Community Forum Archive

Uncontrollable diagnosis

Tue, 08/20/2019 - 22:50
My name is Nate and I'm a 19 year old male. Since about the age of 18 months old I have been having episode like instances where my adopted parents had thought were grand mal seizures. I would get overly heated or upset and have episodes that would cause my blood vessels in my brain to construct not allowing blood to get to my brain or oxygen. After getting testing done at Pittsburgh Children's Hospital they decided and diagnosed me with VasoVagal Syncope. I was put on a salt pill for the past 17 years until I joined the military where I was taken off of it so I could join. After getting medically discharged due to injuring my shoulder I had stayed off of the medication and was doing fine until March of 2019. I started having multiple episodes of vigorous shaking and migraines, nausea, vommiting, confusion, and loss of memory. They also seem to cause speech problems and have made me clumsy. The doctors finally put me on Depakote which wasn't working and just seemed to make me aggressive and have horrible judgement calls. While in Ohio for job training, I had another seizure while taking depakote and was DOA on arrival at the hospital with 135/120 and a heart rate of 110. The doctors then took me off Depakote saying that my kidneys weren't processing it and put me on Keppra. I've been on Keppra for about 2 months now and started out at 2 pills a day, then up to 3.5 pills a day and I still seem to be having seizures and they're getting more frequent and severe. My speech has seemed to get worse and so has my clumsiness and confusion/loss of memory. The doctors thought it could be migraines causing Aura seizures and gave me Sumpatriptin nasal spray to take when a migraine comes on to see if it'll help but I still continue to have seizures after using the medicine. Triggers seem to be tiredness, confusion, injury to my head, migraines, stress, temperature in a room. Whenever tests are done the doctors can't seem to find anything wrong physically except they can physically see me have one and are baffled.. its ruined my last relationship and is causing strains on employment and the people around me. Please help if you have any suggestions, I don't know what to do.

Comments

Hi Natelee_c,Thanks so much

Submitted by Anonymous on Wed, 2019-08-21 - 15:07
Hi Natelee_c,Thanks so much for sharing your story. We understand this can be very scary and upsetting to experience. We cannot determine what is causing your seizures, so it’s very important that you all continue to follow-up with your healthcare team to determine what treatment is best and to discuss any changes in seizure types,frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf For assistance finding an epilepsy specialist near you, or for a second opinion, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist www.naec-epilepsy.org https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions You may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about epilepsy, what resources are available, how to make the most of doctors' visits, and how to take control of seizures & find self-management tools. Learn more, by visiting:  https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy Seizures can take on many different forms and affect different people in different ways.Learn more about triggers and seizures here: https://www.epilepsy.com/learn/triggers-seizureshttps://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizureFor more information regarding Keppra and side effects,visit:https://www.epilepsy.com/medications/levetiracetamhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects It is common for those living with epilepsy to report having difficulties with thinking, memory &attention. Learn more about challenges with Epilepsy here:https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory  https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-101/epilepsy-and-adhdLearn more about employmentchallenges, here:https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-know One of the most important things to help you live with epilepsy is to find a support network.Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   The Wellness Institute:  epilepsy.com/wellness   ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools Additionally, you may want to consider with your doctor having a device that can help track seizures, by visiting:  https://www.dannydid.org/ and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication& other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your providers. https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf

Hey Nate. I’m Maddie, a

Submitted by MaddiePiano on Tue, 2019-12-17 - 20:01
Hey Nate. I’m Maddie, a senior in high school. I’m sorry that you had to deal with Epilepsy out of the blue and that the seizures were so intense. That must have been really scary. You may want to ask your neurologist about minor surgeries if you haven’t done so already. Epilepsy really sucks :( I have controlled GTCs, partial seizures, and really small ones daily. They can’t figure out the small ones and none of the medications are helping. 

Join Our Newsletter

Stay up to date with the latest epilepsy news and stories from the community.