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Posts posted by FunTimes

  1. 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! 

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  2. 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. 

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  3. 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. 

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  4. 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. 

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  5. 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


    This one will work on the M and M60 tanks


    The mask can be found here


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  6. 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!

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  7. 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. 

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  8. 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..

  9. 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. 

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  10. 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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  11. 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.   

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  12. 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. 

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  13. 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. 

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