FunTimes

Not sure what a "Normal" life is anymore. My new normal is to deal with things one day at a time and adjust. I know I am going to get beat down with a massive cluster at any time of any day so I am always ready to fight back with whatever I can. I keep oxygen in the car at all times, I have it in my office at work keep a triptan injection near by as much as I can and a 5hr energy drink in my pocket. I can no longer drink alcohol so my new norm in a social aspect is water and coffee. I am not shy or hiding my clusters so when someone who does not know what I deal with and comments about not drinking or avoiding some sort of smell I tell them how it is. I can no longer burn a candle, my wife can no longer ware perfumes and depending on how my clusters are on any given day I need to avoid other scented things like cooking dinner. This is my normal life, not great but it is what I have so I embrace it and know things could always be worse. The new normal and I still love it.

I would thing a business card type note or description as to what you ware going through and how others can best help would work best. Others here on the site have talked about this type thing in the past. I thought about putting a sign in my car for when I am huffing oxygen to keep the concerned citizen from knocking on the windows trying to help. You can not blame people and feel thankful that strangers that are willing to help others still exist in this world.

In the winter time I sometimes can trigger myself breathing cold air in through my nose. Makes no sense because in the summer breathing in cold also helps abort a cluster.. AHHH, the life of a clusterhead! Stuffy and or runny nose is also a common side effect of an attack

Best of luck to you and hope that fixes the problem. If not we will still be hanging out here at the head bangin party for ya. Save your cup, we have free refills!

This is so common, I had a maxillofacial surgeon tell me I had clusters after a root canal did nothing to help me. You never know what type of doc your gonna get until you meet them for the first time. My doc not only knows clusters but also looks at and supports this site. You may luck out and get a clear diagnoses and find out its not clusters (that would be ideal) or you may end up having clusters(not so much fun) but at least you will know what path you will need to take. Your above description sounds like clusters to me for sure, you also seem to have a somewhat upbeat attitude about this knowing the type of pain your having. Keep your head up and just take it one step at a time and we are all here to help answer any questions you may have.

Ask here and ask at your appointment. I bet you we will have a better explained answer than the doctor.

I have to fight with my oxygen company often as well. I keep calling and make my way up from call center to local manager and now I have the reginal managers number and we are on a first name basis.. Don't give up and call until you get what you need. I don't know your situation but I found that paying out of pocket in cheaper for me and also better for the oxygen company because they do not have to deal with the insurance approvals and things like that. I just pay my bill on time and that keeps them happy. Tank supplies at my distribution center get depleted and I have issues getting the M size tanks but getting to know the delivery driver and being kind to him went a long way with me building up a nice stash of "extra" tanks. A cold bottle of water, fresh veggies from the garden or a few bucks goes a long way with the delivery person! Find a way to get someone on the phone that is willing to listen to you and work to get you the tanks you need. as long as they are getting paid for each tank what do they care how many you are using. The supermarket doesn't tell you you can not but 10 gallons of milk a week do they? They just want to sell it and make the profit! Dont take no for an answer and move up the chain of command until you get it. I am not in your area so I do not have a suggestion for what company would be better for you sorry.

You should find what you need on this site. https://vitamindwiki.com/Cluster+Headaches+treated+by+high-dose+Vitamin+D%2C+etc.+(interview+and+transcript)+-+Feb+2022

I also get pain in the upper jaw below my eye like a tooth is being torn out. It will move around from my ear to upper and lower eye. Welcome to the club.. Read up and ask as many questions as you can think of, We are all here to help each other and no matter what your feeling someone here has most likly dealt with it and may have a trick for you to make it just a little better.

I did a clinical trial for this a few years ago with no major improvements. But that is not to say it will not work for you. If I remember correctly I was in the office for about an hour or two each time with the infusion lasting maybe 40 minutes?

When getting your oxygen fight for what you want (E and M size tanks) and take what they give you. You will most likely need to buy your own regulator and mask. After you start getting your delivery get to know your driver and work deals out with them. You will want to build up a nice little stash of extra tanks if you can. Here are a few links to regulators and the mask you will want to get. 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 Standard size regulator for smaller tanks (E tank):https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator You will want the BARB outlet type for your hose connection

I would say you should be safe after 7 days. Every clinical trial I have done required me to be off any steroid for at least 5 days prior to the start.

When doing the study at Yale I was told not to change my Verap dose, it was about 360 at the time. If they are not asking to discontinue use I would guess that at least up to 360 a day would not interfere with busting. I have taken MM, seeds ad L all at the same time as my daily Verapamil and have definitely felt positive effects of the alternate meds. I am chronic and have yet to successfully bust out of a "cycle" totally but I do no that dosing when things get bad has helped me get to the next day

Update to this just for notes.. I went back in for another infusion last Monday and Tuesday, only 2 days of treatments this time. No clusters after the first day. I think this did help the last time as it got me out of a bad spot and I did have a few multi day cluster free breaks. they did creep back up to about 2 or 3 a day so I scheduled this last treatment. I have not had to use any triptan or the DHE injections they gave me for home use. I think maybe this time around I will mix in some alternate medications to see if I can just get on top of this crap and keep them suppressed longer.

Is this a constant pain with no pain free time at all? This has been reported by others as well Were you using the proper non rebreather mask and flow rate up around 25lps? Has happened to just about everyone on this site, We are all here to help you out at any time of day or night! Great place to vent. A good test that works for most of us is drink a beer- get a attack. When in cycle for episodic and any time for chronic. Some are lucky and can drink with no effect but it is still a good test. I does not matter if you get one a month or 5 a day, it all sucks and everyone has the right to talk about it. Spill your guts here and we will help clean up the mess