Hi, I Am New To To Dinet And Need Support

[OBXGIRL]

I have been reading the chit chat room discussions. As I sit here and read, I am overwhelmed with emotions. I have been a POTHEAD since Sept.21,2008. Well, long before that,but on that day I was finally told I was not crazy afterall, and a wonderful doctor from UVA actually took the time to put all the symptoms together, listen, and basically just care enough to realize all that was happening had to be something more that stress.

As I read all the symptoms everyone have, the lists, oh my. So do I, with so many. Thoughout the years, the symptoms have always been treated as seperate things. I can go back as far as about 12 when things started. I use to have to walk to school back and forth each day. It was just under a mile, one way. I can remember how hard it was, one time even blacking out on the side of the road in a patch of grass. Waking up and it was night. Making it home, I don't even know how, getting yelled out by my parents. Taken to the doctor only to be told my iron was a tad bit low. Throughtout the years, the symptoms increased, the outcomes were just added to the growing list of " seperate illnesses". And up until 2008, UNKNOWN.

I will take the time soon to add "My Story" to Dinet.

The symptoms always throughout the years were the same. But depending on the doctor, the answers would change. Now, I am 52. I know what I have.

If anyone has had anything similar of the following I would love some insight.

I have seisure like episodes. I have just come from a week at UNC hospital on a video EEG. They used lights and breathing to bring on 2 seperate seisures. Come to find out that the 'TEAM" only deals with Epilepic types. Which we already knew was not my case. Not one person on that TEAM has a clue to POTS. My doctor at UNC is a specialist in POTS, but was not there to SEE for herself. SO of course not monitoring of my pressures or heart was not done other than in a lying down position. Well lying down in the middle of a seisure, it shot to 161/80 with a very low heart rate of 50. Even though we told them to sit me up etc...they said it wasn't nessecary. I have no answers, except that they want me to see a eye specialist, and a internist who could group things together and look into something other than neurological. Oh yeah, guess what, they also had me see a therapist to rule out CRAZY, once again. They ruled out the sugar being to low, as also any blood defeciencies.

I use to know when the episodes where coming on, but now, it is more often, like one everyother week. I have usually been active so to speak when they occur. I call it happy stress, not overworried stress. Which in my reading makes me still feel this is POTS, but, my doctor isn't so sure.

The seisure like episodes are as follows: My body becomes like lead. I feel llike I need to lye down and sleep immediately. I have extreme pressue in the back of my head and neck and shoulders, I feel like my head is bleeding inside, and I can't hold it up, it hangs to the left. My vision changes and my eyes come to a stare. I right side of my body goes limp and I start tremoring. Then I pass out. I am unaware of what I say or do, and it can take hours to days for me to regain my mental and physical self. My heart rate is also very low, and at times it seems that I stop breathing, it beocmes so shallow with grasping for air. It can take a day or so to stop moving or walking without parkinson looking movements. Of course my speech and word processing is also effected.

This can happen when I watch T.V., am outside, even upon waking up in the morning. There is never a certain thing that brings it on that myself or my family can pin point.

I am worried of course for not only myself and the long term as to what this will do to my body, but also for my family. For them to see this. I was once a very independent woman, who now is never left alone. I do not drive anymore of course. Although on a not so funny note, the doctors at UNC stated that I must be glad that since this is not epilepic seisures and can go ahead and drive. Can you believe that one.

Anyway, if anyone has any information or has had the same things happen and can send me in another direction. I would appreciate it.

P.S. my spelling may be off, that foggy brain thing and my hands don't seem to work together.

Everyone, my we all have the blessings of God today, laughter, love, and give thanks for all the little wonders we accomplish today.

Kathleen

[juliegee]

Welcome. Kathleen- so glad you've found us. It certainly took a while . the first thing that comes to mind after reading your post is a type of seizure activity that sometimes occurs during a faint in patients with NMH. It's happened to me once and my grandmother several times. Very scary. Yours seems a little different in that you seem to have a warning it's coming- I don't recall that.

Do some research and see if you can find some more information re. seizure-like activity during a faint.

Hope you find some answers-

Julie

[Noreen]

Kathleen

Sorry for all you have been through but glad you found this wonderful forum.

I am exhausted myself at the moment but thought I would pass on this article in hopes it will help you or your doctor in distinguishing what is going on.

Distinguishing seizure from syncope

wishing you the best

noreen

[issie]

Just wanted to welcome you in.

I don't have seizures like you, but do have the tremors and Parkinson's like gait. It will come and go. Certain lights will bring it on too. I can't stand WalMart because of the lights. I was at first diagnosised with Parkinson's and treated as such for over a year and a half. When that didn't get better or the meds didn't help they then thought I had Multiple System Atrophy. That's when we went to Mayo and got the POTS diagnosis. Still don't really know why the tremors or gait disorder. I practically drag one leg at times, it won't pick up. It takes me days to get over one of these eposoids. It totally wipes me out. So you're not alone, but I don't have an answer either. I figured it was the autonomic nervous system misfiring and it was just affecting these areas of my body. I also do the stare thing and can't talk straight. I sound like I'm drunk or something and can't come up with the right words. The only thing they found was a brain tumor on the lining of the brain and said it shouldn't be what is causing it, but they are watching it to see if it changes or gets bigger. I've also had two TIA's and that really impacted me. It messed up my ability to do math. These of course don't show up on an MRI, but are indicative of a possible stroke that some day WILL show up. I also have Ehlers Danlos and my circulation is awful, so I'm sure that affects the blood to my brain too, not to mention my oxygen levels.

Don't know if this helps any or not. Just hoping something will trigger a thought and something that could be looked at with you.