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Everything posted by spiny

  1. 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.
  2. Snowflake, this is awesome!! Welcome to your new life.
  3. 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!!!!
  4. 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!!!
  5. 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!
  6. 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!!
  7. 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 f
  8. Happy New Year's to you Luis!! Keep that winning streak going!
  9. Oh, I definitely agree with that statement Kat! A headache specialist is most always better.
  10. 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 p
  11. Sounds like great progress Seff!! Yes, keep us posted!
  12. I look forward to your followup Seff! Many thanks for posting this! ATB!
  13. 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
  14. Happy Anniversary xBoss! And Happy Solstice to all! Feed the Faeries!
  15. Mark, you or your PCP can order the test for D3, calcium, and PTH. You can begin the regimen and get tested in a week or two if that is the way the chips fall. Getting on it quickly is one objective. See the first picture that XXX, batch, put up of six vitamins? Buy those and take as he directs. That is the base of the Regimen. That should simplify it enough to begin by yourself I hope. Those vitamins are available most everywhere. The K2 can be a problem to locate, but is easily ordered from Amazon. If you cannot find the particular D3 Brand that is now recommended, use another brand of
  16. Hey there!! Happy to read that busting is working for you! Keep going. We all know this is not often a 'once and done' thing. Eight months without maintenance busting is pretty darn good! Don't get lost in the snow up there!!!
  17. jon - 'Please work. please work!!! Wait, how can you work when I can't get you??????' Perfect!!!
  18. Hey there!! Welcome too! Do you want a pretty much sure fire test? It will give you a Cluster - Nitroglycerin. Mr 'I'm the Doctor' needs to check his lack of knowledge. He can give you a tab of Nitro and be standing by with the O2 when you lose your $hit from the pain!! JERK. Wonder if he even knows that???? I too am female. I went to my current Neuro and he tried the same mess. "Must be migraines since women don't get Clusters.' Really? I took my husband the next visit in a week and he glared at the man and said " I want my wife back. She is in hell from 8pm every night till 6am eve
  19. He will check in today. I spoke to him and he will provide what updates are available.
  20. I feel increased pressure in my eye when an attack is on the way during the day. It feels like the eye itself is swollen. If you search the Trigeminal Nerve, you will see the whole area affected by your hit. It is the whole side of your face and head. All served by the same nerve, it just branches off all over the place. I would see the eye doctor about the swelling though. You can never be too careful where your eyes are concerned.
  21. You can PM me directly from the board. Just click on my handle and it will open my profile and include a 'message' bar. I am doing well, thanks for asking!! Check your message box.
  22. I have read where Tinnitus is a rather common problem post COVID. If you search, you will find a lot of hits for this issue. I found no research regarding COVID and Clusters. Tinnitus? Yes, there are a lot of references to COVID patients having it long term after recovery. It sucks!!!
  23. I think there is still an annual 'bicycle ride' to honor the discovery. Pretty amazing story there.
  24. You seem to be suffering from anxiety and depression, in addition to the CH. That is another can of worms of course. Let us know how that part is going post infusion please? They might be both caused by the anticipation of a cycle and vanish when the infusions are over and you feel safe. If they do not, then you might want to seek help from you PCP regarding both of them. Hugs!! Please keep us in the loop and get the vitamins for the D3!!!
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