FunTimes

Also chronic here and had both shots 1 and 2 with no ill effect on the clusters. Still got em every day like clockwork! No more no less.

All spot on advice above from the top members on this board. I would put money on them knowing more about clusters then just about any doc you will find. I have taken Verapamil up over 900mg a day, taken triptan shots like they were going out of style, taken prednizone had a hip replacement and all kinds of other fun things. Busting Oxygen and the vitamin D3 have been just about the only thing that have kept me around. I am chronic and it is not as bad as you would think. I never have to sit and wonder when my next cycle will hit. Stock up on as many oxygen tanks as you can and hitting them as fast as you can are key to having it work. Your husband will need to play around with his breathing techniques to have it work best for him, as soon as he has it figured out it will all change and he will need to change it up a little, That is just the way clusters are for most. I will attach links to some oxygen supplies you will want to look into. I start my o2 flow rate out at 25lpm and bring it down as I go so maybe he needs a little more then the 15lpm regulator is giving him. I doubt the mask is equipped with a bag large enough to hold the amount of air he will need to abort the attack as it should. Depending on the tank size you have you will need one of 2 different regulator. Most like to use E tanks to keep with them at work, in the car and take with them when going out. Larger M and M60 tanks are good to keep at home is a place you can get to them fast. keep looking around on this site and ask questions, it has saved many of us a lot of time and energy, you are not alone. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

So far it has been 5 days. Clusters are about the same as they were last week I cut it from 120 twice a day down to just one in the morning. Gonna keep going like this another week and see how things are. Weather around here is a little funky this time of year so that is not going to help give me a good read on it but we will see. Thanks for askin!

Number 1 is the O2. Along with that are the D3 and busting that Bejeeber mentioned. You can also down a 5hr drink, strong coffee or any other energy type drink with a lot of taurine and caffeine in it when you first feel a cluster hitting. You can try some Ginger candy tea or just chew on a piece of fresh stuff from the market. Welcome back to the site, poke around and reacquaint yourself with all the information and you will be just fine. We are all still hanging around to help each other out.

This might help with regulators This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

I am going to think about this over the weekend and most likely start cutting back Monday. I am sure it will be a blast but screw it, it's not like I have not hade a cluster before..

I have been on Verapamil for about 7 years or so at one point taking up to 980mg a day. It did cut down on the amount of clusters I was getting but did not take them away for any great mount of time and I was tired of the side effects so I started to cut it back. worked my way down over time to 240mg a day and did not notice that much of a change, as soon as I went down to 120mg a day I started getting hit hard so jumped back up to 240 a day. I take 120mg at the start of my day and one at the end and they are immediate release. I am also on the D3, use oxygen, 5hr drinks and all that good stuff. I am also one who likes to stop taking whatever treatments I am on just to see if the clusters jump so I know if it is helping or not. I am chronic so I will still get hit every day either way but I was wondering if I just need to wait it out and let my system adjust to not taking the verap. I am tired of taking it every day and feel that it is just making me tired all the time especially in the lower legs and feet. I am not to worried about getting my ass handed to me for a few days if I know in the long run that it will calm down and get back to my normal 2 or 3 hits a day. I know that nobody can really answer this question and the only way to know for sure is to just drop down to 120 for a week or so and then stop taking it all together. I was just wondering if anyone has tapered off verapamil and how it effected them short term vs long term. I am not a big triptan user but I do have a nice stash of it just incase I need a shot on them one off kip 10's. I am fully aware of the busting routine as well but I have never had it kill the clusters for more then a few days.

Celtic you will want to take all the other vitamins along with the D3. Here is a link and you can always reach out to Batch (XXX) on this site, he is the one who invented this regimen https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people

At the onset of covid I was having issues with size and amounts of tanks that were being delivered to me. I would ask for an M or M60 and I would get E tanks. I have from the start of using oxygen ordered an extra tanks, order 4 tanks and only give back 3 empties, this has gotten me a nice stash of extras that I can keep all over the place. It may not be the right thing to do but with the amount of issues I had just to get oxygen to begin with I don't really care. You gotta get on the good side of the delivery person and start building a stash of extras for when this sort of thing happens. I am scared that one day I will be told that my oxygen company just does not want to deal with me anymore and cuts me off so I have enough extra tanks to last me at least a month. This will get me some time to find another company.

You can also try adding Benadryl 3 times a day and 2 at bed time. I would also down a 5hr drink at the start of the O2 to give it a little boost. Some days just suck, I had one the other day for no reason other then I needed to be reminded of how much fun clusters can be!

I also will get the "spike" type shooting pain from time to time but I just chalk it up to the clusters playing games. I just move on with my day as planned I do not change my program because of it. When I am most carful is with that pressure feeling in my cluster area, kind of a dull normal headache feeling that I know will blow up at any moment. the fact that you have only felt that spike feeling and it haas not developed into a full blown cluster would lead me to think the D3 is working, I don't know that you have screwed it up in any way you just might need to tweak it a bit for better results. Getting your blood work done will be the only way to figure that out. Oxygen as a preventative.. I will sometimes use it before going to bed or when I have them days of pressure feelings but I dont think it does anything other then ease my mind a bit if that makes any sense? And your feelings of the spikes on the left side can be the clusters changing side, that has been know to happen to others in the community but it could also be another form of headache. I am not sure but it may be something you want to bounce off your doc and if they get bad I would have an MRI or something done to make sure its only clusters and nothing else.

@Ganuchi I am from the only Delco that counts! haha Yes we are neighbors.

Look into RC seeds (Rivera Corymbosa seeds). They can do the trick and no tripping for most. You can order them online and have them in a few days, Grind them up in a pepper mill, soak them in some spring water for about an hour then drink them down. They can work just as well as MM sometimes with less mind altering effects. You can read all about them on this site by putting RC seeds in the search bar at the top of the page. I guess your doctor forgot to give you the jerk free pass card when they told ya you have clusters.. I got 2 of them and a card allowing me to be an ass twice a week.

Happens to most of us if not all. I feel mean, sad angry and I lash out at people all the time. My wife will sometimes remind me that im being an ass and kind of bring it to my attention but she understands why I am this way. As far as staying happy? I just kind of think about the ones I love and I am thankful that this is all happening to me and not them. I can deal with this my own way but if someone else had clusters then I would be one of the ones who just didn't get it. I know it will pass in a few days or weeks and I will feel better again. I am chronic so I have forgotten what it is like to be pain free for more than a day but I do have days that are better then others and I try to enjoy them. Depending no your location you may be picking up some sort of allergy from being out with your horses. you might want to look into the vitamin D3 by our member here know as XXX. I am sorry if you posted about this already and I missed it but how else are you dealing with your clusters? Coming on this site and venting about how your feeling is huge! people here understand and will help you figure it out.

This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

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!

The Vitamin d regimen is a hand full of different vitamins taken daily to raise you Vitamin D levels in your system to reduce or eliminate cluster headaches and also has other health benefits. It was created by a member on this site Batch who now goes by the name XXX. If you type vitamin D in the search bar you will find all kinds of post with people who are using this to fight clusters. Here is also a link that will take you to information about it. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people XXX is on this site just about every day and is so helpful to everyone. If you do want to give this a try and have any questions I am sure he would answer them for you.

Having the home oxygen is a huge plus. Make sure your using it correctly up around 20 lps with a non rebreather mask. Be careful with the sumatriptan injections you may be causing yourself more headaches if you are using them a lot. You can look on this site how to split them and maybe cut back on the amount your using. Look into the vitamin D3 that alone can hep some get pain free. Energy drinks like a 5hr can also help at the onset of the cluster to give the oxygen a head start. Click on the blue banner above for a rundown on what this site is about, you will find a tun of information here and everyone iw here to help each other out. Poke around and ask questions.

agreed with the the above 2. getting the O2 is the hard part, tak e the regulator and mask they give you smile and put it in the closet. Get your own! This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit if they are delivering to you then get to know the delivery person and start figuring out how to get extra tanks to stash away for them weekends that just blow your head up! I have been very lucky with my O2 place the last few years but knowing that it wont always be this good I would try to get at least one extra tank out of them a month. Well I have a nice stash of full tanks now and thank god I do. A few months back I was starting to have issues with them charging me 68 bucks per E tank and then told me I was not even covered to get them anymore. Long story short, I have to call them every week and fight on the phone with them for an hour to have the charges reversed. Drivers delivering the tanks do not care and if you treat them nice will do whatever they can to help you out. My place does a crap job tracking tanks so I am lucky, I hope the same for you.

Ganuchi, I don't know if it would be the same thing as I have not had the pleasures of covid. I do know that when I am exhausted and my sleep schedule is all messed up from the norm that I will get hit more often and harder then normal. This last a few days until I can get back on my normal schedule. Stick with the o2 and caffeine! I carry 5hr drinks around with me they are small and have just enough of what I need to help bead the cluster down until I can get on the oxygen, and if the oxygen is not working as fast as I want or need it to I will also down one to give it a little boost.

Seems like your moving in the rite direction. I would spend some time reading up on the oxygen. I know I need to change my technique from time to time to have it work better for me. I will also down a 5hr energy drink at the start of it to help give it a kick start. I do this any time of day or night, it does not keep me awake for them 3am hits. You will also want to stay on the O2 for a few minutes after the cluster goes away. As far as getting your tanks, you will need to call around and fight for what you want. Don't worry aboutt he regulator they give you because its not going to be what you need and you will just end up ordering your own. Get the tanks any way you can and stock up on them. You may be better off paying out of pocket for them, it might cost you less then insurance deductibles

jfrillin That does suck and I do whatever I can to stay away from the ER. only made one worthless trip and said never again for the same reason you have now. Not sure of your past but maybe re evaluate your tools. D3 has had a few updates to it over the years and maybe some of them can help you out. I also have tried the Emgality and it seemed to work the first month but did little at all the few following months. Sometimes I get lazy with my oxygen breathing technique and my wife needs to point it out that im doing something different to get me back on trac. I also down a 5hr energy drink to help the O2 out when things are bad. Ice packs are either a help or a diversion of how im thinking and also serve as a little cushion of me hitting my head with my fist. Suicidal thoughts I feel come with the territory and most of the time leave with the cluster attack but definitely not something to overlook. Ginger tea helps some with shadows or the inbetween pain and groggy feeling. Dealing with this with 2 family members for so long I am sure you do not want to hear this but I find myself in need of a reminder of what did and did not work in the past and tweaking everything a little sometimes helps me get out of a funk. I am chronic so I do it every day all year round and believe me I know how he feels now. when your sleep gets interrupted even for one night that can have a big snowball effect let alone a week of hits waking you up. Best of luck and please just take this as advice that I know you already know about not that I think your doing anything wrong. And thank you for all of your support. I could not imagine what it would be like to be in your position.

I was not the best in school the first time around but I think I could pull this one off! Think they will give scholarships to people like us who have a little experience?

I had both shots done and no change in my clusters at all. Pfizer is the one I had if that makes any difference.

Welcome Paula, What other things have you and your husband tried for his cluster? Any preventatives? Verapamil is the most frequently used at a high dose. You should read up on the D3 regiment, that should slow the hits down and lessen the pain but can take a few days to kick in. Oxygen is the best for aborting clusters with no side effects. If your doctor will not prescribe it for you we have a tun of information about home setups using welding oxygen. That should be the thing you try to get set up today! I will also down a 5hr energy drink when I feel a cluster coming on to help the oxygen work a little faster and I can even drink them at 3am without them keeping me awake. Poke around on this site for a few hours and ask a lot of questions and we can help get things under control for the both of you. Good luck and welcome to the club.