Jump to content


Advanced Members
  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by FunTimes

  1. I would highly recommend getting oxygen to abort your attacks. No rebounds or side effects
  2. kat Have you had your bloodwork done yet to see what your levels are? Everyone is a little different and you may need to tweak a few things to get better results. I add benadryl the rest of the D3 vitamins in the spring and fall if I think some underlying allergy is messing with my head. I have never had allergy in the past but you may have a underlying symptom that you are not aware of that has no other symptom other then making clusters worse. If your D level is still low after the loading dose you may need to load again. you can always send batch a pm with the results of your blood work and I am sure he will get back to you with some ideas, he is great with that.
  3. I take 120 once a day and just had a hip replacement. They did not ask me to stop taking it. I took it 2 hours prior to the operation. Good luck to you. I broke my collarbone in high school and all they did for me was reset it and put me in a brace.
  4. If melatonin is causing you other issues then yes I would stop taking it. if all you are dealing with at night without taking it is the cluster then at least you know what your dealing with. Mix in anxiety, nausea and vomiting with clusters and that sounds like a real party...
  5. you can split your injections to extend them, you can find information here and on youtube on how to do that. You will also want to look into getting oxygen at a flow rate of 25lpm and a non rebreather mast, you can also find info on how to get that setup on this site as well. A member on this site has developed the D3 regimen that has helped countless cluster heads. Poke around this site, start bu clicking the blue link at the top of the page for new members. read as much as you can and ask questions and you will get answers. Busting is a big topic that has helped most bring clusters under control. Welcome to the site you will be happy you found it.
  6. MASH! HAHA the 4077 got me through a lot of busting nights.. Love that show
  7. Being negative is all part of the game, it happens to me all the time. I am chronic so I do not have cycles but deal with this every day every year. I try to take a look at myself from the outside and find it kind of funny that I was chosen to deal with this and was chosen because I can deal with this. I am a big fan of the 5hr energy drinks or anything similar off brand type drinks like this with the caffeine and taurine. Walmart and dollar general both sell drinks like this. For some push ups, jumping jacks or some other vigorous activity can also help lessen the pain at the start of the attack. Oxygen is the biggest help, the faster you can get to it and the faster you can fill your lungs the better. Do you have the cluster mask and a high flow regulator for your tanks? Cluster headaches suck but you are in the best place to fight them. read this site as much as you can and ask questions. Look into the vitamin D3 like mentioned by the pros above and read up on busting it could change your and your partners life.
  8. I am a big fan of clinical trials, I have taken part in 2 of them for clusters since I was lucky enough to be diagnosed including the Yale psilocybiin study. I do not do it for a cure for me but to help find a way to get one step closer to cure the future. I would like to be part of finding a cure for my children if they ever have to experience this shit storm of a life we all live.
  9. Oxygen is the best option for aborting. you will most likely need to order your own regulators for the flow rate of up to 25lpm you can get them from amazon. You will want at least a few E tanks and 1 M or M60 tank 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
  10. I would not think your cycle is ending I think the Verapamil may be kicking in. It can take up to a week for you to start feeling the effects from that. Most times your doctor will give you a Prednisone taper to hold you over until the Verap starts to work. You are better off without the prednisone, that can do some harm to your joints.. MRI is good to rule out any other things that may be going on and like Freud said you will want to look into getting oxygen to abort your attacks. I also will down a 5hr energy drink at the start of a cluster to help the oxygen kick in faster for a quick abort or to help some of the stubborn ones go away. Tuns of information on this site and everyone is here to help so read as much as you can and ask questions..
  11. I have taken Benadryl with the D3 and busted at the same time and never thought it blocked anything. I am chronic so I don't get a bunch of pain free days between bust, I did not notice any less relief with busting and taking benadryl and when I am not taking benadryl.
  12. I take both Verapamil and the d3 regimen. Verapamil around 6am and d3 between 12 and 1pm. I took prednisone about 3 or 4 years ago and just got my brand new hip! The only thing that the doc could think to pin the hip replacement on was the prednisone. I'm 43 years old. Be careful with that stuff. Dont over do it. It will keep most of the clusters away only when your taking it. Stop taking it and the clusters return. Just my experience.
  13. 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.
  14. 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..
  15. 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.
  16. 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.
  17. 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!
  18. 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
  19. I could not wait. Headaches ramped back up so I'm back to the D3. See what happens.
  20. 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.
  21. 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/
  22. 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. When I landed the company I now have I just filtered the empty tanks from the other places through. That is how I started building my collection. Like jon says they are not very good at keeping track of inventory so get to know your delivery person and take a look in the truck when they come and maybe you will see a larger tanks and be able to get it from them. Tip them, bake them a cake do whatever it is you need to do but get them on your side and you will be able to stock up on all the tanks you need.
  23. 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 ago I had a new person answer the phone when I was calling in my order and would not send me all the tanks I needed. she said I was only allowed like 4 e tanks, I was shitting my pants. Well a week went by and I called back and got what I needed again. I know at some point my luck will run out but I keep on stashing tanks away like a squirrel. Point is.. Keep asking for what you want and someone will give it to you. I find it hard to believe a company will only deal with e tanks and no other size.
  24. 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?
  25. Gonna try that smoothie next time! I get the hip replaced on August 5th so I should be good for Dallas
  • Create New...