Surprise temporal lobe epilepsy diagnosis

[Marlayna67]

53 year old woman here, with a 20ish year history of gradually increasing RLS and PLMD. Sleep test ten years ago confirmed PLMD (but I didn't happen to have RLS that night.) Over the years, RLS has become nightly and painful.

I also have a 42 year history of tinnitus, occasional sleep paralysis, extreme sensitivity to noise, history of depression, and upset stomach as a kid.

In the last two months, I accidentally discovered that 2.5 - 5 mg of Valium (given to me by a relative) calmed the RLS. Whoa! Then I had to try and find a doctor who would prescribe it for me.

When visiting a psychiatrist to just make it official for him to give me a script for Valium, he began questioning me and said he suspected temporal lobe epilepsy. I've never had a seizure ... so was completely and totally surprised that an EEG indicated TLE.

I share this with others in case you may identify with it. I am completely flummoxed, as I said I've never had a seizure. I've learned that TLE, in particular, can be associated with sleep disorders.

News to me! I am particularly sad that this was not caught years before. How different life would have been for me, and for my children.

Lyrica is being suggested for now, with the hope to phase the Valium out. I'm not much of a drug person, so this is pretty extreme for me.

Hope this helps someone else out there.

[Madlegs1]

Thanks for the information.

I'm sure many others will be asking about this test.

I hope you can get sorted with the Lyrica, although I imagine the Valium would be a lot cheaper, without as many side effects.

All the best for the future.

[OFgc]

I just picked a tiny detail u mentioned as it reminded me of something I read this week. One symptom of magnesium deficency is noise sensitivity. Have u explored the magnesium route?

[Marlayna67 in reply to OFgc]

Yes, I've megadosed on it. Seemed to help from time to time.

[Hidden]

Good news, you have found a solution that should work for you.

I'm not surprised at your new diagnosis. I have witnessed TLE and can confirm that it is not the same as the classic tonic-clonic seizure usually associated with epilepsy.

I have often wondered if the involuntary movements I experience apparently due to RLS might be TLE, but I'm sure there must be differences in the movements between TLE and RLS.

Would you mind describing your movements in a little more detail, e.g. when do they occur, which parts of your body are affected, are they symetrical, are they random jerks or rhythmical etc?

[Marlayna67 in reply to Hidden]

Sorry for the late reply. Was just at the doc today and he suspects that the RLS are actually mini seizures that happen at night. The RLS I experience is pure pain in legs and shoulders and upper arms. Valium was helping for a time, but it is wearing off now. Trying to figure out next steps.

[Hidden]

Sorry that I am not much help to you. I am confused about what's going on with you. You say you were diagnosed with TLE, confirmed by an EEG.

My experience of TLE is that the sufferer has seizures. This could be confirmed if someone were to actually observe you whilst you were having such a seizure. Mini seizures might not be that obvious.

If your doctor only "suspects" that you have mini seizures, I guess they cannot be 100% certain because they haven't actually observed an event.

However, if an EEG has demonstrated TLE it must have captured an actual event. If you were conscious during the EEG you may have been aware of the seizure and any symptoms associated with it.

Since the EEG seems to confirm you have TLE, the main question here is do you have RLS at all?

If you did experience symptoms during the EEG and they were what you previously thought to be RLS, then you possibly don't have RLS at all.

Also

A diagnosis of RLS is usually made by looking at the symptoms.

The only symptom you identify as being RLS is pain.

I believe that some people do experience pain as part of their RLS

OR

The word they use to describe the sensations they experience is "pain",

However, I have never experienced what I call pain as part of my RLS.

I believe also that even if someone does experience what I call pain as part of their RLS, they will also experience the other classic symptoms of RLS.

Unless you have the classic symptoms of RLS then, on the evidence, I'd say you probably don't have RLS at all.

The classic symptoms of RLS are -

1/ Unpleasant sensations in the legs accompanied by an irresistible urge to move them. Some people might call this pain, I don't. Pain is qualitatively different.

2/ This usually occurs in the evening when falling asleep or keeping still.

3/ This is relieved by moving.

With some sufferers the "urge to move" progresses to involuntary movements often described as "twitches" or " jerks". I experience this and find it similar to an epileptic seixure, but it is clearly not. These stop when I move.

If you don't have the sensations, urge to move, only in the evening and relieved by moving then you probably don't have RLS.

Additionally a first single dose of a dopamine agonist usually relieved RLS, again, if it doesn't, it's probably not RLS.

I have no idea how "pain" fits in. Possibly another issue altogether.

What to do? I understand that you pay for health care and want to avoid expense, but since both T LE and RLS are neurological conditions, it seems best to see a neurologist with a good reputation. I'm afraid since I'm not in the US I can't suggest any.

Only when you have got an accurate and complete diagnosis can you decide (in discussion with the neurologist) what the best treatment would be.

I am not a great believer in "alternative" treatments for anything. I never enter into any such treatment which excludes coincidental standard medical treatment. I am happy to take "complementary" treatment that can be taken at the same time as medical treatment

There may be complementary treatments for epilepsy, e.g. diets.

If I was diagnosed with TLE, I would consider using anti,-epileptic medication. If I ALSO had RLS, there are medications that tackle both conditions.

Lyrica is one such medication.

I apologise if this is rather long winded. I'm really not clear what your problem or problems are.

[Marlayna67 in reply to Hidden]

Hi there. Thank you for your answer.

The EEG did show TLE, which was a total surprise at my age. I've never had an obvious seizure - to myself or others. I do have all the symptoms though - just never would have put them together with the lack of seizure history. The doc just mentioned yesterday that he feels the RLS jerking is possibly my body's way of showing mini seizures.

Yes, the RLS and PLMD (as well as narcolepsy) have been proven in a sleep study, but that was 15 years ago -- before it was as bad as it is now.

I have had tinnitus for 40 years, which is one reason why I can't take most meds (including Lyrica and gabapentin and all the anti-seizure meds). The proclivity toward most meds being ototoxic and increasing tinnitus makes me rather a difficult patient to treat medically.

I go for a checkup tomorrow at my regular doc. The neuropsychiatrist said yesterday that my case is a bit more complicated than he is comfortable handling but he gave me a list of meds to research and ask for at the regular doc as a stopgap measure.

I've sent some emails out to Mayo Clinic and a sleep/epilepsy program in Baltimore. Looks like I will go that route to get definitive answers from docs comfortable with treating me.

All I know is I am absolutely exhausted and must find a way to sleep.