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Well Im new to all this and I am so happy I stumbled across this forum. I have so many questions and uncertainties right now.
This all started in the beginning of Februrary... I had my first myoclonic ( correct me if I'm wrong) seizure and it scared the h*ll out of me. After 2 more I went to the family dr, since I had an idea I would need a referral. She said if it was to happen again go to the ER. It did, and so off we went.
There I was given a CT scan and bloodwork. CT was clear, blood work revealed my TSH level was at 55. I really feel they were more concerned with the thyroid issue than the seizure activity that I had been experiencing. I have since seen an endocrinologist and been diagnosed with Hashimotos, but thats a whole other story.
So after much aggravation in trying to get an appointment with a neurologist I finally was seen. (side note, can I just vent at how frustrating it is to get in to see a neurologist? By the time I had gotten in to see him I had 8 episodes! No meds just very scared times thinking what is happening to me!!! *rant over*)
We did an EEG and the nurse called to tell me I had absence seizures and gave me a prescription for Lamictal. I heard nothing else out of either of them and was left with many questions. At the time I was to upset to ask anything because she told me I couldn't drive for 6 months and that threw me for a loop!!!! I asked him point blank through their messaging system since they don't take calls, and he couldn't tell me about the main reason I went in, which was the jerking seizures. I promptly asked to see a specialist and so now Im waiting till late April to see him.
Now on to the good stuff:
Since I have not been fully diagnosed I will tell you what happens and you can fill me in. Im not sure I have epilepsy, or what to call all this. The internet has been helpful, but I see lots of experience here
When the "episode" happens I get a 1-5 second warning in my head, its like I have spidey sense like spiderman, but its not a pleasant feeling. I think this is called an aura.
My legs and sometimes my arm starts jerking up and down uncontrollably, like when the dr hits your knee and you have that automatic response.
Now my hand will be clenched or else i put them under my legs to keep them calm. I don't loose consciousness and I am able to hear, although I can open my eyes, usually they are closed. Lasts about 30-45 seconds maybe a bit longer, its hard to tell.
Now to the freaky things: Hubby was driving down the road, we were all talking and I suddenly lost my thoughts, I was staring at a building, but I couldn't understand what I was seeing. My vision was distorted a bit, and it was like "I'm looking at a building, but what is a building?" Its hard to explain, but that happened several times that weekend. That seemed like it lasted about a minute.
Next things that happened during the week I started Lamictal.
My head lost its control and fell back so that i was looking at the ceiling. I was doing dishes, and it surprised me. I didn't feel any fear, but after 7-8 seconds I was able to pick my head back up and continue. WHAT IN THE WORLD!!!!
Next, a day or so later I saw this amazing bright light shoot from the outer bottom corner of my eye to the inner corner. Almost so low it didn't seem in my line of sight. It has happened many times since then, mostly at night before I go to sleep. Now, you may say its just a light in the room, or the tv or whatever, but I wear a sleeping mask, so no light enters! Also have seen little specks of light like a glitter floating in the air. Convinced it was a bug or something I turn quickly a few times back and forth trying to catch another glimpse but to no avail. To anyone who witnesses this I seem like I am deranged. I asked the Neuro and he said to go see my eye dr. I did and they said my eyes were perfectly fine.
I have had another episode a few days ago, but it was not near as bad. I understand it can happen since I am currently still going up on my dosage. Not a big deal, but I want to get an MRI and really dig in and see if I can figure this all out! Daily I have muscle twitches all over my body, but mostly the limbs. They didn't start out hurting, but now I have some pain when they occur.
Im sorry for the novel here, I just feel like I can gain some insight to whats going on from you guys, and feel a little more sane. Its really hard to describe this to loved ones who just stare blankly and nod like you are loosing it. And waiting to see the DR is the HARDEST PART!!!
Thanks
This all started in the beginning of Februrary... I had my first myoclonic ( correct me if I'm wrong) seizure and it scared the h*ll out of me. After 2 more I went to the family dr, since I had an idea I would need a referral. She said if it was to happen again go to the ER. It did, and so off we went.
There I was given a CT scan and bloodwork. CT was clear, blood work revealed my TSH level was at 55. I really feel they were more concerned with the thyroid issue than the seizure activity that I had been experiencing. I have since seen an endocrinologist and been diagnosed with Hashimotos, but thats a whole other story.
So after much aggravation in trying to get an appointment with a neurologist I finally was seen. (side note, can I just vent at how frustrating it is to get in to see a neurologist? By the time I had gotten in to see him I had 8 episodes! No meds just very scared times thinking what is happening to me!!! *rant over*)
We did an EEG and the nurse called to tell me I had absence seizures and gave me a prescription for Lamictal. I heard nothing else out of either of them and was left with many questions. At the time I was to upset to ask anything because she told me I couldn't drive for 6 months and that threw me for a loop!!!! I asked him point blank through their messaging system since they don't take calls, and he couldn't tell me about the main reason I went in, which was the jerking seizures. I promptly asked to see a specialist and so now Im waiting till late April to see him.
Now on to the good stuff:
Since I have not been fully diagnosed I will tell you what happens and you can fill me in. Im not sure I have epilepsy, or what to call all this. The internet has been helpful, but I see lots of experience here
When the "episode" happens I get a 1-5 second warning in my head, its like I have spidey sense like spiderman, but its not a pleasant feeling. I think this is called an aura.
My legs and sometimes my arm starts jerking up and down uncontrollably, like when the dr hits your knee and you have that automatic response.
Now my hand will be clenched or else i put them under my legs to keep them calm. I don't loose consciousness and I am able to hear, although I can open my eyes, usually they are closed. Lasts about 30-45 seconds maybe a bit longer, its hard to tell.
Now to the freaky things: Hubby was driving down the road, we were all talking and I suddenly lost my thoughts, I was staring at a building, but I couldn't understand what I was seeing. My vision was distorted a bit, and it was like "I'm looking at a building, but what is a building?" Its hard to explain, but that happened several times that weekend. That seemed like it lasted about a minute.
Next things that happened during the week I started Lamictal.
My head lost its control and fell back so that i was looking at the ceiling. I was doing dishes, and it surprised me. I didn't feel any fear, but after 7-8 seconds I was able to pick my head back up and continue. WHAT IN THE WORLD!!!!
Next, a day or so later I saw this amazing bright light shoot from the outer bottom corner of my eye to the inner corner. Almost so low it didn't seem in my line of sight. It has happened many times since then, mostly at night before I go to sleep. Now, you may say its just a light in the room, or the tv or whatever, but I wear a sleeping mask, so no light enters! Also have seen little specks of light like a glitter floating in the air. Convinced it was a bug or something I turn quickly a few times back and forth trying to catch another glimpse but to no avail. To anyone who witnesses this I seem like I am deranged.
I asked the Neuro and he said to go see my eye dr. I did and they said my eyes were perfectly fine. I have had another episode a few days ago, but it was not near as bad. I understand it can happen since I am currently still going up on my dosage. Not a big deal, but I want to get an MRI and really dig in and see if I can figure this all out! Daily I have muscle twitches all over my body, but mostly the limbs. They didn't start out hurting, but now I have some pain when they occur.
Im sorry for the novel here, I just feel like I can gain some insight to whats going on from you guys, and feel a little more sane.
Its really hard to describe this to loved ones who just stare blankly and nod like you are loosing it. And waiting to see the DR is the HARDEST PART!!!Thanks
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Once you have a neuro, don't be shy about making the most of the those precious visits with him or her by pushing for more information. Before an appointment, write down all the questions you have, and during the appointment write down the answers. Never leave an appointment with questions unanswered or if something is unclear. (It can help to have someone with you, especially since this all so new to you). And make sure you know how to get in touch with the neuro if you have more questions. It's a bonus if they respond to e-mail.
