Finally legitimately diagnosed with POTS! but as my horrible luck would absolutely have it

[Gingergrrl]

@Tired of being sick Please forgive me if you already explained this, but can you take a beta blocker for the tachycardia portion? In 2013, I had episodes where my HR went into the 170's but once I started the beta blocker, this never happened again.

 

[Sea]

What led to you having an ultrasound of your femoral artery @Tired of being sick? Sorry to hear your results are being ignored.

As to your MRI, most doctors have no idea what to do with abnormal results unless it fits a known pattern of disease, like MS.

I hope that Dr Jaeger can help you, it sounds like he is a good doctor to see.

 

[Tired of being sick]

@Gingergrrl

No, beta blockers lower blood pressure.

However I managed to get my PCP to prescribe me Metoprolol before I was "legally" diagnosed with POTS,

I handed her a list of 4 medications that I wanted to try.
My
1st choice was:
Florinef of course
2nd
Atenolol,
3rd
metoprolol ,"do not no why she picked this over my 1st choice"
4th
propanolol

It made my blood pressure more bipolar and heart rate extremes on initial stand up even a larger gap(for instance: my bpm seated was 83bpm. Then upon initial stand my bpm spiked to 116bpm, creating the 33bpm gap).Also the metoprolol made my pain and stiffness rise from my poorly managed normal 7 on pain scale of 1-10 to a 9!

You can see my complete failure thread here that you posted in
Treating my POTS naturally and with Pharmaceuticals
Here is another thread that you did not post in that may be of interest to you
The Importance of Orthostatic Intolerance in the Chronic Fatigue Syndrome

 

[Tired of being sick]

What led to you having an ultrasound of your femoral artery @Tired of being sick? Sorry to hear your results are being ignored.

As to your MRI, most doctors have no idea what to do with abnormal results unless it fits a known pattern of disease, like MS.

I hope that Dr Jaeger can help you, it sounds like he is a good doctor to see.

Thank you very much for your reply
It somehow made me feel better about my brain condition..

As for the ultrasound My back was broken and the ER team did not find it during my stay
I went to the ER by ambulance (could not stand up on my own because of severe low back right buttock pain that radiated down my leg to knee cap.(thought the pressur was going to blow my kneecap off..

Dr' then ordered ultrasound to check for blood clot or clots..

 

[Sea]

Thank you very much for your reply
It somehow made me feel better about my brain condition..

As for the ultrasound My back was broken and the ER team did not find it during my stay
I went to the ER by ambulance (could not stand up on my own because of severe low back right buttock pain that radiated down my leg to knee cap.(thought the pressur was going to blow my kneecap off..

Dr' then ordered ultrasound to check for blood clot or clots..

Sad to hear, but unfortunately very common, that a doctor is only interested in a result that they are looking for and nothing else that a test might show up. No clot? You're good to go!

 

[Tired of being sick]

Good to go?

The only time I will be good to go is when ALL my arteries,veins and vessels of my limbs,and brain receive 66%-100% blood flow..Otherwise as of now they are dying a very slow torturous death..

"where there's blood there is life"

 

[Tired of being sick]

I like @Inester7's recommendation.

If it were me and the doctor raises concerns about the possible side effect. You could offer to wear a cardiac harness while taking the first couple of doses.

ETA: btw Did you NOTICE that your POTS seemed to happen at laying down as well?

I had really bad OI (undiagnosed, but pretty undeniable from my symptoms at the time) a few years back. Still have occasional, mild experiences of it now. My doc has had me add salt to my diet which has raised by blood pressure to a point that everything else seems milder.

BUT, now I'm having severe dizziness and lightheadedness and rapid pulse when I lay down fully (as opposed to propped up in bed 90% of my day). It goes away quickly. And in my head, I was thinking - it feels like the opposite of what I would expect if I had POTS/OI now.

I'm just curious because I haven't had the TT test yet and was debating if they would even consider it since getting horizontal is what is causing the most symptoms right now. And truthfully? If one is to get light headed and dizzy? Doing so while laying completely horizontal feels pretty safe compared to what I've gone through before.

Were you talking to me?

If so no

my BP/Pulse is textbook perfect when I'm in the supine position..

Now, if I have been on my feet for a while,then I have to lie down, my BP/Pulse takes about an hour to become stable/normal

However I still have POTS symptoms while laying down such as breathing regulation difficulties,SOB and especially hot flashes/sweats of head,face,neck,shoulders,arms, upper chest and back..

My torso is always seem to be hot to the touch with forehead always warmer as well, while my limbs,nose etc. are cool to cold to the touch
nose

 

[Sea]

Good to go?

The only time I will be good to go is when ALL my arteries,veins and vessels of my limbs,and brain receive 66%-100% blood flow..Otherwise as of now they are dying a very slow torturous death..

"where there's blood there is life"

I agree. In case you misunderstood, I meant that is the attitude of doctors, not the reality of the situation

 

[Tired of being sick]

Sorry,

I get bent quick and tend to overreact defensively due to the medical abuse I have accumulated over the years.

 

[Little Bluestem]

3rd
metoprolol ,"do not no why she picked this over my 1st choice"

Because then it might seem as though you are as smart as she is, which she knows that you are not.
Did she let you try the others when it did not work?

 

[Tired of being sick]

@Little Bluestem

No, in fact she told me to "keep on taking it or I can't help you"

Even though it made my POTS worse(which she refused to even believe pots even exists)
And that it made my chronic pain and stiffness worse, emphasizing stiffness,especially neck..

 

[maryb]

It makes me so very angry....know it all doctors who know absolutely nothing about some things, they put patients through hell because of their incompetence and arrogance in these situations.
I sincerely hope you find a doctor who can help you.

I don't know much about beta blockers - all I know is the hospital doctor put me on them once when I was admitted, they didn't know what was wrong with me so just took a stab......I suffered for weeks due to the side effects of propranolol.
I got off it as soon as I could, I remember those horrible little beads, my GP said oh you can't just stop them, so I counted them out religiously and came off them within 10 days.