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Posts (22)

Thu, Aug 8 12:02pm · Extreme anxiety and nothing is helping me!! in Epilepsy & Seizures

Hi Lisa, sorry for the late reply.. for some reason these emails were going to my “junk”. I”m doing well considering. My memory issues remain, and I’m still exhausted most of the time, however I’m still seizure free and that’s awesome. It seems that the rituxan is causing my allergy symptoms to really stand out and be resistant to meds. Went to an allergist/immunologist and did a bunch of allergy testing and will be starting my shots in the near future. My neurologist wasn’t quite sure if it would help (I have chronic sinus infections), but the allergist believes it will, so it’s worth a shot for me to try and get that off my list and stop all the allergy meds in the future. Finally went on a longer rockhounding trip (missed last year due to my encephalitis). Drove all the way up and all the way back and that in itself felt awesome! Prior to that I flew home (Hawaii) and was there for a month to help with my mom who ended up passing. My wife and sister were really scared about me flying alone, but I made it. United airlines app was wonderful with directions to gates, etc. Both trips were milestones for me as I wouldn’t have been able to do them last year. So I’m one happy girl!

Wed, Jul 10 1:23pm · Extreme anxiety and nothing is helping me!! in Epilepsy & Seizures

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!

Mon, Apr 8 5:58pm · Frustrated and worried about my husband in Epilepsy & Seizures

I would strongly suggest finding a neurologist who specializes in Epilepsy or Encephalitis. When I was in the hospital, another neuro that first saw me was ready to send me home… and my wife started crying and asking what she was supposed to do when I had the next one and how blue was “too blue”. The nurse intervened and between her and her boss, they managed to keep me in the hospital. Thankfully, that first neuro went on vacation or was off and another came in.. We showed him my video of how it looked when it first started and he studied it the whole night, and the next morning came in saying “I think I know what you have”.. He was a motion disorder neurologist. and one who I will be forever grateful for. Although a neurologist is a specialist in and of itself, they each refine their specialty into different areas. Find one that will take the time to study your symptoms and who sincerely cares and wants to help you.

Wed, Mar 27 10:03am · Extreme anxiety and nothing is helping me!! in Epilepsy & Seizures

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.

Sat, Mar 23 2:54pm · Barrett’s esophagus in Digestive Health

Hi Dave… I’ve had it for years. Initially I was on acid reducing meds which worked for a few years. Try to stay away from spicey foods and other things that cause heartburn.
After mine got pretty bad (I had food actually come up because my esophageal sphincter wasn’t closing at all, they did a Nissan Fundoplication on me where they wrapped the upper part of my stomach around my esophogas, so neither acid nor food would come up into my esophagus. The one problem I have now, is that I can’t throw up. That initially sounds awesome until your body tries to and can’t and then I’m in horrendous pain with the heaving and have to wait until my body can release the nausea some other way. Try to head it off early and watch what you eat/drink.

Mon, Mar 18 10:11am · Daughter with Newly Diagnosed Generalized Absence Seizures in Epilepsy & Seizures

I would have your neuro check for autoimmune encephalitis. They sent my spinal fluid to Mayo (highly recommended) to test for antibodies. I was diagnosed after having Facial brachial distonic seizures. My neuro never heard of AE until me. I video’d my seizures and he spent the night researching and the next day said “I think I know what you have”. Took spinal fluid, sent it to Mayo who confirmed. My body was producing antibodies that were attacking my brain thinking it was an “enemy” when it normally would attack a virus. AE is very often misdiagnosed as it is rare. Please have your Dr check for this. The sooner the diagnosis and treatment, better chances of full recovery with minimum brain damage. In the hospital they tried steroids, nothing worked.. so they tried IVIG and it stopped the seizures, though temporary. There’s an International Autoimmune Encephalitis Society group on facebook and they also have a website. Their website is loaded with information. Please please have your Dr check for this.

Mon, Mar 4 10:26am · Conversion disorder with pseudoseizures (PNES) in Epilepsy & Seizures

Have they drawn spinal fluid to have that tested for things like Encephalitis? I started with jerks on my left side that went into seizures. I have autoimmune Limbic encephalitis type LGI1 related to Voltage Gated Potassium Channel antibodies. My serum from the spinal draw was sent to Mayo and they confirmed the antibodies. These antibodies normally attack viruses, etc but went after my brain instead. A lot of people are misdiagnosed and go for years without proper treatment. The sooner the treatment the better the outcome (in majority of cases). Look up autoimmune encephalitis. There’s many different types with different syptoms.

Oct 1, 2018 · Keppra in Epilepsy & Seizures

@joedavid please forget my last post asking for a reference.. I’ve since found one. Thanks