Snowflake

Hi guys. Hope you all well. I unfortunately I have a bad cold. I am on a strict D3 regiment and it's working like magic until last week. Few mild visits from the beast which O2 handled well. Checked D3 levels and was sitting at 41. So I loaded 150 000iu since last week. Attacks are around 2 mins and milder. However here in SA I can't get benadryl but the closest thing is AP-Loratodine. Reading online and the insert it is classified as H1. Just want to know if it's safe to take this to stop the sinuses as I'm battling with this flu. Phlegm is non stop. Tried all the Vicks inhaler etc but not helping. I am itching to take the loratodine, but thought I would check if it could bring the season on or not? Please help Kind regards

Hi all, Update: Like you said xxx, I did still get a few attacks. All were in one night and thereafter nothing. I managed to get my D3 Bloods done and happy to report that from 18 I managed to push it up to 73. I feel this made a huge difference. I am maintaining this dosage at the moment. I noticed that the usual triggers do not affect me anymore which is great. So I get to eat what ever I been staying away from. Perfumes etc don't even give me a shadow. My tank of oxygen has been lasting me over 1 and half months now. Just keeping it for back up. So far so good. I feel great! Thank you and pf wishes. Snowflake

Good day all Just an update. It's been well over 3 or 4 weeks into the D3 regimine. From 9 or 10 attacks to 0 per night. I feel great. Just having a full night sleep after so long is heavenly. I must say that this is a breath of new air into my life and I found purpose to live again. Too late for regrets now as this could have saved both my hips and needle through me face and other painful procedures I put myself through out of haste and frustration. However, I see only positive things coming my way and there are basically no words to express my gratitude to those that helped me. Love to all. Snowflake

Hi Thanks alot. Yes he is. He did video call me once. Awesome guy. Thanks again I will private message. Didn't know he changed his alias. Thanks

Hi Any idea how I can get in touch with Batch directly please? Thanks

Thank you. I will monitor it. I'm sorry that O2 is not effective for you mostly. I didn't know about the breathing rate and HBP would have an effect on O2 levels. Interesting. I will keep monitoring and testing. Today I checked the O2 readings and was all over the place again without shadows or anything. Consistent 99% again when I checked on my wife for same duration. I need to find few more tests along with sticking to the same times I do the tests. subjects in order to try and find a pattern. Will be in touch. Thanks again

Thank you Chfather. This means alot. I speculated before posting. Now I'm glad I did. I wanted to upload the video I took of this happening and the size of the file is to large. I just did the same test this morning as the attack started. I waited for it to increase in intensity. The O2 was at 99%. Then in 9 seconds, it dropped to 87% then 65% then came down to 59%. I managed to keep it together and check my blood pressure quickly. It was at 135/84 at that point. Then ripped the thing of my arm and headed over for O2 as I need to abort mission. Luckily It went off in 7mins. D3 is really knocking em dead for the night. Cramps are waking me up. Every hour. I didn't take magnesium yesterday just tobsee if there is a slight improvement bon cramps but maybe too soon to tell. Will leave it out for another 2 days or so and take it from there. My mission is this O2 thing which has me very interested. I checked during the day yesterday, whilst in was feeling perfect, and it was still fluctuating badly. Very eradic and weird. And I keep thinking it could be the device but my test subjects are always on 99% Thank you for replying

Hi friends. Hope you all are keeping well. I managed to get an oxymeter, mainly for checking both my wife's and my levels during this time of the pandemic. However, It so happened, the day I got it, I also had a few shadows that showed up during the day as I am mainly nocturnal. Also I am ECH in season. So I checked her O2 levels about 3 or 4 times and it was always at 99%. At that point one of my shadows showed up and I tested mine. The results was shocking to me and rather interesting at the same time as I never even got up to 97% and went as low as in the 80s. This being said, I decided to test during a full blown attack and my levels was all over the place. It even went down to 68%. (I assumed I should be dead at that point) At the same time, I checked my blood pressure and it was lower than than when I checked it before going to bed when I was Ch free at that point. Also, even when I don't have a shadow or any sign of the Ch, my oxygen doesn't or rarely reaches 99% I then started O2 during last night's attack and even with the recommended flow rate with the correct mask etc, my O2 took very long to increase, and when the attack aborted, my levels still had not reached past 94% Switched the oxymeter over to my wife and hers picked up 99% yet again. The reason I am posting this is cos I wanted to get some advise on whether I should go for a CT angiogram to check my heart? Now, this makes me think that it could be that even out of cycle I am not getting the required oxygen like non sufferers. Seeing that I did have a few head trauma since little and being a sufferer for 25 odd years, and even though the question about why is there remission if this looks like my usual oxygen levels all the time. Please excuse me if I am speculating a bit much but these to me, are worth mentioning. I'm guessing that since I'm a spring sufferer, something worsens due to the moon phase which has an effect on the pressure regarding fluid in my head as well. So the rest off the seasons, are fine cos the climate aspect does not react to the magnitude that it does for me in spring? I dont know. These are just 2 reasons I can think off as this is so weird to see upfront especially when I can clearly see that there is no mistake with the readings. Any feedback or thoughts will be appreciated and pardon me if anything I did say sounds stupid. Other thing is that I am amidst the D3 still and it has really improved the frequency and intensity. I'm so glad I can breath and steal sleep more with each day. Just the leg cramps that get me jumping out of bed. I read posts here about it but I am still not sure whether to increase the magnesium or stop it for a few days. But the cramps are really hitting hard especially at the arch of the bottom of my legs and my hands. Fingers get locked while I'm writing or even holding a cup of tea. I am weening of prednisone still and I know thAt prednisone does cause cramps, but not to this level. First time experiencing such bad ones. Thanks and keep safe.

Hi All, I, for the first time am currently following though with the D3 approach. It's been almost a week and a half of stagnently starting it as I did not have immediate access to all the vitamins mentioned. However I do now. I have my O2 ready on standby. Whilst I always hate to count my chickens before they hatch, there has been improment. ie. From 9 nocturnal attacks, I'm gone down to 2 per night. I have been stealing much more sleep in the last 3 nights, which feels great. I know It does take roughly 3 weeks to kick in correctly as I am still loading as per the D3 schedule provided. However, I must admit that this is the most effective approach and promising results I ever felt in 25 years. The attacks that I do get are less painful, less frequent and shorter already. This is just a note to say a huge thank you to Spiny and Batch who has so selflessly helped me get in the wagon without delay. You guys are just too awesome and help without hesitation. This will come as a shock to all but my D3 levels were at 18.5 at the start of this cycle. It also explained why my nocturnal attacks were so fierce and frequent. I will be doing bloods every so often to make sure it does not ever go to this figure again and will keep it in check. It is just 'suspensful' to visit clinics or labs right now and brings fear of contacting covid. However, I will plan appropriately and take all the relevant measures. I will admit, the hand sanitizers do pose a bit of discomfort, seeing that it does contain alot if alcohol. However, I try to either hold my breath ever with the masks on and keep my hands away from my face. After. While it does evaporate. Even though our skin does absorb some eventually. I carry cooler with Redbull and a portable tank each time I am required to leave my house. So that's cool. So thanks guys. You have no idea how much you have helped me and I am truly grateful. You saved alot of lives including mine and I can feel some sort of ' control' over the beast. This gives me hope which is the only thing I can cling to. Also, if you are out there and like me, hesitant about the D3 approach, I beg you to reconsider and keep to it. Honestly, I have no doubts about it anymore and it is the safest thing I have ever tried in my CH life even though I know I still have a long way to go. Understanding that I will be on this treatment for the rest of my life, cycle or not, The only question that circles my mind right now is once I am 'D3 complient' and out of season, do I still avoid all the triggers? Much appreciated and pain free wishes to all and stay safe. Snowflake

Hi Chfather, Thank you for the compliment. I hear what you saying. Yet the mask is the non rebreather mask. Yet I found I was still losing O2 while holding in my lungs. Out of habit I tend to hold it in as long as I can. Hence the bag over fills and spills out up to my eyes and through the sides of me face thereby losing some O2. I find it is working for me regarding my method of taking O2. I used thread tape on all the connections to avoid O2 loss and It worked. It important part was having a good gauge pipe from tank to the gun as the pressure is similar to an air compressor. So I guess after the attack I can blow out "beast residue" my face. (Kidding) I know I could lower the Fossett on the tank but I was being experimental and trying to have fun with some ideas. I just wanted to share as I was proud of what I did. Lol. I'm sorry if I am replying again. I typed and for some reason everything I typed seemed as if it didn't go through. I received my 4.6kg tank yesterday. It came to R1380.00 here in SA . Plus I have to pay R217.00 per month for rental. This was private. My medical insurance authorised O2 for me but failed to acknowledge the size of the tank I required and gave me that small one in the picture which is a 1.8kg. nevertheless, I won't complain since now I have 2 tanks. The small one will by nifty to use when mobile. Plus it's paid my medical insurance. Something is better than nothing right? Thank you for taking time to reply to my post. I really appreciate it very much and pain free wish always.

Thank you jon019. I really appreciate it.

Hi All, I made this thing to control the flow of oxygen instantly so I don't let it waste away when I'm breathing out. So everytime I breath in, I press the trigger. It releases oxygen. Then while I hold the oxygen in I can let go of the trigger and tank will stop. So it doesn't keep flowing for nothing. It will save me by 50% if the tank and therefore each tank will last longer. I could have found a smaller press valve or switch, but I found this to be working so effectively and just a slight squeeze of a trigger. Note that the pipe from the tank to the gun must be thicker for obvious reasons. Also I know this tank is miniature. Cycle just begun, so my big tank is arriving today. Just an idea I thought off that might help others. Probably others came up with this too. But anyways. Costed me R30 here in SA which should be about 2 dollars. I can't upload a video to show it working cos of the size of the file. But I think you get the idea. Pain free wishes to all. 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