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ClusterBusters

FunTimes

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Everything posted by FunTimes

  1. FunTimes

    Looking for advice

    When I first started out with my clusters I thought is was a toothache. It would bother me for a month or 2 and then go away for a month or 2. This pain free gap slowly shortened until I had this shooting pain every day but not all day. I had a root canal done and that did not fix the pain so I was refereed to another dentist who told me I had cluster headaches. You have already had the MRI witch is a great start due to the head injury. I would look to see a headache specialist to figure out if it is in fact clusters you are having. I would keep a log of each headache you get, what time it starts, what part of your head, runny or clogged nose, does your eye tear, and how long it last. See if you have some sort of pattern. Like Moxie said Clusters tend to come the same time every day and a diary will help the doctors figure out what is going on. If you do end up having clusters you are in the best place to fight this and we have a tun of people here that have dealt with this for a long time and tried just about every trick in the book. Things to look into will be preventives like Verapamil, abortive like oxygen and long term treatments like Vitamin D and busting. All of witch are covered in full on this site. Poke around and ask as many questions as you can and we are happy to help. Sorry you have to be here but this is a great place to be for help.
  2. FunTimes

    Short break

    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 for the hip replacement crapping my pants that I was going to be hit non stop all day. To my surprise I did not have any clusters at all. I was told after surgery that I needed to stop the rest of the D3 vitamins because of blood clotting issues. I am allowed to take my Verapamil and they added a baby aspirin twice a day. On the 7th I had my first twinge of a cluster comin on so I grabbed my O2 and downed a 5hr energy drink, 10 minutes later it was gone. I was thinking maybe it was all in my mind and I would be fine.. Well every day since I have had 3 Clusters a day, low level pain and the longest one was only 30 minutes but they are coming back and getting stronger with every hit. The hip is doing fine other then the big bruise that feels like I was kicked in the thigh by a horse and I am limping around nicely. I was also told to stop smoking a week before the replacement and continue for 6 weeks after surgery. I was smoking 6 or 7 cigarillos a day and yesterday started back on that but only 1 a day so far. My question is this.. At what point do you think I can get back on the full vitamin D? I think this is what had me pain free for the few days around surgery, Do I take everything except the fish oil and K or do I take it all? Are the few clusters I am now getting due to the interrupted sleep and less stress of the surgery? I know nobody have a solid answer and no two people are the same but maybe someone has had a issue like this before. Any help, criticism or recommendations are welcome.
  3. FunTimes

    Short break

    Pebbles How far along are you in recovering from the hip? I am on day 14 and just ditched the walker and using a cane only now but it still feels weak and tired. I am doing the stretching a few times a day and walking as much as I can every hour or so. I have about 40 stairs in my house and am now doing them a few times a day. I kind of thought I would be doing better then this at this point. I still have not gotten into a car as I fell that would hurt. I hope your doing well and the clusters are letting you heal without issue..
  4. FunTimes

    Just a question

    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.
  5. FunTimes

    Vitamin d3 regimen

    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 cured, if you stop they will most likely come back. you will want to start looking into getting oxygen first then imatrex, 5hr energy drinks for aborting. Verapamil at high doses is given to help prevent attacks. Then read up on the different busting options. read as much as you can on the site and ask as many questions as you can, we are all here to help each other. I would also start a log of some sort to keep track of your attacks, just write down the start and stop times, how painful they are and what you did to abort them. You can add a million different thing to figure out what the cause was but that can make you nuts. People sometimes track what they eat, the weather and any sleep or activity changes that may have triggered it.
  6. FunTimes

    Short break

    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 now getting are taken away from one of you out there. Once I can walk without a walker and use a cane I think I will hit the busting hard again. At least then maybe I can float around the house instead of hobble. AHHHH it's good to be home again!
  7. 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 Contact: Christina Luddy, BS 203-932-5711 ext 4549 christina.luddy@yale.edu
  8. FunTimes

    Short break

    I could not wait. Headaches ramped back up so I'm back to the D3. See what happens.
  9. FunTimes

    Getting circumcised

    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.
  10. 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 compared to most but would like to keep this thing growing and spread the word about this. Just about every day another new member joins this site and has been suffering for many years. why does it take so long to find out about us?
  11. Gonna try that smoothie next time! I get the hip replaced on August 5th so I should be good for Dallas
  12. 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.
  13. 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!
  14. 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!
  15. FunTimes

    Newb here

    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.
  16. FunTimes

    Newb here

    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.
  17. FunTimes

    I need help from the veteran survivors of CH

    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.
  18. FunTimes

    New need info

    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.
  19. 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.
  20. 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.
  21. 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
  22. 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.
  23. 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
  24. FunTimes

    Hip Surgery

    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.
  25. FunTimes

    Hip Surgery

    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!
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