Seeking help

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Seeking help



It took me 34 years to seek help, mostly because I was scared to death of being locked up in a straight jacket... I have tried to explain what happens to me to my closest family and friends and the only thing they, and I, could come up with was I was psychic... I have a lot of activity in my sleep which usually messes up my entire next day.. but my seizures revolve around deja vu, and for me it felt like when these episodes happened that I had 'dreamt' them the night before, everything that would happen. So, ok, I was psychic I guess....but it didn't add up. In the summer of 2011 after a long break from my seizures they hit again, and hit HARD. I was a stay at home mom, struggling with different relationships and just trying to be the best mom I could be, alone. They come in clusters, but I still didn't know they were seizures at that time.. Up until then I would research day and night trying to find out what was happening to me, but using the wrong words.. Usually something like 'vivid psychic dreams' or 'dreaming the next day', I just wasn't getting the right information from that. It was in that summer that I finally found something.... I was very scared and knew I was going to have an awful time trying to tend to my kids in this state... but I was also just as scared to go seek help. I had searched for 'horrible deja vu attacks' because that's exactly what they feel like to me and how I've described them for so many years. And finally I found something. Seizures? No way.. In my 34 years I had never considered that... aren't seizures when someone falls down and starts flopping around?? I don't do that! But the more I read, the more everything started making sense... simple and complex partial seizures. The searches kept going back to Temporal lobe epilepsy no matter what I did, I didn't really want to beleive I had epilepsy, but no matter what I did, I kept going back to that every single time. I wasn't going to settle though, and definitely wasn't going to diagnose myself, but I was going to research as much as possible on EVERY subject before I head out to the doctors. All my life I kind of worried if I was insane.. if the insanity would just come on every now and then..I would know it wasn't right, it was wrong, and I just wanted to get back to reality, but something definitely WAS wrong and I really did think I might be crazy... So I researched as many mental disorders as possible, and looked into things like dissociative disorder and such. I explored schizophrenia as well as many other things...and nothing 'fit' like these partial seizures/temporal lobe epilepsy.. So I risked it eventually going to my doctor with this, stating to him 'I think I might be having seizures....'..bracing myself for the straight jacket.. I should also state that at this time I had definiteley realized something was worse, the seizures hadn't stopped.. I usually get the clusters starting off really bad for the first day, then the second day is easier, and usually it's over with and I go back to normal after then.. but this time it continued on without stopping, every single day. Something was different.. My doctor didn't look at me as if i was crazy, he had me describe my attacks to him and that is HARD for me to do, to put that into words...it's been nearly impossible all my life.. I did my best though and he took me seriously, making an appointment for me to get an EEG. I was stunned.. This was the best part of the process anyway.. Before this I had gone to the ER a few times, with a massive headache that just wouldn't go away, after a major cluster, still not really knowing what was wrong with me. They told me I was 'hyperventilating'!!! And I was sent to a psychologist. So yea I had good reason to fear going to doctors.. I was not hyperventilating when one of these attacks would come on...but I went to that psychologist anyways for a while to see what he would say. He was very uncomfortable to be around, the room was always tense, and he would just try and find something in my childhood to blame these attacks on, stating I was most likely having pseudo seizures, non epileptic seizures, without me even seeing a neurologist first... Anyways my family doctor got me going in the right direction after getting very confused from my ER visits and visits to this psychologist.. Unfortunately though my first 2 EEG's came out normal, and I went in feeling just fine too, no attacks at all... Then I had a sleep deprived EEG which was also normal I guess, but I wasn't having any activity then either.. I was getting very discouraged.. Then after waiting 9 whole months, I finally see a neurologist! I had been put on Carbamazepine though to see if the attacks would stop or at least slow down while I waited to see the neuro, my family doc wanted to test it to see if I was actually having seizures or not and said the meds would not work if these were not real seizures. Within two days I felt different and the seizures were very, very different. Quicker and less intense. So when I saw my neuro and I told him about my crazy attacks, and how I was still terrified of being crazy...he told me he heard me story every day, and it did sound like seizures. I nearly cried and hugged him. He didn't think I was crazy!!!!!!! He ordered another sleep deprived EEG and an MRI that I would have to wait another numerous months for..but I was happy. He told me to take more carbamazepine too and that I wasn't taking enough. I explained to him everything starts in my sleep, and the meds were irritating my sleep more...but I put my dose up anyways. I waited for my next EEG hoping I'd be having activity that time, and this time I did have some activity, although as I'm writing this I still don't have the results..but I guess it was at this point when my neuro wrote to my family doctor stating I most likely have temporal lobe epilepsy.. WHAT!!? Back in the summer of 2011 I kept coming across websites about temporal lobe epilepsy..when searching my symptoms.. Could that really be it? Epilepsy??? I was still struggling with my sleep, my 'dreams' were worse..These wierd 'vivid dreams' were worse and would make me have many seizures the next day. I would dream like this my entire life, I remember having them when I was maybe 2..But the seizures didn't come out in the day until I was turning into a teenager, if I remember correctly. I've stayed on my meds though as they have toned down the severity of my seizures during the day tremendously. And that's good. I've just had my MRI and am awaiting the results from that. I want them to see something, to find a reason, a cause...because sometimes I still believe I'm crazy....And that scares me. My doctor has been stating I have epilepsy for months now...and it still hasn't sunk in..I think I need more proof...did my last sleep deprived EEG show something? Why hasn't anyone told me yet? But, ok, I've gotten far with this..so far...it's been a year now..too long in my opinion, way too long, but if it takes time to find the REAL problem then so be it.. I just don't want to be diagnosed with something that is wrong, like um.........hyperventilating.... : It's been a year and once I get the results from the MRI I'll know more I hope, or not...but I do believe my diagnosis has already been made by my neuro, I just have to wait another 34 years till it sinks in!!!!!



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pray

May 17, 2013 - 2:10 PM by jenel m

Jenna, Thanks for posting. This is a great start and no you are not Crazy. I have a daughter that has seizures and we have found alot of support for her from our local community. h360 is also a way to see what "will" happen. Thank you again for this story and for my daughters sake, please keep them coming.

Aug 31, 2012 - 9:37 AM by Timothy F

Jenna - thank you so much for your story. I think you have answered your own question -- You're NOT crazy. The mind has a funny way of playing games with us but you have to trust the medical professionals who are caring for you - Not to mention doing your own research. I hope you realize that by sharing your story with healtheo360, you will be helping a lot of people like you who are just "doing their reach". Trust your medical professionals, do a lot of your own research, and DONT wait another 34 years to let it Sink In! Please keep us informed and keep sharing more of your story. Be Well - Dave

Aug 30, 2012 - 7:34 PM by David D

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