New Intro

[dweiss29]

Hi Everyone,

I'm a bit embarrassed to be posting because I might be a bit premature in joining this site. I was hoping I could share a bit of information about myself and wondering if anyone might have some insight. Obviously I'm following up with a physician but living in a large city - getting quick healthcare follow up takes some time.

I've noticed some changes in my health for the last several months and starting to think I may have a form of epilepsy. A few months ago, I was helping out in the kitchen and suddenly my vision started to change, my breathing became irregular, my hands started to tingle and then I lost consciousness. I finally went to the doc, had an MRI that come out clear and was put on some meds for a stomach bug (been fighting that for a while). The stomach thing is over, but I'm still having strange sensations that are causing concern. Yesterday I had to travel to a client, and as I was walking through the airport my sense of hearing became irregular - I can't really explain it, but it felt hyper sensitive on some sounds and muffled on others. Again, my breathing started to change, a slight numbness occurred and I was concerned that I was going to black out again. It almost felt as if my mind was disconnected from my body. I thought perhaps I was just tired due to an early flight, sat down, ate lunch and headed to the client site. About 2 hours later during the meeting, again I started getting a tingling sensation down my arms, hearing issues and a sudden change in breathing. I was really embarrassed, got up, took some water and just tried to remain calm. I did fine the rest of the day until this last evening when the above symptoms appeared again. Thinking back, I've noticed that I've had this some of these symptoms very irregularly over the last several years but just always attributed them to fatigue or flu, not epilepsy. As I started reading a bit on this disease, all of the symptoms described fit exactly how I'm feeling - but now I'm a bit afraid of getting this diagnosed. Could anyone share with me if they've experienced these sensations and the type of epilepsy they were diagnosed with? Is the treatment helpful and are you having side affects. I was thinking since my MRI came out clear - that they would of discovered that I have this or is that MRIs don't always find it? Sorry for the long post but hope to hear from you.

Thanks for your time.

 

[RobinN]

Hi D -
What I have learned is that this disorder can come with many different faces. The tests do not always tell the whole story, and can also lead you down wrong paths. What you are discribing does not sound like my daughters seizures however. She has little warning, and is down convulsing for 2-3 min. She has a terrible headache after, and also has quite a few minutes of disorientation. Though with that said, we have been around the block with Rebecca's symptoms and you need to get a thorough evaluation. Do not expect a Neuro to study the situation and see the whole body. They are specialists in the brain and they rarely make connections to other parts of the body. For example, my daughters typically get worse during her monthly cycle, and that tends to confuse a lot of Neurologists.

Some treatment has side effects, such as meds. Other treatment, that you could begin right now is diet. It can have a positive side effect, and be helpful even if this is a momentary disruption in your life.

Be open to the consideration of panic attacks, or even something heart related. Not everything can be seen on an MRI. There are high powered MRI's and an MRA that will look at the bloodvessels of your brain and can rule out other problems.

One thing that has been quite helpful for me is to keep a calendar of events, and try to keep dietary changes, lifestyle disruptions, all recorded. I take this to each and every doctor appt.

Please don't be embarrassed, we are all here helping one another get through each day. It has been a lifeline for me.

 

[speber]

Hello there! I would reiterate what Robin said about feeling comfortable to ask the questions here...this is a great forum for research!

However, and not to throw a big scare here, and AGAIN to back up Robin, these do comes in many 'flavors'...
...I can claim very similar circumstances at times myself and I have the 'Hollywood' seizures where people run screaming! (jk about the screaming part, of course---they just take my wallet while I'm unconscious!)

Seriously, get these things checked out...hopefully they are just a nice, easily reversable 'chemical imbalance' of late due to something you are eating maybe? Good Luck!

 

[Birdbomb]

Welcome dweiss29

Those episodes sound very much like simple partial seizures. I'm not saying they are, only a doctor can deceide that.

Most of my seizures are simple partials. They begin with a heavy breathing and/or a tremor in my right hand. Reality becomes distorted but I am aware and hear everything going on. Most times I am not able to talk. I seldom have much of a post-ictal period after a simple partical.

Get thee to the neurologist and be ye evaluated.

There are also a number of other medical reasons for episodes like this, cardiac, emotional, gastric, hormonal, so it's imparitive that you been seen by a medical professional.

 

[Zoe]

Hi DWeiss,
Robin and Speber hit all the nails on the heads. You need not feel shy about asking questions here and getting support, regardless what may turn out to be causing your spells.
Are you drinking anything with caffeine in it? The irregular breathing and some of the other symptoms [including panic] can be triggered by the caffeine.
I think it can develop over time, like a chemical sensitivity. So, that's just one option to explore.
The other, as Marian mentioned, is DIET, in capitals. There are many ways in which what we eat can increase our risks of having seizures. If you are low on some essential vitamins, esp. B12 and folic acid, this will allow the amino acid homocysteine to accumulate which may increase the risk of having a seizure. MSG, and aspartame, artificial sweeteners, along with intolerance to gluten [protein found in wheat, barely, rye, and oats] are a few others.
Low levels of magnesium are linked to heart palpitations and partial seizures. Correcting any deficiencies and changing your diet so as not to cause them may help you get handle on those spells. Caffeine and other drinks that are diuetics can flush the important minerals out of your system and destabilize your electrolyte balance. Anything you eat that causes an irritation to your gut may set off alarm signals that can trigger panic and the symptoms you are describing.
There are some posts here on the GARD diet and gluten free diet each of which may be worth a try for you, at least a couple of months. Like Speber said, sometimes these spells, and seizures are reversible. Diet was very important in my finally stopping my seizures. Take care,
Zoe

 

[Bernard]

Hi dweiss29, welcome to the forum. :hello:

I agree with Birdbomb, your descriptions sound like simple partial seizures, but you need further testing to be sure.

I was thinking since my MRI came out clear - that they would of discovered that I have this or is that MRIs don't always find it?

MRIs can only show abnormalities like lesions or scarring in the brain which might be focal points for seizure activity, but the lack of any identifiable abnormalities does not preclude one from having seizure activity.

Many people with epilepsy have clear MRIs, CTs and even EEGs.

 

[brain]

:hello: Dweiss

Welcome to CWE -and I agree with
Birdy and Bernard's postings - and
to stick with your Neurologist and
follow up thoroughly and closely.

And in addition:

Bernard is absolutely correct in
stating that MRI, C-Scan (or Cat Scan
or CT Scans), EEG, PET, etc can
all come up as "normal" or "clear"
and you can have Epilepsy, this is
especially true of those with Frontal
Lobe Epilepsy or those that are more
difficult to detect or locate which
they mark it as "unknown origin".

 

[Bernard]

dweiss - I apologize for taking over your thread. How are you doing?

I split the off-topic conversation into it's own thread. dweiss29, I hope you are doing better. Have you seen the doctor yet?