POTS questions! Selma sent me here to ask :)

[zygy2]

After surgery 3 I had serious problems getting my pulse down.  I knew this had always been a problem for me but it was MUCH worse after the emergency brain surgery. My NS felt this was POTS.  In ICU I was lingering around 120 laying down and just sitting would bring me to about 160, I hit as high as 190 while in the hospital.  I am now five months post op and continue to be so exhausted.  I went to my PCP to rule out needing an increase in dose for my thyroid med and that came back fine so that left we wondering what might be up.  This led me to buying a pulse monitor because my chest hurts at times.  I am finding that sitting I run about 80 but when I stand I zoom right up to 125-140.  I am washing dishes and seeing a pulse of 135, and when I get on my treadmill I hit 160's just walking only 3mph (I should mention I am only 40 and a healthy weight).  My assumption is that this is the POTS and I have started to write down my blood pressure and pulse to take to a Dr. but do I just go  to my PCP?? I have also read that there are different types of POTS so that makes things more confusing.  They tried me on a beta blocker but my blood pressure was going too low.  My biggest complaints are fatigue, inability to exercise for any amount of time, hard time staying asleep, tipping when I stand up, COLD COLD COLD, I was always cold but I think it is actually worse!  I also have memory, concentration and word find issues but that seems to be a very common chiari complaint and I thought that maybe time would fix all this but now I am thinking that POTS is my enemy right now!  Many things were better after surgeries but this appears to have become much worse after the third surgery.  Any input from POTS people would be greatly appreciated. -zygy

[Heiferly]

Sorry I haven't piped in here.  I'm making sure I'm up to date on my reading and trying to catch up on responding to people and just wanted to let you know that I am following what's going on with you and I hope you'll keep us informed on how things go with your tilt table test and how you're doing in general.  

Welcome to the Dysautonomia Community!  Let me know if there's anything that I can personally address for you or any information you need help finding here in our community.
-Heiferly.

[LivingInHope]

I'm glad they asked for a tilt table test for you!  Know that you can request to skip the part where they give you medicine and tilt you up again if you want.  That was the most unpleasant part of the test for me.

4 sound like a TSH number, which is the pituitary's thyroid stimulating hormone, but when you are taking synthroid, the more important numbers are your free T 3 and free T 4.  It would be great if you could find out if they are checking those, because if they aren't, you may want to find an endocrinologist whose specialty is the thryoid to monitor you.  

You have the right to ask for a copy of your lab results, so finding out what they've tested and what your numbers are compared to normal range are for things like your ferritin and iron saturation are things you may just want to pursue, because I know first hand if one is iron deficient, that can make a person with dysautonomia feel even worse than normal.

There can be some really pretty knit caps and while there are some loud furry socks out there best for wearing around the house, there are some thinner furry ones I have that aren't bad for even wearing in public!

The medicine you mentioned for sleep... I took some generic elavil (prescribed for migraine if I recall correctly in my case) once, but the pill made me so tired for more than 24 hours I didn't take anymore of them.  I wondered how could one tiny pill like that be so powerful?

Oh, I don't have a rate that high all the time if you mean 160- that was a peak in a 24 hour period.  I can pretty easily, as the test demonstrated, get up into the 130s and 140s with walking in our yard (on a hill) or on sloping terrain.  I know making my bed can get my heart  going faster than usual too!  It's kind of a comfort knowing I'm not the only one!

I was on disability for a couple of other things before I got diagnosed with P.O.T.S..  I had to quit a full time job over 10 years ago now and haven't gone back to one since.  But if I had just the P.O.T.S. now and not the things I am on disability for plus more problems that cropped up since going on disability; having grown fairly accustomed to P.O.T.S., I don't think it alone would stop me from working.  But some have worse cases than I do.  Maybe you were meant to continue to be at home and enjoy your kids and being there for them from there?  I'm sure they are very glad to have you still alive and kicking and there for them!  And I hope you are able to laugh with them without the former pain now?

[zygy2]

Thanks so much for all the information!!!  I had a great visit with my PCP today and she agreed that something is wrong :)  I knew that :)  I am just so happy they could see it.  They are scheduling me for a tilt table test so hopefully that will lead so an answer one way or another.  I have not had lots of tests done for iron or thyroid, just the basic blood work that they do each year at my physical.  I don't know what they test for or how useful it is.  I know she said my thyroid was at a 4 today but I thought I read four can be high?? I have no idea what that number even is.  I like the hat and socks idea, I may look silly but could be warmer!  I keep a heating pad in the chair I sit in and have an electric blanket on my bed.  I am so sick of being cold, I can't wait until Summer!!!!  The one really HOT week of the year was the week I was in ICU after the emergency brain surgery, i was not happy I missed the hottest week of the summer!  The Dr. today gave me amitriptyline for helping with sleep, I have to fill it tomorrow.  If it can help at all with sleep I will be happy.  Thanks for saying nice things about the positives!! I try to think that way too... I am so happy to still be here, the day of the emergency surgery I was not sure if I would be.  I am also really dedicated to staying fit as much as possible and really do walk every day and do my PT exercises!  I am 5'9" and about 150lbs so it is a reasonable weight for my height.  That is funny we are close to the same age!  I don't want to think though that I can't get this under control... It scares me to think you have a rate that high all the time.  I am over 100 if I am standing and it is not fun, making the bed this morning I was in the 140's... so frustrating.  I hope I get answers quickly and can see if I can improve this any way.  Do you work??? I can't imagine working again if I feel this way.  I have been an at home mom for 14 years but was going to go back to work two years ago when all this stuff started to happen.  Then I just started to find answers which lead to surgeries and this mess.  I could not laugh without head pain two years ago though so I am still happy I made the choice to have surgery.  I will not be happy if this POTS stuff lasts but not being able to laugh with my kids was very painful.  

[LivingInHope]

On the iron, I take mine with ester C- 500 mg (supposed to be at least 250 of vitamin C) for better absorption.  I have to take OTC clear-lax and generic metamucil for regularity issues (also likely have adhesions, having had major surgeries).  There is a kind of iron hematologists prescribe that is supposed to absorb quite well, as well as IV iron (typically it sounds like from one lady who gets hers that way along with antinausea medicine) for those who need iron badly where they can't take the oral type for one reason or another.  Eating foods high in iron is a slow way to try to work on the problem.  What is your ferritin?  What is your iron saturation percentage?  Have you had your transferrin receptors tested to see if iron absorption is a problem for you?  Getting your iron to a decent level may help lessen some of those symptoms you list to a degree!

With your thyroid testing, did they check both free T3 and T4?

With the feeling cold- some do normally run lower, but the question would be since the onset of this feeling cold so much, is it now running even lower?  I don't have this particular aspect of dysautonomia currently, but in the winter, like to have my electric blanket on nearly all the time along with another blanket and a comforter.  I like to feel warm because it helps me get to sleep.  We also have a Honeywell space heater in the day time besides the central heating.  You might try wearing a knit cap, as much heat can escape from one's head, along with those stay at home furry socks?

On your sleeping issue, you might ask the doctor about a melatonin check?  And how about your cortisol level, I wonder if it is high what with all the stress you've been through lately?  Are you avoiding exercise at night, avoiding the computer at night, avoiding eating two to three hours before bedtime, doing something restful before bedtime, like listening to some relaxing music and settling into a good book that isn't too much of a page turner?

On the balance front, I'm wondering if it is surgery related.  But I think even if it were, it might be worth pursuing some physical therapy to strengthen your vestibular balance system to try to compensate.

You've got some positives going for you, like your age (we are almost the same age!), your faithful exercising, and a healthy weight with your thyroid condition evidently being managed well.   You have come through a lot already, with all those surgeries and are still here for your daughter!

There are life style adjustments I've made, as medications haven't worked out for me.  Things like walk slow after a larger meal, sit around after pancakes with syrup, sit on the edge of the bed before rising after sleeping, use a shower chair and don't reach above your head too much, etc., pumping my calf muscles at times, etc..  I know it's hard at first adjusting to this dysfunction, but a person kind of gets used to it after a while.  No real improvement with the P.O.T.S. over when I first got diagnosed.  My most recent holtor, my heart rate got up to 160 with getting up and being up at one point (didn't sit on the edge of the bed first for the monitor test) and was over 100 almost every hour of a 24 hour periods.

[zygy2]

I agree with you, the surgeries made this much worse.  I had decompression for Chiari and then had two knee surgeries about two months apart, then had complications from the first decompression, had a pseudomeningocele repair and that went really wrong because they did not know the patch was stuck to my cerebellum so I had a third emergency surgery to fix things... it was a long year.  Although I thought I had mild pots before all  of this, it is just so much worse now.  

It looks like this will not be an easy answer and I appreciate knowing that before I go to my PCP today.  At least I have a starting point.  I just want to feel like me again!  Through everything I at least felt like myself and now I am just getting so frustrated that I just crave that normal feeling day so badly.  I will have to check my temperature more but I have always been a very cold person but this year  I am so cold it hurts.  I have a heating pad near the couch, I have a heated blanket on my bed, I layer up each day and still feel frozen and once I am cold it takes a small miracle to warm me up... I do run a lower temp than the typical 98.6 but I have always assumed that it is just a normal thing.  My daughter runs low too and when she gets to 98.6 she usually does not feel well so both of us with a small fever feel terrible.  I am only 40, I am a healthy weight, I do my PT stuff daily and walk on the treadmill at least a mile a day and I just can't get myself feeling good.  If I even get up at night to use the bathroom I have to turn my electric blanket back on to warm up again before I can try to go back to sleep ( I keep my house at 65 at night, it is not like it is freezing in my bathroom).  The "COLD" thing might seem silly but it is one of my biggest complaints because it keeps my muscles tight and my neck and back stay sore even with all my PT exercises!  

I have ALWAYS been borderline anemia... as long as I can remember but never felt this bad.  I just can't seem to keep a good iron level and have never found an iron supplement that I can take because my stomach does not like it at all.  I also have a slow system and iron does not work with a person that has a slow digestive system... it just makes life worse!  I am highly sensitive to medications and supplements.  I try to take as little as possible for medications!  I am on synthroid for my hypothyroid but I had those levels checked again and they were good.  

I don't think dehydration is an issue.  I have really increased fluids and other than my morning tea I keep away from caffeine.  I do like hot beverages because I am cold but I stick to decaff :)  I don't think my heart rate goes up at night, unless i just don't notice it.  I have no idea why I toss and turn at night.  The balance I just want to figure out because I still have a pseudomeningocele and want to make sure it is not causing any of my issues!  I am trying to avoid another surgery.  I had damage done to my cerebellum which was why I had the emergency third surgery, I could not even walk without holding on to someone at first but it has improved greatly and that is why now I can't quite tell if it is balance or light headed.  It is minor compared to before but it still bothers me.

7 Years is a bit spooky.  I really really hope I find an answer.  Do you take medications to help you with your POTS?  Have you improved at all since diagnosis?  I don't want to think I could feel this way in seven years.  I am so sorry you have had to deal with this long term!  Thanks for all the information, you sound like you really know what you are talking about.  I will let you know how today goes for me.   It sounds like it will be an appointment and a referral but at least it will be a start I guess.  

[LivingInHope]

P.S. Was it for Chiari's malformation you had the surgeries and if so, does this last surgeon feel the problem was corrected?  If I remember right, someone had me ask for an MRI for this malformation (it was ruled out for me) due to migraines and rapid heartbeat.

[LivingInHope]

It sure sounds to me like the anesthesia set this off!  Ordinarily, you should not see 120 pulse while lying down with P.O.T.S., but with the anesthesia and trauma of surgery and likely medications post surgery, those need to be taken into consideration with those initial pulses in the hospital.  For example, post hysterectomy, I had a high pulse and BP in the recovery room, and because I had a reaction to pain medication, was given benadryl which spiked pulse and BP higher and they had to give me a little labetolol to counteract this.  I also learned with migraine that nubain shot would set my heart into over drive.

  It now sounds like you very well may have P.O.T.S., as your pulse you mention is more normal when sitting, but goes up more than thirty beats a minute with standing.  But if you want to be properly and officially diagnosed, you might ask your PCP for a referral to an electrophysiologist (special kind of cardiologist) to get them to conduct a tilt table test and also, see if your PCP is willing to order a standing norepinephrine blood test to be done (see if over 600 if I remember right).   I only got the tilt table myself and some random adrenaline/noradrenaline (norepinephrine) and their inactive metabolite counterparts (metanephrines) where there were outside normal range readings here and there myself.

Feeling cold has been described as a symptom of some with dysautonomia.  Is your temperature normal or lower than normal when you feel this way?

Other thoughts:

Also, you said you are taking your blood pressure- but are you checking your lying down (try ten minutes) and standing blood pressures (waiting one to two minutes after standing to take BP) to see what those pressures are doing to make sure you are not suffering from orthostatic hypotension at this point?  One cause of orthostatic hypotension can be dehydration, so if you do have a drop in blood pressure that does not stabilize or actually go up with standing, you may be having a different form of orthostatic intolerance than P.O.T.S..  One of the causes of orthostatic hypotension can be dehydration... have you been drinking enough since the surgery?

Also, did you have much in the way of blood loss during your surgery?  If so, and particularly if you also are still having menses as well, you may want to be make sure you are not suffering from anemia, not only asking the doctor to check a CBC, but doing a ferritin (good picture of iron stores) and iron panel which includes iron saturation percentage as well.  Iron deficiency anemia can cause tachycardia, cold feet and hands, light-headedness, fatigue, shortness of breath and more.

Re: your trouble sleeping leads me to think you want to get a holtor monitor recording (or at least your pulse monitor) to see if your pulse is actually still fast while lying down.  In which case the cardiologist may consider what type of tachycardia you have.  It is discovered to be S.V.T., that is different than plain old sinus tachycardia and an electrophysiologist may give you some suggestions on that (ie prescribe no caffeine, inc. chocolate, possibly prescribe medication, and if unresponsive to conservative txs, there is another option).  But if it is sinus tachycardia while you are lying down keeping you awake, they might decide you have I.S.T. (I've been diagnosed with both I.S.T... that one first and P.O.T.S. myself).   A fast heartrate in bed can keep a person awake!

Your tipping, unless it is related to orthostatic intolerance (light-headed pre-syncope feelings)... I wonder if it is related to your surgery.  You might also consider vestibular testing with an ENT doctor re: balance issues.  

If you are having very high spikes in your BP when your heart is racing like this and if you are sweating and getting headaches, they may want to rule out a rare tumor called pheochromocytoma, usually found on an adrenal gland.  These tumors can even intermittantly cause high catecholamine levels.  One of the best tests for ruling it out is plasma free metanephrines, a fasting blood test.

They also may want to rule out Addison's if you have low blood pressures & check thyroid function to make sure you are not hyperthyroid, particularly if you've also had weight loss with the rapid heart rate.

They say when a person has P.O.T.S. that sometimes, it can go into remission.  If you do have it, I hope that happens for you!  I've been dealing with the diagnosis for over 7 years now, so if I can be of any help in the future online here, don't hesitate to let me know!