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Can this really be epilepsy?

Fri, 07/05/2019 - 11:48
So I'm 31 years old, and two years ago, I had this very strange experience. I was about to leave to go to a friends house when suddenly, I couldn't remember where I was going or why. I looked through old phone messages remembering none of it, even though they were clearly messages I had sent. After a few minutes I was back to normal, albeit shaken and pretty scared, and spent the rest of the day in bed hoping it was a one off. It wasn't, but it also was the most unique 'attack' I've had, in that I still remember it even now. After that, every week or so (sometimes 2-3 weeks, but sometimes multiple times a week. Sometimes more than once a day. The longest I went was 4 weeks without an attack) I would have this strange dizzy feeling, seemingly triggered by random thoughts I can never remember, followed by a feeling I can only describe as deja vu, followed by.. well I don't really know. I can never remember the attacks after they've happened anymore. They usually last between 30 seconds & five minutes, but to me, it's like no time has passed and I'm suddenly somewhere else. Either laying down in bed or surrounded by people asking me if I'm okay etc. Other times I apparently carry on as normal. It happened once while I was at work on my lunch break, I remember feeling strange as if an attack was about to start, someone coming in to ask me a question, then nothing. Next thing I remember is being back at work like normal. I asked my co-worker if I did or said anything strange but she said I seemed normal, although I did have my head in my hands when she first walked in. There doesn't seem to be anything that triggers these attacks, they just seem to happen at random. I have managed to capture these attacks on video a few times. Once on my webcam where I just sit there with my eyes closed for a few seconds then turn off the webcam, and another from the CCTV cameras at work, where I just stand there with my head in my hands hunched over a trolley, then one of the supervisors asking me if I'm okay. I look pretty normal after that although slightly out of it. The first neurologist I saw didn't seem that concerned or interested, and was pretty certain it was epilepsy almost straight away, so immediately put me on Levetiracetam. Unfortunately, it which made me feel awful and did nothing to stop the attacks. I have had three MRI's now which have all come back normal (aside from an 'arachnoid cyst' which are apparently very common and rarely cause issues. The last MRI I had was to make sure it hadn't grown in size which, thankfully, it hadn't) as well as multiple EEGs which, again, were perfectly normal. The neurologist then told me it was unlikely to be epilepsy, and could be Anxiety & Depression related. I've always been a very Anxious person so I went along with it. I was put on citalopram which, again, just made me feel worse and did nothing for the attacks. If anything, they increased. I'm now seeing a different (much better) neurologist who actually seems to care and we're back to thinking it's epilepsy related. I'm now on 150mg of Lamotrigine and the attacks have seemingly lessened. When I was on 100mg I went a whopping 7 weeks without an attack - the longest by far. I haven't had another episode since being on 150mg although it's only been 3 weeks. My concern comes from looking at people talking about absence seizures, and how they typically last only 15-30 seconds, where as mine can last several minutes. My other concern is my general memory. I've never had an amazing memory but I definitely seem to have gotten worse at remembering things short term. If someone asks me to get something at work for example, there's a good chance I'd have forgotten what I was looking for by the time I get there. I know that happens to everyone from time to time but it seem's to be happening to me a lot more often recently. It also seems to be effect long term memory. I have these strange 'gaps' on my memory where I don't remember certain events. Not like I forget about them but remember when reminded about them, more like it never happened. For example: I play a lot of video games and I was speaking to a friend about a game I had wanted to buy, only for him to tell me I already own it, and had lent it to him about a month or so ago. I still have literally no memory of buying or lending it to him, even though I clearly did. Scary. Things like that keep happening. It can be events that happened a month ago or something that happened years ago. Another example: A few years ago I bought a game console from a friend of mine (same friend) but again, have no memory of doing so. If you'd have asked me, I would've said I bought it new. I've also had trouble sleeping recently. It takes me a long time to fall asleep and I sometimes don't wake up until gone midday. I also feel quite dizzy and out of it at times These things keep happening and it's quite worrying. Could it be the medication? The epilepsy itself? Or something worse that may have been missed? My main fear is these attacks suddenly getting worse. Like if I pass out and hit my head, or them evolving into full on seizures. I keep telling myself the medication sees to be working and everything's going to be fine, I just can't help but worry. (All this googleing isn't helping!) So, yeah! If anyone has gone through anything similar or has some success stories with Lamotrigine I'd love to hear it. Thanks for reading.

Comments

I don't remember if I had

Submitted by birdman on Fri, 2019-07-05 - 22:01
I don't remember if I had increased anxiety form Lamictal (lamotrigine).  I was on it for too short of a period because for me it caused a rash down the center of my chest and back.  I notified my doctor's office and was off of it in just a few weeks.  A good percentage of the medications that I have tried (17 so far) have caused increased anxiety in me.  But the good news is that if it works for you then this is an indication that your seizures may respond well to other anti-seizure meds.  You have a good neurologist now that you can talk with.  Tell doctor about all of the discomforts and maybe a different medication will work just as well on the seizures and leave you with fewer side effects.  I'm still on the old drug Dilantin (phenytoin).  It gives me the best control with the least side effects.Mike

Hi OllieS,Thank you for

Submitted by Anonymous on Mon, 2019-07-08 - 09:02
Hi OllieS,Thank you for sharing your story. It’s important that you continue follow-up with your healthcare team to express your concerns and discuss the increase of feelings of anxiety and depression,  as well as any side effects, seizure types, changes in behaviors and symptoms. Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures.Please visit:   https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy  Learn more about seizure medications and side effects here:https://www.epilepsy.com/medications/lamotriginehttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/medications-and-mood It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns . You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org  , epilepsy.com/helpline , where a trained information specialist can connect you to resources,  provide referrals and additional support.  It is also important to recognize that epilepsy is more than just seizures,overall well- being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   It is common for those living with epilepsy to experience feelings of depression: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health/overview-depression  and anxiety: https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-advanced/anxiety-disordersLearn more here about the challenges with epilepsy related to thinking & memory: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory/thinking-memory-and-epilepsy The Wellness Institute:  epilepsy.com/wellness   ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools  Additionally,  there are plenty of things you can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsyCreate a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure:  https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Tracking your seizures, record your medical history, medications, side effects,moods, or other personal experiences. using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf

Hi, I am 22 years old and

Submitted by Jessi.len on Sun, 2019-07-21 - 09:53
Hi, I am 22 years old and have seizures due to stress triggers. Stress generally lowers my tolerance level and allows other triggers to set me off as well. I have had short term memory, blindness, loss of strength in my legs and arms at times to where I couldn’t use them temporarily, and complete loss of consciousness due to seizures. There supposed to be a proper formula for everyone to manage their seizure either with medication or a proper diet or both but I haven’t found it yet. Maybe someone here could look into a career as an epileptic nutritionist? Lol. Mine are getting to be pretty scary for me now because I’m having catatonic seizures. They’re extremely painful. I have medication but it makes me feel off the way an aura does. Just posting so someone out there can see this and know what they’re feeling isn’t strange or unusual. Pains in your arms or twitches or loss of strength in a limb temporarily or confusion or loss of speech or generally the inability to speak what you are trying to say properly, loss of vision temporarily, week long migraines, and of course the frustration that you have any of these symptoms is very common. Good luck! We all need it.

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