thanks Beryl .. I really loved all the 'chat' especially after a couple of drinks. I would have enjoyed more if I hadnt felt the cold - so frightened my muscles will go rigid.
The main advantage is that I probably wont see these people again so dont have to analyse what I said. I like serene .. yes ..
Hi Patsy, Good for you for making a night of it! Sounds like you had a wonderful time! And getting to see and enjoy your grandchildren, well that was surely icing on the cake! Even with ataxia, we have to keep going and enjoying, as that's what life is all about, in spite of the fatigue we may feel later...,Hugs, Rose ;o)
I have ton's of fatigue when I find that I don't move much. I read an article that said that when you exercise for only 10 mins (streching, lifting weights, any movement really that's regular) the effect help you up to 2 hrs.
I told one of my ataxia friends that's in a walker about what I read and she lives by that rule now also and found it's helped her allot! She was amazed at the results and find herself doing more.
Someone told me that I was sleeping too much before (she has ataxia and sent me an article which I'm sorry I can't seem to find or I'd post it). She said sleeping more than 9 hrs makes you more tired. So now if I'm really groggy I take a power nap. It said only take 20-25 mins nap so you don't get into that deep sleep. I do and actually get more energy from it. But have you had a sleep test yet? I heard that alot of ataxia people have c-pap machines. I don't personnely but wonder about if it would make a diffrence.
I tried calfeen coffee because of the (for another reason, flaboids) that were supposed to be good for us and found that when I stopped it didn't make any diffrence in my fatigue. Now I am concintrating more on foods I can incorperate into my plan. But that's me. I think I had lots more coconut milk in my coffee so maybe it didn't work well. Eather way I've been off it now for a few weeks.
I also found that allot of fatigue for me is helped by just drinking more water, staying hydrated helps alittle but your's sounds severe I'd go see a Dr so they can test you and look at your meds. Good luck please let us all know your next steps. :0)
Unbeknown to me I had and have sleep apnea. For many years people complained about my loud snoring but I thought it was because of my fatigue caused by Friedreich’s Ataxia. Until it was observed and said that during my snoring I suddenly stop, gasp for air and then start snoring again. I got my GP refer me for a sleep study and it was conclusively proven that I’ve sleep apnea. Í was provided a sleep mask but it was too claustrophobic so I exchanged it for a nasal pillow mask. I don’t feel so tired when I awake now and don’t experience muscle spasms anymore and I don’t snore now. If you suspect similar symptoms, it’s so worth getting checked. 8 hours sound sleep is important especially for us.
Champ, that's interesting. I never heard of a nasal pillow what is that like?
Champ said:
Unbeknown to me I had and have sleep apnea. For many years people complained about my loud snoring but I thought it was because of my fatigue caused by Friedreich's Ataxia. Until it was observed and said that during my snoring I suddenly stop, gasp for air and then start snoring again. I got my GP refer me for a sleep study and it was conclusively proven that I've sleep apnea. Í was provided a sleep mask but it was too claustrophobic so I exchanged it for a nasal pillow mask. I don't feel so tired when I awake now and don't experience muscle spasms anymore and I don't snore now. If you suspect similar symptoms, it's so worth getting checked. 8 hours sound sleep is important especially for us.
A nasal pillow is much more comfortable Jeanie. It’s no comparison to a full face mask. Nasal pillow masks, sometimes called direct nasal interfaces, feature two cone-shaped prongs that rest against your nostrils to create a direct connection with the nasal airways. Preferred by side-sleepers, this type of masks reduces skin contact to a minimum. Look at to see images http://www.eu-pap.co.uk/products/masks/nasal-pillow-masks.html.
Jeannie Ball said:
Champ, that’s interesting. I never heard of a nasal pillow what is that like?
Champ said:
Unbeknown to me I had and have sleep apnea. For many years people complained about my loud snoring but I thought it was because of my fatigue caused by Friedreich’s Ataxia. Until it was observed and said that during my snoring I suddenly stop, gasp for air and then start snoring again. I got my GP refer me for a sleep study and it was conclusively proven that I’ve sleep apnea. Í was provided a sleep mask but it was too claustrophobic so I exchanged it for a nasal pillow mask. I don’t feel so tired when I awake now and don’t experience muscle spasms anymore and I don’t snore now. If you suspect similar symptoms, it’s so worth getting checked. 8 hours sound sleep is important especially for us.
Looking at that site gave me an idea for me that I'm gonna try now. I was thinking what if (as part as my night time routeen before bed) I'm gonna use the netti pot at night and when I wake I wonder if that will help too?! I'll let everyone know what my experiment does. If anyone else tries it let me know what reslutse you get too!
Champ said:
A nasal pillow is much more comfortable Jeanie. It's no comparison to a full face mask. Nasal pillow masks, sometimes called direct nasal interfaces, feature two cone-shaped prongs that rest against your nostrils to create a direct connection with the nasal airways. Preferred by side-sleepers, this type of masks reduces skin contact to a minimum. Look at to see images http://www.eu-pap.co.uk/products/masks/nasal-pillow-masks.html.
Jeannie Ball said:
Champ, that's interesting. I never heard of a nasal pillow what is that like?
Champ said:
Unbeknown to me I had and have sleep apnea. For many years people complained about my loud snoring but I thought it was because of my fatigue caused by Friedreich's Ataxia. Until it was observed and said that during my snoring I suddenly stop, gasp for air and then start snoring again. I got my GP refer me for a sleep study and it was conclusively proven that I've sleep apnea. Í was provided a sleep mask but it was too claustrophobic so I exchanged it for a nasal pillow mask. I don't feel so tired when I awake now and don't experience muscle spasms anymore and I don't snore now. If you suspect similar symptoms, it's so worth getting checked. 8 hours sound sleep is important especially for us.
Ya know Berl, I'm a clencher and didn't realise that or know that for a long time. I was told from my dentist that people with nero problems tend to clench. I had lot's of low headakes and just thoudght it was the ataxia, and lack of sleep etc, before I tried a mouth gard. It helped me stop waking up thought the night and I think I'm getting a better quality of sleep than I did before. Now I can't sleep well without anymore! So I think your so right on about mouthguards.
My dentist told me about one that they also have a devise that keeps the mouth a bit open for more air to get into your passageways! I forgot about that and how much it helps me.
Beryl Park said:
Since this product is kept in place by securing it like a mouthguard to the teeth, it might also
be useful for those of us who not only have sleep apnea but also bite their tongue during
sleep. Just recently I've woken myself up either snoring or biting, I haven't been tested
for sleep apnea but usually feel exhausted in the mornings.
For mild to moderate sleep apnea, there is what is called a mouth appliance. It is like a mouth guard. It pulls the lower jaw forward to keep the airway opened. The “sleep dentist” who specializes in making these devices told me that when we are sleeping, our tongue relaxes and the soft palate relaxes too, blocking the airways. The device helps keeping the airways opened. For some people, it is enough. I wore it for a while, but because the sleep study revealed that when I sleep on my side, the sleep apnea is not that bad, I quit wearing it and was able to train myself to sleep mostly on my side, which is easier said than done, but there are different ways to achieve this.
For your info,(I live in the USA) this device is not always reimbursed by insurance. Medicare does not cover it, but covers the CPAP. The bad part? The device costs $2,000…
Some people cannot tolerate the mouth appliance because it can cause jaws problems and every morning you have to do some “exercises” to reposition your jaw or your bite might change.
Like others have said, if you suspect you have sleep apnea, get checked.
I have begun to mime in my sleep. I was scratching my wife’s back while dreaming I was working an aerosol. I also woke the other day miming the playing of a trombone. Why a trombone? I don’t even play an instrument. I have read that Ataxia patients can do this sort of thing.
I have lot's of vivid dreams every night! I fly and walk normal. I can jump and do all the things that I can't do while awake. I love it!!!!! I even get to travel.
I find for me, reading a nightly possitive devotional just before my bed time after my prayers sets me up to have better dreams now! Much more than before I started doing this. :0)
Jeannie, I've had dreams where I move normally too, isn't it great! But, oddly I had one recently
where I had a walking stick, now I'm apparently up to date!
Jeannie Ball said:
I have lot's of vivid dreams every night! I fly and walk normal. I can jump and do all the things that I can't do while awake. I love it!!!!! I even get to travel.
I find for me, reading a nightly possitive devotional just before my bed time after my prayers sets me up to have better dreams now! Much more than before I started doing this. :0) mo