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ClusterBusters

Snowflake

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  1. Snowflake

    Sphenopalatine Ganglion Block

    Hi, I thought I had replied to this... but it didn't update. I read about this being done via the nasal cavity using the cutip and honestly thought that this Dr was going to use this approach, but he said he would rather use the needle. All this was new to me and he reassured me that it wont be that painful. Bastard. lol Told me to raise my hand if I wanted him to stop if the pain was too much. Came to a point where I did raise my hand but he said..."Almost There" and continued. Had my haed supported by ice packs and I didn't want to chance moving with the needle sticking 3/4 way already into my face. lol Busting: I had a bad experience when I first tried shrooms. I somehow think I didn't get the correct ones. and I did 2 sessions of it and the slap back was nasty. I chickened out cos at the time my 2nd hip replacement was relatively still fresh, so I could crouch like I do during attacks and as mentioned, I wasn't too clued up at that point with Oxygen either. So I didn't consider it again. TBH, I always have a fear that if I try busting again I might end up chronic. Just a fear cos after the 2 sessions that I did do, my last 2 cycles/seasons has now lasted 6 months from being the typical text book 3 months that I have always had. Besides, here in SA, it is very easy to get the "WRONG" stuff, and very difficult to find the correct ones with very little resources. There is no acknowledgement/awareness about our condition whatsoever. Its like it doesn't exist and getting treatment for it is a nightmare especially in an emergency at night in trauma... to have to explain while in the midst of an attack... I found myself doing this a lot! There was just one occasion where a Dr that was attending on night duty just put the o2 mask on once I said CH. He even said that he really feels for me having to live with such a horrible condition and warned me to never run out of o2...ever. So I admit, it is my negligence for not having o2 available and waiting until it runs out, but as I said, due to financial circumstances, I tend to try to use till the gauge is almost on empty and I assume I can make it till the next morning. Mostly I when I have 1/4 tank I wait till the am, but those are the nights that I have like 6 attacks. Its like this beast know... damn weird. lol Right now I am so grateful being able to sleep the full night but I am left addicted to pain meds once again and finding it difficult to stop them. Don't know what to do regarding my PTSD cos these psychologists are clueless and they irritate me when they tell me to breathe to stop the attacks! So that were I am right now. Next season, I will probably opt for some stupid surgery and hope to die on the table, hahaha! I also just wanted to say this: I read through a lot of the forums here. I see a lot of people "snapping" at each other and I cant understand why? We are all in the same boat. We all know the degree of pain associated. We are all suffering with the same amount of depression, anxiety, tension in different ways of our lives and have struggles. Why cant we all be civil toward each other, be polite and respect each other? IT costs nothing especially since all we have is EACH OTHER? No one will ever understand this better than all of us that are in here. We should really drop the wall when it comes to each other and realize that we are here to help each other. Some are just starting off and don't know anything regarding treatments etc. Some are going to claim to have found the cure as much as we all know that there isn't any and that we may not even get to be here if they ever do find one. But I just feel we need to look out for each other. Its not a specific post. I am speaking in general from the vibes I get reading past posts. Just a suggestion, I'm not an expert in this all, if anything I am just as clueless as the next person. Thank you for responding and I hope those in season are coping or at least trying to. My thoughts and good wishes are with you. Oh and I confirm I have finally become an atheist. (Also something different that happened this year) Take care!
  2. Snowflake

    Sphenopalatine Ganglion Block

    Good day Fellow Survivors, I hope you are all coping. Just wanted to let you guys know that I completed my season this year about 2 weeks ago. Started in Feb and I find that my recent cycles have been worse. I did have some really nasty ones. This year left me climbing up walls in hospital, pushing my wife through the window and breaking some stuff at home, all whilst damaging both my hip replacements in the process. Yep, It got ugly. Unfortunately all these events took place during moments that I ran out of o2 of course and the little that I had ran out during treatment, which I think is worse off than not doing the treatment at all, if you gonna run out. as always, I learn and never learn at the same time. Morphine did nothing either so Iv'e learned. It got ugly. If I look back at previous cycles in the last 24 years, It seems I tried something different each time and in the process end up messing myself up even more and of course it all comes back to oxygen in the end once again. I really don't know why end up making wrong choices, but I know that I was experiencing really bad PTSD just before this cycle started so my mind was messed up also... Ok, so this year I came to many points of suicide. The word "suicide" even now, seems heavenly to me and in my mind, I have killed myself a thousand different ways. I ended up staying awake after my first attack at night until the mornings to save on o2 cos to be honest, I am financially drained. Aside from being emotionally and physically drained as well. Anyways, I had occipital nerve blocks done on 4 occasions this year and it lessoned the frequency, but was unsuccessful. So I decided to try the sphenopalatine ganglion block. I know this has been discussed on here before, however, I just had to do something. I didn't care of the consequences cos I was prepared for the worst and to be honest I am so tired of living like this. I must say upfront even though we suffer with Cluster Headaches and we all can relate to the pain associated, that this procedure is really not for the faint hearted. I had it done under no anesthetic and wide awake with my head just in the entrance of an MRI machine as they took imaging each step of the way. It was really sore. It was a hectic long needle as well. Once he was behind my eye up to the forehead on the affected side , he triggered a MOTHER of a CH and then released cortisone and alcohol to see if it aborts the headache in an attempt to eventually burn off the affected vessel. It did abort the attack. I was left with severe numbness and my face felt like it was drooping quite badly. I had double vision and thought I had a facial stroke. The Dr reassured me that this feeling was normal and would eventually subside. Which is did later that evening. Once that numbness wore off, the pain of where the needle was inserted started to set in and was uncomfortable. I still have slight discomfort up until now. The attacks then stopped for 2 weeks straight. No shadows. Nothing. Then it started again for another month or so. But mild attacks and less frequent. Then it stopped. However, I know for a fact that this procedure didn't stop the cycle. It was nearing the end of my season as well. I am glad that I went ahead and tried it though. As I mentioned, I would try anything as I really don't care what happens next. I know that sounds selfish and stupid but I have reached my threshold for pain and I don't thing I could be anymore depressed or anxious than I am right now even though the season is over for now. I have heard from some doctors in the past that It can end completely when you reach 40 in "some" cases. Depending on when it first started. But I obviously think this is a joke and at the same time I have a tiny spark of hope as well since I will be turning 40 next month. I don't mean to diminish any hope fellow sufferers have. I am merely just updating on my experience this year. I tend to update on the group once in a season. I have attached a copy of the x-ray regarding this procedure. I still have an oxygen tank in my car and take it wherever I go. But I need to let go of it soon since the season is over for now cos rental kills me as well. Thanks for taking time to read and PF wishes always.
  3. 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
  4. 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
  5. 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.
  6. 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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