Aa
Could you DIAGNOSE me???
Okay, I've never posted before, so I guess I should let you know that I'm female, 26 yrs old, Depression since 2005, I have stress, I do not wear glasses or contacts, I smoke, drink on holidays, I do not use illegal or street drugs, I've had what I consider chronic fatgiue since I had mono at age 14 (yet nobody but me seems to care) and I have always been in good health until Oct 2011. Here's my story:
Oct '11: I had a MIGRAINE for 2 weeks (I didn't know what it was at the time), I went to my primary care provider (PCP). She said Migraine, gave me elavil.
Nov '11: Still having migraines, but only a couple times a week, however my left cheek had been NUMB and TINGLING (at the same time) off and on during the day, constantly (I still have this, if it does go away for a week, it always comes back). So my PCP sends me for a brain CT.
BRAIN CT: Normal. Good News.
Jan '12: Still having Mirgrines, still having cheek bone numbness and tingling, and now my neck has electric shocks (on the left side, begins in the middle of my neck and goes up and down at the same time extremely quick, hurts but it's so quick it barely registers). PCP refers me to a NEUROLOGIST.
NEUROLOGIST: Increases my elavil and writes for CEPHADYN (love the cephadyn, never lets me down). I also explain that my SHORT TERM MEMORY isn't the same, My CHIN NUMBS and TINGLES, and she discovered during her exam that everything feels colder on my left side than it does on my right side (although she didn't explain what this means nor if it was normal) She then Orders a MRI of my BRAIN.
BRAIN MRI: 3 BRAIN LESIONS, WHITE ONES. (no tumors, yays!)
NEUROLOGIST: Before she gives me those results, I've told her about my numbness in my left foot, the electricity in my right wrist, the BULGING BLOOD VESSEL in my left temple, the DIZZINESS and LIGHTHEADEDNESS, and the PRESSURE IN MY HEAD WHEN I BEND OVER. She orders an EEG, A WHOLE LOT OF BLOOD TESTS, and a SPINAL TAP.
EEG: NORMAL.
BLOOD WORK: I was tested for high cholestoral, RH, Lupus, Lyme, TIA, and all the usual typing and count and infection and virus. RESULTS: NORMAL.
SPINAL TAP: NORMAL (although my blood pressure dropped, and I thought I was gonna die lol during the proceedure lol, but it didn't actually hurt, so if anyone is reading this and hasta have one and is scared, it honestly isn't at bad as it sounds!)
NEUROLOGIST: I explain about my not being able to name my fingers, as in I get them confused, I call my pinkie finger my ring and my ring my pointer and ect. My left toes in the middle feel like they're overlapped but aren't, I feel blowing and burning and tingling and numbness on my left foot (always feeling something but never all of them at the same time), and my right shoulder goes numb. Also, I FEEL WARM WET WATER RUNNING DOWN THE BACK OF MY THIGH CONSTANTLY. So she tells me all my good news on my tests and tells me that she doesn't want to blame all that on my chronic migraine and tells me I probably have NEUROPATHY and orders a EMG, she tells me that even if I have neuropathy that it's not bad, I can live with it just fine. She writes Neurotin.
EMG: NORMAL. (Although my sister and dad have both had this test done in the past for different reasons and both told me they hurt, yet I wasn't worried because I made it thru childbirth and a spinal tap, so I figured I could handle anything. And my EMG didn't hurt at all... I was concerned that it didn't hurt, but the lady doing the test told me that pain affects people differently.)
NEUROLOGIST: Tells me that my EMG was normal. Then says, quote, "I'm certain that I've ran enough tests to know that whatever is wrong with you, it isn't bad" Good to know that it's not bad, ***** to know it doesn't have a name! Then she tells me that I have anxiety. She tells me that instead of coming back in a month that I can come back in 3 months. She writes me more Neurotin and increases the doseage.
DURING THE LAST 3 MONTHS: I have been having all the above symptoms, and these new ones: my SCALP goes NUMB and TINGLES, sometimes feeling as if the hair is standing up. My outter muscles on my left thigh and leg go numb. I wake up with NUMB HANDS or NUMB FINGERS, sometimes just one hand, other times both. Sometimes they're numb during the day.
My sister swears she saw me have SEIZURES during my "sleep", grand mal like with jerking and grinding of my teeth, eyes white, ect. (Our dad has epilepsy, so we know what a seizure is).
Also, later that same week, I was walking out of Wal~Mart and all of a sudden it felt as if I was only my feet and my head, like imagine two feet with a head connected was walking thru a parking lot... yet my arms and legs were working fine, they weren't numb, it was like they was there, but my body wasn't registering that they were attached. I also felt funny in the head during this episode.
Then a few days later I was driving my cousin home, when it hit me. (I don't know what it was, but it definately hit me). My whole head began tingling with big size tingles and my body was numbish, I saw myself driving from up and behind. Dare I call it an OUT OF BODY EXPERIENCE? I couldn't speak... my cousin realized something was wrong (although I don't know how she knew, maybe my face had a weird look or something? Dunno, I was seeing the back of my head). She told me where to pull over. I pulled over, I had a urge, a yearning to lay on the gravel belly down... I fought that urge and just wandered around aimlessly for 15 mins til it stopped. Then I drove her home.
The next day I stepped out onto the porch for a smoke, BAM, felt like I was getting shot with a billion pellets in the face... and I also felt the exit wounds (btw, I just had de ja vu again, this is becoming common also). This imaginary gunfire HURT SOOOO BAD. I just stood there for about a minute til it passed.
A couple weeks later I woke up, took my neurontin at 11am, and by 3pm I was so tired that I just fell asleep abrubtly. I woke up at 5:30pm, staggering. I was fully awake about 30 mins later, doing chores and such, yet I was still staggering. I staggered for 3 hours. Nothing was numb, yet I would walk into and with the walls, could not walk a straight line, and well it was like I was drunk, except my head was fine and my vision was fine and I hadn't had anything to drink... not even within the month!
One evening I had a blurry patch in my bottom left corner of left eye vision field. A month or so later I lost my vision in my right eye, for 2 hours that I'm aware of, I went to sleep like that, when I woke up, my vision was fine.
This is probably the strangest thing, for the past week, my left foot... ummm how do I put this... okay, so, try to imagine a world where your left foot urinates... now imagine that it can't hold it and has accidents on itself, but then it's not actually wet. But it is warm, and you can feel sometimes up to 7 streams running all over your foot. And sometimes while your foot is warm and wet and "peeing" on itself... your pelvic area feels uncomfortably hot... like the way the contrast during a head ct makes you feel.
PCP: Followup appt. I explained some of what I've written here, and told her about all my test results, she said she didn't feel like the area neurologist was taking good care of me and is currently setting me up with an appt at UVA.
DOES ANYONE KNOW WHAT IS WRONG WITH ME? DOES ANYONE HAVE ANY OF MY SYMPTOMS? DOES ANYONE THINK SOMEONE SHOULD'VE DONE A MRI OF MY SPINAL CORD? AM I JUST LOOSING MY MIND? COULD SOMEONE PLEASE REPLY... EVEN IF YOU JUST WANT TO MAKE FUN OF ME. THANKX FOR TAKING TIME TO READ THIS. AND I'M SORRY IF I HAVE MISSED ANY TYPOS.
Oct '11: I had a MIGRAINE for 2 weeks (I didn't know what it was at the time), I went to my primary care provider (PCP). She said Migraine, gave me elavil.
Nov '11: Still having migraines, but only a couple times a week, however my left cheek had been NUMB and TINGLING (at the same time) off and on during the day, constantly (I still have this, if it does go away for a week, it always comes back). So my PCP sends me for a brain CT.
BRAIN CT: Normal. Good News.
Jan '12: Still having Mirgrines, still having cheek bone numbness and tingling, and now my neck has electric shocks (on the left side, begins in the middle of my neck and goes up and down at the same time extremely quick, hurts but it's so quick it barely registers). PCP refers me to a NEUROLOGIST.
NEUROLOGIST: Increases my elavil and writes for CEPHADYN (love the cephadyn, never lets me down). I also explain that my SHORT TERM MEMORY isn't the same, My CHIN NUMBS and TINGLES, and she discovered during her exam that everything feels colder on my left side than it does on my right side (although she didn't explain what this means nor if it was normal) She then Orders a MRI of my BRAIN.
BRAIN MRI: 3 BRAIN LESIONS, WHITE ONES. (no tumors, yays!)
NEUROLOGIST: Before she gives me those results, I've told her about my numbness in my left foot, the electricity in my right wrist, the BULGING BLOOD VESSEL in my left temple, the DIZZINESS and LIGHTHEADEDNESS, and the PRESSURE IN MY HEAD WHEN I BEND OVER. She orders an EEG, A WHOLE LOT OF BLOOD TESTS, and a SPINAL TAP.
EEG: NORMAL.
BLOOD WORK: I was tested for high cholestoral, RH, Lupus, Lyme, TIA, and all the usual typing and count and infection and virus. RESULTS: NORMAL.
SPINAL TAP: NORMAL (although my blood pressure dropped, and I thought I was gonna die lol during the proceedure lol, but it didn't actually hurt, so if anyone is reading this and hasta have one and is scared, it honestly isn't at bad as it sounds!)
NEUROLOGIST: I explain about my not being able to name my fingers, as in I get them confused, I call my pinkie finger my ring and my ring my pointer and ect. My left toes in the middle feel like they're overlapped but aren't, I feel blowing and burning and tingling and numbness on my left foot (always feeling something but never all of them at the same time), and my right shoulder goes numb. Also, I FEEL WARM WET WATER RUNNING DOWN THE BACK OF MY THIGH CONSTANTLY. So she tells me all my good news on my tests and tells me that she doesn't want to blame all that on my chronic migraine and tells me I probably have NEUROPATHY and orders a EMG, she tells me that even if I have neuropathy that it's not bad, I can live with it just fine. She writes Neurotin.
EMG: NORMAL. (Although my sister and dad have both had this test done in the past for different reasons and both told me they hurt, yet I wasn't worried because I made it thru childbirth and a spinal tap, so I figured I could handle anything. And my EMG didn't hurt at all... I was concerned that it didn't hurt, but the lady doing the test told me that pain affects people differently.)
NEUROLOGIST: Tells me that my EMG was normal. Then says, quote, "I'm certain that I've ran enough tests to know that whatever is wrong with you, it isn't bad" Good to know that it's not bad, ***** to know it doesn't have a name! Then she tells me that I have anxiety. She tells me that instead of coming back in a month that I can come back in 3 months. She writes me more Neurotin and increases the doseage.
DURING THE LAST 3 MONTHS: I have been having all the above symptoms, and these new ones: my SCALP goes NUMB and TINGLES, sometimes feeling as if the hair is standing up. My outter muscles on my left thigh and leg go numb. I wake up with NUMB HANDS or NUMB FINGERS, sometimes just one hand, other times both. Sometimes they're numb during the day.
My sister swears she saw me have SEIZURES during my "sleep", grand mal like with jerking and grinding of my teeth, eyes white, ect. (Our dad has epilepsy, so we know what a seizure is).
Also, later that same week, I was walking out of Wal~Mart and all of a sudden it felt as if I was only my feet and my head, like imagine two feet with a head connected was walking thru a parking lot... yet my arms and legs were working fine, they weren't numb, it was like they was there, but my body wasn't registering that they were attached. I also felt funny in the head during this episode.
Then a few days later I was driving my cousin home, when it hit me. (I don't know what it was, but it definately hit me). My whole head began tingling with big size tingles and my body was numbish, I saw myself driving from up and behind. Dare I call it an OUT OF BODY EXPERIENCE? I couldn't speak... my cousin realized something was wrong (although I don't know how she knew, maybe my face had a weird look or something? Dunno, I was seeing the back of my head). She told me where to pull over. I pulled over, I had a urge, a yearning to lay on the gravel belly down... I fought that urge and just wandered around aimlessly for 15 mins til it stopped. Then I drove her home.
The next day I stepped out onto the porch for a smoke, BAM, felt like I was getting shot with a billion pellets in the face... and I also felt the exit wounds (btw, I just had de ja vu again, this is becoming common also). This imaginary gunfire HURT SOOOO BAD. I just stood there for about a minute til it passed.
A couple weeks later I woke up, took my neurontin at 11am, and by 3pm I was so tired that I just fell asleep abrubtly. I woke up at 5:30pm, staggering. I was fully awake about 30 mins later, doing chores and such, yet I was still staggering. I staggered for 3 hours. Nothing was numb, yet I would walk into and with the walls, could not walk a straight line, and well it was like I was drunk, except my head was fine and my vision was fine and I hadn't had anything to drink... not even within the month!
One evening I had a blurry patch in my bottom left corner of left eye vision field. A month or so later I lost my vision in my right eye, for 2 hours that I'm aware of, I went to sleep like that, when I woke up, my vision was fine.
This is probably the strangest thing, for the past week, my left foot... ummm how do I put this... okay, so, try to imagine a world where your left foot urinates... now imagine that it can't hold it and has accidents on itself, but then it's not actually wet. But it is warm, and you can feel sometimes up to 7 streams running all over your foot. And sometimes while your foot is warm and wet and "peeing" on itself... your pelvic area feels uncomfortably hot... like the way the contrast during a head ct makes you feel.
PCP: Followup appt. I explained some of what I've written here, and told her about all my test results, she said she didn't feel like the area neurologist was taking good care of me and is currently setting me up with an appt at UVA.
DOES ANYONE KNOW WHAT IS WRONG WITH ME? DOES ANYONE HAVE ANY OF MY SYMPTOMS? DOES ANYONE THINK SOMEONE SHOULD'VE DONE A MRI OF MY SPINAL CORD? AM I JUST LOOSING MY MIND? COULD SOMEONE PLEASE REPLY... EVEN IF YOU JUST WANT TO MAKE FUN OF ME. THANKX FOR TAKING TIME TO READ THIS. AND I'M SORRY IF I HAVE MISSED ANY TYPOS.
So what are they doing for your severe migraines? Most of the time you don't have any test results showing why you have the migraines. If you have the migraines frequently, have you been prescribed a daily preventative migraine medication? If those haven't worked, what about nerve block, trigger point or Botox injections? And know that if you take any pain reliever more than 2x a week, you risk rebound migraines. Or maybe you're not bothered enough by your severe migraines to need help with them. Am I offtrack?
The UVA Neurologists said that I don't have Lyme or Anxiety... it's just that my migraines are "extremely severe" And I'm not crazy... although they gave me "the test" they asked me to say the days of the week backwards, they asked me what random objects in the room was, and the day, date, and President. So I guess I just have really weird migraineness... They didn't get any of my test results sent to them in time, they didn't comment much on my 3 brain lesions... just that everyone is allowed to have 1 brain lesion per decade of life and it be normal, so mine sounded fine, but they said that the pattern and something to do with the contast stuff determines if it's normal lesions or not, and since they couldn't see my film, they couldn't speculate much. They didn't recommend any further testing and they think that I shouldn't be on Neurontin since I don't have epilepsy or neurophathy. And they didn't like that my original neuro put me on Cephadyn... because come to find out, thats a narcotic!
Good idea to get a second opinion. Take in copies of all your test results. And best if you can have someone like your sister who can confirm your seizure and your mental health being good. You shouldn't have the problems that you are experiencing. And don't forget to mention your family members' medical problems. Good luck.
NOTE: I just copied those update from another form that I use. I wanted to keep things current. Also, after coming off the Zoloft, I feel some better, apart from my depression lol Imagine that, without anti-depressants, I'm going to be depressed. Hmmm.
Out-of-Body-Experience.... I just know that makes me sound hella crazy. But I've only had that one.
Question... Do crazy people have out of body experiences? And what's the proper term for crazy people, I'm sure they don't appericate me calling them that.
Question... Do crazy people have out of body experiences? And what's the proper term for crazy people, I'm sure they don't appericate me calling them that.
I'm really not anxious about my symptoms... except for the out of body thing, that creeped me out. I'm just concerned that if it is something and I either ignore it or the dr's won't retest or try new things or something that it'll turn out to be something and by the time it's discovered it'll be too late. And with my daughter being completely dependent on me, I really really really need to be around & able for her.
Maybe I got a new disease... I had actually just told my sis yesterday when she was telling me that maybe I had something new, that if they let me name it, I was gonna call it "Tiffani Loves Johnny Depp" lol... maybe that would grab his attention :P
I am gonna go to UVA for a second opinion... but what if they treat me as crazy too? If you all just knew me, you'd know that I am the most responsible/level headed person ever... even my mom and dad tell me I have better sense than they have lol. And I've always been like this, even as a child... I think I have an "old soul".
I do get nausea a bunch. I get light headed when I get up from a seated postition, and sometimes when I go from standing still to walking.
When My sis woke me up from my "seizure" that day, I felt strange in the head, kinda numb, but I was fine, I didn't feel anything wrong with my chest and I knew who I was, who my sis & kid were, and what we was doing.
I hadn't gave it much thought, but I sometimes smell or taste things that aren't there. Like I once ate a kitkat and it tasted like black berries, the entire candy bar tasted like that. When I light a cigarette (this strangeness occurs about once per week) it will taste like fried chicken, or bubblegum, or chocolate, or other random things. Sometimes I smell things that aren't there... like McDonalds in my hallway, or a pizza in my closet, or flowers in my kitchen... and nobody else can smell it. Oh and everytime, and I mean everytime I eat anything my left nostril runs (clear fluid)... that's been going on for 4-5 months. And only once (thankfully) I bent over to put my hair up and both nostrils poured clear fluid out... it nearly drowned me... I threw my head back and it kept pouring, soaked my shirt. Total weirdness I know.
I just think my symptoms sound crazy... cause, well, you should see the faces when I tell people.
And sometimes my necks feels really long... even tho it's not. Or I'll feel really short. And me feet feel like I'm always stepping into a hottub... comes and goes all day everyday for the past month.
And my fav part about telling the Neuro, is that when I start telling her these things, she shuts me down. It's like she doesn't even want to listen to me anymore.
I know there are people out there with way bigger problems than mine, and I feel bad for even posting... cause I should just ignore it and go on with life, I've got all my limbs, and I get around good, and I'm young, what more should a person really want.
Oh and even tho the neuro says I didn't have a seizure, and I don't have neuropathy... she's still keeping me on Neurotin. Why???
I do get nausea a bunch. I get light headed when I get up from a seated postition, and sometimes when I go from standing still to walking.
When My sis woke me up from my "seizure" that day, I felt strange in the head, kinda numb, but I was fine, I didn't feel anything wrong with my chest and I knew who I was, who my sis & kid were, and what we was doing.
I hadn't gave it much thought, but I sometimes smell or taste things that aren't there. Like I once ate a kitkat and it tasted like black berries, the entire candy bar tasted like that. When I light a cigarette (this strangeness occurs about once per week) it will taste like fried chicken, or bubblegum, or chocolate, or other random things. Sometimes I smell things that aren't there... like McDonalds in my hallway, or a pizza in my closet, or flowers in my kitchen... and nobody else can smell it. Oh and everytime, and I mean everytime I eat anything my left nostril runs (clear fluid)... that's been going on for 4-5 months. And only once (thankfully) I bent over to put my hair up and both nostrils poured clear fluid out... it nearly drowned me... I threw my head back and it kept pouring, soaked my shirt. Total weirdness I know.
I just think my symptoms sound crazy... cause, well, you should see the faces when I tell people.
And sometimes my necks feels really long... even tho it's not. Or I'll feel really short. And me feet feel like I'm always stepping into a hottub... comes and goes all day everyday for the past month.
And my fav part about telling the Neuro, is that when I start telling her these things, she shuts me down. It's like she doesn't even want to listen to me anymore.
I know there are people out there with way bigger problems than mine, and I feel bad for even posting... cause I should just ignore it and go on with life, I've got all my limbs, and I get around good, and I'm young, what more should a person really want.
Oh and even tho the neuro says I didn't have a seizure, and I don't have neuropathy... she's still keeping me on Neurotin. Why???
UPDATE: my (original) NEUROLOGIST told me that it's all anxiety... even tho I don't even own a brown paper bag. Oh and that I should "get help". So apparently, I'm just "bat-!**@!-crazy"??? I know I sound it... I'm surprised they didn't lock me up and toss the key.
My sister explained the "episode" she saw me have in my sleep. The Neuro listened and then told my sister it's anxiety! Cause my EEG in April was normal. Nevermind that my sis had seizures as a child, our cousin has epilepsy, our father has epilepsy, and so does my daughter. My sis isn't pleased with this. I thought if the Neuro wasn't believeing me, that she would believe my sis aka eye witness.
Here's what I don't get... I don't have that fear that's associated with anxiety... I do have stress, but I handle it well... like my sis told the dr... I just come up with a game plan to overcome w/e is stressing and/or suck it up and move forward. I should also mention that I don't have any bills and I've got a wonderful boyfriend of nearly 4 yrs that spoils me. Now, my daugther does have special needs and doesn't walk... yet during the past 3 yrs (she's 7) I've finally came to accept what I can not change, and I'm actually proud when I'm in public strolling her around in her wheelchair... cause even tho she is physically disabled, my daughter is the light of my life, my pride and joy, and the sweetest child on Earth. My boyfriend is buying us a minivan next week and we're getting those lil stick family decals, and my daughters is in a wheelchair, gonna be proudly displayed on the back glass. I have her 24/7/365 and always have, always will, cause that's the way I like it... if this isn't coping then I don't know what is.
My sister explained the "episode" she saw me have in my sleep. The Neuro listened and then told my sister it's anxiety! Cause my EEG in April was normal. Nevermind that my sis had seizures as a child, our cousin has epilepsy, our father has epilepsy, and so does my daughter. My sis isn't pleased with this. I thought if the Neuro wasn't believeing me, that she would believe my sis aka eye witness.
Here's what I don't get... I don't have that fear that's associated with anxiety... I do have stress, but I handle it well... like my sis told the dr... I just come up with a game plan to overcome w/e is stressing and/or suck it up and move forward. I should also mention that I don't have any bills and I've got a wonderful boyfriend of nearly 4 yrs that spoils me. Now, my daugther does have special needs and doesn't walk... yet during the past 3 yrs (she's 7) I've finally came to accept what I can not change, and I'm actually proud when I'm in public strolling her around in her wheelchair... cause even tho she is physically disabled, my daughter is the light of my life, my pride and joy, and the sweetest child on Earth. My boyfriend is buying us a minivan next week and we're getting those lil stick family decals, and my daughters is in a wheelchair, gonna be proudly displayed on the back glass. I have her 24/7/365 and always have, always will, cause that's the way I like it... if this isn't coping then I don't know what is.
That's interesting. I've never heard of anyone experiencing it before. Still wish you the best.
Yeah, they started the Neurontin because of my strange sensations. I'm on 100mg 2xday. The reaction you had to it actually reminds me of the way prozac made me feel. It was like my mind said "No, don't talk to them" and so I didn't lol. I stopped it after 4 months because my body never got used to it.
P.S. Yes, I understand that you had a lot of your symptoms before the Neurontin, if I understood correctly, but your out of body experiences were what triggered my response.
I'm glad to hear that you will get a second opinion on your condition soon.
I have to wonder if you might have a bad reaction to your Neurontin. Neurontin caused me to feel almost out of my body. At the lowest dose possible, I felt catatonic. I have never had a reaction like that to any of the many, many medications that I have taken. I just sat in my chair feeling like I couldn't move. When my husband came into the room, I couldn't get any motivation to even turn my head to look at him. It was the very strangest feeling that I have ever experienced.
Other than that, I can't tell you what might be the cause of your symptoms. Good luck with your new doctor.
I have to wonder if you might have a bad reaction to your Neurontin. Neurontin caused me to feel almost out of my body. At the lowest dose possible, I felt catatonic. I have never had a reaction like that to any of the many, many medications that I have taken. I just sat in my chair feeling like I couldn't move. When my husband came into the room, I couldn't get any motivation to even turn my head to look at him. It was the very strangest feeling that I have ever experienced.
Other than that, I can't tell you what might be the cause of your symptoms. Good luck with your new doctor.
Have an Answer?
You are reading content posted in the Migraines and Headaches Community
Top Neurology Answerers
Allentown, PA
Queen Creek, AZ
Queensland, Australia
Trinity , TX
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
