newbie with lots of medical issues - now seizures?!

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ramona11

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I am a newbie to this forum but not to medical issues. I have lots of medical issues - hesitant to make a long laundry list here - but am now having the possibility of seizures added to the mixture. I have been in and out of hospitals a lot this past year and there are more questions than answers, still. I have other neurological issues, so there could be some cross over, too...

I was originally thought to be having strokes, as my right side was going completely weak, then diagnosed with seizures followed by Todd's paralysis. Next came seizures with altered mental status. Now I have started having some head shaking episodes that last just one or two minutes. Could THOSE be seizures, too? I am on Topamax, but I really think it is causing more problems than it is helping, so I am being taken off of it and finding a new neurologist.

So, to narrow this down to one question. Could head shaking from right to left for just one to two minutes be a seizure? I have a partial video that my son took today. Ha - he didn't let me know he was taking it and only told me when we were in the doctor's office afterwards. (It happened in the waiting room - just an internal medicine doc, though).

Thanks,
Ramona
 
Hi ramona11 and welcome to CWE!
You don't give any info. regarding what your other neurological issues are (and that is your right :) ) but a couple of things pop into mind as to what could be causing the head shaking, besides seizures: benign "resting" tremor, mild cervical dystonia, parkinsonism tremor (which doesn't necessarily imply Parkinson's disease), and compression of any or all of the nerves in the cervical spine.

I hope you get to your neurologist soon. Ideally, request to see an epileptologist regarding diagnosing the epilepsy as yes or no. The stroke-like symptoms you describe can also occur when the is compression of nerves in the cervical spine. An MRI (not a CT scan) can help identify if this is happening or not, as well as check the brain for anything there that might be contributing to your issues (eg. a congenital abnormality that is only just now causing you issues). Good luck in getting some answers!
 
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Were you cautious at the time of the shaking and knowing you were doing it? If not there is a possibility that is was a seizure.

A few years ago I had a problem with shaking. It was in my arms and legs and would last for hours at a time. My drs think it was due to all the stress I was having at the time. It lasted for a few weeks and as things calmed down it started to lessen and once I finally calmed down the shaking stopped.
 
Just to confirm, you were diagnosed with seizures? Did they do an EEG study on you? Nothing you are describing is inconsistent with a seizure, but you need testing to be sure (usually involves an EEG study and MRI/CT scan).
 
Thanks - I appreciate your input. I'm not trying to be elusive - just weary of all the medical issues... I have adult onset generalized dystonia (rare), have had DBS surgery for that, and it has also started affecting my respiratory muscles within the last couple of years (even more rare). I was at Mayo in Rochester a few months ago and was diagnosed with Diabetic Autonomic Neuropathy. I also have hypertension and a handful of other issues.

The head shaking is new and comes on suddenly. It is unlike any dystonia issues I have ever had before, since it only lasts 1-2 minutes. My dystonic storms are generalized and last much longer than that, when they hit.

Does that help any? Again, I apologize for seeming elusive. I am just weary at this point. I think the new neuro I am being referred to locally does a lot of work with epilepsy, although I am not 100% certain.

Btw, EEG's have been normal. However, during the photo part of the testing, my dystonia is triggered something awful. My body shakes in sync with the flashing lights, although it does not show up as electrical activity.

Thanks again!
Ramona
 
I see a couple more replies now. I am not able to have MRI's, due to the wires i my head from the Deep Brain Stimulators. The EEG's were basically normal, although my body shook horribly during the photo part of the test.

I am fully aware of what is going on with the head shaking and I can tell when it is coming on. One of my hands kind of starts trembling a bit before the head starts shaking. I remember it fully but am a bit foggy headed afterwards.

Thanks for the input.
Ramona
 
Thank you for having the courage to post Ramona and the clarifications! After you had your EEG study done, did your neurologist classify your head symptoms as dystona? Did you ask your neurologist whether or not your symptoms were dystonia related or seizures? Honestly your neurologist is in the best position to evaluate the difference between the two, esp since they have the complete results of your testing (I know that is a less than satisfying answer).
 
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I have not been able to see a neurologist since the head shaking has started, so I have only talked to my internal medicine doctor about it. The neurologist I was seeing in the hospital told me at one point that my problems were "two pay grades above his level" and now he is not returning any of my phone calls... Thus the new referral. I know there is probably another long road ahead, but I am now having to come off of the Topamax, due to extreme weakness and breathing issues that may be related to it. I have just started reducing the dosage this evening, so we will see how that changes things

Thanks again for the input.

Ramona
 
Hi Ramona,

I am so sorry for all you are going through. It must be very hard.

Perhaps the best question to ask this forum is for a good neurology referral from someone that likes their neurologists and feels like their neurologist is on the ball. If this is something you are interested in, please include what part of the country/world you are in.
 
Hello Ramona and welcome to CWE! :hello:

I also have "head shaking". I call them jerks but my head swings to the right multiple times in a row(about two swings per second) and it lasts for a few seconds. Sometimes they are single but they are mostly several in a row. Mine usually cluster though, so I'll have a few head swings, and then 15-30 seconds later, I'll have more head swings. They usually swing to the distance of my right shoulder. Sometimes I have shoulder jerks too, so if I swing my head while I'm simultaneously jerk my right shoulder, I'll hit myself in the head. If it's a "good day", they will be mild and it will just look as if I'm trying to look at something to my right, several times, double takes I guess haha. Movement disorders were ruled out for me due to something on my neurological clinical exam that the first two neuros missed. (you know when they shine a light in your eyes, make you walk, test your strength, etc.)

Let's say your head is facing dead center, you are looking at something in front of you. Are you implying that your head swings to the right then back to center, or from the right and then to the left, and passing the center?

Nocturnal seizures haven't been confirmed with me yet because my neurologist wants me to do a V-EEG, but I'm in school right now and my insurance isn't covering the full cost of it. I have waken up with a bloody bitten tongue and right side weakness. Considering I haven't had as many head jerks lately and have only had two "sleep seizure" incidents this summer, I've decided to not go with the V-EEG unless it gets bad again. Probably not the best idea, but I have to be realistic. Plus both of the times I had an EEG(one outpatient 30 minute, and an ambulatory), they came back normal, I didn't have any movements though, so this is why the neuro wants me to do a V-EEG.

I was on Topamax for two years but I got off it because it was no longer helping my migraines and it was causing weird language effects such as dyslexia. It did stop the jerks during the day time(mostly) but the nocturnal ones were still roaring(the head jerks wake me up or they start less then 10 seconds after I wake up).

To answer your question, this can for sure be seizures. However, I have puzzled multiple doctors because of the severity of it and because of that, doctors swing multiple diagnoses from PNES, movement disorders, tic, seizures, possible migraine. The first three were ruled out. I started getting migraines at the same time as these jerks started so I guess my neuro wants to see if the movements have something to do with it, especially considering that I wake up to migraines. I don't have an "official diagnosis" and most doctors I have went to have left me hanging. I call it epilepsy because it is easier to say "epilepsy" than to have to explain that a doctor has not come up with a correct diagnosis yet, that leads to questioning that I'm not up for. My current neuro is an epileptologist and she has been the most thrilled with examinations and explaining things to me. She won't diagnose me unless I get a V-EEG though. :| If you haven't seen an epileptologlist, it probably is a good idea to do so since they deal with difficult cases more than a general neuro.

Hopefully you'll find out soon what is happening. :)
 
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OK, today is a new day and I probably should not have posted when I was so tired in the evening. I have learned better to do that in most cases, but I guess I fell off the wagon last night. ;-)

I live in Alabama and have a Movement Disorder Specialist that I see in Birmingham for my Dystonia and DBS programming, etc. He is pretty focused just on the dystonia and has one "hammer" for everything - it's called "let's reprogram your DBS system!" That just isn't always what is needed, so it gets a bit frustrating and he seems limited in other areas of neurology. He is very hard to get an appointment with outside of my regular 6 month appointments, too.

I had a neurologist here in North AL who was also able to program my DBS system, but he is refusing to return phone calls and does not seem to be well versed in seizures. As my husband has pointed out to me - I don't trust him, either. Long story, there, that I won't go into...

I am being referred to a local neurologist who does specialize in seizures, and I called their office to see when they are making appointments for - just towards the end of this month. Not bad at all for a neuro!

Regarding the head shaking - it is a very definite and hard side to side, "no no" type shaking that is so strong it can leave me with a headache. This is not like any dystonia problem I have ever had, as it only lasts 1-2 minutes and leaves me a bit groggy. I have a video of the last half of one of the episodes - my son took it and I was able to see myself for the first time when it was happening. Weird. It actually was winding down by the time he got the video going, though. Is there a place to upload those here? I could put it on Youtube and make it private with a link to it here. Would that help?

Thanks again for the help,
Ramona
 
Hi Ramona,
Sorry you have SO many problems and just adding E is not fun. I don't have the Deep Brain Stimulation, but I did have brain surgery, a Left Temporal Lobectomy that was unsuccessful.I went into a deep, deep depression and was put on many anti-depressants, to no avail. A "shrink" finally put me on an anti-psychotic, but that caused me to have TYPE 1 DIABETES! So now I also have to take insulin shots morning, noon, night and with snacks! After trying numerous AEDs for the seizures, I finally had the Vagus Nerve Stimulator. That has helped me tremendously. And I can't have a MRI, either, unless I have the VNS turned off.
It didn't stop the seizures, tho. I think it has helped with the depression, too.

From what you describe, it could be Frontal Lobe epilepsy.

Check out this website:
http://www.epilepsy.com/learn/types-epilepsy-syndromes/frontal-lobe-epilepsy

I think it would be good for you to see an epileptologist, a dr. specializing in seizures. Good luck!
 
That was a very interesting article. I found this part particularly helpful:

Frontal lobe seizures can be caused by abnormal brain tissue, for example from a dysplasia (birth defect in the brain), abnormal blood vessel, old stroke or trauma, rarely tumors, scars from prior infections and several other causes.

I HAVE had MRI's done fairly recently - in Birmingham and at Mayo Clinic - where they know how to do them with the DBS units in place. I have white matter lesions that they think are from small vessel disease and also the wires that are in my brain (front part) have some artifacts around them, which I can't help but wonder if that may be causing problems, too. DBS for dystonia was so new when I had it done that they had very little data to go on and they will still say that they "don't know how it works, but just that it does". So, I am seeing how this could indeed be what is going on. I will make sure and take the MRI reports with me when I go to see the new neurologist.

Thanks for the link.
Ramona
 
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