Headaches? Brain Scar? Two Unrelated questions...

[emily.tyrant]

1. Has anyone been told that they have a scar on their brain? (a scar not caused by surgery) If so, what does that mean or what was done? I was told in my last neurologist visit that I have a small scar on my brain but that he was going to have someone else look at the MRI, which kind of left me hanging as there was no explanation offered.

2. Has anyone experienced increased headaches uncorrelated with medication start/stop times? For example, I start a new monotherapy med in the spring but just now have had an increasing amount of headaches over the past month. (I never had headaches before October.)

Also, how often and under what circumstances do you contact your neurologist? (I don't want to bother mine even if I have an unprovoked seizure...)

 

[KatieCoy83]

My doctor is always booked solid. Last time they sent me the notice telling me to schedule my next appointment I couldn't get in until 2 months later.

I haven't had to call for anything so far. But she gave me permission to raise my dose if I need to.

When they mess with my meds I'm usually light headed for a few days.

 

[Cint]

1. Has anyone been told that they have a scar on their brain? (a scar not caused by surgery) If so, what does that mean or what was done? I was told in my last neurologist visit that I have a small scar on my brain but that he was going to have someone else look at the MRI, which kind of left me hanging as there was no explanation offered.

I've been told I have scarring deep in my hippocampal area of the brain after they they did a VEEG and were considering surgery for me for seizures. That means that is the damaged area and where the seizures originate for me. But for me, they could not go there because that is the area that controls speech and memory.

2. Has anyone experienced increased headaches uncorrelated with medication start/stop times? For example, I start a new monotherapy med in the spring but just now have had an increasing amount of headaches over the past month. (I never had headaches before October.)

Sometimes if you have been on meds for a while, they can bring on headaches months later if they are controlling the seizures.

Also, how often and under what circumstances do you contact your neurologist? (I don't want to bother mine even if I have an unprovoked seizure...)

It depends on your neurologist and the type and severity of seizures/side effects of meds. If the frequency of seizures is increasing, then definitely call the dr. Or if the headaches continue, call the dr. and get some relief. Remember, they are working for you! You are NOT bothering them!!!

 

[CQ:)]

1. Has anyone been told that they have a scar on their brain? (a scar not caused by surgery) If so, what does that mean or what was done? I was told in my last neurologist visit that I have a small scar on my brain but that he was going to have someone else look at the MRI, which kind of left me hanging as there was no explanation offered.

Hi Emily,
I had my 1st seizure when I as 9 months old & continued to have tonic clonic seizures until I was about 3. I went 21 years seizure free until I started taking seizures again in 2002 when I was 24. After my seizures returned I had an EEG & MRI. The MRI showed scarring on my left temporal lobe so my neurologist confirmed that I had temporal lobe epilepsy & the seizure activity was coming from the area where the scar tissue was.

After my seizures returned I mainly took simple/complex partials, we tried 5 anti epilepsy meds but none helped get the partials under control.
At the end of 2009 my neurologist said there wasn't much more he could do so suggested I looked into surgery & referred me to an epiologist.
I couldn't get in to see the epiologist until June 2010 but after I saw him I started going through the pre surgery tests & found out at the end of 2010 that I could have surgery.
I had my surgery in March 2011 where the neurosurgeons removed the scarring from my left temporal lobe.

Also, how often and under what circumstances do you contact your neurologist? (I don't want to bother mine even if I have an unprovoked seizure...)

After my seizures returned I was probably a bit slack with how often I went to my neurologist. I used to wait until I had a few seizures or couldn't work out a trigger before I saw him. I sometimes waited 6 months between appts before I saw him then I would go in with a couple of pages of seizure activity. In the end my neurologist asked me not to wait so long between appts & to let him know when i did have a seizure.

When I had my surgery I went through a epilepsy program & had regular checkups at the epilepsy clinic where I had my surgery. I no longer see my regular neurologist as I just see the specialists at the epilepsy clinic (they do keep my regular neuro up to date though). After my surgery I had to go to the epilepsy clinic for regular checkups with the neurologist, for the 1st 12 months I went every 3 months then it was every 6 months & now I only have to go there every 12 months. All my appts are booked ahead of time & I usually only talk to the neurologist when I see him at my appts.
I do have a neuropsychologist & epilepsy nurse who are part of the epilepsy program I went through so if I have any concerns or questions I email my neuropsych or epilepsy nurse & they either help me with my queries or follow it up with my neurologist & get straight back to me.

 

[Emee]

I was told I have a scar caused by an injury. Also, one neuro thought it might have been caused by migraines.

 

[qtowngirl]

hi emily,
yes unfortunately. they went in in august to remove a lesion and also found sclerosis (hard scarring). have you ever been in a bad accident? head injury as a kid etc? just possibilities for scarring but sometimes it's simply undefined. there wasn't a 'definate' reason for mine, but likely due to 20 years of seizures on a weekly basis. if they have found a scar on yours it needs attention; am hoping you get dr. proficiency and ongoing appts to get it all figured out. likely more scans (and many times there is the option of surgery). HUGS and best of luck.

John Hopkins / Mesial Temporal Sclerosis
Mesial temporal sclerosis (scarring in the inner portions of the temporal lobe) may be caused by oxygen starvation to the brain, head trauma, or brain infection, but can also occur without an apparent cause.
Over time, neurons die and scar tissue tends to form within the hippocampus and amygdala (areas in the temporal lobe responsible for emotions and short-term memory).
Mesial temporal sclerosis (also known as hippocampal sclerosis) can cause a form of temporal lobe epilepsy with partial (focus) seizures that can spread or secondarily generalize and affect other areas of the brain.
Treatments for temporal lobe epilepsy caused by mesial temporal sclerosis can include anticonvulsant medications and surgery.

 

[RobinN]

My daughter has been told that she has a heterotopia, which they also call a birthmark.
This was pointed to when she had her first seizure. She had not had seizures the first 14 yrs of her life, and she has not had a seizure in over 3 yrs since we have targeted hers as being gut/insulin/hormone related
.

I dealt with headaches (migraines to be precise) for 30+ yrs. I was able to eliminate them entirely by taking magnesium. I have not had a migraine in over 9 yrs.