itchy scalp before seizure?

[ramona11]

Still trying to understand the world of seizures... Does it mean I have been officially "diagnosed" with seizures if that listed as a reason for hospitalizations?

Also, as I have had my Topamax reduced, I am having the head shaking episodes numerous times during the day. I am starting to notice things that seem to come with these episodes, but I don't know if they "make sense" and go along with the diagnosis of seizures or not. The things I have noticed before the head shaking starts are: twitching in my hands and arms, itching of my scalp, rubbing of my face with my hands. Afterwards, I feel kind of groggy for a few minutes and still itchy sometimes. I also notice that the fingers on my right hand rub together at times after the episodes. Is there a chance that these things could all be connected?!

I hope to hear early this week about my referral to the new neuro - I called their office and appointments are being made for the end of this month. Not bad for a new patient.

Thanks
Ramona

 

[txtiger]

Ramona,

Welcome to CWE!

As I understand it, seizures are not something you are diagnosed with. They are events in which the electrical signals in the brain "misfire". If a person has more than an isolated seizure, they may be diagnosed with epilepsy. That is something your doctor will determine after testing, such as an EEG and a MRI.

I am not familiar with the itchy scalp, but some of the other things you describe, like twitching in the hands and arms and the rubbing your face with your hand, sound like they could be a complex partial seizure, particularly if the twitching was only on one side of your body and with the grogginess felt afterward.

I may have missed this in an earlier thread, but you said you were having your Topamax reduced. Were you taking it for your seizures or for another condition, like migraines? Reducing your seizure medicine could bring on breakthrough seizures.

These are all things you should discuss with your doctor. I hope you are able to find answers.

 

[Jmedstudent84]

I have a very unsatisfying answer: ask your neurologist for the official diagnosis. You don't even have to ask your neurologist directly. You can probably call the office/the institution your neurologist practices at and they could tell you. I seem to remember you also have dystonia and there was some confusion as to whether your symptoms were caused by your dystonia or epilepsy. That is one of the main reasons I think it is a good idea to check in with your health care team as to your official diagnosis.

I am happy you were able to book a new neurologist!

 

[ramona11]

I was on the Topamax for what had been called "new onset seizures" back in April, but I was having some possible bad side effects from it. I left a message on neurologist's patient portal about these potentially dangerous side effects (rapid breathing, very weak - listed as side effects that could be from acidosis) and then called to try to get in to see him, but none of these messages were returned. So, my internal medicine doctor did some blood work last Thursday and started me on a reduced dosage of the Topamax, while starting the referral to a new neurologist. I have not gotten the results of the blood work yet, but the rapid breathing did get better with the lower dosage, although it seems to have come back again today. I am not nearly as weak as I was then, though.

I have not had a chance to talk to a neurologist about the head shaking episodes, since the "old" one is not returning my calls. My medical issues are quite complex and I think that he is just not sure of what is going on, so does not want to see me again. When the new neurologist's office calls to make the appointment I will tell them about these episodes, in case they want to see me earlier. I am assuming that, if they ARE seizures, they aren't dangerous, right? Just bothersome? My neck is sore from all of the shaking, but I do seem to recover each time otherwise.

Thanks
Ramona

 

[Jmedstudent84]

Hi Ramona,

To answer your question: yes, seizures are a symptom, not a diagnosis. Hopefully your new neurologist will be able to give you more clarity on what your diagnosis actually is. That is a positive step that you have an appointment with a neurologist.

Best Wishes,
Josh

 

[ramona11]

Wow....what a day today was.... I have been having more and more of these head shaking episodes, so I started writing them down so I would know how many I was having. I started when I went to bed and by midmorning there had been about 8 of them. Then, one started at 10:50 and would NOT stop!! It just kept going and going... I hate ER's and ambulances, but was to the point of calling an ambulance - just needed to know from my doc which hospital to go to, but I could not get a call back. I tried taking 10 mg Valium, which helps with my dystonia, and that had no effect. I tried turning my DBS units off, back on, changing the settings - all had no effect. My husband came home and we could not decide which hospital, so I took an Ativan. At that point I was at least so goofy that I didn't care as much about the shaking, although it sure was uncomfortable. It finally stopped after five hours.

I got a phone call from the new neuro's office after that, calling to make an appointment for next Thursday. I told her what happened and she said that if it happened again to go on to the ER and she told me which one to go to. I hope it does NOT happen again....

I suspect this is due to me cutting back on the Topamax, but I don't want to play with that too much. Now that I have started the reduced dosage, I don't want to mess with it.

This is going to be a tough call, because any activity like this can TRIGGER my dystonia to kick in, so it is going to be hard to tell which it is in the beginning. It sure did not respond to any of the normal dystonia treatments I have used in the past, though...

Not sure there are any questions here - just a rough day. Neck is sore from all the thrashing about...

Ramona