miles and up/down about 1500 feet. Maybe on its way out of my life for a while! With all of my new bullets I may be able to keep it at bay. We will see how it handles stress today.
  12. Not the normal post here, but I'm doing it anyway. Thursday and Friday of last week were horrible. PAIN and stress had taken over everything and I was running on the 'one raw nerve' left. I turned into the 'dive bombing Mockingbird' from hell everywhere I went. Pharmacy didn't have my script - I grumped rather loudly. :-? Idiot cut me off in traffic. Grocery didn't have my aspirin or Rye Bread. I started to boil. Then, they decided to no longer carry my dogs late night snack. That ripped it. > By the time I left I was a bad nut case and racing for home and the O2. I decided that those extra two cups of coffee per day were the culprit. Just a bad case of the jitters from extra caffeine. So, Saturday, since I could no longer stand myself, I left off the noon and 5:00 caffeine. Big mistake. By 7:00pm, I had had 5 strong hits. I kept leaving the kitchen to play O2. Gave the cheery 'I'll be right back.' Christmas dinner served and the family raved about the food. 8-) I tried to hang on and watch a program with family, but bailed before the end at 8:00. Husband came in about 5 minutes later. For the first time ever, I cut loose on him! :-[ Then, ran to the bathroom for privacy during the hit. To hell with the O2, staying out of sight was WAY more important to me at that point. Two more big hits by 1:00am. Both woke me up and were firing hot when my feet hit the floor. Drained the tank. UP at 5:00am to hit the coffee. Sore neck, but no shadows or hits. Not all Christmas Day or all last night. Over 24 hours PF! ;D WOW!!!! I think the Fat Man must be able to read minds and doesn't need letters! 8-) After many days of 6-8 big ones, PF was a true miracle. Weird. Lovely things in life Do happen. Thanks Santa! [smiley=happy.gif] The many things that I have learned here over the last month or two have been some real 'life-savers'. Thanks to all of you who have responded and helped.Â
  13. Lt. 2, Is this something you need prescribed or can you get it on your own? I am discontinuing all the meds I can at this point: Progesterone, Lyrica, Verapamil. Two will remain: Singulair and Prylosec at prescription levels, not otc Where do I start research? What can you tell us online that you have already researched? For reasons stated earlier, I am VERY interested. The EEG was done when I first met the Dragon in my 20's. Lately, they don't seem to use it or place credence to results obtained from one. Merry Christmas! Stay PF and keep up the updates!
  14. Hello BP, I'm new here, but you came to the right place to get information and converse with people who KNOW how crippling this pain can be. The only suggestion that I can make is to up the O2. I use 25LPM to start and then 15 or 20LPM when I am no longer writhing in pain. The higher flow seems to be necessary for many, if not most. Since you already have a unit, can you get a regulator for 25 or 50LPM? Fifteen just seems a bit too low for good relief. Regulators can be bought over the Net for about $50.00 and no script needed. In my life, this will kill the Dragon at least for a while. However, I do find that it will still return, on schedule. But, as I explained to my husband, it still beats the H... out of suffering at a 8-10 for 1-2 hours. Also, after I kick it back, sometimes the next 4-5 hits are weaker and shorter in duration. If you are currently prescribed O2 I doubt that higher would be a bad thing. Be sure to completely empty your lungs with force and then inhale. Picture a beach ball, force the air out and then the good O2 coming in to re-inflate your lungs. Expand top, bottom (diaphragm pushed down and up), and sides. Even though I no longer need to visualize the ball, it helps to focus my attention away from the pain. Others have had some success going to the ER for emergency O2. Perhaps you could try that over the holiday if needed. Tell them you need high flow O2, at least 25LPM with a non-rebreather mask. Not a canula!!!!!!! They DON'T work! There will be more folks around the board after the holiday. I didn't want to leave you alone and in pain, ya know? I have found it really helps to get a reply from someone.There are lots of things to try, so don't give up! 8-) As for the other, I have worked with up to 480 volts myself. That is some bad $hit! > Hopefully the 'city' that allowed this is paying for EVERYTHING! > Stay safe, spiny
  15. Please keep updating. I will have to start from ground zero on this as I know nothing about GABA. But, I do know that I have 'unusual' brain wave patterns based on an EEG. Dr. couldn't figure it out, but he did mention they were Beta waves. Hmmmm
  16. Second that! I understand that Santa likes cheese too. I found a pile of rather rough sliced Cheddar and Merlo (SP?) on the hearth one year!!! Yum. Santa was good to the kids THAT year. 8-)
  17. I second Bejeeber on the bumper sticker. We could actually do this too! I will research the minimum number and cost. Going to have one made up anyway "Odie for President". 8-) The eager to please, drooling, anything you want dog in Garfield.
  18. Done. Too many are oblivious to our shared pain.
  19. If we could actually SAY we were out due to a headache and not risk being docked or let go, they would give a much better picture of the issue at the workplace! Frequently we have to resort to stomach bug or sinus infection as a cover and that sucks! > Our small numbers (CHers) make it almost certain that a med geared for us is not very likely to make it to market unless it helps migraine as well! > So, here's to BOL working for those heads as well. In my book, it will be amazing if we actually get something that was designed for us, not just a side-bar for Rx designed for something else that works for some Chers. Hope that makes sense to someone else. Did you know that 'driving under the influence' includes prescribed meds as well as booze and illegal stuff? So, you have to be careful so as not to get a DUI. Sort of understandable I guess.
  20. spiny


    Thanks Chad! I have O2 and have been on the D3, minus the calcium for 6 weeks now. I was on the calcium too, but the Verap I have is ER so the eight hour separation was impossible. Trying to get my idiot Dr. to change it to SR so I can put the calcium back. I will try your method. I just have to remember to keep high protein snacks in my pocket! Not always that smart. Still reading on the other. thanks and PF holiday and New Year to you!
  21. spiny


    Thanks Bejeeber! On NIH and Wikipedia that is Melatonin apparently. :-[ I could not find the thread with the Latin name, what you gave me I believe!
  22. spiny


    What brand has the right mix? Mine just says Melatonin, B-6 and fillers. Thanks spiny who is OVER the flu ;D
  23. when you are thru those constant series of CH's ? I seem to get about 4-8 in the evenings and at night. O2 helps for most, but then I just get to where the tank isn't doing it anymore for the series of the day. At that point, I hit the coffee (at 11pm or 1am, depending) and plan on sitting straight up for about 2 hours. Leaning back makes my neck hurt more and lying down will start everything all over again. But, I have noticed a very odd but pleasurable feeling. It is like my brain is relaxing and expanding. I can feel it fill my cranium from side to side again. 8-) Almost a relaxation in my head. Well, actually that is what it does feel like - my brain relaxing. BTW, I do not believe their there are pain receptors in the ole grey & white. That is what makes it rather remarkable to feel it happen. Lately, that is the most pleasurable feeling, because it means that I will get to sleep for a few hours, not minutes. Anyone have something that they attach to The End? Not just to the end of pain, but to the end for the evening or day. spiny who did not get this lovely sensation last night >
  24. spiny

    D3 Update

    Sundown Naturals No Burp 1400mg each. Works. No Burps. They are Enteric Coated. EPA=700mg DHA=280mg. How 1,400mg fish oil = 980mg of Omega-3 fatty acids I don't know. spiny Edit to add: No fish taste either. 8-)
  25. Hi Renee, Depends for me. Sometimes with high Kip which I would call a 10, I am very agitated. I have bent my headboard grabbing a couple of the metal rods and pulled one while pushing the other. Not bad for a shrimp. Others, I am frantically lightly touching my face with a cool washcloth to find the sweet spot of pain relief while the rest of me is in a frenzy waiting for the tub to get enough scalding water in for me to get in and rock. Then, you have the sit with the O2 and gently rock on the floor times too. This go around, my sinuses are so clogged on my CH side that I do not get any runny nose or eye just before what is going to be a real hit like I used to. I really miss that early warning system. > It always told me when to leave the common room and head into private space. Now, I have to wait and see if the burn is really going to go all out or just flicker. Or I can lie down, that will tell me within about 5 minutes if I need to head to the tank, that 'other love of my life'! My dragon has morphed over time. Perhaps most do. We will see when you get more responses. Looking forward to reading them. spiny who feels like chit today >
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