So I'm Still Tired And Having A Bunch Of Problems

[shanying418]

I guess I'll just jump into the question. I've been on Midodrine for about 2 months now. Blood pressure and heart rate seems to be quite normal, that is as long as I don't forget the doze. If I even forget one doze, my resting hr goes up to 95+ and if I forget 2 doze then it's like 120+. (I guess it's consider as mild since my hr doesn't go sky rocket, compare to everyone on this post). However, I'm still having other problems...

1. I keep having these episodes feeling like I'm not getting enough "air" in my chest --I'm not using the word "oxygen" cuz I think if they put an oxygen monitor on me, I should be fine. Is this a problem of POTS? When I phoned my cardio doc's office, the receptionist said I should call 911, which I just ignored... I know I'm not going to need ambulance.

2. Sleeping problems--- I keep feeling like I'm not really sleeping?! I can fall asleep but it's never really refreshing... I wake up at 4am 6 am and 7am--when it's time to really get up. ~ side note: I didn't realize it's a problem until this little girl who I see once a week came up to me and ask "why do you have dark circle under your eyes?" I was like.. "How do I explain this?!"

3. Stomach problems--it feels like I'm not digesting things well... is this related to POTS too? When should I mention this to my PCP?

4. Back pain--is this common? Is this POTS related? Or is this totally something else?

5. Tiredness--this is a big problem I guess. Even though I'm on medication and my blood pressure and hr seems to be under control, I'm still tired or feeling generally unwell most of the time. I thought the POTSy fatigue is caused by fast heart rate and low blood pressure. If both are under control---at least it appears so on my blood pressure monitor--why am I still tired/unwell all the time? I don't love to say this but I feel like I don't really recall a time that I am feeling full of energy? :blink:

[issie]

Shan,

Hate to say it, but --- I think all your symtoms are POTS SYNDROME related. SYNDROME meaning there alot of other things that are connected to the illness, not just the tachy and BP issues. You have to sort of address ALL the many complex issues connected to it.

You could possibly have CFS and/or sleep apenea. Both of these seem to go along with a POTS diagnosis. If you type in Breathe in the search engine, you will see that we have discussed that many of us don't do it right and do having breathing issues. So many have IBS and gastro mobility and digestive issues and if you have the possible Ehlers Danlos, it causes allot of pain --- all over and can be the reason for POTS.

Have to do a quick note, more later. Hope this helps a little. You're not alone in this, we are all trying to figure it out.

Issie

[Birdlady]

Issie is right! There are so many other things that can go along with POTS. In addition to her list of things, I'd also check your thyroid and be checked for food allergies and food sensitivities.

[shanying418]

There are so many other things that can go along with POTS. In addition to her list of things, I'd also check your thyroid and be checked for food allergies and food sensitivities.

I've been checked for thyroid problems... So far one test came back normal and the other haven't come back ... Interestingly, I had a Chinese doctor who told me that one of my thyroid is not working properly but the other is normal so my test result will not show abnormality. --don't know what to make out of this...

In terms of food allergies/sensitivities... my allergist said it's not worth it to test food allergy because my hives doesn't seem to go along with food. I think he ordered some test screening for autoimmune and liver disease but I haven't get the results back either.

But... I still don't know when should I mention all these problems to my PCP? I haven't tell her anything besides Hives/ tachycardia/ fatigue.... I don't even know if I should mention it to my PCP or my cardiologist??

Tks for answering though

[Birdlady]

A normal TSH doesn't mean your thyroid is normal, but you need to do your own research on how docs test thyroid. I don't want to get into a debate about it. Basically doctors test a pituitary hormone to see if your thyroid is working, never checking the actual thyroid hormones. It's bologna. I wouldn't assume normal is normal with the thyroid unless you've seen the results yourself. The lab ranges on hormone tests are way too inclusive.

And as for your allergist saying it's not worth testing, well I don't agree with that either but that is something you'll have to decide. The fact you have gastrointestinal symptoms is enough of a reason to test. You didn't even mention in your first post you also have hives!! I had unexplained rashes/hives that would come and go as they pleased for months. I was miserable! I could never pinpoint what the heck it was from. I had people on forums telling me it was probably a food allergy. Well I didn't get anything checked until a year later. I had a doctor specifically order an IgG allergy panel which are different than what most allergists order. It came back with a ton of food sensitivities (baker's yeast, wheat, dairy, tomatoes, eggs, blueberries, strawberries). Now that I eliminated those foods, I don't get those rashes/hives anymore. It's been over a year now. The only time I get them is if I acidentally eat one of those foods and/or if I want to experiment and see if a food is still bothering me. The rash will appear within 8-10 hours of eating the food, but can take as long as a week to show up!

The air hunger you described is a pretty classic hypothyroid symptom by the way.

[nmorgen]

I get the feeling like I can't really breathe when I am symptomatic. I'm not saying that you might not have thyroid issues, but it coud just be your POTs. I think you should probably try to get tested for food allergies. I have celiac and I have the same feeling of food not digesting whenever I am exposed to wheat. I take digestive enzymes when I start feeling this. As for the sleeping, I'm not sure which type of POTs you have, but I have hyper and I still can get horrible symptoms while sleeping. Tell your PCP, he/she is suppose to act like your manager and send you to specialists as needed.

[toddm1960]

Welcome to our dysfunctional family Shan, everyone of us can relate to each of those symptoms you listed. Now if you or your doctors feel other avenues need to be looked into by all means push forward with that. I do hope you find some things to make you feel better, and you get a reduction in your symptoms.

[shanying418]

Thanks everyone for answering! I'll try to get hold of my PCP when possible--she's on vocation. I think what I might need to do is persuade my specialists to listen to me, which was hard from my previous experiences. It feels like POTS is pretty complicated?!

@ nmorgen: My previous cardiologist said it doesn't matter which kind of POTS I have because it's hard to tell. My current cardiologist .... can't get a hold of her. She haven't respond to my phone call from last Thur. I'm hopping she'll response...