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  1. I tried acupuncture for the first time this cycle. After a horrendous 6-month cycle in 2012 I decided I would not take any prescription meds this cycle (other than O2). I went to a well-respected clinic with a father/son practice who are both medical doctors and had been practicing acupuncture for many years. They did not make any promises or claims to cure my CH. After the first treatment I had what felt almost like a migraine or strong shadows that came on around the time I would normally get a CH. I woke up and tried some O2 & coffee but it didn't resolve or turn into a CH. I went back to sleep and had the migraine-like pain for most of the following day. I had only 1 CH at night during that week. I had another acupuncture treatment 1 week later. The second time I didn't get the migraine-like pain. I haven't had a CH since and am hoping I may have ended my cycle. I have now gone 7 days w/o a cluster h/a, but haven't tested with alcohol to see if it's really over. Of course I have no idea whether the acupuncture has anything at all to do with the change in my headache pain or the potential end to my CH cycle. My insurance doesn't cover it so I may have just thrown $250 down the drain. But who knows? And unlike all the prescription drugs I've tried in the past, it didn't cause additional HARM. I'd try it again next cycle.
  2. I started a new cycle July 15, but thankfully this has been one of the easiest cycles of my life. I have now gone 7 days w/o a cluster h/a and am praying that the cycle may have already ended. I have been extremely strict avoiding trigger foods, alcohol & stress this cycle and haven't tested the waters yet so I'm not completely sure it is over. I am scheduled to have shoulder surgery next Thursday and when I mentioned this to a fellow CH sufferer, he suggested that there may be certain medications, particularly related to anesthesia, that I should make sure I avoid during my procedure. Does anyone have a list of these meds or have experience with meds related to surgery triggering a CH attack or cycle? Thanks! Suz
  3. Are there clusterbusters on here from Iowa? If so, please send me a message. Thanks! Suz
  4. CHfather- by "no meds" I actually just meant no prescription meds (no prednisone, verapamil, Depakote, Topamax, etc.) Other than the 2 cycles I experienced during my pregnancy, I don't think I've ever gone w/o a burst and taper with verapamil initially. Sometimes it actually works and it will end the cycle. But I really feel that the prescription meds prolonged my last cycle. Before O2, I relied on Imitrex, but that really increased the number of headaches I would get and those rebound headaches would last for hours without another injection. I learned to stay far away from that stuff. It's all trial and error. What works for one person doesn't always work for another. What works in one cycle, doesn't touch them in another. It's exhausting. I really wanted the seeds to work so I tried so many times last cycle with many adjustments. They just didn't work. Maybe they would work this cycle but I still feel that was an exercise in self torture so I can't bring myself to do it again. I called the one person I know who could potentially locate some M for me and was able to get just a very small amount. I haven't weighed it yet but I'm guessing it will only be enough for 1 attempt. I haven't decided whether or not to try it. My vitamin D levels were ok when tested in January and I was low in Zinc so I have already been consistently taking D, Zinc & Calcium & Magnesium, but have increased the D substantially this week because I don't think it can hurt anything. I think I may actually have some licorice root in my cabinet from the last cycle as well so maybe I'll give that a try again too. I am a little worried about taking anything at this point that could interfere with narcotics because unfortunately I'm scheduled for shoulder surgery on August 14. I was planning to put it off until after this cycle is over, but I had another bad dislocation on Sunday, which led to sleep disturbance and 2 nights of clusters every other hour. I'm damned if I do, damned if I don't. If I attempt a bust I'll update. Just not sure it is a good idea if I don't have enough to really try to knock it out. I remember after a bust attempt last cycle my headaches sort of morphed into some crazy cluster/migraines that didn't respond well to O2 and lasted for a full day. I do not want to go there again. Thanks again! -Susan
  5. Thank-you so much everyone for the information and advice! I am doing much better today. Thankfully getting my O2 was easier than ever and it was already delivered to my house. I didn't even have to argue about the flow levels or mask type this time. They said it was actually a "cluster headache protocol" now. Someone is catching on! That is great news! I've decided to forgo any meds for now and see what happens with just using O2 for management. If I can get some mushys I'll give that another go and hope that trying it earlier in my cycle will be the key. If not, I'll reevaluate after I see what this cycle is going to do. I am happy to say I've backed away from the edge of the cliff. It's still in view but I'm in a better place now. Having the support of others who get it is an amazing and wonderful thing! And having the O2 takes some of the fear away.
  6. The beast is back again. I have fought this battle on and off for 14 years and when the pain hit its highest point tonight I honestly had the thought that IÂ’ve never felt anything this painful in my life. ItÂ’s funny how I forget how truly awful the pain is when IÂ’m out of cycle. This past reprieve was 18 months and I am grateful for the pain free time. But IÂ’m also angry and scared and sad right now. In the past I had dealt with relatively short cycles, but the last one drug on for 6 full months. It was mentally and physically excruciating. I was so traumatized after that cycle ended that I kept my 02 for a full year before I returned the tanks and stopped paying the monthly fee. During that cycle I tried every drug my Neuro could think of, everything that had worked in the past and a dozen other drugs with no relief. I tried mushys and countless doses of seeds, with and without alcohol with various lengths of soaking time. I tried every vitamin regimen I read about on here. Several times I thought it was going away. IÂ’d have several pain free days in a row and then bam, a night of cluster headaches. One after another all night long sucking the life out of me. O2 was my only savior. At least they didnÂ’t last long when I could start the O2 immediately. I am a single mom with a stressful full time job. IÂ’m an attorney and compliance officer for a hospital. Tonight I went to our ED after an hour and a half of agony and asked for O2. I was told that they didnÂ’t have any rooms available and couldnÂ’t even hook me up to O2 in the hallway. I know for a fact that our small city was not experiencing a major crisis tonight so that couldnÂ’t possibly be true. I was told that I was low on the triage list so I would have to just wait it out until a doctor could see me. I didnÂ’t need to see a doctor. I needed 10L high flow O2 with a non-rebreather mask. I turned around and walked out. Eventually the h/a subsided and the anger and frustration set in. That last 6 month cycle nearly killed me. IÂ’m sitting here feeling very sorry for myself right now. I keep thinking I canÂ’t do this again, not like last time. Maybe I need to see a psychologist. Maybe if I didnÂ’t go back to work and just meditated and relaxed for a few weeks the cycle would pass normally. Maybe the internal panic IÂ’m feeling right now is making this worse. Maybe I need to suck it up again like I did last time and just push through and survive. I feel like IÂ’m on the edge of a cliff.Â
  7. I probably should be setting my phone timer. That's a good idea. Hopefully I will have enough sense to remember to do that. This has been going on so long that I think grabbing the O2 happens like clockwork when I'm not even fully awake, especially the 3rd or 4th time a night. davidj, I actually do find that very reassuring. Even though mine have never lasted nearly this long, they have come on at unpredictable times and lasted for various amounts of time. I don't envy your long cycles but at least you can look forward to some pain free time once it's over.
  8. Thanks everyone. I've been off prescription meds again for 3 weeks and I honestly feel so much better. I don't know whether the drugs lengthened this cycle or I just didn't get any of them enough time to actually work. I just hate the side effects so much that if I don't see the benefit pretty quick I can't stand to keep taking them. Maybe I need to try another type of seed? Spiny your post gave me a little more hope. Maybe this is just a crappy long cycle. It's true, the weather has been so up and down this fall. At least my O2 seems to give me some relief, even if it is only temporary. I know what you mean ob1, I've had so many long nights lately. The O2 will kill the h/a but some nights I wake up every hour with another one. One morning I woke up and my tank was empty. I'm pretty sure I fell asleep more than once that night with the O2 on. Take care everyone! -Siouxz
  9. Jeff, I've tried them twice this cycle. I didn't notice a big change in my headaches. I would have tried again but haven't been able to obtain any more since the weather has changed. I'm glad to hear you are doing better! -Siouxz
  10. Would any of you share your experience of going from episodic to chronic? I am starting to feel like I need to prepare myself for the fact that this cycle is never going to end and I'm going to have to make some changes to my life to adapt to this new reality. I would like to hear from anyone who has gone from episodic to chronic. I'm interested in finding out how that change occurred and how you dealt with it. I have had episodic clusters since December 31, 1999. They have never been like clockwork for me. Sometimes I'd have a few cycles a year, other times I would go 2 or 3 years without a cycle. During my pregnancy I had 2 cycles that lasted for a few months each, and disappeared completely the day after I had my daughter. This cycle has been different. I've tried 7 different prescription drugs, the D3 regimen, kudzu, Vit M x 3, countless doses of seeds. Nothing has given me much relief or made a noticeable change in this cycle. From reading the message boards I know that I am still better off than many others and I try to keep that in mind. Some weeks I only have 1 or 2 nights with a few cluster headaches and most of the time they resolve with O2. But other weeks I have multiple nights where I have one about every hour and the next day I'm left with a migraine that only resolves after drinking a full pot of coffee. I've been on this roller coaster since the beginning of July. 5 full months with no end in sight. I've gone through stages, the first few months I was in panic mode but now I've stopped worrying so much about them. I came to a point where I decided to stop putting my life on hold for these headaches. But now I'm starting to lose hope and starting to wonder if I should accept that they aren't going to go away. I think it would be helpful to know what others have gone through. How did you explain things to your family and friends? I have been in a relationship since January. Half of our time together I've been telling him that this is just temporary and I'll be free of the headaches soon. At some point I should probably admit that I may be wrong. This might be a part of our lives for more than "just a few more weeks."
  11. I started this cycle in July and went through the list of usual meds. Nothing seemed to work so I gave busting a shot. Tried Vitamin M and seeds every 5 days for several weeks with some relief but no end to my cycle. I've never had a cycle last more than 8 weeks so I decided to go back to the Neuro and try something new. I thought I found relief with Indomethacin when I went 9 days without a cluster attack but the weather changed and they came back with a vengeance. Then I tried Nortriptiline and enjoyed a great week with no clusters. Unfortunately that seemed to be a fluke too because I've had 13 clusters in the past 7 days. Getting back to 1 every 2 hours at night again. Grrr. The really crappy thing is that I have always had terrific luck aborting an attack with O2 if I can catch it within the first 5 or 10 minutes. Now suddenly O2 doesn't seem to be aborting my clusters. In fact, it almost seems like as soon as I start the O2 the pain starts to spike. I've had to resort to Sumatriptan injections too many times in the past 2 weeks. I always tried to avoid Imitrex because as soon as I would take 1 shot I couldn't get my cluster to end without another shot or O2. They could go on for hours. Now I want to try busting again but I can't seem to detox for 5 days if my O2 doesn't work. Has anyone ever had this experience? Any changes that helped the O2 start working again? Could it be the sumatriptan? I'm hoping if I can get a bust in and go a few weeks without a shot maybe the O2 will start working again. Of course this is all conjecture, I have no idea why it would work or not based on the meds I'm taking. But I'd appreciate any thoughts or experiences on that from the group. I've suffered through the past 3 nights and I know I'm in for a hell night tonight. I have a tennis meet this afternoon and I know that will trigger an attack. Plus the weather here has gone from 40s to 70s in the past 2 days and that is never a good thing for my head. I just have to stay strong for 2 more days! I honestly don't know how I survived these things before O2. It makes me realize how much I depend on it to keep me sane!
  12. Jeff, So bummed to read your first post and see that you are suffering again. But I am glad that things are starting to look up for you. Hopefully you can get back to busting and end this cycle soon! I think you are probably right that the emotional hit caused your cycle to start. I've had that experience myself. Keep your head up. Good for you for trying something out of your norm to relax. I've been doing yoga a few times a week for the last few months and it really helps to push out the negative thoughts and center your mind a bit. Keep reaching out and don't let yourself get sucked in to the negative thoughts. I know how hard that can be. I've been through some emotional hell before but even with things going relatively good in my life right now, these last 4 months of fighting the beast have pushed me to my limit a few times. When all else fails, watch a stupid funny movie. What About Bob, Better Off Dead, Christmas Vacation. Life goes on. Buck up little camper! -Suz
  13. Eek. And I thought Indo seemed to be a much "safer" alternative to Lithium, which is the drug the neurologist has been pushing me to take the last 2 months. I've been holding out on that one to see if busting would do the trick. My headaches have been changing, new symptoms, etc. this cycle. I've actually had some loss of vision in the eye on the side of my head where I get CHs. So far this cycle (3 months +) I haven't been able to see a neurologist yet. I have had 4 phone calls with him regarding meds. But when I left the message about the vision issues yesterday apparently I said a magic word and I'm getting in tomorrow. Amazing! Hopefully that doesn't mean he thinks something is terribly wrong. But I wouldn't mind having an actual face to face discussion with him and maybe it's time for a test or two. I was diagnosed 13 years ago and haven't had any testing done since and this round is so different than the others. Thanks for your input guys!
  14. I just found the "Playing Well With Others" link and it looks like NSAIDs (Non-Steroid Anti-Inflammatories) are ok. Indomethacin is a type of NSAID so I should be ok to give the seeds a shot by Wednesday since I did use a shot Friday night.
  15. A few weeks ago a co-worker sent me an article about someone who had a dramatic and immediate end to her headache pain with the drug Indomethacin (Indocin). She had right-sided headache pain that sounded a lot like the clusters I've had this round, including the cluster-migraine I've been getting for a full day after nights where I have multiple clusters. Her headaches were diagnosed by the effectiveness of the drug as Hemicrania Continua. Although I was diagnosed with Clusters 13 years ago, my symptoms this cycle have changed a bit and this is by far the longest cycle I've had. So I thought it couldn't hurt to give it a try. Amazingly I went 9 nights without a cluster. I had some shadows during the day but nothing that woke me up at night. I was ecstatic! With a multitude of drugs, 2 Vitamin M busts and 4 seeds busts I had only managed to have 3 pain-free nights in a row in the last 3 months. This seemed very significant to me. Unfortunately it didn't last. Thursday night my streak broke and I've only had 1 good night since then. I didn't have my O2 with me so I had to use a Sumavel shot Friday night. And then today I had a full cluster attack at work, even after increasing the Indomethacin dose. My neuro said there was no way it would work for me, particularly since O2 aborts my cluster attacks. He seems to think the 9 days were a fluke due to changing weather patterns. Ugh. Does anyone know if Indomethacin will unbust? I have a new batch of Iamshaman seeds I'm ready to try again. Has anyone had initial success with Indomethacin, only to have it stop working? Looking at the research, there seems to be at least a few reported cases of Indomethacin-Responsive Cluster Headache. Any other experience with this drug? Side effects? I've been on it for a few weeks and so far no evil side effects as long as I take it with food and Zantac. Long term use is probably bad news.
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