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Posts (20)

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

Oct 1, 2018 · Keppra in Epilepsy & Seizures

Hi @joedavid could you please post or send me a reference that gives titanium dioxide as an ingredient in Keppra? I couldn’t find one, or aluminum
Thanks, Val

Sep 22, 2018 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Hi @arunhari . I began with facial brachial dystonic seizures/epilepsy and had facial and arm jerks on my left side. 10 days in the hospital and they got the seizures to stop with IVIG therapy and Keppra at 500 mg twice a day and was weaned off of the Keppra in Feb/Mar. THen the jerking came back so I had another 5 day IVIG infusion. That lasted about 3 weeks. Then I had my first RItuxan infusion in March. In April I had grand mal seizure and was put back on Keppra. Then had more grand mal and absense seizures so up’d the Keppra to 1000mg twice a day. Almost 2 months seizure free and had 2 more grand mals one day after the other, so they upped my Keppra to 1500 mg twice a day. And then added in Vimpat. Just passed the 100 day mark with no seizures.
I have not had the type of seizure that only comes when you are sleeping.