Epilepsy/Seizure Fears
Posted , 6 users are following.
Hi, I am hoping that people can hear my story and help me which I am really struggling to describe so please bear with me. Basically ever since I have know I have been suffering with this fear which has plagued me for most of my life. I am 37 and for the last five years things have gone progressively worse for me. In 2012 I started getting these fairly frequent episodes of deja vu which could be related to dreams/flashbacks of my life which at times could happen on a daily basis and numerous times. Accompanied by this I had on numerous occasions these unexpected feelings of fear and unreality like dreamlike situations where i started to experience the rising stomach feeling and pressure up into my head. I googled this which sent me into panic and all my symptoms identically match temporal lobe seizures which can spread from partial to generalised. At this time my anxiety levels are through the roof with googling constantly and me thinking their is no way anxiety can create these real physical symptoms.
This could happen anywhere at anytime.
Moving forward It got to the point in 2014 I went to be referred by my GP to see a neurologist who sent me for an EEG and MRI scans which came back completely normal and they were happy to rule out seizures/epilepsy which in one way I was relieved to hear it all came back normal but it didnt relax my mind as I have read so many things online and so many websites/forums stating that scans and tests are usually normal and you can still have seizures/epilepsy. Anyhow things slightly improved and moving forwards to 2017 and over the last 6 weeks things have returned and much worse and the symptoms have intensified which has sent me into right panic that this is it the seizures are going to start for definite now. I have been the doctor who has put me on an anxiety medication but I have convinced myself I have temporal lobe epilepsy and I am scared so much as its my biggest fear. All the epilepsy websites are identical to my symptoms.
I am going to ask to see if I can go for tests again as their is no way anxiety can create these really weird seizure symptoms.
I dont no what to do I cant live like this living in fear of epilepsy.
P.S. If anyone can help me or explain what they think this is or can advise me.
Any help would be much appreciated.
Thanks
Jonny
1 like, 37 replies
jemma83362 jonathan99185
Posted
Hi Jonny.
i understand your fears and I've had crippling anxiety for as long as I can remember. However, a gigantic panic attack in April 2016 left me with many physical symptoms and more that came & went. I had so many things wrong, that I convinced myself that there was something physical. So, like you, I would be frantically searching various ailments that I had, trying to look for an answer, because it felt like nobody else wanted to. This then lead to morse anxiety, that lead to more ailments. Every test I had, it came back negative. Like you, I was happy nothing was wrong, but angry that I didn't have an answer. Fast forward to August 2016, I had my first seizure, which was a tonic clonic (also known as generalised) seizure. This sent me into even more panic and at one point, I was convinced there was a tumour in my brain that caused it. I then had another few seizures and was diagnosed with epilepsy (to my relief (that I finally had an answer for something) but that also made me quite depressed (forcing my drs to increase my anti-depressant med)). Like you, I have flashbacks etc. to when I first got my issues, or one of the times I was rushed to hospital, or something like that. I explained this to my psych dr, and he told me that it is to do with my brain bringing awareness of the incidents back to my body, so that I never end up in that situation again. Admittedly, they do sometimes scare me, but a lot of the time, I have to just let them take their course, as I know they're happening for a reason. I see a therapist and they've helped me sooooooooo much. Maybe go to your gp and ask them to refer
you to a psychiatrist. In the mean time, talk to people you trust, such as a significant other or family member.
I hope this helps and hope you get sorted soon (I know it doesn't seem it, but they will be sorted)
Jemma
jonathan99185 jemma83362
Posted
jemma83362 jonathan99185
Posted
No, I'm sure you'll be ok. I didn't mean to scare you. I'm not a doctor, but I don't personally think that you have epilepsy, because the majority of people have 'flashbacks' or whatever and it never turns into anything. Maybe go to your gp and discuss your findings???
Again, I apologise for scaring you, I didn't mean to :-(
Regards,
Jemma
jonathan99185 jemma83362
Posted
Hi Jemma it's ok I just panicking as you have just developed seizures for no apparent reason but your symptoms match mine so I'm thinking I will start experiencing them. I wish I could be told from doctor that anxiety can cause these weird symptoms.
jemma83362 jonathan99185
Posted
Ive been told that the name for anxiety causing strange symptoms w/o an obvious medical cause is conversion disorder. I have been told multiple times that the conversion disorder has no chance in being connected to my epilepsy. Apparently it's a coincidence that I was lucky enough to be the chosen one to have both problems. I've been told by my epilepsy drs that there is not any known cause as to why people develop epilepsy. Is there a chance you can see a gp and tell them your idea/worry and tell them that you won't allow them to act like they're doing something, but then they don't do anything. (That probably doesn't make sense. Sorry) I think (and hope) you'll be ok. Please keep me informed
jonathan99185 jemma83362
Posted
I spoke with the doctor and they are going to refer me to see a neurologist to see if they can investigate further but their is a 3 month waiting list and I am scared that I am heading for epilepsy. I dont know if this is TLE or Anxiety or something else. I am so scared its Epilepsy.
jemma83362 jonathan99185
Posted
Hi,
i don't think that it is epilepsy because I had flashbacks before my TCS, but they didn't get anymore intense, they've just stayed exactly the same. From the aftermath symptoms you describe, I'm not convinced you'll end up with epilepsy. That's good you spoke to the dr and that they referred you. That's a shame there's a 3 mth waiting list tho. Did you explain to the dr your fears? I'm sure you'll be ok, just keep talking to people you trust :-)
jonathan99185 jemma83362
Posted
Hi Jemma I wouldn't say my flashbacks are more intense they are pretty much the same everytime it's just I have had this feeling daily for the last few months but it's these intense fear that washes over me which stops me in my tracks and my vision goes hazy and dreamlike and I get the abdominal pain and sickness feeling. Plus get the deja vu feeling which leaves me tired. I have had this on and off for years so I am struggling to see how this can be anxiety and not TLE. I have to wait 3 months for my appointment to live in fear of having a tonic clonic seizure at any point. I can't live like this waiting for one of these episodes to turn into something major. Also I am fully aware of these episodes when their happening but can't talk because I am in a state of panic thinking here we go I am going to collapse into a fit. I keep telling myself if it was epilepsy I would of had a full blown seizure by now but I read that's not the case as it can take years and years to progress. I have convinced myself it's epilepsy. I am so scared
jemma83362 jonathan99185
Posted
Right, so, I have similar feelings to that. [u]BUT[/u] my drs etc have told me this: it is extremely rare to have both types of fits. It is either TC OR the deja vu ones. Based on this (and the fact that you get abdo pain & sickness) I don't think you have anything to worry about. Please trust the drs when they say they don't think you have it. Also remember that if they thought it was TLE, they would have made it and urgent referral like they did for me. That's brilliant, keep telling yourself that until you 100% believe it. Yes, it can takes yrs to progress (I didn't start having fits until I was 15), but they don't often start w/ one seizure & progress to another. If you do end up having a TC seizure (which you most likely won't), there's nothing to be afraid of. There's nothing to be afraid of in any case. The thought that panics you and makes you think you'll drop down and seize is probably the cause of the episodes. The only issue with convincing yourself it's epilepsy is that you'll have to tell DVLA and they could revoke your driving license (if you have one). I can't speak for all epileptics, however, I have heard that not many people have warnings prior to a TC seizure. Please don't be scared and please keep talking to people
jonathan99185 jemma83362
Posted
Hi Jemma thank you very much for the informative response. I can't decide what it is however I have had this years and I am now 36. Between 2014 and say 2 months ago things had eased off but their back with a vengeance and worse than ever. Sometimes the deja vu makes me wake up from sleep in a panic. But I am constantly thinking of these feelings and waiting for it to happen so don't know if I can bring them on myself. I don't know whether anxiety can cause all these? Do you think this is likely to progress into a full seizure or do we think that it will just disappear when my anxiety dies down? You say no warning before a tonic clonic seizure but surely you must feel something like fainting or vision goes?
jemma83362 jonathan99185
Posted
Hi, you're welcome. By the sounds of it, not even the drs can decide what it is. I think that, as you have had it for years, it won't get any worse. Yes, I think anxiety can bring on all sorts of things, as I have experienced many horrible problems as a result of my anxiety, such as stridor, flashbacks and unbearable pains (to name but a few). I don't think it will progress to TCS, and I do think that it will reduce if your anxiety reduces. Yeah, I have no warning. Take my seizure that I had a couple of weeks ago. I was getting ready to go out with my mum. I just turned around to go out of the bathroom and I just collapsed and had a seizure lasting a couple of minutes. I have never had a warning. Not even feeling faint or my vision going. I remember nothing and there are a couple of secs before the seizure and about 15-20 mins after that I have no idea what happened.
cherelle1392 jonathan99185
Posted
hi Johnny, this post is so old but hope you may see it anyway as I am in a desperate state.
did you ever get to the bottom of this?
thanks so much!