Snowflake

Hi Jonathan Thank you for your reply. I agree with you take on this situation. Familiar with the ever so popular slapbacks. Just found it strange that if it was a slap back, it occurred immediately as soon as the drip was turned off. Instantly is a more better word I guess. Given my experience with slapbacks when using MMS , It took almost 20 mins and more to occur. In addition to this, I was anxious before the treatment and since a had a one hour drive to the clinic in pissing rain, my car broke down just as I got onto the interchange. Luckily I did have a return driver with me, so we somehow managed to turn back. And use my old 1989 Ford V6 which was sitting in the garage. Lol. Surprisingly it got us there and back as I never used it so far before and given the weather, I was even more anxious. Temperamental wise, I found that I took ten or more steps backwards that evening after infusion. Even though I didn't get any attacks since. I know Ketamine works over time and is not proven to stop depression completely. I guess in essence it can aid in managing it at a cost and once you stop, you go back to square one. Especially for a ch patient. The money was a stretch to have this done but I'm am glad I had the opportunity of at least trying it. I would recommend anyone who can, to try atleast one session. You have no idea how beautiful your mind is. It's 7.47am here in SA now. Just woke up. Realised I had a full night with occasional breaks in sleep but not for CHS. Just intermittent sleep breaks. I guess it's an habit now. However, no side effects or anything out of the ordinary with me after this one session. I hear what you saying. I appreciate your reply. Go well and allthe best. ❄️

Thanks for this. The Dr did mention something about "K-hole" now that you mention it.

Good day Update: I had my first Ketamine Infusion done this morning at 8am. It was a 40min infusion. I really cannot describe it although I will try. It eased in via an IV and I slowly found myself inside my mind somehow. It was like nothing mattered. As if all you needed was imagination even if you couldn't see. I found myself creating whatever I wanted in my endless mind. It felt so good. Everything became so clear. Ultimate serenity. Calm. I never knew that my mind was so capable of anything I desired. Negative part: Even though I suspected my cycle of starting last week with a few attacks, I didn't get any attacks since Tuesday. However, as soon as they stopped the drip of ketamine, I instantly had an attack, however, I asked the Dr to be prepared with O2 incase of this happening. Which he was. Aborted the attack in 10mins. But both him and I found that strange that it triggered the attack the moment the drip was stopped. So from my experience previously with antidepressants or and kind of seratonin inhibitors, I found that those brought on a cycle. Although Ketamine is part anaesthesia, I did warn him about increasing seratonin and the adverse affects.. still I took the leap. So in essence, my personal experience with Ketamine was pleasurable until the CH showed up. Which means that I will not pursue further treatment of ketamine. Unfortunately, this just gives me another reason to hate CHs as I feel this treatment is beneficial to everyone one earth. (In accordance to their personality and perseption of course.) A small percentage may feel a sense of no control of their inner being and that could lead to paranoia. Yet I am like that and this didn't happen to me. So it could be that he adjusted the dosage to suite my weight. I received 40mg as I am 63kgs. This is my personal experience and as promised, I have updated and hope it may help someone who is wondering what to expect. Like I said though, everyone is different and may or may not have the experience I had. So this is another treatment I crossed off my list. I obviously didn't do this to stop CH. I did it to cope with anticipation of CH cycles and for depression, anxiety and to deal with my suicidal thoughts and past attempts. Thanks for reading and pain free wishes. Back to the drawing board and going the D3 which Spiny is helping me with and I appreciate it.

Hi Spiny I hope you are well my friend. Please can you message me your email address. Thanks

Hi Spiny Thank you for this. The thing that stood out the most from what you said was that I have a countdown till hopefully something will help me cope. This feeling is a roller coaster. Today I woke up great. Good start to the morning. Was perfect. And then I hit a slump. I have no idea what I am depressed about cos I'm not thinking of anything depressing. Not even the Ch. I just have this helpless feeling and along with it comes nausea etc. Then everyone around me wonders why I'm so silent all of a sudden. It's like I don't know how to even explain cos I myself don't know what the heck is happening. I will be prepared for the worst but can honestly say that this feeling of anxiety is consuming and exhausting. I'm also tired of complaining. Eager for a 'feel Good' pill of some sort. Then I remember, we aren't 'allowed' to feel good cos seratonin, for me, brings on the beast. Again I agree that atleast I have this space to put down my feelings and thoughts. Even if no one reads them, I get it off my chest cos deep inside what's left of me, you all can relate and that fact alone gives me solitude in some twisted way. So thank you. D3 and me. I think I didn't take the time to do this regimen correctly and acted out of desperation. I never gave it the chance it deserves I guess. I know I will go initiate this process one day. Just don't feel like downing any more pills. I need to be in a better frame of mind to concentrate on what I am doing not only for the D3, but in every aspect of my miserable life right now. Caffeine works for me. I don't know about you but it makes me a bit aggressive. I tend to lash out at people that don't deserve it. Heck, my manager thinks I need stress leave right now and want to book me off for a month or so. At least I'm not fired. Lol Luckily my spouse is still at my side after putting up with me for a long time. Even though I sometimes feel that we didn't ask for this condition and that everyone should understand or leave us alone. I still appreciate the ones that do still stay. Keep well and of wishes to everyone. Will update after the Infusions are done.

Hey there buddy, Thank you for replying. I don't know that some of us do not even have the capabilities and energy anymore to even look at our computer of phone. What concerns me the most right now is that I am in a place where I am due for a cycle but he never shows up. I really don't know whats worse anymore. its like come on lets get this started instead of a shadow peopling at me 5 times a day. I am hooked on proscription ant OTC medication to try to "numb the way I feel inside. Friends, I have no control over my enthusiasm. Simple things that i used to do to keep my mind busy where ever i can has become a challenge to even get up of the sofa to take the initiative to fix etc. I want confirmation that it am not the only one feeling this way, cos It would make me feel that this feel may minimize or go away if i am lucky. I am dues for the season to have started a few months ago. But nothing had happens except a manipulating game of shadows, which makes me terrified. I really appreciate all the support i receive from this group and yes, suicide is like waving candy at me. No I didn't go as yet for my Ketamine shots due to finances and can only schedule them probably in the first week of December. I am sure you would all agree that this condition actually creates such a ripply effect that we feel as if no one would 'truly" really ever understand it from our point of view. It is exhausting to even try to explain to anyone. And then there are those that mock the condition, and even though I always say that I would never wish this pain upon anyone, I sometimes which they experience it just once. A cry for help eventually becomes an annoying situation of someone that keep complaining. Yet you still have responsibilities and people to answer to. I am struggling with fear. depression, anxiety and I am hooked on meds just to numb my emotions and in a way hiding from the shadows. The only thing that i find solitude in is music. Feels like i am "stuck" and the world is still turning, It weird. I hope this infusions can extract me from my vessel and help me re-asses my purpose here and also restore my will to spark an energy that would allow me to continue moving forward. Work thinks I need time out as i snapped at a process partner that wasn't playing his part in an important act of duty, since 2018. So I lost my mind and I guess its becoming impossible to contain the damage that has already been done all these years, whilst expecting no one to understand. The only thing I try very hard to do, i distract myself wherever i can. From experience, can someone please tell me if this is normal to feel like this (Exactly 1 year since the last season) or am i missing something? Is my mind subconsciously re-living the torture with out the pain and giving me all the side effects? I just came here to vent and hopefully find some answers. I hope its ok. Thanks

Thank you for responding. It means alot to me. I hear what you are saying. I can only hope that this Dr knows entirely about cluster headaches. Upon chatting with him, he mentioned that he has administered this to CH sufferers and it helps them deal with the PTSD . Even so, upon my consult with him face to face, I will bombard him with further questions to try and gauge whether he really does know what he is doing. The trouble in SA is that sadly, Ch awareness is pushed under the carpet which probably sits on an unmarked grave. I do try to raise awareness wherever I can. Finding more of 'us' is a challenge here. However your inspiring comment about me finding or having a purpose here to fulfill, gives me joy, I must say. I find myself just staring at a blank wall some nights. I feel the need to keep my mind busy in order to keep my mind from being filled with negativity. Look up at the ceiling for a place to tie a rope... It's difficult my friend. Suicide seems like such a wonderful thing to me. But you know, leaving everyone behind is not easy either. So that balances that thought. I will give Ketamine a 'shot' and when I do, I will be sure to enlighten you and the rest of my experience. Maybe it will help others. Been a pin cushion all my life. So what the heck. And thanks for the heads up. I appreciate it. Pf wishes

Hi guys, I am sorry if this seems like i am hijacking this post, however it caught my attention. So instead of starting a new post, i thought i could get my answers here if nobody minds. As per all my previous posts I am an ECH sufferer from the age of 16. I just turned 41 on the 16th of September. Yes, I hang on to the hope of it going away at this age as per my neurologist but if this journey has taught me anything, its to not put all your hope in one place. Let's just say a part of my inner self wants to believe this can be possible. Moving on, my last cycle ended after one year roughly around my birthday in 2019. I had a Sphenopalatine Ganglion Block done. They opted for the "needle" through the side of my face route instead of the nasal cavity. Was painful. No anesthetic besides the local the rubbed on the skin before insertion. After the block I had 3 days PF and then a week of CH and then they stopped. I am till this day, not sure if the cycle ended or the block helped. I wont be hopeful there either. So I just wanted to know, pertaining to "Suicide", The thought is constantly in my head (or whats left of my head) every damn day, whether I like it or not. I have days where I don't think of the beast returning, however, I feel suicidal. Heck, i attempted suicide twice and then realized that it was not my time since obviously my ghost is not typing on here. (Some one needs to teach me how to tie a knot properly and Co2 tastes terrible and gets messy lol) Also, the thing that seems extremely magnetic to the thoughts of suicide are the terrible depression and anxiety I constantly live with every day to the point that I dont know whether to hope the cycle starts or what? I am not eating properly and lost 20kg's from being at 78kgs. I am a real a$$hole towards people and i am unable to control it, nor can I defuse the situation if I tick someone off as I get hot headed even more and given the fact that both my hips are replaced, I would be pulverized, should things get nasty. But this "attitude" of mine wont let me calm the hell down. Yet I was never like this before. Seriously, I wasn't. Batch can vouch for me, he spoke to me a while back. My question is regarding this Ketamine Infusions. I have researched it to a certain degree and from a "normal" persons perspective, and it sounded like candy to me. I called the clinic that specializes in this infusions here in SA, and they are obviously willing to drench me with it, however, I wanted to hear what you guys have to say about it from a CH point of view? Is it really safe? will it bring on a cycle? Does it really help for someone in my situation? As mentioned, I am depressed, suicidal, anxious, in pain from the new hip joints since i lost weight, the muscle is frail and can hardly hold up my new prosthesis's (if that's even a word for multiple Prosthesis lol) Please also bare in mind that I do not respond well to any sort of drugs. Even simple things like weed etc. It just makes me paranoid. So i stay away from drugs and alcohol and have been so for all of my life, except for the time I tried them of course. I decided to OD on O2 should he return going forth and nothing else. Not even the D3 regimen since that was a fail and I didn't respond well to any of the stuff I tried. Yes some are going to say that I did them wrong and didn't get the correct stuff etc, and you are correct. That's cos SA is the shittiest country on the planet and no one like helping others here. I am tired of being treated like a drug addict during those mornings that I find myself in the ER before they give me oxygen, you know know those times also, I'm sure... when you could kill the Dr and the nurses for seeing to you after the beast has grated half your brain out and all yo wanted was a "breath of fresh air" cos you ran out. I have made peace with the fact that I am a sufferer and may or may not proceed to be one going forward. However, I want my next few days, months, years to be "normal" and if you think Ketamine could do this, then please leave me a comment. It is expensive and as we all know since CH are not classified as a chronic condition by medical insurances here, we have to dig past the holes in our pockets to hopefully find a penny in our shoe to pay for all the meds, Oxygen etc. Hence I run out. Hopefully, someone can improve on an O2 machine that will eventually generate the flow rate and concentration that we require, instead of people like me wheeling a tank up and down, fking up my hips even more every 3 days (During cycle) Everybody responds differently to stuff. I posted this in the hope that I find my difference. PF Wishes Buddy's Mind the spelling and pardon my sarcasm, the author has nothing left on the right side of his head.

My one year remission is almost up. No sign of him just yet. However this time I am considering Ketamine Infusions, if not for the CH, then for extremely terrible PTSD. Can't function like a normal human anymore. Then again... What's normal. It is expensive. Like usual, the Dr reassured me that he has had success with Ketamine treatment for CH and TN. I just want something to get me of pain meds addiction. And to 'numb' the fear of him returning. However, I will attempt the treatment after November this year. As I mentioned in previous forums, I am a pin cushion and I don't care if I die or not. I just want peace especially if I'm alive. Hold thumbs PF wishes

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!

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.

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

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

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.

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.