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Recent "Likely TLE" diagnosis, this is all new to me!

Mon, 01/04/2016 - 15:24

Hi folks!

I am new here because I only recently discovered that I "very likely" have epilepsy after my first visit to a neurologist a couple of weeks ago. I'll give a background on my story that has caused me to find my way here. Sorry for the length, but since all of this is new to me, I'm looking for help to connect all of the pieces.

I am currently 37 years old. I first started having anxiety and panic attacks in my early 20s. These led in to an instantaneous deep depression (at least that's how it felt...went to bed normal, woke up at 4am crying and feeling scared and depressed beyond words). Nothing bad in my life had happened, and that depression lasted quite a while. In the years between now and then, I have been diagnosed as both major depressive disorder and Bi-Polar II. My most recent p-doc settled on Bi-Polar II, and I do believe this is the more correct diagnosis, as I have had several long depressive episodes intertwined with long periods of feeling "normal" to very good. (Only once ever manic like BP1, and that was very short lived). For the past 3 years my most recent p-doc had me on 200mg lamictal (which we were using to treat the depressive phase of bi-polar), Bupropion and Clonazepam as needed (which I only used for flying, which made me nervous.) 

Over the past several (maybe 4-5?) years I have been getting these "episodes" of feeling very spacey and out of it, with brain fog, strong anxiety and depersonalization. The anxiety symptoms are fairly typical: i feel like I might pass out, have a heart attack, get sick to my stomach, etc. Very frightened with no obvious trigger. These episodes would come on instantly, out of the blue, and in different situations. I often felt like they were connected to low blood sugar, so for a while I even suspected I just reacted to hypoglycemia really poorly or something. I saw doctors frequently during these years to try to narrow it down to no avail. I'd hear "it's probably allergies" a lot, but they continued to occur. I never lost conciousness during these episodes and they would generally pass. They began to become more frequent and worrysome to me over these past several years, to the point of sometimes multiple times daily. Sometimes (in particular once in October) the episode would come not just with anxiety, but with instant, strong depression. I started to use my low-dose "as needed" Clonazepam more frequently. I used to smoke marijuana semi-frequently but haven't in months just to rule that out as a cause. Stopping smoking had no positive effect on stopping the episodes.

On a Friday in mid-November I went to my primary care doctor for a hurt shoulder. He prescribed PT and also a steroid shot to reduce inflamation. As the feeling of the local anesthetic happened, I felt very woozy and passed out. I was then awoken by the doctor (he said I was out for about 30s) and felt horrible. My heart rate and BP dropped significantly, I was sweating profusly and could hardly speak. I fought to remain concious. I recall nurses running in, and they put O2 on me. I remember barely being able to mumble but asking if I was going to die, and asking them to call my family and girlfriend. I heard them say "Call 911, lets get him to the ER". I spent 4 hours in the ER. They did an EKG, IV, etc. and I still felt extremely groggy and horrible. My primary doc visited me in the ER. I asked him if this was somehow connected to these "episodes" of the past many years and he said possibly and ordered an EEG. I left the ER with dad and girlfriend, still feeling pretty crappy. I was exhausted the rest of the weekend.

I went for the EEG a week or so later. A little bit after that my primary care doc said it came back with "abnormal temporal lobe activity" which surprised me since I didn't have any episode during the EEG. He referred me to a neurologoist. In the mean time, during a vacation I suffered an episode that came with a very awful panic attack. Again, I used the Clonazepam, and continued to meter out my remaining pills of it for the rest of the tirp. I was able to see my p-doc before the neurologist and since seizures were possibly suspected I was immediatley taken off the Bupropion as it can lower seizure threshold. He also gave me a larger perscription for the Clonazepam until we could figure out a better treatment since it was at least helping moderate symptoms and provide some anxiety relief.

I got in to see the neurologist recently for the full exam about 2 weeks ago. He did the full exam and ordered an MRI and my blood tested for lamotrigine level. I did both that day and the MRI, thankfully, came back normal. My lamotrogine level was rather low so he asked me to increase to 200mg twice daily. He also added Lyrica 50mg twice daily. Finally, he said that I should stay on the Clonazepam for now, and take it regularly rather than randomly as-needed. I asked if I hadn't coincidentally been on the lamotrigine could I have been having worse episodes and he said that was possible. His initial diagnosis (he said he is not certain, but it is likely) is temporal lobe epilepsy, with left lobe focus. They are apparently simple partial seizures as I don't lose consciousness, but rather I just get the instant episodes anxiety/depersonalization/depression, which eventually fades. They can, however, leave me feeling very groggy and worn out, but may also be due to getting used to new medications. He also commented that it is sometimes hard to distinguise between simple partial TL seizures causing the anxiety/depression and anxiety disorder, or just having anxiety over one happening.

So that's the story. Here are some questions I would start with:

1. Do others have symptoms similar to this, with seizures presenting strong anxiety episodes and depersonalization, and sometimes depression?

2. Can I rightfully know these have been frequent small seizures I have been experiencing since the EEG showed abnormal activity?

3. Is it possible that issues I have seen I have had for years and visited a p-doc for be related at all to TLE and I have just never known it? If so, do I just scrap going to a p-doc, and see a neurologist for all of this?

4. What other sources should I check out for learning and narrowing down exactly what I might have? Do I get a second opinion? (FWIW, I was very confident in the neurologist's credentials and abilities)

5. Assuming these are seizures and are causing the anxiety, or at least closely related, what are good avenues to persue for learning how to cope and minimize the impact on my life?

 

Thanks for any feedback!!!

 

 

 

Comments

All seizures are different.

Submitted by just_joe on Thu, 2016-01-07 - 12:32
All seizures are different. The symptoms may be the same but there are other things happening to each person. !. yes what you posted can land in different seizures, 2. I had been written up for day dreaming in class for almost 2 years. Absence and focal seizures look like the person having them is daydreaming. 3.Yes you could have had other seizures then the ones you posted. As for your P doc. Your PC treats you for most issues but do you go to him when you have a tooth ache, or a heat ailment or surgery? I have a PC, Heart doctor and s neurologist. I have a doctor for my foot since I broke my toe. Specialization does help since they treat many things and look closer into each area of your body. 4. No second opinion is needed especially if you like the neurologist and very confident in the neurologist's credentials and abilities 5. This site has a lot of information. Start in the get help section. Finding out the types of seizures you may or may have had and what to do when you have them. Follow the directions on your prescriptions. If taken 2 times a day those times need to be 12 hours apart. That way you keep the therapeutic levels where you won't have a break thru seizure. To get the best results and answers always ask questions when you see or call your neurologist. With each visit he will be asking questions. Answer them and be honest. I have a question I ask for every question he has. By asking questions I have gotten the number of seizures reduced to a seizure every 8-14 days. Other questions and changes of medications has reduced the time in those seizures from 5-8 minutes to 2-4 seconds. The recovery time was 15-45 minutes and is now 2-5 seconds. I would also suggest you get the My Epilepsy Diary which is on this site. Watch the video. It has a note pad in it and other things that can help you. Give your neurologist permission to bring it up and it can help him/ There are graphs and other things in it that can help with medication or dosage changes and possible procedures that might help get you seizure free.

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