Sleep apnea

[Guardsman68]

Hi friends

I was recently diagnosed with CA and was wondering if anyone new if sleep apnea might be linked?

[edfosho]

I think it is, not sure what research has been done about it though.

I have an SCA. I had a sleep study a few months ago and it showed I'm borderline on having sleep apnea, and I certainly feel some of the symptoms. I will be discussing this with my neurologist in a few months time.

[Guardsman68 in reply to edfosho]

Yeh I thought I’d ask just to see if anyone else had apnea it’s just I went to my scheduled appointment with the sleep clinic and the doctor had said that sleep apnea has a link to someone forms of CA. I’ve had chronic sleep apnea for seven years and have to wear a cpap at night. I’m going to do some research on this just to see how it does relate. Thanks for reply. 👍🏻

[wobblybee in reply to Guardsman68]

I’ve seen numerous posts on Facebook Ataxia Support Groups relating to sleep apnea..

[february]

Yes, I have sleep apnea! It was diagnosed when my ataxia was diagnosed 20+ years ago. My neurologist says many people with ataxia have sleep apnea! ;o)

[littlelegs914]

Hi ,i have sleep apnea and so did my late mum. We both have cerebellar ataxia. The ataxia nurse said its very common with ataxia.

[PatsyIpswich]

I don't know but I am interested x

[Thomaslondon]

My husband had sleep apnea and was referred to the sleep clinic. He trialed wearing a chest belt with a small electronic device that would encourage him to turn over. It worked but the problem was that I felt it too! Eventually you get used to the shaking bed and learn to ignore it. I hope you get some good advice from the sleep clinic.

[Guardsman68 in reply to Thomaslondon]

I use a cpap machine at night have done now for over 7 years tried a few things like gum shield nose air filters but only the cpap works but I never get any good sleep the mask always wakes you up.

[littlelegs914]

Hi, im the opposite its the best thing ever for me.the tiredness and the fatigue was not always the ataxia as i now know.im awake now to watch a good film. Ive tried nose cushions, gum shields as i broke my jaw as a teen but have settled on the quattro air.my. Blood pressure has improved so has my activity levels. A cpac machine literally gave me a new lease of life. Leeds sleep clinic is brilliant you tell them about issues you have and they help with different equipment,i hope you get sorted.xx

[Guardsman68]

Hi littlelegs thank you for reply. I agree the cpap is a great piece of kit it’s just my sleep clinic keep changing my mask. I was used the the mirage Quattro and I was ok with that it didn’t bother me that much but different mask if you don’t have it tight it leaks air so it wakes you up and the long haired general does not like being disturbed from her sleep 🤨 I also have sunct headache syndrome which doesn’t help. But since diagnosis of CA everything has gone to a new level. My sleep clinic monitor my machine remotely every couple of weeks and I get feedback on what they gonna try next either up or lower air flow but at moment it’s trial and error. But thanks for your reply. Stay well x

[littlelegs914]

My hemiphlegic migraine has improved So i hope your headache syndrome improves too. Are you linked up to the resmed website because that is brilliant at pinpointing problems with the kit and also you can see your score and leaks on the website too. Take care.

[Guardsman68 in reply to littlelegs914]

I have registered on the resmed site and it does give some really good advice they advised the water tank but I didn’t like that but I’ll keep trying everything I’m recommended to do I’m sure I’ll find a solution somewhere. Just out of interest how was you diagnosed with hemiplegic migraines and do you have any specific treatment plan. Take care

[littlelegs914]

Hemiphlegic migraine reared its ugly head when i was about 12., my older sister ,me my late mam, my son and my yonger daughter all have the same genetic pattern.we had genetic testing in Sheffield about 11+ years ago. My mam sufferd from about 11 yrs old so she knew what it was when my sister started with it and then me but we never new its name.its only through ataxia uk that we ended up in a specialist centre in Sheffield. Its rare,nothing can touch the pain we experienced there is nothing yet that helps .my mam was told that males were not affected my brother isnt yet my2 nd son is.

[Guardsman68]

I’m sorry to that you and so many of your family have or are still suffered with this horrendous type of headache syndrome. My story is I was first diagnosed with hemiplegic migraines back in 2015. My headaches started in 2010 after an incident at work left me with a head injury and concussion but hospital gave me the all clear after a CT. So I thought no drama crack on.

But very soon after I was having severe headache attacks where my left eye would droop shut it would be running constantly my left cheek and forehead would be numb with pain. This went on every day until I was taken into hospital in 2015 with a suspected stroke. I knew I wasn’t having a stroke I was having a really bad attack of headaches. So I had a load of tests and a CT it confirmed no stroke but hemiplegic migraines were diagnosed which have stroke like symptoms 😟 but an MRI was ordered just for further tests. I had MRI but no results given just the original diagnosis of HM. In 2019 I started seeing a neurologist after a lot of GP visits and the neurologist said I have an idiopathic headache type syndrome and started orbital block injections and Botox which never worked it just kept giving me bad black eyes. I was then told I had chronic cluster headaches🥴 but no I now have a confirmed diagnosis of sunct headache syndrome with injection and tearing and tirgeminal neuralgia. Present day is I was in hospital in November for five weeks on neurological ward after a bad fall and had a further MRI and I was told I had a brain lesion that was 4.5cm. I was shocked but the question was what do you do with that I was told it was inoperable as it was in the cerebella (CPA) and wrapped around a few critical cranial nerves. I asked how did I get it and I was then told it was present on my 2015 MRI and at that time it was only 2cm. But the kicker is I was never told about it in 2015 🤬

Any type of headache is bad enough but to suffer with HM or CCH or sunct is just brutal. Stay strong and never give up.

Sorry for life story 🧐