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Weird seizures

Just wanted to share my story. About 11 years ago my husband and I were working outside. Being a Nurse I knew to stay well hydrated and rest. Anyway after the second day of working outside in August I experienced crazy feelings in my head. You know the text book symptom of high blood pressure feels like a band is tightening around your forehead, well I had a feeling of my forehead being pulled outward and electrical type feelings running from the back of my neck to the top of my head and my blood pressure shot sky high. I honestly thought I had a heat stroke. I was working in Physical Rehab at the time and the Doctor on the unit thought I might have had precursors to a heat stroke. My medical Doctor said it's just high blood pressure but he did an MRI of my head to pacify me. Well all the blood pressure medicine he put me on didn't work the MRI was ok. After a while of me continuing to complain he referred me to a Neurologist, this guy was a joke. He repeated the MRI which was ok and told me quote, "I see several patients like you each year, this is some strange phenomenon and I have followed those patients for 20 years and they are doing fine." end quote. Well time went on I stopped the blood pressure medication my head was no better and my Doctor had really convinced me it was anxiety/stress due to my job, as I was Director of Nursing of our Physical Rehabilitation in the hospital. I wasn't sleeping it seemed like my brain would not shut down. I slept maybe 2 hours a night. Over time my Doctor gave me Ativan to sleep and yep it worked for maybe 3-4 hours. Anyway as time went on the head thing still there and my dose of Ativan had increased to 2 mg at bedtime and another 2 mg if needed during the day. I had lost about 35 pounds and thought I was dying. So I retired from my job at 59 1/2 years old because I sure didn't want to die at work. I knew something was wrong and I knew I should seek help elsewhere but when there are insurance issues, well there ya go. Six months later I'm still on Ativan and sleeping 4 hours a night, I decided to go back to work part-time. In the mean time I had carpal tunnel surgery on my wrist a couple months a part, brain never shut down medication didn't work for surgery I felt the incision everything. I saw a different Neurologist for my EEG's for my carpal tunnel surgery. Well feelings still going crazy in my head and I start smelling crazy smells no one else smells. Two nights in a row I woke up and it smelled as if my head was in a bowl of moth balls (for you older folks that know what moth balls are.) and a few weeks later I was at work and was in the hallway in the Doctors office I work for and had to grab the wall as it felt like someone flipped a switch in my head for only a second. Well with a lot of coaxing and pleading I was able to see the Neurologist that did the EEG for my Carpal Tunnel as he was in the same office as the first Neurologist I saw. So he checked my smell it's ok, repeated the MRI it's ok and set me up for a EEG of my brain. The day I had the EEG he called me at worked and asked if I had ever had a convulsion, I said no I think I would know. He said during the entire length of the EEG there was not one second I was not having a seizure. He said I will let you continue to drive since you have never had a convulsion but I need you to go now and pick up your prescription. It was Keppra it had to be increased twice but thank GOD Almighty my weird feelings in my head have stopped. Well there are times I can feel it a little if I'm working late and I don't have my medication with me. Moral of this story, we know our bodies, when something feels wrong seek out help until you get answers. Me being a Nurse you would think I would know better. But I too thought it might be stress related to my job. I didn't re-read this so I hope it is not confusing. In speaking with my cousins after I was diagnosed I discovered that all the girls in my family, REDHEADED girls have seizures. My parents died when I was young so I couldn't ask them, this is all my cousins on my Mom's side. They range in age from infant to in their 60's. Most were younger when diagnosed, I was 54 when symptoms started and 60 when officially diagnosed.... Odd


WOW, Incredible story!  As an

WOW, Incredible story!  As an epilepsy community we teach about seizures, symptoms, and treatments but we don't  talk too much about better ways to manage effective relationships with our doctors.  What should we do when we don't agree?  How far should we push our opinion and when do we give in and allow doctor to make the decisions?  I'm thankful for Epilepsy Foundation which helped educate me so I could confidently say, "no" to two different brain surgeons last year who proposed resection of tissue from right temporal lobe.  The second surgeon was wonderful and agreed to my reasonable option to have the RNS unit implanted.  Now we are treating seizures only on my left.  I appreciate and respect the doctors but we must work as a team.  Thanks for sharing,Mike

Hi, Thank you for sharing

Hi, Thank you for sharing your story, it sounds like you've been through a lot. It can be challenging to find a healthcare team that you're comfortable working with, as Michael shared with his experiences dealing with different doctors. We are so glad that you were able to advocate for yourself and pushed to find the answers you needed. We are also glad to hear that you’re neurologist is working together with you and was able to provide you with an accurate diagnosis and individual treatment plan that works well for you. It's important that those who feel they cannot speak openly with their  healthcare team about their health and daily life, or feel they aren’t working towards the same goals, considering seeking out second opinion.  ,or consider finding more specialized care for epilepsy by seeing an epilepsy specialist, (epileptologist) at a comprehensive epilepsy center. You may want to consider keeping a journal or diary. My Seizure Diary: a great tool for identifying & tracking seizures, setting reminders,managing medications & side effects, recording medical history, moods, behaviors, triggers, and other therapies or personal experiences, that may affect seizures and wellness, which can be shared with your healthcare team. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or ,or contact your local Epilepsy Foundation: , to find support groups, events and programs in your community.

Seizure free for nine years! 

Seizure free for nine years!  Stay positive!  

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