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1 Last Song

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1 Last Song last won the day on November 14 2016

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  1. 3 weeks in is still way too early to tell if you have clusters or not. Most are not diagnosed for years. With that being said, I'm sorry you've been suffering in pain and I hope someone can figure out how to get you some relief. Good luck and pain free wishes !! 1LS
  2. I haven;t checked out this app yet. I'm usually not one for trying brand new apps until the bugs are worked out. I Just wanted to add that with some of the other apps that I've seen regarding headaches ... I always wished there was an option to "ADD A BUTTON" of my own choosing, so I can add that I'm taking this med or that med also .. .etc. I hope your app works good and I hope it has the ability to personalize it somewhat with the ability to be able to have a place to add notes on any given day for any given attack. Finally, it has to have a way to be able to save and print out the results to share, compare, and for other specialist to compile all the data. Goodluck and I'll be watching this.
  3. After reading the others' comments, I tend to believe them and believe that the odds would be stacked against a person with so many people that are just plain anti-drug, even when they don't know the science and the facts. I don't ever want to draw any unwanted bad attention towards us clusterheads, towards the alternatives, or towards this site or others that support us. I would NEVER do that. I'd rather plead the 5th and take the punishment than to cause any negative effects towards anyone here, there, etc... I don't think I'm on anyone's radar and I've always been 'low-key'. This is the ONLY place I discuss these matters. I only have a couple of family members that know what I'm doing and they are all 100% for me doing anything that I have to do to help stop and/or prevent my cluster attacks. They see what an attack does to me and they support me doing anything I can do to stop these even if the law doesn't want me to do it. They know I'm not doing this for recreation or for money or for any other reason. It's come down to what Dan said in his documentary : It's suicide or psychedelics. (I think that's the exact quote). For the record, I DO NOT want to commit suicide. I am NOT suicidal. I DO NOT want to die yet. I want to live as 'normal' as I can. I want to be there for my family and friends. And maybe someday, after I get my own clusters under control, I can "Pay it forward" and give back to this community that is helping me so much. Just sitting here and doing nothing about my clusters and suffering multiple attack everyday is NOT an option for me. I would not make it that way. So, for now, I hope that NOBODY get's into any troubles regarding this and if anyone does, I hope they do not mention this place or anyone here. The time's just not right yet. Maybe some day (Hopefully someday soon) .. the time will come when we can push harder for more studies and legalization for medical purposes. If someone gets into troubles and this place and everyone here agreed to fight with them, I'd be willing to travel wherever I'm needed for my testimony or possibly pitch in for legal defense .. but I would ONLY do it as a part of a whole group. Peace and pain free wishes to you all ! 1LS :-)
  4. I wouldn't get any form of treatment in a jail cell ... and that would suck even worse !! I'll pass on that for now. Getting slammed as it is.
  5. I've asked family members about others that could have had this and nobody seems to know of anyone ... except they did say my uncle complained of headaches often. He said it came from the work he did painting / refurbishing great big water towers way up in the air. He always blamed his headaches on chemicals and he didn't want any other family members doing the kind of job he did. He died before I could ask him about his headaches. Other than that, I have 2 nephews that complain of migraines, not clusters. No one else seems to be bothered by headaches at all....thank goodness. I Pray that my son won't have to deal with these things too. He's 23 now and so far, no headaches.
  6. IMO, YES, alcohol can not only trigger attacks, but can make attacks more severe, more frequent, and cause cycles to be extended. Is it worth it ??
  7. That sounds brutal. Did it stop and prevent your attacks ?? I don't mean to sound like I'm downing your doctor, but it seems like after a few rounds of those tapers, the doctor should've had a meeting with you to tell you the dangerous side effects you WILL face if you kept going at that rate on Prednisone (Or other steroids). The doctor should've also been trying other meds / treatments for you so that you wouldn't need to do that many tapers. Writing a script for a taper seems like the easiest way out for him/her without really finding something less damaging to help you. Even if it were to send you to other 'specialist' for possible new ideas. Again, I don't think steroids have ever caused my clusters to get worse. The beast does what he wants, when she wants, almost regardless of what I do. Other meds have made me worse for sure, but not a steroid medication ... except for maybe a steroid block that I had called SPGB. <- That made me much worse quick! Also, I didn't answer one of your questions from above: Yes, I have had multiple MRI's, CT scans, X-rays, on my bones due to chronic steroid use and permanent damage that it has caused. I wouldn't rely on a 'Bone Density Scan' as I had one and it came back 'Normal', then I was diagnosed with AVN (Bone Death) just about 2 months later. Good luck and I hope you find some relief soon.
  8. Thanks for all of your comments. I agree with you all too. No unnecessary attention involving a legal fight would help the cause or further the studies ... but I wanted to ask what you all thought. Pain free wishes everyone. 1LS
  9. Has the CH community ever thought about a pre-planned legal fight to defend someone that had been charged with possession of any of these MEDICATIONS ?? I was just wondering if the CH community and/or organizations have ever stepped in to help someone that took or had in their possession MM (Or another alternative med)? I read in a thread somewhere that a man was arrested, charged, and eventually plead guilty to a lesser felony charge which left him on probation for years and ended up costing him alot of money. He posted that he wished he would've fought it against it tooth and nail because it was a MEDICATION that helps him. I personally know of some doctors, neurologist, and other 'headache specialist' that 'Unofficially' support the use of these MEDICATIONS for the treatment of cluster headaches. Some of these doctors are very well known and highly respected individuals. Are there any lawyers that believe in this and would be willing to step in to help that person PROVE that they had this for MEDICAL PURPOSES ?? I think a legal fight WITH THE HELP AND SUPPORT of fellow clusterheads, lawyers, and doctors might be a way to gain big time attention and awareness to cluster headaches and the treatment, or lack there of. It may even open the door for further studies into this as a real and LEGAL way to treat clusterheads. Opinions ?? And BTW, NO, I'm NOT in any legal troubles nor do I intend to be to unless I a had a bandwagon of support up front. If I had that kind of support, I'd risk it to raise awareness, to possibly help others, and to possibly change the law about using this as a MEDICATION.
  10. I was just wondering how this is going ?? Has anyone installed and used this APP yet ?? Bugs, glitches ?? How much access of your personal info does it require ??
  11. Sleep and clusters don't mix well since REM phase sleep is a trigger. You cannot 'Skip" REM phase sleep neither. For some reason, the brain absolutely requires some REM sleep. Without any REM phase sleep, you will die within weeks or perhaps a few months .. but again, the body and brain NEEDS REM phase sleep.. Sleeping aids will not allow you to skip REM phase sleep. Sleeping with a CPAP machine or low flow oxygen on may help increase your O2 levels while sleeping thus preventing some nighttime attacks.
  12. Sorry to hear that FIreface. Steroids did severe damage to my hips (And much more). Don't rely on bone density scans to check your hips. It's not good enough. You need x-rays and tell them upfront to look for AVN (A Vascular Necrosis). Good luck !
  13. 80mg doses of Prednisone is a fairly hefty dose. Yes, some do 100mg and then taper, but 80mg should do the trick. I would bet that if 80mg didn't stop the attacks then 100mg isn't going to neither. Also, I hope that I misunderstood, but it looked like someone said you had taken 60mg of Prednisone a day for years ?? OMGosh! That would be deadly and side effects would happen fairly quickly. Like the others did say, Prednisone should be used sparingly for short terms and must be tapered correctly. To answer your question: I've done a TON of steroids, too many in fact. I know first had their benefits and their nasty side effects. Thru all my years of using it, I don't feel like it's ever made my CH worse. My advise is to use it as a lifeline only. Try to get back to something else that's worked before (MM ??).... and maybe seek another doctor that's willing to do more than write a script for Prednisone. Good luck !
  14. I've never heard of it called "Sluder's syndrome". I despise the term "headache" associated with clusters because this term is so misleading. I looked up Sluder's syndrome and found an interesting article (For 2 reasons). I've had 2 SPGNB's before and this was apparently done the first time in the late 1800's by Dr. Greenfield Sluder. (Article written by Dr. Steven D Waldman. MD) http://journals.lww.com/rapm/Citation/1993/18050/Sphenopalatine_Ganglion_Block_80_Years_Later_.2.aspx 1LS PS. These 2 SPGNB's that I had done by a pain management doctor did NOT help me and in fact, made me worse !!
  15. The nasal sprays were never effective for me. I relied on Imitrex injections for many years. I still won't leave my house without an injection on me, although I rarely use it anymore. (I use daily DHE-45 injections to try to prevent an attack in the first place). I think many people (Doctors included) agree that Triptan medications can cause 'rebounds'. As far as feeling exhausted, I seem to get that with many attacks, regardless of what I use. The longer it takes me to abort an attack, the more exhausted I feel from it. If the exhaustion is a real problem for you, keep in mind that Zomig is a Triptan medication and that there are at least 7 different Triptan medications. You may want to ask your doctor about another, but never mix Triptans. Good luck ! 1LS
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