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Derek1987

Questioning my doctor

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I see an autonomic dysfunction specialist. She is a NP but specializes in autonomic dysfunction. 

Yes they did figure out i have hyper pots. And i agree with them on that. My BP rises upon being upright along with my HR. I have elevated adrenaline in my body upon being upright.

So when im sitting or standing, my body is being overloaded with adrenaline causing panic. Its an anxiety i cant explain. (Sitting in a lobby waiting for the doctor to call me is torture)

They have me on carvedilol and mestinon. I understand their goal is to reduce my adrenaline and HR. Here is the problem. It is not working. 

Yes my HR is reduced. But it still climbs 30,40,50 plus BPM upon standing. All its doing is making my HR lying down slower and when i get up its still a huge jump and still in the hundreds. This is just after 5 mins of standing. I dont know how high it would go after that as i dont make it much longer than that. 

I dont understand the logic in what they are doing. Just because my HR is slower does not mean my nervous system is corrected. Lets say it completely eliminated my anxiety. If my nervous system is still broken, how is that going to make me function? If my body is still having trouble pumping blood to my brain, all that would do is cause more fainting/near fainting incidents. Right?

I think they are in over their heads. My specialist thinks i can be functional at some point because " you are still so young". Even if it eliminated all of my anxiety and my HR numbers are more normal looking, its not fixing the issue. 

A couple days ago it was in the 60s outside at night. I wanted to try and enjoy it. I sat in the chair on the porch. The air was cool to my skin yet i started to get hot and flushed very quickly. My body knows the air is cool yet im starting to burn up in the face. I didnt make it 3 minutes. I had to go lay down. 

I am waiting on an appointment to go to vanderbilt in nashville. 

I guess this was kind of a vent. 

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They can't fix you. That is what I was told. They can only treat the symptoms. They treat them one at a time by trial and error.

Vandy was a great experience for me. I hope you get answers and help. Living like this is very frustrating. I too start sweating when it isn't hot. Wish it would stop.

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In hyperadrenergic POTS, there is excessive sympathetic nervous system activity

A beta blocker is only blocking the beta receptor mediated effects of excess sympathetic nervous system activity

There are also alpha receptors which respond to adrenaline and noradrenaline and which could be mediating symptoms

In addition, the sympathetic nervous system releases things called co-transmitters like NPY, and purines (like adenosine, ADP, ATP, this is called purinergic signalling) that can have additional effects

So I think it makes perfect sense that a beta blocker would not block all the effects of excessive sympathetic nervous system activity

I personally have found that even though I am on a beta blocker and it is controlling my heart rate I still have orthostatic intolerance (just not tachycardia while the beta blocker is working)

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2 hours ago, POTSius said:

In hyperadrenergic POTS, there is excessive sympathetic nervous system activity

A beta blocker is only blocking the beta receptor mediated effects of excess sympathetic nervous system activity

There are also alpha receptors which respond to adrenaline and noradrenaline and which could be mediating symptoms

In addition, the sympathetic nervous system releases things called co-transmitters like NPY, and purines (like adenosine, ADP, ATP, this is called purinergic signalling) that can have additional effects

So I think it makes perfect sense that a beta blocker would not block all the effects of excessive sympathetic nervous system activity

I personally have found that even though I am on a beta blocker and it is controlling my heart rate I still have orthostatic intolerance (just not tachycardia while the beta blocker is working)

Thanks for the response although i did not understand most of it lol. 

I wonder how come you dont experience tachycardia with a beta blocker and i always experience it regardless. 

 

All the beta blocker has done was made my laying down HR drop from 70s/lows 80s to low 60s/50s. i stand up and can still get a 110 plus reading. Before the beta blocker, laying down i would be around the 70s/80s like i said and could jump to 130s 40s 50s upon standing.

 

All the medicine is doing is lowering the HR but its not fixing my broken nervous system at all. Im basically still in the same boat. Hopefully what i said makes sense. I feel bad today. 

When she filled out some long term disability(not ssdi) paperwork for me, she wrote that i had fair health. I dont believe being stuck in a bed for a year is fair. I still got approved thanks to another doctor. An actual doctor. 

 

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4 hours ago, KiminOrlando said:

They can't fix you. That is what I was told. They can only treat the symptoms. They treat them one at a time by trial and error.

Vandy was a great experience for me. I hope you get answers and help. Living like this is very frustrating. I too start sweating when it isn't hot. Wish it would stop.

She told me the same thing. There is no cure but symptoms can be managed. Well so far after a year, they have not been managed. After a year they have only tried me on 2 medications. Just waiting on vandy or a healing. 

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@Derek1987 it sounds to me that your doc gave up too early. I have hyperadrenergic pots and after being diagnosed it took my - renowned - autonomic specialist years to find the right medications. I had to try several beta blockers before finding the one that helps and also had to add diltiazem , a calcium channel blocker that dilates the blood vessels, as well as guanfacine, which helps with both brain fog as well as high BP. I also take Ritalin to help with fatigue and brain fog. To simply give up after trying a med once is not enough, good that you will be seen at Vanderbilt soon. Yes, you are young and may very well improve greatly - but there is also a lot that YOU will have to do. I am better on meds and IV fluids but I also have to be very aware of my body and take it easy, lots of rest and avoiding standing or walking etc, or I wil pass out, despite meds. I had to change my whole life to be able to function despite of having POTS. But once the meds made me more stable I was able to exercise and also have more energy which in turn helped me function more. Do not get discouraged just because your doc gave up on you - there are many more meds and treatments to try. Be positive! 

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It does sound like you could use an alpha blocker.  I completely agree with @Pistol, our stories are very similar.  I have wonderful Drs and nurse practitioners but after 5 years I still have to adjust meds fairly regularly.  It’s very frustrating.  I have tried probably 5 beta blockers, 3 alpha blockers, mestinon, midodrine, etc. etc.  I tend to get stable-sort of-then suddenly meds stop working and it’s back to hypertension etc and another go round on meds to find the right doses.  I have to change meds when seasons change it seems. I am doing IG therapy now which helps with most things but not hypertension at the moment.  My disease has been confirmed autoimmune therefore the IG therapy was approved.  It took several years and lots of tests and a lot of hassle to get my blood to Germany for the Celltrend test but was worth it to get the IG.  Until they know what causes this, and in the autoimmune case, which specific autoantibodies, all they can do is treat symptoms.  My neurologist told me when I was diagnosed that this is a marathon and you are crawling, it will take awhile.  Unfortunately I am on the extreme end of disability and refractory and am therefore hard to treat so she was right.  I credit meds, PT and deciding when I was extremely ill (84# and could barely eat) that if I couldn’t die then I would have to do everything to get better.  That change in mindset is what lead to my improvements.  Slow as h*ll though they were I am so glad that I stuck with it all now.  I am still seriously disabled compared to a normal person but I will never be normal again, that’s just how it is, but compared to how bad I was I much better now.  Hang in there.

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