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Avatar universal

Sleep Study,update

Last night I had a Sleep Study and the tech told me I stopped breathing several times(for less than 10 seconds each time) and that my REM didn't start until 4 1/2 hours after I fell asleep. I imagine this could be contributing to my chronic fatigue.

As an update, since drinking salty broth before bed for a few nights in a row, my BP has been great. Yesterday it was actually 122/86(big difference from 80/60);so I'm not having THAT much salt anymore(don't want it to go too high). By the way, good call 'supineallthetime' for keeping an eye on my BP with all that salt.
Hopefully, this will continue.

I do have a question, though. With POTS, won't your BP stay low even with extra salt? Here I go, doubting my diagnosis again. I have stopped taking my Midodrine because of the normal BP and I don't want to push it.
My GP put me on Provigil for the chronic fatigue and weakness and it does seem to work a bit.Yay! My cardiologist went out of town, so I can't see him until the 17th to discuss this and the Midodrine with him.

Just wanted to let you guys know how all the advice everyone has given me has helped me out. Please, keep me informed on how you all are doing, too. :)

Wen
18 Responses
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492869 tn?1285018933
I am on a "Mito Cocktail", and in the process of being evaluated for a Mitochondrial Disease as a possible cause for my Dysautonomia.  My cocktail includes: CoQ10, Acetyl-L-Carnitine, B-50 Complex, and Vitamin C.
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492869 tn?1285018933
Here is a link to my Pulse Ox:
http://www.amazon.com/Finger-Pulse-Oximeter-Easy-Carry-wrist/dp/B0012QU09W/ref=sr_1_1?ie=UTF8&s=hpc&qid=1253747386&sr=8-1

It takes about sixty seconds to pick up an accurate reading.  For the price it has definitely been worth it to me, (I use it on the daily bases), and it seems accurate enough.  (It matches my doctors office, but can only really be used under ideal conditions.)

I too would love to know what model anyone else is using.
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612876 tn?1355514495
Hey supine,

Where'd you get your pulse ox and what model is it, if you don't mind me asking?  I've been looking to get one.
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Avatar universal
I am a pulse & BP monitoring machine!  Yep... bedstand has all my gadgets in reach:

a) Pulse-ox which gives continuous graph of pulse plus oxygen saturation.
b) BP meter which also does pulse of course.
c) Glucose meter on rare occasions.

I can sleep with the Pulse-Ox on every now and then (it hangs from finger and records many hours then downloads to computer).  That lets me know how low I am going with HR in the night.

From my reading, the record for low BP is in the 20's and since the guy was a top class athlete and otherwise healthy it was "asymptomatic bradycardia".  The heart becomes strong & efficient and pumps more with each stroke so fewer strokes are necessary.  Hypertrophy is also "common" or less-rare with athletes... whereas it would be a disease state for others.  These things make treating an athlete that might happen to also have a heart disease problematic!  Some say you just have to "decondition" to really know what's going on.

Your 90/30 BP while exercising certainly seems low to me!  My understanding is that even hypertensive range BP is normal & fine during exercise.  I hope with better fluid & BP control nowadays you hold pressure higher than that.  Perhaps some "orthostatic hypotension" was involved with being upright on the treadmill.

There is significant symptomatic crossover between CFS, POTS & fibromyalgia... and IBS stuff sneaks in for many as well.  Since each is a "syndrome" which allows for multiple underlying causes... a subset of people from each group could well be expressing the same underlying problem in different ways and their classification can be almost arbitrary.  Just one of the "blessings" of having an elusive condition mostly having "nonspecific" signs & symptoms (meaning they are shared by many other diseases or syndromes).  BTW, some researchers distinguish a CFS-P subset of CFS (P being POTS)... since that sign and general orthostatic intolerance is so much in common between the two.

Plus these syndromes can seem almost like mild/early mitochondria disorders (I say "mild" because some mitochondrial disorders can kill you early in development).

The "MITO First" handbook from this site is handy:

http://www.umdf.org

It mentions in regard to adult onset mito disorders: "The early phase might be mild and may not resemble any mitochondrial disease. In addition, symptoms such as fatigue, muscle pain, shortness of breath and abdominal pain can easily be mistaken for collagen vascular disease, chronic fatigue syndrome, fibromyalgia or psychosomatic illness."

That handbook lists many supplements and mentions some low level metabolic functions they can be involved in and *might* help.  One interesting thing they say is not to take iron unless you have deficiency... and avoid ingesting iron & vitamin C at same time.

A very basic mito support set is: CoQ10, creatine, L-caratine.  I might get some energy help from sulbutiamine (a lipid soluble variant of a B1).  I tend to take creatine and B vites (but some people don't like niacin... I like it).  I happen to be trying Co-Q10 now but it hasn't been long yet and at the moment I'm throwing in plenty of others too... later I will isolate it better in my amateur self-testing!  None are "miracle" solutions but some might be helping a little.  Always hard to tell with these things.
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Avatar universal
How in the world could exercise contribute to a bradycardia if it is already in the 30's-low 40's? I mean, how much lower could it get? Also, how on earth did you measure your BP in the morning before standing up to get the BP monitor? Do you literally have it on the side of your bed? Or do you have a wrist/chest monitor? I would like to take my BP/HR before getting out of bed in the mornings as well. Then measure after standing up to see how well my POTS difference from supine to standing is under control with the beta-blockers(Lopressor).That reminds me, when I did the treadmill test, my BP was 90/30 while running! Wouldn't you say that's a bit low? I thought I'd never reach my maximum HR. One more question; Before a tilt test, are you suppose to stop taking midodrine, beta-blockers, and/or fludrocortisone for a couple of days prior for a better reading? I haven't had a TTT yet, though my doctor diagnosed me(POTS) in his office(sitting then standing) before putting me on the lopressor. I'm going to suggest one at my next EP or cardiologist appointment so I can have a documented record of POTS to be on the safe side in case I ever have to change my cardio. or EP for some reason. Wouldn't you suggest that? The good thing is that they are a team in my treatment of POTS. This I like a lot. Now if can just educate my GP on Dysautonomia...He is a good doctor, though. He's been treating all my symptoms even though he is generally uninformed of the disorder.

Also, for those of you who have the symptom of chronic fatigue with POTS, how are your docs treating it? With medication, physical therapy, neuro-chiropractor( some treatments I've heard of)? Mine is actually suggesting I might have Fibromialgia. Is this possible? I know all my muscles in my body ache(as you know, my legs are the worst) and this is a symptom of dysautonomia, but isn't this usally caused by blood pooling in the legs? My legs don't turn blue like I've heard happening. Unfortunately, I live on the West coast, so there are no Dysautonomia labs close by for testing this sort of stuff. But I am constantly moving them(pacing, shaking, crossing and rocking). To be honest with you , my doctor put me on some very strong pain meds that worked like a charm(for the fatigue AND pain/cramping).But after a couple of months I told him I didn't want to be on them regularly and he discontinued them. Then he put me on a med called provigil for the fatigue. Anyone on it? It's been three days and I feel better than I have in a long time, the achy body is still ther but it's bareable and my mind is clear. The only problem I have, is that in the mornings, before taking it, I feel a little more foggy than usual and I don't like that. On an as-needed basis, I think, this would be a better choice, instead of everyday. But right now, I've needed it everyday. Since I've felt somewhat better for a few days, I think I'll skip the dose tomorrow and see what happens. It's not like I haven't felt extremely awful before and I can handle it. I was just wondering what some of the other treatments for chronic fatigue were, besides the normal ones(salt,gatorade,etc.) I still need to get some vitamin D and B's(12&6?) and, I believe, magnesium. Any suggestions? By the way, does anyone know what Q-10 can do for us, if anything?
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Avatar universal
I shall try the ramen trick for sure... I've got plenty on hand.  That's way cheaper than gatorade!  Some people worry about MSG but I tried mass doses from Clamato as a self-test and saw no ill effect.  I like ramen stuff... The only thing I'll have difficulty with is not going ahead and eating the whole thing with the noodles and getting a few extra calories :)

Coincidentally on the bradycardia thing... I'm back to a low zone.  Was 37bpm this morning (awake... well what counts for "awake" for me at least :).  Like you, I "push myself" through exercise... though I've had streaks in the past where I get a stronger feeling for a while.  Even exercise can contribute to bradycardia as one improves cardiovascular health.  Perhaps with an underlying autonomic wackiness that also gets exaggerated!?!  I know in dysautonomia a person can just as well have lows, highs, both, volatility, hypersensitivity, etc. since the essence of the term is dysregulation of these basic things.
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Avatar universal
A little history:
I originally thought I felt so fatigued and my BP was low because of the smoking. I attributed the tachycardia to it also, even though it happened before I had one in the morning. So did my family. The funny thing is, I was diagnosed with POTS by the electrophysiologist and when my tachy was under control, I forgot about it. When I realized that how I was feeling wasn't normal, and started researching my symptoms on the internet, I found Dysautonomia. It wasn't until I found this Community and you guys, that I made the connection to POTS. Let me just say that ever since I found this site, I've learned a wealth of information. From learning that POTS(my diagnosis)is a form of Dysautonomia, to the fact that my symptoms are very real. Some days, when I can't stand it any longer, I remember you guys, and that I'm not alone.
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Avatar universal
Let me tell you what I've been drinking...About 12 ounces hot water with a Top Ramen packet. Try it 'supine', maybe. This is a lot of salt and it doesn't taste that bad. I stopped it for 2 days and my BP is back down. I'll have to keep working with this method. I know what you mean by 'distinct benefit' from the fludrocortisone(or anything for that matter).
It is hard to tell when there is improvement from meds, unless it is immediate. For instance, the midodrine may improve BP, but(for me) it doesn't really help with fatigue. So I don't feel any better overall. The same with salt intake and water/gatorade. I know it's helping, but I feel so bad, it's minimal at best. With the walking, I actually have to PUSH myself some days. I laugh sometimes at what I must look like going down the sidewalk like that:) I know it has to be good for me though, so I keep on. Thanks for the 'kudos' for quitting smoking. I was smoking 2(yes 2) packs a day for 20 years. Of course I had to work my way up to that, but for a good year and a half it was 2 packs a day. For the first 2-3 days after I quit I had nervous energy, then I felt the same, even worse. But I thought it was just because I wasn't smoking that I felt so bad. It never occurred to me that there were physical effects happening here. Heiferly made a good point by stating that nicotine is a vasoconstictor. I must admit, I do chew the nicotine gum, so I'm not completely off nicotine. Slowly but surely.
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875426 tn?1325528416
If you have sleep apnea x number of times in a night, they diagnose you with it.  If you have a lesser number of incidents, that is considered normal, I was told.  That does seem like a long time to be in REM before going into your deep sleep!
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612876 tn?1355514495
Were you a heavy smoker?  Did the dysautonomia symptoms get worse after you quit smoking?  I ask because when I quit last year my meds actually had to be adjusted to compensate for it.  The nicotine in cigarettes acts as a vasoconstrictor, so while you're obviously better off without the cigarettes, that often has to be taken into consideration in adjusting the treatment regimen to compensate when a person with dysauto quits smoking.  

Congrats on quitting!!  
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Avatar universal
Oh... and congrats on dropping the smoking!  That is no small feat!
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Avatar universal
I'm off it to facilitate testing without med interference, but basically, yes, I am getting almost the same BP increase from high-salt/water.  However, it takes a lot (sometimes gets nauseating), the fludrocortisone probably gave a "steadier" BP increase and took less water intake (and fewer bathroom visits).  I'll take it again later and try increased dose to see if I can get more distinct benefit from it.

Had hoped it would indirectly help with fatigue and exercise intolerance more than it did but I think there was some modest improvement there (hard to tell).  I do exercise, often significantly, but it's sporadic and challenging.  Cognitive focus is my main goal & shortcoming and better BP hasn't helped that.... although it is very very nice not to be on the verge of passing out all the time! :)

It is sounding like you are dialing in on things and getting to the point that the increased exercise that you can now add will bring even further benefit to you.  That should start to snowball in a positive way (though exercise can be complicated to balance out depending on how your body reacts to it).

I am with you on the bradycardia thing.  Docs tend to write it off, but from what I've read it can bring similar symptoms on it's own (fatiguing stuff especially).  Slower pulses are more normal during sleep... but when they're more prevalent (even if sporatic) I think it fits a dysautonomia picture (provided there isn't a more direct explanation like hypothyroid and whatnot).
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Avatar universal
You said that you 'use to' take fludrocortisone. Why did you stop? Was it because you learned how to control your BP with salt, etc.?
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Avatar universal
Also, 42 seconds is a long, long time. If they didn't diagnose you with sleep apnea after that, then I'm sure I don't have it, either. Like I said, mine were less than ten seconds. He said the doctor would look it over and let me know. I'll probably find out at my next appt. at the end of the month. Maybe the low heart rate contributes to my fatigue. I don't know. All I know is how I feel, and fatigue is a symptom of POTS, so I can probably just contribute it to that. Thank you for clarifying that for me.
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Avatar universal
That was my mistake. I thought REM sleep was the deep sleep. I referred to it as REM, but he told me that I didn't go into the 'deep' sleep until 4 1/2 hours after falling asleep.
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875426 tn?1325528416
I wonder if the tech told you wrong about the REM.  From nursing school days I remember that REM was rapid eye movement part of sleep.... the part before you go into deep sleep.  I know from my own sleep apnea test that the medical worker said you have to have at least so many episodes of stopping breathing to be considered as having sleep apnea and any below that number was normal (I don't recall the number, but do recall I did not get that diagnosis).  

I think the longest I stopped breathing was for 42 seconds (been awhile since the test, but I remember it was a LONG time of not breathing), but the med. person reported it was strange.  It was as if the throttle for oxygen was stuck on open, she said, because my oxygen didn't go below I think it was 96 percent!
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Avatar universal
I'll be glad to pay up!

If you mean by the 'bed tilt trick', you mean raising the head of my bed when I sleep. Yes. Been doing that for about 3 months. I think it helps?
I am on florinef, so you're right. I need to keep up my potassium levels. I've been eating a lot of vegetables and drinking V8 as well as trying to drink gatorade(it's expensive!).
As for the midodrine, it's an as needed Rx? That makes sense. Just like the Provigil. So, I'll continue to keep an eye on my BP, even if I'm feeling good. Thanks.
As for the excercise, for the last month(since I quit smoking), I've been walking. Started around the block and now I'm up to almost a mile every couple of days! I'm feeling pretty good.
I do have one thing on my mind. I believe this is another indicator of dysautonomia: During the sleep study, all night long, my HR was 40. The tech didn't mention a low BP in addition, so I'm sure that was ok. But do you remember us discussing the low heart rates, 'supine'? My tachycardia of 160 every morning is controlled by the lopressor, but my HR still goes very low at night(maybe other times?). Yeah, I'm definitely a POTS kid.
I'm in the right place!

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Avatar universal
Great!  You're certainly making progress.  Glad to hear it.  The forum members will each be sending you their bill shortly!  Got to keep up the lavish lifestyle of prescription panty-hose and expensive electrolyte drink binges somehow!  :)

High salt/water intake is an "official POTS treatment" which seems to help some people enough that it is almost all they need, whereas others don't get enough relief for whatever reason.  If it works it is more of a confirmation of the POTS diagnosis (the hypovolemic & orthostatic hypotensive sort) than a contradiction!  I think your technique of pre-sleep salt dosing is interesting.  Do you do the "bed tilt" trick too?  (I can't remember at the moment if that has come up here)  Salt is generally on the mild side of water retention (compared to direct stuff like DDAVP) so not a big risk and it sounds like it's working well.  If it keeps the body happier during sleep, it could even cut down on sleep disturbance too.

Do keep up a bit of the full electrolyte drinks here and there, so the other non-sodium things don't get neglected.  If you were on fludrocortisone that would be more of a possibility since it signals kidneys to save salt & dump potassium.

If your body has a tendency to go as low as 80/60 then you have excuse for aiming a little high with your BP.  If you can hold consistent in the 120's that is awesome and what you should do since that's accepted "norm".  If you get it mostly in the 120's but still have dips (symptomatic) then you have good reason to go ahead and aim higher.  I personally go for 140 which is mild or "pre-hypertension".  Then you're just taking very modest "statistical" risk if any (assuming you're not having huge rises above that at times you are not noticing).  Even when I was on fludrocortisone (florinef) that's mostly where I was which helps minimize symptoms upon standing (even though a dip occurs the whole range is shifted upward).

The sleep disturbance is certainly a suspect for fatigue (chronic or otherwise) and even other things.  It seems apnea and similar sleep stuff is getting more recognition nowadays (rather than just considering the most extreme forms of it).

To my knowledge, Midodrine is generally in the class of "as needed" and short-acting drugs... as opposed to those that one is meant to get to a "steady-state" with so you shouldn't get chewed out by the cardio for adjusting your use of it.  Definitely talk to your cardio later when convenient to get their professional opinion on good BP ranges for you considering that you're fighting a tendency to low BP.  To my knowledge things like 140 systolic are not an "immediate danger" at all... they are bad in the context of "chronic high BP" and would be an early indicator of trouble if they were not from an intentional source.  My doc calls that range "benign hypertension" which is a good way of putting it... high but harmless in the immediate sense.  Basically, you can still take the Midodrine if you time it right (not laying down a lot) and make sure BP doesn't get outrageous.

I've forgotten if you've mentioned your general activity level before.  Are you able to do a bit of exercise or activity?
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