Epilepsy

This is actually Waterlily but no matter what email I sign on with, I can't get to my personal account moniker.

Hypogammaglobulinemia describes low levels of immunoglobulins in your body. Immunoglobulins are antibodies that fight germs like viruses and bacteria that can make you sick. Having low levels may increase your risk of infections and other diseases. Antibiotics, immunoglobulin replacement therapy and stem cell transplant are potential treatments. I get Chemical Asceptic Meningitis whenever I get an IVIG Infusion. I have very low IgG1 and IgA's in my blood. That in turn creates almost untreatable Pneumonia, Bronchiectasis, cancer, and organ failures. There are only two immunologists in Minnesota. Fairview University of Minnesota and Plymouth Minnesota. I got IVIG infusions for years without issue and then one day I started getting Chemical Asceptic Meningitis within a day or two of IVIG administration. After not taking any for 5-6 years, I tried it again. The first infusion went well except for a little headache. The second required emergency hospitalization because it causes the lining on my brain to swell and then I go downhill fast. This information doesn't always make it to the doctor's attending me from the emergency room. I have to wait to talk to the doctors directly and at that point I can barely speak. I can only go to one hospital for that reaction, and there's only a couple doctor's there that know how to treat it. It starts with a lumbar puncture to test the spinal fluid. I think that they test for high white blood cells and other information. So far I've healed with their assistance. One of these times I won't be as lucky. I am off any type of IVIG Infusions now, but I know I will need to get IVIG Infusions again when I get too many infections and, organ failures or cancer. I've also had a hard life from childhood on up. Almost my entire family struggles with mental health issues. My mom had lupus as I do. A Rheumatologist told me it was inherited. I have a daughter with some early symptoms that I've been keeping my eye on. I will help guide whenever I feel I have knowledge that might help. Bless all your hearts through your struggles. I'm currently in the hospital healing from a bilateral L4-5 decompression lumber spine surgery. I have a wonderful care team and my daughter is here when she is able. She's carrying a 4.0 in college and I'm so proud of her. She has 3 types of epilepsy. Finally she found an Epilepsy doctor who knew exactly what medicines she needed to control them. She occasionally has break through mild seizures, but shes finally able to function. She had a stroke last month at 51 years of age and was temporarily paralyzed. Our lives are a journey. That is how we look at ours. It helps immensely. This is an informational post in case someone can use this information. I'm here while recovering from surgery. Feel free to reach out any time. It may take me a little while to reply, but I will do my best. Bless you all on your life journeys. #Hypogammaglobulinemia #Epilepsy #Stroke #Immunedisorders

I’ve got drug resistant Epilepsy and I had brain surgery five years ago (I still continue to have seizures as it was in two areas). Anyway, a few days ago I started to experience pain in my face and right hand. For the past year I have had swollen feet (I’ve gone up a shoe size) and it really hurts to walk on them so much!! I was told by the pharmacist to put ibuprofen gel for the pain which has helped a bit and to call my consultant tomorrow morning to speak to a doctor sooner (as one of my anti-convulsants may causing the swelling). Get my bloods done quicker.
I just feel so uncomfortable it hurts and when I spoke to my Gp a few days ago she said she would run a few blood tests to look into why my feet were so swollen.
There is Epilepsy and Arthritis in a few of my generations (my mum and nan both had these conditions)
I’m just really worried!
#Epilepsy
#Arthritis
#MentalHealth

Hi, my name is Dutchie. I'm looking for some socialising since no one in my own network is known with PTSD nor Epilepsy. They all care for me but they really don’t understand how it feels to live with PTSD, so just looking for people who can relate to those feels and are willing to maybe talk about it?

#MightyTogether #PTSD

Hi, my name is vetella09.

#MightyTogether #Anxiety #Depression #BorderlinePersonalityDisorder #PTSD #OCD #Grief #ehlers-DanlosSyndrome #Gastroparesis #PosturalOrthostaticTachycardiaSyndrome #cyclicalvomitingsyndrome #pcos #slowtransitconstipation #Epilepsy #Asthma #ChronicPain

Hi, my name Nicole. I was diagnosed with Focal Impaired Awareness Epilepsy approx. 8 years ago. When I first got diagnosed with epilepsy, the doctors were aware that I would talk, walk and do things that I was unaware of and could not recall anything later. Some of these things were videoed taped by my husband. However, it wasn't until recent that a specialist told us that it was the postictal period, after the seizure where these episodes were happening. The seizure only last two minutes but the postictal goes on after the seizure. My seizures take approx. 30 to 45 min from beginning to end. My husband will start recording when he sees the seizure starting and then starts talking to me. When he finally believes the response sounds current, we know that I am coming out of the seizure. So....I say all of this to ask is anyone else struggling with this and what do you do, or what has your doctor prescribed.

#MightyTogether

Hi, my name is jkenniv. I'm here because my daughter, age 4, has cerebral palsy, epilepsy, and is developmentally delayed and I want to learn more about how best to care for her and provide her with the tools she needs to succeed and thrive in life.

#MightyTogether

I do a soup run with my church once a month but due to my social anxiety and psychosis I didn’t do it for six months as i obviously couldn’t leave the house and it took me a while before I was on the rota again. Tonight I was with the group and handing out the food and suddenly a homeless guy comes up to me and says he has ADHD and mild autism and can smell my anxiety a mile off and that I’m doing great and I just need to breathe! I must’ve been more nervous than I thought about doing it!
That was very nice of him! I’ve often wondered whether I have autism though- my mum said I used to have meltdowns as I child and bash my head etc and I still get them now! I’m in my early 40s!
Funnily enough my best friend has just been diagnosed with it, which is a bit strange. She doesn’t have any of the signs.
I have a fascination with numbers too! I’m obsessed with religious life (I was nearly a nun but left and I still go on retreats now!)
I haven’t brought it up with my doctors though- do you think I should?
#Anxiety
#Depression
#Epilepsy
#AutismSpectrumDisorder