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Posted 9/6/2011 1:00 AM (GMT 0)
I have pain induced seizures as well but all the doctors I've gone to say its nothing. Needless to say, it freaks me out hugely. I'm only 16, but I've had 12+ seizures. When I was six, a metal bar was dropped out my head, everything went fuzzy and I don't remember what happened words, but my babysitter said I had convulsions. Every seizure I had until i was 15 was head-trauma related when I rolled my ankle on a date and had a seizure on front of my boyfriend.... :/ I thought it was rare, as my doctor informed me that it was "weird" until I started searching the internet for others. Thank for letting me know I'm not crazy(: I would love to find out what in the world is wrong with our crazy brains(:
Posted 9/6/2011 2:10 AM (GMT 0)
Very interesting posts here, this may sound stupid but why hasn't a Neuro hooked one of any of you'll up for a EEG ECG and induced a lil pain, i'd let them kick me in the guts to get a reading especially if it could tell you what you want to know, i got no idea why i'm fitting my seizures cant be induced they just happen..

Post Edited (Brendo) : 9/5/2011 8:41:56 PM (GMT-6)

Posted 11/22/2011 3:07 AM (GMT 0)
my daughter has had four seizures she is now 14.  every time has been after pain or needles from shots or seeing her own blood.  the doctor thinks its syncope but all the info does not describe loss of concionce, shaking, extreme muscle tightness, and it can happen while sitting.
Posted 1/7/2012 8:39 AM (GMT 0)
i have the exact same thing happened for years ,happend an hour ago just smashing my foot slightly,it's quite odd
Posted 2/17/2012 11:42 PM (GMT 0)
My daughter began having seizures when she was weeks old from severe pain. For example, before she could keep her head up all the time, once it fell and hit my colar bone, and there she was having a seizure in my arms. The doctors said she would out grow it. Of course it was a year or so later before I made the connection with sever pain and the seizures. To spare the stories, about 3-4 times a year when she would have a surprise of sharp pain, she would fall to the ground and have seizures. Interestingly, her last seizure was not physical pain, but when her older sister just got her extremely mad, there she was on the ground. I've also noticed she sings and does a lot of mental work to keep herself 'happy', because when she goes into a 'funk' there is a couple hours of crying. But then she is okay. I wondered if any adults have similar feelings? She is a child so it is hard to talk to her about it. She is also a perfectionist and we has been talking to a counciler about this, as it interferes with her school work and activities.
Whatever this is, it's real. I think the doctors blow it off because they don't see it really causing a problem, afterall, everyone's just fine afterward. (sarcastic)
Posted 2/18/2012 4:03 PM (GMT 0)
about the perfectionism: give her lots of praise for the small stuff, even if it's not perfect. Effort is also worth lots of praise.
Hope she gets better soon.
Posted 2/22/2012 1:47 PM (GMT 0)
My son is 2 1/2 and has had what has looked like seizures since he was about 6 months old. The early ones, though, were more like- he just stopped breathing mostly while sleeping- and he was diagnosed with acid reflux and put on meds. As he got older, they started happening if he was startled- he would hold his breath- those were attributed to breath holding... Then he started having some that didn't fit in either category- and we were off to the neurologist- who said his EEG came back normal- and she felt quite sure they really were just breath holding that would escalate into a seizure. Now, he is having them whenever he hurts himself. Last night, he bumped his knee on the corner of a dresser drawer and had one. He gets very, very stiff- his eyes get huge- and he won't focus or re-focus them. Then he gets more rigid and his eyes move back and forth. He has only had slight convulsive movement once- and that was when he had one after swimming and expending a LOT of energy. His neurologist did refer him to cardiology to have his murmur checked, but his pediatrician said he didn't hear anything concerning and refused to ok the referral from Children's Hospital neurologist. Kind of unbelievable. Anyway, after having two in the last two weeks- and finding out more online (vasovagal syncopy and what else you have written about here), I am re- invested in getting his heart checked. Will also try the Vitamin D. Thanks!
Posted 6/29/2012 6:38 PM (GMT 0)
My daughter is 16 months old. She had her pain induced seizure at 11 mths. Doc tried to say feveral seizure, but she didn't have a fever. 2 1/2 months later 2 concussions in 48 hours. After reading I think they may have been on the seizure side. 1 st was a small fall and2nd was frozen hamburger meat dropped in her head. She just had another seizure 2 days ago. She fell and caught her self with her hands. I have noticed with all she held her breath. Don't know if they are berthing holding spells. My middle child fell on her 2 wks before her 1st seizure and fractured her tib and fib. Nothing then. So I'm trying to figure out the differ pain levels. The 2 seizures were different than the 2 concussions. My friend head vasovagal syncope on radio with baseball player having seizures after getting hit with a ball. But after reading about that it doesn't make sense. We gave a neuro appt in aug. I guess we will go from there. Her EEG, EKG, cat scan were normal but her heart cath shows small murmer. The doc doing EEG says she could be having a seizure when they do the test and it show up normal. We are all gonna have push to get answers. I am willing to go to as many docs as I have to to find out what is wrong.
Posted 7/23/2012 7:12 PM (GMT 0)
Y'all are not crazy. I was diagnozed with Epilepse when I was in elementary school. My seizures were always pain induced. I would somehow hit a joint or part of my body just right and would lose conciousness, become stiff and rigid, arch my back and have tight convulsions (grand mal seizures). You wake up unaware of your surroundings, confused and dazed. For the rest of the day I would be really out of it. I had to be on medication until I was 12 when I "grew out" of it and have been in remission since. I have only had two small petite mal seizures in the past 4 years. My aunt also had epilepsy but sadly passed away when she was a teen bc she had one while taking a bath. Don't take them lightly and don't just think they are "all in your head". There is something different called Psychogenic Nonepileptic Seizures which are not seizures but you pass out due to pain. You do not get rigid and have convulsions but it gets diagnosed wrong a lot. We are watching my 4 year old son closely now bc three times now when he has had pain he has become rigid and lost control of his bladder and urinated on himself. He doesn't seem to lose consciousness but everything else points to the same so we will see how he does.

The one thing you have to understand is after years of tests, eeg's, scans etc. is that when you are trying to diagnose epilipsy or any seizure disorder, you have to catch it in the act. You won't ever test positive for it in a test unless your brain triggers one of some kind big or small. That is why the eeg's are normally sleep deprived and then flash the pulsating light in your eyes to try to trigger one. Not everyeone's triggeres are the same though. Pain is deff a trigger but with mine it was only with my knees, elbows, head, parts where there tended to be more pressure or sensitivity. Don't get discouraged bc some docs don't "know". keep talking to new docs till you get your answers.      

Posted 7/24/2012 3:03 AM (GMT 0)
Thank you. Since my last post she has had 2 more. One from carching her self when falling and one she she slipped and hit her head out in the yard. But she fell the other day and has a huge knot on her forehead and she was fine. So I don't understand. Hopefully we will know something soon. I pray your son doesn't have this as well. It is very scary.
Posted 8/27/2012 2:34 PM (GMT 0)
I have had these Pain Related Seizures since I was 2 1/2. I had my first one when I stepped on a fishing hook. My parents took me to all sorts of neurologists to do every type of testing you could. They figured out that I did not have Epilepsy but that they needed to treat the seizures. They put me on Tegretol for years and this stopped the seizures. However, I came off the medicine at like 10 and gradually they came back. I am now 29 years old and had my most recent seizure two nights ago (why I am writing this). I had not had one for nearly 6 months before that and before that it had been almost 6 years. I have gone to other doctors that say that if I can learn to control my anxiety I will learn to control the seizure. I do think this is true. For your children, I would try to teach them to deal with the stressers when they get hurt. Find a new way to work thru the pain. For me, when I am in pain I just lose control and this is when I have the seizure. And when I say seizure it is full blown granmal seizures.... and yes, I feel like crap for about 6-8 hours afterwards. Almost always wake up throwing up and feeling incredibly dazed. I would also highly recomend anti-anxiety medicine for anyone that has this type of seizure, I think this has taken down the amount of seizures I have. And yeah, just dont get hurt!
Posted 8/28/2012 2:20 AM (GMT 0)
The neurologist said that she is having these from being startled. That I could scare her and her have one. Unless she has one with out anything causing it to not be worried. I don't know but don't know where we should go either. I guess I will just have to watch her.
Posted 9/6/2012 10:19 PM (GMT 0)
jmpokluda said it well." u guys are not crazy." But I would like to add: your dr's are!!! I went to a neurologist for a year & 1/2 for my epilepsy. she refused  to up the dose i was on, which was the lowest dose of the most mild med, when i complained of having several episodes a week on the meds. I knew she was going to kill me. I looked for other neurologists who "specialized in epilepsy". Guess what? that means nothing. It only means that they see patients with epilepsy, & other problems. A specialist is someone who has gone to college a year longer than other neurologists, studying epilepsy only for that year. Then they serve as interns under an epileptologist for several more years, and they only see patients with epilepsy. In my state, there are only 5 epileptologists,(epilepsy specialists), & they work at an epilepsy center together. My epileptologist did more for me in 1 month than my neurologist did in a year & 1/2!!! This is my 1st day on this site, & you are all very smart people, with a lot of information that's useful to me & others. A lot of dr's try to blow u off. don't allow it. I respect a dr more if they say, " i have no idea", or" I don't know".  I even had a dr tell me one time, "you are a medical mystery, I have never seen a bacteria be so resistant to this many antibiotics, you know if it spreads to your brain you are dead, don't you? Now go home & try not to worry about it". lol lol. I fired that dr. too.Most everyone that dies is under a dr's care. There are great drs who have saved lots of lives & we owe them. But there are drs who don't know much about our illness, & for that reason, we need to seek another dr. It was mentioned earlier in this thread about the diagnosis of "psuedo seizures". This is typically used to descibe someone who is faking a siezure. It's  an insult. someone else said their dr referred them to a specialist. Now that's a dr you can trust. He's helpful & concerned.

 

Posted 1/14/2013 7:52 AM (GMT 0)
My pain is said to be in the top 5% of severe cases of severe intractable chronic pain, flare-ups are said to be on the level of end stage leukemia. I have been in chronic pain for over 26 years, a combination of 3 unrelated (to each other) injuries (a facial smash and two spinal injuries, all with bone pain and nerve entrapment) plus co-morbidities like Hiatial hernia and ulcers from unrelenting nausea, migraines (separate from the bone and neuropathic pain from the skull injury), osteoarthritis and fibromyalgia. I was able to sort of manage normalcy as best I could until the third injury, a sexual assault where my lower back was violently torqued and kind of snapped. The doctor said I was "lucky to be alive". However, I have been getting intermittent pain induced seizures since this assault, I think as a result from the GHB poisoning.

I am glad to find that others have pain induced seizures too- not that I'm glad others are suffering, but it is vindicating since no doctor I have come across will acknowledge this exists, except for one neurologist.

How do people manage with this? I have no regular support system.
Posted 2/20/2013 10:29 PM (GMT 0)
I have seizures since the age of 5. I scraped my knee saw blood and fainted. Saw someone that scared me and fainted. Saw blood or had really bad pain or menstrual cycle and began having seizures. Everytime I hurt bad, I had seizures. So yes, people described them as seizures not fainting spells. Probably no Seizure medication for this. Probably not epilepsy, but just as dangerous and should not drive if you feel a strong pain. I am still in the same boat and am 59 yrs old and still having seizures due to being sick and in any kind of pain, stress, or depression and even having them during sleep. Just a seizure disorder of another kind.  Judy
Posted 3/1/2013 4:22 AM (GMT 0)
Hi I'm new to this forum thing. Anyways my wife has developed seizures out of the blue, never had one before in her life. This started about 6 months after we got married. She was diagnosed a log time ago with fibromyalgia. We weren't sure what was going on so we started at the family doctor and he gave her some meds to calm her down... Well they didn't help, so we went to an internal medicine doc who thought they were epileptic so he sent us to a neurological doctor along with new meds to calm her episodes down. After 3 eeg's we found out they didn't deal with her brain and were sent to Cleveland clinic. The doctor said she had seen his in a fairly large percentage of people with fibro. She suggested a form of pain management so my wife found a holistic doctor who took some x rays and said her spine was messed up. So she did physical therapy, acupuncture chiropractic stuff, and nothing was helping. So we went to a spine doctor and got an MRI and found out she has degenerative disk disease and a "little bit of a herniated disk". So all this running around has gotten us nowhere. She's always saying her back is hurting and we can't find a way to fix it. She takes all kinds of muscle relaxers and pain medications and even aspirin for her joints in her back and she still has multiple of these seizure- episodes every day. I'm not sure if anyone has any suggestions but at this point we will try anything, I bought her an inversion table and that seems to be hit or miss sometimes. But any ideas would be appreciated.
Posted 3/31/2013 12:34 AM (GMT 0)
I thought I was the only person having similar problems until finding this forum. I am now a diagnosed epileptic, however I began having episodes around 3 and wasn't diagnosed until 26. My first "episode" happened when I was carrying a large jar of pickles and fainted. After an EEG and MRI the doctors told my parents I was fine and would outgrow it. I continued having fainting spells (as the drs called them) throughout my childhood every few years or so. They all seemed to be pain or anxiety related and most of the time happened due to a hit on the elbow or knee. They got less frequent as I got older and I was able to drive and function as a normal teen. Two severe seizure-like spells within a few months time (one not pain related) prompted another hospital visit. Mri and eeg came back normal. Once again my parents were reassured that I was fine and just needed to keep calm if I get an aura and try to prevent hurting myself. I was told the brain continues to change until approximate age 25 and my problems would def cease by then. I was allowed to continue my life with no restrictions or medications. I was completely episode free from age 19 to age 25 when a slight hit if my elbow (which I have done countless times before) caused another episode. My dr referred me to a neuro and after a normal MRI my EEG came back abnormal. My neuro found significant brain scarring and electric impulses signifying epilepsy. I was immediately prescibed dilantin (100 mg/3 times a day) and my license was revoked. I was told I could not work bc I was a liability. When I mentioned that most of my episodes were pain related or after hitting my knee or elbow I was told it was a coincidence and had nothing to do with my condition. I also tried to explain that the convulsions were rare and that generally I am only unconscious for a min it so the dr said that all epileptics are different. Since then I have had another seizure after hitting my elbow and ended up with a concussion. I was put on keppra 500 mg 4 times daily and I hope to phase out to one med soon. I've had electric shock tests done to my arms and elbows and my drs assure me that it's all coincidental but I find that hard to believe. All of my episodes (syncope they say) and seizures have been pain or anxiety related and the fainting spells after a hit to the elbow/knee area. I hate the meds and their side effects but I'm always assured its the best option. I have lost my job, my independence, and sometimes I feel like I'm losing my mind too. I find comfort only in the fact that I am not alone.
Posted 4/23/2013 1:08 AM (GMT 0)
I was inspired to search for pain related seizures once again after watching a movie dedicated to a woman who died from something known as Long QT syndrome ("P.S. I Love You" was the movie, btw - I highly recommend it). Symptoms of the syndrome include fainting, seizures, and sudden death; these are all caused by a heart arrhythmia that is usually genetic. I've never been diagnosed for my seizures, but reading about this syndrome made me wonder if it might not be a possibility. If not for me, then maybe at least for one of you out there struggling with the same problem.
In my case, I had one seizure before I was old enough to remember it and wasn't taken to a doctor then. When I was 6 or so, I hit my hand on a doorknob, triggering a seizure and my parents rushed me to the hospital, where I was evaluated, but nothing turned up. At 7, I slammed my finger in a heavy door and seized in class, causing another visit at a different hospital. During these two years, I had numerous MRIs and an ECG. Nothing. Since then I have had seizures caused by hitting my elbow on their floor, hitting my elbow on a floor vent, falling down the stairs, after giving blood (to be fair, I was a little under the weight limit) and after bringing the soft spot below my knee on the edge of a metal bed frame.
In addition to those verified seizures, I once passed out after running to catch the bus and I had a very strange incident, where after falling repeatedly and scratching up my hands while ice skating, I felt the prickly feeling that comes before the seizure and sat down only to have my vision go slightly blurry (as happens pre seizure) and my hearing to fade to the point that I only heard the barest hum of noise, despite being in a rink full of people, seated next to the loudest piece of machinery imaginable, with someone yelling my name right beside me.
The hearing incident scared me the most, because that is the only time that's ever happened. But the next seizure after that, the last one I've had, I tried to prevent the seizure by focusing and breathing deeply (which has been known to work in the past), but I still felt faint after some time. I went downstairs to get a glass of water, hoping that would help, when I was overcome by tiredness. I remember lying down right on the kitchen floor with my cup next to me. When I woke up, I was on my back, covered in water, with my parents over me. This time I was "awake" for a good five minutes, trying to communicate, before I could even raise my arm. It took me three tries to grab hold of my mom's arm. After that, I was much clammier, shakier, and more tired than I've ever been after a seizure. I went right to bed and slept for hours. That was about 4 years ago and I am terrified to have another for fear that it would turn out worse than that one.
I haven't seen a doctor for this since the first times when I was young. After the last seizure, I wanted to see one about it, but I was just then old enough to drive and my mother told me they wouldn't let me have my license. I am too scared to mention it now knowing that the doctor probably wouldn't be able to help anymore than before and knowing that I would hate to be misdiagnosed with epilepsy (having my license (and thereby my freedom and ability to make a living, essentially) taken from me for something that I know doesn't occur randomly (making it so that I am not a danger on the road)) and not have anything done about my real problem because of a false answer. And, of course, I don't have health insurance, anyway...
I'll be checking back to see what others are experiencing and learning. Hoping for the best for all of us!
Posted 6/30/2013 8:10 AM (GMT 0)
Thank you everyone for posting about this you have made me not so alone. My 7 year old son has now had the same Symptoms 4 time that I am aware of. It make me feel a little better know he is not alone. I do worry that 1 time it will happen when I am not around but, I guess that is just being a mother. I to have been told that it is most likely fainting with Seizures like Activity. He too know when it is going to happen and we get him to Lie down and we have stopped it too but some of the time we just can not like today he jammed his finger playing football and he thought it was broken and he had a Seizures. After it happens he is so tired and just wants to sit with me and rest. I hope he's not having any brain damaged with these fainting or Seizures like active. Thank you again for Sharing with us I will let him know he is not alone.
Jenn
Posted 9/27/2013 2:53 AM (GMT 0)
Oh my goodness!!! I have read through all these posts and am amazed at the similarities! I'm not alone!!! Ok so here is my story. I had my first seizure at age 8. My dad accidentally sat on my arm while waking me up for school. All I remember is pain and trying to tell him. I passed out and that was the first of many. I stop breathing and loose continence every time. Other seizures followed, fall on tushy while dancing, having my blood drawn, making a bowel movement..I pushed hard too soon got light headed and fainted, first two visits to the I gynochologist...again all felt pain and then aura of nausious, fuzzy body sensation. At age 19 went for second opinion and doctor said I had vase vagal syncope and I took salt pills. I was seizure free for about 2 years but then in college alcohol induced seizures, as well as diarrhea. I have had many where I bumped my knee, that funny bone area. Once after being intimate with my college boyfriend. I'm 35 now and have lost track of how many. Oh and there was also one I had from eating two large chocolate chip cookies. I had the cookie at 8pm and by 4 am woke up to seizure. Similar situation was with alcohol... Had a small amount one or two drink and in middle of night just as the body is in the middle of metabolizing the sugar the with drawl throws me into a seizure. Another time I had a seizure in a yoga class. I ran on the treadmill prior and walked in a little fatigue, then 30 minutes into class I seized coming up from reverse warrior. I always pee and wake up tired. In fact the first few seconds I forget where I am, sometimes feel naked and even though my eyes are open I can't see, it's black and I just hear the prices around me. The worst is when you feel it coming and try to control it and talk yourself from panic and boom your out. I have had episodes at work twice because I banged my knee and 2 other times in public because I banged my knee. Another while having a mammogram. Again I feel intense pain and then I feel the fuzziness and that's all I remember. Oh and I can think of at least two times while I was walking my dog and she pulled me and I fell forward on my knees and hands and boom out within 30 seconds. Reading your posts there are so many similarities. Eeg, catscans, heart monitor, MRI are all normal. It's frustrating. But there is something else that I would like to mention that I wonder if its a common thread. Have any of you experienced psychic moments where you knew things or intuitively predicted things or feel a strong hunger towards spirituality. Here is my belief although scientifically there is no real explanation I bet the wiring of our brains is slightly different. And that different wiring gives us gifts that we don't realize exist. Does this sound crazy? Please feel free to email me at [email protected] if you would like to discuss further. Thank you for taking the time to read this. I have never posted before. And I don't read post websites. But I am glad that I came across this site and hope to hear from you all. Btw I am now 35 years old, on 300 mg of lamictal and trying to have a baby. My husband is scared that labor pains will trigger as well as my family, but I assure them that I would do an epidural. I ran two marathons and made it thru with no seizure so I am hoping that when the universe blesses me with being pregnant I will be safe and seizure free. My best to you all. I wish we knew more about the brain!

Brooke
New York, New York
Posted 9/28/2013 3:59 AM (GMT 0)
I have had several grand mals and hundreds, maybe thousands, of petit mal seizures and mine are directly related to my menstrual cycle, termed menarchal epilepsy. After my first grand mal, they are no longer related to my period, but can be brought on by stress. My husband passed away when we were both 32, and I had many following his death.
Posted 9/29/2013 11:49 PM (GMT 0)
Hello neuropathy. I'm so so sorry to hear about your husbands death. Have you been able to figure out what your seizure threshold is? I'm 35 now so I'm able to figure out what my threshold is and carry on the day or week accordingly.
Posted 12/1/2013 8:45 AM (GMT 0)
For the first time today I experienced a seizure. I was trimming my mate's dog's nails and he didn't really like it. When I got to the fifth one, he clamped down hard on my wrist. about a minute and a half later I felt this super intense lightheadedness like I've never felt before. I tried to sit up and felt super nauseous, like I wanted to throw-up, though I have a really strong stomach and rarely ever have before. My mate was asking me if I was okay, but I couldn't really talk, because the pain in my head and wrist was so intense suddenly. The next thing I know, I'm being shook and turned on my side and wake up feeling okay, but still really nauseous. My mate said my face went completely pale white and I was convulsing badly. After I felt the strength to get up, I just wanted to lie down and take a nap and then felt better maybe an hour and a half later. The dog bite really didn't hurt that bad, but for some reason, shortly after it happened, I went into this scary episode. I'm 32 years old and can't remember anything like this ever happening to me before.
Posted 12/1/2013 3:55 PM (GMT 0)
How do your muscles feel?  Are you sore all over? I'm asking because I have had 2 grand mal seizures and your body really hurts after. At least mine did.

I think you really need to see your doctor and have tests run. Things will only get worse if you ignore this. You don't want to have another espisode while your driving.

Please keep us informed.

Greg

Posted 12/4/2013 4:50 PM (GMT 0)
I'm 99% sure that this was a vasovagal syncope (pain-induced seizure), related to where I got bit and my body position at the time. The bite was directly over my watch which pressed down into the main artery running through my arm to my hand. My body did not hurt at all after the seizure, although I still felt semi-nauseous for much of the day after having been bit.
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