I am just new to this board and was recommended by a dr to start looking for information on the net about seizures. I am basically clueless about it all so if anyone is able to help, advice or anything it would be greatly appreciated
Here is my story anyway
I have recently been diagnosed with Lupus and psuedoseizures (the seizures were first diagnosed as simple partial ones then 'upgraded' to complex partial, then too psuedoseizures until further testing). My Rheumatologist thinks the Lupus is causing the seizures but no one else seems to agree.
Basically i am 25 i only started getting seizures about 6 months ago before that i have never had one. My first one was the right side of mouth twitching into a half smile and my right foot spasming which lasted a total 30 seconds or something. I have had probably 20 now and they have just gotten worse. I had two 4 days ago which first started off with me drooling out the right side of my mouth, then my thumb on my right hand spasmed and then that is when my head continually jerks to the right side, they do get to the point in which they stop me breathing and i turn purple, i do usually end up getting bagged when i am at hospital. I never lose consciousness (i have come close to passing out from holding my breath though), i don't bite my tounge and i don't wee myself or anything. i will either just start crying or i get angry. The seizures go in blocks so i will seize up for at the most 2-3 minutes and then it will stop for a few minutes and then go again, this goes on for awhile as for how long no idea as i am usually taken to hospital and injected usually with midazolam which stops them but usually they have been going for an hour by that time. It takes me 2 days to start feeling like myself again. After the one i had 4 days ago i was slurring my words for 2 days and was exhausted. I am currently on clonazapam everyday.
I get an auroa before i get a seizure, which can go from completely losing all my energy and having to lay/sit down, funny taste in my mouth, funny smell, i'll just start rubbing my eyes or start picking at my lips. I also don't have a trigger.
I have had 2 EEG's done, both showed nothing but in the second one the things kept falling off my head, i have had an MRI showed nothing, seen a psychologist which couldn't define any factors that would cause it.
I am continually told i can control psuedoseizures which sometimes i actually am able to but they are no where near like the ones i get that stop me breathing. If i knew how to stop them i would!! at the moment i would rather stay home and pass out from not being able to breathe then go to hospital and be treated like a hyprocondriac. I don't care what it is, i just want to know how to stop it! And not be mocked
My GP has referred me to a private neurologist for consultation and a 7 day/sleeping EEG is being looked at aswell as i haven't had that done yet....
As i said i am clueless the dr's are being less then helpful so any help or advice would be greatly appreciated
The following user gives a hug of support to ACCE0306: siezurdontrulme (06-14-2011)
Hi ACCE0306 , I have been dealing with Psycogenic aka pseudo seizures for the past 3 years. here are my symptoms that happens in order. I get extremely tired out of no where, very dizzy, everything gets blurry,my heart feels like its going to jump out of chest I get cold from the inside out. I go into what they call stare off seizures. Next thing I know I wake up on floor or in my moms lap, or husband. and I am in alot of pain. then I am told I had a seizure, doctors and family conclude the same details, That my entire body goes into convulsions, my spine is arched. My pupils get extremely big. some times I druel. when coming out of the convulsion seizure I end up going into stare offs and see colors some times. Seizures are different in different people. I have had over500 seizures in the past 3 years. Some times even back to back.
When I first started out. I was in high school and misdiagnosed with Hypoglycemia. It has been a long process on March 17,2008 I was working at a Christian organization. I did the interior decor for the store. I alwayz felt like i needed to go go go. My mind would go 100-1000mph still thinking it was hypoglycemia I was eating as if I was. Checking my blood all that good stuff. I started getting the weird feelings only this time worse then normal. I ended up calling my mom telling her I didnt feel right. People were making me drink orange juice, eating. then I became incoherent and I woke up to the paramedics putting oxygen on me. The paramedics asked my mom does she ever do anything for attention? Im sure you may have been asked this too. Alot of people with this "disease" end up being treated as if your faking. well definitely it is not and was not the case. I was told it was my first convulsion seizure this seizure last for 45mins! it was NOT a good day. I was taken to the hospital by ambulance where I had 2 more seizures then at the hospital the treated me like I was faking , or trying to get attention. They ended up monitoring me . In the hospital I had another seizure. They ended up having to use Lorazepam to get me to come out of it. Then they did everything from blood to cat-scans, and MRI's, neurologists heart monitor, etc. Then they sent in a Psychologist that was cocky asking me if I did drugs if I was sure i didn't do drugs or drink. then he saw the test showed NO i Dont. Then he told me that He thinks I need to go see another Psychologist, so they referred me to Dr.Khan which is an amazing Psychologist, He then did a whole lot of tests finally after all the test through the years. He asked me do I ever feel or nervous or feel like I worry more then I should? my answer= YES and then he asked me about the different symptoms. He then said He wanted to do more tests more neurologists cat scans,etc EKG, EEG'S etc. so we did. So he finally ruled out epilepsy, grandmal, and found out it was Psycogenic /aka Pseudo seizures which is brought on through anxiety and stress. I was diagnosed with GAD as well Generalized anxiety disorder and panic disorder. Dr.Khan ended up prescribing me Lorazepam 1.5mg, and Paxil 20 mg, He also sent me to therapy. since then as to present I have decreased to 10mg of Paxil and the lorazipam is still the same. I recently went 3 months seizure free. However I was told traumatic experiences that you have suppressed can cause it. I was like Im not hiding anything! I Dont hold on to the past. However I learned that I did... I blocked some past situations out so I wouldn't have to think about them.. then I learned apparently lol that's a bad Idea... It can be something as little to your dad yelled at you when you were little. to watching someone die in front of you. It comes from your subconscious. The way my therapist described it to me is your subconscious is kind of like a kid part of the brain, and it stores stuff like from your childhood, and traumatic experiences, anxiety,etc So I learned that my seizures are brought on through stress and anxiety. I do feel re-leaved after I talk to my therapist and get stuff off my chest. What the therapist does is not only listen, but also teaches techniques to help you with your anxiety and your seizures. I tried to tell them im not stressed out what do i have to worry about? apparently lol i was wrong. However a VERY IMPORTANT THING my doctor told me is that NO YOU can NOT CONTROL YOUR SEIZURES YOU CAN NOT FORCE IT TO HAPPEN. I also asked him If It was all in my head. He said No and yes lol
I said so .. does this mean I am crazy? He said NO YOUR not crazy lol. No its not in my head like im not making it up. But yes it is things in your mind that is causing it to happen. Even though you dont mean to or try to. I have learned through my therapist to if I am feeling like I am going to have a seizure to Lay down. Then take a deep breath in and out. to slow my heart. and to think of something like being in rain forest, or surrounded by a waterfall. My Therapist also did Hypnosis on me to help me. Also I bought music that helps me relax like sounds of rain and thunder. I also got meditation cds. to help. All of this seems to help me alot. Because before the sieuzure I go into a panic attack, then the more I feed into it the more anxious I get then it leads into going into a seizure. So If I try to stay calm, I notice I can get past the panic attack and wont have a seizure. I hope this helped and that I didn't confuse you too much. I am still going through therapy but I have learned to embrace it and not get aggravated about it. Also When you want to cry CRY. When you want to Laugh Laugh, Dont bottle stuff up inside. if it helps you to have a journal to write down whats wrong. Then I would rec amend doing that too. oh also Make sure you lay down when you get these feelings so you dont hit your head on anything. If you have any question or anything feel free to ask
sincerely and God Bless
First off, I am proud of you for coming to these boards and speaking out to those who have PNES or conversion disorders. It's not an easy thing to admit, which is silly, because no matter what, it's still "A Brain Thing!" I say, a seizure is a seizure and if it affects your life...treat it! Don't ignore it!
I'm glad you're receiving the care you need and aren't taking any poo from neuros. who just want to throw meds. at you. There are so many other ways to treat seizure disorders, which you are discovering...and you've given a LOT of people so much hope who are afraid to admit that they think they're really not having seizures, and it could be psychological...and there is nothing wrong with that at ALL. We need to stop the stigmas and educate people. You are helping, just with one post. Keep it up and Keep it going. Kudos to you, gal!
Last edited by dogmom; 07-23-2011 at 10:08 PM.
The following user gives a hug of support to dogmom: siezurdontrulme (08-16-2011)
The Following User Says Thank You to dogmom For This Useful Post: siezurdontrulme (08-16-2011)