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ClusterBusters

Mle

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Everything posted by Mle

  1. 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
  2. Mle

    Registrate your pain

    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,!
  3. Mle

    Beyond Medication

    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 candidate for busting. As far as social isolation, I used to completely with draw from friends but now I let them know what I'm going through and that I will be back as soon as I can. All my good friend totally get it and they just check in with a call or text once a week which is all I really want when I feel this way. It's been important mentally for me to just let those I care about know what's up. I think before when I just disappeared, they thought it had something to do with them and not me. Now, they know I love them and wish I could be more social but I just have some shit to do, but I'll be back. I feel less isolated and more excited to be done with this cycle so I can get caught up on their lives. Jobs are a real struggle. In my thirties, I was a self employed artist. I had a decorative finish and mural business along with an art gallery. I was busy as hell but when I went into a cycle I could tone down my work load. I also seemed to only get ch at night so I was just tired all day but could keep going. The recession in 2008 clobbered my businesses so I went back to school to get my degree in psychology with the hopes of becoming an art therapist. My Junior year I came down with ms and was diagnosed officially just after graduation. Classic, life happens while your making other plans. I'm grateful for my degree because it's actually kept and keeps me relatively sane even if I not able to use it. Anyway, just wanted you to know that I feel your pain. It's helpful to hear that others struggle and we're not alone out there. The only advice I can give is to be honest and share with your friends. Let them know you're not looking for a pity party, you just might not be able to join them as much as you would like, but to keep you in the loop. Good wishes
  4. 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 using o2 at the moment to get through. It helps immensely with the pain, but even if the pain is diminished it doesn't help with the fatigue. Ah, I appreciate your reply.
  5. Mle

    New - From NZ

    Great info. Thanks!
  6. Mle

    New - From NZ

    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. Sounds like you've been chronic without breaks and I can't imagine. I can't address your pain tolerance but I can't recommend oxygen enough! I also have a question about you're ginger drink. Does it contain alcohol? Alcohol is a huge trigger for me, guaranteed blistering ch and very hard to relieve even with oxygen. I love ginger but curious about the alcohol content.
  7. Mle

    Shadows and Oxygen

    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. 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 about some stuff I've seen so here goes.... OXYGEN: This is my primary go to fo sho. Ten years ago someone mentioned oxygen on the support group but I couldn't get a doc to supply what I needed. So I suffered another 3 years until I met my husband. He brought home a emergency oxygen tank from the workshop (he's an engineer). Blew my mind that it worked!! That's when my initial battle with docs began. I could give a huge rant but please, if you suffer from headaches, fight your doc or get a new one!!!!!! Go between cycles if you can and get set up!!! Getting the oxygen wasn't bad after fighting threw two docs, but getting the equipment to go with it was an on going challenge. I was able to get a script for Apria to deliver o2. Apria is a pain in the ass but the drivers are actually good guys, in my experience and definitely know more than anyone you'll get on the phone. So first get some tanks and take whatever regulator and tubing they'll give you. Next, go on Amazon and buy the right regulator. You will need a high flow regulator that opens to 15ml and high flow tubing. Very important!!!!! Never attach oxygen to your face at a high flow. Hold it under your nose, so if by chance you fall asleep the oxygen will fall away from your face!!! This method is for short term use and is why your doc and Apria will fight you on getting the equipment but in my opinion, the only way oxygen is super effective. If your oxygen is covered by insurance, keep the script current! It's worth paying the copayment every month so when you need the o2 its there. Now, I have questions if anyone has some experience in the following I would so appreciate to hear from you. Shrooms?? How much vitamin d3? Does melotonin work and how much? Caffeine and how much? When I exercise vigorously it seems I can bring on a ch in about 30 minutes after, anybody else? Anyone have multiple sclerosis also? I' ll be so grateful for any responses and I'm happy to share in more detail any of my experience if anyone would like to know. Thank you all again.
  10. Mle

    Not sure and need advice

    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 cluster headaches worse. I know caring for a parent is seriously high and chronic stress. Hang in there.
  11. 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)
  12. 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 away and you might abort the ch or at least get rid of it faster. Also, stay on the O2 for another 5 minutes after the headache ends. That sometimes helps if I'm getting them back to back. Hell yea, to any research or exploration you can do in school for ch. Let us know what you discover, I would looooovvveee to hear it!
  13. 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.
  14. 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 cycle until now. He doesn't take insurance because for $200 you get his full attention for over 2hours. I didn't make an appointment with him for cluster headaches because I really dont think he can do more than what I already know. Next appointment though I'll ask about verapamil and imitrex. I'm already on ms medication and there might be conflict but we'll see. I don't know if you've dealt with Apria before but it's amazing the incompetence. I've got a 7 year history but I'll just give you the latest. Called in for oxygen and another high flow regulator because mine sprung a leak. Mind you, this is their high flow regulator. They said I needed an updated script for the regulator but could still deliver o2.(????) I called my md who knows I have a history of ch to get the high flow regulator. They act like they have never heard of such a thing. I educate the nurse, which seems like the docs job but whatever. She calls it in to Apria and let's me know. I give it 24 hours,knowing how Apria works. I call Apria and they say it will take at least a week to process. When I try to explain my situation (for the hundredth time), I was told they don't carry high flow regulators. I'm used to this, if the people at the call center don't know something, they will lie to get you off the phone. That's when I order from Amazon which delivered in 24 hours. Gotta love Amazon. But it gets better, 10 days after this conversation, I get a call from my doctors office saying they're still trying to get the regulator, but Apria wants to know how many hours a day I use it. This is why I don't even try anymore. I simply don't have the energy. I get what I need AROUND and INSPITE of the so called medical community. And the really sad part is that these are the best docs I could find. I'm on all the advice you've given and so incredibly grateful to you!
  15. Mle

    OXYGEN!!!!

    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!
  16. 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 through my mouth. Sounds like I'm doing the opposite of the mouth breather. But I did like the mask because it didn't dry my nose. I'm going to order the mask you recommended and I'll let you know how they compare. As far as the d3, I'm going to let my neurologist know that I want to up my d3 just while I'm in a cycle to see if it helps. Keep him in the loop. I really like him because he works with traditional therapy but also is very open to nontradional therapy as well, as long as it's not harmful. Good guy if you know anyone in the Denver metro area who needs a neurologist. Also, have you heard of putting capcasin in your nose on the side of the ch. my oxygen delivery guy said he had a friend who snorted tabasco, yes Tabasco sauce, a couple times and stopped her ch cycle. I looked it up and apparently there was a study done where people put capsaicin in the noses to see what happened. After 5 days they hardly felt any pain. It was believed that the nerve that causes the ch pain had dumped all its pain causing juice and it takes a couple weeks to build up again. Anyway, my description is lame but you can look it up. And yes, I snorted Tabasco, which I do not recommend obviously. I was dripping Tabasco sauce for 12 hours. It was awful. Then I did some reading, which I need to do first more often, and found that small amounts of capsaicin put on a qtip would work. I did it for a few days but then had a massive ch episode. I had so many ch in one night I lost count and then a few during the day, so I stopped. Now I wonder if, like people mentioned with mm that they might get worse before they go away. Anyway, do you have any thoughts on this? I'm sorry to keep pestering you with questions, it's just that I've never had anybody who has had a clue into what this is like. Now that I have ms, the ch makes my ms fatigue so awful. I just start to feel a little crazy. I try to stay as positive as I can because I know how hard it is for my husband and son to watch me struggle, but sometimes it's so hard not to feel so damn angry, sad, frustrated. With that said, I also thought of something else. My neurologist just upped my antidepressant celexa to 40mg. Have you heard of antidepressants making ch worse? Thank you for your patience, I can't tell you how helpful it is just to have someone answer a question!
  17. 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.
  18. 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 Optimask, I'm all over having and trying anything. Another question I have is altitude. I live in Colorado for the past 20 years. My husband and I have been considering moving closer to family in New Hampshire. Have you ever heard of cluster headaches being helped by moving to lower elevation?
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