Jump to content


Advanced Members
  • Content Count

  • Joined

  • Last visited

  • Days Won


Everything posted by FunTimes

  1. 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!
  2. 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
  3. 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.
  4. 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.
  5. 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, t
  6. 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.
  7. 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
  8. 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.
  9. 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
  10. 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. No
  11. 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.
  12. 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.
  13. Any update on anything? Scholarships? list of speakers?
  14. 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.
  15. 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.
  16. what are you using to abort them and do you take any preventative meds?
  17. 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 lo
  18. 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 pa
  19. 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?
  20. 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
  21. 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
  22. 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 buck
  23. 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
  24. 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.
  25. 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.
  • Create New...