Just diagnosed. Questions.

[Christinvme]

Hello. I have had symptoms for around 10 years but was finally diagnosed a few weeks ago. I have been hydrating, increasing salt, starting light exercise. And general paying attention to what my body is telling me. I am having a few symptoms I am not sure re Dysautonomia related.

- vision disturbances; floaters, blurry vision, things looking like they are moving when they are not. I had a eye exam last year and all was well. 

- low bp at night only. When laying down 90/50. No clue why. 

- By the afternoon my hands are red, hot and a little puffy. 

I have the other normal symptoms: hr and bp problems. GI issues. Dizziness and balance. Heart palpitations. Joint pain and pins and needles. Migranes with aura. Had tilt table, echo and stress test when diagnosed.   

Looking for some advice with the "odd" symptoms. I feel better hydrating but still not great but better than I was 6 weeks ago. Any advice is appreciated. Thank you. 

[JimL]

There are many factors that can cause POTS and it could be your symptoms are consistent with one of those underlying causes. There are several autoimmune diseases that can cause POTS. What does your doctor say? As far as the tilt table, did they tell you the results? I have a lot of the same symptoms, GI, sometime palpitations, neuropathy, headaches and diplopia or double vision, high heart rate standing, but not doing much, goes back to normal if I lay down. I also get patulous eustachian tube on the left side and have joint pain in wrists and pain/fatigue in arms. Finding a doctor that gets it is key. 

 

You can check out here: http://www.dysautonomiainternational.org/page.php?ID=30

and here: http://www.dysautonomiainternational.org/page.php?ID=150

 

[Pistol]

Hello @Christinvme - welcome to this forum!!! Although I am sorry that you have to be here due to symptoms!!! - I too get the visual symptoms you describe - floaters, blurred vision and the appearance of objects moving in the corner of my visual field. I was told that this MIGHT be due to the BP changes causing less circulation to the brain. Not sure if this is what is happening with you but this was one explanation they decided on with me.

[bombsh3ll]

3 hours ago, Christinvme said:

low bp at night only. When laying down 90/50. No clue why. 

This is not necessarily abnormal unless it is a sudden change from your usual. It is part of a healthy person's circadian rhythm for the BP to drop at night for sleep, it is called dipping, and it is the "non-dippers" that are considered pathological.

My lying readings are similar and were the same prior to POTS. 

B x

[Christinvme]

Thank you all for your answers. I am waiting for my test results. I asked they be mailed to me. The dr did not tell me the results.  But I go see the dr again next week and will have my list of question. After years of being told it was anxiety I was shocked when she told me I had Dysautonomia. My mind went blank.My dad had it but sadly passed away in 2013 to an aorta hemorrhage. So I can't ask him for advice.   The clinic I go to is specifically for Dysautonomia and MVP. So I feel confident the dr will help me get to betyer health, I'm only 29!

As for the low bp. This is new. And I can tell it makes me feel really bad. 

As for the eyes I will rest in the knowledge that my last eye exam was perfect and just take it as it goes.  

[StayAtHomeMom]

I get visual disturbances as well. Kind of freaked me out at first but it has become less, especially since my lightheadness has eased quite a bit.

Make sure they check for autoimmune. Considering the joint pain and swelling. If you can manage to take a picture of your hands I would. 

Raw hard data is the best way to "prove" your symptoms. The specialists in dysautonomia are more apt to believe symptoms but other doctors like to dismiss them. 

Good luck on your next appointment. 

[gackedo]

Did your doctor evaluate you for the possibility of having Ehlers-Danlos Syndrome. It can be associated with dysautonomia-but it can also cause aortic dissections and you mentioned that is how your dad passed away.  Please look up some information about EDS and ask your doctor about it at your next visit.  Just to cover all your bases. 

I get all the eye symptoms as well as well as the red swollen fingers. That’s from venous pooling.  I can’t get my rings off anymore. Someday I’m going to have to get them cut off!

[bombsh3ll]

12 hours ago, gackedo said:

Did your doctor evaluate you for the possibility of having Ehlers-Danlos Syndrome. It can be associated with dysautonomia-but it can also cause aortic dissections and you mentioned that is how your dad passed away.  Please look up some information about EDS and ask your doctor about it at your next visit.  Just to cover all your bases. 

I have EDS too, hypermobile type. My dad also has an aortic aneurism and some other features but only me with POTS. 

Recently, I got myself scared witless about having the vascular type of EDS. Particularly as I have very high BP spikes. (note these aren't a symptom of vEDS you just really wouldn't want them with fragile blood vessels). If you get reading & find yourself worried like I did, there is a lab you can send off your saliva to for 250 USD for genetic testing to rule out the COL1A1 and COL3A1 mutations that cause vEDS. It is called INVITAE. 

I sent off a sample and thankfully tested negative which gave me great peace of mind and the turnaround was very quick. I live in the UK and sent it via fedex.

This may not be on your horizon but I would hate to think of someone else panicking like I was, not knowing where to turn when there is a reasonably accessible way to put it to bed (or if positive get appropriate management).

B xxx

[Christinvme]

On 3/18/2019 at 11:45 PM, gackedo said:

Did your doctor evaluate you for the possibility of having Ehlers-Danlos Syndrome. It can be associated with dysautonomia-but it can also cause aortic dissections and you mentioned that is how your dad passed away.  Please look up some information about EDS and ask your doctor about it at your next visit.  Just to cover all your bases. 

I get all the eye symptoms as well as well as the red swollen fingers. That’s from venous pooling.  I can’t get my rings off anymore. Someday I’m going to have to get them cut off!

Thank you, I just saw this. I will do! 

[Christinvme]

On 3/19/2019 at 12:24 PM, bombsh3ll said:

I have EDS too, hypermobile type. My dad also has an aortic aneurism and some other features but only me with POTS. 

Recently, I got myself scared witless about having the vascular type of EDS. Particularly as I have very high BP spikes. (note these aren't a symptom of vEDS you just really wouldn't want them with fragile blood vessels). If you get reading & find yourself worried like I did, there is a lab you can send off your saliva to for 250 USD for genetic testing to rule out the COL1A1 and COL3A1 mutations that cause vEDS. It is called INVITAE. 

I sent off a sample and thankfully tested negative which gave me great peace of mind and the turnaround was very quick. I live in the UK and sent it via fedex.

This may not be on your horizon but I would hate to think of someone else panicking like I was, not knowing where to turn when there is a reasonably accessible way to put it to bed (or if positive get appropriate management).

B xxx

I will look in to that, thank you!