StayAtHomeMom

How do you know you have vein damage?

I think a clinic setting wouldn't be too bad, but you also need someone "local" to help manage you after your diagnosis too. My "local" specialist is 3 hours away so my PCP helps as well. I have plans to go to a clinic setting soon to try to find an underlying cause after my oldest son gets checked for POTS. I am thinking there is a Mayo clinic in Arizona. So maybe go on that waiting list and still look locally while you wait.

My doc started me at up to 5mg 3X a day. He said I could pick and chose (it is very nice). My Beta Blocker lowers my BP a bit and the midodrine seems to counteract it prefect. I usually take 5mg once a day sometime twice. But he had me start of slow by cutting the pill. I have been on it about a year. My tingling usually only last about an hour max about 3 hours into my dose. I figured by now it would stop tingling but I guess I am just lucky that way. My doctor doesn't seem concerned. He told me that's good, it means it is working. Overall it ups my BP by about 10 points both systolic and diastolic.

In my research of EDS (I suspect I have it) I have seen where dysautonomia is a criteria point. Unless it has changed in the last few months.

I use dramimine. The motion sickness meds. Half an over the counter pill and it helps my dizzy spells. Thankfully it has been a while since I have had to take it.

The only thing similar I get is I have some seriously poor circulation. Just crossing my legs can make them fall asleep. I wake up with my hands asleep. There are times I will lay on my left side and my right hand will fall asleep or vice versa. It has been progressively getting worse since before my POTS reared its head 3 years ago. Had a nerve conduction study done and it isn't my nerves. Doctors seem to just dismiss it.

I take midodrine. The tingly scalp is my side effect too. It really is kind of freaky when you first take it. How much are you taking and how long the the tingles last?

You said coffee doesn't up your BP, have you tried caffeine from soda? It turns out that was contributing to my hubby's high BP.

I did a urine catacholmine test and I was off my meds due to my TTT. I am not sure if the meds would mess with my numbers so I played it safe and didn't take them since I was off of them anyway. Just make sure you try to have a normal day as much as possible. If you don't do any standing while during the urine catch I figure that it would skew the results. I would speak to the doctor or the lab and see what they say.

Another option while you are waiting could be to bring the possible tests to be run to your regular doctor and see if they are willing to run them.

I meditate. I have always been able to drop my HR by at least 10 points just by doing that. When I first got sick that was my go to. Even now I have gotten to the point that I mediate almost all the time to a point. Finding my answers has also helped alleviate my fear some. I would talk to your doctor and see if there is a medication you could try that would help your fears, or even see a therapist to help walk you through trying to not be so fearful. There are also natural supplements that work as an anti-anxiety that may help. And the natural supplements may react better for your body.

I use Rolaids with gas relief chewable to help with heartburn. For me heartburn is the acid in the back of my throat. It gives good relief and my body seems to settle down as well. Not sure if it is the extra magnesium in or what. I have noise sensitivity so I understand that. I am now much more jumpy and my HR freaks out for a bit. I used to love loud music, now I can't listen to it very loud, and too much bass freaks my HR out too. A lot of what I do is just go with it, wait for my body to relax (sometimes requires laying down, but mostly I can meditate), and don't stress it too much. As your body stabilizes it will have a new normal for you. If you get new symptoms be sure to tell your doctor, but mostly the new symptoms will cycle and won't bother you for a while. Hope you feel better soon. I am sure you are relieved that heart symptoms are easing with the meds.

I would say it would be worth it. When I was collecting data to show my doctor I only averaged a jump of 25, but on my TTT it showed over 130 for the full 45 minutes. My average laying down was 80 at the time. Even if the cardiologist says you don't have POTS (after doing the correct testing) then you have an answer. Either way it is an answer to finding out what is wrong.

I have noise sensitivity that causes what you describe, I avoid the noise as much as I can. Only other thing I can suggest.

A poor man's tilt table is where you take a blood pressure machine and take you BP and HR laying down then slowly stand up and take it again right away, after 5 minutes, and after 10 minutes. Classic sign of POTS is little change in BP but HR change of 30+ or higher than 120. I never thought I was hyperflexible until a chiropractor mentioned it about my youngest son. Turns out both my boys got it from me I suspect EDS because of it but I am trying to get my underlying diagnosised and hoping it isn't that.

I know that feeling of "normal" things not actually normal. I am finding more and more things these past few years. Try a Poor Man's Tilt Table Test at home. Record your data and bring it in. I had to do mine every day for a month to show my doctor and finally was on my way to my POTS diagnosis. It took a year and a half of being sick for me to find the reason. Then about 2 months after my poor man's data to get diagnosed. Have you ever noticed you are more flexible? Such as being able to touch hands behind your back when you put one arm over the shoulder and one from your hip? Sorry it is a poor explanation but that is the only way I can describe it.

You said you have POTS, have they tested you for HyperPOTS or other dysautonomias?

Not sure about the catacholmine test needing surges everyday. BBs and ANA shouldn't be an issue. I take BB and I have yet to test positive for ANA. I suspect I have autoimmune but I can't prove it. Yes autoimmune can cause POTS as well as a host of other things. Autonomic testing is at minimum a Tilt Table Test, blood work, and urine catacholmine. Doctor can do more testing such as an echocardiogram to check heart structure, MRI, and nerve conduction studies to check the nerves in your body. I am not sure about your neurologist question. My neurologist is my POTS specialist. And the only one I have seen. He sees all things though. Feels weird waiting in his waiting room though because I am one of the few younger people there. Most of his patients seem to be older.

Her doctor told her it was the worse case he had seen in someone who was not diabetic. She also has celiac so eating difficult for her. Glad to see you are feeling better.

How much fluids are you intaking? I add lots of salt to my foods but that's it. Water is a big thing for me though. If I don't have enough my body gets upset. Hopefully this is just a symptom that will cycle quickly.

I would suggest finding a neurologist. Maybe all of it stems from your nervous system? It sounds like you have a lot on your plate and I am sorry. Cleveland Clinic may be close enough to you that you may try seeing them. Sorry I couldn't offer more advise.

I love the Dr. House comment. I have said the same to my hubby I am sorry you are losing your cat. I think cats are the perfect companion for our condition because they are independent but they also help us feel better. It is possible it was a one time thing just from eating so much, but I would still see if your doc could give you a referral for a GI specialist. I didn't know medicines could cause gastroparesis. That may have been the issue with my sister in law considering she wasn't diabetic when she developed it. They have diagnosised her diabetic now but it isn't really. It is like her blood sugar levels are backwards. She is high during the night but bottoms out during the day.

I see a neurologist who is a POTS specialist in Bowling Green, Kentucky.

It sounds like possible gastroparesis from what my sister in law has told me. They have to do the egg test first to confirm though. Diabetes can cause gastroparesis. That being said there are times I wonder if POTS can give you the same symptoms on a cycle. Like the nervous system just stop working around your stomach and intestines. Good luck with the soup and I hope you feel better soon.

What is your HR during laying and standing? That is the sign doctors look for.