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ClusterBusters

FunTimes

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Everything posted by FunTimes

  1. FunTimes

    My insurance doesn't cover oxygen - any tips?

    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.
  2. FunTimes

    My insurance doesn't cover oxygen - any tips?

    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
  3. FunTimes

    My insurance doesn't cover oxygen - any tips?

    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.
  4. 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,
  5. Nice work Batch, I assume the participants need to stop taking all vitamins prior to the study, How long do you think that would take to clear your system?
  6. FunTimes

    Flu Shot?

    I have gotten the Flu shot in the past and have not noticed any change in headache frequency.
  7. FunTimes

    Cluster head mask with bag

    The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  8. FunTimes

    Emigality

    What is your current dose? It should be 300mg a month for clusters. I had 3 100mg shots when I was on it. I now have 3 unneeded sitting in a bag in my fridge. It did not help for me.
  9. FunTimes

    IMPORTANT CMS O2 SURVEY!!

    I did it on a PC with Chrome browser but I do not see my response posted on the form. It looked like everything worked fine on my end, I thought maybe it took a day to post.
  10. FunTimes

    Question about D3 + other

    Verapamil can help some. I was at one point taking a little over 900 mg a day with the slow release. I made the change over to the rapid release and worked my way down to 120 twice a day. You will want to have a doc keep an eye on your heart when changing dose and work up slowly. It will take about a week to get into your system so most will do a pred taper for the first week. When I was on the higher dose it effected the feeling in my feet along with a little swelling. If you are also using the D3 with all co factors you will want to space them apart a few hours, Verap is a calcium channel blocker so they would be fighting each other. They both work fine along with the triptans also.
  11. FunTimes

    My sister, I"m helpless

    Sorry you and your sister are dealing with this but you are in a good place for help. I see you have done all the ct, mri type scans to rule out anything else and that is a good start. The oxygen is the number one abort by most for cluster attacks. You will want the cluster mask and a regulator that has a flow rate that will go up to 15 or 20 lpm. you can read all about this. energy drinks or strong coffee are also used to help at the onset of an attack to help slow the ramp up time so you can get to the oxygen. Read up on the vitamine D3 regimen developed by a member on thie that goes by the name of XXX also known as Batch. Does she or has she tried Verapamil Sumatriptan or any other medications for this? Please read up as much as you can and ask a tun of questions you will get better help on this site then you will in any doctors office.
  12. FunTimes

    Post Attack Symptoms

    Definitely drained and in a fog for about 10 minutes or so and my eye will continue to tear up from time to time. Then I sit and think of what mean thing I have done to someone or something in the past that warranted that hit.
  13. FunTimes

    Fall is coming

    igdc I keep a log book of every cluster I get with how long and what I did to abort each one. It does help me because things change and what is working today may not work for me next week. I can go back and see what I did to get out of a funk the last time. I am chronic so I do not have any cycles that give me any length of pain free days but I do have cycles that ramp up from time to time. Spring time usually beats me up followed by summer when it is hot out around here.
  14. FunTimes

    Support Group

    Sign me up! do you want my social security number and mothers maiden or will the name of my first dog due? I am sorry, that is not nice but this does seem a little shady to come out of the gate requesting zoom or other video platforms that are easy to exploit. Poke around and tell us a little about yourself
  15. FunTimes

    Diagnosis

    Here is a link to the Emgality savings card you may be able to use to get it at no cost. I was able to use this along with my insurance and had 0 co pay. I hope it all works out for you, I am Chronic and did not have good luck with it but we are all different and if it has no real side effect why not give it a try. https://www.emgality.com/savings?utm_source=google&utm_medium=ppc&campaign=10500422360&adgroup=106595784409&ad=382852915174&utm_keyword=kwd-531753709621&utm_id=go_cmp-10500422360_adg-106595784409_ad-382852915174_kwd-531753709621_dev-c_ext-_prd-&gclid=EAIaIQobChMI2KyKq5LU6gIVg43ICh2FcQ8mEAAYASAAEgKFf_D_BwE
  16. FunTimes

    Diagnosis

    EggMan I have tried Emgality. The first time it took my cluster from 90 a month down to about 45, I am thinking that was just coincidence. the following 2 months it had no change on the amount of attacks I had although they did not co back up all that much either. The 4th time I took the shots all hell broke lose again and I gave them up. I am not saying it will not help you, we are all a little different. One thing I will say is make sure the shots are at room temp, they hurt like hell if they are cold, You keep them in the refrigerator for storage so pull them out a few hours before use.
  17. FunTimes

    Oxygen ROCKS

    Kat if your oxygen is being delivered to you you will want to be good friends with the delivery person. Most likely they do not know how many tanks you are supposed to have so when you place your order for 3 tanks and only leave 2 tanks out for the exchange 9 times out of 10 they will just take the 2 tanks and leave you 3. You can build your stash like this over time so you do not worry about running out over a long holiday weekend or anything. Just stay on top or your refills and build up your stock pile of tanks slowly. you will get the hang of how much O2 you will need per hit and be able to keep your supply well stocked for when things take a turn for the worst. A few extra tanks and regulators will save your ass one weekend and you will be so happy you were prepared. Your other option would to be just ask the supplier for more tanks but I have ever know that to work out very well. I am glad to hear you had success...
  18. FunTimes

    New Member -20 years of this- Pittsburgh

    If you can get the oxygen script from you doc and find a company to deliver it to you they will most likely not have the mask and regulator you will want to use. Just take what they give you and then go out and get your own supplies. You will want to ask for more then one tank and more then one size. M and M60 tanks are larger tanks that are good to keep at your home and hold a larger amount of O2, E tanks are smaller and good to keep in your can to take to and from work or just a day out on the road. You will want a regulator that has a flow rate up to 25 LPM and a cluster mask that has a large reservoir bag on it so you can get a deep lung full of only O2 and no outside air. I will attach links here so you can have a better idea of what people get. 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. FunTimes

    New Member -20 years of this- Pittsburgh

    Welcome to the party! Kind of sucks that you need to be here but it is a nice place. You will find all sorts of tricks and techniques to fight this cluster battle we are all in. As fat as busting goes you will want to look at the closed sections of the site (Share Your Busting Stories and Theory & Implementation) for members only. That will only be viewable to members of the site and more people will respond to your questions on busting. you should click on the blue banner on the top of this page for New Users. this will give you a overview of the basic information you will find here on busting. The biggest game changer in the Cluster world is Oxygen! you will want to read up on that, It can be a pain to get but well worth the effort. The D3 regimen is something you can start now and was developed by a long time member on this site who now goes by the screen name of XXX but is better know as Batch. you can read about it here https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people I am from the other side of PA, the better half just out side of Philly but I know we do have members from your area. Poke around and ask questions. we are all here to help each other.
  20. FunTimes

    First post here, and a more resilient cycle

    You will want to take the D3 a few hours away from your verapamil. I do Veap first thing in the morning when I wake up around 5AM, D3 at about 5PM and Verap again about 930pm.
  21. FunTimes

    First post here, and a more resilient cycle

    I have had times when it seems like the oxygen is not helping abort the attack totally and only helping when I am using it. Like CHfather mentioned using the 5hr drinks can sometimes give you that bump to put it over the edge just enough to kill the attack off for a few more hours. I am not sure how long you have been taking the Benadryl but I try to only take it for a week and then stop for at least another week. I feel as if it somehow builds in my system and become less effective, I have no idea if that is true or not. I was on the Verapamil 240ER 3 times a day at one point, changed over to the standard or fast release and dropped down to only taking 120 twice a day. I don't know if that would be better for you or not but something you may want to look into. As fat as more hits more often that is something that people see happen over time. Cluster change and sometimes it is for the worst. You will just need to ride it out, adjust your treatments and hope for the best. We all have tried many different things like different breathing techniques, hot or cold towels pressed on your face or neck, hot water to put feet into, ginger tea, drink cold water with a straw to hit the roof of your mouth. I am sure we have 100's more here and you may have read them all but like myself they slip the mind when all the pressure builds and the fun begins. Good luck with your move, we will be here when you are all settled in and are willing to help.
  22. Depending on what size oxygen tanks you get delivered you will need one of 2 size regulators. I will attach links for the M and M60 and E size tanks. M size tanks are larger and great to keep at the house, E tanks are good to keep in your car for work and travel. The mask makes a huge difference in the treatment so dont give up on it with the small one you will get from the oxygen place you have, Order the one below. 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 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  23. FunTimes

    My first share - My experience

    Spiny, it is funny you say that I have done this so many times and it just clicked when you mentioned that. 5hr drinks can of soda bottle of water. I have had them all pressed against my temple and neck at one time or another.
  24. FunTimes

    Started D3 Regimen three days ago

    I like to use the 5rh drinks for the size but any monster, rockstar and strong cold coffee type should help as long as it has caffeine and taurine. the 5hr drink you can down like a shot, the others are larger cans, some can drink half a can and save it for the next hit, I like the one and done approach. Good luck with the doc today
  25. FunTimes

    Started D3 Regimen three days ago

    I have added benadryl to the rest of the D3 I take and that helps me in the sprint time with underlying allergies that I do not show any symptoms of having . 3 25mg a day and then at night I will take Melatonin to help with the ones that wake you up. This could maybe help knock one or 2 more hits off your list for the day. I can not remember if you can use the 5hr drinks but I will drink one of them as well for the harder hitting clusters that wake me up, they do not keep me awake at all. Like Jon siad.. get that oxygen, if the doc will not give you the script we have the welding setup we can help you with.
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