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Now what????? Vent....PIOG

Posted by on Mar. 31, 2010 at 2:33 AM
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I am thisclose to losing it. I've been having a medical issue for years now, but since I got pregnant with my last baby it became really really bad, he is now 6 months old and it just keeps getting worse. I have been seeing Dr. after Dr. trying to figure out what the heck is going on and how to fix it but so far no one has been able to figure it out. I've seen more specialists than I can count or remember. The most recent being numerous cardiologist and everything with my heart is perfect. They've tried me on nearly every anti-anxiety drug out there over the course of the past years just in case that was the issue, my primary care Dr. is almost 100% certain that it is NOT anxiety. I am now moving on to a neurologist because he thinks it's either a complex migraine issue (minus any actual headaches) or some sort of epilepsy. It's gotten so bad over the past few months that as of today I am no longer allowed to drive until they figure out what the problem is and get it under control. I can't handle this anymore. I feel like i'm going to lose my mind if it isn't fixed soon and i've cried out of fristration and fear everyday for the past week. Anyone else been through this? I am just so scared that they aren't going to figure it out and treat it before it kills me or I am going to have to live the rest of my life like this. I have no idea what to do or where to turn. This is taking literally years and still no answer. I swear if they get the answer I am calling mystery diagnosis. Okay, thanks for listening to my v ent ladies. Oh and to top it all off, I really am starting to think I may be pregnant again. Which just complicates the situation more....I think i'll go get a blood test tomorrow or Fri.

Here are the symptoms....

metallic or sometimes sickening sweet taste in my mouth

heart palpitations

dizziness or occasional fainting/blackouts

numbness and tingling usually on my lips and nose, but occasionally a different random body part

Sudden onset of pressure throughout my whole head and face, not painful though.

A strange feeling in my stomach. It usually starts off just odd feeling, not sick or painful then like i'm going down a huge drop on a rollercoaster, like it just feels like a sinking type sensation.

And I see flashing lights alot.

And according to the people around me I go ghost white in my face and apparently I just kind of zone out a lot of times, like they say I just stare off at nothing.

And i'm losing gaps of time and my memory in general is just going. I don't know how many times in the recent months that I have cooked a meal and gone back hours later and realized that I left a burner on and for who knows how long. I'll say and do things that I have no memory of doing, even minutes later I have no clue.

This all happens in "episodes" I have 1- 10 a day and every episode this is what happens.

And the strange feelings and the heart palpitations are really scary at the time and then after the fact I get really scared about the whole memory issue. At first I could have sworn it was anxiety I would have bet my life on it. But at this point i'm with the Dr.  and neither of us think thats what it is anymore.

Mama of twin girls


Samantha Nicole  October 28, 2006


Kalia Jade October 29, 2006


Daniel James September 21, 2009

by on Mar. 31, 2010 at 2:33 AM
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Replies (1-6):
LIZARD66
by Member on Mar. 31, 2010 at 10:30 AM

Are you aware through them? They sound like simple partials to me. Get in with the neuro ASAP since you're having so many of them.

 

Good luck, and please let me know...

hugging

LIZARD :)

43 yo mom with lifelong epilepsy and other neuro and autoimmune issues, and owner of Epilepsy and Seizure Disorders. Self-advocacy is VITAL to your existence, and it saved my life! Any questions at anytime, please ask!! :)


group hug

cs_1498
by on Mar. 31, 2010 at 12:44 PM

Yes I am aware through them. I have a neuro appt. today but who knows how long it will take him to get the testing done. I'm just so frustrated.

Quoting LIZARD66:

Are you aware through them? They sound like simple partials to me. Get in with the neuro ASAP since you're having so many of them.

 

Good luck, and please let me know...

hugging

LIZARD :)


Mama of twin girls


Samantha Nicole  October 28, 2006


Kalia Jade October 29, 2006


Daniel James September 21, 2009

kmichelleg
by New Member on Apr. 4, 2010 at 5:25 PM

Hi, have they checked your liver? When there are things wrong with the liver it can do crazy things to the rest of your body and is hard to diagnose. But I take dilantin and I was overdosed on it over and over, one time almost a year before they figured it out. When I say they, I mean and epitologist at Barrow's Neurological, one of the most famous neurological phacilities in the United States.

But I had a dilantin level of 54. It made me blind, confused. I couldn't walk straight. I didn't want anything to do with food. But one thing that catches my attention was the metallic taste you have in your mouth and the fact that it happens a few different times a day. You'll go back to pretty much normal, being able to see, walk straight, function, and the all of a sudden it happens again.

Do you take any medications? The heavier they are the more likely it is to happen but it can happen to any medication. And the doctors don't pay close enough attention to what can be very obvious. I guess because they figure it can't be that. But you can get toxic. By any medication, and if it's going through your liver then it can do these things, what if that's what it is but some other medication that is processed through someother organs, but is making you toxic and that's how your body is handling it.

Turned out to be my problem and it took them a year and it was every blood test I ever took.  Get your own medical records and go through them. The blood tests tell you what is high or low if they aren't in the normal range. It was easy to figure out, just going through them and reading them. I couldn't believe how it was right there in front of me, but it took them over a year to figure it out.

I've gone through alot of what of what you are talking about. But I am epileptic, and my hormones have everything to do with it,.

I hope this helps, most of all know that you need to take control of yourself. It was a hard lesson for me to learn that it has been a very rare thing to find a Doctor that can be trusted. Especially if they are neurologists. Sorry to sound so pessemistic, but it's been a hard lesson learned over and over. So the least I can do is pass on my experiences. Good luck and God Bless.

 

cs_1498
by on Apr. 4, 2010 at 5:47 PM


Quoting kmichelleg:

Hi, have they checked your liver? When there are things wrong with the liver it can do crazy things to the rest of your body and is hard to diagnose. But I take dilantin and I was overdosed on it over and over, one time almost a year before they figured it out. When I say they, I mean and epitologist at Barrow's Neurological, one of the most famous neurological phacilities in the United States.

But I had a dilantin level of 54. It made me blind, confused. I couldn't walk straight. I didn't want anything to do with food. But one thing that catches my attention was the metallic taste you have in your mouth and the fact that it happens a few different times a day. You'll go back to pretty much normal, being able to see, walk straight, function, and the all of a sudden it happens again.

Do you take any medications? The heavier they are the more likely it is to happen but it can happen to any medication. And the doctors don't pay close enough attention to what can be very obvious. I guess because they figure it can't be that. But you can get toxic. By any medication, and if it's going through your liver then it can do these things, what if that's what it is but some other medication that is processed through someother organs, but is making you toxic and that's how your body is handling it.

Turned out to be my problem and it took them a year and it was every blood test I ever took.  Get your own medical records and go through them. The blood tests tell you what is high or low if they aren't in the normal range. It was easy to figure out, just going through them and reading them. I couldn't believe how it was right there in front of me, but it took them over a year to figure it out.

I've gone through alot of what of what you are talking about. But I am epileptic, and my hormones have everything to do with it,.

I hope this helps, most of all know that you need to take control of yourself. It was a hard lesson for me to learn that it has been a very rare thing to find a Doctor that can be trusted. Especially if they are neurologists. Sorry to sound so pessemistic, but it's been a hard lesson learned over and over. So the least I can do is pass on my experiences. Good luck and God Bless.

 

Thank you for your reply. I am not on any meds at the moment, but at the time when this all started getting bad they had me on all different types of painkillers for my back injury. And it does happen more often when I am back on them, like right after my c-section and what not, but for the most part I am not taking any meds. Not even OTC Tylenol. Is there a chance that my body is still overloaded on those meds even though I haven't taken any in months??? I wouldn't think so, but I wouldn't know for sure.

Mama of twin girls


Samantha Nicole  October 28, 2006


Kalia Jade October 29, 2006


Daniel James September 21, 2009

Nammers
by New Member on Apr. 7, 2010 at 4:41 PM

 I agree that it sounds similar to what I experience with Simple Partial Seizures.  I usually get a very bad headache and experience alot of anxiety immediatly after an 'episode'.  I'm sorry you've been dealing with this for so long without any answers.  Hopefully the Neurologist can shed some light on whats going on or at the very least rule somethings out.

Nams

TojoFlowers
by New Member on Apr. 8, 2010 at 1:40 PM

sounds like partial seizure to me. get all the tests neuro will give you, cat scan, mri, sleeping/awake brain scans, the works, and if they don't find anything, go see someone else, a neuroseizure (specialist) maybe. I  know it is frustrating, stay strong!

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