Can anyone make sense of my symptoms?

[dylanreich]

Hi everyone, I'm new to this forum, but I'm very excited to have found it. I was hoping that some sense might be able to be made from my symptoms...

Starting off: I am a 16 year old high school senior. During 4th-6th grade, I was diagnosed with, as I recall, "primary generalized epilepsy," with I believe "absent seizures." Along with that was constant head and ear pain. I was put on medication (I cannot remember the name, but it was effective), and I was weened off of it and essentially "grew out" of my symptoms.
Complicating all of what happened, I have a cyst in my brain that was believed by one of two doctors that I saw to be causing problems, but it became a non-issue after my EEG and resulting medication that worked and I was eventually weened off of.

Fast-forward to two weeks ago: My head and ear pains are back, but now worse. I can assuredly say there are the exact same as when I was younger, and the "absent seizures" are back. However, since two weeks ago, these symptoms (and *new* symptoms have gotten progressively worse, causing me to come here.

Everything here-on-out is new: Within the past week, there have been three (2 were two nights ago, very close in time) instances where my vision has gone black for a second. In addition, I have had lots of body movements out of my control. The worst was two nights ago while at my desk and my right arm resting on my desk, it jerked all the way up and to the left to about my chest area. Along with that, there have been many occurrences of all of my limbs to seemingly all slightly left out of my control. This happens more often with one or both of my legs, where they will sort of move a direction and be out of my control. The WORST (although nothing like what some of you guys have experienced, I'm sure) is a couple occurrences when I've been trying to go to sleep where I lose whole control of my body and I sort of feel a shiver go up from my feet to my chest/head and I have to wait to be able to "snap myself out of it."

Most of the last paragraph comes after the MRI (which the technician says shows my cyst didn't change in size all of these years, possibly erasing the idea that cyst growth has caused these new things, but he's just a technician, so we'll see) I had a few weeks ago. I have a scheduled appointment with my old neurologist at UCLA on December 22nd, but I came here because everything has gotten a lot worse since my old and new symptoms have come.

Can anyone make any sense of all of this? Thank you to anyone who might be able to help me, I really appreciate it.

 

[Nakamova]

Hi dylanreich, welcome to CWE!

The newer seizures are called myoclonic seizures (basically muscle jerks). As to why you are having them now, along with the other symptoms, it's tough to say. It could be related to changes or fluctuations in your metabolism and/or hormones -- as a teenager those things tend to be more erratic. If your cyst has shifted or caused any scarring or fluid build-up, that could also play a role. Do you know where the cyst was located?

Are you otherwise healthy and medication-free? Are there any other factors that seem to play a triggering role in your symptoms (like fatigue)?

Best,
Nakamova

 

[momof3boys]

Im sorry youre going through all of this. The black outs and jerking body movements I can relate to. I have temporal lobe epilepsy, and when I had my VEEG in march, after being completely taken off all medications, I started having simple partial seizures. I was consious through out them, but had the jerking movements on my left side, and the stiffening of my body. I would get this funny feeling before the seizure took place, followed my a sad feeling, and my left hand and foot would get tingly feeling, which would spread up my whole body. My head would turn to the right, thats when my body would stiffen and the jerking began. On day 2 of having seizures, they got so intense that I started to black out during them. I recall coming to, and seeing a nurse give me medication into my IV. From the sounds of it, you could be having seizures that are not being controlled. Do you have a neurologist you can contact now to give them these details? I wouldnt think you would want to wait til the 22nd and have these get worse.

Hang in there and let us know how things go!

 

[dylanreich]

Hi dylanreich, welcome to CWE!

The newer seizures are called myoclonic seizures (basically muscle jerks). As to why you are having them now, along with the other symptoms, it's tough to say. It could be related to changes or fluctuations in your metabolism and/or hormones -- as a teenager those things tend to be more erratic. If your cyst has shifted or caused any scarring or fluid build-up, that could also play a role. Do you know where the cyst was located?

Are you otherwise healthy and medication-free? Are there any other factors that seem to play a triggering role in your symptoms (like fatigue)?

Best,
Nakamova

Thanks for being here!

I'm not quite sure where my cyst is located, and I'm afraid I don't know what to make of my old CT scan from when I was younger or my newer MRI pictures, as I haven't seen my neurologist yet (but hopefully the MRI technician was right when he said nothing had changed).

I am otherwise healthy and medication-free. I have noticed that these symptoms do seem to be a little worse and occurring more often when I have less sleep, but they still happen in general (just a little less often).

Thank you for describing what I'm experiencing! It definitely feels a lot better to be able to have a sense of what's going on with you.

I did forget to mention that while these things are happening, I have sort of a painless sensation, but a strong sensation, in my head. It's sort of like things freeze for a second and then everything's back to normal. There's also been one occasion where all of this (with muscle jerks) happened when I was standing up and I became very dizzy for a few seconds and had to sit down to regain my composure. I should probably keep a list of everything that's happened so I can hand it to my neurologist.

Im sorry youre going through all of this. The black outs and jerking body movements I can relate to. I have temporal lobe epilepsy, and when I had my VEEG in march, after being completely taken off all medications, I started having simple partial seizures. I was consious through out them, but had the jerking movements on my left side, and the stiffening of my body. I would get this funny feeling before the seizure took place, followed my a sad feeling, and my left hand and foot would get tingly feeling, which would spread up my whole body. My head would turn to the right, thats when my body would stiffen and the jerking began. On day 2 of having seizures, they got so intense that I started to black out during them. I recall coming to, and seeing a nurse give me medication into my IV. From the sounds of it, you could be having seizures that are not being controlled. Do you have a neurologist you can contact now to give them these details? I wouldnt think you would want to wait til the 22nd and have these get worse.

Hang in there and let us know how things go!

I'm sorry to hear that ): I'll have to look into contacting my neurologist sooner. I think it' taking a long time to get back in because it's been 5 or so years since this has been an issue, so I had to go through the whole process of seing my doctor and going back through the system, plus my neurologist is at UCLA, which I guess is a very busy medical center I'll probably just stay put unless things get a lot worse, because I can function throughout the day.

 

[Nakamova]

I should probably keep a list of everything that's happened so I can hand it to my neurologist.

Definitely! Give him as much detail as possible about your symptoms.

The dizziness can be wholly seizure-related, but it could also come from issues related to blood pressure/circulation or blood sugar that may be playing a role. You might find it helpful to keep a seizure journal. By noting not only the seizures but other factors such as time of day, when and what you eat/drink, kinds of foods consumed, sleep patterns, unusual activities or stresses, etc. you might be able to pick out other things that are lowering your seizure threshold. For example, some folks are triggered by food additives like MSG or aspartame. Others find that low blood sugar or gluten or flashing lights can set them off.

 

[dylanreich]

Definitely! Give him as much detail as possible about your symptoms.

The dizziness can be wholly seizure-related, but it could also come from issues related to blood pressure/circulation or blood sugar that may be playing a role. You might find it helpful to keep a seizure journal. By noting not only the seizures but other factors such as time of day, when and what you eat/drink, kinds of foods consumed, sleep patterns, unusual activities or stresses, etc. you might be able to pick out other things that are lowering your seizure threshold. For example, some folks are triggered by food additives like MSG or aspartame. Others find that low blood sugar or gluten or flashing lights can set them off.

Thank you, your suggestions will be very helpful!