New member - simple partial seizures worries.

[louloumel]

Hi all. I was diagnosed just over a year and a half ago with simple partial seizures. I had been having them for about 2 years before mentioning my "funny turns" to the doctor.
I was really shaken by being told I had epilepsy - basically because my understanding of it was so limited, and I'm ashamed to admit that I was also upset at having something/a label.
I have since got over that and have been back driving again from last October. That really helped me feel more upbeat as I hated not being able to drive after having done so for over 20 years!
Unfortunately I have recently started to have new, odd sensations that I am really worried about. I'm not sure if they are to do with my epilepsy or not as I can't find any info that points to it directly - but I am probably lying to myself about this as I'm so scared of not being "fixed" and (stupidly) of losing my driving licence again. There is also an irrational fear that during my initial scans/diagnosis they missed something which has now got worse i.e. a tumour.
I guess I joined is because I feel the need to reach out, but I'm not ready to go back to my epilepsy specialist and all that that might start.

 

[Fedup]

louloumel

Welcome to C.W.E. You know you need to look after yourself so you know you have to see your doctor. You have to look after yourself if not you epilepsy could get out of control by going you might be able to nip the problem in the bud. Then again it might just be a flu/virus anything so how will you find out anyway is anything scarier than when you found out you had epilepsy. Your not stupid just human.

 

[louloumel]

Thanks Fedup. I know I must sound ridiculous for not thinking that the best thing I can do is go back and see my doctor. It's just I feel that since there was no cause found to explain why I developed epilepsy, then whatever I say will automatically be attributed to being further seizure activity and that will be a setback. I never used to feel ill and now I worry about every little sensation. Sometimes I wonder if I am attributing something insignificant to being seizure activity when it could just be being run down or something, just as you say.
Does anybody else ever get the sensation of pressure on both sides of their head and then like a fuzziness in their ears - not a noise more of a feeling?

 

[Fedup]

louloumel

Yes I get that feeling sometimes I think only it feels like my head is in a vice most of the time and you are not ridiculous just normal. Whatever you say cannot be attributed to further seizure activity, but it can be attributed to something, its ok to feel worried and scared. Happens to me as well.

 

[Nakamova]

Hi louloumel, welcome to CWE!

As Fedup says, better safe than sorry -- odd sensations are worth getting checked out. If you're not ready to see the doc yet (and I completely understand if that's the case), try keeping a diary where you track when the odd sensations occur. If they are increasing in frequency or duration, then that's a sign that a doctor's visit may be a good idea. The diary has the added benefit that it may indicate a pattern or particular triggers for the sensations.

They might be seizure- or med-related, but they could also be a response to a passing illness, allergies, change in season, fatigue, etc. Sometimes our meds make us more vulnerable to things like dehydration, so make sure you are getting plenty of water to drink.

Best,
Nakamova