intense head pressure, clenching, & agitation...brief drooling

[elizzza811]

I was diagnosed with 'independent generalized seizures, multiple types' - complex partials, simple partials, and atonics. Currently on Lamictal & Neurontin.

I've been experiencing episodes of intense (my-head-is-about-to-explode) head pressure (not pain), unwillful clenching (my teeth are chipping again), & agitation. The pressure is always at the base of my skull, and it's as if my head isn't 'draining' properly. In fact, this was one of my main complaints 3 months before I crashed my car and was subsequently diagnosed with a seizure disorder in the first place. All of these symptoms seem to cluster together - in other words, I can't have one without the other. Anybody else have these symptoms???

Though my neurologist seems to be brushing all of this off and thinks my meds have everything under control, these symptoms seem to cluster, and they always seemed to increase in severity/frequency before a complex partial seizure.

I've been googling a bit and all I can find is:

- pseudo seizures
- status epilepticus

I see my neurologist on Friday and will be very upset if she brushes this off again. I'll be even more upset if I push for answers and she blames these symptoms on 'pseudo seizures' (which I don't believe in) or refers me to a shrink.

Could these be status epilepticus simple partials? If there even is such a thing? Complex partials on the horizon? I never lose consciousness or awareness during these episodes like I always would with a complex partial in the past. But who knows what's happening in my sleep?

How can I get my neurologist to run another ambulatory EEG on me? Or maybe even an MRA? Something is wrong. She is always in and out of there so fast though that I never have time to push...

Also, and this is a new symptom, I've had a few instances recently in which I was gardening, leaning over something I was planting, and saliva dripped from my mouth. I wiped it up and it didn't continue, but I never had this happen before and I've been gardening for years. Nothing to worry about?

 

[Dolores]

elizza811 - what I can tell you (from personal experience) is that you need to find a doctor who listens to you. Just recently I had very unexpected side-effects from my Dilantin and it wasn't until I got 3 blood tests covering a 2 month period that it became obvious to me that I was "overdosing" as a result of a too quick ramp up when my Dilantin level fell back in June. The saving part of this experience is that my doctor listens to me and my analysis of the situation, agreed to a dosage where I could "detox" for a week and then go a bit more slowly. Being able to have that conversation & respect is a life saver.

I've been on Dilantin for 40+ years and it controls my seizures. I've been with my doctor for 20 years - he's a GP but has told me more about epilepsy and the medication side effects than any neurologist. Because my seizures are controlled he is willing to monitor my medication dosage.

I do know that searching for the right doctor, one who not only understands epilepsy but also listens to all you say and has explanations, is really tiring. But it is well worth it in the end. In fact, if you like your GP you might approach them with what you are experiencing.

I do hope you are able to find a doctor who will work with you as a person.

 

[elizzza811]

Thanks, I think you're right. I think I give this neurologist more credit than she deserves because (1) she does have a pleasant personality (2) she diagnosed me after decades of unrecognized seizures. Honestly though, I think she'd have been as quick to dismiss my symptoms as other doctors, maybe even only running a routine EEG (as opposed to ambulatory ones), had it not been for a car accident. She's always on schedule, a 5-minute wait max, so she probably hurries through. I have to see her Friday because I need refills, but if she doesn't slow down I think that's what I'm going to need to do - find a new doc.

 

[Nakamova]

Chronic teeth grinding can cause some of the other symptoms you mention -- the intense headaches/migraines and neck aches, as well as the issue with saliva. Might be worth checking with a dentist to look into a mouth guard or other remedies.

Do the symptoms have any pattern? Are they more likely to happen at a particular time of day?

 

[SlimBlue]

It's much better to have doc with no people skills, but who listens intently to the symptoms you describe, and goes out of their way to diagnose it.

I had a fluffy-bunny neuro last time, and she was a complete joke. When I left, I told her she should be working with kids as a teaching assistant- with finger paints and glitter pens- not in a hospital treating patients with severe neurological conditions, and proscribing AEDs.

Admittedly that was probably a bit harsh, but that's exactly how she came across. I actually made a better treatment plan for myself by studying my condition and the exact uses/effects of the meds I was taking- and ended up solving a current problem, and reducing my seizures.

I'm not recommending that for you- as I've had my condition 20 years and I just had to discover which of my meds I'd become a bit tolerant to, to stabilise my condition again.

All she wanted to do was up my Keppra, even though I'd repeatedly told her of the problems I have with it's side effects.

 

[valeriedl]

My husband said that during many of my seizures I will drool. I have horrible headaches after a seizure that sound close to what you are having.

I agree with the others you need to find a new dr, this one isn't listening. I had sever back problems for years and I don't remember how many drs I went to that told me there was nothing wrong, my back just hurt.... I finally found a dr who saw that I had a herniated disc and had to have surgery. I know that doesn't deal with epilepsy but it does deal with drs.