Jump to content

Newly Diagnosed with POTS and Struggling


Recommended Posts

I am newly diagnosed with POTS and take propanolol and drink electrolytes to try and manage my symptoms.   I have labile bp, arrhythmia and GI issues.  My Dr also thinks I am hypovolemic.  I am going to Mayo in a couple weeks to see their specialist.  Is it typical to still feel weak, shaky and nauseous even if my vitals are decent (with decent meaning my pulse comes down to 90-115.)  I also started bouts of profuse sweating and the flush I get on my forehead and cheeks started feeling like a painful sunburn.  I feel like I am getting sicker and weaker as the days go by and it's really affecting my job.  I'm on intermittent FMLA but that will be ending soon.  I'm so worried about losing my job.  Because of it I have insurance and income to seek treatment.   No matter how devastating losing my job would be I feel too sick and weak to force myself to go.  I can't even do the grocery shopping anymore,  I can barely take care of myself right now and this is putting extra pressure on my husband.  I don't know what else I can do to make things better.  This is a heavy load to carry and the unknown is so scary.  I actually broke down and cried last night.  I know you've all experienced these hard times,  what did you do to push through it?

Link to comment
Share on other sites

I'm so sorry you're going through all of this. Horrible as it is to write, these weird things you describe seem common or at least not unusual with POTS. I've had POTS for at least 10 years. The only thing encouraging I have to offer is that my symptoms tend to wax and wane on a relative scale. Even if I'm bedridden for a while, I've always eventually gotten up and functioned on a better level for a while.

But I'm 67 and have a lot of other problems so they're probably influencing my ability to function. A lot of younger people with POTS get better or are considered cured. 

I would be very interested to hear how your visit with Mayo Clinic goes.

Link to comment
Share on other sites

Hello @POTSie78 - yes, the unfortunate scenario you describe rings a bell for many of us! i too had to struggle staying employed and ended up using up all of my FMLA. I was absolutely devastated when I was told by my employer, my doc and my family that I had to stop working. I was the bread winner of the family, and without my job we would all end up without insurance and income! But it worked out, as things tend to do, and I was lucky - I had short term and long term disability insurance that paid 60 % of my pay. 

I agree with @toomanyproblems - our symptoms wax and wane. I was completely unable to do anything until I found proper treatment, including IV fluids via my port. I am still disabled but now am a lot more stable. You too can find a lot more stability and relief from many symptoms once you are on the right meds. Be patient - hang in there until your appointment - it WILL get better!

Link to comment
Share on other sites

I've had POTS for nearly 20 years (I've been severely affected since I was 25) but I can still remember the first few years really clearly - I went from being "normal" to completely bedbound within the space of about 6 months and it was terrifying, all the more so as no doctor I saw ever knew what was wrong with me and I was dismissed as just being depressed or anxious.  I went from earning a really great salary to living on benefits (which I was really grateful for).  My fiance stuck around for about 3 years and then he left as well and I was too ill to manage on my own so I had to return to living with my parents.  So within the space of a few years I'd lost my health, my career, my relationship and my home..... and a lot of so-called friends didn't stick around either!  I'm telling you this not to scare you or to make you feel sorry for me but to tell you that despite all this I got through it and so will you.  Many people with post-viral POTS make full recoveries and most POTSies find some meds to help them lead relatively "normal" lives.  Bear in mind as you are reading the forum that it is mostly those of us who are most severely affected and the newly diagnosed who post most as other POTSies are too busy leading their lives to post a lot!  I'm one of the unlucky ones - my  POTS is caused by hypermobile Ehler Danlos Syndrome which means my veins are too stretchy and cause blood to pool in my feet and hands and as hEDS is incurable there is little chance my POTS will vanish!  I've not found any meds to help either so I manage solely on vast amounts of fluids and salt, as much exercise as I can tolerate and compression tights which keeps me out of bed but not much more than that!  

Try to just take it one day at a time and not worry about the future, stress just makes our symptoms much worse.  You are already on the right path, you have a diagnosis and you are seeing great specialists who will, God willing, be able to help find a treatment that will help you.  Things will not always look this bleak, believe it or not but you will get used to living with dysautonomia and the symptoms that are so scary now will become almost commonplace.  Try to stay as active as you can - keep doing small amounts of exercise sitting or lying down but don't make my mistake of taking to bed - it is much harder to build muscle back than to maintain what's already there.

All the symptoms you describe are typical of dysautonomia - and yes, I sometimes feel just as bad when my HR is 120 as when my HR is 160+ - usually when my pulse pressure (the gap between your systolic and diastolic) is very small - anything less than 25 is considered bad and mine is sometimes as low as 12.  At other times it's just due to my BP jumping all over the place!  The sweating is horrible - I suffered in silence for years as I was really embarrassed until one day I mentioned it to my GP - she prescribed Driclor, a prescription strength anti-perspirant which has really helped me - I still feel the waves of heat when I stand but no longer have the wet patches that I had before.

Feel free to send me a PM anytime you need a chat or a moan! You are not alone and you will get through this...  

Link to comment
Share on other sites

thank you all for the encouragement.  My Drs seem to think this is related to my spina bifida because I have had numerous issues since birth that no one has been able to put their finger on.  I've had a lifetime of GI, kidney and bladder issues.  Fainting spells and arrhythmia since 5th grade.  Last year my gallbladder quit and now this.  My Drs keep running blood tests and MRI of my neck but they never want to look at my lower spine.  4 years ago I was in a car accident and had severe whiplash and concussion and since found herniated and bulging discs in my neck. My PCP just told she could put me in the hospital and treat me with fluids. I would prefer to try that at home.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...