kmel2 Posted October 3, 2021 Share Posted October 3, 2021 Hi all, I was diagnosed with CH in 2016 and was utilizing home-based oxygen therapy (Oxygen concentrator 7L/m) back home. But I moved to Toronto recently and I'm having a really hard time finding a neurologist, getting O2 prescription, etc. I'd really appreciate it if someone could recommend me a doctor in Toronto (preferably in Downtown) who has experiences treating CH patients and is willing to prescribe O2. And for those of you who got O2 prescriptions in Toronto, would you mind letting me know the vendor and the cost? (My health insurance would probably not cover it but I'm desperate to get oxygen because it is the only thing that seems to help me and shorten the duration of my attacks) Thanks so much for reading and for your help! Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 4, 2021 Share Posted October 4, 2021 There once was a recommended doctor list, including Canada. It was pretty old, but I thought better than nothing. Does anyone know if it's gone now? Needless to say, I hope you get some good, direct advice here. You might also try some of the Facebook groups devoted to CH, just to expand the possibilities. One that was founded by some former members here is called "Cluster headaches (trigeminal autonomic cephalalgia)," but there are more (I've heard some harsh things about the advice offered at some of the other ones, but you're just looking for doctor). It's very nice that you got relief from a concentrator and 7 lpm, but a capable doctor should be prescribing O2 from tanks at at least 15 lpm, with a non-rebreather mask. Your results are almost certain to be better with a configuration like that. Do you know about using welding oxygen? You can get it without a prescription (I think this is also true in Canada). I think I remember that some time back, someone (@Dallas Denny ??) posted something about welding O2 in Canada, but I can't find it from a somewhat superficial search. Toward the end of this post there's a section called "Treatments without O2..." Maybe something there might help you in the short run. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Quote Link to comment Share on other sites More sharing options...
kmel2 Posted October 4, 2021 Author Share Posted October 4, 2021 Dear CHfather, Thank you for your message and all your advice. Yes, I've looked at the list of recommended doctors but I thought people here may have newer information/recommendations. I will definitely check the facebook groups and the information about using welding oxygen but I hope I can find a doctor who can prescribe O2 and treat me too. Again, thanks for your support and I'm grateful that this community exists. 1 Quote Link to comment Share on other sites More sharing options...
devonrex Posted October 4, 2021 Share Posted October 4, 2021 1 hour ago, kmel2 said: Dear CHfather, Thank you for your message and all your advice. Yes, I've looked at the list of recommended doctors but I thought people here may have newer information/recommendations. I will definitely check the facebook groups and the information about using welding oxygen but I hope I can find a doctor who can prescribe O2 and treat me too. Again, thanks for your support and I'm grateful that this community exists. Not exactly close but it may be worth it if possible. She works out of polyclinique center-ville in montreal, likely one of the top headache neuros in Canada, has a few papers etc. She was my neuro in Calgary, before she decided to return home to be closer to family. Elizabeth Leroux MD, FRCPC 2 Quote Link to comment Share on other sites More sharing options...
kmel2 Posted October 4, 2021 Author Share Posted October 4, 2021 Thank you very much for your suggestion. I'm a full time student in Toronto so it might be hard for me to book an appointment with her during the school semester but I will definitely put her on my list. Was she able to prescribe you the oxygen therapy? Thanks again for your suggestion! Quote Link to comment Share on other sites More sharing options...
clusterkil3ki Posted October 23, 2021 Share Posted October 23, 2021 I used to live in Toronto and saw Dr. Kingston at the headache clinic in Women's College Hospital. He was one of the best doctors I've ever seen. You need to get a referral, and it took a couple of months to get in, but it was worth it. 2 Quote Link to comment Share on other sites More sharing options...
kmel2 Posted October 30, 2021 Author Share Posted October 30, 2021 Thank you all so much for the recommendations. Just for an update, I saw a neurologist in Toronto a few weeks ago and got a prescription for E tanks (and my health insurance covered the full cost too!.) My attacks are much shorter now thanks to the oxygen and it gives me the hope to push through the pains. Thank you all again, 4 Quote Link to comment Share on other sites More sharing options...
Freud Posted October 30, 2021 Share Posted October 30, 2021 PS 7LPM is way to low. We recommend at least 15 lpm w a nonrebreather mask but 25 lpm is most effective for most of us. 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 30, 2021 Share Posted October 30, 2021 Good going, kmel' !!!! 2 hours ago, kmel2 said: got a prescription for E tanks Just as a small note, I think it's rare for a prescription to specify tank size, so it seems most likely to me that the supplier has decided to give you E tanks. A bigger tank (M or H) is a lot more convenient for you and for the delivery people, at least if your cycle is going to last a while. You might check on what they'll give you. Ideally, an E for portability and one of the bigger ones for at-home use (at least one of each type -- with regulators and at least one mask). What you have might work out just fine, of course. So pleased that you got it doone! 2 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 30, 2021 Share Posted October 30, 2021 How many have they given you , As CHF has said you could really do with the larger M or H tanks as the E tanks only last for 20mins i get an hout out of my H tanks . Ive managered to get my oxygen nurse to prescribe me 5 H tanks and 5 E tanks so im not on the o2 supplier all the time . Make life a litte easier 2 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 30, 2021 Share Posted October 30, 2021 Kmel2, I am so delighted for you!! O2 can make life much better with CH. Now you have a top line abort method on hand!! 1 Quote Link to comment Share on other sites More sharing options...
kmel2 Posted November 2, 2021 Author Share Posted November 2, 2021 Thank you all so much for your ongoing support, I used to be on 7lpm before(which was standard in my country) but now I'm on 10lpm. Perhaps the outcome might be better with a higher flow around 15lpm, but I would listen to my doctor for now and stick with 10lpm as it's still producing positive effects and helping me ease the pain (I'm female and very small so maybe that's why). And as CHfather pointed out, it was my supplier who picked up the tank size. Apologies for the miscommunication! I'm able to keep a few tanks at home so the size is not a problem for me at this moment but again, thanks to you all for the helpful suggestions. 3 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.