FunTimes

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.

Going off your screen name and the Dr your seeing now I am guessing your in the NE area. If you are in the Philly area I do have a good DR I would recommend at Jefferson. He is very familiar with this site and is willing to work with you on how to best treat your situation. Get that oxygen setup now so you are ready for the next round to land if and when it does. D# and everything else CHfather sent to you will get you started and in a good place. Emgality has helped some but from what i remember it was 3x the dose of migraine users, I had 3 100mg auto-injectors that I had to take once a month. I gave it 3 or 4 months and didn't help me much.

Welcome to the club.. Let us know what you are currently doing to abort your attacks and preventive measures your taking to keep your clusters away. We have people all over the world here doing all types of different things so look around and ask questions.

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.