Hershey Posted November 7, 2017 Report Share Posted November 7, 2017 Hi everyone. I was diagnosed with POTS in January of 2012. I am a teacher. I am new to this forum, but I feel blessed that I have found it. I'm a complicated mess @ this point. Lol. The beginning was horrible, bewildering, and I felt insane. The symptoms started a year earlier and I was hospitalized, but they couldn't figure out what was wrong with me. Best follow-up diagnosis given by a cardiologist ever, "It will happen again, but we don't know what's causing you to pass out." Awesome. I then found a neurologist in a larger city who based on symptoms said he thought I had POTS. What is POTS. Research began on my end and I was devastated. Kept passing out everywhere. Had to have someone around when I showered, etc. Eventually, positive tilt table a few weeks later. Bp meds-propranolol. Been on midodrine, salt tabs, Gatorade, fluorinef. Felt so sick. Caused me to throw up daily. FMLA became part of my language started to get quite a bit better after a few years, doing a lot more, just taking propranolol. Now, I am back at square 1 and sooo confused. Went to ER which was a joke. My heart rate was averaging 58-63 bpm. No bp issues. No energy, passing out, tremors, and weak. Needless to say neurologist is saying nothing besides take a salt pill. Ok. Doing that. Took a slightly lower dose of bp med last night and woke up with 100+ hr. So frustrated. Read mri dictation. Here's what I know. I have a pineal cyst, atrophy of mamillarry bodies and hippocampus and POTS. Neurologist has only discussed the cyst with me. Any of this sound familiar to anyone? Anyone relapsed this badly? Anyone abnormal MRI? I appreciate anything. Thank you so much 😁 Quote Link to comment Share on other sites More sharing options...
vepa Posted November 7, 2017 Report Share Posted November 7, 2017 Have you considered/talked to your doctor about a pacemaker? I know that for some it's an option, especially when the meds/salt/water aren't stabilizing you enough. Quote Link to comment Share on other sites More sharing options...
Lily Posted November 7, 2017 Report Share Posted November 7, 2017 I was feeling so poorly in September and early October that I was worried about being able to keep working. Then I drank a liter of Pedialyte on impulse, and I felt halfway better in minutes. So for me an electorlyte solution for sick people works better than simply salt and water separately throughout the day. I mix up an electrolyte cocktail and drink 1 - 2 quarts daily as part of my salt and water intake. I feel better than I have all year even when working all day, and my orthostatic tolerance has increased. Juice to equal about 80 grams of carbs (how much depends on the juice, and you can use Gatorade, too). 1 teaspoon regular table salt. 2 teaspoons low-sodium salt. Enough water to make the total volume 1 gallon. This has about the same electrolyte and sugar content as Pedialyte. Quote Link to comment Share on other sites More sharing options...
Hershey Posted November 7, 2017 Author Report Share Posted November 7, 2017 Thank you Lily. Vepa, this just started with the low heart rate so not sure about that going to see a doctor in Miami next week. Anyone have strange things on MRI? Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted November 7, 2017 Report Share Posted November 7, 2017 I have an abnormal MRI, but no cyst. That type of cyst often goes with a Arnold Chiari 1, but doesn't have to. Might be a good question for a neurologist. I've read that type of cyst typically does not cause problems by itself. I know it is hard not to freak out when you hear something like that, though. My MRI showed brainstem compression. Another one showed a Chiari. Right now I'm just trying to find two doctors who agree. Please keep us updated. I think there are several other people on this site that have pineal cysts and know much more about it than me. Also, you can use the search feature to pull up old posts about them. Take care. Kim Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.