Help (long but please read!

Lily

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Hello
i am not diagnosed with any kind of epilepsy, but i am very worried about some events ive had in recent years and am trying to get as much info as possible as to what is wrong with me. In 2005 i started getting dizzy spells, where i'd feel light headed and my eye sight would dim and go fuzzy and i sometimes get pins and needles through my body. I also started getting really tired all the time and got bad headaches. The doctors eventually sent me to hospital for tests and they said i just have migraines. One day in nov 05 i felt strange and lost consciousness and fell backwards onto a table, which woke me and i had a massive headache and went to bed. Then about a year ago (stilll frequently having the dizzy spells) i was sitting down and i got a sudden strange feeling through my body and i thought i was going to be sick so i got up to go the bathroom and i got pins and needles through my whole body and couldnt control my body properly and my eye sight went dim and i managed to get myself on the ground before i colapsed.

Around 9.30 wednesday evening I walked my boyfriend to the bus stop and we were talking. I was sitting down at the time and I suddenly got a really strange feeling through my body and felt like I was going to be sick. My eye sight went dim and fuzzy, my whole body got pins and needles and started going numb.. I remember thinking to myself I have to focus, and I started punching the glass of the bus shelter (and apparently biting my lip) then I lost consciousness. I woke as my boyfriend was trying to lift me up, he got me on my feet and I lost consciousness again for a brief second. The only thing I can compare how I was feeling to is that second after you awake from an general anesthetic and you don’t know anything, who you are, where you are and you have no control of your body. It was just like that.. My boyfriend was holding me up and he told me to give him my hand and I became aware that I couldn’t move my hands, they a were clenched up and no matter how hard I tried I couldn’t move them. Eventually I got really bad pins and needles through my hands and the feeling came back. He walked me back home as I wasn’t really able to get back alone. I ended up crying because i was so frightened then i got a bad headache and felt tired. Felt quite strange most of the day after.

I asked him what happened to me and he said that I went really quiet and was punching the glass and biting my lip then I slumped down on the seat and he thought I was messing around then realised I wasn’t so he put his hands under my legs to get me up, I was apparently making weird noises. Then he got me up on my feet which was when I regained consciousness. My parents refuse to believe anything is wrong with me and wont take me to the doctors. As my boyfriend said the only time hes seen anything like what happened to me was when his friend with epilepsy had a seizure. Does this sound like a seizure to any of you?

Thank you for reading
Lily
 
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I'm no doctor, but you certainly described what I would call seizures, including many symptoms that I experience. Certainly you should, if at all possible, get seen by a competent neurologist as soon as you can.
Try to explain your symptoms to your parents as best you can, and be sure to be respectful toward them when you do. As a father, nothing shuts my listening abilities down quicker than perceived disrespect. This is a problem that most parents have, and it sometimes makes it difficult for good communications to happen.
Also, keep a good journal of your symptoms, as this can help in reaching a proper diagnosis.
Most of all, don't give up.
 

skillefer

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Hi Lily! Like DB, I'm no doctor....but what you describe sounds like a seizure. I agree with DB about what you should do in regards to keeping a journal, as well as talking to your parents. The only other way to get diagnosed...would be to either visit an Urgent Care facility (take your boyfriend since he was an eyewitness) or to have your boyfriend take you to the ER if it happens again....
 

Bernard

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Hi Lily, welcome to the forum. :hello:

Have you been tested for blood sugar problems (ie. diabetes, hypoglycemia, etc.)?
 
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Oh wow, I agree with all the comments above. See a neuro, keep a journal, all that.

I have the same thing with the hands clenching, pins and needles, and feeling sick. I hate not being able to unclench my hands, because I know at that point I'm going to have a seizure. I try to pry them open sometimes in hopes that it will relieve some stress to know that I can open them, and have less chance of actually falling into a seizure.

I don't know what triggers your seizures, but I'd suggest trying to keep out of stressful situations (which I know isn't always possible), away from flickering lights if they start to make you feel funny (again, not always possible. My first seizure was caused by light flickering through trees on top of being sick).

I wish you the best, with your health and talking to your parents. It can be hard. Do some research, print it out, and share what you know with them. Maybe even invite them onto the forum, things like this are really helpful for family members.
 

Lily

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Thank you very much to everyone who has replied. In 2005 i had several tests in hospital which were: MRI scans, EEG, ECG, blood tests and in 2006 i had a lumbar puncture. And had more blood tests last year. Doctors always say things seem normal, except a slightly low vitamin D and very slightly high pressure when they did the lumbar puncture but apparently none of that is the cause to whats wrong. Doctors pretty much say im fine and dismiss whatever i tell them. I know something is wrong with me and i'm really worried.. if what happened on wednesday happens again i could be anywhere, doing anything and might not be lucky enough to have my boyfriend save me again. I want people to take me seriously and help me.
I asked my mum earlier if she'll get me a doctors appointment and she got annoyed and said theres nothing wrong with me.. i dont know what to do anymore
 

Lily

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Can you make the appointment Lily?
I know it sounds stupid but i'm too scared to. And now i'm doubting myself because people keep telling me its nothing. At the time it was the scariest thing i've been through but now i keep thinking maybe everyone is right and i'm just over reacting. I really just don't know what to think or feel right now
 

brain

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Lily:

Have you been seen by a Cardiologist? From what I've been
reading, it may be cardiac related and it wouldn't hurt to have
a full cardiac evaluation. In addition, I am wondering have you
consulted this at all with your Primary Care Physician? If not,
you should, he/she should check you out and go from there
and determine which specialist you should be seen. I wouldn't
be surprised if your PCP sends you off to a Cardiologist.

I have both Neurologist and Cardiologist, in fact, I see my
Neurologist shortly and my Cardiologist in a few weeks, because
I have both problems unfortunately.

:?
 

Lily

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Are Cardiologist the people who do ECG's? Because they did one of those in either 2005 or 2006 and apparently nothing showed up.
 

nana1

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Hello Lily
From what i was reading it does sound like a seizure. You shouldhave a journal with you all the time and if anything happens just note it down in book. Have the date, day, time and what went on, what you felt before and after seizure. Having this information will help when you go see doctors as they will see by notebook when and what happened. Tell you primaru doctor and he/she will decide if or who you should see from there. Tell doctor how it feels before the seizure and after.
Welcome to site!!!

nancy
 

brain

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About Cardiology

Cardiologist don't just do ECG (electrocardiograms).

Just because you had an ECG (aka EKG) doesn't really
mean anything. You can have a normal ECG reading at
the moment (just like having an EEG).

A Cardiologist will order up more tests - ranging from
stress test, echo-cardiogram, 24 HR BP/HR Monitoring
(BP - blood pressure / HR - heart rate) - which is mobile,
and plus a 24 hour ECG (EKG) Monitoring - which is known
as Holter Monitoring - which is also mobile - both of those
Monitoring units, you get to go home and come back the
next day. And there's other simple tests as well. You
could have a blockage, valve, and so forth - some people
experience problems while at rest or while active or while
being seated, or getting up suddenly, and so on. The
Cardiologist will study all of this, and he/she may even
order up TEE which is very simple, or other types of tests
as well as extensive blood (lab) work-up as well. You will
be very surprised what all a Cardiologist will do.

They can cover a lot of bases, and you don't even have
to even have chest pains to even realize you're having
cardiac problems!

I'm very familiar with Cardiology and have had a Cardiologist
since my first heart attack when I was only 20, in 1982, and
I had 2 more later on in life (both in 90s). People snip at me
and tell me to "Stop smoking" and I don't even smoke or
drink! :mad: It annoys me when people blurt things like
that at me. But I've also sustained Seizure-Stroke in 2005,
which now has been confirmed - Tonic-clonic with T.I.A.
(Transient Ischemic Attack). So I've been both sides of
the field - Neurology and Cardiology - Lovely picture - NOT!
 

brain

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This book - it's free - an eBook,
I gift it to anyone who wants it,
just create an account and download
it - there's Epilepsy Books - which I
have available in the CWE LIBRARY
which is also free - and you can
download books there too as well
as much, much more ...
it's an eBook - from Cleveland Clinic:


 
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Lily,

Don't doubt yourself..I was told by many Drs. that mine was normal..and anxiety and it was actually seizures. My sleep studies didn't show them..Mine are the worst in my sleep..but I also have smaller ones in the day. They finally showed up on the 2nd eeg..but not completely on the 1st and never on the overnights. They can be tricky to diagnose sometimes. Don't be afraid..it is better to have answers and know what to do. Then you can get help! They surely sound like seizures.
Feel better and good luck with your Dr. appt. You came to a great group for answers and support. Welcome!

Michelle
 

RobinN

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I know it sounds stupid but i'm too scared to. And now i'm doubting myself because people keep telling me its nothing. At the time it was the scariest thing i've been through but now i keep thinking maybe everyone is right and i'm just over reacting. I really just don't know what to think or feel right now
Have they recommended any kind of therapy, or have your parents offered? It has been the best support for my daughter while going through this process.

Just know, we had one of the most well respected neuro centers tell us after a 20 min interview, that Rebecca's seizures were all psychogenic. Those that witness them know different. I walked away from that Univ. center quite confused. They told me many things that later I found out to be absolutely false. I went with my motherly instincts, and my gut intuition and moved forward with care for Rebecca. That eventually led me to Bernard's house he built here at CWE. It allowed me to research, question, share, and believe in myself and my intelligence. I made small steps forward in her care.

Funny how I tend to be a rebel when it comes to medical care. I played by the rules for many many years. This time it just didn't work for me, and I had my precious daughters life on the line. I have taken risks, but they have been having positive results recently.

I made the choice, when I came across a person, or event that was not compassionate, or moving me forward, to not put any energy in to them. Many have tried to derail me, but I decided that negativity would not help. I would only go toward those that were supporting her. This path also has helped... so far.

For me the best and easiest course to begin with was Rebecca's diet. I eliminated anything and everything that might lower her threshold. This can also help with many neurological disorders. Can you discuss this with your mom? Or ask if you can talk with a nutritionist?
 
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