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Newly Diagnosed Autonomic dysfunction, POTD

Hi, I'm new to this forum. I hope someone can help. Has anyone been going through this??  I've been dealing with anxiety about having an episode being around people. When I have problems, I normally get confused, foggy brain, left face goes numb, arm is heavy and eyes are funny, breathing seems different as well. Bp used to go really low prior to me starting the florinef. I have had recent episodes of my lower leg shaking uncontrollably twice recently. Over the last 3months, I've had episodes of fainting, also staring episodes "seizure like", but I am aware, just out of it and cannot talk,  along with 3 bad seizures shaking all on the floor that I do not recall. I had seizures worked up at Cleveland clinic, and they assure me the seizures are not from epilepsy. Since I've start florinef, seizures are not occurring thank the lord. But I still have episode of confused, foggy brain, left face goes numb, arm is heavy and eyes are funny, breathing difficulty at times when I have done too much or have attempted to exercise. Heart palpitations occur at all different times. I has even come on when I got stressed out. I've also noticed it gets much worse prior to my period. I feel so out of control with this. I was a healthy, working, active person in Sept, now I feel like my life has been taken away from me. I feel like I am going crazy.
**Autonomic testing done at Cleveland Clinic Florida, showed Autonomic dysfunction, also told I have POTS, they are not sure why I am having autonomic dysfunction. They've been testing me for everything, and I''m so exhausted.
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Avatar universal
I have been dealing with multiple symptoms for almost 2 years now.  I was a healthy 28 year old female working in the medical field for many years and continuing to go to school.  After my second daughter, 3 months post partum I started having "episodes" of severe Tachycardia and Syncope for no apparent reason.  I sought the help of a Cardiologist who sent me to an Electrophysiologist.  Tilt table testing was done and confirmed that I had Autonomic Dysfunction.  I was started on a Beta Blocker twice a day.  That seemed to help briefly and then the episodes just kept happening several times a week and sometimes several times a day.  I then was put on Florinef because the Beta Blocker was lowering my blood pressure too much.  My episodes became so severe that I had to quit my job and school.  Nothing I seemed to do made them any better or triggered them that I could recall.  I can say that, they would increase right before my monthly cycle and during my cycle and after eating.  I also started to develope migraines on a monthly bases.  So for months, I have been in limbo trying to deal with what I called episodes until I started having full blown seizures.  The seizures are occuring up to 5 times a week and intensify during my period as well.  Before I have a seizure, I have learned that my heart rate increases and I become very confused, can not speak, and suddenly just drop into full body convulsions.  I have recently went into the Epilepsy monitoring unit and have been told that it is not Epilepsy.  So, I have had cognitive testing done and am currently awaiting the results.  The doctors impression is that the seizures are coming from a lack of oxygen to the brain that has been occuring since the beginning of what I called episodes.  The fact of the matter is that this has been going on so long, that it has caused some brain damage and nothing seems to be helping to stop the seizures/heart issues.  I am at a loss as to how a person like myself goes from being a healthy, productive, and active mother and wife to a person with such disabling symptoms.  I have complied with everything the doctors have suggested but nothing is really working.  The medications help, but only lesson the severity of the episode/seizure.  I have become so frustrated not having a clear cut prognosis and healthcare system that understand what it is like for a patient like myself to experience this on a daily basis.  I feel like a prisoner to my own body and that I have lost complete control over it's actions.  I have a huge list of other problems that I deal with on a regular basis but my biggest concern is my heart and the seizures at this point.  I would love to hear about anyone else who has experienced anything similar.
2078882 tn?1333486061
I have had seizures with the POTS/Dysautonomia, it is scary and very disconcerting to feel like you cannot control it. I had all the cardio tests and a tilt table which was not conclusive, but I am still struggling with the daily health issues. I am getting better, slowly but surely. I wear compression hose, which seem to keep my blood from pooling in my legs and do a variety of other things to try to maintain some form of normalcy for myself. If I dont feel well, or am dizzy I stick close to home and am concerned for someone besides my spouse to see me have a seizure!
Hang in there! Have your electrolytes been checked? My experience has been that if I can keep the autonomic dysfunction under control fairly well I have less issues. Message me if you want more information!
967168 tn?1477584489
I'm so sorry you're going through this; I know what you're feeling.   I've lived for 36+ years with arrhythmia's and some type of ans issues so I've gotten used to it;  but 3 years ago after an ablation my whole world turned upside down.

My symptoms that were controllable with the right rest, eating and exercise etc,  worsened over night and became so uncontrollable I didnt know day from night and up from down when I was going through my episodes.

Nothing the dr's have done have done or suggested/tried has worked for me.  Meds, lifestyle interventions/changes and even a pacemaker/defibrillator to stop the bp/hr extreme changes have helped.

The first cardio I saw thought I was having absent seizures but a neuro did tests and said no; so they have no clue what was going on.

For now I've learned to avoid any triggers I've found, such as stress, not sleeping, heat/cold extremes, standing for too long and a varied list of other things...

sometimes there are no answers but I hope you at least find your triggers and a way to cope with things
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