About

First Name
LM

City
Modesto

State/Province
CA

Country of Residence
US

Health Interests
Autoimmune diseases, Blood disorders, Bone, joint, and muscle disorders, Cancer, Children's and teen's health issues, Chronic pain, Eye disorders, Healthy Living, Heart and blood vessel disorders, Kidney and urinary tract disorders, Men's health issues, Neurology (brain and nervous system)

Posts (1838)

1 hour ago · epilepsy in Epilepsy & Seizures

1710dave
Not too long for me. There’s a man on here who writes posts that make war & peace look like a sentence, lol.
I doubt you’re going to find a doctor to agree that amalgam filling‘s are responsible for your seizures. Not that long back I also was concerned about that and so I called poison control about it. They claim there’s no valid proof that amalgam filling’s can cause mercury poisoning. They claim a person can get more mercury eating tuna than from the mercury in a filling.
They claim that very extensive testing has been done that has not proven that amalgam fillings can cause mercury poisoning even if the filling has shrunk or is cracked. My amalgam filling‘s have all been replaced because they have worn out. There are blood tests you can order to verify it one way or the other but without a doctor you'll have to pay for it yourself and I am not sure if the mercury test is one of them that you can order. Why they refuse I don’t know.
i’m assuming you’re still having seizures, you mentioned having tonic clonic seizures about every two years. Are your focal seizures under control or do you still have some occasionally. Have you been on 1,000mg of Keppra since 2014 or have you been on other meds or dosages?
If you have been on 1000 mg of Keppra since 2014 and have continued to have seizures I’d be curious why your doctor never increased it.
How do you try to detox yourself?
Take care,
Jake

1 hour ago · epilepsy in Epilepsy & Seizures

1710dave
Something crazy is going on my posts are changing what they say I’m in the process of correcting it now.
Jake

3 hours ago · epilepsy in Epilepsy & Seizures

1710dave
First of all, I’d like to welcome you to the Mayo Clinic Connect Forum. I spotted your post right away and replied but I did something stupid and the post disappeared, do that’s why the delay.
Yes, if it were me I would find a Neurologist who specializes in Epilepsy even if your seizures are under control. You probably know the unpredictability of seizures so who’s to say what could happen in the future. I always feel more comfortable with a specialist. Unfortunately, and I’ll probably get in trouble for saying this but it’s true, there are neurologists out there who are dumb as dirt and they care just about as much.
If your seizures are uncontrolled and no one has been able to decrease their frequency or severity I would recommend going to an Epilepsy Center to see an Epileptologist. Now it’s time for the inquisition, I’ll try to keep it short and give you a break since you’re new. Do you know what type of epilepsy you have? What type of seizures do you have? What medications are you on? Do you have nocturnal seizures? How long have you had epilepsy? Have you had the usual blood tests, MRI or another type of imaging or EEG? Were they normal?
Take care,
Jake

5 hours ago · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

@rhartl
Hello,
First, congratulations on getting your commercial license, that’s great. In the beginning, your story sounded just like mine. I was on Dilantin and Phenobarbital too until the Dilantin became unstable and my level was either low or toxic, so I switched switched to Carbatrol. My dad was also a truck driver, although later he did less driving and became dispatcher and shop foreman. I can’t believe that after 40 years they’re still making you go through all that trouble. I think it’s a little much but I know of a man in Scotland who was seizure-free for 50 years and then had one out of the blue, so one never knows. But realistically how often does that really happen?
Stay safe out there,
Jake

1 day ago · Having Seizures and Need Input in Epilepsy & Seizures

@1964chevyz
Hello,
How have you been getting along? Not sure if I remember correctly but I thought you had your 1,000mg of Keppra increased to 4,000mg, is that right? If so is it working or are you still having seizures and if so how often. Are you seeing a Neurologist? It would be very helpful if you could share what type of seizures you’re having and when. I mean are you having them during the day or do you have them at night when you’re sleeping. One reason I’m curious is if you’re having them at night is the possibility they may be tonic seizures, although people don’t normally lose consciousness although it can happen. I thought you said that you lost consciousness. If you have any specific questions please feel free to ask although I don’t guarantee I’ll know the answer.
Jake

1 day ago · Experiences with Clobazan (SYMPAZAN)? in Epilepsy & Seizures

@pamelastewart5
Hello,
I’m very sorry to learn the Epidiolex is not as helpful for Caleb as hoped. Has the neurologist mentioned why this isn’t as helpful as the medical marijuana? Have you noticed that his seizures are any less severe than before starting the Epidiolex?
I believe he’s been on it nearly 8 months. What is his dose now?
Jake

Nov 3, 2019 · Having Seizures and Need Input in Epilepsy & Seizures

@1964chevyz
Hi there,
What type of seizures do you have. How often do they occur? What medication are you on?.
Can you explain what happens before during & after? The more specific the details the better.
Jake

2 days ago · S.U.D.E.P. Sudden Unexpected Death in Epilepsy in Epilepsy & Seizures

@lisalucier
Fortunately I have been spared witnessing seeing it actually occur in person. Julie and her husband Jon parents of Hazel, the 17-year-old girl above and I were very good friends although we never met in person, we frequently communicated and we were on the same forum before it was closed down after about 15 or more years.
I can understand a little bit about how horrible it must’ve been for Julie to find her daughter in bed deceased since the same thing happened to me but with my mom. But I guess it’s a lot different when a mother finds their child.
I knew a man who lived in Arkansas and we had plans to meet in 2009. I had all my travel plans made and was just waiting for my travel date and I got a telephone call from his son. He had just died. It’s not clear if the cause was S.U.D.E.P. or if it was Convulsive Status Epilepticus. What rips my heart out is that his grandson had just been born and when he got old enough he called me up one day and he said “Will you tell me about my grandpa.” He’s 10 years old now and it still tears me up when he calls. I asked the forum powers that be if we could have a Memorial section, they agreed and I wrote a tribute for Michael and a couple of others. You’re so right Lisa, it is heartbreaking i’m so concerned about Julie who still has intractable epilepsy with frequent 20 minute seizures. Because of all of her risk factors she could also suffer the same fate as her daughter.
Thank you for your contribution Lisa,
Jake fortunately I have experience with seeing it