Margaret

Seizures

13 posts in this topic

Hi Everyone,

 

I need help......again. I have been to the medical files but can not find anything about Sclero/UCTD and seizures. Does anyone know if there is a connection? We *think* Gareth had his first seizure Friday morning. He finished the Prednisone Jan 11th. Levaquin can cause seizures but he finished that Dec 28th. Of course, by the time we got to the ER, all his blood work and EKG was normal. On Mon., he'll see his primary care physician and then we need to find a neurologist.

 

The good side of all the antibiotics/prednisone in Dec...his sed rate is down to 25!!!

 

Take care, Everyone.

Margaret

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Margaret,

 

I'm really sorry to hear this. Whether or not this event was a seizure, it's very scary.

What symptoms did you notice, what did Gareth tell you or indicate that made you think it might have been a seizure? Seizures can happen with the bloodwork and EKG being normal. Of couse, some meds can cause seizures. Remind the doctor about the levaquin (sometimes they don't remember everything).

 

I started having seizures at the age of 48. My sclero had not been diagnosed yet, but I had the raynauds, esophagus problems, skin tightening. As far as any doctors have told me, the seizures cannot be attributed to the scleroderma. In my case the doctors. determined that they were part of another autoimmune disease that I have.

 

I AM happy to hear that Gareth's sed rate is down. Please let us know about Gareth's

situation. Let me know if I can try to be of more help.

 

emmie

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Does Gareth have a fever? Sometimes if it really high that can cause a seizure too. Well keep us updated, I have never heard of seizures and sclero being related. I thin you should make sure you mention this to the doctor. Which I am sure that you did. Take care, Sam


Sam

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<<What symptoms did you notice, what did Gareth tell you or indicate that made you think it might have been a seizure? >>

 

Hi Emmie ,

 

Gareth was giving his Dad a hug 'goodbye' before he went off to work. I didn't see it happen but Ter said he was hugging Gareth and Gareth just fell through his arms on to the floor. I heard Ter keep saying "are you Ok?" and I came around to see what was going on. Gareth was on the floor, eyes wide open, and a dazed look on his face. He finally stood up and looked around the room like he had no clue where he was or what had happened. Finally, he said 'I'm fine.' It all lasted 10-15 seconds, but was very frightening because he acted like he didn't hear us talking to him. Gareth has suffered from Orthostatic hypotension for years....he stands up and his blood pressure drops significantly making him dizzy. He knows to stand slowly and to grab on to something if the dizziness is really bad. This was not dizziness.....just a complete drop down and total unawareness. There is nobody in our families who have seizures......'course, no one has sclero either.....so I have no real 'clue' what a seizure would look like.

 

Have a good day,

Margaret

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Margaret,

 

There are seizures like that, although it could be a lot of other things as well. I would call the rheumatologist Mon. morning. See what he/she has to say. If he/she doesn't suggest it, I would ask for a referral if you need one or a recommendation for a good neurologist.

 

Good Luck with all of this. The unknown is so hard.....

 

emmie

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Back in October I was rushed to the ER in an ambulance because I started having seizures. I was told by my Neurologist that if the Sclero caused the seizure it would be through another auto immune disorder like Vasculitis. They thought I had developed that but it was determined that my high blood pressure is what caused my seizures. As we all know high blood pressure runs with the territory.

 

I do hope you are able to find out what's going on. Seizures are really scary.

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Hi Margaret,

I'm so sorry that Gareth had this frightening event happen. Just a thought, seizures can be part of lupus and if he has an overlap of symptoms they may want to test him for that as well. Hope that was his first and last.

Hugs, Piper

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<<I was told by my Neurologist that if the Sclero caused the seizure it would be through another auto immune disorder like Vasculitis. They thought I had developed that but it was determined that my high blood pressure is what caused my seizures. >>

 

Hi Everyone,

 

Stacey....Gareth's rheumatologist told me the same. Sclero doesn't cause seizures, but UCTD can. I really don't understand the *separation* of the two. G's problem isn't high blood pressure but Orthostatic Hypotension.....his blood pressure drops so low when standing up that he is dizzy for a few seconds.

 

<<seizures can be part of lupus and if he has an overlap of symptoms they may want to test him for that as well. >>

 

Piper.....he was tested for Lupus and the blood work came back negative. That was 15 months ago, though.

 

I had him in to his primary care physician today and he wants him to have an EEG on Thurs. Perhaps that will show something. I also found out today that his EKG done last Friday "suggests right ventricular conduction delay". His primary care physician didn't seem too concerned about it. From what I read, it could be caused by fibrosis in a node due to SSc. Who knows?!?!?

 

Take care, Everyone.

Margaret

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Margaret:

 

That sounds more like a mini stroke or transient stroke. Staring, eyes wide open like that. I would check with the doctor, but it doesn't sound like a seizure.


Tru

 

It is what it is...........

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Margaret (and Tru),

 

All seizures are not what used to be called "grand mals". There are types of seizures called partial and complex partial. Google epilepsy (I really doubt that's the case for Gareth) and you will find good explanations of the different type of seizures.

 

Also, "abnormal" eegs are not necessary for an event to be a seizure. I'll sure be thinking of you and Gareth. Please keep us posted on what you find out.

 

xoxo emmie

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Hi Everyone,

 

Gareth had his EEG yesterday and today I got a call from his primary care physician that it was 'abnormal'. He's got an appt with a neurologist in two weeks for us to

discuss 'absence seizures'. Are we having fun, yet?!?!?

 

Take care, Everyone.

Margaret

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Margaret,

 

I'm sorry to hear of this latest development. However, getting the results of an "abnormal" eeg may turn out to be helpful in the sense that you are getting in to see a neuro sooner rather than later. It also means that treatment can start sooner.

 

If I'm not mistaken 'absence seizures' are what used to be called petit mal. I think today they are also called partial and depending on the symptoms of Gareth's symptoms, they may be called partial complex seizures.

 

I'm sure you'll be googling....be careful of less than reputable sites (we always have to be aware of that, right?) and try not to get ahead of yourself. I know, easier said than done. Take care and be sure to let Gareth know that he is not alone with this.

Please be sure to keep us posted.

 

xoxo emmie

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