Newbie here: Can't believe I didn't know!

[Kristina]

 Hi all,

So so so happy I found this forum. I have not been formally diagnosed yet, but I suspect that I have had POTS for most, if not all, of my life. This whole time, I thought the symptoms that I was experiencing were normal and that everyone else also experienced them. It wasn't until I randomly saw a link to a petition for POTS awareness that I decided to click on and read that made me realize that I could identify with almost every symptom listed on that page. I asked my fiance if he ever felt these symptoms, and he said no. 

Long story short, I ended up buying a blood pressure cuff and we did the stand test. After minute 6 of me standing I felt like I was going to either going to faint or throw up. The last reading had my heart rate at 135, it had jumped over 35 points from lying down for 10 minutes (averaging around 90-100ish) to 135. At that point we had to stop. I have the test results written down and planning on bringing them to my doctors appointment at the end of the month.  I am hoping to get a referral to see a cardiologist after seeing my primary care doctor. 

For those of you who want a longer version, feel free to read on as I describe all of these symptoms and things that happened in my life that I thought were normal *haha*. This all became subconscious to me and a part of my daily routine. For reference, I am a 25 year old female, in the normal BMI range, and I'm pretty sure I've had this my whole life. I have previously been diagnosed with ITP, but it has been in remission since a lot of IVIG and prednisone a few years ago.

-Pretty much every time I go from sitting down or lying down to standing up, I get dizzy to the point where it's hard to concentrate on what's going on around me, my heart is pounding, my vision starts to get blurry or I get tunnel vision. and I get the chills. Sometimes it's so bad that I have to pause to collect myself before getting back to what I was doing. Sometimes it feels like I have to go sit back down immediately or I'll faint.

-I have blacked out in the shower many many times. It's hard because I like long, hot showers, which I have now read are not the best for people with POTS, so now I don't shower with the water as hot and I've noticed a big reduction in the severity of my shower symptoms to the point where I don't notice them now. I had previously fallen in the shower from blacking out as a teenager however I never had health insurance so my parents just thought it was anemia. (I don't have anemia)

-Straightening my hair is becoming a huge issue for me. I straighten my hair standing up. I have really long curly/wavy hair that goes down to below waist level, so it takes me a while. I frequently have to go take breaks and sit down while I'm doing my hair because my heart is pounding, my head is pounding, and my vision starts to get blurry and I don't want to end up burning myself because I can't concentrate. This last time I straightened my hair I pushed myself to fight through some of the symptoms and kept standing to see what would happen and I got so violently nauseous and ended up throwing up for a few minutes. I felt fine after I sat down.

-My symptoms are alright if I am standing but slightly moving around and shifting my weight around. A few weeks ago, I had to give a presentation for work in front of 60 people, and I got up from my chair and stood up at the front of the room. I tried to stand still and do this professional presentation, but I had to move around and at least shift my weight on my feet while I was doing this. Otherwise, I felt my heart racing, my head pounding, I had the chills, and I felt myself becoming nauseous. I felt fine once I sat down after the presentation.

-I can't really run or exercise aside from rowing or biking. I try to run and while it feels like I run for a lot longer, I can only run for less than one minute spurts before my heart feels like it's going to point through my chest, I get a headache, and feel nauseous. As a teenager, I took my school physical education/gym classes during the summers so that I would not have to run the mile because I couldn't stand how awful it made me feel. Rowing and biking I can do for over 20 minutes straight. I'm fine with swimming too, but anything that involves running around, I just feel so inadequate like I can't do it. 

-I am so very easily cold or warm. I frequently joke with people that my ideal temperature is ideally between like 70 - 80 degrees Fahrenheit otherwise I am either freezing or sweating. I have to have a heater at work because the the air conditioning always makes it within the 60 degree range, and that is too cold for me to even concentrate. At work, when I go from sitting to standing, I experience the same symptoms, and I am scared that I will end up blacking out or fainting at work. When I'm walking at work and there's a quick change in temperature (walking outside from inside, walking to different areas, etc...), I immediately get the chills and start sweating. I also experience a lot of IBS-like symptoms in the cold especially when my hands or feet are cold... and those are the first parts of your body that get cold. The worst part of my work symptoms happens during lunch time when I'm heating up my food at the microwave. Standing up next to the microwave for those few minutes waiting for a frozen meal to heat up is seriously the worst. I end up with a headache, not being able to concentrate on any conversation that's going on around me, I get the chills, I start to sweat, my heart is pounding, and I feel like I'm going to faint. 

-I used to be in choir from the 2nd grade through the 8th grade as a kid. I would experience so many symptoms when we would be standing up to sing and perform. I always had to shift around on my legs and fidget to keep from feeling faint and lightheaded. My heart would usually be pounding while we were standing up. There were times I had to sit down because I had tunnel vision, blurry vision, or it was like my vision was black and white. My choir teacher always emphasized not locking your knees, so I always made sure my knees weren't locked, but I guess because I was upright I still experienced symptoms. Another time, I remember walking from a different building to an outside area to my main elementary school building in a line with my classmates and my vision started to go again, my heart was pounding, and it was like I was experiencing time in slow motion, and I had to stop and crouch against a wall briefly, but I was so happy when it all went back to normal because as a child, that was scary.

-My symptoms are worse in the mornings. For a long time, I thought I had IBS because a lot of my other symptoms seemed to match with that, except that everything is worse in the morning. This year, things have been getting a lot worse in the mornings. I usually feel nauseous right when I get up from lying down to standing and walking around and this has sometimes led to me throwing up. I also regularly have morning diarrhea (almost a daily basis) and a whole lot of stomach pain. 

Just posting this because I don't have anywhere else to and I never thought that any of this stuff was not normal because the symptoms I've been experiencing have been ones that I think I've had my whole life, so I just assumed this was normal. I'm seeing my doctor at the end of the month and plan on sharing all of this with her and go from there. I look forward to getting to know you all and your stories in the meantime!

[BuffRockChick]

Hahaha!  I know, right?!  I have preliminary diagnosis, awaiting tilt table test for official confirmation.  How did I not know?  It's been 13 years!  I especially identify with hair straightening!  I can't manage styling my hair.  I have to have it pixie-short or ponytail-long!

Pumping gas, brushing teeth....  yup.  I had an amazing opportunity to teach classes, but after one I felt terrible.  I couldn't figure out why I struggled so much teaching these classes, everyone (including myself) assuming anxiety.  Nope.... just standing for 4 HOURS.  No freaking way.

Welcome to the club!  Please post often as you begin to learn how to minimize your symptoms.  (((Hug)))

 

[haugr]

Welcome to the forum Kristina

[Always hoping]

This forum is an amazing resource.  Welcome!

I got sick 8 years ago, diagnosed 3 years ago and just a few days ago made the connection that issues I had 30 years ago were POTS related!  Lol

I hope you can find many answers here and some great ideas that will help to manage your symptoms.

Be well.

[StayAtHomeMom]

I was officially diagnosed this past January. It is amazing when you think back how long you may have had it and had no idea. I had to have my PCP explain what palpitations where. I assumed it was when your heart skipped a beat only (doesn't happen often but moreso lately). I was surprised when she explained it because I thought everyone felt it as often as I did. I am still trying to get a specific answer to a cause so I can begin to feel better. I refuse to be a guinea pig anymore and won't take meds unless they can prove I have what they think I do. Good luck and welcome to this forum. So much information and support on here.

[Kristina]

Thanks for the warm welcome and support everyone! My appointment with my primary care physician is in less than a week, so I'm anxious yet excited to see what will happen. 

[Kristina]

Hey all, I just wanted to let you all know while I have not been formally diagnosed yet, my doctor did start treating me and prescribed me propranolol to help with symptom management. She is consulting with a cardiologist for a further course of treatment for me, as she does not want me to get shuffled between doctors as of yet.

 

The medication has taken away a lot of my symptoms. I don't feel dizzy or lightheaded when I stand up anymore and I can't feel my heart pounding anymore. I think it is working. Everything feels so different. I honestly feel like a new person going about my day to day actions. As I think I've had POTS my whole life, or at least as far back as I remember, this is an adjustment, but I'm so happy that I've found something that helps!

[StayAtHomeMom]

So glad things are going well for you. It sounds like you found a wonder pcp.

[vtpixie]

Has anyone else gotten dizzy spells also from just walking, while sitting or while lying down in bed? I feel like most people seem to get the usual when getting up from a seated or lying down position. I have also had POTS for most of my life and CFS for 20 years. I also have gotten motion sick since I was a toddler and that seems to have gotten significantly worse in the past 5 years. Just turning my head a bit to quickly or looking up or down a bit to quick can trigger it. I wish there was a solid treatment at this point. Most doctors I come across have little experience with CFS and no experience with POTS.

[BuffRockChick]

@vtpixie, I had dizziness and presyncope while sitting and walking when I was on a medication which makes POTS worse.  I had no idea what what's wrong at the time.  I had a misdiagnosis and was years away from learning about POTS.  (((Hugs)))

[StayAtHomeMom]

I can get different types of dizzies. Lately I have been getting them when I am laying down and it only last a few minutes. I have all types over these past 2 years. If I walk, talk, and smoke I will get lightheaded. If my symptoms are being horrid just talking in any position will make me lightheaded. When I did my 6 minute walk a year ago I about passed out from being so dizzy. I have learned to adjust and suffer through it. If my dizzies or lightheadedness is bad I won't drive but usually I just suffer through or take 1/2 a dramamine to help it. My dizzies can be noise induced as well. Usually when I get away from the noise it will pass. My last bad dizzy spell was over a year ago. I was doing my stint for jury and I got grand jury. I had been sitting there and all of a sudden my head started spinning. It lasted about 4 or 5 days.