FunTimes

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.

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.

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.

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!

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.

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

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.

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.

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.

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.

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

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.

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.

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.

Great to hear your back on your feet Denny. Hope all goes well for you in the coming weeks!

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

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.

Yep, that is the king of o2 masks, could be the queen also I guess.. Depends on how you name it.

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.

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.

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.

Could also try real Frankincense oil drip on the tongue, that has helped me just as good as the energy drinks.

Monster, redbull, 5hr drinks all can help and tend not to keep people awake when used for clusters. You can also try strong coffee at room temp, ginger tea, candy or chew fresh. feet in very hot water and ice pack on your head on the cluster side. hyperventilating like you have your oxygen tank on full blast. Vigorous exercise like pushups, running jump n jacks. Any one of the things listed can help but can also make it worse, only you know your system but try it all out and find something that will help out as much as you can. Best of luck to you

I have thought about this as well. I have never taken it alone, only in energy drinks. I think the addition of the caffeine in the drinks along with the taurine is what helps but I have never heard of anyone trying it alone as a supplement along with the D3

after using this a few times It does work. thing is when dealing with pressures you will only be able to equalize the pressure in both tanks. I am using a M tank to refill E tanks and the first one I get about 3/4 of the E tank filled the second E tank off the M tank is down to about half. It is better that nothing when they stop refilling your E tanks and you need something portable.