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Posts posted by Lemons2lemonade

  1. Hi Holly,

    First off, i can totally relate to what you are going through right now and had a similar beginning myself. I went through 3 of the worst months of my life before i began to get control of things. I actually sat in a cardiologist office once and refused to leave until they helped me, at that point i was on the brink of consciousness from moment to moment-- palpitations and the whole shebang. 

     Something that helped me a lot was biofeedback to stay calm.  For me the ability to stay calm and remain calm was the first hurdle i had to cross. I also had to train my brain to recognize that this is real life whether it feels like it or not. This might sound lame but i kind of just ignore it--if i focus on things too much or acknowledge that my perception is completely weird and off it gets worse. After i was able to achieve that--and it took a lot of self exploration and dedication to learn--i slowly began to reintroduce small amounts of exercise. Even if it was just lifting my leg up and down on the bed 5 times. For me the trick with exercise was little by little. As an athlete i wasn't used to that type of slow training--i used to just push through workouts. Pots for me is kind of like a tango--if i move with the ebb and flow of it things go well. If i try to overpower it with sheer force, i always get a negative consequence. Overdoing it would knock me down for days. After i got my tachycardia under control, i began swimming and it really helped propel me forward out of my physical plateau.

    Another thing that seemed to help me was a period of rest. Maybe you could spend a week with someone to help watch your kiddo and just rest? This means no tv, electronics, stress etc. Maybe even limited talking to other people. Idk, it did wonders for me to just be alone and silent in a room by myself. Maybe use some vacation time or fmla?


    I hope that helps and i am so sorry you are experiencing this. Never give up on hope.  I really thought my life was over. Today i can walk anywhere i please and swim for up to 2 hours, so it is possible. Also, if you ever need to just vent you can always pm me! 

  2. I agree this happens. It probably has something to do with the whole "autonomic dysfunction" thing as breathing is an autonomic function. In fact, when I first started getting symptoms I often learned that I was holding my breath. I would do conscious breathing for a few minutes and then it would go away. I think it's interesting though that this was happening to people before they were diagnosed it sounds like or their symptoms exacerbated...huh...

  3. Hello Everyone,

    It has been very long since i have been on this site. But for those of you who do not know me, i was diagnosed with POTS in 2010. I spent the next 2 years in what i call **** and slowly worked my way out of it. I remember where i was then and how much hope it gave me to hear positive stories. I wanted everyone to know i am doing very well. Although, i am unable to jog or do strenuous exercise (next on the goal list) i am able to walk as far as i please without a fast heart rate or lightheadedness. Also, i have been working 40 hrs a week for almost 3 months now with very little symptom exacerbation. I also was able to stop my ssri and found that helped tremendously with fatigue. However, there isnt a doubt in my mind that i desperately needed it when it was originally prescribed. Now, i just take florinef and have been on that regimen going on 6 months. I cannot tell you why i am better now than i was. And it is very possible that it's a fluke, or a misnomer of why i am able to do what i do. However, i can tell you i would not be where i am today, i am certain of it without doing the following things: 1. Staying calm (easier said than done but this takes practice and for me, it was able to be achieved through patience and persistence. 2.Overcoming neurotic behaviors about what is wrong with me. For me, this was constantly having to use a bp cuff and pulse ox. ultimately, it led to be freaking out every time a number changed and rushing to the ER 3. Acceptance of my condition and recognizing that medicine had taken me as far as it could. The rest was between me and god. 4. Physical exercise in a extremely slowly progressive and strictly persistent pattern. This meant for me at times pushing through symptoms and at other times stopping if they became too intense. 5. Learning what caused exacerbation, for me it was: stress, panicking, overactivity,the weather, garlic,and my menstual cycle. 6. Continuing to have a positive attitude and hope even in the darkest of times. 7. Recognizing that feelings of overstimulation might actually BE overstimulation--we live in a world that is much more stimulating now then probably our bodies were designed to be in: eating out all the time, constant exposure to commercials and music, the internet, phones, noise from TV etc.. For me, this means I can go to restaurants and fairs etc. without being overstimulated (which is something I could not always say) but that I don't always have to have the TV blaring, or music going, or constantly on the internet or texting. These things are detailed further in a post I made in the past.

    This plan will not work for all and many have underlying medical conditions that may be causing pots such as EDS, peripheral neuropathy, etc. And as a word of caution in the opposite direction, it is wise to be thorough--it is another thing to search for something that isn't there. In fact for me, reading some topics on this forum fueled my doubt that all i had was pots. It was always, what have they missed. Is it a brain tumor, is it neuropathy, is it eds, is it cancer? And even after being checked out for these things and being told i did not have them, I still did not believe them. But, the reality is for me, i don't have any of those things. And i am just as likely to get them as anyone else in the human population. This sense of worry for me, or quest for an answer prevented me from looking inside myself for answers and ultimately my path towards healing. And am I advocating to not get checked out? Absolutely not. We all know drs. are morons. Lol. But for me that quest was never ending and i had to put my foot down and say enough is enough. For me, that was when my healing began.

    It is my belief and solely my belief that the body will try its best to function in the standards of the environment to which it is exposed. For me, that environment was having a quality of life where i would not be in misery every day and i would be able to walk, and drive and work. When i was at the state where i couldn't walk ten feet to go to the bathroom, i would've slapped the person who told me that in the face. That is how much it frustrated me. Because i was like, well that would be nice, but i can't! After suffering for almost 2 years,i realized whatever i was doing wasn't working. So i tried something different and here i am today. And sometimes, even if the glass seems half empty, it can be half full. We all live in a time where there is therapy for our conditions and research currently happening to search for cures. That is not something someone could say with our condition 200 or even 50 years ago. And I think with any illness (or adversity of any sort for that matter), people have a choice. They may not be able to control the symptoms, but they can control how they react and adapt to them.

  4. Unfortunately, I think the florinef actually made my Shortness of breath worse. My BP has gone up around 20 points consistently. During my pots episodes it would drop down to 80/40 with a heart rate of about 160. Now i hang out around 110/65-80 which is normal for me. Florinef changed my life because it allowed me to change my life. It wasn't necessarily a miracle drug but it allowed me to get a hold of myself and the disease. Be sure they continue to test your potassium if you are beginning florinef because it depletes those levels. I tried food for a bit, which did not work (avocados, bananas, orange juice, potato (the skins), Revive Vitamin Water, and certain brands of black beans are high in potassium. I take the Klor Kon powder packets because i was not digesting the normal potassium pills(which is typical). Most doctor's probably just aren't aware because this is a newer disease.

  5. Hi Andy,

    Sorry to hear you aren't feeling well. I have been taking florinef for around 2 years now with good results. It has lowered my heartrate and presyncope. Make sure to get your potassium levels tested and eat lots of potassium rich foods as it can deplete these levels(which IS dangerous).

  6. Hello Everyone!

    It has been quite awhile since my last post so I am just checking in! I still stand by my theory that exercise is the best therapy for my pots besides medication (mine was fludrocortisone/florinef). Over the past year i have been on around 10 flights with no problems. And am now up to walking as far as i please--earlier last week this was around 10 miles up and down the strip in vegas. Then around 4 miles the next day in San Fransisco. I remember the day when i could hardly walk 6 feet to the bathroom! It is strange, i will admit that exercise helps--as i was in perfectly fine shape when I came down with this disorder. However, it seemed that my body needed to rest for a bit before it was ready to get moving again. Unfortuantely, Pots is still a part of my life in so far as periodic fatigue(which has gotten better with exercise), and lightheadedness. But i will trade those two any day for the nasty symptoms i was experiencing. It is hard for me to jog still above 2 miles or around 20 minutes of cardio. So i try to walk as much as possible to keep my stamina up. Exercising with pots is always an uphill battle. It never feels good. But over time, as my stamina has increased, my daily symptoms and endurance have improved. Here are some other things that helped me:

    1. Staying Calm- Easier said than done when your heart is beating through the roof and your adrenaline is firing off every 5 seconds. But really, staying calm and attempting to have control over my body helps. Not 100% but every little bit counts. Sometimes i think the panic caused by my pots created more symptoms. In this, i try to slow my mind down from racing. Slow down, calm down is what i tell myself.

    2. Taking Deep Breaths during lightheadedness periods--this seems to resolve it within a minute or two

    3. Knowing why I feel bad: Is a rainstorm coming in? Did i eat garlic? Have I had enough water today? Am i about to menstruate? Am i tired? are all questions i ask when i am not feeling well sure enough, almost always one is to blame.

    4. Getting enough rest- this means to me relaxing enough to let my body actually experience deep sleep. This can feel at times like i am dying or giving up but i'm not. I'm just sleeping and in the morning, man does it feel good!

    5. Trying not to pay attention to every little thing that happens in my body: ex: heart thumps--"what was that?!?! Oh my god i must be dying!"

    6. Stop fighting- for me going with the flow of my body has helped tremendously. If i do not fight to stay conscious--nothing happens except that i relax. And if i feel like i am going to lose it or something i say ,"ok body, you need a break? Let's sleep" and then i take a nap.

    7. Gradual exercise progression--slowly but surely--my results did not happen as quickly as i had expected

    8, Drinking Milk--i do not know why but it calms me down

    Anyways, I hope this helps those of you out there who are going through the rough patches. For me, there was a light at the end of the tunnel, but i had to find it on my own.

  7. I think the problem with people viewing me as being helped per se is a matter of perspective. In my opinion, in the end all it comes to functionality and what a person is capable of doing. My experience with pots is that the moment i give up hope is the moment that i lose the battle. I work, drive, travel (in airplanes too!), exercise, drink alcohol, eat what i want, go out in noisy places, walk anywhere i please with my friends, and mostly do what i want. To me, that is a success story. 2 years ago, i could hardly walk to the bathroom. Driving?! way too much of a liability. Exercise hahaha yeah right. Alcohol--only if i want to wake up in the morning with massive tachycardia. Eating--no carbs, no sugar. Noisy places brought on massive panic. Walk where i want--i think the bathroom is the least extent of that (and i was happy to have that at the time). I have pots and i can live my life..and to me that is a success.

  8. Pulling out my calculator...not so good at math so please correct me if i am wrong... out of 123 forum members:

    83% experience lightheadedness

    80% experience brain fog

    56% experience muscle spasms

    60% experience chest pain

    55% experience chest tightness

    85% experience fatigue

    41% experience electric shock like sensations

    52% experience sudden awakening in the night

    41% experience excessive sweating

    28% experience full syncope

    74% experience presyncope

    63%  light sensitivity

    63% sensitivity to sound

    76% weakness

    76% palpitations

    59% feelings of panic

    49% feelings like you are going to die

    62% feelings like there is something else wrong undiscovered

    80% dizziness

    67% Shortness of breath

    77% cold hands and feet

    72% tingling or numbness in arms or legs

    72% Headaches

    60% trembling

    64% visual changes

    38% perceptive changes

    39% sensation changes

    36% swelling of the hands or feet

    68% Heart rates over 130 beats per minute

    73% forgetfullness

    72% waxing and waning symptoms

    48% symptoms worsening during or before menstruation

    69% symptoms worsening with heat

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