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cammee

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So, I'm still pretty new to my diagnosis of pots, still working on the

right med combo. My doctor gives me the impression that he believes that

once my tachycardia and bp are under control that I will pretty much be "cured"

and everything else I experience will just go away. It's this your experence? Do the other

symptoms go away when your heart and bp get controlled?

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That hasn't been my experience but how I feel frequently doesn't seem to correlate with what my HR and BP are doing. They can be going pretty wacky some days and I feel relatively ok and other days my HR/BP are relatively normal (for me anyway) and I'm totally wiped out with symptoms.

It may depend on what "type" of POTS you have, how old you are, how long you've had it, and how many other coexisting conditions you have with it such as EDS or MCAS or other conditions.

Hopefully you will be one of the many on here who DO seem to have it go away after a period of time and with treatment. I certainly hope so!!

Many of the people who have gotten better with POTS aren't still hanging around on sites such as this; they're out living their lives. I hope that will be ALL of us some day...SOON!! :)

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Thanks for your reply. I have noticed that my symptoms don't always

match my hr or bp. I don't know what kind of pots I have ,

I'm 44 and have had symptoms for about 9 months now. I have all the

"normal" symptoms, light headed, brain fog, headaches daily,

pins and needles, heat intolerance, etc. I also have a problem with

beta blockers, I just started the bystolic, keeping my fingers crossed for it.

I have reacted badly to all the others.

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For me when I did get my HR and BP under control I felt much better. I was low BP/high HR. I havent' yet gotten an exact POTs type diagnosis, but recently had positive autoimmune blood work. Rheumy visit isn't for a couple of weeks. My flare started almost a year ago and I consider myself 80 to 90% better - depends on the day I post - hehe. I also believe that most of us learn to tolerate our symptoms significantly, so while I say I'm definitely much better a good day may entail R ear pain, throat feeling sore, no deep breaths, but HR under 95 - so I consider that a good day. I actually think most POTs/dysautonomia peeps are heros - going thru every day being symptomatic, possibly judged, not a really good treatment option that works for all or even consistently and yet we still keep on looking and trying. Even the bedridden people are positive and super helpful on this site. That being said - you can get better with POTs, - I did. I credit this forum for the recovery I've made. I'm sure you can get better too!!!! Good luck

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Cammee, I agree it really depends on what's causing your symptoms. If one only have a rise in heart rate on standing/Pots, and your young then a beta blocker alone might work. Studies on this group of patients found that many out grow it and for the most part that is the main information that has made it to most doctor's offices. Which is only a small part of the picture. Also I don't know that any long term followup was done on those patients to see if they relapsed as they got older.

Many illnesses cause a rise in heart rate and once treated the heart rate will drop. In your case from what you've shared, you also have low blood pressure another form of dysautonomia a beta blocker or blood pressure meds can drop that further. Which is why the midrone I guess. Effexor can also have an impact, how long have you been on that and did you have symptoms before starting it?

On the other things you've listed gi, pcos and arthritis, you don't mention how they are being treated. I have gi and pcos issues as well, but mine appear to be caused from autoimmune disease and small fiber nerves damaged by this process. Autoimmune causes can effect many different body processes and treating them will help improve autonomic symptoms. As many of us know though there are really very few if any ways to cure an autoimmune disease and it must be managed for life.

That is where I'm at and while we are doing our best to manage it, it is a struggle, but I have had improvements on my hr/bp which both used to swing high to low depending on upright or supine. I don't know what normal feels like and I still deal daily with pain, fatigue and other symptoms. The treatment plan is still being tweeked. I so wish I had been diagnosed sooner and treated sooner.

So, I encouraged you to follow your own heart and instincts, you know yourself. If this isn't jiving with what the doctors are saying, trust yourself first, you are your own expert. Many doctors just can't know enough about every disease process out there and few are willing to admit that they don't, instead make the patient feel like they are the problem. Don't allow that to happen to you. I've had to move on from many doctor's who didn't get it. Things are better now that I have doctors that have a better idea of what is going on with me. They do there best but still they learn things because of my case and are confounded at times.

Take care!

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As its said above me here. It all depends. For some it does for other not. I got diagnoset back in 98. Then i had had stuff fore ages it feelt ( tsome always, but got worse in my teens). I was told i would grow out of it. Jippi. But i didnt. It got worse for me, whit other stuff slowly pilling on. And how i feel dont always corelate whit me bp hr at all.

When i was pregnant my bloodpressure whent very regular, but my hart when wild. It was not bad at all really, i got really much better during the second trimester (worst in third) and then i have been better so fare after. If it last i dont know. But what it got me to reliase is how sick i have been and still are.

As its been said why u have pots plays a role in if regulate the hr and bp will "cure" u. I dont know why i have this, and what type i has. Docs here ust whant me out of their offices :blink:

But i have a very small hope now. A nero doc has been to brittan a year on a autonomic clinnic. I hope to be abel to gett an apointment whit here. She migth be abel to help. But then again hope mgth be vain and dangerous.

I wish u luck and hope u gett to regulate hr and bp and live life to the fullest.

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