Advice on what to tell my doctor about nocturnal Seizures

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Hi, I think I have had nocturnal Seizures for about a year but have been very unsure. As I live on my own I am worried that I have no one to back me up.

I was going to tell the doctor that I think/ Know I have nocturnal Seizures because;

They make me Extremely Tired when I wake up.
My legs and even my wrists ache
I get headaches without the day and I wake up with heavy eyes
I can wake up suddenly in the night and sometimes have very vivid dreams
I sometimes get flashes behind my eyes

They don't cause me any physical marks or blood.

I know I have had one seizure (woken me up and I was conscious) that I was aware of but the rest I have been sleeping

I am just worried she Will not take me seriously, This has been going on for atleast a year and I need to get it sorted.
 
I agree it is very difficult to describe something that happens in your sleep. Start by doing what you just did; that is, write down everything that is atypical (ie. that you think suggests a seizure) compared to your usual good night of sleep. During the afternoon or evening hours prior to a bad night, do you have any unusual sensations? Are there any triggers for a bad night? Those times that you wake during a bad night, exactly what do you experience - do you recall experiencing particular movements or sensations? In particular what happened during the seizure when you were awake?
These aren't questions you need to answer; just giving you ideas of things to write down to tell your doctor about.
Be prepared to discuss any other medical conditions you have, medications you take, family history as it pertains to epilepsy or neurological disorders in general.
If you feel you are not getting answers from your primary doctor, ask for a referral to a seizures specialist, as they are the best ones to determine if symptoms are consistent with seizures or not. An EEG may also be helpful, especially one that is ambulatory so you can wear it at home and overnight.
 
thankyou I will look into those.

I've also tried to video my seizures on my phone but you can't see much. I cough and make weird noises. and seem to touch my face with my left hand (which is probably why only my left hand aches).
 
I don't know if it is the same where you are from, but where I am from Wiltshire UK. They just passed a law saying that Nerologists cannot view footage of a home recorded seizure. I tried to give my Nerologist one not long ago and he said he was no longer allowed.
 
Yes UK, but I have not got a neurologist yet, I just want it to help explain it to my GP first, so that i can get to the bottom of it and get a neoro appointment
 
Thats fine, an EEG would probably be rhe best way to go.

Difficult sleeping with them though. I hate it! X
 
Why can a neurologist not view a home video??? For those that live alone and have night seizures, that is their only hope of showing a doctor what happens!
 
I have no idea, my nerologist always used to ask me to get recordings. Then when we finally did he said he wasn't allowed to view them anymore.
Silly isn't it?
They put you in clinics where all the staff have cameras, like big brother for epileptics.
I was there at the begining of the year.
 
If my doctors nice and believes me just from me saying I'm exhausted and cannot work a full day, hopefully I won't need to show any "evidence".

its just freaks me out having to go to the doctors so it would help if they believed me first, because otherwise I can see myself leaving and ignoring it again.
 
They cannot completely discount what you are saying, you could always have another person watch it and go with you. So someone else has seen?
 
Maybe, im not good at communicating with people, So I'd rather go by myself. It would just make it too complicated and my mum would stress me out. I get stressed out by the doctor enough as it is.

I will go and see what they say and if she does not do anything, go back with my mum
 
If it looks as though the doctor isn't going to do anything then you could always go to a different one.
You should be able to demand tests, just keep calm and take your time to explain everything. Write it all down beforehand if it helps.
 
i've been trying but my computer gives off a horrible noise and my phone has the flash light on. If It doesnt work, i'm just going to explain things and write things down, that will probably be easier rather than having trouble sleeping.
 
Went to the doctor today, still have not got that much further. He wants to take bloods and maybe look into a sleep study. He says that nocturnal seizures cannot happen at night unless accompanied by day time problems!!!

I am unsure whether he believes me or not. I wrote everything down and told him how tired I was so fingers crossed for the sleep study, how ever stressful it will be. It is better safe than sorry.
 
Your doctor is incorrect. I have had nocturnal seizures for over 20 years and never have them during the day, only when I sleep. A sleep disorder such as sleep apnea or night terrors may possibly induce seizures but if so, medication can help alleviate that. I have sleep apnea and my neuro want's me to wear a cpap when I sleep but I can't sleep with it on. Usually felt worse the next morning than if I had been having seizures through the night. But at any rate, I would definitely get a neuro and have him/her run the proper tests to find out or at least get another GP, cause your current GP is ill informed.
 
I like my current doctor and I don't think she is refusing me the sleep tests, just getting blood tests first. Shes probably not an expert in that area. I think shes assuming i should have some symptoms during the day like absences etc. Which i might have done but its so confusing i could not be sure of this. Shes not going to leave me exhausted forever so once I go back and say I am still tired, she will refer me for a sleep study! NHS takes for ever because they have guidelines to follow to save money.
 
I agree with k35k35k35 -- it's very possible to have nocturnal seizures without having daytime symptoms as well. So the sooner you can be referred to a specialist who has more experience with epilepsy, the better.

At least one of the symptoms you describe -- touching your face -- can be a form of Complex Partial seizure. I hope your GP can get you an overnight sleep study soon. That would definitely help in getting diagnosis.
 
Ahh doctor not read up on this subject well. Said that touching your face is normal!!! But she is correct about myoclonic jerks, they are normal to have before sleeping. I am a bit frustrated but I know she is going by the book by doing bloods first.
 
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