Jump to content


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by spiny

  1. I am, by nature, a very 'supportive' individual. In this instance, I support someone that I have known for over 10 years, lives in S.A., and went to this man for treatment. She could not use her lower jaw for about 6 months after and ate everything through a straw. So, that is not a good promotion for his work or work ethics. With her experience added to yours we have a success rate of 50%. In addition, you still get them on one side, just not both. With that rate of success, I would not let anyone near me apply his method to my head! Please point me to the proper source for the statement above. I had no idea the 'cause' had been found!
  2. Can you get her user name? I think that 'most' things that help should be applied here perhaps. I had a mysterious 10 year full remission two decades ago too, but those suckers happen on their own from what I can gather. I was chronic and they just stopped one night. But, I was not cured and when they returned they were all nocturnal and that was a first. So, yes, remission is possible, but don't count on a cure. You and Dr. Shevel have the same hairline, jawline and smile! Remarkable....... I am delighted for you being pain free currently! Enjoy it and may you never experience another cluster! And I definitely share your delight with your results. The word 'cure' is hard to swallow here and for good reason. ATB
  3. I'm in NC and it was covered last year. Lincare is the provider here and several offices knew of it when I called just to see how far the 'word' had traveled last year.
  4. I find that I am best off if I don't go down this mountain during the months that I normally have a cycle. I get hit on the return to thinner air - going home. Ig I have to go down, I hit the McDonald's for a large coffee and do fine most of the time. Denny, my area is ~ 3000-3500 above sea level.
  5. That is pretty positive! Has your break continued today too? You certainly need it!
  6. It helps me too xBoss. The refresh rate on my laptop is no longer an issue, due to an upgrade, but dark mode rocks!
  7. Thanks Bosco. I too got it downloaded. Batch, thanks for the update!
  8. Mizagorn, it would. Ball valves are super simple and easy to use. The first one that FunTimes linked is a great solution too and very cheap. I would check on the delivery time for it first though. Just from my experience with some companies. Number 2 is fine as long as you don't lubricate them at all. the barbs should come in clean of any oils or grease. Tape is only used on threads too. For any of these, you want to be careful and easy with them and not let them stress your tubing. Support them is what I would suggest. The tubing is very stout and strong, but don't leave the connection hanging with no support as over time, the set-up will degrade.
  9. Hi Mondo. No, I have never known of a CHer who benefited from taking it either. It is a vasodilator and generally, we don't want to open our blood vessels as it can put pressure on the Trigeminal Nerve that is involved in Clusters. On occasion, we may sit in a super hot shallow bath to open the blood vessels in our lower body to alleviate some of the pressure in our head. But that is very different from all over dilation.
  10. You might try electrical tape. Wrap it around the tubing snug a few times, then add your clamp. Also, is the clamp one with the slots along the length of the clamp? Has a screw on the side to tighten? It seems like tape would work. I have used this method, with that type of clamp on other stuff to my advantage. Not sure about soft tubing though. Good luck and let us know how it goes!
  11. Look at the shoes! I wonder what they were doing. Are you there Denny?
  12. Mit, in my experience, shadows and hits post surgery are due to the Epinephrine in the anesthesia. I have had a major issue with that twice in the last 20 years. Both times, it lengthened my cycle and once I woke from surgery with a massive hit. You always insist on No Epi! They can use other anesthesia that does not contain any. They don't really like it, but I have found that all of my doctors will comply with that request. I always talk to the anesthesiologist if he is doing the anesthesia too! Your doctor can forget to tell them. So, when it is an outpatient surgery or worse, I have to tell them what I need post op if I have a hit: a Bottle of O2 with a Non re-breather mask at 15LPM. The two hospitals that I have done this with were both very helpful and compliant. When I woke with a hit, my nurse handed me the mask and did not try to make me lie down. It was perfect. You might need to do a 'dose' for it now to prevent the cycle that is threatening you.
  13. That is a great solution to conserve O2. As you have seen, we all have our own but similar methods. Go with what works for you and for that hit.
  14. I was going to mention an IEP for these kids. If they present the school with a note from the doctor describing their specific needs, the school is obligated to supply them. I do know from personal experience, they will ignore the IEPś that are a pain for them. My youngest was gifted in reading and read at a 5th grade level in kindergarten. In first grade, they were to send her to her easel in the back of the room to work on her art skills. Nope. Teacher claimed it was disruptive. So, she was sent to read and TEACH the 5th graders how to read! That started her school career off very badly. Her classmates did not understand and treated her badly over it for the rest of grade school. My son was gifted verbally and suffered in math. They followed his IEP to the letter because he could charm you just by talking about something he was interested in for ten minutes, In addition, the schools gave him all the ´best' teachers, so she was not allowed to have them as teachers! She got whoever was further down on the capability list. Bottom line is that I agree with the purpose of the statement, but I don't have a lot of hope for it. I too would push for the adoption of this idea. I wonder if offering a kind ear to those parents and telling them to get a note and force the school to do an IEP for the child would produce better results? I think that it might. But getting the word out first could smooth that part along for many.
  15. It is so nice to see her confident enough now to go into the water! I know that it makes your heart happy to see her progress Bocso.
  16. The above answers and suggestions are wonderful! My only 'ad' is to hit the caffeine on your way to the O2. I keep strong coffee in the fridge for this or V8 Energy. I sit and rock when on O2. I start my breathing on my way to the tank. You can really help yourself conserve O2 this way: Exhale with force to ditch all the CO2 in your lungs and then do a deep inhale. Hold for 2-3 seconds and exhale with force, ending in a crunch. Likely you will get in 2 to 3 of these before you grab your mask. Continue with the deep inhale and forceful exhale for a bit. Then find the rhythm that works for 'that hit'. I find them to have their own variations that require different breathing techniques. The rocking rhythm will change too. I try NOT to worry that I am doing it differently than I did for the last hit! Just pay attention to which rhythm or speed is working for that hit. It may be different from the last 5 hits you had and that is fine. After the pain is gone, you really must do your 'post hit' breathing time. I have tried to eliminate that part and wind up doing a bat turn right back to the tank within 20 feet or less! Post matters. Do about 5-10 minutes with the regulator set for normal breathing. I count them to be sure that I do enough and don't have to 'clock watch'. I can set my regulator at 2-4 lpm for that part, so it is not burning a lot of O2 up on me. ATB!
  17. Congratulations Bosco!! A year P.F. is grounds for a party! I have issues with Insulin and everything else the pancreas does for us. Mine is due to a medico ignoring the gall bladder in a scan where it was stated to be full of stones and sludge. I had no idea. Anyway, it took ten years to get my mess fixed: Gall bladder removed and I was still having major issues. I did some nasty tests that were sort of ignored by the gastro. My PCP was out for maternity leave and the retired Doc was awesome. She looked at the puter and poked me a good bit and called for a full body CT with contrast. How often do doctors actually poke you now? Hardly ever it seems! It showed that my pancreas had calcium deposits in it from the neglected gall bladder removal that on occasion blocked the bile ducts, along with a bleeding ulcer that had dye spurting out from it. Gastro argued that I did not have Chronic Pancreatitis, but an ulcer. I quote "If you had Pancreatitis, you would be in the hospital!' The ulcer, she treated with pantopraezole, not the standard two antibiotics and a tummy pill!! Our follow-up call did not go well either. She finally admitted that I did have chronic pancreatitis, but had no suggestions for my pain or need to stay home till after 12 everyday due to the inability to digest any foods. My PCP gave me Creon samples. I was able to eat and finally not on the starvation diet from all food being rejected since it did not digest. I gained 20 lbs for which I am most grateful. Being a 'new' drug I presume, Abbvie pays for the medication. I suppose that I may be a guinea pig, but who cares? I can eat without killer pain within two bites and actually have some energy now! Creon replaces the missing digestive juices the pancreas can only manage sometimes. Bottom line is the Creon has not stopped my CH and it supplies insulin for me. May your pain free status last for MANY YEARS!! They just need to quit this mess for some of us! LOL
  18. Yes, Pred is Prednisone or Prednisolone. There are many ways that physicians 'prescribe' a taper. There is a Pred Taper Pack, that you take for a week. This is standard treatment for many issues that need Pred to overcome inflammation. Your doctor might give you a two week taper or a month. But it is a drug that you want to use with caution and only when needed. It will buy you pain free time to regroup if needed at times. Just be judicious with the use of it. Thanks for the very kind words.
  19. Denny, this is great news!! You may come to call P.T. physical torture in the future. But, it is all worth getting it done now, while you are still a youngster. Tell your bride that I said 'Hi!' and 'Thanks'!! She takes great care of you dude. Have a safe and speedy recovery! May all the faeries help you on your way to perfect health. Sending lots of good juju to you!
  20. Bomba Shack!! Ask Jeebs. We all need to move to The Bomba Shack. Mushies for cocktails!!
  21. Hey Jimmy! I am nocturnal too. My verap worked best if I took one at noon, then bedtime (9-10pm), and the last one in the, middle of the night when I woke up. I have NO idea why your doctor said it is for daytime attacks only! If you are nocturnal, you will get most of not all of your hits at night. That does not preclude using Verap at all. Since you are to take them three times a day, you are already on the Short Acting Verap that is best for us. So, no need to change your script. Verap, at the 240 you are taking, worked for me. It killed the first cycle I was having when I started it with a Pred Taper added at the beginning of my treatment. It prevented the next cycle, Then my dentist told me to stop taking it due to a gum issue caused by the medication. I did and a cycle started that fall that was not stopped, even when I went back on the Verap. Due to low blood pressure, I could not take a higher dose, so I just stopped taking it altogether. Now that you have your O2, do you have a good mask? Non-rebreather? That is the one you need and no concentrator either! When you head to the O2, are you hitting some caffeine? Any kind will help a lot! Iced coffee, Red Bull, Energy Shot, V8 Energy. Most of us are not kept up sucking it down at 2am either. I would not down a full Red Bull personally, but some do. The idea is to down the caffeine quickly and huff your oxygen till the hit has passed. Then stay on the O2 at a lower, comfortable flow for another 5 minutes or more so the hit does not come right back. And as a nocturnal, I slept in a recliner to get any sleep at all. Just laid it back partway, kept my head above my heart and piled pillows around for support. It made sure that I woke early in the hit and the treatment worked faster and better. Hope this helps.
  22. Thanks for the update Debbie! I am very happy that you are getting great relief from the shot!! Having past history with a doctor that earned your trust long ago is pretty darned awesome!
  23. Devonrex, Yes, I hear it there. In the beginning. Time is bad for that frequency. The guitar hits it a lot! Vibrates in my head in a bad way!
  24. I agree! I would not try that either!
  • Create New...