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ClusterBusters

FunTimes

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Everything posted by FunTimes

  1. FunTimes

    Hip Surgery

    I am going in for a hip replacement surgery in August. Anything I might need to know about things causing hits in the hospital. I will do my best explaining to them I will need oxygen next to me
  2. FunTimes

    oxygen

    you can most likely get oxygen in the town you are flying to for the 2 weeks you are away. as long as you have a copy of your script you should call around and find a company that will set you up. you may need to go pick it up but some will even deliver it to you hotel.
  3. FunTimes

    Verapamil helping, hurting, or doing nothing?

    I sometimes think the same things. I take verapamil, bust, do the D3 on a regular basis. I sometimes think maybe one of them is not working or helping make things any better. I have cut them out of my routine and things wend down hill in about a week, then it takes a few days to get it back into your system so for about 2 weeks I was getting hit harder then I should of been had I stayed the course. I know I will try to cut something out again or change things up again and see what it does and get my ass kicked again but that is what makes clusters so much fun. If things are manageable for now I would hold off until after you get back from your trip. Everyone is different so nobody can really tell you what the correct thing to do is but if you and your wife are thinking maybe the D3 and or Verallamil are not working then the only way to find out is to cut that out of your routine. But be ready to jump back on it. Verapamil will need to be weened off of, you do not want to mess with your dose on that to much without talking to your doctor first. Good luck and let us know how it turns out. I hope it is all for the better.
  4. FunTimes

    WORRIED sick.

    In addition to the oxygen I will also down a 5hr energy drink to help slow down the ramp up time of the attack. ad CHfather said your oxygen needs to be at a much faster rate. you can get a regulator online that will allow you to set it at 25 lpm and once the attack starts to level off you can lower it as needed. the D3 regimni helps a lot of people and will take a few days to kick in but no harm in starting that and staying on it all year round. I also add Benadryl to the mix during season changes and I take 20mg of Melatonin before bed every night to help with the overnight attacks. Non of the things mentioned above have solved my issues and cured me but they all help a little. I was at one time getting kip 10 hits several times a day lasting up to 3 hours long. At this point I average kip 5 hits lasting about 15 to 30 minutes with occasional kip 8's. I also depended on the triptans taking several shots and pills a day and that also seemed to help with the amount of hits I get. I now save that for the real bad ones and only take them maybe once every other month when i really need it. I am in the NE part of the US and have been getting hit hard the last 2 weeks or so, I think it may have something to do with the weather in this part of the country but like it always does things will calm down and better days are ahead.
  5. This would be a good place to start. Put this in your search box at the top right. Or just click here..BUSTING CLUSTERS - CONTENTS
  6. FunTimes

    Describing CH to non-believers

    Pcaola I have not gone to Jefferson for a normal doctor visit but I did a clinical trial there and everyone I dealt with seemed to know what they were talking about and doing. I dont know if they are the same people you will be seeing but everyone I had a visit with seemed to know what cluster headaches were and understood the pain clusters cause. This does not say much about how they will treat your condition but I think you are in a good place for starts. I also started out seeing a doctor at Penn, I no longer see him.
  7. FunTimes

    Describing CH to non-believers

    Freud Sounds like you had a lot of fun growing up so far. Skate park, fire and broken bones.. We should hang out one weekend! All kidding aside. Hope things get better for you soon. I may reach out to you over the weekend.
  8. FunTimes

    2019 Patient Conference

    Any update on anything? Scholarships? list of speakers?
  9. FunTimes

    D3 clarification help

    you will want to take all the other vitamins on Batch's regimen along with the D3. You will also want to get a blood test done to see what your levels are now.
  10. FunTimes

    Remission

    you may want to look into the D3 supplements created by a member named Batch. This has helped keep my attacks lower on the kip charts. Using the O2 will help keep down the rebound attacks the triptans can sometimes cause. I also have had success drinking down a 5hr energy drink at the first sign of a attack along with my O2.
  11. FunTimes

    Remission

    what are you using to abort them and do you take any preventative meds?
  12. FunTimes

    Boswellia Serrata

    Freud My wife was into essential oils and has given my a little frankincense oil on a little piece of tissue about the size of a tab of L. I would keep it on my tongue or under it or just in my mouth any way I could for a few minutes and it did seem to help. I could not set this up in advance to give myself and I could not get the oil on the tissue when I had a cluster but when she was around id did help. I used this before I got my oxygen and early on when I started busting. At this point I dont get the major hits like I did in the past so I have not done it in a long time. I meant to look around my house this weekend for a few triptan shots I had stashed away that I dont use anymore but I got hit a bunch this weekend and a few that lasted an hour each, must be that time of year in our parts.They are expired but should still be fine. I use to use them past the date stamped on them and had no issues. If you break them apart you can get a few out of one shot. I will make it a point to find them and try to get them over to you. I will let you know what I come up with. I may even still have a little Frankincense oil.
  13. FunTimes

    Looking for advice

    Maddie Clusters tend to come and go not give constant pain for days. If this all started after the tooth was removed and not before I would have this looked into, you could be dealing with something else. People have reported oxygen not working as well as it once did in the past. I find this happening to me but it is due to me getting lazy with my breathing tech. you can try downing a energy drink on the way to the oxygen tank to help but if your blood pressure is high that might not be a great idea. I would get checked out by a doctor and rule out anything else that may be causing the pain and rise in blood pressure.
  14. FunTimes

    2019 Patient Conference

    Are you going to have a raffle table set up this year and if so how do you go about donating to it? What other ways can people help out with this event?
  15. FunTimes

    Becoming unmanagable

    The oxygen we use it in tank form. You can get a script from a doctor or set it up like a welding system. You can get different size tanks so you can keep one at home and another in your car so you can hopefully get to it when you are at work. Batches D3 can help knock the amount of hits you get and the pain level down so it will make it a little more manageable. You can use energy drinks or strong coffee to slow a hit down as you make your way to the oxygen tank. You will need a high flow regulator and a cluster mask to optimize your setup but that would be top on my list of things to get. It can change your life.
  16. FunTimes

    Help for a friend

    Read up on the D3 regimen, it is just over the counter vitamins that you can find at most drug stores here in the US. You may need to find some online. Find out how he used the oxygen, was it at 25lpm with a non re breather mask? Most people start out using Verapamil at high dose prescribed by the doctors office. You will find all kinds of things people have tried on this site, poke around and ask questions. Not everything works for everyone. He will need to try a bunch of things and figure out his own line of attack. I down an energy drink and get on my oxygen as soon as I feel a cluster coming on and I can abort it most times in 15 minutes.
  17. FunTimes

    New member - not new to clusters

    depending on how the benadryl reacts with your system you can also take that during the day. I will add 25mg 3 times a day and then the melatonin at bed time when things get bad for me. I would push hard for the oxygen and make sure you get the correct setup with the cluster mask and high flow regulator. You can just take when the oxygen company gives you and put it aside, they screw it up all the time. Order the correct things online and it will make a huge difference. I would ask to get your head scanned just to make sure things are all screwed on correctly, It will only cost a few bucks to make sure your going to stay alive to enjoy the years of cluster fun! Have you ever been given Verapamil or any other preventative medication to take daily? Verapamil at large dosses can help many keep clusters in check. The shadows can be helped with energy drinks, ginger tea and strong coffee for a lot of people. Cluster headaches will change over time and can be different for every cycle and also move from episodic to chronic so you will want to keep a log book of when you get hit, how long and what you did to abort it. This way you will be able to look it over and come up with a good plan on how to deal with it the next time.
  18. FunTimes

    Short window and mild symptoms

    Don't hesitate to ask any questions, it is not a competition and having one a year or 500 they all suck and we would like to help you. Plus if you are or will become a doctor we would like to have you on ore side! like CHfather said you should get on the full vitamin D3 it can make a big difference for you. Oral triptans take at least 30 minutes to start helping so they can seem worthless at times but it is better then nothing. I would look into getting oxygen set up to abort your attacks and the energy drinks taken at the first feeling of the cluster coming on can get you a few more minutes to get to the o2 tank. If everything works as planned for me I can sometimes abort a attack in 5 minutes. That is with downing a 5hr drink and getting on the oxygen within the first minute of any cluster feeling coming on. In real world situations I abort my attacks in about 15 to 20 minutes with only o2 along with my other preventatives I do every day and 5 days.
  19. FunTimes

    Benadryl for CH

    It does not make me tired at all during the day. Same as if I down a energy drink at 2am it will not keep me awake. I am not sure how or why this is the case, maybe my body is use to it or is processing it in a different way? I would say test it out on a day off so if you do get tired you can adjust things before you go to work.
  20. FunTimes

    Benadryl for CH

    I take benadryl along with the D3 when I start getting hit above my 3 a day norm. I take 3 a day along 20mg of Melatonin at bed time.
  21. FunTimes

    Energy drinks

    Energy drinks work to hold a cluster back long enough for me to get to the oxygen. on a rare occasion when I am far from my oxygen they can sometimes abort the attack but not always. 95% of the time I need the o2 or I am on the o2 before the energy drink has time to clear things up on its own. I have used anything I could get my hands on when needed. 5hr energy, red bukk, monster, cold and hot coffee and just about any name brand that has caffeine and taurine
  22. FunTimes

    Shadows

    I do get this at times. I can sometimes make that feeling go away with stong coffee, 5 hr energy drink, any type of energy drink like monster or redbull. I have also has success with strong ginger tea for days like that.
  23. FunTimes

    Sumatripton 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
  24. FunTimes

    Oxygen Mask question

    I can not breath in or out of my nose during a attack but under a normal situation with a setting lower then the 25lpm I would be able to breath through my nose and have the valve work with little effort. I typically have the O2 running up at 15 to 25 and will inhale with the mask on take it away and exhale fast when the bag is full. After the pain starts to go away I then lower the O2 rate and breath with the mask on and the valve will give a little resistance but when I am not exhaling as hard and fast it works out fine with my timing.
  25. FunTimes

    Oxygen Mask question

    does the bag fill with air and you can inhale fresh oxygen from the large reservoir bag? What would happen if you take just the face mask off of your setup and blow into the end of the T valve? Would that little flap on the other end of it open to let your exhale out? If not I think maybe that little flap might be stuck shut and needs to be looked into. If you let the oxygen fill the bag to the max without having it against your face you should feel the oxygen leaking out, if you block it from leaking into the face mask it should all go out on the other end with the rubber gasket end. Just a few things to look at. The are kind of basic but when you are getting hit with a bunch of headaches a day sometimes you just need a little help.. I have been there many times.
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