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F

Frusterated Husband

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Hello Everyone, I'm new to the forum.

Here is my story (condensed)

For the past 5 years my wife has been having seizures. sometimes she just has one a day, othertimes she has 50+ she doesnt even have to time recover from a siezure before the next one comes on. Over the past five years we have had EEG's, CT's, MRI's, ECG's...you name it. All have come back "normal" except the MRI did show a small scar on her brain, the neuroligist dismissed it as to small to be significant. The only meds she has been prescribed are Valium and Ativan, all they do is knock her out. The last test we had was the ambulatory EEG and after the results came back fine, He told her to see a natrualpath and change her diet, because he can do nothing for her.

There has not been a diagnosise to date, and I'm not saying she does or does not have epilepsy, I'm not a doctor. But I'm not accepting his advice that this is caused by diet and stress. I know stress can cause alot of things, but i know my wife. I think that the doctor is just not interested and is coping out of getting to the bottom of this.

I should also add that in the past 5 years we have had 3 children, I have had a family friend (gynacoligst) suggest that hormonal change after giving birth can cause seizures....maybe that is the next step to investigate.

we are just getting really tired of getting passed around and doing all these tests and getting nothing out of it.

Has anyone else gone though the wringer like this? or is it just us?

thanks for taking the time to read my post
 
It IS

entirely possible for hormones to play a part in your wife's seizures. The very best thing to do is to start documenting when they occur. Do they occur around her cycle? When she's on her period? When she's ovulating? Has she had her hormones checked lately? Her doctor (GP or OB/GYN) can order this--though the GP would probably be more likely to do it.

In that panel, you'd want to ask for the estrogen and progesterone levels, as well as a full thyroid panel, because the thyroid is also capable of playing around with those hormones (it has its own hormones--T3, T4, TSH) that should also be checked.

Also, if she is hormone sensitive, some foods do have hormones in them to make them "better" and this could potentially be an issue as well.

Be sure to write down everything that you can in a journal/notebook that you can think of or that you notice that may trigger the seizures. TV? Using the computer? Certain lights? There are some people that are photosensitive and seize because of it.

Feel free to ask any questions that you want...we'll be happy to answer them.

As for the doctor. Methinks it's about time to go doctor shopping. Doctors are NOT gods, although they quite often think so. YOU pay THEIR salaries, NOT the other way around. And just because an EEG doesn't show a positive result doesn't mean a blessed thing--I have had E for more than 40 years now, and I didn't start have any "dirty" EEGs until after I turned 40. In other words, the seizure activity may very well be too deep in the brain to be found.....

There's lots of information to be found here in the nooks and crannies of CWE. Feel free to poke about in them. Kick back, relax, and maybe one of the guys will bring you a decent cuppa coffee--I keep burning them, LOL.

Hang in there, OK????

Take care.

Meetz
:rock:
 
Hi, and welcome to the board.
Yes, definitely get her hormones checked. I get seizures right before my period and when I'm ovulating because of the hormone fluctuation.
I'm surprised the doctor didn't at least try to put her on a anti-epileptic drug, especially if she has up to 50 seizures a day at times. Even if her EEG didn't show positive for seizure activity, they should have tried anti-epileptic drugs first to see if it helped at all. And it is possible to have seizures that don't register on an EEG. I had a 4-day-long EEG in the hospital one time, and my doctor actually told me that they only caught a few seizures (and I had a lot while I was there), so I asked her why, and she said that sometimes they come from too deep within the brain to register on an EEG.
So I think you and your wife should definitely try to find a different doctor. I went to 2 different neurologists until I found one who I feel like wants to help me. He even sent me for a second opinion at Yale after seeing him regularly for a few years and still not having my seizures totally under control with the meds I was on. I thought was awesome because a lot of doctors don't like to admit that there are doctors somewhere else that may possibly be able to catch something he didn't or to think of other tests I could have done that he didn't think of. The doctors at Yale are actually the ones who had me go for the 4-day EEG and prescribed Lamictal after the EEG was over (It was in addition to 2 other sizure meds I'm already on). And now my seizures are almost completely under control. So It's important to find a doctor that is willing to work with you and even willing to consult other doctors on your wife's case.
 
Hi FH, welcome to CWE!

Definitely hang in there -- find a new neurologist to work with, and ask about some of the issues raised above, including a possible hormonal link. I hope your wife can find a treatment that works. As Krista says, even in the absence of a positive EEG, her doc should have considered trying anti-seizure meds to see if they helped your wife gain seizure control.

By the way, her doctor isn't completely off-base in mentioning diet and stress -- those can be what are called "secondary triggers" for seizures. In other words, if you have an underlying seizure disorder, there are often particular triggers that can play a contributing role in causing the seizures. For some folks it might be hormonal fluctuations, for others it might be fatigue, or emotional stress, or food sensitivities.

Best,
Nakamova
 
Thanks for the feedback. Yesterday we had our appointment at the epilepsy clinic. The neuroligist was great. It really felt good to finally be taken serisously. He even took the time to watch a video of one of my wifes episodes. He mentioned exactly what you wrote Krista, and Meetz, that often the siezures are caused to deep in the brain for an eeg to pick them up. He prescribed her keppra and one day later she has had her first siezure free day since September. I realise that it's still early to say that she definatly has epilepsy and that the Rx is treating her siezures.....but it's the first good news we have had in 5 years!! So we are celebrating it!

thanks again!
Jason
 
Thank you dear husband for looking out for me! Things are improving for me and my seizures have been reduced by 2/3rds. Still yet to have a seizure free (that one day my hubby was talking about I had one at 8:30 in the evening...still awesome!) day but we feel we are on the right track now and have hope.
 
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