Sleep disorders and pulse rate?

you should be proud shes lucky to have ya! most people have bee diagnoised with POTS because they persued it themselfs lol.thing im sure i dont hae sleep apnea which is gd,got 11 hours sleep last night with no spo2 events and 135 pr events,dunno wot that means though lol.

kaiasgram wrote:You should be proud, Max! Your wife is lucky to have you , and to have been evaluated by the right doctors. I'm sure my dysautonomia has complicated both my SA and my adjustment to CPAP -- might even explain those wacky flow lines I've posted and continue to see in my SleepyHead data. Floods of adrenaline with every RERA!

Thank you. When it is your dear-one suffering, it takes no noble action to try to find some means of helping her (or him). The search is still afoot. We pray for normalcy. Depending on the form of dysautonomia, I can imagine all sorts of physiological responses to apneas and if you have the adrenal form of POTS I would imagine that spikes in adrenalin are quite possible during sleep as well as exaggerated cardiac response (higher heart rate than otherwise, arrhythmias, etc.) and the body may try to counter the tachy event and react in different ways, sometimes excessively, leading perhaps to brady hypotension. And as I mentioned, some of the meds that are used to try to cope with some POTS can cause issues with sleep as well. Our bodies are complex systems of interacting loops that sometimes just being able to moderate and stabilize the responses is a goal.

sunzzofman wrote:you should be proud shes lucky to have ya! most people have bee diagnoised with POTS because they persued it themselfs lol.thing im sure i dont hae sleep apnea which is gd,got 11 hours sleep last night with no spo2 events and 135 pr events,dunno wot that means though lol.

We are our own best advocates and most informed about how we feel and the effects of our treatment. While Doctors have access to more tests and metrics, they typically see you too briefly to really get only a snapshot of the picture.

I personally don't pay much attention to the SPO2 or heart rate *event counts* on my pulse-ox, but I look at the chart and the range of the O2 and HR to sense how good or bad it is, but then I'm a more visual type, absorbing and interpreting the trend charts in my mind. The human mind is a powerful interpreter of trend charts, simultaneously mentally averaging on different time scales, sensing variance (how dynamic the data is), maximums and minimums all in "one glance". I would think that POTS patients, particularly adrenal, would be most interested in the consistency and range of the HR, whether it is really flying around, or mostly stable with some deviations now and then. About 1.5% of people in the USA has POTS, and I think adrenal POTS is about 10% of all POTS (0.15% of people), so fairly uncommon, and adding to that Mast Cell Activation is 10% of that (0.015%), so very rare (1 in 6.6 million).

yeh normaly iv only look at graphs etc and not the events etc,but as im not to sure what im looking at i carnt really interpret it if u get my drift,the hardest part about pots is gettign diagnoised lol,iv herd there isnt much that can be done tho except a few beta blockers etc iv never even herd of mast cell activation ! which is shocking cos i read up on alot about these sorta things lol,and seeing as every doc says its all mentaly iv got no choice! is your wife better after being diagnoised?

Yes Max, the heart rate variability is taxing, as is the BP variability. My HR at night ranges from the low 40's to the high 80's most nights (based on titration week report -- on the first night of titration my max HR hit 155 at some point). I'm trying to get a pulse oximeter because I think, as you said, this information is more important than events counted especially when you're not responding well to the xPap therapy.

You actually know way more than I do about POTS -- so much more is known (at least by those doctors who choose to know about it) than was the case when I was tested. Unfortunately I've had both a cardiologist and a neurologist wave away my questions about dysautonomia and how it might be relevant to some of my health issues. So the conversation never even gets as far as mentioning POTS.

Thanks for sharing, it's helpful to know someone has an in-depth understanding of the complications I'm having with CPAP. Sensitivity to mini-arousals is huge, and also to any changing conditions -- like last night my humidifier died. I woke up this a.m. feeling like I'd been put the the wringer and hung out to dry, no pun intended!

sunzzofman wrote:the hardest part about pots is gettign diagnoised lol,iv herd there isnt much that can be done tho except a few beta blockers etc iv never even herd of mast cell activation ! which is shocking cos i read up on alot about these sorta things lol,and seeing as every doc says its all mentaly iv got no choice!

Correct, there's not much that can be done for POTS. Depending on the type and cause of POTS, some people can "grow out of it", usually young people who have gotten POTS from an illness, a virus or bacteria, etc. Other forms are progressive, such as my wife, there is no cure, it only gets worse and you just try to treat the symptoms.

is your wife better after being diagnoised?

Well, diagnosis is not treatment, only points in the direction of treatment. She's on just one beta blocker, propranolol, which lowers the tachycardia (high heart rate) but also her pulse pressure (the difference between Systolic and Diastolic). Her pulse pressure is in the teens or twenties, instead of 30-50 for a normal person. This leads to many perfusion issues, but she does pretty well still, cognitively. The other beta blockers don't work or make it worse. Propranolol helps with her migraines some, so they say, but a part of her malady is nearly daily migraines, or maybe even multiple migraines per day, some painful, some silent. The silent ones manifest in sensations of capsizing and "the desk is coming up in my face" and "my chair is flying up to the left or right" feelings, probably hemiplegic, affecting one side of the brain, hence the imbalance sensation. She takes Relpax for those episodes and it helps, but you can only take so much Relpax in a period of time. She's just started yesterday afternoon on a regime of H1 and H2 blockers for the mast cell part, the histimine floods (low blood pressure, flushing/itching/rash like response) and the associated GERD, normal doses to start as the cardiologists / POTS doctors discuss and formulate the right doses, which may be much more.

kaiasgram wrote:Yes Max, the heart rate variability is taxing, as is the BP variability. My HR at night ranges from the low 40's to the high 80's most nights (based on titration week report -- on the first night of titration my max HR hit 155 at some point). I'm trying to get a pulse oximeter because I think, as you said, this information is more important than events counted especially when you're not responding well to the xPap therapy.

155 during sleep is quite high, even my wife I don't think often goes that high during sleep. I should look at her Mayo test results because they put her on a 24 hr pulse-ox/blood pressure/holter. We slept in a hotel and her heart rate was reasonable during sleep, but then again she does not have sleep apnea kicking up problems.

You actually know way more than I do about POTS -- so much more is known (at least by those doctors who choose to know about it) than was the case when I was tested. Unfortunately I've had both a cardiologist and a neurologist wave away my questions about dysautonomia and how it might be relevant to some of my health issues. So the conversation never even gets as far as mentioning POTS.

I've spent 4 years reading, studying, talking with probably a dozen doctors, most of which "poo-poo" the patient or patient-advocate (me) in the beginning, but once you develop a relationship and learn more and as I came up with less hair-brained theories as to causes, they start listening and collaborating. Long ago I asked if her low BP was due to ANP emitted from her heart (she likely has Hypertrophic Cardiomyopathy in some intermediate stage, but just some hypertrophy on the last echo) and he pointed out, as many here learn why they have to pee in the middle of the night, that ANP causes urine dumps which my wife has some, but not significantly. Then we found the mast cell thing, it correlated with other unexplained symptoms (flushing/itching/hypotension) and then I had an "ah HA!". In part I was right early on, but the wrong bodily chemical, tho she probably does some ANP issues, with occasional urgent needs to run to the powder room.

Thanks for sharing, it's helpful to know someone has an in-depth understanding of the complications I'm having with CPAP. Sensitivity to mini-arousals is huge, and also to any changing conditions -- like last night my humidifier died. I woke up this a.m. feeling like I'd been put the the wringer and hung out to dry, no pun intended!

Well, this forum is all about sharing so we can all learn from each other and my guess is that since there is such a large community here, that quite a few members have POTS and by reading our conversation, they may go "Hey! That's ME!" and can get some help, at least with the symptoms.

If you think you have POTS and your insurance or wallet will allow it, maybe you can go see a neurologist or cardiologist that specializes in it to get "screened"... "I think I may have POTS, can you screen me and tell me yes or no?".

yeh thats max its great to talk to someone who knows about pots etc.kinda scares me though as you said it can just get worse and worse how do they find out what type it is? i thought pots was pots,which is a type of orthostatic intolerence and dysotomia(spelt wrong).if its ok me asking you sorry uv allready told us so much so far but iv never found anything to do with types of pots.

sunzzofman wrote:yeh thats max its great to talk to someone who knows about pots etc.kinda scares me though as you said it can just get worse and worse how do they find out what type it is? i thought pots was pots,which is a type of orthostatic intolerence and dysotomia(spelt wrong).if its ok me asking you sorry uv allready told us so much so far but iv never found anything to do with types of pots.

The "S" in "POTS" is "Syndrome". It is a cluster of symptoms. The causes vary. The best way to determine if you have POTS is to see a cardiologist or neurologist or endocrinologist that specializes in it. There's a battery of diagnostic tests they can do to diagnose. Since the causes of the syndrome vary, the prognosis (whether it will go away or not) will vary. Once diagnosed, then the doc can try to figure out the type and the cause. To tell if it's Hyperadrenergic POTS, there are some specialized tests; maneuvers they put you through while testing your blood norepinephrine, epinephrine and dopamine levels. Finding the cause is the hardest part, no one may ever figure that out. In the meantime, you may be able to get treatments for the symptoms, such as the tachycardia, and maybe the hypotension if you have that when standing. There are some things that can help the tachycardia / hypotension symptoms when standing, simple ones, such as clenching your butt muscles when you are light headed, which forces fluids up to the heart. A common coping for hypotension is drinking salted water, which of course is counter to the times you may have hypertension. Generally, treatment can be rather paradoxical and messy since the condition is dynamic and paradoxical in itself.

ooo,well ages back i had a adrenal tests were they took my blood 3 times and put some stuff in my to see if i had adrenal fatigue but that came back normal,im yet to have a tilt table test though im really hoping my gp will reffer me in a few days when i see her.not easy when they dont even believe in the condition though uno,and im from england so it works differently over here.i allways have high blood pressure so dunno wot that quite means :S my heart rate increases by 30 bpm within 30 seconds of standing so i hit the criteria straight away,i did a home poor mans tilt table test a minute ago,were you lay down for 5-10 mins then stand for 5-10 mins,below is a link to spo2 assistant picture that i took as when i did the test i used my pulse oximeter.


http://imageshack.us/photo/my-images/826/homettt.jpg/

sunzzofman wrote:ooo,well ages back i had a adrenal tests were they took my blood 3 times and put some stuff in my to see if i had adrenal fatigue but that came back normal,im yet to have a tilt table test though im really hoping my gp will reffer me in a few days when i see her.not easy when they dont even believe in the condition though uno,and im from england so it works differently over here.i allways have high blood pressure so dunno wot that quite means :S my heart rate increases by 30 bpm within 30 seconds of standing so i hit the criteria straight away,i did a home poor mans tilt table test a minute ago,were you lay down for 5-10 mins then stand for 5-10 mins,below is a link to spo2 assistant picture that i took as when i did the test i used my pulse oximeter

Well, it looks like you did your own screening suggesting seeing a doctor about it. The Tilt Table Test is sometimes, but not always, a good indicator. When we went to Mayo I was sure my wife would find Tilt Table Test torture, they do it in a hospital with a crash team on standby, but she went through it like a walk in the park. I was floored, but the other tests were positive and Mayo diagnosed her with the adrenal form of POTS. Goes to show everyone is different.

MaxDarkside wrote: The Tilt Table Test is sometimes, but not always, a good indicator. When we went to Mayo I was sure my wife would find Tilt Table Test torture, they do it in a hospital with a crash team on standby, but she went through it like a walk in the park. I was floored, but the other tests were positive and Mayo diagnosed her with the adrenal form of POTS. Goes to show everyone is different.

The tilt test was pretty brutal for me -- bp and hr shot up on the tilt up, then after 20 minutes of standing I passed out. I was wiped for at least two days after that, it was really surprising how hard that was on my system. I remember thinking beforehand, how could this test show anything, after all I get up out of bed every day from a lying position and nothing major happens when I stand up. Wow.

I was put on atenolol and over time my dose got up to 100 mgs. I dropped to 75 at my primary's insistence because she thought it was contributing to my fatigue. I've been at 75 mgs for several weeks now and the PVCs have really increased, and my last BP reading was higher than I've seen it in a long time. I think the atenolol may have saved me from even more damage than I've sustained having undiagnosed apnea and all the sympathetic arousals. When I saw a max bp of 155 on the first titration night, I had to wonder what it would have been if I had not been on atenolol to help combat the effects of the adrenaline cascades. The beta blockers are a mixed bag.

kaiasgram wrote:The tilt test was pretty brutal for me

Yes, the tilt test can be brutal and you wouldn't think it would be, in a first impression. Lay you down for a while, tilt you up for a while, no big deal, right? HA! Atenolol is probably better for an apnea patient because it does not cross the blood-brain barrier and thus I think it does not disturb sleep like Propranolol. My wife was on Atenolol in the beginning, but it wasn't working real well in her case and one of the POTS doctors said Propranolol is a better choice for her. They had her on 20 mg 2x a day but Mayo said ease up on the evening dose (she eased all the way) so she could sleep better. I showed a while back her Zeo waves vs. mine, it's like she's tortured in her sleep and has nightmares. Taking the AM dose only she does sleep better but she's quite tachy in the morning just before taking her next AM dose, but it's something she deals with until the AM dose kicks in.