POTS questions?? Heart rate making me crazy!

[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 Chiair POTS people would be greatly appreciated. -zygy

[zygy2]

Very interesting!  Did you have low or high blood pressure?  My pressure keeps increasing the longer I stand.  If I am sitting or laying down it stays normal.  I will have to keep this in mind as I try to figure things out,.  I am terrified of another surgery even for a shunt, every time I have surgery something goes wrong... it has been a long process.  I am having the pseudo checked again in March with an MRI and another meeting with my NS.  

[Tracysiller]

Not sure if you've seen this page..... Read number 22
Www.chiariconnectioninternational.com/doctor.php#22
I had my shunt put in two weeks ago and I'm not having any more heart issues.  My NS said pseudo was pushing on medulla.
Praying for you. Keep us posted.

[zygy2]

Thanks guys!! It is just nice to hear from  people sometimes!  Linnielou, the surgery thing is really interesting because I thought I had POTS before my decompression surgery but not to this extreme!  In addition to three head surgeries in a year, I also had two knee surgeries in between them... it was a very long year!  Maybe it was all those surgeries that made it so much worse.  I can't remember back far enough as to when i think this all began but around the time I was thinking Chiari I was also thinking POTS.  I think when you are raising kids you just assume that is why you are so tired :)  Selma-  I know, the people on the posting change a whole lot  :)  Some of us just can't seem  to get things figured out that fast!  I did look through some old posts but it is always fun to find someone currently dealing with the same thing.  I did get a reply in the other spot now and it was a nice long informative response, it showed me I am probably in this for the long haul... more tests and more money.  It would just be nice to figure this out.. I am getting really tired of medical bills.  I am hoping for a family vacation this Summer instead of surgery :)  My hope is that the POTS are the issue and not the pseudo and maybe I will not need the shunt!  :)

[linnielou232]

I read your post and just wanted to let you know what my PCP said.  I don't have POTS but I did have 4 surgeries within a 4 month period and I also experieced the hight pulse rate.  It is pretty scary.  They did do some blood work because I am 48 and though maybe I was now going thourgh the change issue.  All came back normal.  I just wanted to mentioned what they said was going on.  As you having 3 surgeries in a short period of time it actually put's your body into a shock mode.  It doesn't know how to work properly.  Having so many surgeries and the anasteia put's a lot of stress on our bodies which our bodies are not used to.  Mine is getting better.  I don't have the heart rate problem as much now so there is hope just to let you know.  Let us know what the doc say's tomorrow.  If you read this before going ask them if this could be the colput.  As I said I don't have POTS and don't know what this affectes but it wouldn't hurt to ask.  Best of luck with your answer's.

[selmaS]

  It does seem like it is leaning that way....but, u will have answers if it does and a way to move forward and gain some energy back......

I know we did have a few with POTS...the problem is, approx every 6 months to a yr we get a whole new base group here...people just stop posting and we have no idea how they r doing.....

This is y I gave the link to the other group as they do have more POTS members, but not the Chiari/POTS member...u can learn about it and post here so the members have an idea about this.....it helps when it is first hand info....


Good Luck
   "selma"

[zygy2]

:)  Finally got my NS office on the phone, they said to go to my PCP and I am going to an appointment tomorrow.  I have no idea if they will help me or if they will send me somewhere else but I was frosting a cake with my chest hurting and got out my monitor... I had a pulse of 137 frosting a cake... just standing!  I really hope I don't have to go and do all kinds of testing.  I am really thinking this could be why I am  so tired and why exercise is so hard right now... I used to walk ten miles a day and now I am huffing and puffing at a slow pace and a half a mile!  I know the heart rate is too high (170's if I walk ten  minutes).  No activity on the other topic board, that is fine though.  I guess not as many with POTS in here.  I am crossing my fingers that I can get my PCP to listen!!!  

[selmaS]

  I am glad u r laughing again.... : )

And I have not posted in the other forum for quite some time but know the  girls r helpful   and know what they r talking about.

Have u had ur B12 and other vitamins and minerals checked? I started with Magnesium and am not as fatigued as I was b4...so, I know this all plays into it too!

   Keep me posted

     "selma"

[zygy2]

Thanks for the link, I posted in that section :)  There are pages to check out so that will be fun!  I really thought the thyroid must be off to still be this tired, for a while I just thought it was the two surgeries being so close and having such complications but five months later I figure something is up!! Just happened to check my pulse and see how nuts it was and after spending a few days watching it I really do think the POTS is the culprit!!!  I am still happy with things, being able to laugh again is amazing!!  I just can't deal with feeling so tired and not being able to have a real work out!!  I get so exhausted doing the most stupid things.  It would be nice to have some energy again so if POTS is the problem hopefully something can be done to make things better.  

[selmaS]

  Hi, this sounds very frustrating as all issues with Chiari do, but when u had 3 surgeries to get better and something gets worse...it is disheartening too.

I personally do not have first hand info on this, but there is a forum here on MedHelp that I know the girls over there can help and answer ur questions....they do not suffer with Chiari but know all too well how POTS can affect someone.

http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266?controller=forums&action=show&id=266&camp=msc


Check out this forum as well as look to the Health Pages as there are a few pages of info on this topic ( we share HP's with this forum).....

  And share what u do find out

   I pray u feel better soon.