Should I go to hospital or the doctor?

[Wobblez]

onder:I can't get my EEG till the 21st April and my appointment with the Neuro till the 8th of June. In the meantime my condition is worsening and I think i'm having partial seizures, at least once or twice a day. They are only small and apart from my hands shaking and the colour draining from my face, there aren't many signs that are visible to others, I just feel absolutely awful. Do you think I should go and sit in ER or wait till my appointment with my GP on wednesday? I've been like this for days now. I should add as this is a recent reoccurance of childhood epilepsy (we think) i'm not on any medication yet. I'm 26 and have had a few tonic clonic/pseudo seizures in hospital.

 

[kiwisuccess]

onder:I can't get my EEG till the 21st April and my appointment with the Neuro till the 8th of June. In the meantime my condition is worsening and I think i'm having partial seizures, at least once or twice a day. They are only small and apart from my hands shaking and the colour draining from my face, there aren't many signs that are visible to others, I just feel absolutely awful. Do you think I should go and sit in ER or wait till my appointment with my GP on wednesday? I've been like this for days now. I should add as this is a recent reoccurance of childhood epilepsy (we think) i'm not on any medication yet. I'm 26 and have had a few tonic clonic/pseudo seizures in hospital.

That seems crazy you have to wait so long for an EEG !! Its just a scan.
If you are this bad every day I would just go to ER. At least you get to see someone then.
I haven't seen a Neurologist for 18 months. There is just a lack of them.

 

[Wobblez]

Kiwisuccess: 18months?!!? That's terrible! Is your condtion stable? I'm going back to the hospital tomorrow as the doctor who treated me did ask me to come back if I was still having issues. I think as soon as you say "epilepsy" GP's refer to you to the ER anyway so hopefully i'm doing the right thing. I wish it wasn't so vague and tricky to show other people. Having said that though I have been going white and my speech is slurred again, I just kinda hope these things happen while i'm there!

 

[JacobsMom]

Wobblez
When my son has the mild seizures where he doesnt have control over what he is doing and does this lip smacking and hand thing his speech is as if he is severly mentally handicapped and loses color in his facce as well. If he goes off his meds he can have dozens of these a day. Good Luck with getting the answers

 

[alivenwell]

It's a tough decision. This could be something other than epilepsy like hypertension, diabetes, hypoglycemia, or something that just seems to be manifesting itself. They can at least perform a complete blood test to rule out liver malfunctioning, anemia, and a host of other things.

In the meantime, I'd suggest completely laying off gluten, casein, soy and soy products such as tofu, msg, sorbitol, malitol, caffeine, preservatives and any other artificial sweeteners. For many people with seizures, these ingredients can be seizure triggers. Keep a written log of what you eat, drink and your energy levels. Magnesium, according to some in here, can really help seizure control, but I'm not an expert on that one. Numerous foods are high in this mineral. I do follow the strict diet.
Above all, this is a catch 22. Worry can lead to seizures. Seizures reinforce worry. And the vicious cycle repeats itself. If your energy levels are high and your anxiety is high, go try to work off the excess adrenaline. Try a good run around the block. You'll sleep better. Foods such as peanut butter (presuming you're not allergic to it) can be a relaxing thing, especially 3 hours prior to bedtime.

 

[Wobblez]

Hi Alivenwell,

Thank you for your tips. I would LOVE to go for a run but i'm just too dizzy to do any more than walking. I walk my dog almost every day and if i'm dizzy, I drag my mum along and take it slowly but I still attempt it. I am a bit anxious but i'm making some good lifestyle changes to try and counteract that and I let off some steam by talking to a counsellor who really helps.

I just need to get through the next 2 months until I see the neurologist. Hopefully he will be more helpful than the last. I'd love to think this isn't epilepsy but whatever it is, I need some help managing it. Why do doctors say "You really don't want me to diagnose you with E, it will really affect your life". Oh right so you think because you don't label it my symptoms will magically go away? What's the difference? It's still affecting my uni work, my life and my health! I still can't drive or exercise properly! I still have a huge headache and lots of episodes regardless of what we call it....sigh.

 

[Endless]

Hi Alivenwell,

I'd love to think this isn't epilepsy but whatever it is, I need some help managing it. Why do doctors say "You really don't want me to diagnose you with E, it will really affect your life". Oh right so you think because you don't label it my symptoms will magically go away? What's the difference? It's still affecting my uni work, my life and my health! I still can't drive or exercise properly! I still have a huge headache and lots of episodes regardless of what we call it....sigh.

I think I can shed some light on what your doctor said. Most other alternative diagnoses can be easily fixed... hypoglycemia, a cardiac problem, sleep disorder, etc. Epilepsy, much harder, and the drugs can be as bad as the seizures. Trust me, if there is *almost* any other diagnosis, you'd want to take it instead. Your doc should be testing everything under the sun to rule any other possible cause out before settling on epilepsy.

But, that's from me. I have an alternative diagnosis - a neurological disease called Intracranial Hypertension. That's just as bad to fix/manage as epilepsy. The drugs are horrible and neurosurgery is the only other alternative/, and the surgery only has a 50% success rate. So I'm not real happy about my alternative diagnosis, either. But if we can get teh IIH under control, my seizures may go away, too. That would be the best. But we won't know if it's causing the seizures until the fluid pressure in my head is under contorl.

 

[Wobblez]

Thanks Endless, I really hope they fix you up soon, it must be difficult to live with.

I totally understand where you are coming from and the last thing I want is to be medicated for life but I'm more trying to say that i'm still dealing with the symptoms, regardless of if it's diagnosed or not. And i'm happy to look into lifestyle changes and natural therapies, I guess want some help managing it but I know I need to be patient and it could be worse.