Lemons2lemonade

I also check my pulse often as a nervousness thing. I don't know what i really expect to find as its been pretty consistent for the last 6 years with little to no tachycardia. But i notice that sometimes it beats harder and sometimes it beats weaker.

I took citalopram/celexa and it was a godsend for sleep. I literally felt everything just calm down. It actually kind of scared me at first, but after awhile the relaxation of it was an incredible relief. Before that i was hardly able to sleep at all .

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!

Some good info on this: http://articles.mercola.com/sites/articles/archive/2014/10/21/gardasil-hpv-vaccine-adverse-reactions.aspx http://drblitshteyn.com/articles/Gardasil_and_POTS.pdf

I am bumping this to go along with my update post for new members So glad to hear it helps others!!

When the cabin pressure drops once the door is closed I get very lightheaded. I know it drops my blood pressure. So, I just take a nap and wake up when I arrive at the destination.

If I take prednisone, which is slightly similar with more glucocorticoid properties, it drastically increases my HR...

I did poorly with midodrine, and midodrine/florinef combo. I lasted 2 weeks on midodrine, withdrew from it and a beta blocker in the hospital and switched just to florinef.

I think so! It has helped me a ton. But I don't do meditation like the typical way of maybe the crossed leg pose. I just do it within my brain calmly, saying ok, be calm.

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...

I have been out of the loop for awhile. Last I heard Dr. Raj was saying pots is caused by autoantibodies. Just saw that he is in Canada now. What's up with that? What are the new ideas going on with research?

Addie, Random question. Did you faint in WA? I actually saw someone unconscious at a stop light. Went and parked my car to run out and help them, but by the time I got there, they were gone!

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.

The talking thing has happened to me before too.

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.

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).

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.

Have been reading up on this. It is caused by contraction of smooth muscle (the same ones in our veins that "aren't working") that lead to low BP. Wondering if our bodies are overshooting smooth muscle contraction to try to compensate for low bp. Therefore constricting our bronchioles (which don't need it) causing us to feel short of breath. Beta Blockers can also make this worse.

https://en.wikipedia.org/wiki/Hydrogen_sulfide The hydrogen sulfide gas can be found in well water that is either contaminated with bacteria, in a volcanically active area, near pulp mills, tanneries, swamps/bogs and oil refineries. It is found in water typically by its sulfer like smell.

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.

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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Stress affects norepinephrine, epinephrine, and adrenal function. It absolutely has an impact on pots.

dr leonards is a great place to get cheap compression stockings...love them. I would say they improve my symptoms by about 10%. However, i only put them on when my symptoms are at their worst as i want to train my body to be functional.

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