Just Dx'd With Pots And Overwhelmed...tips? How Do You Cope?

[tgleiker]

Hi, All

I am new to this forum, but I am soo thankful it is here! I have had some different chronic illnesses and health challenges throughout my life, but just since about December my whole life feels like it has been turned upside down...

It started with chronic nausea, night sweats, abdominal pain and discomfort-- in February I got bronchitis, laryngitis, and pneumonia and was out of commission for about two weeks, but other than that I was driving every where in the East Bay (I live in Oakland, California) for work, taking care of my household including my husband and 3 boys who live at home (8, 3, and 1) until the end of April.

One night in the beginning of March I was talking to a friend outside of church and I felt as if a baby had kicked me and then felt a bulged spot on my right side and had some pain but knew I wasn't pregnant. I had a doc appt the next morning for something else so asked her about it then. My doc checked me over and I had several tests over the next month (ultrasound, liver biopsy, hida scan, etc). I was told I had severe fatty liver disease (non-alcoholic) that had happened in the course of two years, as well as a low functioning gallbladder. Docs thought that my gallbladder issues were probably causing a lot of my abdominal pain and my chronic nausea so recommended I get it out. I had it removed on April 27th and I seemed to be recovering just fine which was amazing to me coz I've always had problems with things, but then five days later on May 3rd I all of a sudden got severe abdominal pain and ended up going to ER that night coz they wanted to rule out complications from surgery. CT scan came back fine, and the only issue was that my liver enzymes were really high- higher than they should have been post-surgery, but they didn't do anything about it. BUT, what they didn't investigate was the presyncope episode I had while in triage. I was sitting there and all of a sudden the nurse asked my husband if I looked pale and he said yes. I noticed I was extremely nauseas (totally sick to my stomach and quesy), dizzy and lightheaded, I was soaked in sweat, and I did not feel well at all... The nurse checked my pulse and barely detected it and my BP was like 50/30. He rushed me to get an EKG, but when they got my into the bed, I was fine. We brushed it off as a fluke because I had never experienced it before...

But, that was the start of it all-- since that time my life is completely different. I can't stand or walk for more than 5-15 minutes depending on the time and can't sit upright for longer than about 20 minutes before I start to get presyncope again... My life stopped dead in its tracks. My faith and my family are the only things keeping me going. Since then I have had more symptoms develop especially in the last 5-6 weeks-- a chronic low-grade fever every day, polyneuropathy in my feet and now starting in my hands too, migraine headaches weekly that last 2-3 days, some blurry vision at times, fatigue, reduced sweating, etc. It's been pretty awful....

I have gone through so many tests it's crazy, as I'm sure you all know and the last person I was finally referred to after I was diagnosed with Orthostatic Hypotension was my neurologist. He determined that I likely had POTs when he realized that my HR was increasing upon standing. I was diagnosed two weeks ago today by TTT (man which I'm glad I got a fast dx because it seems like for so many it can take years and I thought mine was long). Luckily my BP hadn't dropped because of the increased salt my neuro had already started me on so I didn't pass out, but I started shaking and feeling horrible at the end of it. My HR went from 77 to 148. My neuro doesn't know much about POTs so I am being referred to the Autonomic Center at Stanford, but won't be able to see someone there until September:(

So, that is about me, but how do you all cope- day-to-day? Do any of you have kids? How do you approach it with them? It has totally affected my kids and my husband already for sure...How do you take care of things daily?

For electrolyte/salt increase I got these great NUUN tablets that you put in water -- they work pretty well and they taste pretty good rather than just salt tablets, and my neuro has started me on Midodrine but it doesn't really seem to be helping-- I love baths so I usually take them rather than showers, I bought a regular size reclining seat that I take with me to go to church and outdoor places, I cook dinner in 5-10 minute increments lying down inbetween, and lie with my kids on the floor to play with them. But, I can't really take care of my 1 year old for too long at a time because he needs a lot of up and down.

What do you all do to modify things? Is it similar for you in not being able to sit upright as well for a period of time? Do you drive? How do you do things like getting a haircut? Any tips for making life a bit easier with all this?

[Katybug]

Hi prov31mom,

Sorry you have been through these struggles. Just so you know since you're new to this, the polyneuropathy and whatever is causing that, may be what's causing your POTS. Neuropathy is often the underlying cause.

There are many things over the years I have learned to modify, make more efficient, find a work around. I will do a search and post some links here later this evening for you on this subject so you can see what other members have come up with too.

[Katybug]

http://forums.dinet.org/index.php?/topic/26706-what-tips-tricks-apps-programs-and-so-forth-help-you-manage-your-symptoms/

http://forums.dinet.org/index.php?/topic/22909-chores-and-pots/?hl=%2Bhow+%2Bto+%2Bcope

http://forums.dinet.org/index.php?/topic/25740-ideascoping-please/?hl=%2Bhow+%2Bto+%2Bcope

http://forums.dinet.org/index.php?/topic/26647-pots-flare-up-how-to-get-it-under-control/?hl=%2Bhow+%2Bto+%2Bcope#entry248169

[SarahA33]

Hi Prov31mom,

I wanted to take a quick moment to welcome you to DINET.. You must be feeling unwell today after having your Tilt, I remember feeling so poorly after mine.. and you've got 3 kids to take care of, I don't know how you do it! You deserve a metal or something! Its totally normal to feel overwhelmed, I'm overwhelmed a lot. I think its been important to constantly keep redefining my goals -- I'm a goal setter, so I didn't stop setting them, but I readjusted them to short term goals instead of long term. And I also remind myself almost on a daily basis to be kinder to myself, and that we're all just doing the best that we can with the cards we're dealt!

I unfortunately overdid it today and the room is spinning, so I have to lay down. But I will write some more tomorrow.

Sarah

[dancer65]

Hi

I agree its easy to feel overwhelmed especially as a wife and mother! I think it is about accepting how you feel each day may be different. As a very active person I found it hard not to get frustrated then upset at the lack of things I could achieve, I realised reacting in that way was actually making me worse. Once I accepted the situation and stopped beating myself up about it, I started to learn how to cope. It took months before I could manage menial tasks, slowly I have been improving and I now back to full time work. Here are just a few simple things that helped me with some things we did to help me with basic tasks, often I cant finish a job but I am more accepting about that these days.

Important tasks are done at my best hours of the day,I have a must do list otherwise I forget

My husband rearranged frequently used items in my kitchen so I didn't have to bend

Resting places placed around the home for if I feel dizzy

He put a table by the washing line and lowered the line as hanging washing gave me pains in my arms

I have a steam press which means I can sit to do this (I tried to iron sat down but cant) I run the fan to cool me down as I get overheated! so I only do a little at a time

As I have returned to work I have rest periods throughout the day, I don't eat big meals but graze which I have done for years

Accepting that I have to delegate and in actual fact hubby is very good at house work!

Never say no to an offer of help from family or friends, those who offer help really do care, there are precious

Stay positive Learn to love yourself again!

I hope these don't sound like silly suggestions but they helped me to feel useful again and gradually build up stamina. Please excuse any grammer or spelling mistakes feeling a bit off today after TTT .

[tgleiker]

Thanks so much ladies. These are great tips. At this point it is hard because I can't sit upright for longer than 20 minutes so have been figuring out how to modify things to be able to do them in that time or reclining.

Are you able to drive? I haven't driven because I'm afraid of getting dizzy. We figured it out that I can probably drive a few minutes in our neighborhood and then stop and recline my seat and pause before I do what I need to for a few minutes and then do the same again before coming home, but I am scared to drive on the highway to get anywhere else as it's not that easy if I were to need to pull over.

.

I got an MRI last night because of my migraines and oh my, that was crazy and really messed with me. The loudness and intensity of the vibration was hard crazy.

I really appreciate this forum already so much. It is something that is very hard to describe and explain to friends, and even my husband, but he is super supportive, but I am slowly trying...It helps to know there are others in a similar boat- thank you!

[Katybug]

When I first stopped working, I was in such bad shape that I stopped driving for a while. I told my doctor I felt like people weren't any safer driving next to me than they were driving next to a drunk driver.

As I have gotten some of my symptoms under control, and also learned my limits and my warning signs, I have been able to drive again. First within about 5 miles of my home, and then, over time, I have been able to get back on the highway.

There are still days when I can feel that driving isn't safe and so I stay off the road. But most days I can at least drive close to home for a grocery or pharmacy run.

[tgleiker]

Thanks Katie. That gives me hope for the future!

Tara