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Everything posted by spiny

  1. Mine had a cardiac when I told him I was huffing welding O2 at 25LPM! But, he was open to listening when I told him that I had joined a Cluster Headache Site and was talking about what prescribed meds worked and what did not and ALL the side effects from these sucky meds! Even gave me a list of possible meds to try next to present to the board for feedback. He actually seemed to be glad that I had reached out and contacted a whole community of fellow sufferers and didn't feel so isolated anymore. It probably took some of the heat off for him as well. He treats many neurological diseases, not just headaches, so his expertise is not at 100% (if there is such a thing) in the CH department. Baby steps for him and me seem to be working well. Besides, he did save my life from carbarzipine (sp?) toxicity several years ago.
  2. Linda: What Jeebs said! My mother and son have migraines. Otherwise, no headache issues from grandparents forward. But, mine started exactly 3 months after a traumatic injury to the left side of my face that chipped my jaw among other things. The concussion knocked me out for about 20 minutes. I am not convinced that trauma is a major cause of CH, but it seems to have had an affect in my case. Neuro's at the time said that the 3 month onset was consistent with headaches caused by trauma.
  3. spiny

    am I chronic?

    My understanding is that you pretty much have to figure out what works for you. Alternate, up the dose, stay with one? I'm not the best member to advise on this, but reading a lot here in the past few months has led me to the understanding that it is a highly individual process. Someone who is better at this aspect will be here soon to help. 8-)
  4. Such good news! [smiley=2vrolijk_08.gif] Now, the lecture: O2, O2, O2. You can stop it in its' tracks with caffeine and O2. Wouldn't that be lovely? Won't kill the cycle, but definitely gives you a measure of control over the pain. : PFDAN 8-) 8-)
  5. Sundown: Omega-3 1200mg & B Super Maxi 1000% of B's and 100% Folic Acid Nature Made: 550mg Potassium Gluconate Spring Valley: D-3 1000IU Citracal: Calcium, magnesium + D 1200mg (this one does not have the zinc and whatever the other mineral was in it) Glass of OJ. I plan to start back on everything but the D3 next week. The Spring Valley was a different brand from what I started with on D-3, just what was available. I tried going down to 5000/day, but it didn't help. So, I just quit at that point. I don't understand it either Jeebs. But, desperate times and all that. : Currently having lunch with a second BEER! [smiley=2vrolijk_08.gif] That means I am now into my second 6 pack since Sept 2011!!! Gonna gain a pound.
  6. D3: My last lab in August of 2010 showed D, 25-hydroxy at 31.1. That was after working in multiple gardens since May. HDL at 67 and LDL at 132. Hemoglobin A1c at 6.1 So, I started the D3 in November I think. Perhaps the first of December. New tests: D 25-hydroxy at 101, HDL at 74 and LDL at 113. Hemoglobin at 5.7. So cholesterol down, good cholesterol up, D 25-hydroxy up and Hemoglobin down. However, my tongue has been raw for months now. Makes food choices limited and most taste awful! I stopped the D on March 20th. Three days later, the rawness was gone and has only reappeared in minor form once. While this could be a good approach, it did not help my head at all. I gave it a several month test. Someone posted elsewhere that the D3 made them nauseated and their tongue was sore. Warnings do not list the tongue thing as a bad side affect, like being nauseated. But, I decided to quit to see the results. I have been basically PF since I STOPPED! Go figure. At least the cholesterol is better and the diabetes thing of Hemoglobin is down too. Perhaps starvation is a good thing? >
  7. spiny

    tune for you

    8-) Now, I am hooked Ricardo. Bookmarked and ready to download! Thank you for the link.
  8. Ah, Crystal has only been here for a few days and was diagnosed less than two weeks ago. She is relaying the personal info she has. That does not make her a 'mild' sufferer or anything else negative. She is new. Ricardo, I support your efforts to make everything 100% up to date and correct. You have done a ton of research. You are a font of knowledge. Also, you come off as much more of a jerk than my limited experience PMing showed you to be. I read your posts and make an effort to reply when I feel I have something to contribute or learn something new. I am sure that I am too 'chatty' for some and too dense for some and suffer too mildly for some. Oh well. Such is life. I am here. I left another board because of critics complaining that I did not put spaces between paragraphs in my FIRST post. Let's not criticize so much. Let's support more and teach more. Especially for new members. They don't know us and we don't know them. But, we do know their pain, family issues, Dr issues, and the rest of this $hit. We do know how to help them so lets just do that. Now, where is my beer?
  9. spiny

    am I chronic?

    I read somewhere to cut them in 1/2 lengthwise prior to drying. Not sure that one makes any sense. :-?
  10. How in the hell was he supposed to 'relax' in that condition. > Jeez, the dumbass things docs and do.
  11. Jeff: back flips We are ready to watch that video when ya do it!
  12. Jeebs:Â 8-) 8-) Crystal: Coffee and Energy drinks (if you can hack them). I bet you will still sleep in 30 minutes or so after slamming one. Take it when the hit STARTS!!!!!! Just like the O2, the sooner you get it the faster you get rid of the dragon. And the lower a Kip you have to deal with. 8-) See how much better you are this evening? Even after last night? Keep marching and you will WIN.
  13. Gotta love that 'sinus infection' thing. Had the surgery for it about 15 years ago. Doesn't help. > Nor did straightening my septum. GP will always go for the sinus thing, in my experience. YES!!!!!!!! MSG is a trigger for some. Avoid it like the plague. Or, if you are feeling adventurous, try it again and prove it is a trigger for you. Me. I would 'run away, run away'. Keep me in mind for the simple chart thing. 8-) Poop, now I will have to get Microsoft Office again.
  14. ;D ;D ;D AWESOME!! Yes, hyperventilate while the pain is intense. As it recedes, you can and should resume normal breathing.Focus on your breathing at first: Big exhale - hard, Big inhale. Repeat. It seems to offer the quickest relief for me and some others. You want to get rid of the CO2. The main reason for the 25LPM is to support this type of breathing when your are in extreme pain. If you can't get a script ASAP, go for the welding set-up. Many of us use it. Cheap and no Dr hassle over the 25LPM. You are doing GREAT Crystal. With the neck pain, which really can make life hell all by itself, perhaps you can get a muscle relaxant for bedtime only. It can help a lot. Also, massage, heat, and finding that stupid 'sweet spot' of comfort. During high cycle, my neck pain is a constant killer: can't look left at all, or up or down. It will not massage out easily either. One other suggestion. I do not sleep on my CH side when in cycle. It will set one off. I have learned to use the other side or back sleep with the pillow on edge to prevent rolling in my sleep to wake the dragon. Might help. Oh, they tried anti-psychotics for my neck pain. Total waste. Nothing like an hour of 'getting something done' to brighten your day. May you have many more bright days ahead. You have a PM. Log in and you will see if you have any new messages at the top of the screen where it says 'welcome'. Oops, I think you found it! 8-)
  15. Read the links re busting and detox. Your answers are there! Never give up your O2. It will remain your friend, no matter what.
  16. Didn't Pixie say that it worked for her? From my limited reading here, she is not the only one to see improvement in migraines.
  17. That sucks Crystal! I hope you got a decent nights sleep. That was a really rough night. Hopefully, the Neuro will see you ASAP. I am really glad you did get to try the O2. It is a miracle in a tank. All the best and stay in touch. Lots of people on here are pulling for you.
  18. spiny

    am I chronic?

    From what I have read, if you can turn off the heat to the dehydrator, it should work great.
  19. How many days since you busted? If it is over three and the relief you had is not now so good, you metabolism may be fast and the effect is already wearing off. I would give it another day to see if this is rogue or ramp-up. Then, decide when to hit it again. Hot and cold: Yep. One side of my head pours sweat and the rest of me freezes. Bet if you check in the mirror under low light you will find that the pupil on the CH side stays constricted even in low light. Kind of weird, but common. Sucks, but your symptoms seem pretty classic. Keep us posted. Nothing is the same as being able to talk to people who have been where you are right now.
  20. Crystal, I really understand how heartbreaking it is to be in the car in agony while your son is running his race. It can make you feel like a less than supportive Mom. You are NOT! You went, you did your best, and you still got hit. But, you got up and went back to support his efforts as soon as you could right? That makes you an excellent Mom. Get the O2. Go to the sister site and order the non-rebreather mask. About 28.00. Go online and order a 25LPM regulator, about 55.00. Go to welding supply. Buy a tank, at least 60cf or 90cf of O2. You will pay about 100.00 - 150.00 for the tank. It will cost less than 30.00 to fill it. By purchasing the tank, you can get any supply service to fill it. Renting ties you to one supplier. Either of these tanks will fit in my MX5 passenger seat. They last and are portable, even by me. When you leave home, take the tank with you!!!!!! Get your son to help load it and tell him that by having it you will only miss 5 or 10 minutes of his event. He will be happy I suspect. With the mask, it is available at our sister site Clusterheadaches.com. They know your pain and will ship immediately. With the regulator, make sure one of the ports has a 'barb'. This is where you connect the hose from the mask. You do not need a script for the regulator, but get 25LPM for better relief. Do not tell the O2 supplier that you are using it for a medical condition. Make something up!!!!! Your husband said to get it so you are there to purchase. As a woman, you won't get many questions, but you will get your tank. These three purchases will change your life. Your pain will end in 5-10 minutes. You will continue to breath it for the same amount of time it took to kill the Dragon or the same number of breaths. At first, hyperventilate and force all the Co2 out of your lungs. See your lungs as a beach ball. Fill it up, hard and empty it, hard. As the pain lessens, resume normal breathing. Don't cheat and cut the session short. You will most likely pay with another hit in short order. You are now taking control of this $hit. That is the MOST important thing. It gives you POWER over your life. You will no longer be a the beck and call of the beast. As for not wanting to talk to anyone,, totally agree. No one around you can possibly understand the torture you are going through. They want to, but there is no way. Even to listen to someone seems to make you focus your brain and that results in more severe pain. Have a 'safe' place to deal with it by yourself. It helps. While my 'safe' place is my bedroom, I would prefer a 'fairy shack' out back with the only key to it tatooed on my arm! 8-)Â The hardest thing is for your loved ones to accept that there is nothing they can do when you are hurting except leave you alone. It leaves them feeling powerless to help and that sucks. Your husband seems to be very supporting from what you have written. Tell him thank you. Let him and the kids know what they can to to help. Start dinner, feed the dog, give you privacy. Pick wild flowers, whatever. It will make you and them feel better. It took my loving husband years to understand that most supporters feel just the way he does and most suffers react the same way I do. Dan and Nat Geo opened his eyes big time. Now, it was not 'just a horrid headache' nor was I soft with a low tolerance for pain. Something about seeing two grown men, on two different shows, writhing in pain, ripping out their hair and plowing up the carpet with their faces changed his whole outlook. The big bottom line: Ya got dealt a $hitty hand, there is no cure, you are your own best advocate, researcher, and doctor. You have shown strong character already in taking the positive steps you have already taken. You have courage. You are on the path to the goal line. I am sure that you will not drop the ball. You are setting a wonderful example for your family. 8-) spiny who admires you and your hubby
  21. Crystal, Yes, quitting smoking is a great idea. Loosing weight too. BUT, they don't make a difference with CH. > What we have is not caused by either. There are plenty here who are WBP - Walking Bean Poles. Trust me, you can be anorexic and not kill the Dragon. You can quit smoking, will not help. Good advice for general health, but a bitter carrot for Cher's. You do it and still have the beast. 'They' said this would get rid of it. THEY LIED. Don't forget drinking. If we would all quit drinking, this would go away. Well, many quit TOTALLY when in cycle to no effect. Don't take the carrot. Also, menopause will not kill it. I am 63, long past the change and mine are WORSE!! Read up on your Hypothalamus and all it controls. You will be smarter than your Dr's and amazed at the many things you fight day to day that are controlled by this tiny fragment in your brain. CH is most likely caused by this tiny piece of your anatomy. They will say what they will. I am 20 pounds underweight. I saw my neuro two weeks ago. He said that 'Once we get you out of this pain, we will deal with that." My neuro prescribed Topamax. He told me to post on line about our other alternatives. Well, I found out Topamax causes weight loss. Meanwhile, I can't do the normal work required for my household. But, this is the drug I am to take to get to where I can eat. Do you see where I am going here? They are STOOPID. Again, advocate for yourself. Let go of old notions about Dr's and medicine. Take your life into your own hands. Read about the D3 method. It is located at Clusterheadaches.com, easy to find. Take the vitamins. They may not help with the CH, but you will feel better. You will know that you are doing something to help yourself. You will be empowered. Get your O2. You will feel empowered. Use it properly and kick ass without a pill. I really hope that I did not step on your toes with this Crystal. I have had to jump some pretty HUGE barriers in the last six months, but they get smaller as you go. All the best to you and yours. Let me know if I have offended you you.
  22. spiny

    am I chronic?

    No sweat. They do have a lot to read and I understand the NEED to finish it off. But, you do have it 'on the run' apparently. 8-) All the best!
  23. I went looking up here last weekend, but they are not out yet. Then I read where they come out here when the apple trees bloom and they are almost ready now. 8-) Another week or two and I hope to have some in my basket! Thanks for the pics DD. Feel the jealously?
  24. spiny

    am I chronic?

    Imoorman, You should wait 5 days between either med. If you are seeing improvement like you are, you might stay with what is already working. You will continue to improve or after 3-5 days, the $hit will start back harder again. Your initial improvement sounds great. If the Ch is not gone after those few days, hit it again. Try to stretch out dosing when it becomes possible with the pain relief. If one med is working you might just stick with it for several weeks. No need to change if you have success. But waiting 5 days is pretty standard. Slap-backs for a day or two after dosing is a good sign, not a sign the medicine is not working. Read, read, read the archives!!!! All the best.
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