JimL

I felt like that just talking to his scheduler/assistant. She seemed to know what I was talking about and understood that we/I get the crazy looks. I was apologizing for rambling, but she said that's fine, she understood why.

It's getting that way in the US. Insurance companies have waiting periods for MRI's and CTs. My spinal chord was funny compressed at L4-5 and BCBS had a 2 week waiting period for surgery approval. When money comes first, we lose.

I am old school. Before moving to AZ, I never had to wait that long for appointments. In the last 7 years things have changed. Practices are more corporate and they patient to doctor ratios are very high now. In spite of eschewing single payer, americans are drifting towards that kind of wait times and whatnot. 6 months is nuts, but what can you do? After doing the specialist shuffle for the past 7-8 months, I've had enough.

Yeah, at 23, your max HR is 197 I think. Still, 157 is too high for what you are doing. Vyvanse can affect blood pressure and the heart too, but that might not be it. Your B12 is on the lower side of normal, but still in the normal range.

I found Someone that Knows POTS through this website. Dr Todd Levine in Phoenix. I called to setup an appointment and left a VM and they called me back. The person setting the appointment seemed to understand what I am going though and almost instinctively knew the runaround that I have gotten. She said I should have been referred to Dr Levine or a neurologist a while ago. Unfortunately, the closest appointment is May 21st. They put me on a list for cancellations, so we'll see. I am hopeful, for now.

A couple questions: How old are you? If you're young, maybe 157 beats isn't so much to totally stress you. As far as the ANA goes, could be autoimmune, could be medication. What meds are you on? If you go the DINET website, there are at least a dozen different causes for POTS. A good internist that knows your history will be able to figure out what next.

One of the possible underlying causes of POTS is thick blood or APS, I think it's called. Do you eat food higher in iron?

I know this sounds crazy, but I saw it on a cooking show. Ketchup on meatloaf and then put brown gravy over that and cook. I tried it and it was pretty good. Another good meal is making gyro meat and tziziki. I mix lamb and beef.

I could get on board with this.

Alcohol is a no no with POTS, at least that's what I've read. Does other food affect you? I know mast cell activation disorders can cause POTS and food factors in big time.

In the past, my CBC's and CMP is always within normal ranges. It's why they doctors I see don't know what to think.

Have you had MRI of your spine and brain? I have a very bad back, cervical fusion in 2012, C4-6, having c2-4 done in a couple weeks and L4-5 done last year. I know chiari malformation can cause POTS and a CSF leak can mimic it too, but when you say you drop things, I had that before I had the C4-6 fusion. I still have neuropathy in my lower legs from the L4-5 fusion, but the drop foot improved a lot. I still have bad areas of my back though. L2-4 are bad and T1-2 has some disk herniation. Something to think about. Funny thing is, I lost a lot of weight over a year and half, 170lbs. Went from 382 to 211-212. I am 6'5, but the toll the excess weight on my body is something I cannot escape. I don't know why I got POTS, all this started with GI problems late last may and POTS hit around christmas. The only thing I can think of is a poorly treated H Pylori infection when I initially had GI symptoms.

I can't afford that either. I'd like to have it. I just use an app on my phone to do pulse rate and I have a digital thermomerer and Omron BP device. It's old, but it works. My CPAP has cellular so I get data from that too.

that is wild. Totally unexpected from a common sense POV.

45 minutes seems like a long time to be up. I find that more the 30 minutes gets me in a place where I have to lie down. Even sitting for a long time will bring it on quicker. I had a therapist appointment yesterday and I was sitting for an hour and there in the car there and when I got up to leave, I was like, whoa. Dizzy, brain fog, unsteady. I take metoprolol for HBP, at night. That usually calms my heart down. The other thing is the unpredictability. I was having a good couple days before yesterday and then boom and my GI symptoms are going full blast too.

I'd like to get an Apple watch. The new ones do EKG.

I've had some of that, but my bottom numbers don't elevate. Usually the systolic is 65-75. Top numbers are rarely above 130, usually 110-120 when I awake. I've had the cognitive issues and cold feet, I've had some shaking/tremors, but rarely. A lot of GI issues, bloating, gas, nausea, pain, headaches. I am going to try to setup an appointment with a neurologist I found on this website. He's local and has dealt with POTS, obviously. I hope I get in and not get dismissed as has been the case.

That's great!

It always does. Once it gets much above 105, it sucks. The humidity is low, so 90-95 is ok here. Not like FL at all, easy to deal with, but at a certain point it doesn't matter anymore. I used to go hiking 4:30 in the morning during those 110+ days as it would be 93 and dark out. Once the sun comes up, it's torture.

Never used to be cold before this. Maybe it's the weight loss too, but I laughed at the locals when they'd put a parka on when it was 32 out. I used to go outside in shorts at that temp. Now I feel cold. The heat hasn't hit yet, but I am not looking forward to possibly finding out I can't take that either, although I used to handle cold much better than heat. I've seen 123 here.

Mine seems to be the opposite. It gets worse as the day goes on.

What is ORS?

I'll have to look through the resources of DI to see who's local.

I can go out of network, but it will cost me 50%. When the EP called it like a migraine, I asked, what if I can't deal with working and he said, some people can't. He wasn't cold and impersonal, in fact he was almost hypno-suggestive, not really patronizing, by trying to be compassionate. I just get paranoid that there's something in my chart that says nut job and I'm getting passed around in the hope I give up. I know that sounds paranoid, but maybe it's just as simple as you all say. They know what they don't know and don't want to know.

I could go to Mayo, but after going there for a neuro ophthalmologist, I wasn't impressed. No root cause analysis for my diplopia. Never had eye problems in my life. She was like, you hve 4th cranial nerve palsy and probably have for awhile, but you've decompensated. That was it. Sends the report to my regular eye doctor who tells me I can get prism glasses. Like I said, other than age related far sightedness, I've had good eyesight. I am starting to wonder why I have doctors that don't seem to give a crap. I don't really have the means to go out of state and I don't have any sick time or vacation left and I work for the state. We acrue sick at half the rate of vacation. AZ is a cheap a$$ state to work for.