hello from a forum "lurker"

[Toothie]

Hi everyone, I never introduced myself yet.. I prefered to read and learn first.

I'm feeling misunderstood by most of my family, close friends, first neuro and family doctor (medicare) so I pay more to see another doctor who is more competent and attentive..but still not very knowledgeable about epilepsy treatments. He sent me to another neuro who is 80+ years old, suffering from cancer and who may or may not come back in june.

The doctor wants to wait for the neuro to come back (or not) before changing anything about my medication. I'm feeling better overall with my medication but still get seizures and lately the nocturnal ones are getting worse.. hurting myself and my boyfriend... or disrupting his sleep.

In one week end I managed to hit him repeatedly in his back wirh my elbow, hit my face on the headboard (I cant see it could be anything else). I woke up during the night, face burried in my pillow, sharp pain on my eyebrow bone like I knocked myself hard on something and swollen lip. On the same side, my BOSS noticed a very apparent purple bruise on my lower lip. And.. the aching joints, numb and tingling limbs from dystonic posturing.

So now.. I'm writing this here because I don't know what to do... pay again to see the doctor I saw 2 weeks ago and changed nothing? waiting to do my blood test and gettig the results first? (Will take weeks unless I pay a few hundred more to get it in 2-3 days).

Thanks. That was a long message...

 

[N Sperlo]

Hey lurking Toothie.

Its good to lurk for a while. I did. Most people with epilepsy have trouble being understood by others. I am lucky enough to have an understanding wife, but no one else understands quite as well.

Before my seizures were fully controlled I was giving my wife bruises all up and down her legs while I was asleep. That didn't look good because they would show through her nylons and at the time she was a flight attendant. Not much of a choice in uniform. I rarely hurt myself. Did get a good workout.

Healthcare can be so different in different countries and I'm really lucky to have a good neurologist. If I have any problems, he is able to adjust things immediately. All I have to do is wait for a phone call within a few hours of my initial call. Do you have any more options in neurologists? If he is about ready to give his gig up, you'll have to down the line anyway. It sounds like you're stuck between a rock and a hard place. Dropping more cash is not usually an option for me.
Some others will be able to help you with this question better than I can.

So, welcome to CWE, Toothie.

 

[Toothie]

Thanks for your reply

Well, I called somewhere else (the only place offering VEEG) , they said I lived too far, that there was a 1-2 years waiting list and that I was lucky to have a neurologist because most people with epilepsy are seen by their family doctor. Healthcare is not that good here, especially in neuro. I may ask to be transfered back to my first neuro. Maybe he will understand now since it has gotten worse and I got a report from a ''renowned'' neuro. The first one diagnosed my partials and complex partials as complex migraines (my actual neuro frowned at this). Often, I ask my boyfriend to accompany me because I noticed they take me more seriously this way.

 

[Belinda5000]

hello lurking toothie,

I'm lucky to have a very good neuro who listens who is very knowledgeable.He knows about epilepsy treatments will send me to a specialist since I'm refractory.
I've seen more specialist I've had E for 50 years and the longest I went controlled was 4 1/2 months.

 

[Nakamova]

hey toothie, welcome to CWE!

Any chance you can get your regular doc or you neuro to give you a short-term prescription for ativan? It might help you put the breaks on the nocturnal seizures for a bit if you take one before going to sleep.

Another thing that might help is a magnesium supplement before bed. It's no miracle cure, but since it can help with sleep and with relaxing muscles there's a chance it will provide some relief. I recommend magnesium taurate since it's well-absorbed, and taurine is also helpful for soothing the brain.

Best,
Nakamova

 

[giveasmile]

Hello! Glad you felt comfortable enough to start sharing. I agree with the suggestion for Ativan. When I get stuck in non-stop cycles my doctor prescribes it. The hospitals use it as well.

Glad you boyfriend is willing to go to appointments.. It made a big difference for me in communication when I brought an advocate to one of my visits.

I hate to hear that you can't find a Neurologist. Maybe try calling a major hospital in your area or a medical school and ask for their recommendations. They may have a sliding scale center or be able to recommend a Neurologist on staff who accepts you plan.

If you are having seizures every night, and none of your doctors are responding, I'd continue to try and get someone else. You may have to find transportation or take a bus/train but your health is absolutely worth any cost/debt.

 

[staugie]

Hi!

I was a lurker turned writer too recently. I also have nocturnal epilepsy and was only diagnosed 9 months ago. I have found ativan very helpful too. At first I didn't know what to do with it, but I too use it now when the medication is splotchy/ needs to be adjusted (which seems to be happening alot). I also agree with the magnesium. I have been taking it (liquid form) morning and night for a week or two. It seems to be helping.

Also, avoid alcohol and late eating. In addition, experiment with food. Inflammation seems to make things worse in general. Soy is appearing to be a trigger for me, as is some dairy, nuts and aspartame for sure. Everyone is different, course.

 

[N Sperlo]

Thanks for your reply
The first one diagnosed my partials and complex partials as complex migraines (my actual neuro frowned at this).

It was until I found this forum, I had no clue how good both my neurologists have been, and for that I am thankful.

Often, I ask my boyfriend to accompany me because I noticed they take me more seriously this way.

My wife comes to every visit with me. Not only is she able to give a better description of anything going on, but my neurologist knows that upon leaving, her satisfaction is of the utmost importance.

 

[Toothie]

Thanks for sharing Maybe I don't complain enough in the doctors office... ill try to communicate more written things and show my "journal". Can waking up with tingling/paresthesia in arms and legs (it doesnt last long) be a side effect of AED ? I'm trying to find some answers on google but I guess Ill ask the pharmacist.

 

[Toothie]

I will give a try to magnesium taurate supplement. I'm actually taking B-50 vitamins

 

[Nakamova]

Can waking up with tingling/paresthesia in arms and legs (it doesnt last long) be a side effect of anti-epileptic drug? I'm trying to find some answers on google but I guess Ill ask the pharmacist.

That kind of tingling can be a Topamax side effect, not sure about other meds. Good to check with your pharmacist

 

[grcg71]

Hi Toothie! Check your supplements as well. I recently found out that some have coatings that contain derivatives of Sorbitol. I know that people don't usually give any credence to those stuff that are more often than not present in the things that go in our stomach. In our family, we are very wary of that for having seen our son react negatively to many of them. Ever since he had a double seizure soon after having ingurgitated tea containing vanillin, we have eliminated ALL foods that contain 1) artificial flavours; 2) sugar substitutes; 3) monosodium glutamate.

That time he had that really bad seizure, I visited our university library and came upon an article by a researcher on epilepsy. That particular article was about the elements that he had found could trigger a seizure. He found three, namely glutamates, purines, and something else I don't remember.

Now, in your case, it might be none of those things but there's no harm in checking and if need be, removing those from your diet. Take care!

 

[MAB]

Thanks for sharing Maybe I don't complain enough in the doctors office... ill try to communicate more written things and show my "journal". Can waking up with tingling/paresthesia in arms and legs (it doesnt last long) be a side effect of AED ? I'm trying to find some answers on google but I guess Ill ask the pharmacist.

Is the tingling just on one side of your body? If so, it could even be a partial seizure.

 

[Toothie]

Yes MAB... arm and leg on one side and I wasn't sleeping on it. It hasn't happened since the end of february.. except a deja vu, I felt very good this month.

The hospital called back for a sleep study, but I asked for another day because I'm working and I couldn't cancel so many patients. My employer doesn't know about it and I won't tell him because he is very judgemental. During a sleep study do you stop taking your medication before? For my 30 mins EEG they told me not to stop them.

I stay away as much as possible from monosodium glutamate and stopped my supplements for now.

 

[MAB]

Yes MAB... arm and leg on one side and I wasn't sleeping on it. It hasn't happened since the end of february.. except a deja vu, I felt very good this month.

The hospital called back for a sleep study, but I asked for another day because I'm working and I couldn't cancel so many patients. My employer doesn't know about it and I won't tell him because he is very judgemental. During a sleep study do you stop taking your medication before? For my 30 mins EEG they told me not to stop them.

I stay away as much as possible from monosodium glutamate and stopped my supplements for now.

The 1 hour EEG I had was 3 1/2 years ago. I wasn't on meds at the time and it didn't show anything. The neuro I was seeing assumed I was having TIA's from the stroke and treated me for them It wasn't until I started smelling odors that didn't exist that my regular doctor put everything together and told me to see my neuro again. I told her I didn't like him so she referred me to someone I like and she seems to be helping. New neuro is from India, she practices western medicine with a little easterm medicine thrown in as well.