I've had epilepsy very well controlled for years but since being on the change, I have had feelings like I'm going to have a fit (which in effect makes me anxious) so even though (touch wood) I don't have one I'm anxious that I might so this is affecting my social life, it's a strange feeling like I can actually see myself having this fit (not a nice feeling)!
Anyone had anything like this before?
Advice welcomed
Lesley x
I'm interested by this as I have recently been having these episodes where I feel very hot and bothered with a really hot head and I go into an odd state where I can hear people but don't respond and don't feel like I can talk I don't black out in them but definitely miss stuff and they can last over an hour without me realising afterwards and during I am very tired like I can fall asleep where I am. After one episode in which I kicked and screamed a lot - not sure if this was purely because I was being held down and moved by the people around me but I was taken to hospital and they thought these episodes were not seizures due to the clear eeg but instead psychological due to anxiety. However I am not a great believer in eegs as they have only picked up my epilepsy when I have had a seizure during the eeg and since these episodes reducing because I resist them I have found if I resist them a few hours later I will have a bad complex partial seizure so I don't know if they were warnings or not. I have limited knowledge as I have not seen my specialist about it as when these episodes were happening I was abroad but I'd be interested to know if what I describe sounds like what you are experiencing?
Thank you for your reply, however it doesn't seem like that to me, it just seems more anxiety to me as I don't actually have a fit (if that makes sense)
i haven't had a grand mal for over 20 years but I do twitch but it does pass but I think as I'm going through the change then the anxiety is having a knock on effect on my epilepsy and I think my worse fear is having a grand mal outside
sorry it doesn't seem to be exactly what your going through
Hi lesley, I saw my neuro and told him the same, like I feel this strange sensations (don't know how to describe it). He said that it's a Simple Partial seizure, that were once called an Aura but now have been renamed. Best wishes Karen
Hi karen
what did he suggest to you? More medication
lesley
Hi Lesley
I'm sorry about this negative info, I've been on many drugs and they haven't completely worked for me. I've since found out that simple partial szs are difficult to control, NOT like the other ones.
But everyone is different, a good drug for these is called Clobazam, but if you can get them try Perampanel.
I wish you all the best, incidentally I'm going thru the change too, I'm 57, if you are using HRT your Dr might tell you to wean yourself off it.
Karen x
I panic also when I feel my hand jerk, it's natural.
I heard my brother say "God why my sister" as I can hear but cannot control the seizure.
Good Luck, been 4 years since my last fit. !!
Win
I was wondering what the doctor called it instead of an aura?
Nancy71585
hi lesley
i know the feeling of "having" an attack, and the real feeling of having an attack.does that make sense? 
ill try explain. I have epilepsy and suffer from frequent seizures,and although sometimes i do panik im going to have one, ill hurt myself....ect ect....on a regular day, even though there are plenty warning signs and i no the percentage chance of me having a seizure is high, i stay calm and belive that all will work out ok. im not in control, so theres not much to do. i would like to say it doest effect my social life at all....but that wldnt be true.
i do panik, i do sometimes choose to not go out because of the fear of havingf a seizure, but overall i try have a positive, healthy attitude and say whateva will happen, will happen and life has to continue, let people take me for who i am. good luck with it all.
Hi Sarah
thank you for that advice your right a life of constantly worrying about what might happen doesn't get me anywhere.
and yes what will be will be
thank you 😊
Hi Sarah, I know exactly how you feel, I've had a lifetime of it. Actually I've let epilepsy rule me which I regret but back in the 70s when first diagnosed it had an even bigger stigma with it than now. But still not a lot is known about it. Dr's even admit that they're learning and doing research all the time. There's such an awful lot of different seizures and if you get a combination of them then they're hard to control. Only wish I could accept the way I am instead of forever fighting it. Take care xx
Hi karen
i can totally relate to you fighting against it, as I was diagnosed in the 70s to and I have let it rule my world,
i would love love to just accept who I am or what I've got but I can't see that happening.
lesley x
I've tried so hard in the past to be openly about it but it didn't feel right, when everyone around you is getting on and having a life. Some people still think a seizure is someone jerking and stiff around on the floor, but little do they know that epilepsy comes in all shapes and forms.
This VNS device is my last attempt at obtaining a decent life with some control over what goes on in my head, in another 3 weeks I get it ramped up again. If there comes a time when it improves then perhaps I can reduce my meds, much like a lot of other epileptics have done too. Take care Lesley, x (are you in the uk).
My epilepsy has been pretty much controlled until I started the change and then I've had all these feelings and very much confusion in my head to the point where my head feel so full it's can't cope with much more 😞
I've not heard of the vns but hope it helps you
yes I'm in the UK are you UK based?
lesley x
sorry i hope that didnt come across like... unsympathetic. just telling how i coped. of course everyone deals with things diffrently. And everyone has their up and downs too.
take care.
Sarah
Hi Lesley61388,
I've had epilepsy all my life & I'm now 55. During most of my adult life I thought my
seizures were well controlled as I hardly ever lost consciousness. Over the past few
years I started getting what I recall being warning signs only thankfully without
blacking out. As the frequency increased, the more scared I became until I asked to
be referred back to a Neurologist, having not seen one for years. My symptoms
range from feeling as though I'm about to nod off to sleep then jerking awake again
even when I'm not actually tired (my old warning sign that a Grand Mal was in the
offing) to what I always believed to be butterflies in my stomach. With the advent of the internet I now know that this is a form of seizure & not the butterflies that people without Epilepsy experience. Ignorance was once bliss! The butterflies
sensation with an almost overwhelming feeling that I want to cry lasts a few seconds
to maybe a couple of mins & sometimes comes in waves. It can also feeling like a shivering squeezing feeling (again in my stomach) & I want to clench my teeth. Sometimes my eyes have a brief fluttering sensation or I may be talking & get this weird tiny sneeze accompanied by spluttering my words. Thankfully the last one is only once in a while. Rarely I experience a morning where I can't make sense of anything.
Somehow or other I am able to still carry on working but my memory is getting worse. Thankfully I am able to blame my poor memory on my age but I have been told that the seizures are to blame.
I am currently changing my medication from Phenobarbitone to Lamotrigine, a scary thing to do after all these years but the Pheno are clearly not working for me.
The hardest thing of all is trying to describe your symptoms to someone who has never had Epilepsy. My Neurologist didn't believe it was Epilepsy & even said I'd probably outgrown it & didn't see any point in doing an EEG. I was so infuriated that I dug my heels in, I needed to know. As it turns out I had several seizures during the test, a hollow victory but thank God I didn't go home & throw away my meds............
Hi Bonjovisgirl, you speak my language. I describe my Auras or now called Simple Partial Szs, as waves. I also get a feeling in my stomach like I'm going to tremble. Do you sometimes get a de ja vue in between the waves and the stomach trembles, I also experience a fast heart beat but that could be fear. when explaining to a neuro I sound a bit crazy. Phenobarbitone, (created in 1938) is a drug I was taking about 30 years ago and since found that they're not suitable for this type of szs, but for the grand mal szs, Lamotrigine I've been taking since 1998 and they're an anchor drug. I would suggest that you ask about taking a new drug recently licenced call Perampanel, I wish you look, karen
Thank you Karen. I get de ja vue from time to time, sometimes with the butterflies & sometimes without. Keep forgetting that it's another seizure symptom! I'm on Phenobarbitone because I was having Grand Mal's. Having been diagnosed when I was about 9 back in the 1960's it's only now that I'm in my senior years that I realise (& so does my GP & Neurologist) I was having these other ones too. I'm having to keep a seizure diary at present as I've only just started on the Lamotrigine which I'm taking in tandem with the Phenobarbitone & I can honestly say the diary is something of an eye opener! I always thought my symptoms were pretty much only ever of a morning but have been surprised to find I often get them later in the day too 
Have you asked about your heart rate Karen? Have they ever picked it up during an EEG? Mine is quite the opposite in that it drops really low, down to 38 bps, normally associated with the superfit apparently! Struggling to get that looked into which is surprising given my family's history of heart disease, acquired & congenital.
What with tinnitus & occasional bouts of vertigo there's a right old party going on in my head, just wish I could enjoy it lol!
On the plus side I'm not allowed to drive. To be fair I can't drive anyway but as well as free prescriptions I also have a bus pass
I had the grand mals in my early years, 1970s, then as time went on they changed and now much more random and complex. Yes I've had my heart checked out many times times, just recently had a vagus nerve stimulator fitted which is for drug resistant epilepsy and also has a cardiac feature with it, it's early days yet because it's on the lowest setting and I am having it ramped up next week. So hopefully both of my impairments will improve. The vertigo you get could be your tablets and the cranial fluids, I get it about 30 minutes after taking my drugs, especially the night time ones because there's no food in my stomach, but the bonus is I sleep well. I get the impression from your comments that you feel like you're fighting a losing battle, well my life's just like that and has been for the last 44 years, and now this menopause is unbearable. Take care, Karen
Does feel a real struggle sometimes, to be taken seriously by my GP anyway but think I need to stick to seeing my regular one if it's to do with my seizures. Sounds like our seizure experiences are very similar. I thought mine had changed too & in a way this is true but when I think back all the mini ones were always there, I just didn't realise what they were. The Phenobarbitone brought my Grand Mals under control but as you pointed out they weren't controlling the other types of seizures. Not so sure I want to come off the Pheno if Lamotrigine isn't aimed at Grand Mals. I'm happy to take both providing they each do their job & work in harmony. Vns sounds interesting, certainly hope it works for you, keep us updated with how that's going. Since it has a cardiac feature in it does that mean that they've found a link between seizures & heart rate for some people?
Thankfully I don't get vertigo very often, hardly at all since the first major episode but don't think it's linked to my Epilepsy, think my symptoms are too normal for it to be anything other than vertigo. Always had problems with my ears too. Been on HRT for years, not looking forward to coming off that as it worked so well for me. Got clinic for that next month then neuro in Nov, deep joy, lol!
Let us know how you get on with your next level on the vns. All the best Karen, you're the first person I've been able to speak to that's going through anything like my symptoms, such a relief!