Spasm Horrors

After being diagnosed as AQP4+ and getting paralyzed from the waist down, my initial phase of spasms started without any pain. My muscles would get very stiff and my leg would twist. But then gradually the spasms started to get worse.

I have mentioned very briefly how bad things got with spasms in my article “Pins and Needles”, but here are the details.

Muscles awakening

When sensations started coming back in my feet, the initial wave was like someone was throwing acid on my feet. Another time it felt like hot boiling water. My blood pressure used to shoot up like crazy when this would happen, and I would become all sweaty.

My physiotherapist insisted on going with the flow as it was a simple muscle awakening. But when the pain got out of control I was rushed to emergency in the middle of the night.

Treating my pain

Fun fact: Doctors had to search online about NMOSD first, then soon realized they had no clue what they were dealing with. My neurologist was not reachable at the time, so I was told to wait until morning and I was left at the mercy of resident doctors.

For the night I was first given a normal painkiller. When that did not work, they put fentanyl in my IV, which is the strongest painkiller. The effects lasted for about two hours. Again, I started screaming so they decided to give me Ativan, after which I dosed off.

Worsening again

In the morning when my doctor came, he decided to inject baclofen into my spine for the next two days.

I was discharged 5 days later. The effect of baclofen stayed for about a week. The spasms were still there, but they were less painful now.

But then as the medicine started to wither off, the pain, jerks, and spasms started to hit me with a lot worse intensity. It was to the point I was hysterical. Also, this was when my paresthesia (pins and needles) began to set in.

I remember this one time it got so bad that my mom had to hold my leg and my daughter hugged me tight so that I didn’t end up hurting myself.

A new prescription

I was taken back to the ER again. This time I was given the same line of treatment, but when I was discharged I was prescribed Serenace 1.5. They said it would help with spasms. It did, but by putting me to sleep all the time.

When this continued for about 20 days, my mom became doubtful and consulted my uncle who is a surgeon. To her horror, she was told it was used on patients who have schizophrenia, and I was asked to stop taking it immediately.

A guinea pig

My ankles and toes continued to twist like a scene straight out of a horror movie. This led to swelling of my legs. My excruciating spasms continued, and so did my visits to the ER every 10 days. I had become a proper guinea pig in the hands of doctors - I was given all kinds of medicine that would treat epilepsy, MS, muscle atrophy, and schizophrenia.

Starting a trigger journal

I was at a point where I felt gaslit by doctors and formed serious trust issues. And this was the same time I found this community. I started exploring an article written on spasms. It mentioned tracking patterns and things that could affect spasms. I decided to maintain a journal. When was the peak time of heat waves, the spasms, and what seemed to trigger it the most?

Through this journal, I soon realized when the weather changed and 10 days before my period the heat waves would be at their peak.

And it was the same thing with certain foods triggering spasms. Indian flatbread is my favorite, I can survive my whole life eating flatbread stuffed with potato or any veggie and rice in any form.

So two foods that I loved became the biggest culprit in triggering my nasty spasms. I decided to leave them immediately, and started experimenting with another form of grain, not knowing if that would work.

Shift in frequency

I was surprised to see a massive shift in the frequency of spasms that happened. In the first month, they lessened from every minute to four days. In the following month, it further reduced to every 10-12 days. And then I reached a point where I was no longer experiencing spasms.

I often ask myself, why couldn’t my doctor suggest that food might play a factor in what my body was experiencing?

I am a true foodie by heart and I have left my favourite food. This was an emotional setback for awhile, but it's all good now. And besides it's better than going through the spasms ordeal. When I look back at those days or videos that I had made for reference, I think how did I even survive that?