I finally saw a new neurologist in my new city. He said I had very “brisk” hyper reflexivity. He thinks I have a few different issues including a issue that causes my muscles to get weaker as I use them (the name slips me). He said I may be having seizures causing the long, weird fainting episodes (not the same as the Pots passing out). My cardiologist thinks it could be arrhythmia amd Neuro thinks it could be seizures. He did some testing and has diagnose me for now with myoclonic seizures or muscle jerking and involuntary movements. He has put me on Zeppra (Levetiracetam) which is an anti-consultant or anti-seizure Med. He seems very thorough and we will be doing a ton of testing for brain wave, sleep study, nerve testing….. Along with my heart testing over the months.
Just a quick note that the notifications for your comments on this blog has been having errors lately and I cannot see, read or reply to most of the comments. Comments seem to be out of order on the WordPress app. Hopefully this gets fixed soon. Thanks for your comments. Keep up the good fight.
The heart doctor said that my two week monitor didn’t catch the passing out episodes of any arrhythmia. The issues happened before and after the monitor was on. So she suggests I get a heart monitor implant that goes under the chest skin for 3 years. She said my heart was very slow at night sleeping and very high during he say when awake. She said my heart skips beats but that is “normal”. The 50mg of Losartan is keeping my tachycardia down to the 130-140/100-90 range so my BP is much better than it has been since I was 13 years old. I was worried that long with tachycardia my heart would be a mess but so far it’s not as bad as assumed. Cardio said I have some “mild leaky valves”.
Next up is a nuclear stress test. Then a sonogram of the carotid arteries in my neck. And then I choose if I want the heart monitor “surgery” which looks very simple. I think I will do it since my episodes come and go. The episodes I’m talking about are the ones that are not POTS but the longer fainting episodes. With POTS I stand up and pass out, wake up on the floor and go sit back down. With the other episodes I start seeing tunnel vision, hear words backwards, can’t understand anyone, can’t move, I HAVE to lay down even if it’s a dirty bathroom floor and I eventually pass out for a while. The episodes last about 45 minutes. My skin turns paler white to gray, I’ve been told I look “dead” and one lady thought I had passed away calling 911. It’s happened about 5-6 times since last year. Cardio thinks it’s brain or heart related.
It’s good to keep testing and rule things out. The more I test the more illnesses I’m diagnosed with. Don’t let anyone tell you nothing is wrong if you know your body and know you are suffering.
Some Tips I’ve noticed over the years:
- IV Rocefin (ceftraxione) can cause your gallbladder issues and to have to be removed. Ask your doctor before you use it.
- Doxycycline and the sun don’t mix, I still have a scar on my forehead from being in the sun for a few minutes while on Doxy.
- Being too aggressive on antibiotics, using too many at once and high doses caused thrush, severe candida and c-diff. It took about 8 months to heal from all and I had to stop all antibiotics. I was on a ton of probiotics and took all precautions before started the aggressive treatment but it didn’t help. I had a flesh eating type of thing that was not only scary but very painful.
Added a few new diagnoses since I first started this blog. There are some illnesses I’m sure I’m forgetting on this photo and this doesn’t explain the hundreds of symptoms or acute issues I went to the hospital for or nearly died from like elderly pneumonia, aseptic meningitis…etc. I had mold issues but treated them and they are mild now.