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spiny

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Everything posted by spiny

  1. 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!!!
  2. I think there is still an annual 'bicycle ride' to honor the discovery. Pretty amazing story there.
  3. 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!!!
  4. It most certainly is 'okay'! I know that many here have suffered the same angst that you are going through now. We worry till it shows and really worry if it just teases us with shadows. You have your appointment set for December? Very good. Now, just mark the days off on the calendar. The threat of a cycle can be horrifying. On the other hand, if it fails to show as expected, we are a nervous wreck! I don't think that numbing works. Or perhaps not for me. I keep the meds simple to fight with. Are you doing the D3 Regimen? Have you done it? It can provide amazing help for CH.
  5. Get that checked out before doing any meds prescribed!!!! When she sees the Cardio doc, let him know about Clusters and what is prescribed for them. Some are contraindicated with any heart condition!!!! Hugs and all the best on Friday!! Please let us know how it goes Bomachel!! May this provide her with a PF life!!!
  6. Excellent short video Tony!!!! I identified with it directly too. I love that it is short and therefore more people will actually watch it!!
  7. All the best Onglamesh!! Sounds like your life is moving in a great direction for you now. It is wonderful that you checked in to let us know how you are getting along. Success is always AWESOME!! ATB!!!
  8. spiny

    Soooo Done!!!!

    Hhh, I know, we know, that you are not a wimp. This beast is straight from hell and deserves to be sent back!! I am delighted that you have people who know your tell and mention it to you! They are good friends to have around. The change in time might be from moving off of Daylight Savings perhaps. Everything seems off by an hour. It used to throw me for a loop. The bulb finally lit up and I realized that 8pm last week is 7pm this week. Are your D3 levels at say 85 or above? You need to be at that level to reap the benefit of the regimen. You can PM XXX for information on the c
  9. Actor, not a real sufferer? That was funny FunTimes. Jon is correct on the trigeminal nerve. It serves that whole side of your face, head, etc. Some have more pain on the upper teeth and some with the bottom. I think that many of us massage or rub our necks with a hit. Either before or after for me. If my neck begins to hurt, likely I am going to get hit. I really hope that you can get O2 set up at home for your hits. It is amazing at killing a hit. Push for it!! ATB
  10. spiny

    Soooo Done!!!!

    I'm nocturnal, so I don't notice that, But the first one of the evening will begin about 8pm. My 'tell' is I begin rubbing my forehead above the brow on my CH side. Or I will be rubbing my neck, as that is a 'tell' for me too, if it starts to ache. Both indicate a hit is on the way. Knowing your own 'tell' is pretty handy. Have you looked into getting a welding set-up? Not script needed for that O2. If you are interested, we can help you set one up and get you some relief that way. It will cost about 150 to 200.00 to get that going. O2 should be your best friend! Have you had your
  11. It is hard on your body. It might cause bigger issues down the line. Many reasons to limit the drug. Triptans can do really bad things to your heart. So, too many, is too many. There are better ways to treat your head actually. Please type 'D3 ' into the search bar at the top of the page. A really great way to get relief without sacrificing your body. It is just vitamins and very safe. Good for you stuff. Triptans are not good for you. That is why they are limited. Read the 'New Users' Banner at the top of the page for other info. Welcome and we are here to help!! <3 Read,
  12. spiny

    Soooo Done!!!!

    Hhh, Being sick of it attacking you is normal and we all experience it. Are you doing the full D3 Regimen or just D3? It matters. O2 kills one hit. It does not prevent the next hit unfortunately. But, you need to stay on it for 5 or 10 minutes after the pain has gone. Otherwise, you will get hit again right quick. Try that and perhaps you will get an hour or more pain free. And if nocturnal, try sleeping in a recliner. Keep your head above you heart and you will do better. Wake sooner with a hit and perhaps have fewer hits. I truly understand your anger!! Carry on. Use your t
  13. Do not apologize. WE all need to rant on occasion! I cannot take trex in any form. But, you will find a paper on the site that tells you how to split those injections. You can get 2 to 3 doses out of one auto-dose. Most only need 2-3mg, not the full 6mg in the injector. So, that can be a huge help when you do need them. Many 'stockpile theirs when out of cycle to have enough for the next cycle. Building your arsenal is a good thing! You appear to be past the point of needing your O2, but we have a paper and many who will help you to optimize it for best relief. Neuros seem to just
  14. I have known acupuncturist's and chiropractor's who claim they can cure CH. I have not experienced success with either. Most CHer's would agree that they were not 'cured' by either if they tried it. So that would be no, it did not work. The same as having teeth removed did not, nor did having my sinuses reamed. Empty promises for me. This site is where I found relief. What meds is your doctor prescribing for you? Do you have O2? Have you spoken to your Neuro about how you are feeling currently? I don't like the feeling that you are hanging in the wind with no support.
  15. Hi Mashburn and welcome. Sorry that you are suffering PTSD. Well, that is what it sounds like and we get it for obvious reasons. I hope that it becomes much less over time! You have been diagnosed, right? What are you taking for your head? Any O2 for your hits?????? Have you had a MRI with your diagnosis? I always feel that two weeks PF means it is over. I might still get a random hit due to weather, but the cycle has ended. After two weeks with no hits, I will sometimes try a beer - big trigger - and if that goes down with no CH, I call the cycle over. If I feel nervous regard
  16. if you dig deep enough, you will find that the recommended dose of 400UI/day should be 4,000UI/day. They messed up and moved a decimal point in the way back and have yet to correct it. Say they are fixing it, but no change so far. That is rather crazy that they toss the doctors who are right!!! Have they factored in the use of sunscreen that blocks what light you do get? Australia did not and they have many young women who suffer from Osteoporosis now. That really sucks!!!
  17. My doctor does them as she knows that I supplement and why I do it. So, no extra, just part of annual blood work. They can be ordered privately too, but I am not sure of the expense. It varies by area it seems. It stinks that you are penalized for supplementing when your head clearly benefits from it. Another reason to be happy that Batch is succeeding in getting a trial going. Too bad it will take time to implement across the globe!! ATB!!!!
  18. How are you feeling now? It has been several days since your last bust now and if all is sill quiet, I might feel it was over. You should not get slapbacks after every bust. That part gets easier the more you bust. You can call to get your blood work results if you want the D levels. Get a number from them, not 'Oh, it's fine!' That can mean it is 30 and that is BAD low. but, within the current guidelines. Get the number. You want to be above 80.
  19. Tony, I have no idea. I just wanted to say Hi and wish that you were doing better. Gut issues are awful and I feel for you!! Healing vib's friend.
  20. Pred usually does buy you that pain free time. Until you taper it down! It would be a great time to start the D3 Regimen. It takes a week or three to work, but is very worth it! Adding the Benadryl is very helpful thing for many taking it too.
  21. I use very strong cold brewed coffee kept in the fridge for mine. I can't take any of the Energy Drinks but V8. The D3 Regimen can be a life saver. As I explained to someone once, 'Would you swallow five sips of water for pain relief?' We tend to buck up over taking a fistful of vitamins as some describe them. But for many CHers', the regimen has stopped their cycles completely! I highly recommend that you check into it and do it! All good for you , unlike scripts!! ATB!
  22. Hi Windman and welcome! I have not heard of this, but I am delighted that you are finding great relief with it. It is surprising that you did not get O2 for your cycle though. I thank you for posting this.
  23. Batch, have you put this out on the FB page that so many belong to?
  24. It is very difficult for the CHer and the spouse/partner to grasp what we go through. Do not expect it! And actually be grateful they don't have this mess. My spouse wanted to be there to know about everyone that I had and try to 'help'. It about caused a parting of ways. For me, there is NOTHING he can do to help, just leave me alone till it is over please. That was the hardest part for him. 'How about I talk to you and you just listen?' Listening jacks up my pain. He was devastated to find out that the best thing he could do was leave me alone. And I finally got my tanks moved to anoth
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