Dizziness has been a part of my life for many years and after sooo many test and an endolymphatic shunt put in the left inner ear, a tilt test told the story. I was diagnosed with Hyperadenergic Pots which was severe. When I have been upright too many hours(for me) for two or three days, I wake up in the middle of the night with the type of dizziness that makes it impossible to walk. Has anybody had this experience?
I have not had it to this extent. But, I can understand your experience. Are you taking any medication to help with the symptoms? The H form of POTS from what I understand is treated differently than the PD form. Im assuming hwen you feel dizzy it is because of low blood pressure, although H forms tends to also have hypertension. Were your catecholmine levels high? Do you know what they were, I'm just curious.
I was diagnosed with POTS in Nov 08. My cat levels were in normal range but my blood pressure os not as low as some others and during my TTT it increased...along with my HR of course.
I keep stumbling. But, I have also had some bad falls. Just a few weeks ago I was walking my dog and stepped into a hole and fell. Of course, stepping in a hole didn't help but, in past, I have been able to catch myself before falling.
I have had diagnosis of Meniere's disease in left ear and that makes me dizzy too. I've not had tilt table test and was suppose to go in for one but doctor has not ordered it yet. Maybe he is wating for my catecholmine blood test.
I did have an echocardiagram and it showed that I do NOT have Mitral Valve Prolapse. The technician said that I have a slight heart murmur at the mitral valve.
Does anyone know about shingles? Are they part of this dysautonomia ?
My wonderful Doctor from UAB has retired and I am on my way to Cleveland Clinic in April, for a new tilt. It was 1992 when I had the first one. It made me so sick very fast (less than three minutes) and my doctor at that time was sure the c levels were not normal, low potassium goes along with it. He was brilliant at treating this disease. It is time for me to try some of the new meds. I have not seen a doctor for two years. You seem to know a lot about this type of dys, There has been a lot of research since I first got sick.The big dizzy in the middle of the night has been called accumulative. Thank you for the post it is good to here from people who understand. Hope you are having a one of your better days.
What you're experiencing, I have as well.
In fact, I still am.
It's completely miserable waking up immediately and being dizzy.
It's not the dizzy where everything is still and you're off balance.
It's where it seems like objects around you are moving/tilting/etc.
The results I have gotten are Vertigo and Dysautonomia.
Here soon I am going to the doctor's to have it checked out.
I wish you the best of luck.
I hope I was help.
I have exactly the same symptoms you describe ....I have lightheadedness 24/7 so bad now that I am currently bedridden......I have not been officiallly diagnosed yet but all fingers point in this direction. When you have the severe episodes of dizziness at night do you also get rapid heart rate??? mine are so bad it feels like I am going to have a stroke...I have literally fallen out of bed due to these....good luck getting yours resolved let me know if you get any answers
I have been housebound and couch bound for the past 6 weeks or so with similar symptoms to yours. Yes my heart rate is extremely fast when I feel really dizzy, weak, and exhausted. It was 120 yesterday at my docs office when I was just sitting in a chair. Can someone take you to a cardiologist to get evaluated? Do you think you could even get there considering how dizzy you are? I hope you feel better soooooooon!!!!!!!!!!!!!!
Because I live in a small town it is extremely difficult to find specialists who have even heard of this disorder. I am still waiting to hear back from the cardiologist but god only knows how long it will take.....I cant believe 3 weeks ago I was up and walking then I had a really bad episode in the middle of the night where it woke me out of sleep thought I was having a heart attack and stroke and since then my balance has not returned. Saw neuro yesterday and she is not sure what is causing these episodes and is testing for an arrythmia. Has anyone ever tied this to hormone issues?? I has a hyster 3 yrs ago and since then Ive gone downhill
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