advice dealing with doctors & drugs

[spouselost]

My wife had seizures as a child. She has been on Tegratol for most of her life. She had a ten year absence and then they re-occurred two years ago. She has experienced a full seizure or a blackout period (unresponsive/zones out) about once a month for the last 2 years. She is 27. Her job has contributed to a good deal of stress.
Her current doctor's remedy is higher doses of Tegratol or trying other drugs.
I believe there is a need for more investigation and insight:
Why have the seizures reappeared?
Is there stress or diet related issues to be investigated? What can we do to control this? Yoga, Ketogenic diet, etc.
What am I overlooking?

We have an appointment with a new neurologist next week because we do not believe the current doctor is being proactive; his only solution seems to be try different drugs and dosages and wait and see.

What should I ask her (the new doctor)?

Reading this website I see that many others have a more serious problem than us; so if I offend anyone with our inconvenience, I apologize. However, I cannot believe that "wait and see" and "try a new drug" is the only answer.

I am a Software Engineer by trade. So, when I see a problem I fix it. I cannot accept the "answers" from some doctors that "this just happens". I am even more dismayed when an educated professional's only response is "try a new drug."

[RobinN]

Hi Spouselost - Welcome to CWE
I am on the same side of the street with the same opinion as you. The answers just do not make sense to me.

My daughter spent 14 yrs of her life without seizures. It is my opinion that if I can get her back into a state of health and balance the seizures with stop. There is a list of options for you to look at here:

http://www.coping-with-epilepsy.com/...ive-treatments

I suggest you learn all you can about each one, and then talk it over with your wife and her doctor. You ask what are you overlooking?..... I would say anything can be the trigger. One thing I learned here, is that each of us has a seizure threshold. Your wife's threshold just tends to be lower for some reason. Has she had a recent MRI?

There are many reasons why a drug might stop being effective. However your doctor is similar to many that I have run into as well. Too many patients for many years agreed that the answer lay some where, some way with a pharmaceutical drug. Truly I think many doctors just don't know and their best answer for relief is, perhaps another drug might work better.

I am glad that you joined the group. I will enjoy kicking around ideas with you.

[spouselost]

Wow, thanks for the quick response!

I'll let you know how the appointment next week with the new Dr. goes.

I appreciate the link. I want to come prepared with a good amount of research -- from any angle: Pharma, alternative, etc.

Funny, I feel like I am going to a business meeting where I am an advocate, not a doctor's appointment. Perhaps that's for a more political discussion, eh?

[spouselost]

Anyone ever tried stress relaxation? Even Yoga, Pilates, etc.?

I didn't see those on the list you link to. Does anyone have any links to Clinical studies related to epilepsy, especially epilepsy reoccurance, with regards to stress release, meditation, yoga, etc.?

It may sound a bit nieve, but I still believe this was triggered by extreme stress (law school, bar exam, started own practice {ever owned your own business?}). I'm not looking for a panacea, but I think there's some down-to-earth things we have yet to try....

[spouselost]

yes. She had an MRI about 3 weeks ago. The current Dr. had his secretary call us to say everything is "OK"...nothing more. It took him 3 weeks to give us these results....

This Dr. is very bad. We are leaving him.

I was amazed that my wife has never viewed the results and/or had a doctor explain an EEG or MRI to her! Ever! My primary care physician, and my nurse, explained, in detail, a routine EKG to me. I'm 32 and have no history of heart trouble... they showed me why my EKG was peachy.... Well, I was a bit dicky and asked to look at the printout. But, the funny thing was, once they realize I was interested, they were very happy to talk to me in "grown-up" language.

Do you always have to be a dick to get a doctor to talk to you like a human being?

Why would a neurologist not take the time to explain an EEG or MRI to a patient, baffles me... yeah, we're moving on to another Dr. I
sent our current Dr. an angry letter. I called him lazy. Probably won't make a difference, If you live in North Carolina, email me, I'll let you know who he is.

I don't want it to come off like my wife is fra-gile. She is a very capable attorney. She just doesn't handle this side of life very well & has always been taught to agree w/ authority (ie Doctors).

[epileric]

No need to feel naive. Stress is a big factor affecting seizures. I've got an exam coming up & my seizures always get worse beforehand. How much depends on how stressed I am.

Also don't be too hard on your neurologist for just trying different meds. It was explained a long time ago that in western medicine there really isn't much else to do. My seizures aren't really under control but I don't know what else I'd expect my neurologist to do.

I've had numerous bad experiences with neurologists but I've found even the ones I like don't really show me test results. I've never asked to see a one but I always ask what it the results mean & what are might be its implications. What I've learned after years of bad neuros is not to be shy to ask questions or to be too shy to explain what something means. Some don't like being questioned but that way I know not to waste my time with them. After all it is my body & mind we're working with.

Also I've read of people having good experiences with yoga helping their epilepsy. You can also do a search on this site to find threads that deal with other alternatives & what people thought of them. Good luck & Welcome.

[tinasmom]

Has she been on the same brand of Tegratol? Sometimes there are break through seizures from generic drugs. We are on our third Neurologist since August. If you don't like what the doctor is telling you, you just need to find one that will listen to you. Unfortunately, because of HMO's, doctors just don't seem to have time to work with their patients like they should. Good luck in finding a new doc.

[Bernard]

Hi spouselost, welcome to the forum.

Sounds like you are in a very similar situation to my own. I'm a computer geek with a wife with seizure issues. Anyways...

... She has experienced a full seizure or a blackout period (unresponsive/zones out) about once a month for the last 2 years.

My wife completely eliminated her absence seizures (the short zone outs) with EEG neurofeedback. I highly recommend it.

[Bernard]

Do you always have to be a dick to get a doctor to talk to you like a human being?

lol... depends on the

[RobinN]

My daughter is 16 and we have seen an EEG with the doctor pointing to the areas of concern (the first one). The others we have only been told were normal.
We were shown the MRI, and where the area of condern is here as well.
I have a copy, which you have a right to have. You could have someone else read it with you. They can put it onto a CD and easily discuss it with you.

I use to have dificulty talking to doctors and standing up for what I needed. Once it involved a child of mine, I became much more proactive. Problem is now, I just get tongue tied. I think you do need to be an advocate for yourself. Sometimes bringing in research, well documented studies. I had a neurologist that hadn't even heard of catamenial seizures before (those that occur due to hormonal changes).

What I am told by the EMTs that care for my daughter when they come to her school, is never ever give up.

[skillefer]

Hi spouselost! Welcome to CWE. This group is really friendly, and as to docs being dicks, well, yeah occasionally. As for your wife's seizures, the stress she's going through probably isn't helping. Yoga is good for relaxing. I think part of that is because it's gentle and very centered on breathing. Check out the library on vitamin and mineral supplements. Several people on here, myself included, are taking magnesium. If you can, you might consider asking her GP to order blood work for her to find out what her mineral levels are. Also, make sure she eats regularly. I'm hypoglycemic, so if my blood sugar drops too low, I have a seizure. Also, you said her seizures are about once a month? Are they anywhere near when her time of month starts? IF so, this is info you should share with the neurologist. It will help them pick a suitable med for your wifes seizures. Hope this helps. I have seizures, and my hubby is the one who takes care of me. I know how guilty I used to feel about having a seizure because he always looked so worried when I finally came out of it. Especially since my seizures didn't start re-occuring until after we'd been married a couple of years. Just remember, how you react to the seizures has an impact on how your spouse will react or feel about them.

[brain]

Spouselost,

Unfortunately, there are some Docs out there
that are airheads and then there are some that
are precious as gold!

However, I DO WANT you to know one thing,
(I am a computer geek too) SEIZURES DO
CHANGE! They can:

• Go into remission
• Develop into more type(s) of seizure(s)
• Can disappear after puberty
• Can be outgrown
• Decrease
• Increase
• Develop tolerance to medication(s)
• Can be a problematic issue with women who are going through hormonal changes
• Change get better after having a child or children or wax worse after having a child or children (women)
• Unknown reasons

This is not an exhaustive list, but if you'd like
I'd be more than happy to provide you some
links and post it on-board for you to view and
everyone else to view likewise.

Epilepsy is not fully understood; and Neuroscience
while it is still progressing, still has a long ways to
go ~ always keep that in mind.

I noticed you mentioned that your wife had been
on this medication for years; I cannot help but
wonder if her body has begun to develop a tolerance
or resistance to the medication -OR- if the dosage
has ever been adjusted, that is, if ever? But I am
not a Medical Doctor.

I also wonder how often or when was your wife's
last EEG performed? Has there been any changes?
It's perfectly fine that the MRI is normal, that is
not unusual. Having a normal EEG isn't unusual
either.

I am also wondering - are you keeping a journal
or a log or a diary of when your wife is having
these episodes? Are they happening during specific
times of the month? Or when she's excessively tired
and stressed out? et cetera. Such should be noted.
Those can be seizure triggers.

One of the problems with Women with Epilepsy, is
the hormone cycle and if you'd like to know more
about this - I can provide you links on that so you
can learn more and understand it better, after all,
she is a woman now and not a child.

There are NEWER medications on the market now
that have less side effects and they are working
on some newer medications as well; and even
looking into alternative methods - Neurofeedback
has been given considerations and high remarks
when used in conjunction with the Neurologist or
Epileptologist's Supervision with the anti-epileptic drug's so that
there is a balance.

And of course, as always, if you're not happy with
the Doctor you have, you can always find another
one; but the most important part is - YOUR WIFE
and HER DOCTOR - the both of them should be at
good rapport with each other, for that Doctor is
and will be treating her (not you).

[Meetz1064]

Hi there, Spouselost!

Lots of good points have been brought up, especially by Brain.

Yeah, some docs are dicks. Sorry you're having that problem, and you're right to get on that merry-go-round. THE DOCTOR WORKS FOR YOU. But, your wife probably has to get on the med merry-go-round, too, eventually. And while that can be a pain in the arse for both you and your wife, with luck the right med or meds will be found. DO KEEP IN MIND that it takes up to 6 weeks for the med to settle into the system, and as it is being titrated it may be longer. Meds take time to deal with.

Anything that your wife can do to alleviate her stress will help her immensely. And THAT is DEFINITELY easier said than done. Have you considered the guided imagery CDs? I have several friends that swear by them. Very relaxing. Yoga's also good......I can't remember the name of the DVD I ordered online, but you can go that route if you want.

A journal is a must. And it will help the docs and both of you, hopefully, find a pattern to the seizures, and possibly the triggers, too.

Right now, I don't know where I've put my flash drive, or I'd post some sites for you....... when I remember, I will. I left work early....I was in too much pain tonight. I can't think straight tonight.......

Good luck.

Meetz