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FunTimes

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Everything posted by FunTimes

  1. 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
  2. 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.
  3. 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.
  4. 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.
  5. 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
  6. 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.
  7. 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
  8. 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.
  9. FunTimes

    Anyone live in CT or in tri-state area

    Something to look into: https://clinicaltrials.gov/ct2/show/NCT02981173?cond=Cluster+Headache&cntry=US&draw=2&rank=6
  10. FunTimes

    My first share - My experience

    Another thing that may help when you are out and do not have your O2 is energy drinks like 5hr energy. I have also user Monster and Rockstar type energy drinks. I would see if your oxygen company can get you a smaller E size tank to keep with you in your car. Sounds like your on the ball with everything your have done so far. I would maybe add a journal to logg all your attacks, what you did to abort them and how long and painful they were? You can them look back to see what has helped to end the pain a little better then some other things.
  11. FunTimes

    Oxygen from Primary Care?

    When calling around for oxygen make sure to ask for pricing with and without insurance. I was told it would be over $200 a month for up to 3 deliveries with my insurance. I told them I want to pay out of pocket and it went down to just under $100 a month. You will want more then one tank and even a few different sizes. E tanks are a good size to keep in your car and at work is you can. M60 tanks are about twice that size and are good for home use. a M60 tank is about twice the size of a M60 and is even better for home use but is a little heave to lug up stairs but is worth it is you can manage to get one. After you have your company set up and a few tanks we can help you with ways to grow your collection so you will be sure to have enough tanks to cover you when things get bad and you are using it a lot.
  12. FunTimes

    Oxygen from Primary Care?

    As far as I know all you need is the prescription. That could come from either of the 2 doctors, then you can call around to local O2 suppliers and work out the rest with them. I would not get to hung up on the flow rate of the regulators they give you because most likely you will want to buy your own, same goes for the mask. I found it much easier to make the calls to the oxygen providers myself, tell them what I wanted and what I need the doctor to send them and them call the doctor and tell them what to write on the script. It is a pain in the ass and yes you are doing someone else job but that is the only way you will get what you need. here are links to the regulators and mask most of us use. If you are comfortable giving your general location im sure we have members on this site that may know of a good oxygen supplier that can deliver to your home. 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
  13. FunTimes

    50 yr old Newbie

    Thats alot of info in just under 24 hours. As you can see you have found the best place to be with a lot of people willing to help as much as they can. I can only add some links to this for you to find the mask and oxygen regulators we all seem to use. Most people will get a E size tank and a M60 size tank, the larger M tank will take the same regulator as the M60. 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
  14. FunTimes

    Looking for clusterheads who also surf?

    I surf the web and bang my head sometimes.. Does that count?
  15. FunTimes

    Benadryl

    I add benadryl when the pollen in the air gets bad. I do not have any allergies that I know of, no runny nose or itchy eyes. I do get a feeling of a little more pressure in my cluster side and the benadryl kind of clears that out for me resulting in less attacks. I will take it for a few days to a week 3 times a day and then take a week off. I also take melatonin about an hour before I go to bed. This sometimes helps with clusters waking me up although I have had times that I am dreaming I am doing oxygen only to wake up to a killer cluster. We are so lucky to deal with this stuff.
  16. FunTimes

    Greetings

    Doctor visit with MRI is a good place to start to rule out anything else. read as much as you can and ask questions. I am sure you will find much help here.
  17. FunTimes

    Has anyone tried emgality?

    This site was built off the idea of taking the alternative medications. You will want to look at pages in the members only portion of the site for all the information you might need on how, when and why. read up for a few days and ask a lot of questions. I am sure someone here will be more then happy to help you bring your clusters under control. Starting the D3 is a great start. you will want to read up on oxygen to use as an abortive. Energy drinks, ice, drinking cold water with a straw, and hot foot bath are some other things people use to help bring intensity down. You will learn more from this site then you will at most doctor offices.
  18. FunTimes

    Has anyone tried emgality?

    I did the Emgality thing for 4 months. 1st try was only 200mg and it cut my clusters just about in half that month. The next month dose was the full 300mg and it had no change on my monthly cluster count. same for the 3rd month. the 4th month of Emgality about 2 hours after my 3 shots to the stomach I started getting hit with a nice bout of clusters that lasted a few days. so I never went back to it. I am not saying it does not work, it just did not work out well for me. After that first dose I thought I was in good shape but like most other things I have tried in the past.. I am still here looking for solutions with the rest of us all. If you can get it I would say give it a try. Here is a link for the savings card. https://www.emgality.com/savings?utm_source=google&utm_medium=ppc&campaign=6506846331&adgroup=79794815964&ad=382852916392&utm_keyword=kwd-528836136696&utm_id=go_cmp-6506846331_adg-79794815964_ad-382852916392_kwd-528836136696_dev-c_ext-_prd-&gclid=EAIaIQobChMIj-aK1Ibj6QIVE9bACh3M0wEHEAAYAiAAEgLmI_D_BwE
  19. FunTimes

    Anyone else having this oxygen issue?

    I do notice my cluster side nostril is much more sensitive then the non cluster side to the point that if I rub my nose sometimes it can trigger an attack. Try moving from the nasal cannula to a mask that covers your nose and mouth. A non rebreather type mask works best for most eliminating the outside air from mixing with your fresh oxygen.
  20. FunTimes

    New with the problem of Cluster Headache

    You will also want to read up on different ways of getting and using oxygen to help abort the attacks when they come. It may be hard to get the optimal oxygen setup now with everything that is going on but something to look into. I also have found that drinking a 5hr energy drink or any strong caffeinated drink fast at the onset of the attack can help keep it from reaching full strength. Good luck, read as much as you can and ask questions.
  21. Went to the Doc yesterday and was recommended Lithium and or a Occipital nerve block. Declined the block for now and took the script for the lithium. I know how to work the search feature on this page and have done a lot of reading about lithium and it seems like people try to stay away. I want to know if it has helped anyone. I read that you should not bust when on Lithium, What happens if you do? Has anyone had a bad experience? Yes it has side effects but are then any worse then the feeling of having you tooth pulled out of your head 3 times a day? I have played the Verapamil game, do the D3, bust with whatever I have on hand and still get hit every day. Yes it is only 1 or 2 times a day at the moment but it still blows. I am just tired of trying all kinds of stuff that might help or help a little for now. I will most likely take the lithium along with the verapamil d3 and bust on weekends regardless of what people say but I figured I would toss it out and see what others have to say. I know this is the life we as clusters live and it sucks. I am just in a mood to bitch today. Any advice or experiences?
  22. FunTimes

    Lithium or Occipital nerve block

    Not much change, I went back on the D3 after 2 weeks of not taking anything. I was getting the same amount of hits but they were trending upward in length and severity a little. I did my bust over the weekend and had a bad day following witch is normal for me. I feel the LSD I took was a little weak so I will be on the lookout for a new batch of that. I have not yet tried the Zolmitriptan patch thing yet but need to do so soon as I have a appointment with them on Monday to go over how it worked. I just need to work up the courage, 20 minutes with nothing to abort other then the patch they gave me, It's going to be a great time if I have placebo!
  23. New study for the Zolmitriptan microneedle system is now available for us lucky clusterheads. I do not see it on clinicaltrials.gov but I am enrolled in the Philadelphia area. Same old drug just a new way to administer. This is a small patch about the size of a quarter with a bunch of small needles on it that are coated with the medicine. Kind of feels like a cat tongue or shark skin. They give you one patch treatment to use at the first feeling of a cluster coming one and you have a few days to report back to the office. seems like a low risk trial if you have used any triptans in the past. Might just give someone another option when the injection triptans cost is out of reach. Something you may want to ask your PCP or headache specialist about.
  24. jon It is one patch per hit. you apply the patch to your arm when you feel the cluster coming one. They only gave me one for the study, could be the real thing could also be placebo. The way the study breaks it down for dosage is like this: They actually give you 2 patches and you will use both for one cluster attack 1.9mg consisting of one 1.9mg patch and 1 placebo patch 3.8mg consisting of two 1.9mg patches you have up to 48 weeks to treat one qualifying cluster attack after being accepted into the study and must report back tot he office within 4 or 5 days of your treatment. I have a doctors visit on the 24th so I am holding off to use mine until the weekend before. I am lucky enough to get hit every day so I can time it out like this. Saves me from taking another day off work for a doctors visit. Weather it works for me or not I am not even that interested in, I am not a big fan of any triptans, but if it can help someone else get through just one more day then it is worth giving it a try to be approved and moved to market. As far as the cost goes I figure the mor options on the market the more competition. I know that sumatriptan pills cost me around 20 bucks for a box of 9 and the injectables are 120 each shot. I figured a patch would maybe work much better then the pills do and not cost as much as the injections. I have no idea what it will end up costing in reality I just hope it gives another option for someone that can not afford the injections. Here is something I found on the study from migraine https://www.neurologyadvisor.com/conference-highlights/aan-2018-coverage/new-zolmitriptan-intracutaneous-system-safe-and-effective-for-migraine/
  25. FunTimes

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