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Everything posted by spiny

  1. Also possible CHF. And can be checked with a trial run of Indomethacin rather quickly!
  2. Ilya the vitamins will be a big help. As you know, your D is in the trash and really needs to come up! And I share the Equinox date with you! Many start a cycle at that time of year. Sucks, but at least you have an idea of when it is coming and can prepare to battle if needed! Let us know how breaking them up worked for you! Oh, are you using 'burpless' fish oil? I could not stand the other one. Going 'burpless' helped me a lot. I'll see if I can reach Batch too.
  3. Hi Dlions and welcome. Just tiny bit to add. Often we have what we call 'shadows'. They can last all day. A low grade head pain compared to a real hit. I think this may be what you are describing. It makes your head sore and ache too. Things like bending over to pick something up tends to make them worse for me. They are quite common. So, if you look at it that way, you are getting hit 2-3 times per day. That would be very consistent with CH. The rest of the time you are suffering shadows - which hurt. A lot of us take some caffeine for that part as well as a true hit. You can do
  4. Glad to hear that. If you up your dose, do re-checks, okay? Unfortunately fatigue can get you with CH. It just wears you out! Like being in battle with your head for hours a day!!! Exhausting after a while.
  5. Yes. Information is power over the beast we live with.
  6. It lowers your blood pressure. That can be too much. What is your BP currently? 240 per day lowered mine to 80/60 at times. Needless to say, I quit taking it. I could not take enough to help. When it gets too low, I get very fatigued. A cycle will make you tired as it moves along. Especially if you get nocturnal hits. They keep you up at night and then you can become prone to getting a hit if you try to nap. The D3 Regimen is awesome! It helps many patients on this board. Some go pain free and others get lower intensity hits and slower ramp up times. Both are a huge help in controll
  7. It is hard on your guts. Many take a something for that. The symptoms you are experiencing are rather common. If it is giving you a headache, why take it at all? It is used for Hemacrania's, not clusters. Sometimes they give it to rule out hemicrania. Since you are having such a rough go of it and do not feel that it is helping, you might stop taking it and wait till you see the Neuro. Tell him about your experience! It is a very powerful NSAID and not to be used lightly. Especially if you will not benefit from it. And Pebbles is correct about it not helping Clusters - at all.
  8. I am an Equinox person. Fall one in September - the 22nd or so. Never changed sides. At first they lasted a month or six weeks. Then it got to where they lasted till the Spring Equinox. And there was one year where I had surgery and the doctor was not at all helpful with the storm he stirred up in March. Not a Neuro and did not care. That one lasted eight months, not the normal six. Just keep in mind that they morph over time, They can change for the better or they can change for the worse. If you meant that they began in September rather than November, that fits a common profile. The Eq
  9. CHF has all the great links for anyone here. He is great at providing that input to our members. The D3 can begin to work quickly for some. Like seeing results in the first week. Others can expect to have a reduction in about two weeks from what I have read here. The loading really gets your D up quick and that is what many need. It is known for stopping Ch for some and reducing the max pain level and slowing the ramp up for others. Most will take either with a big smile. Pain Free is the best of course. Take all your papers and push for your O2 even if you feel better now. Then y
  10. Well, if it is not safe, a lot of us are in trouble! Not covered by Medicare and often not Medicaid either. Other companies will attempt to deny it on occasion too. It is the expense. I believe that O2 toxicity was observed in ICU patients who were on O2 24/7. Big difference. So, you are not using it 24/7 and you do not have COPD that limits you. Let them know that primarily it is an issue of expense so far as insurance is concerned. The doctor will tell you it is safe, just hard to get approved! If it weren't safe, why would it be the primary abortive we use? Which is approved by regu
  11. spiny

    Thank you

    That is the 64K question. We are the same, but different too. For me, I wake up one morning and realize I had only three hits during the night, not the standard four. Then, one morning, I wake and realize I did not get hit at all. I do have some issues with continuing to wake at my standard 'hit' times for a week or more. But, they are painless awakenings. What dose of Verap are you taking now? Two or three times a day? Chers can go pretty high on that stuff. Your BP may be a limiting factor. Yes, that last day or two of Pred often finds the beast rising again. It sucks! Hopefully y
  12. spiny

    60 minutes

    Research is destroying the 'No medical benefit' thankfully. The same as it has done for MJ. AARP came out with an issue covering the many retired people who use it for pain relief so they can work at home or on a paying job. It is amazing to me to see this finally come full circle! Just keep politics out of it!
  13. spiny

    Thank you

    While sorry that you have CH, we are very glad that you found us. Read and ask as many questions as you can or care to. By reading the Forum, I think you have some good background info for your Neuro visit. Like Verap is the most often given daily med for CH. It lowers blood pressure. And you want the short acting, NOT extended release formula. It just works better. And you will want to keep an eye on your BP if you increase the dose. EKG's are often done with an increase in dose. Need to keep an eye on cardiac function. Often you will be given a Prednisone Taper Pack to bring
  14. Numerous CHers have had teeth pulled due to pain they thought was coming from a tooth. Unfortunately, having the tooth pulled did not cure their CH. Can't cure it. I would advise having a check with your dentist regarding the wisdom tooth. It can cause decay in your 12 year molar and you don't want to lose that!
  15. Thanks Pebbles. Yes, the more these medications are shown to work on other stuff, the better for us as a group!
  16. Hey Elrik! Yes, they can last. Unfortunate but true. On the other hand, I had a ten year remission once, so don't despair! Others have experienced the same. Some have experienced them since childhood. Which is horrible! You never actually know. But, they can be managed to a great degree. Please read and ask questions. Hopefully we can help. If nothing else, we do understand what you are going through. And this board has many years of experienced Cluster Heads to talk to and get info from to fight the beast. ATB
  17. I think that if you put 'Boost oxygen' in the search bar, you will find some info from a year or two ago. I had planned to buy some just to see if it would help, but didn't get over to Boone to get them. They might be worth having for a road trip as insurance. But, see if you can find more info in the old threads.
  18. spiny


    There have been suggestions through the years that hormones get involved. And some women are Pain free throughout the pregnancy if they get pregnant. Some guys have found that low T is contributor. Have you looked into the D3 Regimen? Safe and effective for reducing pain of a cycle. Also many have gotten pain free on that alone.
  19. We need a Happy Dance meme here! Great news there!
  20. Siegfried, you do what you have to do. If you can't take Verap, then you can't. I would definitely work on the D3 aspect before I took any Lithium. It is safe and Lithium is a mess in the making for many. I turned it down flat when it was suggested years ago.
  21. Way to go Kat!!! Now, read up on how to use it for your head. It is work, but well worth it!
  22. Welcome GodsBlessedGirl! Sorry that you need to be here, but very glad that you found us. Take a moment to read the banner above For New Members if can. It provides a lot of info. ATB
  23. It would be a good idea to start your own thread Art'. In the interim, I wonder why you have not begun the D3 Regimen? It sounds like a good idea to get that building up in your system. And that is a lot of Pred over 8 weeks. It is most often used to provide relief while the Verap kicks in, not as a stand alone med. You don't say, but what form of triptans did you take? Spray, pills, or shots?
  24. It is usually best not to tell a welding supplier that you are going to breathe it. Many say it is for a cutting torch. Or that a relative needs it for welding. Just about anything will fly as long as you don't say it is for you to breathe.
  25. That is great Willy! Success is awesome when kicking CH to the curb. Nothing like getting your life back.
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