Knock knock

[Lucia]

Hi everyone .

I hope I'm introducing myself in the right section, still trying to find my way around the forum.

Been suffering from more types of seizures than I can name for 20+ years (I'm 29 btw), sadly have been misdiagnosed until recently when a doctor witnessed a series of short seizures and did an EEG and MRI. Have also had several cluster episodes in the past, left untreated so I'm sporting quite a lot of brain damage from that. I feel really embarrassed saying this, and resentful of docs who kept sending me home as a bad case of hysteria for years.
It appears my neuroborreliosis is causing the seizures although I have had febrile seizures as a child too so I'm not sure what caused it, I'm also not sure whether it's common to have this many different types, my docs are still unsure as to what type of epilepsy it is, having different parts of my brain affected but it appears that not all my lesions are focal points of seizures.

I've done a lot of research on the topic but there are still things about my condition and experiences that I haven't been able to find an explanation to so I'm hoping maybe I can find some answers here.

My friends and family are not very understanding about the disease and I still get scolded for absence seizures or having myoclonic and simple and complex partial ones, it's aggravating because they don't understand I'm not being difficult but can't help it. I'm expected to put up with crowded, loud and visually stimulating environments such as malls or cafes even though they trigger seizures with me, not to mention loud tv, radio and whatnot, I even get forced to wake up and function as if nothing is wrong when I fall into a deep sleep after a seizure. I'm sorry this sounds like such a pity party but this ignorance in my environment is really depressing and I'm desperate to just be around people who know and understand that this is out of my control.

I guess I'll have a good look around the forum before I post a new topic and ask away later on if I have any remaining questions.

I wish everyone of you relief and successful treatment from the bottom of my heart, stay strong everyone :hugs:

 

[Fedup]

Lucia

Thank you for the well wish's and I wish you well also, yes have a look around and we will try and help as you help us.

 

[Bidwell]

Lucia, Welcome. This forum has so much good information coming from great people that I am 99% certain you will find what you need, especially if you stay a while. In the meantime, my very best wishes.

 

[Cint]

Hi Lucia and welcome to CWE,

So sorry to hear of your ordeal. No need to feel embarrassed of resenting doctors for making the wrong diagnosis. Many feel that way. I know I do. I was suffering from CPs and ended up having a BIG TC seizure with a serious injury and ended up in the hospital for 2 months. But then that's a whole 'nother story. I ended up having SP, CP and TC seizures and trying many meds to control them. And mine started when I was 23 years old, out of the blue. My family had NO clue what to do, and some still don't, despite everything I have told them. The ignorance of others can be and is very depressing, but keep on trying to educate your family/friends about epilepsy and the different types of seizures. I finally had to leave my husband because he "didn't get it" when it came to understanding the things I could do and couldn't do, like you mentioned. You have to draw the line eventually.

Show them this website:
http://www.epilepsy.com/learn/types-seizures

 

[Lucia]

Thank you everyone .

I've read quite a few threads here and will keep reading, I do come across helpful andor relatable things.

So many people have complex causes or complications and the way seizures are perceived by many certainly doesn't help.

I'm hoping those who do stick around us epileptic friends and loved ones and show interest and support will perhaps spare themselves and others possible complications by learning to recognize telltale signs of seizures.

I'm sorry to hear about what fellow sufferers go through but judging by this forum at least you still have a great spirit, sense of humor and a great attitude!

It's nice to be here

 

[valeriedl]

Finding the right dr most frustrating thing in the world but it is the only and best thing to do in order to find the help that you need. I've had to do this for other medical issues that I've had and I wanted to pull my hair out, I'm actually surprised that I didn't!

Luckily the very first epilepsy dr I had was great. Everything showed up on the test that he did, plus I was seizing extremely bad when I went into the er, so they knew I had epilepsy right from the start.

I had to change drs a few years later because my first one moved. The second one, who I am still seeing, is wonderful too. Both listened to everything that I said and we worked with each other in trying to find a solution. I would see my second neuro's nurse practitioner every so often and she was the worse woman in the word. All she would tell me that I wasn't taking my meds, which I do religiously and on time. She told me that if I'd start taking my meds then I'd stop having seizures. I blew up in the office and haven't seen her since.

 

[Nakamova]

Hi Lucia, welcome to CWE!

I hope you can enlist your doctors in educating those around you about epilepsy. Your family and friends should be made aware of the toll that seziures can take on the brain, and of the need to be proactive in identifying and avoiding seizure triggers (such as crowds, noise, fatigue, etc.). The people who truly support you should help protect you from the environmental stressors that do you harm.

In the meantime, I hope you can take comfort from the CWE community; it's a great source for empathy and advice.

Best,
Nakamova