Mri Of Brain Report

[SarahA33]

Hi there,

I'll try to make this quick. In the beginning of February I started experiencing tonic clonic seizures and was hospitalized for 4 days.

Has anyone else seen this in their MRI or someone elses?

So it says... "Patient presents with new onset of grand mal seizures witnessed by Emergency Medical Techinicians and Emergency Dept. Staff" (How embarassing!) "Positive EEG" "Medium sized contusion resulting in concussion" AND..Small lacune in the right pons. (Oh - otherwise unremarkable mri)

Lacune.. or a lacunar stroke, am I wrong into thinking that this its ridiculous that my brain fog has significantly increased in the last years especially or that some of the neuro symptoms I present during migraines could have caused this? The migraines have always been termed "stroke like" when witnessed clinically. From what I've been told and have the attention span to listen to, or read on my own, it resulsts typically from a pulsating heart rate caused from HTN (not to mention my resting HR). I've got the dis to bring to the new seizure specialist on the 29th.

Can anyone help?

Take Care Everyone

[arizona girl]

I'm sorry to hear this, it sounds sort of scary. Have you had an mri before this last one? We have a friends daughter her dealt with seizures and saw a great doctor here in az. They were able to get it under control and she has been seizure free long enough to drive again.

I'm glad you are seeing a specialist, that is the right course, especially now that the last one caused a head injury. Did you sense this last one coming on before it happened. That would be my biggest concern until you see the doc, is making sure a new seizure doesn't cause another injury. Sure I'd think if you had something going on in your brain it would probably cause symptoms including brain fog.

Often symptoms that we attribute to dysautonomia are the result of an underlying undiagnosed medical condition. I wouldn't be embarrassed at all those care providers witnessed it, as their witness statements ensure that you have the evidence to show something is wrong and it needs to looked into.

Don't give up on pursuing this until you feel like you have the answers that make sense to you. Trust yourself and your instincts.

[MomtoGiuliana]

Sarah--I am so sorry you are having this new medical problem. I can't help in anyway but just wanted to let you know I am thinking of you!

[SarahA33]

Hi Katherine,

Thanks for the supoprt. It's nice to feel like you've got support and people in your corner, especially when they can relate to complex and rare medicial issues. I hope you are doing well.

Arizona girl,

Do you know the name of the Seizure Med your friends daughter is taking? I am on 3,000mg of Keppra and 40mg of Valium. I have tried Trileptal but it lowered my sodium levels too drastically and increased the pots symptoms, and also tried Zonegran, which was somewhat helpful until i developed early stages of Steven Johnsons Rash/Syndrome. Luckily it was caught early enough and we could treat it with IV Prednisone, benadryl and fluids. I also took Zyrtek and oral benadryl. I'll be so glad when this mess is behind me. I'm waiting until the 29th when I see the epileptologist to decide to add Lyrica or put it in reserve. I took a 75mg dose and felt terrible on it. However, if they believe the benefits can outweigh the risks and side effects I will truly give it my best shot. I honestly just want my life back.. I can no longer drive, work, go near water, and have to avoid stairs and heights at all costs. Luckily, I don't remember the seizures at all, but to witness them I've heard is pretty intense. They are somewhat curbed and less symptomatic on the seizure meds, thankfully! Thanks for the encouragement..

[pjlmom]

Sarah I was diagnosed with epilepsy last year having both tonic clonic and petit mal seizure (shown on EEG). I have suffered 2 concusion since then with MRI's showing some swelling but otherwise unremarkable. I have had migraines for years but within the last few years they have presented stroke like. Including blindness, slurred speeches, left side numbness and severe confussion. My EP and Neuro have no idea if it's heart causing brain or brain causing heart or if there is some bigger underlying issue. I am actually heading to Mayo AZ on Monday to see if we can get some better answers. I wish I could give you some better answers I know how frustrating it is and how scary the seizures and all that comes with it can be!!

[looneymom]

Hi Saraha.

Hang in there! Sorry to hear this news but stay in there with your doctors on this one, This sounds like a cause for your POTS. Take care and post when you can.

[SarahA33]

PJ,

your story sounds so similar to mine. Do you mind if I ask around what age you had presented with seizures? I've suffered through brutal migraines for almost 9 years and have tried everything to help.. botox, trigger points, nerve blocks, medications, (prevenative - abortive - and rescue) as well as chiropractic trmts, accupuncture and massage therapy. i've been to the CC clinic amongst tons of other neurologists' who cannot help. Up until this last MRI nothing has ever really shown up on one. The cat scan they recently did after the first two seizures showed white matter, or calcium deposits, which are attributed to having migraine's w/ aura if presented at my age (28) or more commonly seen in MRI of those in later 60's

I wish you the absolute best of luck at your upcoming appointment. Please feel free to PM if anything is too personal.. Have you been diagnsed with POTS? Your migraines sound identical -- pain is always severe on the left side, but behind both eyes, slurred speech, loss/blurred vision, misplacing of words, memory loss, and pain that cannot ever really be described.

Best of luck to you at Mayo! Sounds as though you'll be in good hands and have adequate care where you are locally. I dont know what I would do without my doctors here, they've been so wonderful.

Take care,

Sarah

[SarahA33]

Hi Rachel!

Hope you and Tyler are having a nice start to Spring. Hopefully you have summer's off so you can relax (just a little :-)

Thanks for the support. Can I ask why you think this might be leading up to a cause or even symptom of the pots? My gut told me it was because of the tachy and palpatations that can cause this sort of acute attack. The doctors don't use the word stroke, which confuses me. Hoping to get some answers w/ this specialist, he specializes in seizures and will only see you after unsuccessfull attempts with local neuro's, positive eeg's and 2 anti-convulsants that were unsuccessful.

Hoping you have better news! Sarah

[gjensen]

Sarah, I have not seen you around in a while. I had hoped it was because things had improved.

I hope that you get some answers and solutions soon.

[pjlmom]

Sarah, my tonic clinic seizures started at age 31 but my Nuero thinks that due to the fact that my epilepsy on EEG is presenting as left tempoparietal seizures I could have been having petit mal seizures for a while without knowing I was having them. I was diagnosed with POTS in 2009 but first started passing out in 2006. My severe migraines started around then too. Like you I have tried all form of medication to help my current cocktail of seizure meds seem to help in some way with the headache as preventative but once it's hit nothing seems to help!

Please feel free to PM me. It sounds like we are in the same boat! And thank you for the well wishes and I hope you get some answers at you upcoming appointment too!

Tracey

[Psalm 23]

Hi Sarah,

I'm so so sorry you are having to deal with such serious and frightening health issues. I wish I had some useful information for you. I just wanted you to know that I am thinking of you and hoping this new Epileptologist will be of enormous help to you in providing much needed answers and an effective management plan.

Janet

[SarahA33]

I can't believe I didnt respond to your posts Gjenson and Jan, sorry..

Thanks for the kind words. I have been basically keeping a low profile.. gjenson, I still try to come on and read about how you all are doing. Sometimes I have to read the same post 3 times outloud so i can understand them. I'm going to blame it on the medications, but this has been something that has been going on for qutie some time. How are you doing? Fingers crossed that your making steps forward, this is such a long and hard journey we've all been given.

Jan -- you always have useful information for me. I know you knew how much hope I put into this appointment and that you were just as happy as I was with the results. You are a rock in the lives of those who are lucky enough to be a part of your world.

[SarahA33]

Pjlmom,

Hoping this message finds you with some new answers that have helped to improve your struggles.

How did Mayo go? I'm so hoping they were able to provide you with some hope and new treatments.

Sarah

[DeGenesis]

I have had several petit mal seizures (now called partial seizures), but the neurologists I have seen do not take them seriously. I also had a negative EEG. I hope that it does not develop into a seizure disorder. I have heard of many cases starting in this way.

Sarah, I am glad that you tolerate Keppra. If you don't get the rage or depressive spells, Keppra is one of the best medications for controlling epilepsy. There is also a new drug called Fycompa, which many doctors are not aware of. It is only approved to treat partial seizures, but so is Keppra, and it has turned out that Keppra has broad-spectrum anticonvulsive activity.

If you have had a traumatic brain injury, as seems to be the case from your MRI, methyphenidate (Ritalin, Concerta, Focalin, etc.) are standard treatment options to improve cognitive impairments post TBI. There is much research to support this, and it should not lower your seizure threshold significantly, if at all. Consider seeing a specialist in TBIs.

[SarahA33]

Hi DeGenesis,

Thanks for your reply. I actually dont have a TBI. (from what I've been told anyway) The Lacune seems to be the least of my problems at this point.

I was diagnosed with Generalized convulsive Epilepsy. I still have seizures but they are no longer grand mal as they were before Keppra. Even though the Keppra doesnt completely take away the seizures, the episodes are less intense. Pre-Keppra I was in the process of being intibated before I suddenly came out of it. My seizures now consist of staring spells, "floor drops", memory loss pre and post seizures, sometimes I cry and others I yell. I shake and my fists clench up, along with the rest of my body. They are much worse for others who witness them as I don't remember anything. I now take Keppra 3,000mg and Valium 40mg.

I have positive EEG's, w/ 30 minute and 24 hour monitoring. I am scheduled at an Epilepsy Monitoring Center at the end of June.

My greatest side effect from keppra is the loss of balance and coordination issues, as well as the psychological side effects. Since I've been on the Keppra for so long those have subsided.. crying spells, needing to be alone. I was tried on Tripletal and Lyrica which were just awful and completely the wrong types of medications. I was then tried on Zonegren but had to stop as 3-4 weeks after I ended up having a pretty nasty allergic reaction. I now know I'm allergic to sulfa drugs.. cipro, bactrim, and zonegron.. etc.

So sorry to hear about all youve gone through. Good luck with everything, hopefully we will both have better news in the near future. Thanks for the advice on meds, I will bring up to the doctors when I am admitted

Sarah

[gjensen]

I can't believe I didnt respond to your posts Gjenson and Jan, sorry..

Thanks for the kind words. I have been basically keeping a low profile.. gjenson, I still try to come on and read about how you all are doing. Sometimes I have to read the same post 3 times outloud so i can understand them. I'm going to blame it on the medications, but this has been something that has been going on for qutie some time. How are you doing? Fingers crossed that your making steps forward, this is such a long and hard journey we've all been given.

Jan -- you always have useful information for me. I know you knew how much hope I put into this appointment and that you were just as happy as I was with the results. You are a rock in the lives of those who are lucky enough to be a part of your world.

No worries Sarah.

I am stable right now, so I have nothing to complain about. Thank you for wishing me well.

It sounds like you are going to the right place. My family and I will say a prayer that this leads to answers and effective management. Also that all goes well between now and then.

Looks like June is a big month for quite a few people on here.

[SarahA33]

So glad you are doing stable! Thats great news..

My biggest problem is until I leave. My poor fiance.. he suffers such a great deal. The hardest part is not being able to recall major things before I have a seizure, I have not one warning sign. We met with my epileptologist and he asked when my last seizure was and I thought it had been a week previous, turns out I couldn't recall having one in the car a few days prior coming back from dinner with our friends. I didnt even remember dinner. So bizzare. Anyway, I had just gotten done telling the doctor I wasnt depressed and then I flew into tears. I told him to blame it on the Keppra

Keep Well!!

[SarahA33]

..

[DeGenesis]

Good to know!

[Friedbrain]

I know what it's like to have status epilepticus, a dramatic if not traumatic (because we were unconscious!) experience. It, and subsequent grand mal seizures, were all nocturnal so my husband knew but I never did. I was first on depakote but that didn't stop them. I've been on 3000mg keppra since 2003 wo problem. I started being woken up in the middle of the night w what they thought were maybe partial "breakthrough" seizures so 75mgx2 lyrica was added c2005. I'm still on that. I was mid 30s when this started. No history if migraines but 1.5 months before the se, I experienced sudden onset MS like symptoms, had been hospitalized, on high dose steroids. They never figured out what caused any if it so after the seizures started, we switched to managing instead of diagnosing.

I had lotsa MRIs at the time and they saw "nothing". A more recent one was "fine", but when I read it, I saw that it mentioned lots of small white spots that would be typical for an elderly person (which I'm not, thankyouverymuch). A new Neuro commented that that MRI was NOT normal but that, since MS had been ruled out w thorough testing and I'm still okish, it's probably not. His Best Educated Guess is Sjogren's. fwiw.

I have erratic Bp and hr sometimes, going very low, worse under stress (when my head symptoms occur). I've wondered...hypothesizing...whether my body shocked itself and the adrenaline caused the seizures. I have a feeling like I'm going to have a seizure when I used to get the epinephrine shot at the dentist's office-awful! Anyway, take care and good luck!

(Edited because my clumsy fingers turned a word into a bad word-sorry!)

[blueskies]

Hi Sarah,

I'm sorry you are having such a tough time of it. Not commenting on your seizures because I don't have them

I just wanted to say that when I had my last MRI on my head about 7 and half years ago - I was in hospital at the time because of POTS stuff, and I got to see a number of my specialists (i seem to collect 'specialists'). My neurologist (who is not my pots doc) ordered an mri because of the frequency of my migraines. He said my head was fine but that I had quite a bit of 'white matter' but not more than he would expect of someone who had migraines at the frequency I experienced. I was 51. Hence, I took it to mean that lots of migraine caused more white matter. As insane as it sounds I was glad to have the white matter because it seemed to leave no one in any doubt that I was experiencing as many migraines as I said I was. They stopped questioning my migraines after that.I'm not really sure if it was the MRI or the stay in hospital when they witnessed my migraine intensity and frequency but from that period on none of my docs have questioned my migraine frequency. They just finally treated it. As best they could.

blue

[gjensen]

So glad you are doing stable! Thats great news..

My biggest problem is until I leave. My poor fiance.. he suffers such a great deal. The hardest part is not being able to recall major things before I have a seizure, I have not one warning sign. We met with my epileptologist and he asked when my last seizure was and I thought it had been a week previous, turns out I couldn't recall having one in the car a few days prior coming back from dinner with our friends. I didnt even remember dinner. So bizzare. Anyway, I had just gotten done telling the doctor I wasnt depressed and then I flew into tears. I told him to blame it on the Keppra

Keep Well!!

I imagine the wait is a challenge, but you are close. I am excited for you.

I wish that I could comment more, but I have never experienced anything like it. All I can do is root for you.

That is very thoughtful of you to think of your fiancé. It is helpful to remember that our partners and family members go through this to. I am sure that his concern is for you though.

I do not think telling your doctor that you were not depressed through tears was especially effective. LOL. I am sure he understands though.

I should not have said that I was stable. That is how it is for me though. I am so up and down. I am fortunate that I get breaks though. My breaks are not completely normal, but manageable. I am thankful because some do not get those breaks.

[DeGenesis]

How are things going Sarah?

[SarahA33]

Hi, FriedBrain, Thanks for sharing your story, I'm so sorry you've had to go through all of that. I often wonder myself if they'll ever really figure out what's causing my seizures, 1/3 of those with Epilepsy never find out. Percentages aren't in my favor..clearly. Right now the generalized convulsive epilepsy is the diagnosis. I just don't get it at my age. BTW - I also was compared to an elderly person (someone in their late 70's to be exact) because of the CT showing White Matter/Calcium deposits. (The same thing happend though when I had my stress test..isnt that depressing!) I was assured it is seen in those later in life but also those who are younger who experience migraines. I've had chronic migraines for years so i'm guessing that's what It's related to. I've been tested for MS in the beginning when the migraines started, and the spinal tap ruled that out.

Degenesis, Thanks for checking in. I appreciate it..My long term inpatient monitoring got post poned until June 30th because of ear infection and fever. I have to finish my antibiodic before the testing begins. I was so bummed... I wanted nothing more than to get this over with and hopefully find some answers. I wish I had better news..

Blue, Sorry to hear of the migraines. Arent they just awful? The problem with trying to explain the pain to a doctor who doesn't specialize in migraines feels almost impossible because you can't see the disease nor is there really diagnostic or testing tools. I have to agree with you, once the white matter was explained it actually made me want to send the report to doctor's from years ago who blew me off or doubted me.

Thank you everyone for your support!!