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mygirl071980

Irritated and needing answers

All I am needing is feedback.  I know that I will not get professional input, but to be honest, right now I am not looking for that.  Here is my story and I will express my frustration at the end.

 I was diagnosed at 12 and praise God I have extremely well controlled epilepsy with my lamotrogine.  I have been on 2 100mg in the a.m. and 1 100mg at night.  I had an EEG 6 years ago when I was pregnant.  In all those years I have had 4 seizures.  1 due to a virus and could not keep my meds in, 1 neglecting getting my meds in regularly, 1 metabolism changing due to being pregnant and my most recent unsure, but have my theory.  I had been seizure free for 2 years. It is so well managed there was no need for a neurologist.

 Now for my theory and question: I have been on the same med and dose for 6 almost 7 years.  My husband travels and works a lot.  I am alone a lot! I have three young children.  My family doctor (which I have only had for a month) wanted me to se a neurologist.  When I went I today I wanted to know if d my dose not be sufficient enough for me anymore.  She wants me to wait and get my blood work in a week.  In the meantime, she is changing my med to 300 extended release and sending me for an EEG. I had the results of my EEG with me. My question is; Is this EEG necessary? If this blood work comes back and we find it is low, do I need the EEG? Once again, my epilepsy is extremely well managed! Something triggered this, but instead of doing a repeat EEG is it ok to want to start with a med change first.

 Also to mention I have extremely low vitamin D.  I have read that can cause a breakthrough seizure.

Any feedback is appreciated. I know I do not get advice approved by a doctor.  I want feed back from people who know life with epilepsy. I know it may seem like I am being unreasonable with wondering this. I am just a little frustrated at this point.

Comments

Re: Irritated and needing answers

Could be that your doctor is wondering if a new seizure focus has developed, or if the type of seizure you have has changed.  Your doctor most likely appreciates your cause for concern, being alone and having 3 young kids, so I expect your doctor just wants to cover all basis. 

Re: Irritated and needing answers

With this doctor who knows.  She gave me no information at all as to why she was doing it. Which is more frustrating than anything!

The seizure was the same ol, same ol, so to speak. I may very well be the one who was negligent as far as med at proper intervals.  Really wish she would have checked my levels. 

She is the first neuro I have seen who asked no questions about lifestyle or routines. I was very put off. 

Fortunately, I got a second opinion coming tomorrow.  If they say the same thing, then I will be happy to take the steps the first one mentioned.  Although, will be changing to a new doctor.  Bedside manner speaks volumes!

Thank you so much for your reply!!

Re: Irritated and needing answers

Hi MyGirl071980,

A neurologist ordered an EEG and MRI for me late 1987, early 1988, after partial seizures frequently were leading to grand mal seizures. This was under a government program called Medi-Cruz.

I wanted both the EEG and MRI then, for evidence in court cases under the Rehabilitation Act.

The higher medical officials over-ruled the neurologist, and they held, without any further objection by the neurologist (after his first initial formal request), that trial-and-error attempts with anti-epileptic drugs were safe and effective, unless outstanding evidence otherwise was produced. The federal courts condoned their decision 10 years later, justifying the trial-and-error as standard medical practices.

My first EEG was nearly 20 years after 1987, as was my first MRI (neither one reportedly "revealed" anything). The EEG & MRI were given after emergency surgery by a neurosurgeon. The neurosurgeon also ordered CAT-Scans after any additional grand mal seizures, but while I was getting CAT-Scans in ER everytime someone had called 911, before the surgery, with the neurosurgeon giving me a known ID, the ERs decided the radiation from CAT-Scans was too great of radiation risk.

My last ER visit resulted from my inability to keep my Keppra swallowed long enough for it to work. For me, a dose of Keppra starts helping in about 30 minutes after I take a strong dose when I get strong warnings of an impending grand mal. Keppra also has a short half-life and minimal over-dose possibilities. So, Keppra blood level testing is mostly a check for patient compliance, and little else.

My last neurologist was very undesirable, and I wished to continue to prevent my grand mals while being economical with my Keppra prescriptions. Basically, the medical establishment's position (and the government's) flip-flops in a whimsical manner (who gets what/when/how-much money), as now (after 25 years of the old story), the story is now that EEGs and MRIs must indicate the need for the drugs, instead of vice-versa. (The neurologist is now relentlessly pushing EEGs/MRIs through his facility, seemingly for financial reward being a priority, and threats of stopping Keppra prescriptions as an inducement to comply (he also pushes participating in brain surgery experiments/studies, and he hasn't managed to undermine my saying "NO", so far, anyway (though I'm not getting any non-outdated Keppra now)).

Other Catch-22's for me, include, "ER says go to MD", "MD says go to ER", "neurologist says get routine neurological prescriptions refilled through MD", "MD says all refills must come from neurologist visit", "druggist says Keppra too expensive with too little kick-back", "government says druggist gives out prescriptions trouble-free, despite druggist gave documentation of refusal to fill prescriptions", "MD says no test performed to verify need for prescription", "government wants to know why government was billed (and payed) for test indicating need for prescription" (druggist called MD and told MD to dream up excuse to stop expense, but MD got caught with pants down carelessly covering for druggist).

From my studies, EEGs are for diagnostics to determine if epilepsy is present, and then, to determine possible feasibilities for brain surgery weighted against other treatments' failure/success/side-effects. In practice, after prior diagnoses of epilepsy, EEGs are also frequently abused to tell people with difficult to treat epilepsy that they don't have epilepsy, and to get out of the way of the provider's fulfilling their own goals if services aren't sufficiently profitable/rewarding.

Tadzio

Re: Irritated and needing answers

WOW, very interesting! Thanks for sharing with me!

I feel like she is starting me over from scratch instead of going forward from what is happening now.  It is very well managed! I go years without one.  So, I don't think my type of epilepsy has changed.  The only changes have been physical.  I have three kids so of course there are days I am dragging.  I am almost 7 years older and have never had a medicine increase. Plus, my Vitamin D is severely low!  

Once again thank you for sharing your story with me!

I am very anxious for tomorrow!