Discussions By Condition: I cannot get a diagnosis.

Grand and Petit Mal Seizures but MRI and EEG normal

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • November 19, 2008
  • 08:23 AM

hi,
to start with, I live in Australia
I get terrible seizures, (both petit and Grand mal) seizures, but the hospital cant give me a diagnosis.
have had one MRi and two EEG's, and although was not allowed to view results myself, my specialist tells me they were normal, and that it must be all in my head.
appart from the seizures, I am in perfect health, dont do drugs, drink rarely, don't have diabetes, or any elecrolyte imbalances or anything, every time it happens, and i get shekced out I am told my vitals are all good.
I no longer bother going to my hospital, because last time i had a grand mal seizure (which apparently lasted for 11 minutes) and was taken to hospital in the ambulance, my wife heard the nurse saying i had been in heaps of times before (it had been three) and that i must be a junky looking for a drug fix because they could never find anything wrong, and that the ambulance should not bother picking me up next time. that really hurt.

I know i am not mad, and i sure as ***l know o am not having seizures for the fun of it! the stress it puts on my wife, with worrying, and my 2 yo daughter absolutely freaks out and screams, because all she can see is there is something wrong with daddy.
I am at my witts end. I am on epilum (sodium valproate) 2000mg bd, and it seems to me that im am wasting my time with the hospital.
it is almost ot the point where i am wondering if it is worth going off my meds so i get a really bad one that forces them to do something, but i dont want to put my family through that. has anyone else found such ineptitude in the health system? have full insurance, so that is not the problem.
Any suggestions would be fantastic, cause I am all out of ideas and sick of the treatment. or should i say lack of treatment?

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10 Replies:

  • Please read this message thoroughly and COMPLETELY before you start thinking I don't believe you or before you start getting angry at what I'm saying. It is somewhat inappropriate for me to approach this topic without being able to gauge the reaction of the person suffering from the problem.Please consider Psychogenic non-epileptic seizures, often called 'pseudo-seizures' by people that do not understand the condition. This is only VERY RARELY malingering (faked) and these are refractory to treatment with anti-epileptic drugs.** (DO NOT STOP TAKING YOUR ANTI-SEIZURE MEDS without a doctors help!!! Doing so can result in severe seizures!!!!) **80% or more of patients with PNES are initially misdiagnosed with epilepsy.PNES can result from psychogenic causes, but ALSO from things such as transient ischemic attacks or migraines.I highly recommend the eMedicine article http://www.emedicine.com/neuro/topic403.htm as it covers this problem in much more depth.again, everyone should understand:THESE ARE *NOT* FAKE they are NON-EPILEPTIC seizures and therefore do not demonstrate findings on EEGs.Good luck with it-B
    Anonymous 42789 Replies
    • November 21, 2008
    • 02:43 AM
    • 0
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  • and although was not allowed to view results myself, my specialist tells me they were normal, and that it must be all in my head. Im in Australia too and from that i know that they aint allowed to not allow you to see your medical notes thou i know myself from my own experiences some doctors will try to tell you you cant see them. You can do so thou under the freedom of Info act.. just make sure the doctor knows you know that it is your right to see your health records. (they aint allowed to withhold them unless there are good mental health reasons not to show you. Some hospitals thou will make you pay a fee to get a copy of your notes (i had to pay $30) ..thou other places if you tell them they legally have to show you.. will give you copies at that point without cost to you. I myself have seizure like incidents .. a friend who witnessed me collapse one time and start shaking and drooling.. told him he said it looked like i was between normal and having a grand mal seizure (he's daughter is epileptic and gets grand mals). I was still concious at the time but only partly. On EEGs epilepsy dont show up in my case but what does show up is abnormal brain wave patterns which doctors just dismissed as it was an 'non specific finding" eg thou abnormal not related specifically to any particular illness. The hospital actually dismissed the finding without telling me or querying me further.. by putting in my notes "possible drug response?". The thing is I WASNT even on any drugs at the time and didnt even know they'd written that.. until i got my hospital records under the freedom of info act. Ive since had another EEG which showed up the same thing. I strongly suggest for you to get hold of a copy your medical records.. and then go and see another doctor. The one who took my second EEG told me that with some things .. the abnormalities may not be seen unless it is actually taken WHILE HAVING THE SEIZURE. (in my case not possible as mine only last under several minutes and only happen rarely).
    taniaaust1 2267 Replies
    • November 22, 2008
    • 05:18 AM
    • 0
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  • I had my first seizure yesterday while on my daily walk (early am). I have never experienced one prior this occasion, I am relatively fit (not overweight), don't smoke, do weight training followed by a 7-10klm walk Monday to Friday every week and take weekends off training to rest and recover. I have done this most of my adult life (age 54).I have a full health check including bloods, urine, stress ECG, Blood Pressure and Prostrate every 12 months and a Colonostemy every 36 months. I have had no prior indications that would alert me there are potential issues with my health although my sleep patterns have not been great for a number of years. I do suffer a mild insomnia and often find it difficult to get a really good nights sleep.I was fortunate I was walking with a friend who was able to describe to the doctor exactly what happened during the seizure. The initial diagnosis is Grand Mal Seizure. My brain CT showed as completely normal. I have an appointment with a Neurologist next week to reaffirm the results and I guess run some other tests.If all tests come back normal, which I am confident they will, am I likely to suffer another Grand Mal or some other type of seizure with similar characteristics to Grand Mal?
    1stTime 3 Replies
    • December 5, 2008
    • 09:39 PM
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  • Do you have any neurological deficits, say tingling, numbness, dizziness, headaches, etc? If you cannot perform a standing romberg on your tip toes eyes closed and stand for 30 seconds without falling you may have an overabundance of solvents in your blood or a heavy metal toxicity interfering with normal neurotransmitter activity in the brain.
    Anonymous 42789 Replies
    • December 5, 2008
    • 10:18 PM
    • 0
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  • Do you have any neurological deficits, say tingling, numbness, dizziness, headaches, etc? If you cannot perform a standing romberg on your tip toes eyes closed and stand for 30 seconds without falling you may have an overabundance of solvents in your blood or a heavy metal toxicity interfering with normal neurotransmitter activity in the brain.Romberg Test both with feet together and on tip toes no problem. I had my wife watch me and there was no excessive movement with either variation of the 30 second test.As you suggest I will have my blood tested for toxicity.Regards
    1stTime 3 Replies
    • December 7, 2008
    • 07:28 PM
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  • Have you been tested for celiac disease? It can cause seizures. Try here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
    aquila 1263 Replies
    • December 8, 2008
    • 09:06 PM
    • 0
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  • Have you been tested for celiac disease? It can cause seizures. Try here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htmMy bloods showed no abnormalities. I am now booked for an MRI and a sleep EEG in Feb.
    1stTime 3 Replies
    • December 10, 2008
    • 05:45 AM
    • 0
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  • Help please.I have had 7 seizures full blown seizures and appx. 10 smaller ones since Dec. 09. The 7 big ones rquired my roomate calling 911 and fire dept. came out. The first one was 36 hrs. out of fast track detox center, was only there 5 days. They gave me valium and phenobarbitol all 5 days. The first one was one of the worst. Could'nt stop seizure, ER finally OD'd me on IV valium and got tubed/vent. Woke up in ICU 4pts, vent. IV's and monitors. Scared the ***l out of me. Have had 6 more since, saw neurologist, had a seizure at that office but nothing showed on EEG. It was one of the worst, did'nt know they were going to do that to me. Had to hyperventilate and then got a strobe light in my eyes. Terrible seizure and tried to kil the administering tech but could'nt get my arms to move. Good thing, I was incrediby hostile and aggressive but could'nt quite figure out what was happenning. Tryng to keep this short as possible. Have had 6 more since that required fire-medics. Talked to them, they see a lot of this thing, they said bad seizures, vitals indicative of seizure, extreme difficulty in transporting/lifting, unable to stop some szs. in field. Have since switched to versed for control in field. Hospital gives ativan and cerebyx, but that makes me itch like crazy. Seizures last up to one hour, usually 20-40 minutes depends on when treatment arrives. Violent thrashing but startes with frozen muscles. I do not lose conciousness. I can see and blink but cannot control head, sometimes it is pounding on the floor, sometimes stuck off to the left side. Jaw does chewing motion , uncontrollable. All limbs flail and it hurts afterwards but not during. Last time firemen had to hold down right arm to get IV going, now I have a tear in deltoid tendon. Getting that xrayed today. Feel no pain during sz. but at one ER, stopped seizing by the time I arrived, Doctor punched me in stomach and I said ouch and he told my friend that I was faking alll this b ecause I wanted drugs. Next doctor, same ER said same thing. They had a discussion about my drug seeing behavior and I was labeled as such. I CAN GET DRUGS AYWHERE. I don't need to go through all this to be medicated. And for Versed? They are nuts but I don't count as a real patient because of my background. Which is, 20+ years serious benzodiazapine abuse, klonopin, ativan, valium, xanax. I would get psych diagnosis to produce such prescriptions as well as get them on-line, Mexico, etc. I have also been drinking alcoholiclly the entire time, extremely heavy usage. All available street drugs as well. Many OD's, 4 head injuries (minor), fetal alcohol syndrome with birth defects, generally disatrous lifestyle. Lucky to be here. Entered detox and rehab, have 93 days clean and sober now. Can't work drive. concentrate, remember much, could'nt walk at first without tipping over, still can't pass a field sobriety test i.e. lean back and touch your nose, walk staight line etc. Still taking .25 mg ativan 3 time daily, soon to reduce to twice daily, then once, then done. Finally got the Doc to give me some neurontin but he did'nt want to because he thinks I am faking all this to get attention, drungs, and disability. I am a male, 49 years old, I am finally doing the right thing and my doctor(s) all think that I am just crazy, told to go see a shrink there is nothing wrong with me. I want to cry.
    Anonymous 42789 Replies Flag this Response
  • Help please.I have had 7 seizures full blown seizures and appx. 10 smaller ones since Dec. 09. The 7 big ones rquired my roomate calling 911 and fire dept. came out. The first one was 36 hrs. out of fast track detox center, was only there 5 days. They gave me valium and phenobarbitol all 5 days. The first one was one of the worst. Could'nt stop seizure, ER finally OD'd me on IV valium and got tubed/vent. Woke up in ICU 4pts, vent. IV's and monitors. Scared the ***l out of me. Have had 6 more since, saw neurologist, had a seizure at that office but nothing showed on EEG. It was one of the worst, did'nt know they were going to do that to me. Had to hyperventilate and then got a strobe light in my eyes. Terrible seizure and tried to kil the administering tech but could'nt get my arms to move. Good thing, I was incrediby hostile and aggressive but could'nt quite figure out what was happenning. Tryng to keep this short as possible. Have had 6 more since that required fire-medics. Talked to them, they see a lot of this thing, they said bad seizures, vitals indicative of seizure, extreme difficulty in transporting/lifting, unable to stop some szs. in field. Have since switched to versed for control in field. Hospital gives ativan and cerebyx, but that makes me itch like crazy. Seizures last up to one hour, usually 20-40 minutes depends on when treatment arrives. Violent thrashing but startes with frozen muscles. I do not lose conciousness. I can see and blink but cannot control head, sometimes it is pounding on the floor, sometimes stuck off to the left side. Jaw does chewing motion , uncontrollable. All limbs flail and it hurts afterwards but not during. Last time firemen had to hold down right arm to get IV going, now I have a tear in deltoid tendon. Getting that xrayed today. Feel no pain during sz. but at one ER, stopped seizing by the time I arrived, Doctor punched me in stomach and I said ouch and he told my friend that I was faking alll this b ecause I wanted drugs. Next doctor, same ER said same thing. They had a discussion about my drug seeing behavior and I was labeled as such. I CAN GET DRUGS AYWHERE. I don't need to go through all this to be medicated. And for Versed? They are nuts but I don't count as a real patient because of my background. Which is, 20+ years serious benzodiazapine abuse, klonopin, ativan, valium, xanax. I would get psych diagnosis to produce such prescriptions as well as get them on-line, Mexico, etc. I have also been drinking alcoholiclly the entire time, extremely heavy usage. All available street drugs as well. Many OD's, 4 head injuries (minor), fetal alcohol syndrome with birth defects, generally disatrous lifestyle. Lucky to be here. Entered detox and rehab, have 93 days clean and sober now. Can't work drive. concentrate, remember much, could'nt walk at first without tipping over, still can't pass a field sobriety test i.e. lean back and touch your nose, walk staight line etc. Still taking .25 mg ativan 3 time daily, soon to reduce to twice daily, then once, then done. Finally got the Doc to give me some neurontin but he did'nt want to because he thinks I am faking all this to get attention, drungs, and disability. I am a male, 49 years old, I am finally doing the right thing and my doctor(s) all think that I am just crazy, told to go see a shrink there is nothing wrong with me. I want to cry.I would see a different neurologist, my neurolgist showed me everything that was wrong with my brain inch by inch and why i have seizures don't let them feel as if its all in your head because it is not, I know from experience that was how I felt when I went to a couple of other neurologists. I finally found one i am very impressed with, that explanes everything to me.
    Anonymous 42789 Replies Flag this Response
  • I know some of these threads are old but I wanted to reply anyway. My 20 year old son has had 3 unexplained seizures in the past 6 months. Started keppra after the 2nd and increased it after the 3rd. Seizure activity showed after the first one but now the eeg's are allnormal. I think it is the med effect on the EEG. We are at a loss at this point and so are the drs. He has no health problems whatsoever. I am now considering a gluten free diet. I read an article about drug resistant seizures and gluten intolerance and it is something that can develop at any age. It is said that a ketogenic diet is sometimes the only solution to unmaganeable seizures. So when you think about it ketogenic means no gluten. Maybe it's just gluten? It's worth a shot. I hope it helps others too.
    Anonymous 42789 Replies Flag this Response
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