The Pots Neurologist Said He Can't Do Anything For Me -- Bummed Out

[lynnie22]

I hope you don't mind my venting -- but when you've been to dozens of doctors who do nothing and even the POTS specialist says he can't do anything as you continue to get worse, it's pretty discouraging! I saw him a few days ago, and he kind of dismissed me with 'sorry'.

Because my blood pressure is labile, and goes from weeks of very low to a week of very high, the specialist said there's nothing he can give me to help me. I am on a continually changing dose of propanalol, which, because of my currently very low blood pressure is so little that it is not controlling the tachycardia. I am set up to return to Mayo in a month (it's been three years) -- and HOPE they can offer something. My first visit three years ago yielded a diagnosis but not a search for a cause and a time limited treatment that unfortunately didn't work. I have been to so many doctors in NYC since, including three specialists, and no one has so far offered any help. I know I sound so negative, and I apologize. I also know it sounds so unbelievable but it's what's going on. I'm just so bummed. And then I have fluctuating oxygen saturation levels, going quite low at times because of a shunt which may interfere with my flying in a plane -- to get to Mayo. Anyway, I'm looking for hope I guess. I have read many, many posts here and it seems amazing to me that no one has ever looked for the cause of my POTS nor really tried a treatment. I am hoping that Mayo this time will investigate it. I didn't see a neurologist last time but am scheduled to see one as part of my week there this time. But I live in NYC and you would think there would be someone who could help.

Anyway, I have a lot wrong right now, and keep on trucking, hoping that someone can help me feel better. But it's seeming rather bleak.

Thanks for listening.

[corina]

I'm so sorry lynnie, I can relate to how you're feeling, I've been told "there's nothing we can do for you" too. And I got slowly but steadily worse. One day though someone pointed out octreotide to me and after lots of investigating and talking to my neuro I was allowed to try it and it turned out to be of huge help. Reading your story I don't think octreotide would be your "magical med" but I'm telling you this because there's always hope! I was in a wheelchair (power) and most of the time homebound. My doctors (cardio/neuro/gp) told me they hadn't expected to see me walking into their offices ever and yet I did! Hope this makes you feel better! Best of luck on your Mayo appointment Lynnie!

[SarahA33]

Hi Lynnie,

Im actually embarrassed to list the amount of doctors ive seen and tests Ive had. It can be such a discouraging process. I have improved so much since I found my team. They are wonderful and aren't afraid to try out of the box treatments. Standard just doesn't seem to apply to us all the time. I want you to know that there are doctors out there who care and it may take some time (took me 7 years) but I did. You will get through this, the saying "this too shall pass" really does apply to POTS because our bodies are always reacting differently to the same meds (ie, propranolol) I, too, have to self adjust my dosages with this med along with the clonidine depending on what my BP looks like that day.

Hang in there til Mayo. Good luck with everything... things will look up

[CarrieJessica]

Don't give up. I thought it was all in my head and that I was just a wus for so many years. The doc who diagnosed me with TTT who "knew all about POTS" put me on a pretty standard POTS treatment, however it made me worse. I ended up in the hospital. He had no back treatment options and apparently wasn't will to research anything. I was ready to throw in the towel and was slipping into a depression. I then found out about a specialist (like your situation, very far from me). I am now receiving a treatment plan that although has to be constantly modified it works for me. Now I am not saying I am well but I am more manageable.

Hang in there!

Carrie

[Katybug]

I'm sorry that's how the appointment went. Have you pushed any of your docs to test for specific diseases as an underlying cause. I had to do my own research and press my pcp for referrals to the docs he knew that could help me test for each disease I suspected. I was right on the EDS and MCAS. But my pcp didn't have a clue about them and did get me with the right immunologist. He didn't even know where to send me for the EDS. It turns out one of the top EDS geneticists are right here in my city but I had to find her on my own. I still think I have one more issue to track down but I'm taking a break until the first of the year....it's exhausting to do all your own research, diagnosing, and getting to the right specialist for each thing. I realize now that most of the unhelpful doctors just didn't know what was wrong or have any suggestions. The ones that were rude didn't know what was wrong and didn't have the gumption to admit it. Their problem, not mine. But, our underlying issues are often as unusual and rare as pots, itself.

[Joann]

Lynnie, so sorry you are a having a tough time. I don't have a inspirational story, but if misery loves company I am there for you!. I am also trying to find a cause and course of treatment. Just recently went to a POTS specialist who now wants me to see her boss, because although she sees thousands of POTS patients my case has her stumped. In fact, she is now questioning if I even have hyper POTS, and instead have a vascular/structural problem! It has been two years, I got a tiny bit better but then 6 months everything went bad again. I am told that the current doctor I am seeing is a great doctor and that they will not give up. So I guess we just have to hang in here and keep bugging the doctors until they help us.

The good thing is we have this site to come to.

[lynnie22]

Thanks for all your support. It does help to hear that I'm not alone in hitting so many closed doors, but doctors who specialize in POTS giving up? But your stories reflect this too.....I'm glad you've found some answers. If I didn't have so many other problems, maybe I'd feel less hopeless. It's like they have stockpiled on top of one another, but the POTS just keeps getting worse. As far as as being tested for underlying causes, Katy, my PCP knows nothing about my condition, and doesn't test for anything. I've seen him for years, and know I have to find other doctors. I will get someone to test me for all the possibilities. I am hoping to make it to Mayo and am hoping that Mayo will get past the first base this time. I don't know. I met with a cardiologist recommended to me about a month ago who told me he could get control of 90% of my issues. I had such hope! He's a big shot, and said things that made sense, but is so busy that he doesn't even get back to me -- and the truth is, he's not a POTS expert, although he knows about it, unlike most of the doctors I have seen. Anyway, the proof of his help will come when he actually returns my phone calls or sees me again....It's just so discouraging -- as you all know! Every spare moment at this point is spent at a doctor, with little to show for it, at least as yet. But thanks for encouraging me.

[katrina13]

Oh, I know that feeling. So sorry! I can't imagine what possesses doctors to tell anyone that there's nothing to be done; it's *so* damaging to hear that, and *so* powerful to be given even a tiny thread of hope. Just know that these days there are more treatment options than there used to be, and you just need to find a doctor who either knows about them, or is willing to read about them and let you try them. It could even just be a local GP. Hang in there, and remember you're not alone.