In summary, I've had undiagnosed TLE since I was 17; had a stroke three years ago aged 39 (which was caused by high blood pressure, possibly as a result of the TLE). Then in February this year, I had a full blown tonic clonic seizure and slashed my head open. Several weeks later, I started having symptoms that are listed below.
I finally got to see the neurologist yesterday morning. He spent about 15 minutes asking me about current medications, living arrangements, work, etc. Then he asked about the seizure in February. I explained that I was at my computer and my right arm felt like it had been hit by electricity and was shaking uncontrollably and the next thing I remember is waking up on the floor. The light was on, but I couldn't see anything. I then started falling into things, which is when I sustained the head injury. After 10-15 minutes my eyesight returned and I managed to get myself downstairs and get help. He said, "I think we have different interpretations of what is a tonic clonic seizure".
We then talked about what has happened since the February incident. I showed him my list of symptoms that started coming on about 6-7 weeks after the seizure and said I think I have had a few nocturnal seizures since then because I vaguely remember my right arm kicking off, then awoke a few hours later with my front teeth loose, and then felt totally exhausted for the rest of the day. Here is a list of symptoms I've had since March, many of them effect me 90% of the time with the occasional reprieve lasting a few days or so.
Impending doom that something bad is about to happen
Panic and anxiety
Start feeling really depressed, worse than I have ever felt before
Hands keep shaking
Diarrhoea
High BP (i.e. diastolic >= 100)
Average heart rate 40-50% increase
Want to urinate every five minutes
Feel sick, loss of appetite and consistency of food is like sawdust
Claustrophobia
Hopelessness
Constant headache for days at a time
Feel jittery
Pins and needles in hands and feet
Chest pains (sometimes)
Feel exhausted, but can’t sleep
Inside my head feels hot like I have a temperature
Breathing is sometimes heavy
Headaches lasting several days
Feel hot despite temperature now dropped to ≤ 19 oC
OCD is worse than usual (e.g. numbers, dates, times and colours [red])
Cramp in right leg
High pitched buzzing sound in ears (sometimes)
Hot flushes down my right arm or in the back of my right hand
Hands and feet are sometimes completely numb when I wake up
See things that aren’t there; e.g. flies, spiders crawling, dirty water in kettle
Can’t remember things; don’t know what day it is when I wake up
I feel like everyone is looking at me
He read them and said "that's quite a list, but I think most of them are psychiatric in nature". I argued that some of them were physical, but he said increased adrenalin could explain most of the symptoms.
He then had me sit on the bench and follow the flash light, touch my fingers, basically I think he was just testing my peripheral vision. Then he started knocking something against my arms and legs to make them jump and scraped something under my foot which I think got the desired reaction. Finally he wanted me to walk across the room, one foot in front of the other, whilst keeping my eyes on him. I failed that test miserably as the stroke has severely compromised my coordination in that respect.
Then we went back to his desk for the prognosis. He said "we like seizures because it gives us something to work with. From what you describe, it does sound like you have temporal lobe epilepsy, but I think the sodium valproate is doing its job and we're reluctant to switch AEDs where they are working, unless you're experiencing side-effects". I replied that the sodium valproate is making me so tired and lethargic that I can barely function most days. He said I could try switching to Keppra, which causes less sedation, but there is a risk that switching AEDs could provoke another seizure.
Finally he says that he's going to refer me back to the stroke consultant, who I see about once every six months, and send a copy of the letter to my GP. And that was it, my first and only appointment with a neurologist.
I don't get it. I've read about other people's first appointments with a neuroglist and how they've been subjected to a battery of tests (e.g. MRI, EEG, etc) and then had further appointments, possibly for years afterwards. I know many or most people on here have things worse than me, but between the TLE, the TC in February and what's happened since, I would like to think that I do belong here and I am not a fraud.
Thanks for reading and I'm sorry I didn't set out to make this post so long. If anyone has any comments about my experience yesterday or suggestions on where I go from here, I would really appreciate your feedback.
I finally got to see the neurologist yesterday morning. He spent about 15 minutes asking me about current medications, living arrangements, work, etc. Then he asked about the seizure in February. I explained that I was at my computer and my right arm felt like it had been hit by electricity and was shaking uncontrollably and the next thing I remember is waking up on the floor. The light was on, but I couldn't see anything. I then started falling into things, which is when I sustained the head injury. After 10-15 minutes my eyesight returned and I managed to get myself downstairs and get help. He said, "I think we have different interpretations of what is a tonic clonic seizure".
We then talked about what has happened since the February incident. I showed him my list of symptoms that started coming on about 6-7 weeks after the seizure and said I think I have had a few nocturnal seizures since then because I vaguely remember my right arm kicking off, then awoke a few hours later with my front teeth loose, and then felt totally exhausted for the rest of the day. Here is a list of symptoms I've had since March, many of them effect me 90% of the time with the occasional reprieve lasting a few days or so.
Impending doom that something bad is about to happen
Panic and anxiety
Start feeling really depressed, worse than I have ever felt before
Hands keep shaking
Diarrhoea
High BP (i.e. diastolic >= 100)
Average heart rate 40-50% increase
Want to urinate every five minutes
Feel sick, loss of appetite and consistency of food is like sawdust
Claustrophobia
Hopelessness
Constant headache for days at a time
Feel jittery
Pins and needles in hands and feet
Chest pains (sometimes)
Feel exhausted, but can’t sleep
Inside my head feels hot like I have a temperature
Breathing is sometimes heavy
Headaches lasting several days
Feel hot despite temperature now dropped to ≤ 19 oC
OCD is worse than usual (e.g. numbers, dates, times and colours [red])
Cramp in right leg
High pitched buzzing sound in ears (sometimes)
Hot flushes down my right arm or in the back of my right hand
Hands and feet are sometimes completely numb when I wake up
See things that aren’t there; e.g. flies, spiders crawling, dirty water in kettle
Can’t remember things; don’t know what day it is when I wake up
I feel like everyone is looking at me
He read them and said "that's quite a list, but I think most of them are psychiatric in nature". I argued that some of them were physical, but he said increased adrenalin could explain most of the symptoms.
He then had me sit on the bench and follow the flash light, touch my fingers, basically I think he was just testing my peripheral vision. Then he started knocking something against my arms and legs to make them jump and scraped something under my foot which I think got the desired reaction. Finally he wanted me to walk across the room, one foot in front of the other, whilst keeping my eyes on him. I failed that test miserably as the stroke has severely compromised my coordination in that respect.
Then we went back to his desk for the prognosis. He said "we like seizures because it gives us something to work with. From what you describe, it does sound like you have temporal lobe epilepsy, but I think the sodium valproate is doing its job and we're reluctant to switch AEDs where they are working, unless you're experiencing side-effects". I replied that the sodium valproate is making me so tired and lethargic that I can barely function most days. He said I could try switching to Keppra, which causes less sedation, but there is a risk that switching AEDs could provoke another seizure.
Finally he says that he's going to refer me back to the stroke consultant, who I see about once every six months, and send a copy of the letter to my GP. And that was it, my first and only appointment with a neurologist.
I don't get it. I've read about other people's first appointments with a neuroglist and how they've been subjected to a battery of tests (e.g. MRI, EEG, etc) and then had further appointments, possibly for years afterwards. I know many or most people on here have things worse than me, but between the TLE, the TC in February and what's happened since, I would like to think that I do belong here and I am not a fraud.
Thanks for reading and I'm sorry I didn't set out to make this post so long. If anyone has any comments about my experience yesterday or suggestions on where I go from here, I would really appreciate your feedback.
