Anyone ever had a seizure?

duggroduggro Posts: 1,343
edited February 2010 in All Encompassing Trip
On boxing day 2009 I woke up with a swollen tongue, really tired muscles (not sore, just tired), a pinprick rash on my shoulders and a small amount of blood on the floor next to my bed.

The doctor wasn't sure what it was so she sent me to a neurologist. The neurologist couldn't see anything wrong with me with the basic tests, and I also had an ECG, but they contacted me afterwards saying that there's no reason I should stop driving and that I will need a brainwave test at some point soon.

Nothing has happened since then, so I thought it was a one-off, but this morning I woke up with identical symptoms. Muscles so tired I couldn't really sit up or lift my legs, a tiny tiny amount of smudged blood on my pillow, pinprick rashes on my shoulders and around my eyes, and a swollen tongue.

The doctor seems unsure but says it could be seizures but I have no idea what to think! I'm getting a little worried and stressed about it, as it would be nice if the professionals could just say what's wrong with me!

Has anyone ever heard of these specific symptoms in relation to seizures??

Any help or advice you could give would be appreciated!
Dublin Leeds Berlin Wembley
Post edited by Unknown User on

Comments

  • I don't have any advice or anything, but I certainly hope you're ok and that they figure out what the cause is soon!
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  • eyedclaareyedclaar Posts: 6,980
    I don't want to alarm you any further, but I don't think that skin color is all that healthy either...
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  • oona leftoona left Posts: 1,677
    They weren't able so see anything with the basic tests. Doesn't this call for the more in-depth tests?! Sheesh.

    Did you have a C/T and MRI done?
  • pandorapandora Posts: 21,855
    duggro wrote:
    On boxing day 2009 I woke up with a swollen tongue, really tired muscles (not sore, just tired), a pinprick rash on my shoulders and a small amount of blood on the floor next to my bed.

    The doctor wasn't sure what it was so she sent me to a neurologist. The neurologist couldn't see anything wrong with me with the basic tests, and I also had an ECG, but they contacted me afterwards saying that there's no reason I should stop driving and that I will need a brainwave test at some point soon.

    Nothing has happened since then, so I thought it was a one-off, but this morning I woke up with identical symptoms. Muscles so tired I couldn't really sit up or lift my legs, a tiny tiny amount of smudged blood on my pillow, pinprick rashes on my shoulders and around my eyes, and a swollen tongue.

    The doctor seems unsure but says it could be seizures but I have no idea what to think! I'm getting a little worried and stressed about it, as it would be nice if the professionals could just say what's wrong with me!

    Has anyone ever heard of these specific symptoms in relation to seizures??
    Any help or advice you could give would be appreciated!
    I have no experience either but compassion. The Doctors these days can really make you crazy with the lack of answers to your problem. I went through that last year.Whats going on with our medical profession?
    I did look up post seizure symptoms and I did not see yours listed except weakness. Some of those listed include headache, nausea, thirst, bruising, difficulty talking.
    My first thought was an allergic reaction to something. Anything new you are taking or coming in contact with? Maybe you best go to a University Hospital in your area. They are the most innovative and have the best resident Docs. They are the most up on new diseases etc. You'll feel better if you can get an answer and maybe its nothing. I have seen friends go through some very weird stuff and it passes.
  • pjfan31pjfan31 Posts: 7,331
    Man investigate. I too have no advice, but hope you're okay.

    My sis was sick for ages, one doctor even told my sis and Mum that the scans were fine and put it down to my sis having mental problems and making her illness up. Utter Bullshit, stupid bitch doctor.

    My sis went to some professor, he saw the same scans and said 'down here, these scans ARE NOT FINE'

    My sis has a paralysed bowel and stomach.

    My point, investigate further, don't let any Dr tell you that there's nothing wrong when you know there is.
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  • neilybabes86neilybabes86 Posts: 16,057
    sounds like me 8 years ago


    i was 25 never had any in my life

    one day i had one in my room after work

    went to the hospital and was admitted for 1 week

    they did every test known to man.. ekg mri cat scans everything

    with that they couldn't come up with an answer

    they said i was in the 5 % of seizure paitents in that i was 25 when i had my 1st and they couldn't find any reasons why

    i was put on meds but i thought i was a tough guy and stopped them suddenly ...3 days later i had another

    long story short i had 3 over a 1 1/2 year span but i've been fine for the past 6 years because i take my seizure medicine everyday ( lamictal)


    i think you might be a case like me..no explanations ( which suck)

    maybe it wont happen again but if it does get on some meds and everything should be gravy

    any questions just ask good luck
    i post on the board of a band that doesn't exsist anymore .......i need my head examined.......
  • duggroduggro Posts: 1,343
    cheers for all the info folks!

    chasing up my GP and neurologist tomorrow to see what's going on. i think i'm going to push for an mri or a ct scan just to cover all the bases.

    i feel stupid, but i genuinely dont want to go to bed at the moment, just in case it happens again!

    i'm kind of hoping they dont say they were seizures though, as i dont want to have my driving licence revoked for a year, i could really do with driving for work :(

    anyways, thanks again!
    Dublin Leeds Berlin Wembley
  • neilybabes86neilybabes86 Posts: 16,057
    duggro wrote:
    cheers for all the info folks!

    chasing up my GP and neurologist tomorrow to see what's going on. i think i'm going to push for an mri or a ct scan just to cover all the bases.

    i feel stupid, but i genuinely dont want to go to bed at the moment, just in case it happens again!

    i'm kind of hoping they dont say they were seizures though, as i dont want to have my driving licence revoked for a year, i could really do with driving for work :(

    anyways, thanks again!



    look into a tilt table test also
    i post on the board of a band that doesn't exsist anymore .......i need my head examined.......
  • dottlesdottles Posts: 9,140
    I've had loads of seizures, often double seizures (come round from one and then immediately have another).
    They started when I was 14 and seemed to stop at 21 as I've not had one for 9 years. I was put on anticonvulsants straight away, taken off them at 18 and started having seizures again within weeks, so got given meds again. At the age of 21 they tried taking me off them again and am now non medicated. But live with the constant reminder they are likely to reoccur at some point in my life, and probably when there is another hormonal change.
    I had test after test and it never was traced to a specific cause or condition, although a form of epilepsy is the most likely cause for mine and so it is easier to say I am epileptic. As yours seem to happen at night could you ask for an observed sleep test with an EEG? I also had a mobile EEG which was attached for 72 hours at a time, whilst I carried on with my daily life.
    I would keep a diary of the incidents, your symptoms and anything else you think relevant, it may help establish a link or pattern.
    Certainly how you're feeling regarding tiredness of muscles etc is how I feel after mine, like I've done 10 rounds in a heavyweight boxing match but not the rash etc.. I do sometimes have blood but that is where I've bitten my tongue. I get a warning as well, although I never realised until I kept a diary, it's a tingling sensation in my spine and a metallic taste in my mouth.
    I would push for some explanation or diagnosis if I were you.
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  • neilybabes86neilybabes86 Posts: 16,057
    one of the ones i had i was in my apt. in boxers and no shoes

    i went down cut my head and when i came to i just walked out of my apt. with nothing on

    i didn't even know what i was doing

    my gf at the time followed me out but of course we had no keys so now im stuck outside in my underwear with nothing else when i came to i said wtf?

    crazy shit those darn things
    i post on the board of a band that doesn't exsist anymore .......i need my head examined.......
  • sounds like me 8 years ago


    i was 25 never had any in my life

    one day i had one in my room after work

    went to the hospital and was admitted for 1 week

    they did every test known to man.. ekg mri cat scans everything

    with that they couldn't come up with an answer

    they said i was in the 5 % of seizure paitents in that i was 25 when i had my 1st and they couldn't find any reasons why

    i was put on meds but i thought i was a tough guy and stopped them suddenly ...3 days later i had another

    long story short i had 3 over a 1 1/2 year span but i've been fine for the past 6 years because i take my seizure medicine everyday ( lamictal)


    i think you might be a case like me..no explanations ( which suck)

    maybe it wont happen again but if it does get on some meds and everything should be gravy

    any questions just ask good luck

    wow your story is remarkably similar to mine. in 2002 i was 22, had one out of the blue. had another one about an hour later in the ER. also had every test known to man done and got no answers. took my seizure medicine every day for 5 years and in 2007 decided maybe i didn't need it anymore. (mistake). 6 weeks later i had another, once again doctors found nothing wrong so now i take my medicine everyday again and haven't had one since that day in 2007.
    Stunned by my own reflection, it's looking back sees me too clearly and I swore I'd never go there again. Not unlike a friend that politely drags you down.
  • vedderfan10vedderfan10 Posts: 2,497
    I've woken in the middle of the night thinking I had a seizure and then immediately thinking "not again" and seemingly feeling my muscles tense and contract...fully awake the next AM every single muscle in my body was sore and my jaw was killing me...It all happened again a few months later, so I asked my GP about the possiblility of having seizures in my sleep...but he kind of laughed it off. Then I realized that it was a certain type of apple cider I was drinking that made me feel that way! So I've stopped drinking it!

    But lately, I've been waking up about twice a month feeling absolutely wrecked and sore! Jaw killing me, neck stiff and a charley horse in my calf...and I've got this horrible tremor all the time...my GP thinks it's the wellbutrin he put me on...but I've been on it for about 6 years...I really really hope it's not MS.

    I will ask him for a neurological work up when I see him in March...it's starting to impact my work (I'm a medical transcriptionist)...

    certainly good luck to the rest of you folks...brains are very strange and powerful things, that's for sure....
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  • lukin2006lukin2006 Posts: 9,087
    Whatever you do be vigilant and get as many opinions as necessary. Get 2nd or 3rd opinions if possible. Get the test that you need. Doctors are not always right so seek as much help needed. I hope your medical problems get resolved. Take care.
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  • I've never had a seizure, but my mom did after she gave birth to my little brother when i was 14 it was scary,and she had that weak feeling before/after it

    I do wake up though and sometimes I can't move im paralyzed, and ill get these intense cramps in my feet and legs out of nowhere in the middle of the night! So weird!! Sleeping isn't as fun as it used to be lololol.
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  • zenithzenith Posts: 3,191
    add me to the unexplained group .... except the majority ones ive had are more black outs i guess. you can be talking to me and ill just switch off completely. if im standing i wont fall over. but ill stop talking, and just completley switch off - like youve hit the off button ... i forget where i am, what ive been doing ... & it'll last a minute or two
    mine all started at the same time my thyroid went haywire and i got diagnosed with graves disease. anyone who doesnt have that - it puts your thyroid into hyperdrive, you loose weight, and you act ... well, nuts really. half way thru the treatment for that i started having these weird black outs. and they escalted into two full on seizures - both at night while i was asleep - both with all the symptoms youve listed - muscles like you just ran a marathon - i bit my toungue - and i dug my fingernails into my palms so hard it lifted the skin - headache - id often loose a huge chunk of memory along with them too. sometimes a few hours, sometimes a few days. which was really worrying - so i saw a nuro along with the endo (they both knew each other too - which was a laugh ) he ran mri scans etc etc. nothing. not a reason for it at all.
    while it was all happening i learned that a weird sort of floaty, vertigo feeling would warn of a black out. sometimes i would have one after that, & sometimes i wouldnt. but if i did have that feeling, take notice of it.
    and i ended up on lamictal and epilim. neither of which im happy about at all, because ... i simply dont like meds. chemicals. full stop. but ive also learned, the hard way - like my defective thyroid gland :roll: im stuck with this. if i get slack and dont take my meds it'll happen. i have managed to half the original dose (because im a stubborn, determined little shithead) but thats as far as ill get i think.
    both the endo & the nuro have theorised on these particular seziures being linked with the thyroid disorder. but even tho theres physically a lot of co-incidences, apparently theres not been enough recorded similarities with other patients. if there ever is a few more, they joked i might end up on 'RPA' :roll:

    remember tho - just because a doc says, doesnt mean it is. you have a say in your treatment, the possibilities, your eventual meds if need be. & unfortunetley, theres plenty of cases where they just 'dont know'
    impatience is a gift ........
  • redrockredrock Posts: 18,341
    zenith wrote:
    you can be talking to me and ill just switch off completely. if im standing i wont fall over. but ill stop talking, and just completley switch off - like youve hit the off button ... i forget where i am, what ive been doing ... & it'll last a minute or two

    Those sound like absence seizures. My husband had a couple of those after his stroke.

    Duggro... don't rely on your GP.... Get referred and thoroughly checked.
  • dunkmandunkman Posts: 19,646
    Customs and excise once took away all my copies of Beastslut 9...
    oh scary... 40000 morbidly obese christians wearing fanny packs invading europe is probably the least scariest thing since I watched an edited version of The Care Bears movie in an extremely brightly lit cinema.
  • neilybabes86neilybabes86 Posts: 16,057
    sounds like me 8 years ago


    i was 25 never had any in my life

    one day i had one in my room after work

    went to the hospital and was admitted for 1 week

    they did every test known to man.. ekg mri cat scans everything

    with that they couldn't come up with an answer

    they said i was in the 5 % of seizure paitents in that i was 25 when i had my 1st and they couldn't find any reasons why

    i was put on meds but i thought i was a tough guy and stopped them suddenly ...3 days later i had another

    long story short i had 3 over a 1 1/2 year span but i've been fine for the past 6 years because i take my seizure medicine everyday ( lamictal)


    i think you might be a case like me..no explanations ( which suck)

    maybe it wont happen again but if it does get on some meds and everything should be gravy

    any questions just ask good luck

    wow your story is remarkably similar to mine. in 2002 i was 22, had one out of the blue. had another one about an hour later in the ER. also had every test known to man done and got no answers. took my seizure medicine every day for 5 years and in 2007 decided maybe i didn't need it anymore. (mistake). 6 weeks later i had another, once again doctors found nothing wrong so now i take my medicine everyday again and haven't had one since that day in 2007.


    the dr. said i could i could come off the meds but iam hesitant ..even more now :?
    i post on the board of a band that doesn't exsist anymore .......i need my head examined.......
  • duggroduggro Posts: 1,343
    I started feeling dizzy yesterday....still feeling a bit ropey today.

    That normal or a bad sign?
    Dublin Leeds Berlin Wembley
  • The blood/tongue swelling is probably because you bit your tongue. You should go for a sleep study and get a Brain wave test. Some doctors, I'm pretty sure, will do them at the same time/visit.
  • duggroduggro Posts: 1,343
    duggro wrote:
    I started feeling dizzy yesterday....still feeling a bit ropey today.

    That normal or a bad sign?
    actually, im starting to be concerned i got myself into a state of anxiety.

    went for lunch with my girlfriend, had some diet coke, then she said something like "you're acting weird" meaning that i was a little distracted but i took it to mean "you're going crazy", so i got a little worried, then i had a coffee. i then stood up and started feeling like i was on a boat, and since then i have been feeling a little light-headed, slightly short f breath, and my heart is racing...

    does this sound like anxiety?

    man,i never get ill....totally falling apart just now though!
    Dublin Leeds Berlin Wembley
  • Heatherj43Heatherj43 Posts: 1,254
    I started having seizures out of the blue about 4 or 5 years ago. My muscles weren't just sore, it felt like my ribs were broken. That is because to seize is to have everything lock up, and then you convulse, while muscles are locked up. There is no memory of it. I never had a rash. I did have blood from biting my lip. For 2 hours I was still biting my lip and didn't know it until my daughter told me at hospital, and even then I couldn't unlock my jaw without using my hands.
    I have had many after the first, but didn't bite into anything and didn't hurt afterwards. There are various kinds of seizures. Mine are grand mal. I had to go through 3 neurologists to find the right one. I go downtown Detroit to the Medical Center. Its through the Med school from the local university. I'd advise you get a doctor from a palce like that.
    I didn't drive for 2 or more years. I was scared that it would happen while driving. I was totally unconcsious and it wasn't like I woke up when i came to. It was like I was there and then still there, howevere I was sitting someplace else and people were yellinmg at me. I had no idea anything happened until they showed me the blood and foam. I foamed at the mouth the first time.

    Even if you are not having seizures, something not good is happening to you. You need a better doctior who will make sure of your diagnosis. There are tests that can determine without a doubt that you have a seizure disorder. You could kill others if you don't get this right.
    Save room for dessert!
  • Heatherj43Heatherj43 Posts: 1,254
    FirstExit wrote:
    The blood/tongue swelling is probably because you bit your tongue. You should go for a sleep study and get a Brain wave test. Some doctors, I'm pretty sure, will do them at the same time/visit.
    YES!! I have had lots of eeg's, but they also did a five day one, in hopsital, while being filmed on camera. It was the best diagnostic test I had. They got to watch on TV what was happening and at the same time got to watch what my brain was doing during the seizure. They were able to pinpoint exactly what part of my brain had problems. I can't remember anymore exactly what they said, but it meant that the right side of my brain always has too much electricity going through it. For me, even when not seizing, I have too much stuff going on and its like little lightning strikes occuring all the time, but when a seizure happens, its big lightening strikes on the right side. Again, this was done at a hospital connected to a medical university.

    Oh yeah, I also have memory issues all the time.
    Save room for dessert!
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