nothing is helping—feeling frustrated

[sheal]

hi. i was diagnosed with pots in january of this year. i am so frustrated because nothing is helping and i am a senior in high school and am missing so much school. i feel so exhausted, nauseaous, and dizzy that i physically cannot make it to school. i was using a scopolamine patch and that was working but was making my skin infected due to an allergy to the adhesive. i had to stop using it and now i’m back to square one. my cardiologist reccomended i go gluten free so i started that yesterday. also per my cardiologists recommendation i’ve been taking 2 saltstick vitassiums three times a day. i’ve also been trying to drink more but drinking water seems to make me feel more sick. yesterday i felt so bad my cardiologist had me go to the er and get saline and zofran and even that didn’t help. i just want to have my life back and to enjoy my senior year. i’m so frustrated because nothing is helping and i just want to be able to get back to school. 

[Pistol]

I know that drinking water can make you sick to your stomach and so can salt supplements. I solved that problem by eating salty things such as marinated olives, pretzels, pickles (however the vinegar in those may give you problems) - drinking ginger ale has helped me maintain my fluids ( but increases sugar intake and is not for every one). IV fluids sound like something that might help you in the long run, it is that way for many of us. Maybe your cardiologist might consider weekly infusions for a while until you improve enough to maintain balance with hydration, salt and mild exercise? This regimen has helped many of us get back on our feet when we are acutely ill with POTS symptoms.  

[Bluebonnet08]

I'm so sorry that you are dealing with this at such a young age    Have you tried doing Saline IVs regularly?  They helped me over time.  B-12 shots also helped.

Are you on the birth control pill?  That seemed to make my POTS so much worse.  

Have they tested your ferritin and Vitamin D?  I am finding that low ferritin can contribute to palpitations and low Vitamin D can contribute to fatigue, so it will definitely help to have those in a normal range.  

I have a FitBit that helps me to monitor to my heart rate so I don't push too hard and sit down to rest when it gets to elevated.  Is your blood pressure low?  If so, you can add salt(usually 2tsps a day) to the water you are drinking.  You would need to ask your doctor, but at one point I was told by my doctor to do leg strengthening exercises, like pool jogging to help improve blood flow to the legs.  

Have you been to an autonomic center?  Some try to find "root cause" of POTS.  I've had potential causes looked at, like neuropathy, Ehlers-Danlos, and autoimmune conditions, but so far I haven't found root cause.   Sometimes it can help to treat the condition if you find your root cause.

Again, I am really sorry you are dealing with this.  It's a difficult condition, but some people do improve their levels of functioning once they find the right treatment.

[sheal]

4 hours ago, Pistol said:

I know that drinking water can make you sick to your stomach and so can salt supplements. I solved that problem by eating salty things such as marinated olives, pretzels, pickles (however the vinegar in those may give you problems) - drinking ginger ale has helped me maintain my fluids ( but increases sugar intake and is not for every one). IV fluids sound like something that might help you in the long run, it is that way for many of us. Maybe your cardiologist might consider weekly infusions for a while until you improve enough to maintain balance with hydration, salt and mild exercise? This regimen has helped many of us get back on our feet when we are acutely ill with POTS symptoms.  

i have an appointment next week with my cardiologist, i’ll have to ask her. thank you 

[sheal]

21 minutes ago, Bluebonnet08 said:

I'm so sorry that you are dealing with this at such a young age    Have you tried doing Saline IVs regularly?  They helped me over time.  B-12 shots also helped.

Are you on the birth control pill?  That seemed to make my POTS so much worse.  

Have they tested your ferritin and Vitamin D?  I am finding that low ferritin can contribute to palpitations and low Vitamin D can contribute to fatigue, so it will definitely help to have those in a normal range.  

I have a FitBit that helps me to monitor to my heart rate so I don't push too hard and sit down to rest when it gets to elevated.  Is your blood pressure low?  If so, you can add salt(usually 2tsps a day) to the water you are drinking.  You would need to ask your doctor, but at one point I was told by my doctor to do leg strengthening exercises, like pool jogging to help improve blood flow to the legs.  

Have you been to an autonomic center?  Some try to find "root cause" of POTS.  I've had potential causes looked at, like neuropathy, Ehlers-Danlos, and autoimmune conditions, but so far I haven't found root cause.   Sometimes it can help to treat the condition if you find your root cause.

Again, I am really sorry you are dealing with this.  It's a difficult condition, but some people do improve their levels of functioning once they find the right treatment.

hi. i don’t think my ferritin was ever tested. i’ll have to ask my dr. also thank you i’ll have to look into going to an autonomic center sounds like it may help if i find the root cause. thanks again

[DizzyGirls]

If the scopolamine was helping, you might try meclizine as an alternative.  I get mine on E-bay, so much cheaper.