BoscoPiko Posted August 12, 2021 Share Posted August 12, 2021 Hello to everyone on here and sorry to everyone on here... I just recently discovered this site (thank goodness). There is still a part of me that doesn't want to believe that this is my new future but it appears that way. All I was doing was sitting there, got up to let the dog in and boom... That fast my life was stolen just like the election. Body went flush, my rt eye wouldn't stop tearing and about every three seconds I was being spiked in the right temple by something forged by the devil. Of course I called the ER and told them of my plight. In this day and age they ran me through the gamete of very unnecessary questions such as if I had been to the Congo of late or allowed anyone to sneeze directly in my mouth etc... Anyhow... I am very confused because after watching some of the videos on here and reading on the Mayo Clinic of things that exacerbate most folks with CH I just don't understand a lot. Example, I can drink alcohol during a cycle without adverse affect? I don't get a swollen or red eye or runny nose? I fired my first doctor because she wouldn't let me see a neuro and kept telling me I had migraine. She then put me on Topamax (which I have found to impair my cognitive ability a bit) and propanol. Neither of those did anything. I continued to have head bangers that made me want to die that lasted for over 3 to 4 hours at a time up to 15 times in a month usually for 3 months and then they would leave for about two weeks. I got so desperate that I started calling everywhere and one late evening when I called I Kaiser (hate Kaiser) I got routed to a Kaiser out of my area, they set me up with a neuro. I was lucky in that he LISTENED and said if you can't lie down and you pace, rock back and forth, no nothing is touching your pain sounds like CH. Problem.. Verapamil is making me sleepy and weak sometimes my heart rate goes so low it scares me.. I am so depressed I am not me anymore! I am a horse rider and a boxer. I've always worked out and taken really good care of myself but i feel myself giving up! I am 41 and have had horses almost my entire life I have missed an the last 3 months of riding because the verapamil is not working like it used to I was on 360mg per day then increased to 480 and the neuro told me that was max I got desperate and upped to 600 now I'm so tired I just cant take it. I've been taking magnesium, B-12, D-3 and COQ-10.. Any insight is so welcomed... I'm getting tired and I don't want to give up. Yes I have oxygen and proper rebreather mask and regulator that's me go to 25 it works sometimes and not other... Quote Link to comment Share on other sites More sharing options...
xBoss Posted August 12, 2021 Share Posted August 12, 2021 (edited) Hey Bosco, sorry that you have joined our club but welcome! You seem like a cool cat, you will get along fine here. You got this, a great place to be. It's a mental game, stay strong, I'm on year 23 after they hit when I was 27. Edited August 12, 2021 by xBoss 3 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted August 12, 2021 Share Posted August 12, 2021 Welcome to the site. Many things on here for you to try out but the first thing you should do if you have not already is click the New User link at the top of the page. This will give you a good overview of things on this site. You said you have oxygen so you have a good head start on this game. Make sure you have a good mask that does not let any outside air in when your using it and that you are never waitin for the bag to refill. You will need o\to work on different breathing techs until you find the one that works for you. Some like to breath fast and others take deep breaths and hold it, this will need to be tweaked until you find what works best for you. Another trick to the oxygen is to down a 5hr energy drink or very strong coffee to help the oxygen kick in a little faster for you. You will want to look into the Vitamin D3 regimen that one of our members has developed, his name is now XXX on this site and he will answer any questions you may have. Busting is another option you will end up running into here and you will have a lot of information to read up on for that also. Main thing is you are now in a good spot to fight this and people around here will help you along the way with things they may have tried. Poke around and ask questions! 4 Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted August 12, 2021 Share Posted August 12, 2021 BoscoPiko, I'm no doc, but that amount of Verapamil sounds scary. If your heart rate is too low, it can cause other very serious medical conditions. I'm a huge proponent of busting. It gave me my life back and many others on here. As FunTimes mentioned take a look at the new users info at the top of the page and the ClusterBuster Files section. Energy drinks can really help the individual attacks. For my night hits I keep an energy drink on the coffee table 24/7. As soon as I wake with a night attack, I slam half the can and get on the O2. Make sure you stay on the O2 for 10 mins or so after the attack stops and it'll help delay the next attack. I've never had an issue falling asleep after the energy drink. Post hit exhaustion and I'm out like a light (till the next one anyway (2nd half of the energy drink is for the next attack). Oh, on Verapamil. I know most docs script it as a first thing to take but... Studies have shown it's maybe 5 to 10 % effective. If you're in a really bad place a prednisone taper is an option. Definitely don't recommend that route for more than one (short) round though. When you're about 2/3rds away through the taper, CH comes back. From memory, it'll give you about 2 weeks pain free time. It's not long, but sometimes is long enough to regroup on your avenue of crushing the beast. Definitely don't do more than one round of pred though. It'll wreck your body. Staying away from foods that are high in Tyramine should reduce your frequency of attacks. Tyramine is a natural inflamatory and is present at some level in nearly every food. It's a byproduct of fermentation and aged foods breaking down. No fermented cheese, preserved meats or old fruits and vegetables. J 3 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted August 14, 2021 Author Share Posted August 14, 2021 On 8/12/2021 at 5:00 AM, FunTimes said: Welcome to the site. Many things on here for you to try out but the first thing you should do if you have not already is click the New User link at the top of the page. This will give you a good overview of things on this site. You said you have oxygen so you have a good head start on this game. Make sure you have a good mask that does not let any outside air in when your using it and that you are never waitin for the bag to refill. You will need o\to work on different breathing techs until you find the one that works for you. Some like to breath fast and others take deep breaths and hold it, this will need to be tweaked until you find what works best for you. Another trick to the oxygen is to down a 5hr energy drink or very strong coffee to help the oxygen kick in a little faster for you. You will want to look into the Vitamin D3 regimen that one of our members has developed, his name is now XXX on this site and he will answer any questions you may have. Busting is another option you will end up running into here and you will have a lot of information to read up on for that also. Main thing is you are now in a good spot to fight this and people around here will help you along the way with things they may have tried. Poke around and ask questions! Thank you for the response. I appreciate you taking the time and I will check out the new user link. I have watched some of the videos on here about the use of oxygen and proper masks which led me to purchase the ClusterO2 kit from this site and a regulator that lets me go up to 25 (the one I was given from the Doc has never helped and was exactly what the video said was "nothing"). I did receive what I thought was an auto response about vitamin D3 but I still have read a lot about it in my desperate search and went out and bough the fish oil today. I already have everything else except the Super-K and one other item I cant remember the name of at the moment foliate something or another. I have been taking D3 in pretty high doses but i suppose it wont help if my body is not absorbing it. I did see the mention of Busting boy do i hope that means busting out of this!!! Thank you again! Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted August 14, 2021 Author Share Posted August 14, 2021 On 8/12/2021 at 7:20 AM, ThatHurtsMyHead said: BoscoPiko, I'm no doc, but that amount of Verapamil sounds scary. If your heart rate is too low, it can cause other very serious medical conditions. I'm a huge proponent of busting. It gave me my life back and many others on here. As FunTimes mentioned take a look at the new users info at the top of the page and the ClusterBuster Files section. Energy drinks can really help the individual attacks. For my night hits I keep an energy drink on the coffee table 24/7. As soon as I wake with a night attack, I slam half the can and get on the O2. Make sure you stay on the O2 for 10 mins or so after the attack stops and it'll help delay the next attack. I've never had an issue falling asleep after the energy drink. Post hit exhaustion and I'm out like a light (till the next one anyway (2nd half of the energy drink is for the next attack). Oh, on Verapamil. I know most docs script it as a first thing to take but... Studies have shown it's maybe 5 to 10 % effective. If you're in a really bad place a prednisone taper is an option. Definitely don't recommend that route for more than one (short) round though. When you're about 2/3rds away through the taper, CH comes back. From memory, it'll give you about 2 weeks pain free time. It's not long, but sometimes is long enough to regroup on your avenue of crushing the beast. Definitely don't do more than one round of pred though. It'll wreck your body. Staying away from foods that are high in Tyramine should reduce your frequency of attacks. Tyramine is a natural inflamatory and is present at some level in nearly every food. It's a byproduct of fermentation and aged foods breaking down. No fermented cheese, preserved meats or old fruits and vegetables. J This is great info. Thank you for responding to me. It actually took me a long time to get my general to even let me see a neurologist. I don't like the Verapamil as I have such low energy and find it hard to want to work out etc. I did buy a arm strap blood pressure monitor to check my levels and have a stupid watch that goes off from time to time when the ticker slacks off (that's usually when I start feeling really tired). I am trying to taper off it on my own. I've always been sorta a health nut so I've never put an energy drink in my body but guess if I'm putting junk made up of who the hell knows what that slows my heart down there cant be much harm in trying an energy drink. Strange to hear Prednisolone (I give that to my cat for autoimmune) but hey! Plus who the heck trusts Big Pharma these days... Thank you!!!! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted August 14, 2021 Share Posted August 14, 2021 Glad to see you're getting such good advice on here Bosco. I'm going to agree with and comment further on a few of the recommendations: Yep, pred can indeed supply a couple weeks break, but one more thing to watch out for with it is that some of us find the CH can then come back with a vengeance. What looked like a D3 auto-response that you received may have actually been a personal response from the world's top expert on D3 regimen for clusters, if it came from "XXX". It is my impression that the CH'ers most successful at suppressing it, and often shutting it down for long periods of time - like years on end - have mostly abandoned the pharma for the very effective busting, etc. An energy shot will have that much less junk to consume in it than an energy drink. Topomax is pretty much universally reviled among those who have been on it, precisely for the cognitive hit you noted, not to mention its general ineffectiveness 2 Quote Link to comment Share on other sites More sharing options...
spiny Posted August 14, 2021 Share Posted August 14, 2021 You can down a V8 Energy Drink or regular coffee too. Both work for me thankfully as the Energy drinks ans shots are so revolting that my tummy says 'Oh hell no!' and immediately rejects them! 3 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted August 14, 2021 Author Share Posted August 14, 2021 17 hours ago, Bejeeber said: Glad to see you're getting such good advice on here Bosco. I'm going to agree with and comment further on a few of the recommendations: Yep, pred can indeed supply a couple weeks break, but one more thing to watch out for with it is that some of us find the CH can then come back with a vengeance. What looked like a D3 auto-response that you received may have actually been a personal response from the world's top expert on D3 regimen for clusters, if it came from "XXX". It is my impression that the CH'ers most successful at suppressing it, and often shutting it down for long periods of time - like years on end - have mostly abandoned the pharma for the very effective busting, etc. An energy shot will have that much less junk to consume in it than an energy drink. Topomax is pretty much universally reviled among those who have been on it, precisely for the cognitive hit you noted, not to mention its general ineffectiveness Thank you for the response and yes I am pretty happy about all the advise I have received as well. Strange to see how universal the pred is as I give that to my cat for an autoimmune issue he has and and yes I hate the Topomax and I don't really think it help anyhow... I will try the energy shot as well as the higher levels of D3. Just need to pull the instructions on the dosing. Thank you! Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted August 14, 2021 Author Share Posted August 14, 2021 7 hours ago, spiny said: You can down a V8 Energy Drink or regular coffee too. Both work for me thankfully as the Energy drinks ans shots are so revolting that my tummy says 'Oh hell no!' and immediately rejects them! 7 hours ago, spiny said: You can down a V8 Energy Drink or regular coffee too. Both work for me thankfully as the Energy drinks ans shots are so revolting that my tummy says 'Oh hell no!' and immediately rejects them! I am a black coffee kinda chick so maybe ill just stick to that:) Thank you! 2 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted August 24, 2021 Share Posted August 24, 2021 Hi I'm new myself on this site , but i agree with That hurt my head the amount of varapamil your on is not good i was only on 280 mil a day and it gave me heart block . Not a good med to be on Quote Link to comment Share on other sites More sharing options...
jon019 Posted August 25, 2021 Share Posted August 25, 2021 (edited) 10 hours ago, Shaun brearley said: Hi I'm new myself on this site , but i agree with That hurt my head the amount of varapamil your on is not good i was only on 280 mil a day and it gave me heart block . Not a good med to be on .....different strokes for different folks.....aint no absolutes in clusterville.... .....for about 7 yrs verapamil was a relatively successful med for me....manageable side effects and knocked out about 70% of hits and seemed to make hits lesser in intensity. 5-6 cycles per yr so a prevent was critical. nothing less than 480 mg/dy worked (had to be IR)....would go to 1000+ in high cycle. heart function monitoring essential, and extra fiber/water to keep things moving along. a serious med for sure....for a serious condition. eventually got tired of the constant fatigue and being med reliant and dialed in OXYGEN/energy drinks, D3, w/Zomig for breakthroughs (rarely) for my ultimate management....w/chemo, age, and other life changes being additional factors i wonder about... .....i'd do it again if i didn't know now what i didn't know then, or what's a Clusterbusters for? but, the alternative options presented here are not always possible, practical, or suitable for all...as far as i'm concerned, verapamil is an effective prevent for a good number of folk, and remains a valid tool in the ammo belt... best jonathan Edited August 25, 2021 by jon019 4 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted August 25, 2021 Author Share Posted August 25, 2021 On 8/24/2021 at 12:52 PM, Shaun brearley said: Hi I'm new myself on this site , but i agree with That hurt my head the amount of varapamil your on is not good i was only on 280 mil a day and it gave me heart block . Not a good med to be on I agree and have started to taper down. I just received all the products to start the D3 Reg and am now down to 480 and hopefully will be able to decrease even more. Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted August 27, 2021 Share Posted August 27, 2021 I've got to be fair I've not given the D3 a go yet as im in the middle of a shit cycle so im giving busting a go . Good luck with the D3 hope you get success Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted August 28, 2021 Author Share Posted August 28, 2021 On 8/24/2021 at 7:13 PM, jon019 said: .....different strokes for different folks.....aint no absolutes in clusterville.... .....for about 7 yrs verapamil was a relatively successful med for me....manageable side effects and knocked out about 70% of hits and seemed to make hits lesser in intensity. 5-6 cycles per yr so a prevent was critical. nothing less than 480 mg/dy worked (had to be IR)....would go to 1000+ in high cycle. heart function monitoring essential, and extra fiber/water to keep things moving along. a serious med for sure....for a serious condition. eventually got tired of the constant fatigue and being med reliant and dialed in OXYGEN/energy drinks, D3, w/Zomig for breakthroughs (rarely) for my ultimate management....w/chemo, age, and other life changes being additional factors i wonder about... .....i'd do it again if i didn't know now what i didn't know then, or what's a Clusterbusters for? but, the alternative options presented here are not always possible, practical, or suitable for all...as far as i'm concerned, verapamil is an effective prevent for a good number of folk, and remains a valid tool in the ammo belt... best jonathan Uff.. This one made my eyes sweat a bit. Just sweat mind you! I have managed to drop down to 480 on the verap after starting the D3 reg introduced to me by some saint on here. (I had started having heart palpitations at 600) so I was happy to decrease and hasn't happened since. I just got done with a quick load D3 and things are a bit odd as I'm having spikes every day but they are so much more manageable (like you can ignore them and not rush for meds). I am now on the taper down and have a blood test kit coming to get labs to see if I reached the correct initial dosing. I only had 2 spikes today so (good day so far) trying to take things in stride and learn from folks that have not offed themselves having this much longer than me. We have a huge fire here in Unicorn land (CA) That is now only idk 7 or 8% contained and smells like I'm having a bonfire in the back yard I am assuming something is going rt with the D3 as I've only woke up screaming once this month (my worst month as far as I know).. 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted August 28, 2021 Author Share Posted August 28, 2021 18 hours ago, Shaun brearley said: I've got to be fair I've not given the D3 a go yet as im in the middle of a shit cycle so im giving busting a go . Good luck with the D3 hope you get success Good luck! I only wish you the best!! Quote Link to comment Share on other sites More sharing options...
Chronic2017 Posted August 28, 2021 Share Posted August 28, 2021 BoscoPiko, you may want to look at this thread: Quote Link to comment Share on other sites More sharing options...
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