How Do You Live Your Life?

[andybonse]

Hello,

Since diagnosed with POTS, I haven't really gotten anywhere apart from being prescribed a beta-blocker, which I am not going to try since I understand blood drops downand the heart beats faster to bring it up, so clearly a beta-blocker would make this worse, without any testing of course to prove this is correct.

My Cardiologist is aware of POTS but not really too knowledgeable in the area, so I am in the UK and trying to find someone who actually can help, seems hard work :/.

My symptoms:

Blood pressure sometimes goes between 90-110 but can go up to 130's when standing or sometimes it doesn't move at all, its really variable.

Heart rate increases, resting HR 58-70 rises to 90-110, usually 90-95 though.

Head feels light when I first stand and feel my heart beat harder and adrenalin in chest

Sometimes my symptoms are non-existant, lucky days.

Heat triggers off symptoms

I have been off of work 7 weeks, no where near thinking of going back, I dont go out as I feel weird and scared of fainting(never fainted before though). It's taken my life over really.

-

How have you changed since POTS? Do you still go out? Do you ever have alcohol? Whats changed?

Have medication made your symptoms bearable and able to function normal and go out more etc?

Just trying to find some answers, its like nobody knows and nobody can help and this is it.

[Lethargic Smiles]

It is so hard to adjust to the changes dysautonomia can bring. I had a lot of trouble in the time period after I had to quit my job. I had just graduated college and gotten a dream job. It felt like the girl I was died and I was mourning her death. For me, the best coping mechanism is the support of my family and friends.

I write all about how I cope on my blog. Here is a page devoted to what helps me cope: http://lethargicsmiles.wordpress.com/coping-with-illness/having-a-chronic-illness/

[andybonse]

I am trying my best to feel ok.

I'm scared after reading about Mast cell disease, sometimes my face goes a little red but that can be normal also, I get a red chest when I get hot but thats about it!

[Ash]

Hello Andybonse, I am sorry you are having to go through this. I was officially diagnosed withPoTS February 2012. Since then it has been a constant learning curve but I have found at least for me that it does seem to get a little easier. When I first got diagnosed I had a 24 hour Holter monitor test done during that test I was unable to get off the couch, my highest heart rate I think the whole test was 130 granted that was just getting off the couch to walk to the bathroom. A year later I redid the Holter monitor test and over 24 hour. I cooked dinner, did a little house work, went out and fed my horses and lived the life that I have learned to live with since having pots. My cardiologist walked into the room when he gave me the results of the test and asked me what I thought my highest heart rate was over the 24-hours. I told him that I don't take my heart rate as often as I used to but I would guess somewhere around 155 (since that was the number i saw when i did decided to take my HR) His response was shock he said not only had my heart rate hit 180 once but it got up to 180 multiple times throughout the 24 hour period. And he is asking how I functioned with a hr that high where a year before when I did the test I wasn't functioning at all at 130 bpm. So I told him which is probably also one of the biggest things I can tell anyone first diagnosed with Pots is overtime you just learn how to live with it you don't necessarily feel a hundred percent better or like you did before you got sick but you know how hard you can push yourself before you crash. In the year, well over a year now since being diagnosed I have learned that it takes a lot of water and a lot of salt, That as much as you want to lay on the couch you have to push yourself to slowly get off the couch even if it just means walking to another room to lay down, you also have to know that there's going to be days or weeks when yes you don't leave the couch but over time you can learn to "manage" some of your symptoms. It used to be for me that as soon as I stood up and I got dizzy I laid right back down and now although I still get dizzy when I stand up I know that it's coming and that it is not necessarily going to "kill" me so I push myself through it and over time I just almost learned to ignore it in a way. A year later I know that I can't spend hours outside in the heat but I do go outside for a hour or two and I do do things with my friends, I know that if I wanted to go out and spend an evening with them, I need to take it easy in the afternoon and the next morning. I have had some drinks since getting diagnosed and for me it's not worth drinking because I don't feel very good when I do but I do think there are a lot of people that do drink and are okay with drinking with pots. I know it can be really discouraging especially in the first few months of getting diagnosed. Just try to hang in there and know that over time you might not get your old life back but you will get a new type of life, that in time you will learn to love and be okay with. I do work three days a week as a dental hygienist and I have tried lots of different medications although I currently only use them if I absolutely need to because we are trying to have a baby.just know that PoTS doesn't have to be the end, you have made a great first step, there are a lot of really caring and knowledgable people on this board who will help you get through this crazy journey.

[khaarina]

I've been disabled with POTS for two years and two months now. I had to stop working and quit college with just a few classes left. My husband has taken on all the errands and he and my two kids do most of the housework. Not being able to work has made it difficult to continue my search for better treatment options and I often can't afford things I need like compression stockings and medications, but I work with what I've got the best I can. I didn't drink much alcohol before I got sick, but it is out of the question now. I had recently moved to a new state when I got sick and did not yet have any friends. Now it is unlikely I ever will. Being sick and having friends doesn't go well together. I get cabin fever a lot. I can go to movies, but that gets expensive. Sometimes I go with my husband to the grocery store or the mall, but I usually end up on the bench waiting for him to finish up. I have heat intolerance and live in Florida, so summer is the worst. Most days, I have to just lie around and try to keep my symptoms at bay. I read a lot. I watch tv, play video games, etc., but screens hurt my eyes and give me headaches, so even those things are difficult to do. I deal with a lot of emotions because of my illness, mostly hopelessness, insecurity, and feeling useless. I don't talk about it much to people in real life because I don't want them to see me as useless.

So that is basically how my life has changed thanks to POTS. I know it sounds depressing, but not everybody with dysautonomia gets it this bad. Even if you do, you will adjust. People can adjust to just about anything. For a long time I thought my life was over, but after awhile I started appreciating the little things like watching tv with my husband and hanging out with my kids. Now that I am pretty sure my condition is not going to get better any time soon, I have started to make new plans. For example, I am thinking about finishing my degree online and I am looking for an affordable wheelchair so I can do more things like go to museums, zoos, etc. There is a comic con coming up in my area and I have always wanted to go to one, so if I can get a wheelchair in time I will get to go. The trick is making sure you have something to look forward to every day, small things at the end of each day and long-term goals too.

[jangle]

It depends on the severity of pots you have. For me my symptoms are more mild in comparison so I live my life about as I would without pots just dizzy and uncomfortable. Three treatments I have found useful are florinef, ssris, and exercise. The combination of these treatments has made my symptoms even more mild.

[Freaked]

Well, I've been debilitated for four months; it's taken this long just to test for some heart stuff I was afraid of because my cardiologist was so hard to keep in touch with. Don't have my tilt table scheduled till the end of July, so...yeah.

[khaarina]

Yeah, getting diagnosed and treated for POTS is really hard. Most doctors just don't understand autonomic disorders. It took my docs over a year and a half to start thinking about POTS. Before that they were clueless. They just kept putting me though test after test and sending me to specialists. I found out a lot about all the illnesses I don't have. Then out of nowhere my primary doc just figured it out and told me to get a ttt. It looks like you have a head start, but it will still be a long road. Everything about chronic illness seems to take forever. We are always waiting to get into see a specialist, waiting for a new medication to work or fail, or waiting to get test results. Try to be patient, but don't stop persuing the right diagnosis and treatment. I don't know how the health care system works in the UK but if you can avoid it, don't stick with doctors who aren't helping you. I made that mistake a few times and it slowed down my progress a lot.

[andybonse]

How do you know if its Hyperadrenal or not?

My systolic BP usually goes up when I stand up, but then a few minutes later it comes down and then up then down lol.

[Lethargic Smiles]

To find out if it is hyperadrenergic, they do an Endocrine Test and look at your dopamine, epinephrine, and especially your norepinephrine levels. Here's an explanation of how it goes down...

1) Put in IV (this is to draw blood later without triggering stress hormones in reaction to the poke)

2) Leave you in quiet dark room for 30 minutes (this is to let you relax and your stress hormones come down)

3) Quietly come in and take blood sample

4) Have you stand up/walk around for 10 minutes

5) Take another blood sample

The doctor will compare your relaxed and laying flat versus the upright results to see how much your norepinephrine levels increase. My doctor at Mayo said it is normal for it to double. Also, high starting levels can indicate other problems sometimes. Mine was on the low end when taken lying down but skyrocketed when I stood up.

Different doctors have different definitions of what qualifies as hyperadrenergic POTS. Some say you need hypertension plus high norepinephrine with standing in order to have it. Others say all that is neccessary is high norepinephrine. Someone recently posted an article from Vanderbilt's Autonomic Center that said the type isn't all that important in treatment.

[andybonse]

I see, I wasnt offered testing.

Have you tested for mass cell activation disease/syndrome at all?

[Lethargic Smiles]

My local doctor didn't do the endocrine testing, I had that done at Mayo Clinic's POTS Clinic. I haven't been tested for Mass Cell Activation. I'd be interested in learning more about it. Dysautonomia runs in my family with several members having had POTS or EDS. I'm the first one to have it so significantly alter their life.

[spinner]

I guess I live life "deliberately". Insteaad of just doing what i feel like doing, I think it through carefully.

What do i have to accomplish today? How much strength will that take? What time should i eat?

How hot will it be? (i suddenly like the weather channel). How much have i had to drink?

If im excercising how hot is it? Should i swim instead? If im walking i always walk uphill in case i need

to walk back (downhill). If im biking i make sure i can coast home if needed.

I rarely make plans ahead, im spontaneous in case i dont feel well that day. People dont understand.

I NEVER go anywhere without my satchel that contains gatorade, aspirin, and clonapin.

And I rarely go anywhere thats more than a half hour from some sort of medical facility in case

i go into a nasty flare or event that could potentially cause problems.

I dont fly anymore. In short, everything is thought through, but i dont let anything but the heat stop

me from doing what i want to do.

[Rachel Cox]

As hard as it is, I think we have to strive for balance between the inward focus on what is wrong with us, and the outward focus of getting on with as much as we possibly can. Over the years, I have found that I have to monitor how much time I spend here, and elsewhere online, reading and thinking about research and the nuts and bolts of my condition. It's true that it is my own research that has driven the best treatments I have received to date, but I find for me, it's important to have other distractions for my mind. When it becomes all I am talking about, I take a break from the forums and pages for a while and try to focus on other things. I never get to take a break from the experience of what is wrong with me, but I have learned to practise a different habit of thinking. I think it is really good for me to force myself to push through. I do it for the sake of my kids and my man. I strive to create great memories with them, often at big personal cost, but nothing is more worthwhile. I often think that I have been given a gift. Of conscious awareness of the preciousness of health. I observe the health of my family with such gratitude and try to find vicarious joy wherever I can. Sometimes that is impossible, but it is a happier mindset than being inwardly focused. I hope you find the pathway that works best for you and get to find some happiness in there too.

[Birdlady]

Many years, I spent almost all of my time researching. I was so sure that I would find that one thing that would make me better. I'd get that one special test done or try some special treatment or supplement and then everything would be better. Well that did not happen. I have been at this for about 8 or 9 years now. I had to walk away from all things research and even this forum as well as even stop talking to some of my sick friends. I just needed to get a new perspective on this and that is when I decided to listen to God. He has told me, he is going to heal me, so whenever I have energy I channel it into knowing him instead of knowing POTS or knowing a diet or knowing some other medical research thing. Getting to know my sickness became so unhealthy at times. I could really relate a lot to what Giraffe said. You have to find peace and live in a place from that peace. Now for me that is knowing God and seeking him. I know for some, they do not subscribe to this because many think that God actually gave them their sickness for some reason. I believe that God is good and not putting sickness on his children to teach them, so this is where my journey has taken me now.

God bless and take care!

[futurehope]

"How do I live my life?"

By the grace of God.

[looneymom]

Hi Andy,

POTS does change your life. Some people handle it better than others but I think if really depends on how severe your symptoms are. The cardiologist has told me that it will probably be a long haul with my son's POTS condition. He is on the severe side of it.

The best advice I can give you is plan your day and be prepared that you may have to slow down. Be proud of what you can do and get accomplished. Hopefully with the right medications, exercise, and other therapies your doctor may want to try, you will find the right combination and get your life back.

[Lemons2lemonade]

In my opinion, dealing with pots has a lot to do with medications and discovering which are the best for you. For me, going through that process was really bad but in the end, i sort of got my life back and it was worth it. Sometimes things have to get bad before they get better is what someone once said to me....best advice i ever had. However, if you have pots denying it in my opinion, does not help. Sometimes, we come to a point where we have to make a decision of what kind of person we want to be, and for me, it was testing the waters and medication helped me significantly in the long run.