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FunTimes

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Posts posted by FunTimes

  1. 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.

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    • Thanks 1
  2. Like the others have said, I don't think it would lengthen your cycle but it may add a hit to your day. I have had days that I just can not stay awake any longer and took a nap, the short ones like you said about 29-30 minutes are ok most of the time but do not hold you over when your only sleeping 2-3 hours a night. I find that the lack of sleep is also a trigger so I will sometimes take a day off of work or waste a weekend day and try to sleep all day waking up every 90 minutes or so dealing with the cluster and laying back down. After a day of this I seem to get back on track with my normal clusters. 

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  3. unfortunately I have that same urge to just hang out and have a few beers with friends and family myself. A few years back I tried it and it lasted about an hour, then I was on the o2, 5 hr drinks and ultimately imitrex injection to stop most of the pain about an hour into the hit. It was much worse. I am chronic so no off season for me. I have tried wine with the same outcome. Brown whiskey is a little better and I can sometimes pull that off with a little hit or nothing at all but I can also get crushed. Clear drinks like vodka are just a tad better but still make me nervous so I kind of tend to stick to coffee.  

    If I just try to drink myself through the cluster to the point that I pass out drunk I sometimes will have 3 days of pain free time. Not recommended to do this weekly but I have a few times that I just didnt care.

    I also have found that if I am self medicating that I can have a few drinks and hang out like the good old days. I have had a few beers as I was tripping and did not get a hit during the trip, on come down I sometimes have gotten hit but it is no more painful then the daily hits I get so well worth it for me. I dont do it often but it is nice for something like new years evening. 

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  4. This is interesting. I will put a little piece of paper towel or tissue with Frankincense oil on it and press it to the roof of my mouth for about 3 minutes to help abort an attack. Used like a 5hr energy drink along with the oxygen and it does seem to help me. My wife found out about this on some essential oil website a few years ago. 

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  5. Welcome tot the club, glad you found us and we are all here to help as you can see. 

    The first think I would say is get your hands on Oxygen, you can and may have read all about it on this site. Vitamin D3 is another thing you can get started today with one trip to a local vitamin shop, walmart or rite aid type store. 5hr type energy drinks can slow the onset of an attack, putting your feet in a hot water bath, ice pack on the cluster side are all tricks people use to help slow or stop the pain. 

    Read up on the site for an hour and you will have a ton of information that may be helpful to you. As a tun of questions and someone will be sure to answer  

  6. I have taken Emgality along with MM and did not notice any change in the effectiveness with MM. As far as I know they work within you body on 2 different levels and should not interfere with eachother. I gave the Emgality about 4 months and called it quits as it did not help me out. I would say give it a try along with your other normal routine and hope for the best. Make sure you are getting the full dose for clusters, 3x the migraine dose. You will need to use 3 100mg needles and make sure they are room temp! I did not wait long enough after taking them out of the fridge one time and they hurt like hell when I injected them.  

  7. Clustergm

    I was thinking about going to the Keys for a few weeks and this is a place I found that would rent me tanks. They have a few locations but I don't know if they would deliver up that far. Give them a call, maybe they can help you out. The first tank would cost me $25 and $15 for each additional tank. They only offered me E and D size but may have other options for residential delivery contracts. 

    Medical Care Services Florida Keys

    91884 Overseas Hwy, Tavernier, FL 33070

    Phone: (305) 501-2306

    https://www.mcskeys.com/

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  8. Clustergm

    I would not let insurance hold you back from getting oxygen. I was given a price from my company with using insurance and then asked the cost out of pocket. MUCH less paying out of pocket for me so that is what I do. you can also look at the welding link CHfather has sent to you. looks like the boost cans go for about $2.50 each, i would think 8 to 10 cans might abort your cluster if you can somehow contain the O2 in some sort of trash bag setup.   At 20 to 25 bucks you can get a much larger welding tank that could last you days of fun filled aborts. 

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  9. This is my second trip up for this study. I would think the travel expenses are what would be holding back the enrolment. Also most of us that already use MM for our own treatment have nothing to gain from this other then stopping home treatments, getting back to baseline hell then crossing your fingers on what you get from the study. I like to torture  myself from time to time so I figured why not try this again. No other vacations planned with this pandemic so sitting in a hotel room for 2 weeks cant be that bad. Give me new walls to stare at. 

    In all reality I do sign up for studies whenever I can just to help get the science figured out by the smart people, It would kill me if one of my kids ever had to deal with this with nothing in the pipeline to ease the pain for them. 

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  10. Correct! a lot of people have hade great success with using the D3 regimen. For some it have stopped clusters all together others like myself it has cut down the amount of hits per day and the severity of each attack. You will need to get your bloodwork done to kind out what your levels are and make some adjustments but it is worth giving a try. XXX Formally known as Batch on this site, is available to help you out with any questions about this. 

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  11. @Snowflake you should be able to PM him here by clicking the little envelope icon at the top of the page by your name. He now goes by XXX on this site. He does a lot of one on one with other members on this site so it may take him a little time to get back to you but I don't think it will be more then a day or so. He is also very good with exchanging phone numbers with users and you may be able to speak to him over the phone.  Batch is a great guy willing to help out anyone who are willing to help themselves. 

  12. Welcome Dave, This site is full of info that may help you out with figuring this out. A little more info on your headaches, Are they the same time of day every day? Do they run in a cycle, Spring, Fall, of only on a certain month and only x number of weeks? Does alcohol bring them on? things like that will help figure out if they are for sure clusters or not. Like Jon said above Oxygen is something you will want to get as soon as you can if you do have clusters. You will want it in a tank not a concentrator machine  and you will want a high flow regulator and a cluster mask to get the full benefits from it. You get the tanks and take whatever regulators and masks the company gives you and toss them in the closet, we will help you get the correct things for your setup after that. The redbull and 5hr drinks are great for me as well. I like the 5hr drinks because of the size, I can also drink them any time of day with not effect on my sleeping. I think the magic in them is the Taurine/Caffeine combo. The vitamin D3 your taking could also make a world of difference for you and the member XXX is sure to be able to answer any questions you may have on that. 

    How do you make the headaches go away forever? Well if you can answer that I don't think you would ever buy another drink or dinner again.

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  13. Like CHfather said. It did not work out well for me. The first set of shots did cut my clusters in half for that month. the following few months they went back up to normal. I think that first month was just a fluke and my head was going to give me a little break either way. But if you can get it for nothing with a savings card no harm in giving it a try!

    https://www.emgality.com/savings?utm_source=google&utm_medium=ppc&campaign=6506846301&adgroup=79794805364&ad=461349574792&utm_keyword=kwd-531753716301&utm_id=go_cmp-6506846301_adg-79794805364_ad-461349574792_kwd-531753716301_dev-c_ext-61552973760_prd-&gclid=Cj0KCQiAw_H-BRD-ARIsALQE_2NeDuXvHiL1zNpu4E3B0p7pCO-Ds1kHGn3Y59eW5j42gKw55-jGAnYaAunXEALw_wcB

    You will most likely get 3 100mg shots to take every 28 to 30 days. You will need 300mg not 100 like migraine  

  14. It does suck.. Welcome to the club! Like yourself we have all gone through this same type thing. You will find people that have had teeth pulled, nerves cut, tried all sorts of different medications and a few operations done to try to solve this.  You will want to read up as much as you can here starting with the link that CHfater sent you, get oxygen as soon as you can to abort your attacks try a 5hr energy drink at the first feeling of an attack coming on can help buy some time and sometimes abort the attack on its own. read up on busting and the Vitamin D3. Oxygen is the best treatment for aborting if it is done correctly. We can help you get the needed supplies for that even if insurance will not cover it. I pay for it out of pocked because my insurance stinks and it would cost more if they paid for it. 

    The D3 you can do all year round and can either eliminate them all together or lessen the frequency and intensity of the pain. Some will add benadryl to the list of vitamins during season changes to help with any underlying allergies that they might not even know they have. 

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  15. I will also stretch my neck out from side to side sometimes rubbing a ice pack on it. I don't know if it is just a distraction that I needed to cause relief or if it actually help, I don't care either way as long as the pain goes away! haha

    As far as the toothache goes, The way it was explained to me if your tooth had an issue you would feel that pain or pressure all day every day until it was taken care of, if it comes and goes most times like clock work the same times every day then it is cluster. 

    But I am no doctor, I am just some guy having to much fun playing the cluster game.

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  16. @Cast Iron, I was in the same boat at one point a few years ago. I finally figured I had nothing to lose and I spend a weekend locked in my room with no triptans and beat the shit out of myself all weekend. It was hell but I think it helped me in the long run. I now bust, do the D3 and have oxygen that I hit as soon as I feel that lovely sensation of a cluster coming on. I also always have a 5hr energy drink in my pocket to help the oxygen along and take a low dose of Verapamil. I was taking 2 and 3 triptan injectables a day and eating sumatriptan pills in between. I truly feel that all that was making my life worse.  Triptans do work and I feel they have a time and place to be used very effectively but I was clearly causing more headaches by using them that often. It is not easy to do and like anything else that makes you feel better you just want to hit it just this one time but if you can hold off for just a few days I think you will start to feel better. I am chronic so I do not go any length of time pain free but I am now down to about 2 clusters a day on average. I do get the occasional pain free day but not very often.   I know it all just sucks but with this site you will be able to find a way to make it to the other side of this cycle you are now stuck in.

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  17. Dogo, I have the same type feeling in my upper jaw almost every hit. I actually started all this fun thinking I had a toothache and had root canal work done on a tooth that did not need it only to find out from the next dentist that I had clusters. 

  18. I have found the prednisone will only help you when you are taking it, you stop taking is and clusters are back. That is given to bridge the gap when starting a new med like verapamil, it gives it the time needed to build in your system. But hey if it gets you a few days pain free and you have no issues taking it rock on.. I would do the same.  Oxygen will be your best option to abort any attacks you get and the 5hr drinks can help that along if you get a stubborn one. I have tried the melatonin but have not come up with any set in stone results. The D3 did make a difference for me in the intensity and frequency of my attacks. 

    We are all in the same boat here but everyone is a little different in the way we react to treatments so don't give up on any one thing because it is not working sometimes you will need to tweak it just a little for better results. Breathing technique that worked for you today may not work tomorrow so just be ready to change things up a little from time to time.  

    How are you making out getting a better price on the oxygen? if you are ok with sharing your general location others in your area may be able to give you companies they had luck with people from all over the globe stop by here to help each other out. 

  19. I use the small 5hr energy drinks or coffee type energy drinks if that is all I have. I can use them all times of day and night and they do not keep me awake. I run my oxygen reg at 25 lpm at first and dial it back as I get the cluster under control. If I catch it fast enough with the O2 I do not tend to need the 5hr drink and can sometimes abort in about 5 minutes. the longer it takes me to get on the oxygen the longer the abort takes. I will also add benadryl to the D3 regimen when things get bad for me you can read all about that on this site and XXX(Batch) will be more then happy to help you along with that. Some have help off cycles all together just by taking vitamins. Holding a ice pack on my cluster side also helps me, I don't know if it just distracts me from the pain or really does something but if it works I will try it

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  20. Here is the info to help you with the regulator and mask

    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

     

    As far as getting it covered by insurance, I have the issue of it costing way to much with insurance so I called around and told the oxygen companies that I will be paying out of pocket. It seems as if the insurance company actually sets the pricing and when I pay out of pocket the price is about half. I lucked out and have a company that will deliver the tanks to my house. I call in what I need and they come the next day. I am also chronic so I get this done all year round so I am not sure how that would work if I did not call in a order for 6 months of so. 

    I recommend calling as many companies as you can and tell them your paying out of pocket. Your other option is the welding route. You can read up on this on the site as well and get all the help you will need for that setup.  

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  21. Not much to add to all the post above. My wife will kind of be on standby in the background. check on my when she knows I am having a cluster just by walking by, if I raise my hand of make any type of movement in her direction she knows I need or want something. She has a idea of things I might want during a cluster and will just go through the list until I give a thumbs up or nod my head. It is very strange for both parties I guess. For me I don't want to disrupt anyone else life with my condition but at the same time I don't want to be alone. My wife does not want to bother me by sitting in a chair looking at me the whole time abut does not want to leave me all alone incase I needed something. It is a tight line we all walk on and you will just need to find a way to compromise and let it all go. Kind of like you said freeness of death goes away with the pain try to let everything associated with the cluster go away with the pain. Do not hold a grudge towards anyone trying to help in regards to how they reacted to your headache, if you didnt like it just explain how to make it better next time. 

    Like Jon mentioned if you can not get that 02 script take up welding and give the 5hr energy drinks a try they work great for me.

    Best of luck to you and your family,

    • Like 4
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