Pupil Issues & Heart Pain Question?

[Sassyred]

I am new, this is my first post. My friend suggested this board to me. She told me about POTS as she knew I has the same issues as her. That was almost 2 years now? She never experienced these two issues and so I will ask if anyone had them that is on this board.

When I was a teen going to school, I use to have episodes of lightheadedness and always thought it was low blood sugar. Then one day ate this great big breakfast, stood up from the couch and everything went black, I held on to the couch. I never knew what it was until my friend told me POTS!

It's obvious that I have had POTS since at least my teens. The issue I had way in my 20's (I'm 54 now) was unbeknown to me my pupils would dilate our of the blue. It happened once in front of my mom's friend who was a nurse, she asked my mom if I was on drugs. Then it happened at an eye doctor appt and they said I didn't need drops to dilate my eyes! Never knew what that way until my friend said POTS and I read UP! I use to have episodes the past years where I felt cross eyed & bad nausea driving or throughout my day. *Has anyone had this issue here?

The other issue my friend never had, was when I was teen, can't remember how many years it went on for, but I use to have this pain n my heart when I would breathe. It thankfully happened for seconds to minutes but it happened out of the blue and felt like a needle would go in my heart when I breathed. I am not a doctor person (such fears of pain, needles, proceedures, tests) I won't go unless I have too and "I" can't treat me with homeopathics. When this pain would occur it hurt badly and scared me. At some point it just stopped. NOW I am thinking this had to do with POTS? Maybe some growing spell issue. *Has anyone experienced this issue which I have not read anywhere, yet?

Another question: I always assumed I had terrible motion sickness since I was a kid, I could not even do elevators as a kid w/o nausea. I use to take Bonine to fly, until one 45 flight to Vegas I was sooo sick throwing up the whole way there and back, I swear I would never fly again. As I crawled off the plane that trip, some guy followed me and said he use to be like me and wears the patch to fly. The bad thing is IF that sick, it takes me 7 days to feel normal again. NOW, how much of this is POTS and not motion sickness, or is there no way to ever measure it. I hoped and thought I would outgrow it. But I did a late night work gig with the boss a few times and the car rides made me so sick I wanted to die of nausea.

I'm glad to find this board. I am GF and DF, eat organic and healthier than ever and I still have bad days I tend to forget it is the POTS and wonder what is wrong with me! It has been so very frustrating as you all know here. Mostly my issues now are migraines/nausea. This can be bad if my body won't digest food that day! (feel hungry ALL day even if I eat frequently- my friend has this) I can take off and put my sweater all day long within 5-10 min intervals due to body temp. I thought it was hormonal, lack of HRT. (wont take due to breast cancer) I need to sleep on two pillows the past couple of years.

It's great to find "others" with this just because for so long you can't understand, even when you "think" you are doing everything correctly, you can feel sooo sick. I joke all the time I have blood like a snake, NO warmth (until the sweat happens) but usually cold hands/hand.

[MomtoGiuliana]

Welcome to the forum sassyred.

The symptoms that you describe are all mentioned in some fashion in this list of symptoms reported by POTS patients:

http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms

Of course some of these symptoms are more bothersome (or severe) than others for patients. There are many possible treatments--medications and other--that may help.

[Sassyred]

Thank you for the link.

[corina]

Welcome sassyred, hope you'll find answers to your questions here!

[m@t]

It's obvious that I have had POTS since at least my teens. The issue I had way in my 20's (I'm 54 now) was unbeknown to me my pupils would dilate our of the blue. It happened once in front of my mom's friend who was a nurse, she asked my mom if I was on drugs. Then it happened at an eye doctor appt and they said I didn't need drops to dilate my eyes! Never knew what that way until my friend said POTS and I read UP! I use to have episodes the past years where I felt cross eyed & bad nausea driving or throughout my day. *Has anyone had this issue here?

I joke all the time I have blood like a snake, NO warmth (until the sweat happens) but usually cold hands/hand.

I have the pupil issues and also the cold hands and feet. It all makes sense really, our autonomic system is broken and it is the thing that controls all these things.

A cardiologist said I was a bit like an old Lamborghini, I've got all the equipment to be a fantastic sports machine but the wiring is shot which makes it behave in a less than ideal way. Sometimes it works well and you feel great / normal other times all of the connections are shot and you have to lye in bed )

[Sassyred]

Does anyone know if anyone goes out on "disability" due to POTS? I thought about this, it may just be too much as I get older. I am very blessed to be working at home these last few years. I work til I can't stand and need to lay down on bad days. But I remember the bad days at work. I would expect POTS to get worse as i age, because I have not outgrown it yet.

[Katybug]

I've been on SSA Disability since 2011.

[Guest ANCY]

I've been on SSI for 3.5 years for my dysautonomia, Although I did not have an official diagnosis when I was declared disabled and awarded SSI. Sadly I had not worked enough hours to qualify for SSDI, was only 21 when I applied.

[statesof]

Hey Sassyred, I've had some similiar eye issues as you, but always attributed them to some sort of weird migraine state; sometimes I will feel as though my eyes are going to cross but they never do, it's like the eye muscles feel strained on their left and right sides, and sometimes just get a simialir strained eye pain but it almost always makes my vision feel a bit "off". Also for me, I don't fly anymore, but it would take me a few days to feel "normal" again after flying, within a minute or two of getting off a plane I would feel sort of out of it/ brainfogged, and visually things would look weird like people looked like they were photoshopped on to the background (if you've ever seen that type of effect in pictures), but I also have depersonalization disorder so I thing some of the visual part is more related to that. My doctors thought maybe the flying in a pressurized cabin was messing with my migraines, though this was before they were aware of my POTS.

[Sassyred]

Ancy - How can SSI without an official declaration from a doctor? I assume your primary declared you to be out on DI?

statesof - Cross-eyed issue - I know that I am not, it feels that way and causes nausea when I can't focus. I get nausea not just from inner ear but eye motion too.You do sound like me, as it takes you days to feel "normal" again when you fly.I first fly when I was 9, never expected any issues, but had bad inner ear pain. Then when I flew after that the motion sickness started. Like I mentioned, the Bonine helped for many years, so shocked when it stopped working! I'm lucky that I really don't care about traveling. (that said most people love it, so it would great to be able to) It seems to me that it could be motion sickness w/POTS. Regardless, car, bus, boat, plane, ugh. Even if I sit still and the screen has too much motion or that roller coaster thing they show at the beginning of movies sometimes, I close my eyes!

Again, nice to found this board. I thank you for sharing. It is all in a effort for all of us to feel somewhat normal!

So now it is just finding someone who has those wierd "needle" pains in the heart when they breathed, when they were a teen.

[Rose11]

I have the dialated pupils all the time. Just saw an ophthalmologist and right away he said it was probably due to an autonomic disorder. He also said I have dry eye, so he gave me eye drops. It helped just very slightly with the dialated pupils

[Guest ANCY]

I was declared disabled by the dr who was my primary at the time. Just to clarify I am not on SS DISABILITY because I had not worked enough hours prior to becoming ill, I'm on SSI. I know that it is much harder to get on disability.

We started applying for SSI per the recommendationof a case manager who was working with us to co currently be declared my Dad's adult disabled dependant through the air force. That went through faster than the SSI and am not sure what effect that had o their determination, we submitted it with the rest of the paperwork. Other than that I think it was the sheer state of my existence at the time. I could not do much of anything for myself and was dependant on my family to help me preform tasks of daily living. I also was on TPN via PICC line and attempting enteral feedings through a JTube. Compared to many others I think my determination was rather quick, I think it was around 6 months, at least under a year.