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FunTimes

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Posts posted by FunTimes

  1. 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? 

  2. 20 hours ago, devonrex said:

    people here will understand and not look at me with a combination of pity, disbelief and a weird kind of concern,.

    We do look at you that way :) 

    It is like looking in a mirror! It all sucks and it is bullshit that not many doctors take the time to even listen to some of the crazy shit we try just so we can make it to the next day only to start all over. I gave up on the math as well. I use to keep notebooks full of every attack I had and got pissed one day and threw it all out thinking what is the point? 

    Keep on venting and doing whatever you can to think positive, I know its easier said that done but don't think you alone, we have all done it at least once. 

    • Like 1
  3. 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

  4. Find someone who will listen and not hold anything against you. Someone who knows your just venting to feel better. Remember that it could always be worse ( Not sure what that would be like). I am in the same boat as you are, chronic, tried just about everything on this site and it only "just helps a little". Kind of sucks but keep at it. something may kick in and get you a week off from the hell. I tend to go off the reservation with the 5 day rule and the blocker rules when things are bad. I do whatever I think will help even if its just a little. Keep at it and keep lookin forward you will cone out of it eventually and be just fine. 

    • Like 3
  5. 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. 

  6. 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

    • Like 1
  7. 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. 

    • Like 1
  8. 19 hours ago, MagicAces said:

    pain typically worst at night, would last 1-2 days max

    Is this a constant pain with no pain free time at all?

    19 hours ago, MagicAces said:

    I was put on 300mg of Emgality. Took it for about 4 months with no real change to frequency or duration.

    This has been reported by others as well 

    19 hours ago, MagicAces said:

    Oxygen seemed to make things worse (or perhaps it was perceived as my anxiety with it not helping made it worse?)

    Were you using the proper non rebreather mask and flow rate up around 25lps?

    19 hours ago, MagicAces said:

    im sad, lonely and confused

    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.

     

    19 hours ago, MagicAces said:

    i have no known triggers…even after all these years … except maybe stress.

    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. 

     

    19 hours ago, MagicAces said:

    I know many here have far worse experiences than I do. I have no right to complain, yet I feel lost, frustrated and confused. My quality of life feels stripped for me and I feel that things have gotten worse as time has gone on. 

    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

    • Like 4
  9. 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. 

    • Like 1
  10. 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
    • Like 3
  11. 2 hours ago, Dany said:

    I've read comments from others here, saying that they might have to try to bust a number of times in one day

    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. 

    • Like 1
  12. 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! 

    • Like 4
  13. 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. 

    • Like 1
  14. 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. 

    • Like 2
  15. 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. 

    • Like 3
  16. 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. 

    • Like 1
  17. 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. 

     

    • Like 4
  18. 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. 

    • Like 5
  19. 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. 

    • Like 3
  20. 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. 

    • Like 2
  21. 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? 

    • Like 2
  22. 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..

    • Like 2
  23. 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. 

    • Like 1
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