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Everything posted by FunTimes

  1. A few times I have said the hell with it and got hammered. I was on the o2 tank a few times the first hour but powered through and kept on poring shots. That was with Crown Royal and about a half gallon. funny thing is after the night of drinkin I got 2 or 3 PF days. Now the last time I tried this I ended up banging my head on the floor for 3 strong hours with nothing easing the pain. I have not had the guts to give it a try again. Almost did this past weekend but could not bring myself to try.
  2. Sounds like a good one this year. I might need to order 2 flighs of energy shots at the bar for all the people who have helped me out in the past!
  3. Jeler my name is funtimes and I also am a user of 5hr drinks.. haha I never had anything like a energy drink prior to my clusters. I read about it here and did not have my oxygen set up yet so I figured I would try. I find the 5hr type drinks, you can use redbull or anything with taurine and caffeine, will slow down the ramp up time of the attack so I have better results using the oxygen when i get to it. I down the drink on my way to the O2. The O2 alone will change the game for you. You can abort an attack in under 20 minutes most times. I am chronic and have only been playing this game for about 6 or 7 years but prior to this site it was even more of a living hell. I tend to forget that sometimes. You will find all kinds of help here as you already seen. I also do the D3 with the Melatonin at bed time. I also will add Benadryl 3 times a day when things get real bad.
  4. I will be flying in on Thursday morning for my second conference. I am staying across the street at the Marriott with my brother in law. Looking forward to it!
  5. Trucker I entered this party thinking it was my teeth and had a root canal done for no reason. That didn't fix any of my pain and was told by a different dentist it was the clusters causing the pain. Things got a lot more fun after that. I feel it in my upper teeth to the point I want to snap them off at the root! It will linger for a little after the attack is over sometime too. Some people drink cold ice water with a straw pointing to the roof of their mouth during a cluster to try to create a brain freeze feeling, I have pressed Ice to the roof of my mouth and on my teeth but it did nothing but aggravate me.
  6. Here is a link for the D3 a member on here named Batch came up with https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people You will want to go get your blood test to see what your vitamin D levels are now and then again about 3 months after you start taking all the vitamins to see what changes have occurred. After that you can tweak things as needed to help better. A lot of people on this site have gotten relief and poster results and different things they may have added, search D3 on the upper part of the page under your user name and you will find a tun of information. You can click on the envelope on the top of this page next to your user name and send Batch a message with any question you may have after reading up on this and I am sure he will get back to you Are you using anything else to abort your attacks? You can do it without insurance, plenty do, by setting up a welding oxygen setup. You will want to get oxygen as soon as you can it will change your life for sure.
  7. Getting on the D3 is the fastest thing you can start to do on your own. Do you have a doctor or headache specialist you see? Getting the oxygen setup would make a world of difference in how you feel and you most likely will not have the 2-3 hour hits. Oxygen if used correctly can abort a hit in under 20 minutes. I down a 5hr energy type drink on my way to the oxygen tank to slow down the ramp up time of my clusters. Other things you want to look at on this site are ginger, ice, hot foot bath, exercise. these are things that cost little to nothing and you can start today at home Busting is another option you can look into, this will take a little more time but has worked wonders for a lot of people. Poke around in all the forums and dont be afraid to ask questions.
  8. Oxygen is a must, without it I would go insane. I drink so much water I don't remember the last time I was thirsty. I just keep drinking it down all day and night. between that and the coffee I could be a fountain as some strange hotel lobby. One thing i learned about oxygen is you can not be to picky on what the o2 company gives you, take what they give you and you can find the rest online.
  9. As far as I know it is still going on and recruiting. I will try to find out and let you know. I do not know about the age limit on it either but will try to find out about that to if you want me to.
  10. I have dealt with Dr Schindler, She is doing the study at Yale, and she is great. I am sure if you emailed her she would be willing to answer any questions you may have. Let he know your a member of clusterbusters.
  11. Have you tried Verapamil as a preventative instead of the lithium? You can take this at a sumwhat lower dose and bust at the same time. What else do you use to abort your attacks? Oxygen D3 regimen also woll help cut down on your daily clusters, have you had your vitamin levels checked to see if you are D3 deficient?Check out this link for info on that https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people
  12. Gore Your best bet for getting mushrooms is to grow your own. you can find all kinds of information on the boards by searching MM in the upper right corner of this page and follow the link at the top of this page that says new users read here first. Figure out how you want to get started and ask alot of questions.
  13. yes, that is what they said it was. No evidence of it in the other hip so he said I most likely will not get it on that side.
  14. Thanks for the info. I will be asking for the oxygen to be close by even if I need to bring my own mask and regulator and to have a dose of sumatriptan at hand as well. It kind of sucks that my hip took a crap on me. They have no idea what caused this, I knew from the start that Prednisone could lead to this but I have only taken 1 or 2 dose packs in the last 6 years or so. I am only 43.. just have that much good luck I guess. Buy the bulk pack of Clusters and in the bottom of the box you find a coupon for a new hip!
  15. That is correct.. You can also find info here https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people
  16. I have been on the D3 with all its vitamin friends every day for over a year now. It has brought down the amount of pain and frequency of the attacks but not to a pain free level. I keep at it, every little bit helps. I didn't know if I should be asking for a certain type of anesthesia that would not trigger a cluster.
  17. Now that you are a member you have access to other parts of the site. Be sure to look around and ask a tun of questions. Click on the banner at the top of the page that says new users read this. A lot of times stress will hold the clusters off and relaxation will bring them on. Some get them every day on the way home from work or just after getting home from working when you can relax a little. Some also get more on the weekends and days off.
  18. You will find by browsing the site that this is fairly common. People have the cluster cycles change all the time and it is totally normal. This change can be a one time thing and you will now get your clusters every June or it could just be added fun for you only this year and you go back to the end of October. Have you changed anything recently to cause this to come on this year? Diet, move or any sleep pattern changes? This can sometimes trigger a cycle for some. What do you use to abort your attacks? Do you have oxygen set up? Try looking into the D3 regimen created by Batch, this can be taken all year round, is only over the counter vitamins and has been reported to bring extended pain free status to some people.
  19. Click on the blue ribbon at the top of the page that says NEW USERS - READ HERE FIRST and that will point you in the direction you want to go. Ask as many questions as you can think of and I am sure someone will have an answer for you.
  20. 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
  21. FunTimes


    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.
  22. 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.
  23. 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.
  24. 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.
  25. 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.
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