Update after V-EEG, so done with doctors.

[StrongerThanEpilepsy]

So I know I posted a few months ago about how I was upset because it seems that doctors were tossing my diagnosis around and I got responses from multiple people so I thought it would be rude to not update.

I had a five day video eeg without any events. I was exercised on the bike three times a day and did hyperventilation twice. Lights were avoided because I am experiencing everyday headaches.

My epileptologist told me that it's probably not epilepsy (lol my username, maybe it'll inspire someone though) because I went on so long without any abnormalities on the EEG and usually people with epilepsy will show an abnormality, even if they are not experiencing any seizures, especially after being sleep deprived. But mine was squeaky clean so she told me that she will refer me to a movement disorders specialist who can further help me.

I didn't realize I was experiencing cardiac problems until I got an EKG and my heart rate was shooting 50-60+ pulses a minute whenever I stood and my resting rate was 100-110 most of the time. It also escalated whenever I changed my position while sitting or lying down, but not as high as standing. Probably explains why I'm dizzy whenever I stand. I wasn't allowed to stand and stretch most of the time because of this, so I was confined to my bed most of the time. My epileptologist told me that this could be a reason for my migraines (my head hurts when I change position so sounds reasonable). She said it can cause events that look like seizures such as blackouts, but she doesn't think my muscle jerks have anything to do with this.

I also got a neuropsych test done. None of y'all warned me how tiring that thing is. We ended up dividing it into two days. The epieptologist told me that my memory was fine according to the test, and now I feel funny for even listing it as a complaint. However, she didn't tell me that I had "slowed motor speed" and "cognitive inefficiencies in some areas", and I don't think I should have needed to download my doctor notes just to find that out.

I'm just a little frustrated because some of the things she told me do not correlate with her notes. She and another doctor noted I had lower facial weakness on one side, which is indicative of a CNS disorder and she ruled out any movement disorders because of this. She also said (in her notes as usual) because most of my events are nocturnal then it's probably something CNS related. But now she is saying it is movement disorder related (isn't that mostly peripheral nervous system or does my anatomy suck?). Maybe she thinks that because of the slowed motor movement but I am not a mind reader. I better not go to this movement disorder doctor and get bounced to another doctor.

I'm really starting to realize that I can not know everything about my life and this may just be one of these things that I may never know and may have to deal with without knowing why and just embrace it and remain fabulous while doing so. It has been almost three years without an answer (short to some of you, but three years is a long time). I'm supposed to follow up with her but I don't feel like doing it anymore. I'm tired of needles, glue, scans, and the different medications. I swear, if I get another test... *says something not family audience friendly*. I just want to live my life freely and be done with this. I'll follow up with my doctor but I don't know if I will proceed with the movement disorder doctor or anything new. She also wants to start me on beta blockers because of my heart.

Maybe my over dramatic side is coming out because I'm irritated but I can't be the only one that feels this way.

Thanks to everyone that has been so helpful to me, this really is a great forum! :e:

-StrongerThanEpilepsy

 

[masterjen]

Why on earth would you not want to go to a movement disorder specialist?? This neurologist may finally be able to give you some answers as to what your episodes are. Movement disorders can have peripheral or central causes. It sounds like some headway is already being made in determining what might be contributing to your episodes, with the identification of a cardiac problem, a potential explanation of your headaches, and the fact that you have unilateral facial weakness. With the added input from a movement disorder neurologist you might finally be able to fill in all the blanks and get treatment(s) that will end these annoying episodes for good. This is what all of us dream of!

 

[Porkette]

Hi StrongerThan,

When I saw my heart specialist and Epileptologist this summer I found out that my aortic root, which was causing rapid heartbeat at times was what was triggering many more seizures
for me and that's because there wasn't enough blood flow to my brain. This could be what's causing your headaches and some of your body aches. I know I had a lot of wicked back pain,
headaches, and times where it hurt to move. You may want to speak to your Epileptologist and ask if this could be triggering the seizures like it did for me. My Epileptologist found out
I had (PNH) periventricular nodular heteropia. I wish you only the best of luck and May God Bless You!

Sue

 

[StrongerThanEpilepsy]

Why on earth would you not want to go to a movement disorder specialist?? This neurologist may finally be able to give you some answers as to what your episodes are. Movement disorders can have peripheral or central causes. It sounds like some headway is already being made in determining what might be contributing to your episodes, with the identification of a cardiac problem, a potential explanation of your headaches, and the fact that you have unilateral facial weakness. With the added input from a movement disorder neurologist you might finally be able to fill in all the blanks and get treatment(s) that will end these annoying episodes for good. This is what all of us dream of!

I guess I'm just tired of seeing neuro, after neuro, after neuro, and other doctors to not get an answer and feel like I may go on through this to only have the same thing happen to me, again.:blowup2: You do have a point though. It would be great if this is the final answer and I can move on with my life. My mom told me to please try at least one more time.

 

[StrongerThanEpilepsy]

Hi StrongerThan,

When I saw my heart specialist and Epileptologist this summer I found out that my aortic root, which was causing rapid heartbeat at times was what was triggering many more seizures
for me and that's because there wasn't enough blood flow to my brain. This could be what's causing your headaches and some of your body aches. I know I had a lot of wicked back pain,
headaches, and times where it hurt to move. You may want to speak to your Epileptologist and ask if this could be triggering the seizures like it did for me. My Epileptologist found out
I had (PNH) periventricular nodular heteropia. I wish you only the best of luck and May God Bless You!

Sue

Thanks! And yeah, my epileptologist mentioned that I'm probably not getting enough oxygen to my brain causing some problems. I'll see my epileptologist soon and we're supposed to discuss the heart issue. I'll update this thread after the follow up.

 

[Nakamova]

Howdy STE --

I didn't realize I was experiencing cardiac problems until I got an EKG and my heart rate was shooting 50-60+ pulses a minute whenever I stood and my resting rate was 100-110 most of the time. It also escalated whenever I changed my position while sitting or lying down, but not as high as standing. Probably explains why I'm dizzy whenever I stand. I wasn't allowed to stand and stretch most of the time because of this, so I was confined to my bed most of the time. My epileptologist told me that this could be a reason for my migraines (my head hurts when I change position so sounds reasonable). She said it can cause events that look like seizures such as blackouts, but she doesn't think my muscle jerks have anything to do with this.

The cardiac stuff sounds a bit like POTS (see http://www.dysautonomiainternational.org/page.php?ID=30) Did you get an official diagnosis from a cardiologist?

Before I ever started having had t-c seizures, I experienced infrequent mild episodes of muscle jerks of my hands. If I remember right, the trigger would be standing up quickly and/or raising my hands over my head (for example, to brush my hair). At the time, I thought they were related to circulation issues, and perhaps they were. Or perhaps circulation issues were triggering a very minor seizure. Sometimes it can be hard to untangle what causes what. All I know is that since I began having big bad seizures, I haven't experienced the hand jerks ever again. Maybe the anti-seizure meds are playing a role...

 

[StrongerThanEpilepsy]

Howdy STE --



The cardiac stuff sounds a bit like POTS (see http://www.dysautonomiainternational.org/page.php?ID=30) Did you get an official diagnosis from a cardiologist?

Before I ever started having had t-c seizures, I experienced infrequent mild episodes of muscle jerks of my hands. If I remember right, the trigger would be standing up quickly and/or raising my hands over my head (for example, to brush my hair). At the time, I thought they were related to circulation issues, and perhaps they were. Or perhaps circulation issues were triggering a very minor seizure. Sometimes it can be hard to untangle what causes what. All I know is that since I began having big bad seizures, I haven't experienced the hand jerks ever again. Maybe the anti-seizure meds are playing a role...

Hello Nakamova. ^^

Thanks for the POTS information and sharing your situation, it's interesting. I haven't been to a cardiologist, I'm not even sure if I'm supposed to see one or not, I wasn't told much besides to follow up (2 1/2 weeks from now). And the meds could be contributing to this. Before all this hoopla started, I did get dizzy when I stood up and could feel my heart beating when I was sitting or lying down, but it wasn't as frequent or severe as it is now since I've been on gabapentin. I got switched from topamax because my head would started to hurt with postural changes (didn't happen before) and my neuro thought the topamax was no longer effective, not that the gabapentin helped either, and steroids only worked temporarily. I got an EKG about 3 1/2 years ago and was told that it was normal and it was pushed aside (from a cardiologist). All of my other EKG's have been normal too (the ones I get with EEGs). Not sure if hormones can make your heart have a dance party or something during certain times of the month. Ironically my jerks and headaches/migraines occur (or go haywire at least) right before/during my cycle and ovulation and it was right before and during my cycle that I was being monitored. onder:

They did make me lie down flat, sit straight up, and stand and my blood pressure was taken individually and my heart rate went up when I stood but one of the nurses said that my blood pressure compensated for it, whatever that means.

 

[Nakamova]

I wonder if a tilt test would be a more useful cardiac test given what you describe. http://www.mayoclinic.org/tests-procedures/tilt-table-test/basics/definition/prc-20019879

Another contributing factor might be dehydration. Topomax is known for causing dehydration, and when you are dehydrated, postural changes can really mess with you. (Apologies if you've already gone over this elsewhere).

 

[StrongerThanEpilepsy]

That test sounds like a nightmare! Lol but I guess people have to do what they have to do. I haven't heard that actually. Thanks for all of the info again.

 

[seagull]

I not heard of tests you all talking about,I guess must have them but as my e straight forward no point in those Spanish Inquisition tests

 

[StrongerThanEpilepsy]

That's good that your case was straight forward. Wish that was my case, 3 years in two weeks and have no idea what this is. I feel like it could have been sooner but I'm probably just being impatient.

 

[walkerjm3]

How long did it take you to get your results? I'm currently in the hospital until at least Monday. Didn't know if they tell you before you leave or not.

 

[StrongerThanEpilepsy]

I was updated on a daily basis on the status of my EEG. So I was admitted on a Monday and then Tuesday my doctor came in and discussed my Monday morning and night results and so on. I really didn't have to "wait" for my results.
Edit: I got dismissed after I didn't have any abnormal activity on day five. I was told on day four that it's probably wasn't epilepsy due to the results and we waited one more day and there was nothing so I got dismissed. Every hospital may not be the same with announcing the results though.

 

[StrongerThanEpilepsy]

Update:
I get to see my neurologist Tuesday. I ended up in the ER three days in a row. The first time was for a migraine. I got home and about 20 hours later, I had a difficult time breathing. like my breaths were only going into my throat and not my stomach (my stomach wouldn't rise when I breathed in). I ignored it but later that night my throat started making weird noises and the breathing issue got so severe that I could only breathe with my teeth clenched hard (surprised I didn't break any teeth, you could hear them cracking) and I started having throat spasms. The pain was unbearable and I broke down in the ER and started crying louder than a newborn baby. I was told it was a dystonia reaction to the medicine I received the night before for the migraine and I was allergic to something from the night I was in the ER with the migraine. My head was cocked oddly too so they said it was a dystonia reaction. About seven hours later I had the throat spasms again so I had to go back to the ER. The doctor said he doesn't think it's an allergic reaction since it happened a second time. I got a throat CT which was clean and the doctor prescribed diazepem in case it happened again. I've only had to use the diazepem once since being away from the ER. Hopefully this is only a temporarily issue and not something permanent.
I wonder if this is what I've had the entire time. I have had weird episodes that when I move fast, my teeth would clench for a few seconds really hard. They haven't happened in a while so I blew it off but with this happening now, I wonder.. seems like everything I experience can fit into some form of dystonia.
I'll update this again after I see my neuro.