Many seizures, extreme anxiety

@lioness Thank you for brightening my morning with these smiling faces!!

Hi, @valm - wondering how you are doing with the feeling that there are no guarantees that anything will be stored in your memory?

You also mentioned getting to a brain overload stage sometimes. How do you manage that when it happens?

Hi Lisa. It’s getting easier for me because I’ve gotten better at accepting the “new me”. sometimes I tell people that most of the things they hear, see, etc gets stored in their memory. For me, I feel like there’s a funnel and only the things that make it through get stored.. the rest fall outside of the funnel. In the moment, I feel like I will remember it, but as time passes and someone mentions something I realize that I didn’t remember it at all. As far as the “overload”, that’s gotten a little better as I can now handle a few things at a time and not get overloaded.. I was recently around lots of people talking, and music at the same time and made it through, although found it hard to focus. Where before I’d have to leave, this time I stayed and just tried to focus on one thing at a time. It’s still quite exhausting. Thanks for asking!

How do you control the "funnel", im asking as i would love to learn what i worry about and not worry for everything that gets said or over think things. We are flying for 2 hours next weekend and i find i am so anxious and i think its because i just came out of icu a week and a bit ago and i am so scared now to even go away for a relaxing weekend with my hubby cos of the flying.

How do you control the "funnel", im asking as i would love to learn what i worry about and not worry for everything that gets said or over think things. We are flying for 2 hours next weekend and i find i am so anxious and i think its because i just came out of icu a week and a bit ago and i am so scared now to even go away for a relaxing weekend with my hubby cos of the flying.

@cindyvag Have you had a bad experience flying before? Is that the root cause of the anxiety? Do you have a set of wireless headphones or some way to distract yourself with soothing music, or perhaps an audio book, or a hypnosis tape to help you relax. Any of these might help you cope with your anxiety. Be sure your husband is aware of your anxiety issues and enlist his help. Perhaps your recent ICU stay and the reason behind it is the root cause. Wear a face mask to reduce exposure to germs, ask for early boarding to give yourself time to settle in. Put your mindset that you deserve to have this time with husband and family. We care here, and want to help.
Ginger

@cindyvag
I’m curious why your worried about flying which is the safest form of transport. Do you worry about getting into a car? Next to the deadliest form of transportation. Only motorcycles are deadlier, do you have one of those by chance?
I like this quote from Leo Buscaglia “Worry does not empty tomorrow of its sorrow, it empties today of its strength.”
My life has been difficult enough without wasting time and energy worrying about what will probably never happen. And even the bad things that do sometimes happen aren’t as bad as most people fear. I chose long ago to get as much negativity, stress, worry, and doubt out of my life and be more confident, positive and focused.
I had enough real fear in my life without creating a bunch of irrational fears.
Perhaps you need medication for anxiety, personally I’m not a big believer in anxiety medication. I feel most people have the ability to overcome it.
I believe our lives are defined by the choices we make. We make choices from before we get out of bed in the morning until after we go to bed at night.
Hoping you can break the vicious cycle of worry,
Jake

Has your neuro ever tested you for encephalitis? I started with Facialbracial distonic seizures and took a video of it. I was admitted to the hospital and my neuro took the video home and studied and searched and said “I think I know what you have” . Took some spinal fluid, sent it to Mayo in Rochester and I was diagnosed with Autoimmune Limbic Encephalitis. Many people have diffferent seizures and other symptoms and are often misdiagnosed. There are many types of encephalitis with different behaviors/symptoms. I would strongly recommend your doctor have you tested so you can receive the proper treatment and get it under control. I”m on Keppra, Vimpat, CBD oil, and every 6 months Rituxamab infusion. When it first started I spent 10 days in the hospital, and went through steroids, Keppra, IVIG which worked for a few weeks then stopped, and then finally on Keppra again with Vimpat which also worked for a only worked for a while and then they increased the dosage and gave me Rituxamab. Seems like they finally found the right formula for me as I’ve been seizure free since Jun 13, 2018. My memory is still pretty scattered. I can pretty much only live in the moment as there are no guarantees that anything will be stored in my memory. Sometimes I can hear the same thing 3 times in a row and it still doesn’t stick. I also get brain “overload”. If too many things are going on or said, or if I”m already trying to process something and someone interrupts, I have a very difficult time and my brain “overload” switch triggers and shuts down. I can’t deal. Anyways, I wanted you to know that there may be other possibilities for a diagnosis that could potentially effectively help with most of your symptoms. They have found that the sooner encephalitis is diagnosed, the better the long term outcome.

Hi Jake, no issue with flying but just got out of icu after being ventilated and for some reason i am feeling anxious about this flight no idea really why thank u for the response