I Did My Own Sleep Study At Home!

[Elenapap11]

I heard so many people these days writing that 'we have to take the bull by the horns' and that we should be an active member in the process of a clear diagnosis.For those who have read my previous posts they know that the doctors were unsure if i should take antiepileptic drugs or cortizone...or search more

Anyway after many nights of waking up with numbness,tachycardia,nausea and waking up tired i decided to monitor my sleep with a video camera.I thought that if i was having some sort of seizure there would be some signs of it.I wanted to see what i do before i wake up feeling so awful.The next day i watched the dvd and i was really surpsised by the findings.Firstly,there was no spasm,twitching or anything to indicate neurological abnormality.My face was very peaceful and i seemed to be sleeping deeply.Thirty minutes after i had slept i started opening my mouth and seemed to be struggling to breathe.While my mouth was wide open i started making a whistling sound which was really loud.That lasted for a couple of minutes and then i woke up suddenly gasping for air.The symptoms when i woke up where numbness in the abdomen,difficulty breathing,brain fog but....no whistling sound.I stayed in a sitting position for fifteen minutes until i felt better and then i went back to sleep.After that i slept normally for the rest of the night.Now i wonder if this has been happening all along.

Today i went to my neurologist and did another EEG which came out normal.I explained what i did with the video and he told me that he was now convinced that epilepsy treatment is not what i should take.I spoke with my allergist and she put me on Singulair,Aerius and Afluon nasal spray with new dosage and now we'll wait and see if i m going to sleep better.I will probably need to do a sleep study in a hospital at some point but I am so happy we've ruled out epilepsy.Why haven't i thought of doing this video monitoring earlier?Or why didn't any doctor bother to give me the idea?

Let's hope this will be the beginning of getting my answers and put an end to my chronic problems(or at least put a pause-that will be good enough for now)

[AllAboutPeace]

That's brilliant ! What a great idea! I'm happy for you that you were able to rule out epilepsy and you're a little bit closer to figuring things out.

[Anoj]

interesting. i finally had my sleep study done after about a 3-month wait. the tech said i had no apnea and barely snored once.

[NMPotsie]

That's great. I've had overnight pulse ox monitoring but no sleep study, as I'm terrified and can't sleep in strange places. My hubby says I also "whistle" at night. Had my lungs checked backwards and forwards, and no problems. I'm always exhausted, though, and sometimes wake up gasping, which doc attributed to bradycardia. I may give this a try. Thanks for sharing.

[Elenapap11]

I just wanted to add that i monitored my sleep three times after that and i don't do the whistling sound every night.So if i had done a sleep study in a hospital on one of my good nights it would probably come out negative. I think that in tests such as EEGs,TTTs and sleep studies the results are not always right because you might be doing them on day when you feel ok.There are various parameters that may affect results and that's why it's always good to check yourself at home in actual conditions that you live your everyday life.

NMPotsie i have bradycardia too during my sleep.I have around 42 heart beats during sleep.How many have you got?

[NMPotsie]

I get down in the mid to high 30s at night. My holters and overnight pulse ox measured 38 and 42, but I've seen 36 on my pulse ox. I also have sustained runs during the day in the 40s (before I started bbs). Everything checks out with my heart. Dr. Goodman says it's not uncommon for people with pots, so I shouldn't worry. Sometimes it's hard, though.

[Elenapap11]

I get down in the mid to high 30s at night. My holters and overnight pulse ox measured 38 and 42, but I've seen 36 on my pulse ox. I also have sustained runs during the day in the 40s (before I started bbs). Everything checks out with my heart. Dr. Goodman says it's not uncommon for people with pots, so I shouldn't worry. Sometimes it's hard, though.

I know what you mean .You can never be a 100% reassured even if you know this is a common symptom.

[Anoj]

so interesting that you brought up the bradycardia issue. i'll def ask about this when i go to my follow-up appt.

[comfortzone]

I've heard that pulse ox readings on people with orthostatic issues or pots etc. are notoriously inaccurate - dunno if it's because of where our blood lands when we sleep - pooling - or just what the cause is - but an autonomic specialist told me this - I was worried as my pulse ox on a sleep study was only in the mid to high eighties with a dip to 72% - then with the cpap titration test - which fixed mild apnea issues - I still only went on with pulse ox's in the mid to high eighties - I used to be under the assumption that O2 sats below 90% at night required supplemental oxygen - in the hospital setting .... not sure what to do about this doctor's observation - because the equipment is there for a reason - yet what do you do - push the doc for pulmonary function tests or some other reason for the low sats at night while sleeping - or just 'let it go' as they say.....and understand that sometimes patients with certain conditions and certain medications may just live in the land of 'low' sats.....

[Elenapap11]

@Nowwhat:I've asked my self the same question again and again.What's the point of overanalysing everything.For me the answer is that i cannot accept that i have to put up waking up every night 3 or four times with a series of symptoms which are intense and having to go to work the next day with 2-3 hours of sleep.I cannot accept that i woke up one day and everything was wrong with me.Doctors are able to say that because it's not them or their wife or their child being sick all day.If they were in our position do you think he/she would 'let it go?'Not really.They would search day and night to find a solution.But unfortunately we are not their sons or daughters and the only reason they want us to 'let it go' is because we are a constant reminder of their inability to give us solutions and damage their ego(and believe me it's really high in most doctors.Most of them suffer from the "God-syndrome".)

So to make a long story short i am of the opinion that we should let it go but only if we can live with our symptoms.Looking for answers is a vital instinct of humans and without medicine would not exist and people would die from diabetes,heart conditions,asthma etc...and everyone would think that it is the natural order of things.Don't allow anyone to make you believe that you should quit just because answers don't come easily.

[NMPotsie]

Nowwhat that's an interesting idea. I've never heard that, but it makes some sense considering that we clearly aren't getting enough blood to our brains/lungs. I have undergone multiple lung function tests because of my SOB complaints and they are all fine to excellent. Recently had one checking for asthma and I had to blow into that mouth piece really hard and keep blowing for 6 seconds and I swear nothing was coming out and I could hear myself forcing it, yet the doctor was like "oh that's great; everything looks great." Huh?

I've been in the ER, couldn't breathe, begging for nebulizer and they are like "your o2 sats are 100 (or 99/98)." I often feel like I have an ace bandage around my chest, yet everything on the pulse ox looks normal unless I raise my arm; then it drops to 92 or even lower sometimes (I've seen 86) within seconds. I don't know if this is normal, but if raising my arm lowers it that quickly and that much then I'm guessing my brain (which is always raised unless I'm flat) is getting around the same reading.

Like Elena, though, I have to ask the questions and worry about it. I think this is the thing: if the doctors are wrong, and I die, the consequences for them are much less severe than they are for me. I am much more invested in my living than they are, so I will push and question until I get an answer that makes sense. I don't often just settle for "well, that's a pots thing" because there should be a reason; they may not know exactly what causes pots, but they know what it does to our bodies to some extent, and I want to know that too. Or, I want to badger them enough that they say "hey, we should investigate this and find out the cause so they'll leave us alone."

Not one doctor I've seen cares about the brady issue, though. They all agree it's normal, most potsies experience it, and many live long lives in spite of it. So I try to ignore it and get some sleep.

Edited to add: I've theorized that since most of us are very active/athletic prior to our diagnosis we had outstanding lungs, and dysauto has caused them to become "normal", but we aren't used to normal so we feel we are strangling. Maybe this is what the average joe lives with, so they just don't think anything of it? Probably not a good working theory, but at least it's a theory.

[Elenapap11]

NMPotsie i think your theory makes a lot of sense.I have been thinking about that too and a poll in the forum which was posted at some point showed that the majority of the members were people who were overachievers and overly active before they got sick.I don't know how this is explained scientifically or if it could lead to answers but it's definitely have to do with many autonomic dysfunctions including POTS.