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ORIGINAL: inmate822210

I believe you have Postural Orthostatic Tachycardia Syndrome. It's a syndrome, not a disease, which means heart failure could still be a culprit. The underlying cause is unknown in many cases. A cardiologist would be able to Dx both, but I'm not sure how your insurance works.

I also know a Neurologist who specializes in this in Buffalo, NY if you're near there, and I'm certainly willing to call her for you if you like. I cannot give a patient recommendation from online obviously; however, if I'm right--which is absurd because I've never seen you; nonetheless it fits the bill--you actually might have a low blood volume which makes it harder for your heart to pump blood through tiny vessels.

A diuretic could possibly be harming you at this point.

**And I attended UNMC for medical school to help with my own rare condition, but I never finished residency as I was already disabled.

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ORIGINAL: inmate822210

Let me state that I can't tell you something or give medical advice online obviously. It's like playing a "prison lawyer" if you will, and is based on conjecture without all of the facts. It worries me that this might cause unnecessary anxiety without conclusive evidence. My goal is simply to try and give you some questions to bring to your doctor.

Heart failure has many subtypes. Cholesterol can be good or high based purely on genetics. Some people do everything right and it's just going to be high for them. Other people, it will be low. A cardiologist or even your PCP can look into it further if you want to ask them. I'm guessing on this, and it's unwise of me to even do so. Don't worry about what I say; your doctors will take care of you.

Bleeding issues aren't exactly liken to being a super-plump orange. You don't bleed because you have too much or too little blood; you bleed because it doesn't clot properly. That they've checked aPTT means that they're aware of it and doing what they believe is medically appropriate for you. That I wouldn't worry too much about.

What I did hear you say is that there is a jump from 110-180. POTS requires a jump of 30 BPM from supine to standing. On your word, you're well over that. Many doctors aren't even aware of that syndrome, but it has many potential other affects and is considered dysautonomia. One of the primary symptoms is exercise intolerance, which many people don't understand. It could also be happening from deconditioning, so a doctor would have to look into it.

These are just ideas. I wouldn't worry, but I would see a new PCP. That combination of drugs should stop a freight train of blood pressure. And two vasodilators would make you bleed more.

What's important is to find doctors who listen to you and that you trust. I know NY is much more highly populated than where I live, but you need to advocate for yourself with some research and specific concerns. Most doctors will ignore something if they are presented with a constellation of symptoms because usually they don't add up, and testing for every little thing is expensive and will get them in trouble with insurance companies. It sucks, but it's the way it is.

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ORIGINAL: dollparts85

I won't go to the ER unless I'm at risk of dying. I saw my PCP yesterday and the pain is making my blood pressure dangerously high so she put me on HCTZ (a strong diuretic)

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ORIGINAL: mummyman321

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ORIGINAL: dollparts85

I won't go to the ER unless I'm at risk of dying. I saw my PCP yesterday and the pain is making my blood pressure dangerously high so she put me on HCTZ (a strong diuretic)

The best advice I can give you is to go back to your doctor and talk to him. It appears you have more going on and we do not have all the information.

A couple of things to comment on.
Dangerously high blood pressure is not caused by pain. Being overweight, high cholesterol, hardened arteries, fluid retention etc cause high blood pressure. The fact the doctor is prescribing a diuretic would indicate fluid retention. Having high blood pressure can limits what pain medication they can give you though.

I do not know of a doctor who would not prescribe pain medication after having a surgery unless their were underlying medical issues. And I have never heard a doctor say they will not prescribe pain medication until you have and EMG or other type of test. Unless it interferes with the test. In which case they would tell you to quit taking the medication X hours before the test.

You have more going on that anyone here can really help you with. Your doctor is your best bet to get answers.

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ORIGINAL: kalikshama

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I don't know your whole story, but speaking from some experience with back surgery, you have to maintain some form of activity, even if it hurts like a mofo, which it does, because if you lie around a lot, which is pretty much what you want to do when you feel like that, lol, the muscles spasm and get stiff and sore and you do feel worse than before the surgery.

My surgeon told me walking was my best exercise, and he was right. It's really hard, and exhausting, but even if you make it down the block and back and build up from there, it's beneficial.

I've had back pain off and on for decades. Yes, Tramadol helps (like a band-aid), but what helps the most is regular yoga, walking, and maintaining a healthy weight.

OP - there's your natural/OTC method - regular yoga, walking, and maintaining a healthy weight.

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ORIGINAL: LafayetteLady

I certainly can't comment on your condition. I don't know what type of back surgery you had. I do know that surgery for disk fusion doesn't have odds I'm willing to take. While a very small sample, the people I know who have had it, two were worse off than before the surgery, two had no change and one felt better. That's not good enough for me to let someone operate on my spine.

I also know that if a doctor tells me that they don't know what is causing a problem, they need to do further tests or refer me to someone who can figgure it out. It is NOT normal to frequently get dizzy, fall down or pass out without reason.

Finding good doctors can be difficult. I don't know about your insurance, but I would look for a different PCP and pain management doctor in my plan. I would also find someone who could perform the tests in a more timely manner. My insurance actually has guidelines how how quickly the providers need to schedule appointments and unless it routine, the longest is 30 days. Call your insurance company and find out what can be done to get you an appointment sooner.

No one should be made to suffer for months while they make a million phone calls trying to find someone to do what is needed, but sadly it happens all the time.

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ORIGINAL: LafayetteLady

And I assume you have contacted the attorneys handling that suit, which I also assume is class action?

I know how it can suck having few options for certain things with insurance. What about changing primaries? Many primaries will handle interim pain management things while you wait for your appointment.

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ORIGINAL: NiteWing2000

Go to your doctor.

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ORIGINAL: LafayetteLady

So..what is the doctor's response? Certainy, he isn't going to just say, "wow, your BP is really high. See ya next month."

Several people here have suggested you question your doctor further. I suggested switching, to which you responded that your insurance company required a 30 wait fro previous visit. Obviously you have chosen to stick with the same doctor.

By the way, many doctors would hospitalize you for super high. What was the actual reading?

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ORIGINAL: mummyman321
...
So this storyline is not adding up.