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First seizures, epilepsy or something else?

I recently had two seizures over the past several weeks, at the age of 31 with no previous ones that I am aware of. The first time I had to have stitches due to it causing a head injury, but the doctors were under the impression it was a one-off episode, or perhaps even just a faint that produced seizure-like symptoms due to the fall. However I had a second seizure about two weeks later. I'm going to have further neurological tests to diagnose, but the earliest appointment will be at least two weeks away. In the meantime, I'm afraid to do too much in case I have another one.

I just wanted to explain what happened both times and other info that might be important, in case anyone can confirm if it sounds like epilepsy or something else. Here's some bullet points:

- Both seizures began the same way without much warning: I suddenly feel dizzy, more specifically as if I'm being forcibly turned around to the right while unable to fight against it. A few seconds later I lose consciousness. Other than some disorientation and physical injuries or abrasions, there doesn't appear to be any lasting effect when I come to.
- The first seizure happened when getting out of the shower at about 8pm and I was found by family members. They described me as having convulsions and eyes rolling up into my head. When I came to I had an injury on my left brow from the fall.
- The second seizure happened several days ago in bed at 5/6am as I was struggling to get to sleep. No-one was there to witness it, but when I came to I saw that my bed covers had been dropped on the floor and I had multiple bruises and scrapes on the right side of my nose bridge, ear and neck.
- After the first seizure I had blood tests which all came back fine except for low phosphate levels. I took supplements for it and a blood test I had prior to the second seizure showed my phosphate was now fine.
- My doctor found a visible blood vessel in my right ear after the second seizure, which she chalked up to my injuries from my convulsions.
- On both occasions of the seizures, I had previously had trouble sleeping and ended up sleeping in and missing out on meals, although if my blood tests were fine I'm not sure that would factor in.

If there are any other details that might help to know, please let me know. I realise expecting a diagnosis based just on these descriptions is silly, but I'd feel reassured knowing honestly if these symptoms don't sound serious or if others have had similar experiences. Thanks!


Everyone’s experience is

Everyone’s experience is different and we are not able to tell you what you are experiencing is a seizure, however what you describe does sound serious and you are definitely taking the appropriate steps. If a routine EEG doesn’t reveal any epilepitiform abnormalities, at some point a long term such as a 7 day video EEG (VEEG) may be in order to determine what kind of events you may be having (seizures v. non-epileptic events). Doctors often look at CT or MRI as well, but in my experience they rely on EEG the most for diagnosis. I don’t think your descriptions are “silly” and I think you’ve done a good job explaining what you’ve experienced. You do seem convinced that it’s a seizure though and I would caution you in using that kind of language with doctors because while it may be a seizure...until you’ve been diagnosed, it can affect the way they treat you. I’ve had the full spectrum of seizures from focal aware, myoclonic, focal impaired awareness, and even tonic-clonic that resulted in cardiac arrest in the 19 years that I’ve had epilepsy. But, I’m still amazed at how different other people’s experiences are when they describe what a seizure “feels” like for them and many doctors don’t understand until they “see” it on an EEG. Epilepsy specialists love VEEGs which is why I say it may even have to come to that for you some day too. I wish you the best as you search for answers! In the meantime, you should probably avoid driving. I’m sure an employee from Epilepsy Foundation will be responding to you this week with some more tips. 

Hi Kmcdo,Thanks so much for

Hi Kmcdo,Thanks so much for posting, we understand this can be very scary and confusing to experience. We cannot determine if you have epilepsy, or not so it’s important that you continue to follow-up with your healthcare team to describe these episodes you’ve been experiencing. Additionally, it’s important that you discuss any changes in moods, behaviors, sides effects & symptoms, to determine what individual treatment plan is best for you. assistance and information regarding finding a specialist, or a second opinion please visit:  Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors'visits, and how to take control of seizures. Learn more here: Seizures can take on many different forms and affect different people in different ways. For additional information more about seizures & safety here:  As Gianna mentioned in her comment, you’ve done a great job at describing what you’ve experienced, which is helpful information for your doctors to have. My Seizure Diary: a great tool for not only tracking seizures, but recording medical history, medications, side effects, moods, behaviors & triggers, which can be shared with your healthcare team. My Seizure Diary also helps you remember what to do- you can have reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests. Additionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, where a trained information specialist can connect you to resources, provide referrals and additional  

Gianna expressed it nicely

Gianna expressed it nicely that patients need to be careful with the "kind of language" and manners they use with doctors "because while it may be a seizure...until you’ve been diagnosed, it can affect the way they treat you."  Cultivating a quality doctor relationship can take practice is a lot to ask for new patients who face the stress and complications of the new epilepsy diagnosis.  Doctors have different skills, temperaments and personalities.  The Epilepsy Foundation provides good support at their toolbox kit  This site gives information about managing the doctor relationship.  But it isn't always easy to determine the level of power the doctor wants to hold.  I like to ease in to my new doctor relation and be a little more relaxed about taking control of my treatment for a short time.  I've tried more than a dozen medications for seizures.  When I see a new epilepsy specialist I make it clear how many I've tried and that I do not wish to try any more.  But if this new doctor is determined to have me sample one more pill than I don't fight this first one.  It's important to establish that good doctor / patient relationship before I demand seizure control and control over my treatment.  

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