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dizzyape

Vandy appt next week - Do you have these symptoms?

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Today I have had a visual migraine, headache, dizziness and extreme fatigue. Now starting to have some of my gastroparesis symptoms. So needless to say, it's been a rough day.

I have had so many symptoms off and on for years and after being told "it's just anxiety"  I finally got a little clarity. A new doctor finally put a name to all of these crazy symptoms and said he's almost certain this is what I have.  My concern is what if it's not a benign form of Dysautonomia where I can just deal with symptoms as they come, what if it's something worse?

Does anyone have this many symptoms?  - fatigue, gastroparesis, headaches, dizziness, vertigo, chills, ringing in my ears, tachycardia, feeling like I'm in a dreamlike state, feel like I'm walking on a slant.....

I keep reading POTS symptoms and there don't seem to be this many. I'm hoping it is not a worse form of Dys or something else.  Just looking for your experiences. 

 

Thank you!

 

 

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Yes. And more. Don't worry. I went to Vandy and they helped me.  They might not get it all the first time because it encompasses so much and symptoms keep evolving, but don't give up. Even when they put a correct name to it, you won't walk out with a script and have your life back. This is going to be a lifelong process, most likely. If you just had POTS symptoms, in my opinion, you would have a better chance of it passing. I hope I'm wrong.

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Yep. 

Unfortunately, the fun thing about the autonomic nervous system is that it regulates A LOT of body functions. So when it malfunctions, you get a lot of diverse symptoms. POTS is characterized by the standard symptom of tachycardia when standing, but it's symptoms can expand to so much more. I'm still developing new symptoms and I've been experiencing POTS for more than 10 years now. 

For me, my main symptoms are dizziness, brain fog, fatigue, shortness of breath, frequent hypothermia, digestive issues, joint pain, and migraines. But sometimes my body gets creative. I'm sure if I made a list of all the weird things dysautonomia does to my body it would be incredibly long. 

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I have a lot of those symptoms too. It's funny, usually when reading a description about pots, they mainly focus on the tachycardia part and skip over the rest. I always tell people pots is so much more, if it were just the heart rate, the beta blocker keeps it in check, so that's the least of my worries. Dizziness when upright is my worse symptom, but I get all of the others you mentioned too. I never had migraines before I got sick, now I have visual ones, and regular ones too if I eat certain foods. 

I went to Vandy several years ago and had a great experience. They really are experts in this area so they are very thorough. The autonomic clinic website has a list of different conditions that you can click on. It gives a description of the condition, symptoms, treatments etc. I read through it before my appointment and felt better because I could rule out some of the more serious ones based on my symptoms. 

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18 hours ago, dizzyape said:

Today I have had a visual migraine, headache, dizziness and extreme fatigue. Now starting to have some of my gastroparesis symptoms. So needless to say, it's been a rough day.

I have had so many symptoms off and on for years and after being told "it's just anxiety"  I finally got a little clarity. A new doctor finally put a name to all of these crazy symptoms and said he's almost certain this is what I have.  My concern is what if it's not a benign form of Dysautonomia where I can just deal with symptoms as they come, what if it's something worse?

Does anyone have this many symptoms?  - fatigue, gastroparesis, headaches, dizziness, vertigo, chills, ringing in my ears, tachycardia, feeling like I'm in a dreamlike state, feel like I'm walking on a slant.....

I keep reading POTS symptoms and there don't seem to be this many. I'm hoping it is not a worse form of Dys or something else.  Just looking for your experiences. 

 

Thank you!

 

 

Have you had autoimmune blood work done yet ?

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My list of symptoms is long as well. You are the first person that mentioned, "feel like you're walking on a slant."  This was an odd and early symptom for me. It did resolve in time with no specific treatment. I still deal with plenty but that seemed to fade away. Let us know what you learn from your visit. It is always so interesting to learn and compare. Good Luck!

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Yes, I have almost all those symptoms and a long list of others as well.  I went to Vanderbilt a little over a year ago.  The dysautonomia specialist and neurologist were fantastic.  The neurologist performed a lot of blood work.  I’m go glad I went and my life has really improved since (but it has been a struggle and a lot of rollercoaster ups and downs).  I will never feel normal but I can do so much more now and feel less uncomfortable (specifically, they really helped with stopping the adrenaline rushes).  I wish you luck with your appointment and I hope that you have a good outcome!

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Yes and it came back negative although my dr did want me to follow up with a Rheumatologist to rule out anything. I'm calling on Monday to pursue that .

 

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It's extremely common to have a ton of different symptoms affecting the whole body.  You have had this on and off for so many years and dealt with it.  It should be no worse than before. In fact, you will probably improve with treatment.   

Edited by yogini

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I had the walking on a slant (I call it rowboat) and also feeling foggy all the time.  These symptoms mostly went away and happen very occasionally for me now.

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Quick question: I find myself getting these awful dizzy spells and when I take my blood pressure it's normal. Do any of you get dizziness and have a normal bp? I thought the dizziness comes from a drop in bp.

Thanks!

 

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Did you check your HR when feeling dizzy?  But in any case, it's not unusual to feel dizzy when your HR and BP are normal.  

BP is measured in your arm.  Many people with POTS feel dizzy because not enough blood gets to the brain.  It collects in our lower body because our blood vessels do not constrict enough.  There are other mechanisms but this is a big one for many of us

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