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I saw a neurologist recently for ongoing headaches after being advised by the hospital at the start of the year when I was hospitalised for a 4 day headache with vomiting spell.
I've had several different investigations done and sleep study done showing OSA/obstructive sleep apnea. I'm not fully convinced it's the only cause. Before seeing the neurologist I did the sleep study authorised through my GP and did a 2 week APAP machine trial. It didn't go well and I felt worse.
And, my neurologist wants me to get back on the sleep apnea machine and sent me to his sleep dr he see's as he has sleep apnea himself. So I'm going to try it again and try a few different masks but I know I've read posts in the past where cfsers have said that the sleep apnea machines had no real improvement in their cfs symptoms.
I'd like to hear from any who has had experiences either way, greatly appreciated.
Also I'm finding some conflicting information. My neurologist basically saying weightloss doesn't really help sleep apnea. But the respiratory specialists/sleep dr says weightloss does. So far since January I've lost 23kg which I contribute mostly to stopping lyrica. It's a great drug for pain but no matter what diet you eat you just slowly put weight on. I generally eat low carb so that with stop lyrica has helped. Also I replaced lyrica with toprimate as a headache preventer and it's know to help lose wt, possibly through increasing leptin sensitivity.
So the sleep Dr seem to ignore what was helping me lose wt and said the only things that help weightloss are ozempic, the new wt loss drug or wt loss surgery. But why when what I just told her is working well, without trying. The other conflicting thing is my neuro who says wt loss doesn't help OSA but can help general health etc agreed with me that toprimate helps with wt loss.
I hate the sleep apnea machines but if I lose more wt, I hope I eventually won't need it.
Both drs aren't totally ignoring cfs/post viral fatigue but basically saying they don't know very much about it. My neurologist is saying to just take things one step at a time and see what happens.
To get to see all these drs etc is starting to cost me a small fortune, it's starting to add up, as I have to go through the private health system here in Australia as the public system, it just wouldn't happen and health insurance is too expensive and your still a significant sum out of pocket.
Almost forgot, started botox injection tonight for headaches. Also interested to hear from any cfsers who have found them useful.
I want to be hopefully but I'm not confident. I just think they are missing any immune/infection issues with cfs.
I haven't had a shingle outbreak since the beginning of April, which is abit of a record for me![Thumbs up :thumbsup: 👍](https://cdn.jsdelivr.net/joypixels/assets/7.0/png/unicode/64/1f44d.png)
Grateful to hear cfsers experiences with sleep apnea machines and botox for headaches.
Cheers
I've had several different investigations done and sleep study done showing OSA/obstructive sleep apnea. I'm not fully convinced it's the only cause. Before seeing the neurologist I did the sleep study authorised through my GP and did a 2 week APAP machine trial. It didn't go well and I felt worse.
And, my neurologist wants me to get back on the sleep apnea machine and sent me to his sleep dr he see's as he has sleep apnea himself. So I'm going to try it again and try a few different masks but I know I've read posts in the past where cfsers have said that the sleep apnea machines had no real improvement in their cfs symptoms.
I'd like to hear from any who has had experiences either way, greatly appreciated.
Also I'm finding some conflicting information. My neurologist basically saying weightloss doesn't really help sleep apnea. But the respiratory specialists/sleep dr says weightloss does. So far since January I've lost 23kg which I contribute mostly to stopping lyrica. It's a great drug for pain but no matter what diet you eat you just slowly put weight on. I generally eat low carb so that with stop lyrica has helped. Also I replaced lyrica with toprimate as a headache preventer and it's know to help lose wt, possibly through increasing leptin sensitivity.
So the sleep Dr seem to ignore what was helping me lose wt and said the only things that help weightloss are ozempic, the new wt loss drug or wt loss surgery. But why when what I just told her is working well, without trying. The other conflicting thing is my neuro who says wt loss doesn't help OSA but can help general health etc agreed with me that toprimate helps with wt loss.
I hate the sleep apnea machines but if I lose more wt, I hope I eventually won't need it.
Both drs aren't totally ignoring cfs/post viral fatigue but basically saying they don't know very much about it. My neurologist is saying to just take things one step at a time and see what happens.
To get to see all these drs etc is starting to cost me a small fortune, it's starting to add up, as I have to go through the private health system here in Australia as the public system, it just wouldn't happen and health insurance is too expensive and your still a significant sum out of pocket.
Almost forgot, started botox injection tonight for headaches. Also interested to hear from any cfsers who have found them useful.
I want to be hopefully but I'm not confident. I just think they are missing any immune/infection issues with cfs.
![Crossed fingers :fingers_crossed: 🤞](https://cdn.jsdelivr.net/joypixels/assets/7.0/png/unicode/64/1f91e.png)
![Thumbs up :thumbsup: 👍](https://cdn.jsdelivr.net/joypixels/assets/7.0/png/unicode/64/1f44d.png)
Grateful to hear cfsers experiences with sleep apnea machines and botox for headaches.
Cheers