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Everything posted by FunTimes

  1. 4 weeks out from last treatment and still hanging in. Not complete pain free but now averaging about 7 clusters a week instead of a day, for me that is as close to pain free I have been in years. Question now is do I do a bust to see if it puts me over the edge to total pain free or do I hold out and see how long this last. I am afraid to rock the boat with a bust and have it set me back.
  2. Are they not providing tanks to anyone or only headache therapy customers? The company I have used for years stopped providing for headache therapy and it took me over 2 weeks of calling and climbing the chain of command to get to the VP in my area. I had to come up with a compromise with the kind fella and now I pay twice as much and get half the amount of tanks I did in the past but I am still getting them so that is all that counts. Don't just take what they say, apply pressure and ask to talk to the next level of management until you get what you need. Then butter up the delivery driver to get as much out of them as you can. I am not in your area, im on the east coast but it may work for you too.
  3. What is it that the average person would be doing during this event? Does everyone speak comment or just listen? Is this an inside event or more of a gathering outside just to show support for the cause? I have often thought about going to this but do not want to waste 2 days just wandering around aimlessly and not really doing any good for the cause. Can you give some insight on what happens and how thing play out over the 2 days?
  4. So 2 weeks out from the last infusion day and still feeling much better that before I had this done. I am still getting hit 1 to 3 times a day but they are MAYBE a 3 on the cluster scale and last only 5 to 10 minutes most with using oxygen. I have only had 1 5Hour energy drink in the last 2 weeks and am still on the same M60 tank so that itself is a big help in the pocket. I am thinking about tossing a bust or 2 into the mix next week just to see if I can get this knocked out totally for a few days but am a little nervous that I will F something up and fall back into hell again. Currently getting the little hits overnight and it still sucks to wake up and hit the 02 tank but I can deal, I can work and get a tun of things done during the day again. So far I am pleased and would recommend but I have not gotten the bill or know how long this will last yet so that may change my mind..
  5. Weekend update is not bad but much better that things were, depending on how you look at it. Friday had 3 what I would call very minor hits lasting about 5 minutes each and killed with oxygen. Saturday had 2 hits but one of the 2 lasted about 20 minutes and needed the help of a 5 hour drink to kill it off. Sunday wad one hit that woke me up that also needed the 5 hr dink helper shot to kill it off in about 30 minutes. Weeks leading up to this treatment were getting slammed up to 6 times a day all of them were 30+ minutes and a lot of 5hr drinking, ice and whatever else I could get. This is all after a September that had me looking over the edge of that cliff! Busted a few times to bring it down to the 6 a day then did this treatment to try to get into a better place. Now I can start to think a little better and find a new strategy. I love it when Clusters make a change and kick you in the face to let you know you still have a friend! Only a week since the start, Not sure what this will end up costing me yet but overall things are going better.
  6. So I did the treatment this week, Monday-Wednesday, Each day I was given 2 treatments that took about 6 hours each day. This is the concoction I was given: Day 1 of 3 IV Benadryl 25 mg IV Reglan 5 mg/5 mg IV DHE 0.25/0.5 IV Solumedrol 100 mg IV Mag 2 g Day 2 of 3 IV Benadryl 25 mg IV Reglan 10 mg/10 mg IV DHE 0.5/0.75 IV Solumedrol 100 mg IV Mag 2 g Day 3 of 3 IV Benadryl 25 mg IV Reglan 10 mg/10 mg IV DHE 0.75 mg/1 mg IV Solumedrol 100 mg IV Mag 2 g No clusters from the start of treatment, during treatment and relief lasted 36 hours after the last treatment. I was hit with a very small cluster that I aborted with oxygen in 5 minutes and than another about 2 hours after that. Hope they are just little slap back type and I can keep thigs calm over the weekend. not expecting a cure here just a little break from the head banging.
  7. Luis, Glad to hear your pain free, as far as your questions about using stuff in the future I think you should just start askin... Be ready for when the future comes so you have a clear understanding on what it is you want to do and how your gonna attack your next cycle. It is much easier to plan for it now when your feeling better then when you getting your head kicked in a few times a day.
  8. Thanks for the reply CHF, I have looked at a few posts from the past, I was hopping someone has tried this recently with any long term positive or negative response. I know that if they had a positive response they probably will no longer be hanging around this site but its worth a try. I have reached out to a few of our doc friends up north for some info as well. I will most likely just give this thing a go and report back here how it went. Nothing to lose at this point and being chronic ill take a short 3 day break any time and way I can get it. Thanks for all you do here on this site, been reading your posts for quite some time now.. Your a good person!
  9. Does anyone have any updated information on a Dihydroergotamine infusion treatment? I just signed up for a 3 day treatment and am wondering if anyone has tried this? Lookin for the good, bad and ugly effects I may encounter.
  10. something like this may also work. https://www.engraver.com/pneumatic-shut-off-valve-push-to-connect/ https://www.amazon.com/Antrader-Forged-Switch-Degree-Operation/dp/B07Y33Q1KX?source=ps-sl-shoppingads-lpcontext&ref_=fplfs&smid=A19TVI3M6WFVG7&th=1
  11. I have not used the peppermint oil but I do use frankincense oil on a little piece of tissue and press it to the roof of my mouth to help reduce the ramp up time and aid the oxygen. I will use it as an alternative to a 5hr drink and it seems to have just about the same effect for me. Frankincense and oxygen combo and I can kill off an attack in 5 minutes most of the time.
  12. Peter Batcheller does reply to posts on the site but now goes by the name of XXX. you can also DM him and he will reply to you. He is a very helpful and well known man in this community. You send him your number and I am confident he would call you and help the best he can. He may be slow to reply because he does go to a remote location on a fishing trip every year. I know this from experience and speaking with him on a few occasions myself.
  13. Interested to see how this works out. I have thought about a setup like this to install in my car so I have a 02 port coming out of the dash and the tank in the trunk.
  14. The only thing I would worry about is the pressure from the tank blowing the tubing off of one of your connections. I don't know how long the normal 02 tubbing can hold the pressure of a full tank at around 2000 psi. Just something to keep an eye on.
  15. if you have the script from your doctor for the oxygen start calling around to all the vendors in your area and get the ball rolling. You will probably only need the tanks from them and get your own regulators and mask. I pay out of pocket for my oxygen as it is cheaper for me that way. Here is a few links to regulators and the oxygen mask you will want to get for your setup. You will want a regulator that goes up to 25 LPM with a barb fitting for the tubing to attach to it. Mask: http://www.clusterheadaches.com/ccp8/ 540 Regulator for larger size tanks (M, M60): https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 or https://www.amazon.com/Regulator-CGA-540-Responsive-Respiratory-120-1205/dp/B07ZS9JK7P/ref=pd_lpo_sccl_1/135-6324550-2316945?pd_rd_w=zpYOS&content-id=amzn1.sym.116f529c-aa4d-4763-b2b6-4d614ec7dc00&pf_rd_p=116f529c-aa4d-4763-b2b6-4d614ec7dc00&pf_rd_r=K8YQYE2NB64K5QQ6HF88&pd_rd_wg=ocBIu&pd_rd_r=c4fe90c6-deed-4591-8360-0bc059358ef9&pd_rd_i=B07ZS9JK7P&psc=1 Standard size regulator for smaller tanks (E tank):https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator or https://www.amazon.com/Medline-HCS8725M-Oxygen-Regulator-Latex/dp/B00BLQKKQQ/ref=asc_df_B00BLQKKQQ/?tag=hyprod-20&linkCode=df0&hvadid=167135816306&hvpos=&hvnetw=g&hvrand=18085319068956249510&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9007275&hvtargid=pla-500449369392&psc=1
  16. I know just what your feeling. I have had so many people in my family do so many things to try to and succeed in helping me out in different ways. Still I have times I have that same lonely feeling. Comes and goes once or twice a year for me but it does go. It sucks almost as much as the clusters themselves but just keep positive and make sure you tell your family you appreciate the help and love them, explain your feelings and im sure they will try to understand. Stock up on as much of that oxygen you can and try not to let it run out and you will pull through this. I am sure you know from poking around on this site that we have all had issues like this at one point of another and we are all here to support each other. For me reading, asking questions and not being afraid to try new things has kept me from going nuts.
  17. Dani, You need your blood tested for your current levels of: Calcium, D3, and PTH. This will give you a base line of what your starting out with and have something to compare to after a few months. You will want to have blood work done every few months.
  18. I tend to keep my hand on the regulator as I am using my oxygen and adjust it up and down as needed. I try not to let the bag overfill to the point the oxygen is coming into the mask before I am ready for it. I change my breathing up almost hit to hit as needed. Sometimes long deep breathing works and others short faster breathing helps me better. It kind of depends on the situation and how fast I get to the 02 tank and get started. I will also chug down a 5hr drink to give the 02 a jump start, grab an ice pack and find a effective pressure point to apply that to it, Also changes per hit, and adjust my seating position. I am a sitter not a walker so stretching out my back or doing a crunch or both will change the effectiveness of my 02 sessions. By the end of the party I am breathing at a normal rate at maybe 4 or 5 lpm on the regulator.
  19. Great to hear your back on your feet Denny. Hope all goes well for you in the coming weeks!
  20. Here is the info for Air liquide in NS Canada Not sure how close you will be to that but I just did a google maps search of oxygen supply companies. Air Liquide Address: 1030 Barker Lane, Westville, NS B0K 2A0, Canada Hours: Closed ⋅ Opens 8 AM Phone: (833) 935-3252 Province: Nova Scotia
  21. I have called travel agencies and asked them to recommend a medical supply company they use for travel to areas. They supply wheelchairs walkers and oxygen needs to travelers all the time and can maybe hook you up with a company.
  22. FunTimes

    O2 kit

    Yep, that is the king of o2 masks, could be the queen also I guess.. Depends on how you name it.
  23. when I was tracking everything I went old school with a pad and a pen. Filled a few notebooks then got fed up with it and threw it all out. Only track things now when I am in a clinical trial and they normally give you some sort of tracking device for it.
  24. Welcome to the club that is not so fun to be in! but we can get you figured out and in a better place. What have you done so fat to treat the cluster portion of your misfortune? Being a welder gives you an edge as you should be familiar with oxygen and how to obtain it. You can read all about that here on this site. Other things you will want to read up on are the D3 regimen, % hour type energy drinks and check out the busting stories section of the site. Ask a tun of questions and everything will hopefully get much better for you physically and mentally.
  25. if you can get the prescription you can call all the oxygen supply houses in your area and tell them you have no insurance and will self pay. It turned out to cost me less money doing it this way. you do not need anything other that the full tanks from them as you will want to buy your own high flow regulators online and a cluster mask that allows more 02 intake and no outside air.
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