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Everything posted by Mle

  1. I don't know if this is helpful but I journal and these are the catagories : ch, drugs, activity, food, other. So for example under ch, I would put when, how bad, how long. Under drugs, I wrote on my first post my list, then "no change" if I'm not experimenting. Activity is helpful because I definitely seem more prone to attacks if I get overheated or stressed. I'm looking into possible food triggers, thus the food category. Finally, I like an other section for any thoughts on the day. I.e. Mood etc. Love the app idea,!
  2. Thanks for the post Leonhart. I'm struggling with all the issues you've mentioned. I have multiple sclerosis and ch. I have a lot of fatigue with the ms already and when I'm in a ch cycle, I'm barely moving. It's like my life just has to be put on hold. Currently, im exactly 60 days into a cycle. My husband is incredibly supportive but I can feel his sadness wanting his playmate back. I'm on an antidepressant and before this cycle started, a regular at the gym. Working out helps with ms symptoms. However, now, working out is a huge ch trigger. I also take tecfidera for my ms so I'm not a candi
  3. Hi Ricardo, Thanks so much for the in depth reply. You've found more info than I have been able to uncover. Yea, I have a weird combo going on. I started ch 15 years ago when I was 30 and ms 5 years ago. Currently I'm exactly 60 days into a cluster and feel pretty bummed. I have a lot of fatigue with my ms and the ch knocks me on my butt. It's a good day when I have enough energy to shower and make dinner. Wahoo. I'm taking 40mg of celexa which I'm not willing to go off of to bust. I also take tecfidera for my ms. I'm a woman on the edge. Ha Im going to look into the links you posted. I'm usin
  4. Hi all, I'm just throwing this topic out there to see if anyone else has this combo. I've had ch for 15 years and was diagnosed with ms 4 years ago but had symptoms for a couple years before that. The ch makes my ms symptoms worse which sucks. Anyway, I believe both ch and ms are malfunction of the immune system so I was wondering if anyone else had this combo? Thanks
  5. Great info. Thanks!
  6. HI Leonhart, I'm new to this website but so excited to be a part of a great community and wealth of info. I have found ch has really been very isolating and frustrating. I didn't know people could get ch as children ( I started at 30) and I'm so sorry for your experience but really happy that tonic and other parents of ch suffers can benefit from your advice so thank you. I just have to say oxygen was a life saver for me and I'm not exaggerating. I have had ch for 15 years, the first 7 completely untreated and it was hellish for about 2 months a year. I dreaded having them the other 10 months.
  7. I have had the same result. I'm an oxygen junkie.
  8. Oooooo, you go Bthr22, can't wait to hear about anything you find out! I genuinely sorry you're possibly suffering with ch but I'm glad you're on our team.
  9. I'm really sorry you're going through this but glad you found this sight. If I were you, Ideally, a doc or neurologist, hopefully one that has a clue, just eliminate other possible culprits. But if you can't do a doc right now, I would get some oxygen and try that. I believe that cluster headaches are the only head aches that are relieved by oxygen so you'll have an answer at least. Although, some people o2 doesn't help but it's definitely worth a try. If you get relief, hallelujah, if not, you'll know you need to get in with a doc. In my experience dealing with high stress situations made my
  10. what a night, my head feels like I've been in a boxing match. Thanks for the great info, I'm on it. Oh, by the way, I can't remember where I saw it but you can use a cannula as a mouth breathing tube. My saving grace last night. Just thought you might like to know. Thanks again. (Yes, from nose to mouth, ewwww, ha ha)
  11. Hi Bthr22, Just a thought. While you're doing all the above maybe your dad might have access to an emergency oxygen tank you could try out next time you get a ch. My first experience with oxygen was from a tank my husband brought home from the workshop at his office. He's an engineer. It wasn't even high flow but I used it at the first sign of a headache and it worked! I was then armed with further evidence when I went in to see my doc with this info and flat out wouldn't leave the office until I had an O2 script. When you get oxygen, don't wait until the ch is full blast. Get the o2 right awa
  12. Hi again, Up in the middle of the night again. Had a few days reprieve and thought I might be done with this cycle. Nope, two biggies in a row. Ugh I have been looking for the right mask/tube combo. On this sight they're out of the cluster kit and I tried Amazon but I can't tell what will work. If you get a chance, would you please look on Amazon and let me know what I should order. I know that's a big request but I would really really appreciate it.
  13. I read your post and appreciate your outrage on my behalf, but I can only muster a sigh. I could go into all the absolute nonsense, the heated calls, the begging, the absolute callousness of the medical community but I'm sure it nothing you haven't heard. I found the only way to get things done is to be your own advocate and that often means getting what you need when your various doctors fail time and again. My neurologist is relatively new to me because the past three neurologists were assholes. He is one of the best in the field for multiple sclerosis, but I haven't gone through a cluster c
  14. Mle


    Hi all, I'm new to this website, but so impressed with all the great info. But what has amazed me is how many ch sufferers don't know about oxygen or don't have it! I'm so damn sorry that the medical community doesn't have a f-in clue when it comes to cluster headaches. Please Get Oxygen if you don't have it by any means possible. If you need help, post that you need help. I've had ch for 15 years and oxygen for the last 7. It still sucks but nothing like not having oxygen. If you'd like to hear my story, just let me know. I'm just going to keep this post brief and to the point. Get oxygen now
  15. Wow, that's interesting about the cannula. I used to use a mask, but I was chatting with the Apria delivery guy and he said that I had the wrong hose that only let 4ml come through the tubing which would explain the hissing sound and I would need to hyperventilate to have it work. Sometimes the ch would be gone in 10 to 15 if I caught it early, but sometimes I would need a half hour or it never fully went away but made the ch hurt less. He gave me "high flow tubing that allows 15ml through" but it came with the cannula so I went with it. So what I do is breath in through my nose and out throug
  16. Just another note that I thought I should mention. Unrelated to ch, I was taking 10,000 d3 for my multiple sclerosis directed by a neurologist. That particular year, I didn't get ch. I changed nearologists concerning my ms and he reduced my d3 to 4000. And now I'm back to ch. Hmmmm, I'm going to follow the d3 advice, at least while I'm in a cycle and see what happens. I'll let you know.
  17. Thank you for getting back to me. I feel a little foolish, I was so excited from reading all the conversations, I didn't check out the whole website before I jumped in with my questions. I've since read all the info, wow. As far as the oxygen, I've been using a nasal cannula. That way I can direct the flow to literally blow up my nose with force. I found that it work faster than the mask and I don't have to have the regulator up to 15 unless it particularly bad. Only down fall is it dries out my nose fast, but that's such a small issue compared with the relief. However, I will check out the Op
  18. Hi, I'm about 2 months into a cycle. I've had these ugly head monsters for 15 years, started when I turned 30. I also have multiple sclerosis, diagnosed 4 years ago. I get cluster groups once or twice a year that last around 2 months give or take a couple of weeks. Oh, I'm also a woman. I think that's all the basics out of the way. I'm so amazed by this website!!! Congrats to every member for all the encouragement and advice. Last time I tried a website support group was around 10 years ago, not such a great experience so I didn't try again until today. I'm here to share what I know and ask ab
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