Help me please things going worse

Brain and nerves
1

Terrible day so far just had another few bad experiences this morning with this. Had the deja vu, random flashbacks but the weird intense fear just come over me which makes my vision go funny and hazy/cloudy. It can last for about 5/10 seconds before it starts to fade and I can rememvber the whole experience but they seem to becoming more frequent which scares me that I am heading for a massive seizure. It also leaves me feeling so panicky and my head always feel tight and heavy after. 

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. 

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Hi Jonathan,

I had this start to happen to me in 2012 and I was diagnosed with simple partial seizures (now called focal aware seizures).  They are different for everyone but we share some of the same symptoms. I feel fear and know immediately what's about to happen. I fear I will pass out (but never have). Sometimes my vision blurs and I get chills/goosebumps with tingling that shoots down my arms and hands. I  can talk through it if I have to although I would rather not. I do not lose consciousness.  I am very tired afterwards and can nap immediately if given the opportunity. 

I am not a Dr. so I can't say this is what you are experiencing too. It's hard to diagnos these (usually based on symptoms). They want to catch it on an EEG to be sure. In fact, my naurologist wants me to have another eeg soon to try to make sure these are seizures and not something else.  He says silent migraines can also have similar symptoms. So I may be headed for more tests soon. However, the fact that my medication (Lamictal 400mg) has worked to control them for the most part for 5 years , makes us think they are in fact seizures.  

I know this is scary and you have a few months to wait for answers but try to relax. If they are seizures the best thing you can do is try to get plenty of sleep and reduce your stress. Watch for what happens before your episode and start to find patterns. For me if I'm stressed, over tired and/or dehydrated I am headed down the path toward a seizure. Other triggers can be too much caffeine or alcohol so I pretty much cut those out except for special events.  Triggers and experiences can vary from person to person which is part of why it's hard to diagnose.  Luckily mine have never progressed to a generalized seizure!  There are people that just have simple partials out there. Best of luck and let me know if you have any other questions!

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One more thing...I forgot to speak to anxiety. Yes these sound like symptoms that could be related to anxiety but I never had anxiety before these episodes began.  The anxiety for me was caused by the episodes. I actually did have an abnormal eeg  when first diagnosed. However after taking the medication for awhile they sent me for inpatient monitoring where I did not have an episode while there. It's tough to catch especially when no one can "see" what's going on like they can with a generalized seizure. Unless they can catch you having one via an eeg, they base a diagnosis on symptoms.  None of us can walk around permanently attached to wires waiting for a seizure to happen.  Lol. As I am female, mine seem to be related to my hormones fluctuating during my cycles. So all that to say that you know your body. If it feels like anxiety then surely bring that up at the Dr's office but I just wanted to point out that real health conditions do cause anxiety as well. Also panic attacks tend to last much longer that simple partial seizures.  Hugs and I hope the rest of your day is better!

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Hi Christiane,

Thank you very much for your message. I am so scared now this could be simple partial seizures and worried sick that I will start having full blown seizures. I am praying so much this is anxiety and I know that even if they send me for tests and if they come back clear(which dont get me wrong I am praying they will) I will still have no answers. My fear in life is epilepsy/seizures and I really am scared this goining to go worse. 

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Thanks Christianne and thank you for being very understanding. I agree that they cant test for epilepsy unless your having one. Yeah that is why I dont think they are panic attacks and I feel they could be Simple Partial Seizures but what worries me is will they generalise into full blown seizures. I have had these on and off for years but they are pretty much happening on a daily basis now. Last time this was the content of the letter I received from my neurologist.

Please see below

I am referring to this patient who was seen in February 2014. As you know Mr Smith suffers from

progressive deja vu symptoms and the investigations which I requested via the NHS were normal.

He was then seen by my colleague, Dr John Ealing in his NHS neurology clinic and also Dr Ealing thought

that his déjà vu was not related to seizures. I do very much apologise for the delay in sending this as it

has been somehow very difficult to get in touch with Dr Ealing on this matter and I appreciate very

much your fax from the 2 May 2014 in which you mentioned that Mr Smith has continuous déjà vu

feelings and anxiety symptoms. From my side I would clearly rule out epilepsy as being the background of Mr Smith’s sensations and

symptoms. It is from my point of view a matter of anxiety and therefore your trial with Propranolol is

very sensible. If he doesn’t respond he may need a higher dosage or another drug such as Mirtazapine.

The prognosis remains open at the moment and I wonder also if the patient would benefit from

counselling. I have emailed a copy of this letter to Dr Ealing who already mentioned has seen the patient and would

be grateful to Dr Ealing if he could just reconsider his case. If he has a different view than myself I

would be more than happy reconsidering my impression and opinion of Mr Smith.

I will come back to you in another letter in due course.

Thank you once again for your information and again my apologies for the belated response.

How can they diagnose to rule epilepsy out from this? Also the fact it has returned after it settled down over the last couple of years which is why I am self diagnosing. 

Sorry for the long post.  

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Thank you for sharing. It sounds like you were displaying some true signs of anxiety also when you presented to the Dr. with your symptoms. We all do when we are freaked out by what is happening to us and are searching for answers. Totally normal.

However, that doesn't mean you aren't also having seizures. Sounds to me like you being referred to the neurologist is a step in the right direction. Although we all want to have blind faith in our doctors, their areas of expertise vary and sometimes a second opinion is warrented if nothing more than for your peace of mind. Also something to remember...if anti-anxiety drugs aren't helping the problem then you have to mention that at your visit as well.  If it's anxiety the medications should help.

Partial seizures affect one area of the brain and generalized are when they spread to both sides (hemispheres). I could be wrong, but this is what I was told. That's why they like to start treatment with an anti-seizure med to see if it helps and prevent it from generalizing.  From my experience, Lamictal saved my life. It did give me some sided effects (actually anxiety was one of them) during the first month of taking it but then i felt better. I was about 4 years seizure free when I started having problems again and a bump up from 300-400mg seems to have done the trick.   

Try not to freak out. Best case scenario, this is all anxiety and you and your doctors will be able to find the right medicine and therapy that will work for you. If it is seizures,  I know it's scary.  It's easy to live everyday thinking "could I have a breakthrough event today?" I've had to learn not to think about it and practice relaxation skills and get more rest.  This has not been the end of the world for me. Once I got them under control I felt like me again. Dont give up on feeling better!

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Thank you for sharing the information. Cant cope the thought of this possibly being seizures. 

If it was seizures do you not feel that this would have generalised by now in all the years I have sufferered with this? As if they dont try me on medicine and wjat if I have a seizure what am I supposed to do tell them to put me on medicine?

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I wish I knew the answers. My best advice is not to give up on your health. Help the doctors to understand exactly what is going on from your perspective and be a partner with them in making decisions about how to move forward heather that be tests, medicine, therapy or a combination of those. Try not to worry and take care!