Scared of a diagnosis - Please help

Hi guys, I'm new here and for the past year I have been having these bizarre symptoms once in a while that i simply dismissed as a panic attack provoked by my anxiety. Usually, these 'attacks' come out of nowhere. I can go through weeks without having one and then suddenly experience ten in a day. Sometimes I believe they are triggered by alcohol or nervousness, although I can also be extremely happy and in a good place in my life and yet suddenly randomly have one. For me the main symptom is a very intense feeling of deja vu like I'm remembering a strange dream or something. As I'm experiencing this deja vu an absolute feeling of terror washes over me for absolutely no reason. During this time, I am still able to talk and act normally if I try to (usually I pretend I'm fine when I'm with my friends or I just go quiet) but I feel extremely detached from surroundings like my body or my mind isn't really in the room. After the intense feeling of fear and deja vu disappears I get a strange metallic taste in my mouth. When it stops, no matter how hard I try, I can never remember what my deja vu/ dream I was remembering was about and I immediately go back to feeling normal. The whole 'attack' lasts under a minute. Like I mentioned earlier, I used to dismiss these as panic attacks but since I've done some research online my symptoms seem to eerily similar to simple partial seizures. I am one hundred percent going to see a doctor about this (I have booked an appointment) but I am very scared about being diagnosed and the effect it will have on me for the rest of my life. I know I sound stupid but I'm only 22 and although what I've been experiencing is horrible it doesn't effect my daily life as the attacks are so sporadic and I am fortunate enough to be able to go back to normal immediately after having one. Being diagnosed with epilepsy sounds so scary and my parents will naturally freak out when I tell them. It's awful to say but a small part of me wonders whether I'd feel better leaving it undiagonised than having to confront it. I don't really know where I'm going with this, I just wondered if anyone has gone through a similar situation and can offer me some insight in how to deal with this as I'm feeling quite scared and lost. Thanks in advance!

8 Replies

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  • Hello,

    Let's take this one stage at a time.

    Firstly take yourself down to doctor tomorrow and tell them what you all that you have said here. I am sure that your doctor will seek in a neurologist who will best equipped to ask you all the relative questions and will request all the relative tests etc.

    Try not to look on the dark side as in today's world even it turned out to be epilepsy you could well be one of the seventy percent of people whose epilepsy could be completely controlled by medications.

    Epilepsy in today's world is completely different to what it used to be. Please take your parents with you when you visit your neurologist and they too can both ask their questions and be educated.

    Please make sure that you see your doctor tomorrow and explain your suspicions to your doctors receptionist.

    Please keep updated to your progress.

    Most of all try to relax down as this is essential

    Goodnight and you care

    Richard x

  • Hi Richard. Thank you so much for taking the time out to write me a response. It really means a lot! I think taking my parents to the neurologist is a great idea and something i'll think about. I also have a doctors appointment in a few days so hopefully that will help me get some answers.

  • You take care but please make that telephone call to your doctor

    Pleased keep in touch and tell me how things progress.

    Please do not drink any alcohol as this can cause epilepsy. Likewise always get a good nights sleep as sleep is a primary food food to ensure that you keep well.

    Goodnight

    Richard

  • Coming from a neurologist

    1. Write down all your symptoms. Note especially how you feel, how often it occurs. Make a copy for your doctor. Stay off the drink until you've seen him / her. No need to take your parents along. I never did (17 at the time). I see over 100 patients a month. Your symptoms can mean many things.

    2. If you're experiencing these things: Get plenty of sleep (8 hours +). Get into a routine. Go to bed and get up at the same times. This always helps. The same applies to meals.

    3. Don't jump to conclusions until you've a had a good talk with a neurologist. If you need a referral (UK) get an appointment at Outpatients. You'll get to see us faster than going to a practice. You can go straight to a hospital.

    4. Remember, GPs can only listen to symptoms. You need a neurologist diagnosis. Don't get worried. Your symptoms can mean MANY things. Don't let friends etc. tell you about so and so and so who felt the same.

    5. You need to come to a BIG hospital. Not a place that has one visiting neurologist. In the UK, you're better off in one of the big cities.

    6. In the meantime, don't do things where you might need other people's help when all tis happens, i.e. don't drive, ride a bike or go swimming. Just precautions for the time being.

    Stay in contact.

  • I think the important thing to remember is that once you have a diagnosis, you can start treatment options. Your life will hopefully then become more under your control again.

    Good luck xx

  • Hi Londongirl22

    It looks like you’ve had some really useful replies here, and it’s good that you’ve made an appointment to see your doctor. If they think it might be epilepsy they should refer you to a neurologist. Just to clarify, in the UK you do need to go to your GP first to get a referral.

    I can understand the thought of being diagnosed with epilepsy can be scary. Some people actually find it’s a relief to get a diagnosis, as it helps to explain the symptoms they’ve been having. And as Richard says, if you are diagnosed with epilepsy there’s a good chance your symptoms could be completely controlled by epilepsy medicine.

    If you have any questions or would like to talk, then don’t hesitate to contact us on the Epilepsy Action Helpline on 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

    Best wishes

    Grace

    Epilepsy Action Helpline Team

  • Hi Londongirl,

    I am 23 and have suffered from "panic attacks" since I was 6. My story is almost identical to yours and I was diagnosed with partial seizures almost 3 years ago. I never considered that my panic attacks were seizures until I was older and could better explain my symptoms. I would encourage you to move forward and discuss this with a doctor and here's why: getting treatment changed my life. When I finally had my first appointment and the doctor told me I wasn't losing my mind, I cried because somebody understood for the first time. My seizures paralyzed me with fear and it made it hard for me to function in certain situations. The good thing about partial seizures is that you may not need a "hard core" treatment. I take Lacosamide twice a day, no side effects, and no seizures. I have been able to move on with my life! I don't let things hold me back anymore. Now, that's not to say you do have them, but I'm saying it's worth finding out because in the long run, it will benefit your health. Another thing, my neuro told me treatment is for the best because over time, seizures can build stronger pathways and may get worse/appear more often. Keep us posted and good luck!

  • Hi, CJ1454

    Sorry for not replying sooner I've only just seen this. I really appreciate your message, especially as we are similar age and have a similar story! I went to my GP today and she said my case sounded like textbook partial seizures so I've been referred to a neurologist where I'll most likely be given an official diagnosis. I'm hoping my neurologist will discuss my treatment options with me and we can work out together the best route to go down. I still haven't told my parents about my GP visit as I never told them that i was even experiencing these symptoms in the first place. I'm so worried they will freak out especially as the word 'epilepsy' sounds even more serious and scary to someone who doesn't know anything about it. I'm very lucky that I can chat to my friends about it who are so supportive and make me feel less alone.

    How did your parents or family react when you told them?

    And I'm so pleased to hear your treatment has helped and you are no longer having seizures! That is amazing news!

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