Health update, for the curious:
I saw my neurologist August 10th, and he sent me to get an MRI on the 23rd, the results of which will be discussed on September 6th. On the August 10th appointment, he went ahead and gave me two medicines: Topamax, which I was supposed to take everyday, and Maxalt, which I am only to take when I have a migraine episode.
I took three doses of the Topamax – one half pill each night – before I decided to quit taking it because of the side effects I was experiencing (restless legs, insomnia, increased anxiety, brain fog, dry mouth, and general malaise), so I stopped taking it on the 13th. The side effects went away in about a week.
On the 24th, we got a call regarding the MRI: they found a complex cyst in my posterior nasopharynx, known as a Tornwaldt’s cyst, and they set up an appointment with an ENT surgeon on the 29th. We thought this could possibly be contributing to the symptoms I’ve been experiencing.
Last Friday – the 25th – I was petsitting at a neighbors, and I did not feel good. I felt a migraine coming on the night before, and it was in full swing by the time I was petsitting. I noticed I had some slight trouble using my left hand, especially when I was reaching for something. Didn’t think too much of it, and when I got home from petsitting, I went straight to sleep. I woke with the migraine not gone, and an hour after waking up, there was this weird… jerk in my arm. It felt like I had restless legs in my arm and I had to move it. These were pronounced jerks – not painful, but very noticeable. I took a muscle relaxer, but they persisted and did not stop for hours. I was still having small jerks when I went to sleep that night.
An hour or so after waking up the next day, they started up again. A bit more pronounced, and they wouldn’t stop. Still not painful though. My mom and I are getting worried, but we can’t call the neurologist because it’s Saturday. My migraine is still there, so I decide to take a Maxalt. An hour or so after taking the Maxalt, the jerks stop.
The next day, the jerks come back after I wake up, again after about an hour. This time they aren’t really jerks. They’re like convulsions – very intense and much more violent. The muscles in my arm hurt. I take a Maxalt, they go away again after an hour. The next the jerks are back again, even worse this time though now there is a break between them. I’ll have convulsions for about 30-45 seconds and then have a 10 second break. It hurts a lot this time. Yet again I take a Maxalt, and the jerks go away.
Maxalt, as it turns out, doesn’t just treat migraines – it can also treat epilepsy. After my mother and I do some research, we both independently came to the conclusion that the jerks/convulsions are some type of seizure limited just to my left arm (I think it would be called a simple partial seizure or focal awareness seizure, as I am fully aware during the episodes). Since Monday, my mom has been calling the neurologists office a couple times a day, trying to figure out what it going on. We think it’s caused by the Topamax, even though it’s been out of my system for about two weeks. The neurologist doesn’t call us back, they lie to us about having called us back, and it becomes this whole big mess until finally on Wednesday (the 30th) my mother gets very firm with them. They tell us they’ll give me an EEG on my September 6th appointment.
They haven’t told us what could be causing these episodes, haven’t told us whether I should I continue taking the Maxalt for these episodes, haven’t told us what these episodes could be, and they didn’t even tell us what I should do to prepare for the EEG. I am, quite honestly, very pissed about all of this. Not only has it taken forever to finally see the neurologist and for all subsequent appointments, he can’t be bothered to call us back and his office can’t be bothered to talk to us either. They lied to us about calling us back and then tried to gaslight us about it. At my August 10th appointment, by the way, I saw the actual neurologist for maybe three minutes. When I tried to talk to him about my concerns, he interrupted and talked over me and basically refused to listen to me. My mom and I asked him about the side effects of the Topamax, and he didn’t tell us ANYTHING. He said it might cause some tingling in the toes and fingers and to eat a banana for it. And when his office called about my MRI, they only mentioned the cyst and the appointment with the ENT surgeon. I had to find out from my ENT that they didn’t find anything else on the MRI.
I’m just super pissed about it all, especially because I just know that they’re not going to find anything on the EEG and the next test will probably be a spinal tap and it’ll probably take forever to get it done and then even longer to hear about the results. It’s taking forever to get ANYTHING done with this doctor, and every week my vision gets worse – which I’m not even sure if he knows it’s my vision I’m worried about because all he seemed to have heard is that I sometimes get migraines. Maybe if he listened to me, he’d realize that I’m going BLIND and that the migraines are just a minor little detail, that this is kind of time sensitive. Maybe he wouldn’t have given me medicine that apparently has given me seizures.
Sorry for the wall of text, guys. I just needed to vent, and part of me is hoping that one of you guys has some advice or knows anything about neurology. Have any of you seen a neurologist? Are long waits just par for the course?
- My health is getting worse.
- I have no idea when it will be taken care of, if it ever will be.
- My doctor is a jerk.
- My doctor might also have given me seizures.