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ClusterBusters

1 Last Song

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Everything posted by 1 Last Song

  1. 1 Last Song

    First cluster headache at age 50

    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. 1 Last Song

    Registrate your pain

    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. 1 Last Song

    Pre-planned Legal fight ?

    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.
  4. 1 Last Song

    Pre-planned Legal fight ?

    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 :-)
  5. 1 Last Song

    Pre-planned Legal fight ?

    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.
  6. 1 Last Song

    FAMILY TRAITS

    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.
  7. 1 Last Song

    Can alcohol prolong a cycle?

    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 ??
  8. 1 Last Song

    Is Prednisone making it worse? Please help :(

    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.
  9. 1 Last Song

    Pre-planned Legal fight ?

    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
  10. 1 Last Song

    Looking for testers

    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. 1 Last Song

    Why do CH appear after falling asleep ?

    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. 1 Last Song

    Is Prednisone making it worse? Please help :(

    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. 1 Last Song

    Is Prednisone making it worse? Please help :(

    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. 1 Last Song

    Recommendations for CH literature/research papers?

    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. 1 Last Song

    CB Theme Song ?

    I just had another 'screamer' and I'm trying to 'let it go' right now. :-\ So, on a lighter note and just for fun: If Cluster Busters had a theme song, what would that song be ?? Hope you all are having a better day than I am. PEACE 1LS
  16. 1 Last Song

    Any results with Zomig nasal spray

    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
  17. 1 Last Song

    HIGH price of oxygen !

    Thanks for the info :-) I will call my doctor again on Monday. They did write an Rx for me to get what I have now. Plus, I do have a serious breathing problem (advanced COPD and 'Smokers Lung"). I know my arterial blood gas level dropped VERY low last February when I also got pneumonia and it landed me in ICU for 11 days. I've never been so sick. I should have oxygen and it should get paid for too, IMO. I'll let you all know if I have any luck getting Medicare to pay for it. 1LS
  18. 1 Last Song

    HIGH price of oxygen !

    I just recently got my new oxygen set up. I have 2 "M" tanks (Which cost me $50 each to get), a 'Clustermask", and a high flow regulator. The entire set-up cost just under $180. I thought, not too bad. But then ... I had several cluster attacks in 1 night, using an entire M tank and part of the second tank in just 1 night. When I called to ask about stopping by to get it refilled or exchanging for 2 full tanks, I was surprised to learn that it also cost $50 per a tank to refill them (Or exchange them, it doesn't matter). If I can use up $50 a night in OXYGEN, how much is this going to cost me PER MONTH ?? THAT IS CRAZY !! The sales people said that "Someone else with clusters" gets oxygen from them too and that their insurance pays for it ?? Mine doesn't (Medicare) ?? WTH ?? "I can't afford oxygen" ... is just plain crazy !! < RANT OVER > Suggestions ?? 1LS
  19. 1 Last Song

    CB Theme Song ?

    Not actually a cluster buster theme song, but a cluster ATTACK them song .... I'd have to choose something a little more painful. https://www.youtube.com/embed/AfvVT8Z_P-s
  20. 1 Last Song

    CB Theme Song ?

    Good old song there Tom. One of the first songs I learned to play.
  21. 1 Last Song

    Made a website for how I treated my headaches

    I MUST agree with ClusterHeadSurvivor. That word "Cure" is inaccurate and almost insulting to me ... But It doesn't seem as you're trying to profit from fellow clusterheads and you're giving credit to Batch and others, so making a site to help and/or inform others is a good thing. It also seems to me that a programmer would've made his info a little more private .... ie. full name, address, phone, etc ... <?> Just my opinion though. BTW, I too know some Java, VB 6.0, C++, and more. I do wish I knew Python and Pearl. :-\ 1LS PS. To get your site higher on search results takes $$. Good luck to you Hamzeh
  22. I'm not suprised that it's taken so long to get this drug available for a trial. Dr. Merle Diamond mentioned this drug to me at least 5 years ago. The cost doesn't suprise me neither. It's ridiculous ! @Bob - Migranal (Although it is stated to be a generic form of DHE) has some additives in it that DHE does not, like caffiene for one. DHE (Generic or brand name) IM or IV injections do NOT have these other additives in them. The only point i'm trying to make is, Migranal is VERY similar to DHE, but it is NOT exactly the same thing as the shots, IM or IV. One (1mg) IM injection per a day (30 shots per month) cost my insurance nearly $6,000. (More expensive than GOLD). If I need 2 shots per a day, the price jumps to about $11,500 per month. Seems like every thing that has to do with medicine / treatments are ridiculously expensive !! That's it. Mini-rant over. :-)
  23. 1 Last Song

    My literary contribution

    Wow! Reading that is a real reminder to me that I'm not alone. Sorry you must deal with the same Beast that also loves to torture me. Thanks for sharing !
  24. Strength & Patience 🍄🍄🍄🍄

    1. 1 Last Song

      1 Last Song

      Not sure what all histamine has to do with clusters, they do play a role. Even one of the names suggest it, Histamine Headaches. They use histamine to induce attacks during some trials. I'm going to give the Histamine Desensitization Therapy another try. If this doesn't help, then on to plan B! Here it goes ...

  25. 1 Last Song

    What have you tried?

    This is a partial list of the medications I have taken (since there is no way to remember them all) and the results *Imitrex injections – Very effective at 4mg ( 6mg is too much ) I use an average of 3-8 injections per day Imitrex pills – Not effective Imitrex NS – Not effective Frova – Not effective Maxalt – Not effective High-flow O2 – Never did work before until recently. May stop some attacks if applied quickly at 10-15 lpm or higher. Will not help for those attacks which wake me from sleep. Only worked approx twice out of dozen tries. *DHE injections – Very effective ( temporarily; 24 hrs +/- ) *Solu Medrol 125mg +/ – Very effective ( temporarily; 24 – 48 hours ) Prednisone – Very effective at large doses ( 60, 80, 100 mg per day to start ) but with hefty side effects Medrol Dose Pak – Very effective but also with hefty side effects *Histamine infusions – Was very effective and still is the best thing I’ve tried to stop and prevent attacks. Rarely fails and most of the time it prevents attacks or keeps them manageable ( 1 attack per day and less intense attacks) for 3 weeks to 10 weeks. Helped for almost a year July 2009- July 2010 had very manageable attacks and was able to stay out of the hospitals for the most part. It was the best I have done in over a decade. Lithium – Not effective ( I tried this several times, for an extended period of time, at doses up to 1050mg a day .. not sure why I say that dose cause I have 1200 mg in y head now) ) Verapamil – Not effective ( I could not tolerate large doses. 400mg a day proved to be too much causing dangerous decrease in heart rate. Heart rate dropped into the lower 20's ) Keppra – Intolerable side effects included severe nightmares. SPECTACULAR SIDE EFFECT CAUSING REAL PHOTOGRAPHIC MEMORY !! INCREDIBLE ! Wish I could've stayed on it even if it didn't help w/ the clusters !! Topomax – Intolerable side effects included kidney stones twice; the first time requiring surgery. Neurontin – Not effective Lyrica – Not successful. Bad side effects Lamictal – Not effective Clomid – Not effective Cell Cept – Not effective Indomethacin – Not effective Nimotop (BIGGEST PILL I EVER SAW) – Not effective Doxepin – Not effective Thorazine – Not effective; Intolerable side effects w/ large dose – SEVERE reaction; hallucinations, paranoia, psychosis (?) Depakote & Depacon– Not effective ( I tried this for an extended period w/ Topomax. Dosage up to 1750mg a day) Decadron & DexaPacks– Not effective + “ Mushrooms “ – Not effective for long at all. I did not follow thru with the 'protocol' which included a 2nd dose 5 days after the first dose. (No supply) I will be trying another route soon. Occipital blocks (17 bi-lateral blocks) – first block stopped attacks for 17 days, all following blocks failed... Not effective Sphenopaletine block – Not effective, made attacks worse Facet block – Not effective RFG – (Radio Frequency Generator) Not effective; attacks resumed within a couple of hours Bi-lateral Occipital nerve stimulator TRIAL IMPLANT – Not effective; electricity did not ‘penetrate’ the skull and behind the eye. [Dr. Rogers from MHNI]. Dr. Todd Rozen & Dr Joel Saper Sansert – Not effective; I tried this long ago for a couple of months. Won’t try it again because of the Imitrex restrictions while taking this drug. Liquid Cocaine drops – Not effective; tried this at Diamond Headache Clinic one time; intolerable side effects (Lucid Dreaming). (Note: I’m sure that I tried a 4% solution without any success. I just read today that there is a 10% solution. Would this make any difference at stopping or preventing any attacks?). Also tried this more than a year later at home. Received one prescription and it was not successful at helping stop or reduce the cluster attacks. I reported this to Dr. Diamond as unsuccessful and that I did not want anymore. (This many about 70 yrs old swore by it though. He said you must administer it correctly. <?> Lexapro – Not effective Hydrocodone & Oxycodone – Not effective (See below) Methadone – Not effective Actiq – Allergic ( severe itching on face and head at 600mg dose ) Stadol / Nubain (ALERGIC) / Morphine / Buprinex / Dilaudid (ALERGIC) / Demerol IV ( Not effective for full blown cluster attacks. Does help for smaller attacks in combination with meds like DHE or SoluMedrol or for attacks that are pain scale 7 or LESS ) Remeron – Not effective Risperadol – Not effective Melatonin – Not effective; Helped me sleep at first but quit working quickly. Dose up to 12mg at night Diazapam – Not effective; Helped me sleep at first but quit working quickly. Dose up to 10mg at night Baclofen – Not effective Senequon / Doxepin 100mg at bedtime – Not effective Droperidol / Anapseen (sp?) – Not effective; Changes EKG readings (affects T Waves. May cause a cardiac event ?) Lortabs, Vicodin, Norco, Hydrocodone, etc ... Percocet 10/325 mg OXY IR 5mg (Up to 160mg per day along with TWO 100 mcgm Fentanyl patches for broken shoulders) NUBAIN IV - SEVERE LIFE THREATENING REACTION; STOPPED BREATHING AND CLOSED MY THROAT !! DALAUDID IV - SEVERE REACTION CAUSING URINARY RETENTION REQUIRING A CATHETER FOR DAYS, VERY UNCOMFORTABLE!! REPEATED IV DOSES OF PHENEGREN CAUSES TARDIVE DISKENESIA, HAPPENED TWICE, ONCE FOR 2 DAYS AND ONCE FOR NEARLY 2 WEEKS!!! Morphine Sulphate ER 30mg Morphine Sulphate IR 30mg Fentanyl Patches up to 200 mcgms (Have been doing 200 mcgms for over 15 months) ..UPDATE: I WEANED OFF THIS MEDICATION AND WILL NOT TRY IT AGAIN> TOO HARD TO STOP, BODY GETS TOO DEPENDANT ON THIS MED Savella 200mg per day Meperdine (Demerol) Tabs 100mg X 2 per day PRN Cluster attack, RX never refilled ++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ This is what I remember anyways ....
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