have you had these specific symptoms?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Rainmom17
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have you had these specific symptoms?

Post by Rainmom17 » Tue Nov 07, 2017 1:13 pm

In an ongoing effort to understand what things happen with me that are sleep apnea related vs. some other cause, I'd like to find out the following:
Have you experienced either of these symptoms related to having sleep apnea:
1) feeling off-balance when sitting or standing, like you're on a boat (and not just when first standing or sitting, but ongoing)
2) legs often feeling weak and shaky
I am NOT looking for advice related to seeing a doctor and getting medical testing. It's really just a process of elimination at this point. I've been thoroughly checked by doctors who haven't been able to help me with an understanding of these two symptoms I experience regularly (but not 100% of time). It may simply be anxiety. But, I'd first like to find out if they are possibly sleep apnea related, then go from there.

Thanks!

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TASmart
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Re: have you had these specific symptoms?

Post by TASmart » Tue Nov 07, 2017 1:15 pm

I have not experienced either that I could attribute to sleep apnea.
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Bertha deBlues
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Re: have you had these specific symptoms?

Post by Bertha deBlues » Tue Nov 07, 2017 1:20 pm

Rainmom17 wrote: Have you experienced either of these symptoms related to having sleep apnea:
1) feeling off-balance when sitting or standing, like you're on a boat (and not just when first standing or sitting, but ongoing)
2) legs often feeling weak and shaky

Thanks!
Hi Rainmom. I have felt off-balance for some time, but it turned out to be a benign lipoma pressing against my vestibular nerve, not related to sleep apnea. I went for balance therapy, where the focus was on strengthening my leg and core muscles, and learning which signals my brain should ignore. No surgery, no further follow up, and the therapy helped. Not saying this explains your symptoms, just that there are many possibilities.
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Sunnymuffins
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Re: have you had these specific symptoms?

Post by Sunnymuffins » Tue Nov 07, 2017 1:25 pm

Sorry, no, nothing like that here. I wish you luck in getting it figured out though!

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Julie
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Re: have you had these specific symptoms?

Post by Julie » Tue Nov 07, 2017 2:35 pm

I can't imagine how either of those two could be related to a relatively small night time obstruction of your upper airway... whatever they are due to.

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kteague
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Re: have you had these specific symptoms?

Post by kteague » Tue Nov 07, 2017 5:22 pm

I had some years of being off balance, and turned out it was mostly a side effect of medication. It affected my depth perception when looking downward and made me feel like I was falling. Avoided heights and had to use caution on stairways. My main culprit was Sinemet. As far as weak and shaky legs, have you already assessed your meds for possible side effects? When a person's sleep is really bad the muscles aren't rested and restored as they do with proper sleep. I would think it would take some pretty prolonged sleep deprivation to notice that, though I don't really know. I am not familiar with your history. If you happen to have limb movements during sleep, that's a whole different discussion. Hopefully your doctor can put your symptoms together and come up with an action plan. For clarity, did you experience both of these symptoms prior to using CPAP?

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Re: have you had these specific symptoms?

Post by Pugsy » Tue Nov 07, 2017 5:26 pm

No, never had those symptoms.
Only balance issues have been with BPPV inner ear thing which I have had pretty much all my life.

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Re: have you had these specific symptoms?

Post by zoocrewphoto » Tue Nov 07, 2017 5:55 pm

Rainmom17 wrote:In an ongoing effort to understand what things happen with me that are sleep apnea related vs. some other cause, I'd like to find out the following:
Have you experienced either of these symptoms related to having sleep apnea:
1) feeling off-balance when sitting or standing, like you're on a boat (and not just when first standing or sitting, but ongoing)
2) legs often feeling weak and shaky
I am NOT looking for advice related to seeing a doctor and getting medical testing. It's really just a process of elimination at this point. I've been thoroughly checked by doctors who haven't been able to help me with an understanding of these two symptoms I experience regularly (but not 100% of time). It may simply be anxiety. But, I'd first like to find out if they are possibly sleep apnea related, then go from there.

Thanks!

It sounds like my vertigo symptoms that I get when my ears act up. The first time was huge, a couple years before I started cpap, so not cpap related. I actually went to the ER twice in a week. The first time was the worst. The room was spinning if my eyes were open. If I closed my eyes, I felt like I was in a car, rumbling down the road. A few days later, it started up again, not as bad, but the medicine wasn't making it stop. Walking through the house was like trying to walk on moving waves. The floor was visually moving as I walked. The ER did a CT scan and found nothing. A followup with an ear specialist determined that I probably had a bad ear infection.

Since then, I have found I am more susceptible to things that didn't bother me before. I have trouble if I watch something that is spinning. When a movie pans around the actors in a circle, I have to look away. When I set up my photo booth (a 10x10 white canopy), I have to take motion sickness medication first, or I have a sick feeling, and my legs get shaky.

Last December, I traveled by car from Seattle to Tucson. Two trips through the mountains. During the weekend between the two mountain drives, I felt nauseated a lot. So, I was taking my medication to make it go away. After the return trip, it got a lot worse. Not the bad spinning like before, but constantly feeling nauseated and shaky unless I took the medication. I finally went to urgent care. They said my ears looked inflamed, and prescribed some ear medication. They said it was good that I was already taking the meclizine. After a few days, I got in with an ear specialist. By then, my ears looked good, so they said to just keep taking the meclizine. Just some inner ear problem.

For some people, there does seem to be a way for air from the cpap to get into the inner ear canal. I'm not sure how, and it does seem pretty rare. Whether or not it is cpap related, it does sound like an ear issue, and I have had two ear specialists tell me they couldn't find anything, and it is just something you deal with until it goes away. Not much help. I know I was very frustrated to hear that when I was making myself tired with the medication, yet being told that was my only option.

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Re: have you had these specific symptoms?

Post by chunkyfrog » Tue Nov 07, 2017 6:02 pm

Are you afflicted with an HMO?
Under some situations, even your medical team may be discouraged from doing their best-- FOR YOU.
Medical education is not always the best, finest, and latest possible--and doctors can have an "off" day.
In the same situation, I would persist in seeking answers--wherever it takes you.
Yes, more tests, consultations, etc.
Sorry, but you may be that outlier who provides the key for yourself and many others.
Never take no for an answer without a promise that someone will keep looking.

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luvsbluberries
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Re: have you had these specific symptoms?

Post by luvsbluberries » Tue Nov 07, 2017 8:55 pm

1) Yes
2) No

Sleep doctor felt that it was very likely related to sleep apnea; diagnosing Neurologist concurred.

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Rainmom17
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Re: have you had these specific symptoms?

Post by Rainmom17 » Tue Nov 07, 2017 10:33 pm

Thanks for the various replies. Appreciate it.
I figured if 2/3 of you said you'd experienced those things, then I could chalk it up to apnea and just proceed with patience. But, it looks like most (but not 100%) of you haven't had these things as part of your experience, so I need to keep investigating. I have had tons of tests of all kinds, and no help has really been given for these things. Primary doctor says the usual things like get more rest, drink water, and don't stress.
As far as weak and shaky legs, have you already assessed your meds for possible side effects? When a person's sleep is really bad the muscles aren't rested and restored as they do with proper sleep. I would think it would take some pretty prolonged sleep deprivation to notice that, though I don't really know. I am not familiar with your history. If you happen to have limb movements during sleep, that's a whole different discussion
Neither of my meds would cause symptoms like this. During my sleep study, they saw no sign of restless legs/limb movements. But thanks for suggestions.
Are you afflicted with an HMO?
Thankfully no. But am afflicted with a very non-curious primary care provider. I mentioned sleep apnea to her two years ago, but it took almost 2 years for her to refer me to a sleep specialist. I should have been more assertive about it.
you really do need to see a doctor
and not expect random people on the internet to diagnose you

that said
too much vit b12 could cause the second one

number 1 sounds like an ear problem
although it could be a brain tumor
Yeah, I definitely wasn't looking for random people to diagnose me. Was just wondering whether what I experience is commonly related to apnea. Unlikely to be a brain tumor - have had multiple MRI's, all of which look great.
It sounds like my vertigo symptoms that I get when my ears act up.
A possibility, for sure. I had an ear infection that was very slow to clear up about a month before I started cpap. I had the problems before cpap and since. Will definitely look into this possibility.

1) Yes
2) No

Sleep doctor felt that it was very likely related to sleep apnea; diagnosing Neurologist concurred.
Interesting. I'm curious as to whether cpap cured you of the 1st symptom (feeling like being on a boat).

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Rainmom17
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Re: have you had these specific symptoms?

Post by Rainmom17 » Wed Nov 08, 2017 1:13 pm

I've actually been concerned that I have a B12 deficiency, as that can cause balance issues. But my blood test shows an adequate amount.
Haven't seen an ENT about inner ear. I really do need to do that.

luvsbluberries
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Re: have you had these specific symptoms?

Post by luvsbluberries » Wed Nov 08, 2017 5:51 pm

Rainmom17 wrote:
1) Yes
2) No

Sleep doctor felt that it was very likely related to sleep apnea; diagnosing Neurologist concurred.
Interesting. I'm curious as to whether cpap cured you of the 1st symptom (feeling like being on a boat).
I have been on cpap for less time than you.

For my condition there is no test, other than to rule out other problems (including a brain MRI), having a certain medical history, and positive results with medication. I have been able to significantly reduce the medication, but have not yet tried to go entirely without it.

If you are in the Western part of your state, I can give you the name of a particularly sharp ENT that nailed my probable diagnosis in the first few minutes of speaking to me. PM me if you're interested.