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Everything posted by amon10

  1. Absolutely no apologies needed. Thanks for all your hard work keeping things going. With my tech skills I just thought I screwed my device up and it was going to be a while before I fumbled my way back here. lol
  2. As a fellow episodic I wouldn’t put too much into your sleep schedule starting your cycle. I work swing shift all the time and the only thing certain for me is when I’m in cycle 80-90% of my attacks are coming during sleep.
  3. Good advice CHF, the verapamil's effectiveness will be lowered. Sometimes it's a balance you won't lower the D3's effective but I have found when I get my blood levels where they need to be I have relied less on the verapamil.
  4. Episodic and have stayed on the D3 on maintenance dose based off my blood levels. Absolutely convinced it has also helped with my years of joint pain and arthritis. I have been able to reduce my intake of OTC anti inflammatory medication by 80-90%.
  5. Any doctor you can't have a conversation with in my opinion would gone. A doctor that dictates medical treatment without feedback from the patient, does not deserve patients.
  6. Not looking for a share but just heads up, another room should be available. Unfortunately had to cancel yesterday, feeling bummed.
  7. Also there is a good Facebook group that has several people from Wisconsin and also a link for map to fellow suffers. Clusterheadaches is the best group on Facebook some of the other ones are kinda of controlling and limit topics. Let me know if you are on Facebook and want me to send you an invite.
  8. Fellow Wisconsin suffer here. Out of cycle right now, but know what you mean by CH effecting all parts of your life. Also agree with DD about the conference this year. Another member here has been suggesting it to me and my wife for a few years already and after meeting some fellow suffers in person last year we are heading to the conference this year. There is something truly validating about meeting fellow CHers in person, wish I would not have waited 25 years to do it.
  9. I agree with CHF, trying adding the D3. It will make them O2 aborts even more effective.
  10. As far as welding oxygen goes it's pretty straight forward. Purchase your own tank or rent from a welding supply company. The oxygen is produced in the same manner. When you purchase the oxygen you will need a "story", they won't knowingly sell you it for medical reasons. More liability reasons than anything. Tell them a buddy is teaching you welding, or glass blowing. You don't need any other equipment, just extra 02. Buy a regulator online or one at a tool supply store. Need one with a CGA 540 style regulator to fit a welding oxygen tank. Then purchase a non rebreather mask. This is a good one: http://www.clusterheadaches.com/ccp8/ Then check back and someone gave you best practices on how to use it. If your doctor can't give you a valid reason(respiratory conditions) for not using oxygen you should be fine.
  11. Hope you guys can meet up. I waited 25 years before I meet fellow sufferers in person....wish I never waited so long.
  12. Have had dogs and cats most of my life. Dogs have always stayed away until right when attack is over and then come out to comfort, they just seem to know. Just said good bye to my cat a few months ago, I should probably get another. She was a tough cookie, would never run off and stay near, but not too close. She would always seem very composed even when I was hitting my worse. I know you could train dogs for just about anything but for CH I think it would take many years and not sure if it would be a benefit.
  13. I agree with what CHf said, also not everyone has a set pattern to when they get attacks. Mine can change their pattern just by my daily schedule changing. Start logging your attacks, pain level, meds, and possible triggers. If a medicine is not working discuss with doctor and get off it. I spent too much time taking useless meds. Good luck to you.
  14. And we all hope you find some definite answers with pain relief.
  15. GoldEnBars thanks for sharing your story, sorry you share the experiences of many of us. First off on the supplements you didn't say how much you were taking? Look into this: http://www.vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people+ By a member here(Batch) that really knows what he's talking about. I stay on it at lower doses even when not in cycle and has helped with other inflammation issues. I also add turmeric curcumin(500 mg daily) to mine. Get your regular doctor to prescribe high flow oxygen to you why you wait for neurologist appointment. If he says no, ask why? It is safe and effective, so unless you have some type of respiratory condition call b.s. on him and get your own. Yes your neurologist might just try to prescribe more medication to you, but it is still a good idea to see them just to rule out other possible health concerns. You also might luck out and get one that knows what he is talking about and/or is open minded. If you haven't started already, start a log so you have information to share with them and if something is not working for you.
  16. Quelmath please up your game on the oxygen. Try the method CHf mentioned. Do not get hung up on the lpm. I "pussyfooted" around this for a while with marginal results. For me the rapid oxygenation of bloodstream was what helped me to kill attacks(sometimes in 5 minutes) work best and staying on 5 minutes after relief of pain to prolong next attack. Oxygen is the best abortive but it won't stop the cycle, there is plenty of info here on how to do that. PF and good luck to you.
  17. Yes thank you very much for your advocacy! Also anyone else here that went! Don't know you all personally but very thankful to have dedicated folks speaking on our behalf.
  18. Thanks DD....man I could listen to Grand Funk Railroad albums over and over.... trip on it's own.
  19. Hey Kyle try not to get too depressed, not everyone becomes chronic. 25 years I've been episodic and you are also at a great place to learn about different treatment plans. I would recommend trying to get the blood test for the D3, this will give you a better idea what's working. Like Chf has mentioned OXYGEN! I wasted many years not using this highly effective abortive. If your Neuro won't give it without a valid reason, I say he is probably not your best bet. Last start a log, either paper or electronic. This will become invaluable for you going forward.
  20. Welcome Michelle! You story has a lot a similarity to mine. I also agree with you that pain is relative and no has a right to compare to others. The human experience is truly unique. As far the 02 goes hope they got a good set up for you, it took me few tries to get a truly effective one. Sometimes doctors like to start out to low and not the best equipment. Also you should try the D3 regimen. It has been effective for many, even us episodics.
  21. Shared a link above I will let someone else jump in on that. All I know is this has helped me.
  22. One other I would have your pcp do is run a complete blood test to check his vitamin D3 levels. This will save some time while they are working on diagnosis. Many here have had success with this regimen and I stay on it even when not in cycle to help with other inflammation issues. You should be able to find it in files section or search under D3 and Batch. Adding a link: http://www.vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people+
  23. Sorry to hear of your son suffering. It definitely is a different pain to see your children hurting. All though some of his symptoms seem cluster like, they don't last four days. Unless maybe he is going between attacks and shadows. I would definitely start a log right away to give details for the doctor. Yes get in to see a neurologist as soon as possible. Cluster diagnosis comes from them doing test to eliminate other medical conditions. If he becomes diagnosed with cluster headaches their are many well informed people here to help you both on that path. I'm hoping you both find answers.
  24. Well said CHf, as the owner of a "poor man's" demand valve I have argued this with people. You can only breathe in what you can breathe in, right? To me lpm is kind of meaningless unless you don't get enough, anything extra is wasted.
  25. Hi bobvalli As far as melatonin goes, you might be allergic to a certain brand perhaps? I never heard of someone getting hit after it. It also never worked for me personally, just made me more tired after getting up. It does help many though. I would stay away from the opioids, wouldn't do anything for CH and can make things worse. Verapamil usually works best in the non extended release form. I would definitely look into the D3 regimen. My last cycle(also episodic) I was able to abort 90% of my attacks with proper oxygen therapy, which I believe had a lot to do with the D3.
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