Jump to content

Introduction and advice appreciated 😀


Recommended Posts

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 😁

Link to post
Share on other sites

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.

Link to post
Share on other sites

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 

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...