Posted , 5 users are following.
I am getting a lot of waves of fear from nowhere which makes my vision go funny. I also get deja vu quite a lot again out of the blue. I have been to see a neurologist who says he does not think it is epilepsy at all but I keep reading things on google and on youtube of people with temporal lobe epilepsy explaining my symptoms exactly.
In fact a regular seizure sufferer put on you tube these exact words "Describing Simple Partial Seizures can be difficult. Deja Vu, sudden unexplained fear, anxiety, and more is exactly what temporal lobe seizures are"
I am worried sick do I have anxiety or seizures who do I believe the epilepsy forums/youtube? Or do I believe a neurologist?
Please help me please I am so worried sick???
0 likes, 58 replies
Philly89 jonathan99185
Posted
I have died 50 times according to Google and other researching I've done on the internet lol. BELIEVE THE NERUOLOGIST.
I'll give u my personal example: I had multiple swollen lymph nodes in my head/beck area that popped up for no obvious reason. After googling I freaked out bc everything I had pointed to Lymphoma. It said unexplained lymph node swelling, and specifically lymph nodes that are hard, painless, immovable, and do not disappear within a few weeks are all signs of Lymphoma - and that's exactly what I had.
Well guess what, I went to an Oncologist and had an ultra sound and an MRI done, and they're all perfectly normal nodes - no lymphoma. The oncologist told me that contrary to what the internet says, the only REAL red flag for Lymphoma is the size of the swollen node. Hard, painless, immovable - none of that really matters. It's now been months since all that and my nodes are disappearing thankfully.
So long story short - listen to your doctors, NOT the internet. I had myself terrified for weeks over what I read online and it turned out to be nothing.
jonathan99185 Philly89
Posted
Hi Philly I get this but these are people with seizures who are describing my exact symptoms? They all say that it may not be anxiety it could be temporal lobe epilepsy. I am scared
juffy28325 jonathan99185
Posted
Why you are reading it??
You are still anxious and this is the reason why it still keeps on you! If you don't know about that epilepsy, everything might be different! Try to find out how everything started!!! And think about it! What was the trigger for you to start reading about epilepsy?!
I know that many symptoms are similar, but it doesn't mean that you have this rare kind of epilepsy! Check anxiety symptoms (there are more than 200 of it) and all of you describe fits to anxiety or panic attack! You are too focused on your symptoms and this is the reason why it always happening to you! You have severe anxiety and it is obvious!!!
Do you have a therapist??
You should focuse on how to get rid of your health anxiety first!
jonathan99185 juffy28325
Posted
Hi Juffy I really appreciate your message but I cannot get any control over this. It is taking over my life. I for some reason have always had a fear over epilepsy and seizures and I dont know where it has come from. I think it is because of the strange symptoms and how drastic seizures look when a person has it.
I have had these symptoms for over 15 years on and off but they have become much worse over last few years and the more I read the more I am convinced I have it despite what neuros are saying. The reason why is because people that are on the epilepsy forums describe my symptoms exactly and that is what concerns me.
Epilepsy is the worst thing in the world
juffy28325 jonathan99185
Posted
I will be very bad on you now because I know how you feel! I have enormous phobia of epilepsy and I suffer from severe health anxiety since my childhood! When I was 10 I thought that I have heart disease. When I was 14 I thought that I have brain tumor. (My grandpa died of brain tumor and epilepsy) and now I'm 20 and my anxiety makes me scared of epilepsy so much! Everything starts from irrational fear of seizures and I started to Google about epilepsy! Guess what! I have found temporal lobe epilepsy! My anxiety caused my soo many symptoms and I was crying like a baby everyday!!!! I have adrenalin rush, weird vision, derealusation, depersonalisation, deja vu, sparkles in vision and many many scary symptoms!!! Doctors told me that I'm OK! But Ihave been still anxious, BUT I have decided to change my life! I'm not victim of my anxiety!!! It takes time, but I am patient and fight hard to get my life back!
Do you want to continue with life in fear of something which is not real?? With Fake symptoms?? You make yourself a victim!!!!
Fight your anxiety and study more about it!!!
jonathan99185 juffy28325
Posted
juffy you have done amazing that you are getting thru this. thank you for the kind words but i am struggling. tonight i am having a terrible anxiety night loads of these seizure feelings i am scared i have been mis diagnosed by the neurologist. the latest symptom is ringing occasionally in my ears. what is going on? how can anxiety create these weird symptoms? most people i hear who have anxiety or panic attacks have weird pains in chest and breathing issues mine are completely different mine are all brain, eyes or ears related.
im not convinced it is anxiety its too real
Philly89 jonathan99185
Posted
I understand why you're worried, people are writing online that the exact symptoms you have are actually epilepsy. And that is a cause for concern, but the next step would be to go to the Dr and have tests done, and you've done that and they said you're fine. So now it is time to stop listening to Google.
I can't explain why people are saying they have the same symptoms as you with epilepsy, but as I said above - the EXACT same thing happened with me and my fear of Lymphoma. Everything I was reading online about Lympoma was exactly what I was experiencing, and yet here I am - tested and normal.
Did you know that the symptoms of a heart attack are almost identical with symptoms of a anxiety/panic attack? Numbness/pain in the arms, sweating, trouble breathing, chest pain, chest tightness, dizziness, fainting... All of these symptoms are symptoms of a heart attack AND also symptoms of a panic attack. So if you went online and looked up those symptoms and ppl said that's symptoms of a heart attack, they are not wrong, it could be. But it could also just be a panic attack bc the symptoms are so similar. So until you're examined by a Dr, nobody can tell you for sure. You have done that and been examined and now need to accept the results.
Think about it this way - if you start focusing on your anxiety, see a therapist and start coping with it, whats the worst that's gonna happen? You don't feel better and still have the symptoms, so then you go back to the Dr and tell them that and they will examine you again. But if all of that does help, you will calm down and realize you don't have epilepsy. So really you have nothing to lose.
Philly89
Posted
Also, regarding your comment to juffy,
"most people i hear who have anxiety or panic attacks have weird pains in chest and breathing issues mine are completely different mine are all brain, eyes or ears related."
Yes that is true, those are common symptoms but those r not the only symptoms of anxiety... My best friend gets aura migraines from anxiety, the first time it happened she went to the ER. She said all she could see was white spots, she couldn't even walk on her own bc she couldn't see. That's a pretty frightening and severe physical symptom to experience, wouldn't you say? And yet it's just caused by anxiety.
I've also had phases with dizziness, for a period of 3 or 4 MONTHS I felt dizzy every single day, it was like that feeling of being a boat, alllll day long. It made me afraid to drive sometimes. I thought I had vertigo or some brain issue like a Tumor even maybe, but nope - just anxiety!
Chest pains and breathing are just the tip of the iceberg of anxiety symptoms.
jonathan99185 Philly89
Posted
Thank you for the message. I am really struggling today it feels like my head is all lightheaded and spaced out to. When I stand up from sitting my vision goes funny for a few seconds and I feel dizzy as well as find it harder to breathe.
The darker vision and panic feeling is happening lots today and little mini deja vus a lot this morning. I am worried sick today please put my mind at ease?
Also how do you know the difference between a simple partial seizure or these anxiety attacks?
Philly89 jonathan99185
Posted
As I said earlier, I can't speak to epilepsy symptoms as I am not familiar with that, but I DO know anxiety symptoms and everything you described having can be from anxiety/stress.
This is why I used the example of a heart attack earlier, bc like with that, the symptoms of a heart attack also happen to be symptoms of an anxiety attack. So while your symptoms may very well be symptoms of Epilepsy, they are also symptoms of anxiety, too. And that's why at this point you need to rely on your doctor. They are medically trained to decide which issue you have- epilepsy or health anxiety. And from what you said they have done just that, they decided off their professional and medical opinion, that you do NOT have epilepsy and that it is anxiety. So you NEED to accept that and start focusing on how to fix this anxiety you have.
You could think about it like this too... the symptoms of the cold and the flu are almost identical for the most part, right? You personally can't differentiate the 2. But if you go to the Dr they are able to test you for the flu and tell you if you have it or if you just have a cold. What you're doing is comparable to someone who has a cold, and thinks its the flu, goes to the Dr and is tested, the tests comes back negative for the flu, but the person still insists they have the flu bc of their symptoms lol. You can't just pick and choose which health issue you have, you have to rely on testing and a professionals opinion.
darren84 jonathan99185
Posted
like i have said in a lot of your posts. i have the exact same symptoms as you. i have had them for many years. im still here. i had to learn how to manage this and exept it as a health anxiety symptom. i was like you i worried myself todeath on google. like you i had all the tests for epilepsy you could have more than once and always came back normal. after a few years of worry i came to the conclusion that im still here and this is nothing serious just an annoying symptom. the mother of my first child died last christmas of an epileptic sizure, she had de ja vu then had a seizure then went into cardicac arrest and died. after that i was even more convinced i didnt have epilepsy.
bro you need to seek some therapy for your health anxiety before this eats your life away. i wasted many years over health anxiety, years i cant get back.
i was always told by consultants if i had epilepsy id know about it.
jonathan99185 darren84
Posted
hi darren thanks for the reassuring words. when you say your consultants said if you had epilepsy you would know about it in what way would i know? these could all be partial seizures undiagnosed for years. do you mean if i had it i would of had a full seizure by now? i have read so many websites where people with epilepsy say it can stay as a partial seizure for many years then eventually turn into tonic clonic seizures. i am so confused i dont know what to believe but i do fully understand what your saying. i am so sorry to hear what happened to your ex dying from a seizure that is so scary. it is things like that which make me think i have epilepsy esp with her having deja vu.
darren84 jonathan99185
Posted
my ex had partial seizures aswell and when she came out of them she knew she had been out of it. the de ja vu and auras were always like her warning to make sure she was in a safe place before she had a partial or full on seizure. she once showed me her scan results and compared them to mind to give me reasurence and you could see the abnormalities on hers that you could not see on mine as my scans were normal. trust me if you had epilepsy they would of seen it on your tests. also if they thought you had it the docs would of had you straight on medication for it.
google is anxiety trigger my friend stop reading stuff on there its making your anxiety worse.
have you ever seen your scan results and been taked through it?.
if not get the doc to take you through it step by step. also please talk to the doc about treatment for health anxiety.
you are starting to go down the road i went down and its a long road out of it to recovery. i had to go into residential treatment center for 3 months because my health anxiety got that bad i couldnt take it anymore. i let it get on top of me that much i had a nervous breakdown.
try some treatment for anxiety i mean what you got to lose.
jonathan99185 darren84
Posted
Darren you say that your ex had partial seizures but how did she know it was a seizure and not the anxiety that I suffer coz the symptoms are alike?
Also my tests were done 5 years ago so dont know if things have changed but my neuro recentky replied to my letter saying he does not believe it is any disorder to do with epilepsy and he believes it is anxiety
darren84 jonathan99185
Posted
she had epilepsy so long she knew the difference between the symptoms. if she knew i was partial she would get for it and lie down on the sofa or sit down if she was standing. if she knew she was going to have a full on seizure she would go to her safe place in the house so she knew when she had a full seizure she wouldnt get injured. she had a scan on her brain every year and you could always see the abnormalities, it was never normal. our scans are normal with no signs of any seizure disorder. if you had another scan today it would show the same but you still wouldnt be convinced would you bro?.
i have had the same as you for many years and im still here talking to you.
you need to explore the fact that this is something mental rather than life threatening. it killed my ex but we are still here.
jonathan99185 darren84
Posted
Thank you for the message. I am really struggling today it feels like my head is all lightheaded and spaced out to. When I stand up from sitting my vision goes funny for a few seconds and I feel dizzy as well as find it harder to breathe.
The darker vision and panic feeling is happening lots today and little mini deja vus a lot this morning. I am worried sick today please put my mind at ease?
Also how do you know the difference between a simple partial seizure or these anxiety attacks?
darren84 jonathan99185
Posted
even with a partial seizure you would be unaware that you are having the seizure. partial means its effects just 1 area of the brain. you are seeing auras and having de ja vu but you are still aware of whats going on around you.
your finding it hard to breathe and feel panicky because your health anxiety is giving you a small anxiety attack. your anxiety of it today has probably raised your blood pressure a bit which will explain the light headedness. try to relax bro
how old are you mate if dont mind me asking. ?
jonathan99185 darren84
Posted
Hi darren I am 38 years old and really struggling its like one minute I can feel a bit calmer and then all of a sudden this rush of fear comes over for a few seconds and it happens so many times a day I have lost count.
The thing is I have tried to be much calmer the last couple of days but no change in fact feel worse. I do drink about 2/3 cans diet coke a day could that affect me? I have done this for years though
darren84 jonathan99185
Posted
wow 38 . i thought you you were a lot younger. your older than me by 4 years. i know how you feel with that rush of fear it still happens to me daily and its a pain. thats the feeling i used to get before a panic attack or de ja vu. its all anxiety related. health anxiety is the worst you could possibly have because you focus on that one thing you think is wrong and you convince yourself that this is what i have a no one can tell me any different. we dont even believe doctors or specialists even when they show us nothing is wrong and its all in our minds. then after you convince yourself your fine you will find another issue that you think is wrong and health anxiety process starts all over again. i know how scary this is for you because i have been through it for years and i was just like you are now if not probably worse as it gave me a nervous break down and i spent time in mental hospital.
have you had treatment for health anxiety?
jonathan99185 darren84
Posted
Thanks Darren for reassurance. I used to be on citalopram for years but I abused it a bit what I mean by that is their were days I took it the I would miss a day or two then back on it and then miss day. However I weaned myself off it and now I take nothing but tempted to go back on it again. I am wondering whether the abuse of citalopram in the past has caused all of this? I never overdosed on it but I would miss days then retake it over years of having it
jonathan99185 darren84
Posted
Darren just had weirdest thing happen to me again. This has happened a few weeks ago. For a split second my eyes went funny like a blacked out for about one second then the wave of fear just washed over me again and the panic.
What was that??
darren84 jonathan99185
Posted
if you miss days on meds it will screw up the chemical balances in your brain. go back on meds but not citalopram, that drug sucks for health anxiety. tbh citalopram just sucks in general, but you need to take the med everyday without fail. ask your doctor for a different med.
where you from bro?
jonathan99185 darren84
Posted
I am from Manchester, England.
Did you see this message?
Darren just had weirdest thing happen to me again. This has happened a few weeks ago. For a split second my eyes went funny like a blacked out for about one second then the wave of fear just washed over me again and the panic.
What was that??
darren84 jonathan99185
Posted
that was anxiety bro . i get the same thing. dont worry its harmless.
im from the uk to.
darren84
Posted
the wave of fear is the fight or flight anxiety episode. your thoughts are letting it control you. the meds will calm down the physical symptoms but the mental part is down to you my friend.
ive actually properley black out in the past through to panic and have woke up in different places around the house or where ever i am at the time. thats proper blacking out and forgeting how you got there. thats when the docs decided to put me into residential treatment a stafford hospital.
jonathan99185 darren84
Posted
Thank you for being so helpful Darren. I am sorry what you have been through as well it must have been scary that you blacked out but relieving to know it was nothing serious.
If this anxiety I cant believe how real it feels but it wont go away. Everyday I wake up thinking is this going to be the day it goes and I feel better but nope I wake up and some days are worse than others with these washes of fear and weird vision and panic.
Also I can feel my heartbeat in my head when I go to sleep and get these random jerks that wake me up from my sleep.
I am so scared that this all going to turn out to be epilepsy and I have been mis diganosed
darren84 jonathan99185
Posted
nah they would of found it by now mate.
it does feel like you have it bit you dont. thats something they can not ignore. conditions that make you a danger to yourself and others they address quickly or risk lawsuits 🤣 ( trust me i studied law for 10 years ).
get yourself to the quacks and get some meds for anxiety and see how you go.
jonathan99185 darren84
Posted
But do you think it could be epilepsy/seizures?
darren84 jonathan99185
Posted
no mate in my honest oppinion. ask the doctor to take you back through your test result history so you understand it then start getting some help with your health anxiety. if you get meds give them time to work and see if it clears up which it should. its definatly not epilepsy anyway . after all this time they would know and you would know if you had epilepsy. its something you have and not know you have it.
jonathan99185 darren84
Posted
Thanks Darren you have been so helpful mate. yeah I am trying to convince myself it aint seizures its only because everytime one of these weird strange waves washes over me I think this is the time I will collapse into a fit. Citalopram has worked for me in past but that is just for depression not sure what meds to take for anxiety tbh
darren84 jonathan99185
Posted
sertraline is a good health anxiety med if you can push through the temporary side effects. next time one these waves or episodes happen dont fight it just try to relax and ignore it and see what happens
jonathan99185 darren84
Posted
i will speak with doctor to see what they can prescribe.
sorry to be a pain and ask again but i have read with a simple partial seizure your fully aware so how will i know i am not having them all these times?
darren84 jonathan99185
Posted
you dont but thats what you will learn to deal with when you manage this anxiety. my symptoms are the same as yours and i just ignore the waves and de ja vu now. it doesnt happen as often now im on meds but it still happens every now and then. dont over think it or your brain will manifest these symptoms. it is mind over matter. control your mind dont let it control you.
you need to keep busy and active so you can get it off your mind.
darren84 jonathan99185
Posted
il tell you what get them to refer you for a another head scan and when it comes back normal you can be more reasured its mental then you can move forward with a clearer mind for anxiety treatment.
jonathan99185 darren84
Posted
Doctor says he not referring me for MRI and my neurologist said he refer me for MRI as he has fully told me its not epilepsy. He said i gave had tests before and seen by three neuros and they all say same thing.
darren84 jonathan99185
Posted
how long ago was that?
jonathan99185 darren84
Posted
about 3 years ago and i saw my neuro a few months ago to be examined but no scans were required he said
jonathan99185 darren84
Posted
Much worse today darren. Just sat at my desk at work and all of a sudden the worst rush of fear washed over me making me tense up my eyes went funny as if the world was closing in. It lasted seconds and I started to go all warm and tense inside like a massive adrenaline rush. This keeps happening surely this cannot be anxiety now I am trying not to think about it but it keeps happening.
darren84 jonathan99185
Posted
thats a small anxiety attack mate. they can just come out of nothing when you dont expect it. scary aint it?
your thoughts about your symptoms are provoking your fight or flight response. your body is getting the impression you are in danger so activating the adreniline rush . its the bodies response to inpending fear.
its like have you ever been on a scary ride or a situation that gets your adrealine going?
anxiety is a chemical imbalance in the brain that causes the body to wrongfully respond when it shouldnt. thats what the meds are for to rebalance your mind so you can focus on the mental side of it all.
jonathan99185 darren84
Posted
My issues are that i happens almost constantly, I even feel like when people are talking loudly it affects my ears or when I am around loud sounds it goes through me. But its these weird washes of fear that make my vision go dark. I am seeing my GP today got an appt but I really dont think this is going to go. I am fed up and nervous
darren84 jonathan99185
Posted
yeah defiantly mate and discuss the lot with the g.p. when he mentions anxiety listen to what is said. anxiety is notorious for heightening your senses. your always on a state of alert and fear so your senses especially hearing will be all to c**k and heightened. just make sure you try and get some anxiety treatment( not citalopram cause they're crap). just think if you get your anxietys under control this other symptoms may dissipate as you learn to manage it. dont leave there without discussing it all and understanding it. this is your chance to get it all out calmly
darren84
Posted
trust me ive been you are mate and i know its life crippling.
let me know how you get on today
jonathan99185 darren84
Posted
Thank you so much Darren will keep you posted
darren84 jonathan99185
Posted
cheers mate
jonathan99185 darren84
Posted
Darren - I have been to my GP and explained everything and all my symptoms and mentioned that I am worried i may have epilepsy but he just went off on my history and he has completely put it down to anxiety. I stressed so much to him that I dont know how anxiety can cause these feelings constantly even when I am trying not to be stressed. He has prescribed me escitalopram to see if it helps but I was literally almost begging him as to why he has not referred me for scans again and he said looking at history and the letter I sent to the neurologist feedback (see below) it was not needed. He has also put me on NHS waiting list for therapy.
I cant take these feelings their seems to be no let up n fact today is the worst I am almost in constant feeling of this wave of fear through my vison and head.
Neuro response weeks ago below...
I read your recent email to Jill and I would like to comment on this. The symptoms you describe are definitely not consistent with any form of seizure, neither a simple partial, focal seizure or generalised seizure. These symptoms are function and are caused by anxiety. If you are not happy with this information I advise you to see someone else for a second opinion, but I am aware also that I am not the only neurologist who has seen you before. This is really not a seizure. You do not have a form of epilepsy.
Your comment is also not entirely correct that you are aware and alert through seizures. This only happens with so-called simple-focal seizures where you have twitching and moving of some body parts. The symptoms you describe are very different and really there is no reason to be concerned.
From my side I would suggest that you do not worry and ignore these symptoms. I have advised you before to seek the opinion of a therapist and a counsellor for your anxiety. As mentioned you are of course free to seek a second opinion of another neurologist, but this is definitely my point of view and therefore a review appointment is not needed.
I really hope that these symptoms settle and that you soon feel better.
darren84 jonathan99185
Posted
your getting yourself all wound up mate try to relax. start taking the pill he gave you.
what mg has he given you to take daily?
jonathan99185 darren84
Posted
20mg he has given me. Just dont know whether this is all leading up to a seizure or a brain tumor and they wont scan me. What are they waiting for me to collapse before they do anything?
sam77651 jonathan99185
Posted
A specialist has told you it's not epilepsy you have to trust them.
You need to focus on reducing your anxiety and the symptoms will reduce with it.
If you can go to a private therapist for some CBT.
darren84 jonathan99185
Posted
yeah thats the starting dose on that pill. start taking it and take it everyday and dont forget. you probably feel odd for a week or 2 while it works into your system. you dont have a brain tumor bro. they would of found that on your last scan. those things take many years to grow before you start showing symptoms. i was terrified i had bowel cancer untill i had a colonoscopy and they found nothing. the specialist told me those things take 10 years to grow untill they get sinister.
when has he told you to go back for a med review appointment?
jonathan99185 darren84
Posted
cheers darren. its been 4 years since i had the scan though cant things change?? on the scan it said all normal and said no mesial temporal abnormalities as per epilepsy protocol. just scared eventually one of these fear and vision episodes will turn into a complex and generalised seizure.
got a review in 4 weeks
darren84 jonathan99185
Posted
if theres no sign of it then you dont have it. the doc will increase your dosage after 4 weeks probably. im surprised he never offered mood stabilizers aswell to help you along. you are not going to have a full blown seizure. if you havent had 1 in 5 years its unlikely now mate.
lets see how these pills go when they start working properly.
Philly89 darren84
Posted
Jonathan,
At this point another scan would not even convince you that you do not have seizures/epilepsy. Once that scans results came back clear you would then start reading about how, rarely in MRIs or CT scans, things can be missed and then you would obsess over that and insist they missed something because you still have the awful symptoms. I really don't think additional tests would even make you feel better. Maybe for a short while, but then it would all come creeping back, bc that is exactly what health anxiety does.
Also, I want to address your comment: "how anxiety can cause these feelings constantly even when I am trying not to be stressed." TRYING not to be stressed does not mean you are free from stress... I've had manyyyyy times where my brain doesn't feel anxious whatsoever, but my physical anxiety symptoms are still there. This is bc there is a lag time between your mind calming down and your body calming down. You may not feel anxious for days, but your body's nervous system may take WEEKS before it actually feels normal again. It does not seem like you have been stress free for more than a few days, if that, judging by how upset you seem in your comments here over the last year.
You need to listen to Darren and everyone else on here, and trust your doctors advice/opinion! It's good he gave you some meds, try taking those and see if you feel better. They may take a while to kick in but I really hope you find some peace of mind soon. I know it is hard to accept, I think ppl like us almost hope something IS wrong bc then it would mean we could fix it and that these feelings would go away. I know I personally have felt that way sometimes, bc it is very hard realizing that terrible physical symptoms from anxiety have no cure other than fixing your anxiety (which is not easily done).
jonathan99185 darren84
Posted
bad again darren. this vision panic feeling not getting any better at all. it even wakes me from sleep. can anxiety do this?
darren84 jonathan99185
Posted
you taking your new meds every day mate?
jonathan99185 darren84
Posted
Hi darren, Yeah everyday been taking them. My latest symptom along with the weird vision and panic feelings is sensitivity to light and sound its like my head goes tight and I cant take much sound or bright light. What is this??
darren84 jonathan99185
Posted
sounds like side effects of your meds just heightening your anxiety. i said once you start them you will feel wired and a bit more anxious untill your body gets used to them. push through it.
ive read your other post and dont even think about doing anything silly( you know what i mean) . give these pills time to start doing there job.
this is all just heightened anxiety. i got this when starting meds, it will pass
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