Hoping for the Best at MRI today

[zoe147]

Hey guys

I'm going in for (another) mri today. The last one the neuro said there were some new additional areas that showed up but that I shouldn't worry. I have simple and complex partials that have been uncontrolled for a long time and possibly nocturnals. My memory and ability to manage routine things has been in a nose dive and I have new break throughs and symptoms (more headaches, constant auras, exhaustion, parathesias, myoclonics and spasms) I will have an overnight eeg next week.

I really don't know what to expect today. I also realize that I don't know what the neuro will be looking for. What can the drs learn from the mri as far as E goes?

 

[Nakamova]

They might be looking for a lesion or any structural (vascular) issues that might be affecting the seizures.

I hope it goes well. Let us know.

 

[CQ:)]

The MRIs can show if there is any damage in your brain which may be causing the seizures eg scarring, tumor.

I've had a few MRIs over the years & they all showed scarring on my left temporal lobe. I had surgery in 2011 to remove the scarring & help control my seizures.

Good luck with the MRI

 

[zoe147]

Ok, I'm back.

Thank you Nakamova; I will keep the updates posted. Now waiting and fingers crossed that all the news points in a healing direction.

CQ, thank you for sharing some of your story. I read in your profile that the surgery helped for a time but your seizures started up again. I also saw that you are now on Tegretol. I hope it is helping!

 

[CQ:)]

CQ, thank you for sharing some of your story. I read in your profile that the surgery helped for a time but your seizures started up again.

The surgery helped control my seizures alot, I did go 2 years with no issues but started having funny feelings in 2013. My neuro thought I was having seizures but wasn't sure what type so he arranged for a VEEG to be done in July this year. They got enough footage to confirm that I am having focal seizures again.

I also saw that you are now on Tegretol. I hope it is helping!

I've been on Tegretol for 12 years, Tegretol was the 1st med my original neurologist put me on in 2002. He started adding meds to the Tegretol in 2004, no meds controlled my partials so he eventually suggested surgery in late 2009 & referred me to a epiologist.

When I had my surgery I was on Tegretol & Keppra, when I got to 12 months seizure free my current neuro & I discussed taking me off one of the meds. We decided on Tegretol which we did very slowly & I didn't get completely of the Tegretol until 2013. It was after I came of the Tegretol that I started having the funny feelings. When I saw my neuro in 2014 he put me back on the Tegretol.

 

[zoe147]

I've been on Tegretol for 12 years, Tegretol was the 1st med my original neurologist put me on in 2002. He started adding meds to the Tegretol in 2004, no meds controlled my partials so he eventually suggested surgery in late 2009 & referred me to a epiologist.

When I had my surgery I was on Tegretol & Keppra, when I got to 12 months seizure free my current neuro & I discussed taking me off one of the meds. We decided on Tegretol which we did very slowly & I didn't get completely of the Tegretol until 2013. It was after I came of the Tegretol that I started having the funny feelings. When I saw my neuro in 2014 he put me back on the Tegretol.

Has increasing the Tegretol helped? (Forgive if this has already been discussed) Are you able to tolerate it well? When I was on Tegretol, it seemed to be working to control my seizures, albeit with side effects, but I developed a rash and we switched to Trileptal. I know what you mean about not wanting to be on high dosages because of the side effects.

Because I have problems that seem to be unrelated (menieres and worsening deafness, vertigo, new onset parathesias, migraines). I sometimes wonder if there is something else going on besides the E or perhaps causing it, if you know what I mean. I often wake up and seem to have "lost" something else and gained a new challenge. Of course this causes me anxiety because sometimes I can't figure out what is going on either medically or in general. Something short of a fugue state and pretty darned confused. But maybe I underestimate the pervasive and progressive changes that E can cause. It has really been a challenge for me to find the balance of meds to dodge side effects, be able to function, think clearly and feel well. I'm still not there, thus the new mris and eegs and med changes.

Any feedback anyone can share would mean so much to me. Do other people have any of these experiences? I can't tell how much I appreciate this forum to be able to share information about E!

:hugs:

 

[CQ:)]

Has increasing the Tegretol helped? (Forgive if this has already been discussed) Are you able to tolerate it well?

When my neuro 1st put me back on the Tegretol in March last year he started of with a low dose but because I was still having the funny feelings the Tegretol got increased & I am now on the same doses that I was on when I had my surgery. I've never had any issues with Tegretol or the Keppra.

Before my VEEG we weren't 100% sure what they were so that was frustrating & I used to overthink about them. My funny feelings reduced after my VEEG as I went from having 4 - 5 a month & now have 1 - 2 a month. I think that now I know the funny feelings are seizures & have answers I'm not focussing so much on them.

 

[zoe147]

When my neuro 1st put me back on the Tegretol in March last year he started of with a low dose but because I was still having the funny feelings the Tegretol got increased & I am now on the same doses that I was on when I had my surgery. I've never had any issues with Tegretol or the Keppra.

Before my VEEG we weren't 100% sure what they were so that was frustrating & I used to overthink about them. My funny feelings reduced after my VEEG as I went from having 4 - 5 a month & now have 1 - 2 a month. I think that now I know the funny feelings are seizures & have answers I'm not focussing so much on them.

I'm so glad that they are finding answers to what is going on for you and that they medication seems to be making a difference. Understanding what is going on can sometimes be half the battle and knowing there is something to help is incredibly reassuring.

Right now they are increasing my meds, I went in for the mri and I go in for an ambulatory eeg this coming week so I'm hoping that we have a better idea of what is going on and how to make it better!

Sending hugs to everyone


:hugs:

 

[Zoe]

Hi Zoe147,

Do keep us posted on your mri results and how you are doing with your seizure management. Happy holidays to you.

 

[zoe147]

Hi Zoe147,

Do keep us posted on your mri results and how you are doing with your seizure management. Happy holidays to you.

Thank you so much Zoe, I will do.

Tomorrow is the 2 day eeg.

Wishing you the happiest of holidays, too!

:xmas: