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FunTimes

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Everything posted by FunTimes

  1. Just for shits and giggles it would be great to find a man to go in and see this doc with all the same symptoms exactly as you described and see what that outcome would be. Compare notes and present them to this doc. Not that that would be possible and I am sure someone would have an explanation for the different between the male and female treatments, it would just be nice to shove it up this guys arse.
  2. Annette Tell them you are going to pay out of pocket and I bet you the price will drop and you get a better deal. You just need someone on the other end of the phone that is willing to work with you. I think mine went down something like 200 bucks a month by paying out of pocket. Things have changed alot in the last 2 years and it is a constant fight with my oxygen company but stay on them and they will most likely give in to you. Last time I had to call I was told due to the oxygen tank shortage they are saving it for people who really need it, I told that to say that again and listen to the words coming out of her mouth. I had my 3 tanks delivered the next day. I am no longer allowed to get the smalled E tanks so they now only bring me larger M and M60 tanks. Makes no sense but more o2 for me so F them!
  3. What other medications are you taking? How else do you manage your clusters? You want to look into getting oxygen now it will change and save your life. You can abort a cluster in as little as 5 minutes with the correct setup
  4. OXYGEN. Read all about it here and get it as soon as you can.
  5. Thanks for the links Juss. I did start this study last week but have not seen any huge change in my clusters just yet.
  6. As far as the oxygen and insurance goes I pay for it out of pocket and it is actually cheaper then if insurance covered it. Yes it does not help my deductible but oh well. You have the script I would start calling around and set it up as soon as you can. Tell them your paying out of pocket and work a deal up. Take what they give you, the tanks are all you will most likely get from them that will be of any use. The regulator you will buy on your own and also the mask. To hold you over you can use 5hr type energy drinks to help slow down and sometimes kill off a hit if you get it early enough. Hot water foot bath with ice pack on your cluster side of your head, Hyperventilate breathing tech, vigorous activity. People try all kinds of things and sometimes they work and sometimes not but it gives you some hope!. Stick with it and you will find help, This site if full of helpful people that have goin through it all just like you are now. Kind of sucks but this is the place all the cool kids hang out and help each other. Here are a few links to the O2 supplies you will want to look into getting if you do get some tanks. Also use the search bar up top and look up welding oxygen. Ask tuns of questions and someone will help. 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
  7. Another migraine med that they are trying out with a trial for chronic clusters in my area. Anyone try it or hear anything about it?
  8. @Dallas Denny How are you feeling? Any better news from the doc this week? Also Happy Birthday to an old tough Marine yesterday and happy Veratrin day to you today! Hope all is well
  9. Best of luck to ya Denny, It will all be fine in the end im sure.
  10. Have a safe trip Freud. I might take you up on that phone call!
  11. Being CHH does suck but like Jon said it is more like high and low cycles within it. I am stuck in a higher cycle at the moment and it really blows. Going through 02 tanks like they are goin out of style and due to some sort of oxygen shortage in this area I was just limited to what I can get refilled so a little added pressure and panic is starting to set in. Sticking with 02, 5hr drinks and Frankincense oil on the roof of my mouth and hopping that this ends soon. On the up side I do not have to sit around dreading any certain moth or time of year when the hits are going to start coming. I have the joy of knowing I am going to get hit in the side of the head with a brick every day!
  12. FunTimes

    Eye pain

    My cluster eye always has issues but that is because I am always rubbing it, pressing an ice pack to it or digging my thumb into it. My wife will ask me if everything is ok with it sometime because it is a little swollen or red but I think that is just the way it is going to be until I stop abusing the hell out of it.
  13. Memory loss? ?? oh crap, I forgot what I was gonna say. Im with ya on that one
  14. I dont know about changing the times of attacks but I have just kept myself awake all night because I would get hit less then when I fell asleep. I don think that is what your looking for but its all I have for ya.
  15. I got nothin to add my friend but you know how to get a hold of me if you need anything. I hope like me your just in a temporary low point and you will bounce out of it soon. This shit is not really that fun and we all know how you feel. Answers are hard to come by but you know as well as anyone that you just gotta think out of the box sometimes cross your fingers and eat some crap that you think will help enough to get you through the day.
  16. experiment is over, back on 240 verapamil a day. I made it 12 days before getting hit hard so i chickened out. oh well
  17. 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.
  18. 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
  19. 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!
  20. 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.
  21. 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
  22. 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..
  23. 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.
  24. 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
  25. 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.
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