Is It Possible To Make Your Pots Permenantly Worse?

[imapumpkin]

I was diagnosed with POTS two and a half years ago and for the most part have had minimal symptoms other than chronic fatigue and daily nausea among some other symptoms. Then I moved from the northeast to the mid-atlantic for the summer and my POTS has flared up so badly that I can barely go outside because of the heat. I plan to move back to the northeast as soon as I can arrange it...my question is this:

My POTS has never been this bad or debilitating. I feel sick every single day whereas before I was able to function and hold down a job. Have I permanently made my POTS worse by moving here or will I start to feel more functional again once I'm back in a place that's not 95 degrees every day? Is it possible to make POTS permenantly worse through a really bad summer-long flare up or is this terrible bout of sickness because I'm in such a hot environment?

[MomtoGiuliana]

I'm sorry you are feeling so much worse. Definitely for many of us, heat and other environmental factors can make POTS symptoms flare up. It may be hard to pinpoint what is making you so much worse. Are you using any medical treatments at this time? Is there a specialist you can see?

[imapumpkin]

I'm not on any medications for the POTS other than moderate exercise, increase in sodium and fluids. I can go see my cadiologist but not until September because he is not available before then.

I've heard klonopin can be helpful for pots patients and I take it for anxiety, but it really hasn't helped my pots symptoms. I'm sure that the heat is exacerbating the symptoms if not causing them because I feel better on cooler rainy days, and I felt just fine until June when all of a sudden BAM it was 95+ degrees every day and we had that freak heat wave where it got up to 104.

[Dizzysillyak]

You may want to back off the klonopin. My oi/pots gets worse if I take it for too many nights in a row. Tc..d

Eta. I only take 1/4 of a .125 mg sublingual for sleep when needed. Fireworks or loud noises keep me

awake so I mostly take this during loud holidays.

I was able to come off this after 16 years by

changing my diet to remove excitotoxins like gluten, dairy, hfcs and caffeine.

[bellgirl]

How much klonopin are you on? I only take it at night for sleep, .5mg. Are you tachycardic? Any dizziness with your nausea? Some take zofran for nausea. I took it for riding in a car and taking a boat ride, and it worked well for those activities, although I found it to be binding. You may need to see if they can call you, if there is an appointment cancellation with your cardiologist.

[Wendy C.]

I don't know how to answer the permanent damage question, but I do notice that I feel so much worse here in CO on the days when it is hotter than about 88 degrees. We have had an exceptionally hot summer, with weeks of 95+ and I thought I was having another relapse, but then when it got cooler (low 80's), I felt good again. Then, it got hot again the past few days and I haven't felt good again. So, I hope that it is only the heat causing a worsening of your symptoms and that it will get better after the summer or if you move back to cooler temps!!

[FarmerAmy]

This summer has been hard for me, too. I've tried all kinds of things to keep cool. Is it possible for you to spend most of your time in the air conditioning? I even turn on the A/C in my car 5-10 minutes before I have to get in it (wasteful, I know!!!) I also bought a cooling vest. I live in arid Colorado, so I have an evaporative cooling vest. This wouldn't work where you live, but a phase-change cooling vest probably would. I also use a lot of ice packs. I often have one on the back of my neck or I will put them on my stomach or under my arms. I'll even sleep with a few ice packs if the house is too hot. I've also found that I feel great when I go to the pool! It feels so good to get a little activity and my POTS symptoms almost completely disappear when I am in the pool.

I also take Klonopin. I feel like it really helps my symptoms--but it just goes to show that everybody is different.

[Dizzysillyak]

For those bothered by the heat, have you tried treating for candida ? I "think" this may be what's

behind that. It could've been some othrr food intolerance or chemical causing chronic

inflamation too tho. I feel great in the sun since changing my diet. I have to stay hydrated tho.

Tc .. D

[green]

I would think that you could make your POTS permenately worse in a couple of ways:

1) exposing yourself to nerve gas.

2) if you developed a DVT, and the clot went through your legs and ripped up the capillaries so that you muscle pumps no longer worked.

Highly speculative though!

[hippychic258]

Are your symptoms still bad when you are in air conditioning? I am from Ohio and am in Texas for a couple weeks and its 108 here and I am so so sick but I am inside the air conditioning and still sick. What is the difference from Texas to Ohio if I am in air rconditioning? Climate ? Atmoshere?

I thought it was just the car ride but now I am wondering.

[McBlonde]

HippyChic... I think I said this before, but then again I may have only thought it and not had the energy to type it. I am 2 hours from Dallas and my symptoms are really bad here. I went down to the Gulf in Florida. When I left the house, I felt SO bad I thought within the 1st hour that "I can't do this" I can't make it!" By 6 hours further south, I felt like a different person. I could sit up in the car and converse. After a week in Florida, I was SO much better! BUT.... as we came home... the further we got away from the coast of Florida, the worse I felt and I have not recovered since I got home. It's SO confusing. What is it here that triggers me, but not in FL? I think we even had a thread a long time ago about barometric pressure, humidity, sea level, etc.

Imapumpkin..... I don't have the answers for you as to why, (in my case it's not just the heat) but it had been a couple of years since I was in FL and yet when I went there again, I still felt better, so my guess is it's not anything permanent. I think your body will feel better when you go back to where you felt better.

I even tried San Diego because it's so consistent...... but I didn't get the relief there, not like Florida. Still in the La TX area, I a way worse.

Can anybody think of a logical explanation?

[imapumpkin]

Although the air conditioning helps, it's like my body can tell its over 90 degrees outside. I think it may be barometric pressure. I feel much better on days that its in the 80s and I feel a noticeable improvement after the sun goes down. I am near DC, so its a city-type hot in addition to stifling humidity. I took at trip to FL in march and it was in the low 80s and I had no problem, but the second DC started seeing 90 degree weather I got very sick, and the longer I stay the worse it gets.

Today I tried to brave the 90 degree heat to go grocery shopping but made myself so sick on the trip over in the heat that even though the market was cooled, i felt faint and nauseous and had to go right back to my apartment. I know I have to go back to the northeast but the soonest time I can go (I'm so sick there is no way I can drive myself so I have to wait for someone to pick me up) is next Mon or Tues and I don't know how I'm gonna last the next week because each day I feel sicker.

[kayjay]

I was on Klonopin for 3 years. Mayo Clinic Rochester told me that it can make pots worse. Just a thought. I wanted to try it because I read (on this site) that it helped some people. I did sleep better on it ( at first ) and it masked some of my symptoms. I am happy to be off of it now. Elevation affects me as well as heat. Is is possible that you are further above sea level?

[imapumpkin]

I am about 50 feet higher above sea level where I am now than where I usually live..I dunno if that's enough tomake a difference but it might. Klonopin I take for anxiety-- i've been on it for 7 years and only have known about the POTS for 2.5 so I'm not sure whether its contributing to the situation; I'm inclined to say it is unrelated. Basically what has changed between my old environment and new:

-Much high humidity and temperature

-new job

-switched from a job on my feet to a sedentary desk position.

-severe stress caused by major move, new job, anxiety, and relationship issues.

Does emotional stress make POTS worse? Because it's like a vicious cycle. I get stressed, my body feels sick so I get anxious and more stressed which makes me feel sicker.

[McBlonde]

The bad thing is that ANY kind of stress can make POTS worse, good stress, bad stress, emotional, physical, ....because of our body's physical over reaction.. You have had a lot going on plus, the hot weather and the higher sea level would have done me in! I don't think it's the Klonopin.

[bellgirl]

I agree with McBlonde...the stress is what puts us over the edge. Sedentary is never good either, even though I know you had to be tired on your feet working. Exercise is the key to success with this for most of us, if it can be tolerated. It really helps with cardiac return . Calf muscles built up are so important to prevent blood pooling...