Diagnosis trouble please help!!

[Ouarezki]

I initially accepted my diagnosis with open hands because within 10 days it ended 4 months of unbelievable mental and physical pain.

Now however I have tripled my intial dose of Topiramate 25mg and I'm on a side dose of 40mg of Paroxetine (look up my story for details) and I don't even feel as good as I initially did in the begining.

I've put on a TON of weight and I'm so so scared to go back to that dark place but I can't just keep on increasing my doses...i need to know if this realy IS my diagnosis....

I redid another EEG and it came out ALL CLEAN, no sign of irregularities at all (unlike my previous EEGs) which is not what i'd expected because i'd done it a day after a had a pseudo-seizure!

To save you the troube of reading my veery long post on 'my story' i'll cut things short:

I've never suffered from any sort of neurological disorder but have been seeing a psychiatrist since 2009 and under medication for anxiety and depersonalization.

At month 6 of my pregnancy something changed; I became extremely agitated, couldn't sit to watch TV or use the PC or read, I had frequent blows of crying jags and the anxiety I'd felt before was no longer the same...it felt different. None of the meds I took to help worked, even the strong ones! (I tried up to 13). Doctors were baffled and just pinned it down as "pregnancy hormones".
Looking back I believe that at his point i could have developped TLE...what do you think?

After giving birth to my first born insmonia hit hard and more meds were prescribed this is when i had my first ever tonic clonic seizure and I have not had another one since.

It may have been due bad reaction to medication, severe stress and insomnia OR maybe I was suffering from Temporal Lobe Epilepsy since pregnancy???

 

[Hobbes]

a few ultra brief comments (phone is about to die)..

eegs are not like a test where a positive or negative result clearly means one has or doesn't have a problem.. one can have clear eegs and have epilepsy. or a clear eeg while on medication could just mean things are better than before medication. at least for our daughter where reducing drugs resulted in ongoing generalized seizure activity, a clear eeg was a good sign within context. but heck we never did see one of her focal seizures during an eeg and only once got related discharges. an abnormal eeg with readings that correlate with epilepsy is usually epilepsy so those are not something to quickly discount.

 

[Porkette]

Hi Ouarezki,

Hobbes is correct about the e.e.g. you need to have more testing done. My advice is for you to see an Epileptologist if you haven't yet and just be admitted into the hospital for a day or so where they can do a bunch of testing on you like a fmri, spect and pet scan, wada test and others. You should also see a neuropsychologist to see what's really going on and why there's crying. Often that happens with certain types of epilepsy.
Lack of sleep and stress are 2 of the main things that can trigger seizures along with hormones changing for some people. I had seizures for over 40 yrs. and before I had surgery done they Drs. did a lot of tests on me but ti wasn't until they did surgery on me to reduce my seizures that they found damage deep in my brain that not a single test showed and this may be the problem you are having. Here's wishing you the best of luck and May God Bless You!

Sue

 

[Nakamova]

Hey Ouarezki -- as Sue mentions, fluctuating hormones (esp. estrogen spikes that can occur during pregnancy) can trigger seizures in folks with lower seizure thresholds. So TLE does seem a reasonable diagnosis.

Paroxetine is the anti-depressant most likely to cause weight gain, so perhaps your docs could try a different med? Even in patients without seizure disorders, Topiramate is often paired with the paroxetine since it can cause weight loss -- but it sounds as if that isn't working for you. Unfortunately, brain meds affect everyone differently, and sometimes it can be a matter of trial and error to find the right combo. Definitely talk to your neuro about the side effects and the worries you have about whether or not your seizure was a one-time fluke.

After a single seizure event, many neuros won't automatically prescribe anti-seizure medication, or will suggest tapering off after a decent seizure-free interval (usually at least a year). So if the Topiramate isn't helping with the weight loss, and if you may not need it for seizure control, it would be reasonable to discuss the possibility of a slow taper with your neuro.

 

[Ouarezki]

Nakamova: Fluctuating hormones has definaliny been a problem for me. Even after pregnancy as soon as I started feeling better I put on an "implant" in order to avoid another pregnancy and that messed me up even worse, this is the main reason the Drs increased my meds.....however I have removed it now and I'm still worried about my diagnosis.

I've only ever had ONE seizure and although the seizure meds could be the reason i'm not having another one i'm still wondering about all this mess going on in my head. The neurologist doesn't seem convinced.

My psychiatrist however (who'se known me since 2009) and who is an excellent doctor and has dabbed with some neuroogy cases himself seems to be convinced that there is nothing pschological going on.

I know that I do feel weird electrical charges in my head and I feel a fuziness that seems to correspond to a lot of electrical discharge in my brain, I get a lot of deja vu and amnesia-like episodes, 2 of my EEGs have shown very obvious sign of epileptic behaviour BUT the feelings I get during my "attacks" are more psychiatric than neurological you know? I feel extremely violent and then deeply sad and I want to scream and cry and I feel like all this energy has to be released from my body and when the episode passes i'm so so tired ad drained from it all.
But they do fade after the attack....I'm completely PERPLEXED!

 

[Ouarezki]

Hi Ouarezki,

Hobbes is correct about the e.e.g. you need to have more testing done. My advice is for you to see an Epileptologist if you haven't yet and just be admitted into the hospital for a day or so where they can do a bunch of testing on you like a fmri, spect and pet scan, wada test and others. You should also see a neuropsychologist to see what's really going on and why there's crying. Often that happens with certain types of epilepsy.
Lack of sleep and stress are 2 of the main things that can trigger seizures along with hormones changing for some people. I had seizures for over 40 yrs. and before I had surgery done they Drs. did a lot of tests on me but ti wasn't until they did surgery on me to reduce my seizures that they found damage deep in my brain that not a single test showed and this may be the problem you are having. Here's wishing you the best of luck and May God Bless You!

Sue

Porkette thank you but unfortunaty where i'm living right now thay just have a neuroogist or a psychiatrist but nothing inbetween. I'm lucky enough to have found a neurologist that actually understands anxiety and Temporal Lobe you know!! As for DNA test or FMRI or all day stay at the hospital. oh! i'd be lucky. And private clinics aren't interested in such cases they just open up private birthing centers and such so unfortuntaly It's gonna be a while for our health care system to realize that epilepsy and mental health is a wide area of research that needs to be broadened.

Wishing you lots of luck as love and may GOD bless you too

 

[Ouarezki]

Hobbes

Yes I understand your point of view, that is what my family and husband seem to think.

They say that my recent EEG is all clear because I am under medication now as opposed to the previous EEGs
The 1st was performed a day after my first seizure and the 2nd was done a month after the 1st EEG.

 

[Nakamova]

I get a lot of deja vu and amnesia-like episodes, 2 of my EEGs have shown very obvious sign of epileptic behaviour BUT the feelings I get during my "attacks" are more psychiatric than neurological you know? I feel extremely violent and then deeply sad and I want to scream and cry

The thing is, some kinds of partial seizures manifest as as psychic/emotional symptoms -- sensations of fear, loneliness, sorrow or disgust -- especially when the seizures originate in the temporal or frontal lobes.

 

[Ouarezki]

All this so so knew to me. I'd never heard of Temporal Lobe before and everything fits because it's all so very new here anf the field is not really researched it's not a diagnosis that it given to many people.
I don't know about you guys and whether these types of epilepsies and diagnosis are common but I have to resort to forums (i only know this one actually) and websites for information because I don't know anyone else like me.

 

[Nakamova]

I think the majority of people out there only associate epilepsy with convulsions. That was certainly the case for me until I developed epilepsy myself and started researching it online. And the trickier symptoms -- like the psychic sensations -- can be hard to diagnose since they can overlap with other conditions. It's not always easy to figure out what's going on, or be 100% sure of the diagnosis. So it's great that you're researching and getting info and trying to get some answers. I hope you end up with a diagnosis (and doctor) that can figure out the best treatment.