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  1. Like
    aneurysmalex got a reaction from CHfather in Conference takeaways?   
    1.Restarting the D3 regimen because I am stupid and stopped.  My test came back with 30.2 so I am ready to boost it to 100.
    2.I am going to try the new O2 steps of hyperventilating before I start it
    3.Going to talk to Dr. Plato about DHE and also the other options for the ATI Stimulation
    4.Starting back on 5-meO-DALT after I learned that the maintenance dose should be taken every 5 days instead of once a month  
  2. Like
    aneurysmalex got a reaction from mit12 in Welding Oxygen   
    I bought a 100 tank filled with O2 for $274 and refills cost around $20 on it from Welding Supply in Louisville, KY.  I also have another 100 tank that I got filled. from a welding supply company.  I have the Harbor Freight valve and the Cluster Buster mask.  I swap tanks with them instead of filling mine which means that all the recerts are done by them.
  3. Like
    aneurysmalex got a reaction from spiny in I think Pink Floyd suffered from CH :P   
    Listen to : Comfortably Numb  
    Brain Damage   
    Hopefully you will understand
  4. Like
    aneurysmalex reacted to CHfather in Cymbalta for CH control   
    It's really hard to imagine that the prodrin and advil are helping you. I guess you would know.  The verapamil should help, and it's nice that the cymbalta does.  Oxygen is the #1 medically recommended abortive for CH attacks.  Many, or most, people here will tell you that it's a life-saver for them.  It's not completely surprising that doctors haven't recommended it, because when it comes to CH, most doctors don't have a clue.  This document about oxygen might be informative for you:  https://clusterbusters.org/oxygen-information/
    Many, many people get very good results from the vitamin D3 regimen.  I think you should consider it.  https://clusterbusters.org/forums/topic/1308-d3-regimen/
    Also, many people find that drinking some kind of energy shot or energy drink at the first sign of an attack will often reduce the severity of the attack, or even abort it. Five-Hour Energy or one of those shots can be quite effective.
    Melatonin at night, too.  Starting at 6-9mg and working up as needed.
    Some of these things might help.
  5. Like
    aneurysmalex reacted to dgman77 in Help needed   
    We currently have 3 E tanks( 2 foot tall) and the low flow regulator.
    Called a bunch of places about the bigger tanks. I can't find anyone who carries them or is in our area.
    We might have to bite the bullet and just use the E tanks.
    I can get them everyday Mon-Fri) , as many as I need.($10 a piece, but you can't put a price on relief)
    Set the mask up, need more O2 flow. Fills slowly,But we understand why it works so well.
  6. Like
    aneurysmalex reacted to dgman77 in Help needed   
    Doctor called today. His blood test was 25, (that was after 2 days of 10,00mg D3). She feels better about him doing the D3 regimen now that she knows he is low.
    The big O2 tanks are still not in yet.
  7. Like
    aneurysmalex reacted to mit12 in What if you could have no headaches?   
    I remember going in for an MRI and I told my mom I hope they find a tumor, my mom started crying. no one that does not have these can understand what we go through.
  8. Like
    aneurysmalex reacted to MoxieGirl in Clusters + Heart Rate + Apple Watch   
    I recently bought an Apple Watch (which is really cool if you're a Geek like me). I also downloaded a pretty decent Sleep App for it that monitors your sleep patterns. As sleep (or the lack of) is a trigger, I like to keep an eye on things. This sleep app (Sleep Pulse 2) is quite impressive, and thanks to the heart rate monitor on the watch, is able to track one's heart rate during the night.
    Below are my 2 most recent heart rate graphs. I clearly remember being woken up early this morning with a mild cluster, and was quite surprised to see, at about the same time, my heart rate had shot up to 113 beats per minute!!
    So, I began looking at previous nights, and there are also some spikes (102 bpm).
    I'm going to keep monitoring it, and try to capture my heart rate when I get an attack during the day to see if there is actually a direct correlation. But thought it interesting, and if someone else has one of these smart watches, if they've noticed anything similar.


  9. Like
    aneurysmalex reacted to CHfather in My D3 Regiment with Links   
    Others here might have an opinion about your list, but I'm pretty sure your best bet is to ask "Batch," the originator of the regimen. He's great at responding to inquiries like this, but he doesn't show up very often in person at this board.  I was told that he recently responded to a PM from here, so you can try that from here: https://clusterbusters.org/forums/user/17422-batch/  If he doesn't respond to you, let me know.                                                                                   
  10. Like
    aneurysmalex reacted to ClusterHeadSurvivor in What if you could have no headaches?   
    hard for em to answer since I already had surgery that didnt work
  11. Like
    aneurysmalex reacted to Mariahw in What if you could have no headaches?   
    I don't think you're an idiot at all. There's a reason they're nicknamed suicide headaches. I'm lucky that mine are random and rare, but they happen enough to be a contributing factor to not having guns in my house. My son was born via emergency c-section, the kind of surgery where they put you under anesthesia, and I woke up in the middle of it. The pain of that experience, I don't have words for. But the pain of a cluster headache? I'd have that same c-section again over and over again if it meant I'd never have another cluster headache. You're not an idiot or being melodramatic.
  12. Like
    aneurysmalex reacted to Bejeeber in What if you could have no headaches?   
    My sentiments are in line with CHF's - there was a time when I would have answered yes to the poll questions, but I have been fortunate enough to have had the CH under control for a good while now, and I'll hope that's something that could still happen with you also.
  13. Like
    aneurysmalex reacted to CHfather in What if you could have no headaches?   
    In your circumstances, I think you are not an idiot for thinking those things, and I am very sorry that you are suffering so much.  Most people here have found one way or another -- through busting, oxygen, D3, melatonin, energy beverages, and even some pharmaceutical medicines -- to not be in the same awful situation as you.  Are you interested in exploring any of those things, or do you feel that you have exhausted all the possibilities?
  14. Like
    aneurysmalex got a reaction from dlnmerced in Good tidings / Assist with 5MD   
    Hey everyone   How have you all been doing with your Clusters?  I have been doing okay with them because they are usually about a 5 to 7 on the pain scale and have been recurring about 3 times a week.  I still cannot shake that constant headache that I have.  I also noticed that I cannot speak clearly after I suffer from one, I have a stutter and I cannot make full sentances. 
    Every time I have a cluster, I try and remember all the people who I met that are in the same boat as me.
    I cannot remember the name of the gentleman who helped me with the 5 meo dalts at the conference but I can be reached via email at kingdrakos@aol.com