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

I did take a few rounds of Emgality, first month went ok and seemed to settle things down for me each month after it progressively got worse. I think I lasted 3 or 4 months, I can not remember. I know it was 3 shots that I had given myself in the stomach once a month all at the same time. They were delivered to my house and needed to be kept in the fridge until I used them. One thing I can remember is that if you do not let them get to room temp before using them it hurts like hell. Give it a try and I hope it works out for you. We are all so different in what does and does not help. Just gotta try it tweak it and figure out how it best works for you.

This is a new addition to the headache center at Jefferson in Philly. We are excited to announce the launch of our new clinic dedicated to Cluster/ Trigeminal Autonomic Cephalgia (TAC). This clinic is specifically designed for patients like you who suffer from cluster headaches and other TACs, such as SUNCT and Paroxysmal Hemicrania. Our mission is to improve the lives of patients with Cluster/TAC headaches through research, advocacy, and effective treatments. We will provide comprehensive care to address both your physical and mental well-being. Since these conditions are not well understood, we're committed to raising awareness about Cluster/TAC headaches and educating the public. The cluster/TAC clinic is dedicated to providing exceptional clinical care with compassion. We're thrilled to have you join us on this journey. Please reply to this message or call us at 215-955-2243 if you're in cycle. Please reference the Cluster/TAC clinic in your call or message. Thank you, Your Care Team at the Jefferson Headache Center

Dany, I think your getting your terminology a little mixed up here. You abort your attacks during the day with things like oxygen, energy drinks or whatever your go to is. You Bust a cycle with alternative medications that are covered on other parts of the forum. Shadow would be the feeling of a cluster attack coming on but does not fully set in and passes. The ramp up is the time that you have leading up to what you know will turn into a full blown cluster.

I was dealing with my brother-in law and cancer. I was doing a lot of driving to and from appointments and hospitals for him. During this time I did not have an increase in clusters, They were about the same as always. After his passing the shit hit the fan and I got crushed every day. I can only say that stress and clusters can and will react to each of us differently. I typically have less when stressed out and more during relaxed times. That also go along with getting hits as I fall asleep, lay down and fall asleep and my body relaxes about an hour into that sleep and I wake up with a hit. As far at the oxygen concentrator goes I would see if you could maybe rent one for a week and test it out. If it works that is awesome and go get one. Again everything works a little different for everyone so if it works for you stick with it!

Jefferson is a good place, been using them for a few years now. The usually have a few clinical trials going on for clusters.

I do have the DHE injections but have yet to use one as I was told they are an abortive and not as much of a preventative. I do have another infusion scheduled for the end or March but do not think I am going to keep it. things are not really that bad at the moment, I am only getting maybe 7 hits a week and not every day so in my book that's a win. I might just try to bust now and see if that works any better for me now that the clusters are kind of held down a little.

Redbeard, one thing you may want to look into is the D3 protocol. use the search bar in the upper right corner and you will find a lot of information on it. Developed by one of our members (xxx) AKA Batch. Just over the counter vitamins.

Seems like this DHE treatment finally wore off. Back to daily hits started on the 1st of February and are intensifying each day so far. It was fun wile it lasted, time to get back in the game.

Just an update on this 3 months out. Still going good. Had a 15 day break from any clusters in December, Small hit on Dec 30th lasted maybe 10 minutes with 02. Jan24th was my next hit that lasted maybe 5 minutes on the 02. Not saying this is any type of cure at all but something you may want to look into or ask about. It is a huge improvement for me.

M-Philly Let me see if I can get in contact with Dr Young and get you a number to call for an appointment. I know his scheduling is booked out a few months but it does not hurt to give it a try to get in to see him or someone from his team.