brain surges returned

[goinbatty]

copy of my post back on 8/8/08:
I had a 6 month MRI recently which showed necrosis!  That was such a relief.  Over the past few months, I've had intermittent power surges to the brain.  Sorry, but I don't know how best to describe it.  At first it was occasionally but increased in frequency.  However, with my history of grand mal seizures (x20+ years ago, still on antiseizure meds), I got a bit paranoid.  Had an ambulatory EEG, which lasted ~48 hrs.  Needless to say, I lost loads of sleep having to wear all of that garb, which made the symptoms worse.  During the first 24 hrs, I diaried 10 events.  The second 24 yrs - 37 events.  The surges are extremely brief with no alteration in vision or consciousness at all.  My family didn't know it was occurring until I told them.  I was to have worn it another 24 hrs but declined knowing I would be constantly pressing the button on the monitor.  Neuro said there was no electrical activity suggestive of seizures which was an extreme relief.  It's the strangest thing.  I can go days with no symptoms of this.  I can tell you that fatigue and stress make it worse.  Dr. M and my neuro said it's not a common side effect but some have noted it off and on for up to a few years.  Well if that's the most I have to endure, I'm more than fine with it.  Other than the brain zapping, I'm back to napping a little more.  That comes and goes also.  There again, I could attribute that to other things going on in life.  But the way I look at it is....this too shall pass.  Or at least it better! 

Now for a brief update.  Over the last few days, the power surges to my brain returned.  So far it's only a few.  No where near like I described before.  If you've ever felt the zap from a TENS unit, that is what it reminds me of.  Just my brain rather than nerve endings beneath the skin.  And it's back to feeling like my eardrum quivers when sensitive to louder noises.  Hope that makes sense.  Dr. M said it wasn't that common but has been reported.  Leave it to me to have something odd happen.  Other than that, I believe my hearing is a little more diminishsed on the AN side.  MRI due in 2/09 and will likely have an audiogram before that.  Other than that, all is about the same.  Just wanted to add this in case someone else had this experience after CK. 
Sandra

[pearchica]

Hey Sandra! Hang in there!  Sorry to hear about your rare side effect.  Think of it as an alternative source of energy! ( I really don't know what else to say). Actually it sounds frightening and stressful, yet you continue to have such a positive outlook- you are one brave woman.

I hope you have a Happy Thanksgiving.  Take care, Annie

[goinbatty]

Actually, I consider this minor.  Once I found out it wasn't seizure related, I'm been fine with it.  I just look at it as a reminder to get more rest and take better care of myself in general although I'm not sure stress effects it but it's likely.  Too bad I can't harness some of this energy to lower my electric bill - HA!! 

[ppearl214]

Hey Sandra.

First off... congrats congrats on the necrosis!   I am so thrilled to hear this news!

I know of the "brain surge" as I only had it happen once to me, within the first couple of months post-CK. Honestly, it freaked me out and I phoned my CK team asap-yesterday when it happened.  Total surge, like being electrocuted....I guess.  I reported it to BI and have not run into it again post-CK.  I'm curious if an EEG can pick up on something like this.  But, keeping fingers crossed that its far and few between and doesn't happen again.

Hang in there... and again, congrats on the good news!
Phyl

[goinbatty]

Hi Phyl,
You're the first person I've heard of that had this happen too.  When it happened the first time, I freaked out mainly because of the history of seizures which I have no aura before they occur.  I was afraid my meds weren't working as well or something like that.  But thank goodness, it wasn't seizure related.  I'm not sure what the EEG strips actually looked like.  When he told me there was no indication fo seizures associated with this occurring, I was thrilled.  This time it only lasted a few days and was mild in comparison.  Hopefully that will be it. 
Sandra

[ppearl214]

Hey Sandra,

Yeah, but only the one time. I was actually laying in bed when it happened... very weird feeling, for sure, but nothing since (knocks on wood).  I was also told the same about not related to a seizure (actually, at first, I thought it was a seizure but we were able to dismiss that with testing).  Hoping they are a done deal for you.  Stay well!
Phyl

[Nancy Drew]

Hi Sandra,

I don't have a seizure disorder, but I do take anticonvulsants for another disorder.  Don't know if there is anything related there.  I am not sure if I have what you describe as power surges, but I do have this funky thing that happens in my head from time to time....more so in the beginning after I had GK.  It feels like my brain  expands and then suddenly pops back.  It only lasts a few seconds.  Sometimes it happens many times in a row or all through the day.  Now it seems to be more like one or two times a day...spread out, but then other days it doesn't happen at all.  I wish I could explain it better.  It doesn't feel like a shock....just a "blip" moment in the brain.  I will look for the connection with stress and fatigue....had not thought about this correlation.

I have read about what people say is "wonky head", and I don't think I have this one.  I think of mine as "wacky brain".  It seems like my brain is tryiing to remind me that I had radiation not long ago, and it is in there trying to figure out what to do.  I sure do feel "wacky" when it happens because I can't really put it into words.  Just that "it" is happening again!

Best of luck trying to figure this one out, and I am so glad to hear that it is most likely not seizure related.

Nancy 

[Sheryl]

Interesting topic.  My husband had CK 10/1/07 and has had lots of "weird/wonky" feelings.  His was not an AN but a regrowth of a benign meningioma.  He had been on Keppra at the highest dose and did not tolerate it very well.  We switched neurologists as these "events" (sharp/stabbing/numb/dead/tingly feelings in his right hand and face) were getting more frequent.  He also thought it was a seizure but had a 72-hour (yes he tolerated the equipment for THREE days) ambulatory EEG showing no seizure activity during and not during times that the event button was pressed.  Our neurologist in Florida (we spend time up north and down south) said it was "sparking" and was a form of seizure activity (focal or partial seizures).  He was swtiched from the Keppra to Neurontin and it is about the same but the dizziness from the Keppra has stopped.  Ironically, after keeping lots of notes, stress and fatigue seem to be a common factor.  We have to keep our eye on the good news and that is his tumor has remained stable ever since the CK over a year ago.
Sheryl

[goinbatty]

Nancy, that's interesting the way you describe it.  I know what you mean in that it's hard to put into words.  Hope your's improves. 
Sheryl, on my 3 month post CK MRI, the result was described as a possible meningioma but statistically CK (had this one done at a different center).  Had another one at around 6 months post CK and it termed it CK.  The radiation oncologist told me the treatment would have been the same for either.  Water under the bridge now anyway.  I can't believe your hubby stood that EEG contraption for a full 3 days.  For me, by the end of the 2nd day the episodes were coming so frequently it was driving me mentally nuts.  Hind sight, I was likely paranoid I would knock the leads off among other reasons and just couldn't sleep.  Since then, I've determined my symptoms increase with fatigue.  I've taken Dilantin for 26 years now and it's kept the seizures under control thank goodness.  Way back when I was diagnosed, they were unable to determine the cause.  Glad to hear the tumor remains stable.  I'm due for a repeat MRI in late Jan/early Feb.  Hopefully mine will remain stable or even better, shrink. 
Sandra

[Sheryl]

Sandra - we've come to look forward to the word "stable".  Yes, of course, smaller or shrinking would be more enjoyable!!  Hubby has his MRI followup end of January and, if stable, may be able to go six months or longer.  We took pictures of him in the "contraption" and some of the comments from friends made us laugh - "Beam me up Scotty" or "You look like a character from Star Wars".  The closest facility to us was 80 miles away, and I think some of the cars that passed us did a double take!!

Ironically I have been following through wait and watch a benign growth near my brainstem - sort of like an acoustic neuroma but on the 9th cranial nerve.  I had been having MRI's every year with hardly any growth (3 mm in 7 years) and go to my neurologist this Wednesday for my yearly checkup without having had an MRI.  She told me I could probably wait two years.  I do have a full, heavy feeling at times in my right ear (it is on the right side) - sort of like plugged up and a dull, bearable ache.  I think it is mimicking an AN as everything is so close together in there. 

Good luck in January - keep us posted.
Sheryl

[MaryBKAriz]

Hi,

What a fascinating thread! I don't know what mine is, I haven't mentioned it to the doctor so it isn't severe, mostly weird. It is like a BZZZZZZZZZTTTT! Not a noise but a feeling. Is this like you are feeling only amplified?

What a wild whacky condition this is and the treatments are whacky, too. I am soooo glad there are others here to understand.

Mary

[goinbatty]

I really can only explain it like a mild electric shock that feels like it encompasses my entire brain.  It only last a second but when it happens, it comes and goes so suddenly it catches me off guard.  Not painful, just a mild zap.  Thank goodness it hasn't happened in awhlie.  And yes, you're right this is definitely a whacky condition. 

[Nancy Drew]

Mary and Goinbatty,

What is happening in my brain sounds similar.....just so hard to describe.  The last couple of days it has been like my brain has vibrated, but only for a second or two.  I was telling my husband that I think the radiation is in there working on that tumor.  I haven't told my doc either so I am with you Mary.  I am glad others understand also.  I don't really think, unless they have been through it, that the docs would really understand this feeling.  It is probably something that is not often reported or considered anything to worry about.  I am only two months out now so I am still in the "what is going to happen next" phase?  I'll have to say that I am doing pretty good, and I have nothing major to complain about.  Best wishes to all of you BZZZZZZZZZZZZZZ people!

Nancy 

[Nancy Drew]

Well, that crazy brain sensation has been getting worse so I finally went in to see my doctor.  I had a balance test and hearing test and all of that was fine.  My hearing is the same as it was pre GK so that was great news.  My doc said the weird sensation in my head is not anything related to GK.  He sent me to see the radiologist since he didn't have a clue as to what was going on.  She decided I should have a MRI next week to check things out.  If there is swelling she will probably give me a short round of steroids.  She asked me if I had been sick recently, and I told her I had been sick with a viral infection for most of Dec.  She said she has heard of some weird things happen to the body after viral infections.  A woman she knew had a case of facial paralysis after a bad viral infection.  It eventually went away.  She said the viral connection might be something to keep in the back of our mind just in case nothing shows up on the MRI.  Any thoughts?   Nancy

[sgerrard]

Hi Nancy,

I met a woman who had a viral infection that left her deaf in one ear - at least that what the doctors blamed, they never could prove anything. If viruses can do that, I'm sure they can do some pretty weird things with your nerves if they are so inclined.

I mainly wanted to say how are you? You seem to be doing well, and I am glad to read that your hearing is holding up same as before GK - that is great news. Do share any weird or interesting or boring results from your MRI next week. We are all ears - or half ears in some cases, or various other percentages...

Steve