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What Is P.O.T.S??
One of the diagnoses that I have is called Postural Orthostatic Tachycardia Syndrome otherwise known as P.O.T.S for short. This is a long word that basically means my body does not get enough blood flow going when I stand up and can result in my body doing a variety of different things. Your heart rate can increase within the second of standing up (normally this is a 30 rate increase or more) For example let’s say my heart rate normally runs in the 60’s when I am sitting down, well when I stand up my heart rate increases to 120-130 or even higher in a matter of seconds. Then the step that usually happens to me is my blood pressure will drop and I will become very disoriented and quite dizzy and need to sit back down almost immediately. There are times where I have so many different symptoms, I do not even know if they are from this disease I have or another one. Although with P.O.T.S, I get very light headed, nauseous, fatigued, an inability to exercise, fainting, blurred vision, etc.. The only time I am able to get through the increased rapid heart beats or any of my other symptoms, I have to lay back down flat. These are the times where I get completely stuck in bed because either I am too scared to stand up or have so many falls, standing up isn’t even an option for me. P.O.T.S can be a very debilitating syndrome, although not everyone has all these symptoms and some are able to grow out of it.. not all though. How can P.O.T.S become debilitating for people you ask?? Well, what it does is it affects the central nervous system in your body. Your autonomic nervous system is just not sending the signals like it should for your brain.. the way I see it, your brain just continues to misfire. I go into a zombie-like state, and I can’t speak, I have no clue where I am at and my eyes start to dilate where I cant see either.
Books on P.O.T.S
Accessories, wear and misc items for P.O.T.S
Additionally, how did I get diagnosed with this syndrome? That’s the next question I always get, and it was pretty hard for me to answer at first, for me my doctor believes I have had this way before I was diagnosed. Getting the diagnosis or a doctor to listen to me was a struggle, but I would like to tell you in the best way I can how I got the help I needed, so hopefully, you can get the help you need. First, I was told that a lot of people get misdiagnosed with this syndrome because tests are not done the specific way they are supposed too. The testing began for me when I had a physical therapist measuring my blood pressure, she saw that it was very low, they would change directions and vice versa with positional changes. She told me that she “thinks there is something wrong with my heart, that I probably should get in to see a cardiologist soon.” This, however, came as a huge shock to me, I was there for having 9+ concussions, so I had no idea that it could be anything at all with my heart. With all this being said and to make a long story a lot shorter I went to the cardiologist, he performed an EKG, my blood pressures, from sitting to standing to laying down to see the changes, a 72-hour heart monitor test, and a tilt table test.
Now a tilt table test is one I really don’t like to talk about and had it done twice because the first time it was actually done wrong. A tilt table test is a test that is used to diagnosis most of those who have P.O.T.S. What will happen is they will have you lay on a table (i seriously felt like I was in a Frankenstein movie, so if you can picture something like that). Anyways, they have you lay down and you get strapped into this board, they then raise that table to a 60-75 degree angle. The doctor and nurse that is in the room with you, will monitor your blood pressure and heart rate the entire time during the test. They will also ask you “how are you feeling, do you have any symptoms?” For myself, I can remember nearly blacking out, I wanted to barf and think I actually may have.. I also felt my heart race so fast I thought it was going to completely come out of my chest! I was dizzy, light headed and well, to put it bluntly, felt like absolute crap! I despise this test, and I will never let them do it to me again, it was no fun that’s for sure. So for a person with P.O.T.S during this test, you are diagnosed after you have a heart rate increase of at least 30 bpm or more, this is done after the head of the bed is tilted and raised.
Concluding, having P.O.T.S can be very frustrating and very hard to deal with. There is no cure (so bringing awareness to others is a dire need), and there are hardly any treatment options. Some of the treatment options that I know off and have used myself include;
- Medications; your doctor may try several different medications until they find a regimen that works best for you.
- Compression Socks
- increasing salt intake: Now this is a must, salt really helps. Increasing to 6,000mg+ is one of your best options for treatment with this syndrome.
- Increasing your fluid consumption: This is also something you will want to make sure to do, it is easy to get dehydrated so drink as much water as you can. I drink 120 oz a day myself.
- I also increase the head of my bed because it helps my heart rates at times.
I hope all this information helps bring awareness and also helps those of you that are going through this diagnosis yourself. Know you are not alone!
Disclaimer: These pictures are hard for me to post, these are my bad days and what a bad day looks like for me. I did not want to share them, but I think by raising awareness to this cause is better than my insecurities.