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FunTimes

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Everything posted by FunTimes

  1. Relaxing is a trigger for me. If I have a busy or stressful day I am fine until the stress or activity ends. I get in the car to come home and can get hit or I get home and sit down to watch some TV and get hit. seems like weekends when I am more relaxed I get hit more often also.
  2. Freud has you on the right track. I have stopped going to doctors because they have no idea what we as clusterheads need to control our condition. If you have a doctor who does not listen to you and/or says he can cure you from clusters it is time to move on. After you are 100% sure you do have clusters and not anything else going on in your head with a scan we have a tun of experience on this site to help you cope. starting the D3 regimen is a great start and can bring some to many pain free days, you can take it all year round to keep you clusters beat down. just remember your not cure
  3. Back to my comfy zone with 6 to 8 attacks a day.. Life is good again, I missed sucking down o2 tanks like glasses of water, I was tired of dusting the dam things off anyway. Day time is not to bad, nights suck hip is on the mend but hurts like a bitch when I need to move with a cluster. I can say that for me max hip pain is equal to kip6 cluster pain. After the cluster goes over kip6 I don't know about the hip pain anymore until after it is all over. Then I get to grab some ice for the hip, sit in a recliner wait for the fun time to start all over again! I just hope the added hits I am n
  4. All you need to do is call the number listed and take a short interview. Dr Schindler will then need to call your neurologist and confirm that you do have clusters. I had a neurologist at the time so that is the number I gave her to call, I can only assume that your pcp can fulfill this requirement. Here is the linnk to the study: https://clinicaltrials.gov/ct2/show/NCT02981173?cond=Cluster+Headache&cntry=US&rank=6 Contacts Contact: Emmanuelle Schindler, MD, PhD 203-932-5711 ext 4335 emmanuelle.schindler@yale.edu
  5. I could not wait. Headaches ramped back up so I'm back to the D3. See what happens.
  6. The last few weeks have been interesting for me and I just wanted to tell everyone what has been going on. I have been on Batches D3 for a long time now and I think I found my sweet spot towards the end of last month. I take everything on the list and had just upped the vitamin D 20,000 a day. I was down to 1 or 2 low level attacks a day. I had a doctors appointment on the 26th of July to go over my hip replacement and was told to stop taking the fish oil and vitamin K. 4 days later the clusters stopped.. Totally, no shadows, no pressure no nothing just pain free days. On August 5th I went in
  7. Dana I just had a hip replacement this past Monday and had no Cluster attack caused from the surgery. I was doing well just before the operation and will be posting a thread about what is going on with me now.
  8. Give this a try, I don't know if you are close to any locations but maybe they can help. This is the parent company of the supplier I use. Sorry you are having so many issues. I wish I could help more. https://www.adapthealth.com/
  9. When I was first starting out on my oxygen adventure I found a few smaller shops that sell chair lifts, walkers and things like that for home care. They would sell me e tanks for 15 to 20 bucks each and then start screwing with me when I was going back in every other day for a refill, they only keep maybe 10 tanks in the shop at a time. Well one of the places said they were going to up my price to 50 a tank because of the added paperwork I was making them do so I kept one of the 3 or 4 tanks from them and another place just stopped answering my calls so I kept all 4 of the tanks he sold me. Wh
  10. My oxygen company told me they did not have or deliver M tanks when I first started out with them. then one day I was expecting them to drop off a M60 tank and they screwed up and gave me a larger M tank. So from that point on I knew how unorganized they were and started ordering what I wanted regardless of what they said they had and sure enough I get it. I figured out that the person taking to order on the phone does not know or care what I order and the driver just wants it off his truck so he does not keep track. I built up a nice stash of all sizes now and thank god I did. A moth or so ag
  11. I went to the convention last year and met a bunch of people but did not ask any screen names. I did not have my screen name on my tag either and was never asked. This is the only online forum I have ever been a part of and figured it was more of a respect the privacy thing so I did not think of asking any questions. I would love to meet you all and be on a real first name basis with you all and be able to help out whoever I can. I think it is so cool that members like DD and Jon know someone or have a friend just about any place another member is in need of help. I am new to this site compare
  12. Gonna try that smoothie next time! I get the hip replaced on August 5th so I should be good for Dallas
  13. 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.
  14. 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!
  15. 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 thi
  16. 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!
  17. 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 n
  18. 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 u
  19. 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 Bust
  20. 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.
  21. 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.
  22. 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.
  23. 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
  24. 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.
  25. 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.
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