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Posts posted by FunTimes

  1. 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



  2. 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! 

  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, 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. 

  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. 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 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. 

    • Like 1
  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. 

    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.  

    • Like 1
  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. 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. 

  13. 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 look around my house this weekend for a few triptan shots I had stashed away that I dont use anymore but I got hit a bunch this weekend and a few that lasted an hour each, must be that time of year in our parts.They are expired but should still be fine. I use to use them past the date stamped on them and had no issues. If you break them apart you can get a few out of one shot. I will make it a point to find them and try to get them over to you. I will let you know what I come up with. I may even still have a little Frankincense oil.

  14. 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 pain and rise in blood pressure. 

    • Like 2
  15. 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 can change your life.  

    • Like 1
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