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spiny

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Everything posted by spiny

  1. Many cannot participate due to age as well. Thanks for jumping in there again Fun Times!!!!
  2. Has it stopped your hits???? I'm thinking that it must have or you would not still be taking it. It is hard on your guts unfortunately.
  3. Bah Humbug! It will not allow me to cut and paste into this reply! So, starting over, for the third time now!! Welcome to the board John!!! Sorry you have to be here, but very happy that you found us. CHF got a reply in while I was fighting the system, so I will truncate mine a bit. Todays' COPD patients mostly use a cannula, not a mask. So, they are getting an O2 boost, but not breathing pure O2. These are children. And they are talking about staying on the O2 for long periods of time. In the 60's/70's they could not acquire enough ultra pure O2 for premature infants and had to use the lower purity one. Imagine their shock when they found that they now had babies that were no longer being blinded by the O2 they were given in the hospital for weeks or months! Prior to that incident, preemies went blind. Babies and children respond differently than adults do with many things. Second, if you are concerned, then do some pre-breathing on your way to the O2. Inhale deep, hold, then exhale hard and fully, just like you should on your tank. Grab some caffeine on the way and slam that down. This will reduce the time needed on the tank most likely. Their MRI showed that it affected the hypothalamus. That is what is wrong with us according to current theory, so a good kick in the butt is what it needs apparently. O2 works!! Plain and simple. What are you doing for your head now? Some background would be helpful. Do you have O2 to abort your hits?
  4. This is wonderful Snowflake! I would suggest that you get your levels checked again before you would normally have a cycle. If your level is still below 80 or around 80, I suggest that you up the D for a month or more to provide your head with a buffer. I keep mine at around 100. ATB!!!!!
  5. So, I should get off my heating pad and do 'something else'? Great research Jeebs!!!
  6. Rainmaker, what a wonderful outcome for you!! I am delighted with your success in becoming PF!! Thanks for the update! May it continue forever!!
  7. Welcome Squizzlet! I do not get this at all. It sounds wretched!! Are your Ch's the same? Or have they changed too? Hopefully a member who has both will be along with ideas soon. Your symptoms do not fit normal CH of course, but do sound concerning. The tingling of your hands and the temp swings make me wonder. Do you have a Neuro that you could see?
  8. Stephen, by bet is on the D3 Regimen. It has done so much for so many!!! My last cycle was 8 months long, all night, every night. That was over 3 years ago now.. First I noticed the ramp up was slowed and the hits were lower on the pain scale. Then they stopped. Yes, I do still get the occasional hit. But no cycle!!!! If you ever want to 'test' the regimen, then stop for two days. That is all that it takes for me to get hit again. Then back on the vitamins and the hits vanish again. Congratulations on your new life!
  9. That is soo relatable Drewbie. When I had an attack of TN, it was like my bottom teeth were humped up where they should have been the valleys for the cusps from above. Sleeping on my back on the sofa kept them slightly ajar so that they did not touch and set off the pain. Nor could I roll my head to the side to cause pressure from with out. The eating being a 'trigger'is classic for TN, as you likely have found out by now! Or brushing your teeth, etc. There are different levels of pain with it too. I had to look up Keto Flu! I agree with your analysis there too! My husband has begun Keto this winter and it does require some adjustment from your body. He too, exhibited symptoms of the mental stress for a while. I am so happy that you are in a much better place mentally!! It does weigh on your mind in oh so many ways. Please let us know how the visit goes today! ATB!!!
  10. Perhaps a silly question, but has your Neuro mentioned Trigeminal Neuralgia to you? I ask because you state that the pain has moved to the jaw and teeth. Well, that nerve serves all the nerves on one side of your face. From your forehead to your jaw. Specific nerve blocks work very well to treat it. The first time I had it, a Pred dose pack killed it for me. Just an idea I had. At any rate, it hurts like a witch too. I could not put my teeth together or touch my face when lying down. I spent a lot of time over a wood burner savoring the heat on my face and slept on the sofa. How are you doing now? Any better? Update?
  11. The extra sunshine I would not blame at all. I have worked in my gardens daily for hours all summer and had my D3 measure at 64ng in August!!! Then, by September 21st, I was back in cycle. At that point, I went on the D3 year round. And have not had a full cycle since! Until then, I thought that my gardening provided enough D to get through the summer in a better range for a CHer, say above 80ng. Nope. It did not. I highly recommend the D3 Regimen! Easy, good for you and cheap compared to Pharma.
  12. Drewbie, it seems like cycles are up this year all over. I suspect, along with others, that people did not get their normal amount of sunshine this past summer. That has resulted in lower than normal levels of D for many, which means that loading back up a bit can help. Perhaps ask your neuro to order a blood test for you.
  13. Snowflake, this is awesome!! Welcome to your new life.
  14. I second Fun Times. I have not had a full cycle for 3 -4 years now. I still get random hits on occasion, but no cycle!!!!
  15. I have taken Benadryl for decades and just stopped last week. I have not noticed a difference at this point, but that is not to say that I won't have an issue when the allergies kick in again. They used to give it to kids for allergies and adults too, who took it for years. Now there is something new being stated about not for long term use. So, I am trying to delete for a bit. The only 'bad' news on it that I have found is if you have kidney cancer, don't take it, So, I am not sure whey the new 10 days only thing is out there. Sorry!!!
  16. I follow the original that I started several years ago year round as it keeps me cycle free. That would be the first picture in the Wiki paper. For me, 10.000 units per day it the right amount. It keeps me cycle free and my D3 is in line with the standards the doctor wants too. I add C, just because it is a good idea in winter. Perhaps Batch - XXX - will see this post and add info for you. ATB!
  17. Hugs to you A-Z!!! You can pm if needed, but posting helps others too. So, I thank you for putting this up on the board!!
  18. I have only had a few panic attacks in my life and they ere not 'bad' ones. My daughter does suffer from them though and she won't touch pot. So, not sure that matters much, but it is the only connection I personally have to panic attacks. I would definitely try to talk to the doctor about something for depression. It is debilitating at times!! I have taken Wellbutrin and done well with that one, but likely THMH has better advice on the Zoloft. Please, don't beat yourself up. Stuff happens and we do what we can figure out to do to get through it. I don't know of any benefit for CH from smoking or eating pot, but some do post hit to relax. Keep us posted on how it goes? ATB!
  19. Happy New Year's to you Luis!! Keep that winning streak going!
  20. Oh, I definitely agree with that statement Kat! A headache specialist is most always better.
  21. He needs to open his mind!! 'If ya don't fit in this box, well, you must have sumpin else.' Yes, it is hard to find a good Neuro. But on occasion you can educate one. When I was young and chronic, I never had a night time hit. In 6-8 years of it. We don't fit in a box. I don't recall it stating that you had to be nocturnal to have CH anywhere. It does say 'often at night', not exclusively at night! So, you can ask him to show you where it says that you must have nocturnal attacks to have CH? Then bring out your copy from say any trusted source: Mayo Clinic, NIH, etc and ask him to point it out to you. And let him know that you know you are using up a lot of your precious time that he has allotted you, but this is needed. Google is your friend in this most likely. Might let him know that you have currently three 'friends' who have gone years without a nocturnal attack too. I'm going to go and look myself now. Ok. 'Occur mostly at night' is what is most often stated now it seems. That is from the Mayo. So, find another doctor if he won't listen and believe you. Or if you are up for it, he can get out the O2 and give you some Nitroglycerin and wait. You will get hit if you take it. Might be a really bad one too. But the sub-lingual bit can be a real 'b to the wall' test that opens his stupid eyes. Personally, if he won't come around, I would try to find another. But, the world is different now, so your options might be different too. I'm sorry that yu are having to deal with this garbage Kat.
  22. Sounds like great progress Seff!! Yes, keep us posted!
  23. I look forward to your followup Seff! Many thanks for posting this! ATB!
  24. Thank you Snowflake. It is our mission and pleasure to be of assistance. The great thing is, we have been there too! So, we get it. I am so delighted with your success!! It is a wonderful gift for my holiday. Out of cycle, for at least two weeks in my book, then you can test a trigger. The Regimen is great for your overall health, unlike the Pharma we are handed. I stay on it all year due to the health benefits I receive. I hope that you do the same! It is easier to prevent your D from dropping than to elevate it. Your body will thank you. May peace and love be with you.
  25. Happy Anniversary xBoss! And Happy Solstice to all! Feed the Faeries!
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