19/03/2025
Well, pretty much every day after this post was a downhill slog.
 Slowly, we were losing the ability to walk. All of her energy was gone. She had severe bouts of cold with occasional bouts of hot. She would have a runny nose when laying down where she couldn’t breathe her numb and tingling legs returned with occasional itchiness between her toes, she was having blurred vision again, she was suffering from vertigo, nausea, and all forms of G.I. issues. She was using the restroom 12 to 15 times per day and 4 to 5 times per night. She was also barely speaking anymore.
After review of all the notes of what had been going on, there were three things to look at
1 withdraw from amitriptyline
2 she started injecting D3 the day before her symptoms really declined more
3 her memory has been declining since September so i suspended over drainage of her shunt.
We decided to go to the ER to get some scans and make sure nothing was wrong inside of her brain and to also see about getting her shut valve raised one setting. Also knew we would get proper bloodwork done there quickly so that we could evaluate the rest of her.
Extremely long day in the ER and some frustration, they finally changed her valve setting, and it seemed to have an immediate impact on her voice in possibly a little bit of her memory. Her nausea seemed better at first, but that was only temporary.
The following day after a meal and a car ride her nausea and fatigue came storming back, so I decided that it may very well still be a lot to do with withdrawal or D3 shot .
Eventually, I found out her calcium levels were fine from the bloodwork, so I felt comfortable continuing the D3 work and assumed the rest of her issues were related to the withdrawal of amitriptyline .
Continue to improve each day, so it seemed like we were starting to put this all behind us us until I gave her an additional dose of the D3 . Did not have the same impact. It certainly made her nauseous again and from what I understand if you are low on magnesium, it can also have this effect. So we got her a quick IV with lots of electrolytes and a bunch of magnesium and Zofran, and she did the rest of the day..
It seems like we are making progress back to our baseline and she’s getting better every day so all of this tough work seems to have brought us to the right result. Her memory is improving daily and sometimes with explosions of old memories in the middle of the night , her system seems to be overwhelmed with all the new sensations and that’s why she has vertigo, but that continues to improve, and she is slowly restoring to her prior ability. In fact her movements are more smooth and more controlled..
Obviously, I want to get her as stable as possible, and on the right track because we are going to Cabo in a few weeks for stem cell treatment and we have laid a lot of groundwork for those to do amazing things in her and I think now it will even be better that we have these blockades out of the way for her brain to continue to heal , especially in the areas that have been holding her back.
I’m really over the next few months as she continues to recover from all these changes with the hopes that they are worth it in the end because I think they are going to allow her to move much further in her recovery than she has been able to .
