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siouz76

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About siouz76

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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
  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.
  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. I
  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 aft
  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 I’ve never felt anything this painful in my life. It’s funny how I forget how truly awful the pain is when I’m out of cycle. This past reprieve was 18 months and I am grateful for the pain free time. But I’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 cyc
  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 tem
  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 wit
  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
  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 su
  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 m
  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 th
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