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Alanna

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Hi folks. Well, I'm really new to all this, very stressed out and hoping to hear from others with similar experiences while I wait for some medical answers. So, basically, I had a grand mal (or tonic clonic) seizure a couple of months ago, while I was sleeping. I woke up with a sore, bitten tongue, calves that felt like I'd run a marathon and a headache. I looked up those symptoms on the internet and it was suggested that I'd had a seizure. Oh, well, I thought, I'll mention it to my doctor when I see him next - I've got some chronic medical conditions so I see my gp pretty regularly. My doctor didn't believe me; he actually told me to my face that he didn't think I'd bitten my tongue. My spouse had gotten up early and missed it so I had no witness.

Last Saturday I woke up at 2 am, disoriented and with a sore tongue. My extremely concerned husband told me that I'd had a seizure and described it. Apparently I was seizing on and off for 20 minutes without becoming conscious between. My spouse didn't call an ambulance because I had previously told him not to - I'm a 51 year old woman with PTSD from my last experience with a hospital. I don't want to go in there at 2 in the morning and be treated like I was the last time I needed medical help. Instead, I saw my family doctor on Monday and my hubby described my back arched, eyes rolled up and the bed shaking. My doctor believed him. I'm taking Dilantin and seeing a neurologist next week. I had a CT scan on Thursday.

I'm really scared. My first husband died from a brain tumour. I already had a small optic nerve infarct a few years ago so I'm waiting to see if my seizure was caused by another stroke, a tumour or "just" epilepsy. Medical professionals seem to look at my PTSD diagnosis and consider this is part of my anxiety. Or maybe I'm just imagining things because I'm stressed. Anyway.

So, I know this is long, but if you got through it, my question is regarding my tongue. Two months ago, the first time this happened, my tongue hurt and then was numb for a few days and then gradually got back to normal. This time, it's still numb and it's been a week. Has anyone else ended up with a numb tongue after biting it? Alanna
 
Hi, Alanna and welcome to CWE!
As scary as everything may be right now, try to relax as stress can bring on seizures. Do what works for you to relax: exercise, yoga, listening to calming music, etc. Also avoid other things that might be seizure triggers such as alcohol, caffeine, lack of sleep, lack of regular sleep hours, recreational drugs, etc. Ask your husband to write down exactly what happens during your seizures and how long they last. And instruct him to call an ambulance if your seizures last longer than 5 min or you do not regain consciousness between one seizure and the next. I understand your reluctance to go to the hospital, but seizures like these may require medical intervention as a life-saving measure.

I hope the neurologist you are seeing is one who specializes in seizures (epileptologist). If you are not satisfied with what the neurologist tells you at your upcoming appointment, as to see an epileptologist.

Good luck and keep us posted.
 
!!!welome!!!

Allana,
Welcome to CWE! We are happy to see that you joined to get some advice. You should get the information you are seeking from other members.:clap:
I have had E for 50 years. I feel that if you see a neurologist, they may be able to heelp you, but your best bet is seeing an epileptologist. This is a neurologist who specializes in working with people with E. Many times they will have a more complete knowledge about E!:twocents:

Again WELCOME,
ACsHuman:hugs:
 
Oh, thanks for the welcome. I forgot to say that after I spoke privately to my doctor and he made me aware of how dangerous my seizure was, I told my husband to use his judgement about getting medical care for me, if it happens again. He decided that if a seizure lasts longer than 5 minutes, he'll call an ambulance and meet me at the hospital. He'll make sure they don't restrain me (that's my biggest fear). I have a wonderful spouse. I'm not sure we have epileptologists here, in Canada. I'm feeling pretty lucky to be seeing a specialist within 2 weeks. But, anyway, I'm happy to have found this place. Reassurance is good. I'm trying really hard to relax. Gardening is my stress reliever and I just planted all my squash, pumpkin and zucchini seeds. Alanna
 
I'm from Canada, and we definitely have epileptologists here. As my Location indicates I live in British Columbia, Canada and we have three that I know of; possibly more. I would suggest doing some online research or consulting with your family doctor to find the one closest to you, as often they are located in only major centers. It may entail some traveling to see one but may well be worth it to get a second opinion if need be it you are not happy with the neurologist you will be seeing in a couple of weeks.
 
I also had same stroke as you leaving me eye problem.
I would say normal feel scared nervous for it come on like this..You sound like uk and ruling would be get ambulance any luck you get referral from A&E to nuro may even admit you if you new to it all .you definatly get scan in A&E
All these years I still have nervous panic attacks I know what's happening and being educated in e make it easier to handle..I would think nearly everyone with e on forum still has same feelings but come to terms with it..
Try relax as not a lot you can do until all test been done..I know that easy said.
For what reason did you not want ambulance when husband saw sz
 
Epilepsy Organizations in Canada

Allana,
There are several different organizations across Canada that you could contact about finding an Epileptologist.
Enter this to go to a site that lists these out by where in Canada they are located: www.epilepsyontario.org
You could also Google 'Epilepsy Canada' to find organizations in Canada.
This site will list several organizations in different provinces of Canada!:clap:

Check It Out,
ACsHuman:hugs:
 
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Hi Alanna, welcome to CWE!

my question is regarding my tongue. Two months ago, the first time this happened, my tongue hurt and then was numb for a few days and then gradually got back to normal. This time, it's still numb and it's been a week. Has anyone else ended up with a numb tongue after biting it?
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Sometimes it can take a while for the tongue or gums to heal after a seizure, especially after a prolonged seizure like the one you experienced most recently. For some folks it can take several weeks. Hang in there! And go ahead and mention it to your regular doc or to your neuro, so they know to follow up and keep an eye on the healing process.
 
Alanna,
It sounds like you are really fearful and for good reason. I've bitten my tongue many times but never remember it staying numb. I hope your doctor is able to help you out. I was also on Dilantin and it didn't help my seizures much. I saw an epileptologist and found better medications. Good luck, Jeanne
 
Hello Alanna
welcome to cwe
I don't know why some people come down on neuro's I have the best neuro even though some people think you have to go to a specailist epileptologist my doc was a professor and taught other medical students and I've been seeing him 25 years.

My hubby also has epilepsy just hasn't had a sense his surgery in 1972.
I wasn't so lucky I'm refractory and have had epilepsy since 1963 when I was diagnosed.
 
It looks like I never welcomed you, so a belated welcome from me.
 
Welcome Alanna :)

I'm also in Canada, and an epileptologist is definitely who you want to see if at all possible. My son has epilepsy, diagnosed in Feb., and we have to travel 3 hrs each way to see his Ped Epileptologist but it is so worth it!
 
KatymomtoA said:
I'm also in Canada, and an epileptologist is definitely who you want to see if at all possible. My son has epilepsy, diagnosed in Feb., and we have to travel 3 hrs each way to see his Ped Epileptologist but it is so worth it!
Click to expand...

I agree. I travel 2 hours each way to see mine and an online friend who lives in the interior of my province travels 6-8 hours each way to see one (which involves an expensive night in a hotel), even though there are general neurologists in the various communities much closer to where my friend lives.
 
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