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ClusterBusters

Snowflake

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  1. Snowflake

    Cluster..?

    I think I may have found the problem. I tappered of the prednisone a bit too quickly. Cos the moment I increased the does I felt much better and even the shadows have faded. Thanks
  2. Snowflake

    Cluster..?

    Hi All, I am an episodic CH sufferer for the past 24 years. I am currently in season, well, going on 4 months now. Most of this season I went cold turkey without any meds and paid an ultimate price last week with some nasty attacks. Only then did I get my O2 sorted and went onto the usual meds for a week. My last 2 days were CH free as I wanted the cycle to end naturally. I just wanted to know if anyone has experienced 'very similar' pain on the affected orbital area. It feels like a cluster only you know that it isn't cos there is no response to O2 and gets me only at night. It's not as deep as a CH. Once I wake up it subsides after 10 mins. I'm not sure what this is as I never had this before throughout the cycles. I have been for a few occipital nerve blocks earlier in the cycle as well. I apologise if I am not describing this properly. I really don't know how else to, since it resembles so much of a CH except I know it isn't one cos I even get some sort of relief if I apply heavy pressure to my eye yet the pain runs on the same vessel as my CH. Somewhat more of a burning pain than the 'drilling/boring' pain of a CH. Any help would be appreciated Pain free wishes always Thanks
  3. Snowflake

    Different Approach

    Thank you all for the warm welcome. I really appreciate it. Yes I have tried MM last season. I know I didn't do them correctly or rather, follow through as I "chickened out" after having terrible slap-backs and especially when the vessel is kinda like swollen already, having slap back's was torture. So I stopped after the first 3 doses. I think cos I stopped suddenly, my cycle went from 3 months to 6 months, back to back. So I was now in Hell with the beast for such a long period. A lot of fellow sufferers swear by MM and I don't doubt that they work, however, I think I'm too scared to try them again after my last experience lol. However, I do have such relief this year after going the route that I did. I know coming totally off meds whilst managing the beast and being PF is the key objective. I will get there one day. For now, this combination seems like its working so well. I even noticed that when the aura/shadow starts, I just massage my ear (piercing) or cup my whole ear and massage in a circular motion and it somehow aborts the attack. In fact I have aborted every attack this way. I know it sounds stupid or silly knowing that we have all have tried so many things, but this really helps me. I hope it helps others as well. Thanks guys.
  4. Snowflake

    Different Approach

    Hi Fellow Sufferers, I have been CH for over 20 years now. Had both my hips replaced due to AVN of the hips, after prolonged use of Prednisone at the early stages of my CH. Back then we really didnt know what this was. Having been through the mill with regards to all the meds and injections, this year/season I did 2 things differently. Firstly, before my cycle could start, I had a Daith piercing done in December since I heard it helped for Migraines. So thought I would give it a shot. Worst case senario if it didnt work I could just take it out. Secondly, I am on 400mg of Epleptin, which I initially started at 100mg and increased it by 100mg each week till I got to 400mg. So im currenly taking 100mg in the morning and 300mg at night as this can make one a bit drowsy till its used to the system. Look, im not saying this is a cure and im not sure which of these is helping me, however, after 20 years I can say that I have my life back. I can function in my everyday life like usual. Yes i still get attacks but its really so mild and it sometimes skips a day or 2. Some days i get 3 at the most but they are short lived attacks and i havent even used an injection to abort. I hate to sing praises so early as I have learnt over the years that what works for one might not work for the other or the fact that this might only work this season and not the next. However I do think its worth the shot. Aside from these, im not taking any other meds and glad that I dont need to reach for the injection. The last thing i want is to have a heart condition, going forward. Apparently, Epleptin is not Epilim. It was known as Neuronton in the past. No aggressive side effects. May take some getting used to regarding sleep patterns though. I hope this helps. If you require further info about the piercing, I would be glad to tell you how it went. Goodluck and PF wishes to all.
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