Mbritt724 Posted September 6, 2018 Report Share Posted September 6, 2018 Hi all! I was just (finally!) diagnosed with dysautonomia about a month ago after months of testing. While I fainted during the tilt table test (only after nitroglycerin administration), the electrophysiologist said I don’t have POTS, but I do have “a form of dysautonomia”. I think main reasoning for no POTS is that heart rate didn’t increase by 30 BPM during standing portion (I think it was like 24 BPM increase). Anyway, upping my salt in take (thank you Salt Stick pills and Drip Drop hydration packets!) has helped with blood pressure drops and low heart rate drops... BUT my question is: do I need to push to figure out what form of dysautonomia I have? How important is knowing the actual root? So far he’s just having me start a low dose of Paxil (SSRI) and lunesta at night to help with the insomnia. AND, with that, should I try to find a different doctor who actually knows more about dysautonomia in general? This doc at least knew what it was and was able to give me a name, but he also just couldn’t give me a bunch of answers... Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted September 6, 2018 Report Share Posted September 6, 2018 I'm sorry you're dealing with this. At least you have a starting point now following your tilt. I would definitely try to see someone who specialises in this area if possible as there may be better treatment options for you. What was his rationale for the Paxil? B x Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 6, 2018 Report Share Posted September 6, 2018 My first TTT showed the same as yours, syncope after Nitro. They said it was NCS ( also dysautonomia ). Salt, hydration and Metoprolol did not work - I kept passing out ( I cannot have compression stockings ). I ended up seeing 5 cardiologists and had tons of studies done, including a second TTT. In the end my current cardiologist agreed with POTS but admitted that he did not know how to treat it. Then I got in with autonomic specialist and was diagnosed with hyperPOTS and he is treating me still. --- The reason I am telling you all of this is that ,as long as you feel the symptoms are controlled you should be OK, but dysautonomia changes and each form requires a different approach. NCS and POTS have the same treatment approach but they do change in symptoms over time. In my case it was VERY important to find out the type of POTS because it gets treated so differently from other types. So - knowing what TYPE of dysautonomia you have can make a big difference. Good luck!!!! Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted September 6, 2018 Report Share Posted September 6, 2018 Some people don't seem to need to know or care what type they have. Personally I am one of those people that need to know. And my underlying cause, which is still unknown right now. I think it matters because treatment would be different for each type and I refuse to be a guinea pig any more. I seem to react differently to medications and I refuse to take medications just to confirm a diagnosis. I would try to find a specialist. Quote Link to comment Share on other sites More sharing options...
Mbritt724 Posted September 6, 2018 Author Report Share Posted September 6, 2018 Thank you, all! I would like to get to the root of it all and figure out the why behind it. While the salt/water is helping, it's not 100% and I'm still dizzy and lightheaded a lot of days.The blanket statement of "you have dysautonomia" is as vague as "you have an autoimmune disorder" & I feel like it could be 1,000 different things. @bomb3ll3: Paxil rationale is that many patients with dysautonomia go on an SSRI briefly to help calm their ANS ... I actually haven't started it yet because I'm weary of any new drugs, especially brain altering ones... ugh. @pistol: thank you so much, i appreciate you giving me the insight that dysautonomia itself can shift & change. i'm eager to find the root for this for sure! @stayathomemom: Thank you for your feedback, too. I'm just feeling at a loss as to who/what type of doctor I should go to next? Mostly because all of the specialists I've found listed online specialize in POTS, ED, NCS, etc... since I haven't "officially" been DX with anything specific, I don't even know who to go to 😕 Do I just try to find a general automatic specialist and go from there? Not that it's any different than anyone else's story, but I've already been to two cardiologists, an electrophys (the one who finally dx), an OBGYN, an endo, and two GPs (just because the first one completely dismissed me when it all started and tried to write me xanax for "anxiety"). Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted September 6, 2018 Report Share Posted September 6, 2018 1 hour ago, Mbritt724 said: I'm weary of any new drugs, especially brain altering ones... ugh. I'm also skeptical of SSRI use to treat dysautonomia. There are no published placebo controlled studies evidencing benefit however many people do anecdotally report positive experiences. Certainly Sertraline (another SSRI) did nothing for me, and I regret this being on my medical records due to the psychosomatic inferences. Personally I would rather have the Xanax as benzos do help me by lowering sympathetic activity. At least the SSRIs are a comparatively safe class of drug to take compared to some of the alternatives. B x Quote Link to comment Share on other sites More sharing options...
p8d Posted September 6, 2018 Report Share Posted September 6, 2018 There’s a list of Drs that treat dysautonomia on the main page of this site. I love my neurologist who treats me more holistically, all symptoms and body parts involved, as opposed to my EP who mainly deals with BP/HR. Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted September 6, 2018 Report Share Posted September 6, 2018 I second what p8d says about a holistic approach. I did not start to feel better until I saw an integrative medicine specialist (an MD) who changed my diet and addressed my GI issues, which seemed to be at the root of my POTS diagnosis. Controlling just the POTS symptoms themselves was only a band-aid approach for me. Quote Link to comment Share on other sites More sharing options...
Mbritt724 Posted September 6, 2018 Author Report Share Posted September 6, 2018 2 hours ago, JaneEyre9 said: I second what p8d says about a holistic approach. I did not start to feel better until I saw an integrative medicine specialist (an MD) who changed my diet and addressed my GI issues, which seemed to be at the root of my POTS diagnosis. Controlling just the POTS symptoms themselves was only a band-aid approach for me. I'm all for a holistic approach - I'm really not wanting to load an already upside-down ANS with a bunch of unnatural meds! I actually have an appointment with a functional medicine doctor who has helped a handful of people i know with Lymes and autoimmune things and I'm hopeful he will be able to help or at least recommend next steps for healing the whole issue rather than bandaid-ing the symptoms! Quote Link to comment Share on other sites More sharing options...
Mbritt724 Posted September 6, 2018 Author Report Share Posted September 6, 2018 3 hours ago, p8d said: There’s a list of Drs that treat dysautonomia on the main page of this site. I love my neurologist who treats me more holistically, all symptoms and body parts involved, as opposed to my EP who mainly deals with BP/HR. Yes thank you! I've seen that list, but have noticed that most of the docs have specialties (e.g.: POTs, Ehlers Danos, etc.)... will doctors take on new patients who have yet to have an official, specific dys diagnosis? I called one at Duke and they said she was only taking POTs patients... Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted September 6, 2018 Report Share Posted September 6, 2018 36 minutes ago, Mbritt724 said: Yes thank you! I've seen that list, but have noticed that most of the docs have specialties (e.g.: POTs, Ehlers Danos, etc.)... will doctors take on new patients who have yet to have an official, specific dys diagnosis? I called one at Duke and they said she was only taking POTs patients... See if she will take you in order to confirm if you have POTS. If she thinks you have a different one then maybe she could send you to a doctor that specializes in that one. The only other option would be to try something like mayo to get the diagnosis and then find a specialist for what mayo says. My cardiologist diagnosed me with POTS, then when I was having breakthrough tachycardia he sent me to a specialist a few hours away who confirmed my diagnosis by redoing all of my testing. He is a neurologist that specializes in POTS; NCS; PAF; Secondary Autonomic Failure; MSA; Autonomic Neuropathy (including diabetic) Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 6, 2018 Report Share Posted September 6, 2018 @Mbritt724 - an autonomic specialist is supposed to diagnose and treat you for autonomic dysfunction. They may specialize in one area but a true autonomic specialist will be able to pinpoint what type you have and make treatment recommendations. If they only see patients with POTS then they are not autonomic specialists - they may CONCENTRATE on patients with POTS but they are not general autonomic specialists. If you would like to get an exact diagnosis then I would see one of the specialist centers. Quote Link to comment Share on other sites More sharing options...
Mbritt724 Posted September 8, 2018 Author Report Share Posted September 8, 2018 On 9/6/2018 at 3:42 PM, Pistol said: @Mbritt724 - an autonomic specialist is supposed to diagnose and treat you for autonomic dysfunction. They may specialize in one area but a true autonomic specialist will be able to pinpoint what type you have and make treatment recommendations. If they only see patients with POTS then they are not autonomic specialists - they may CONCENTRATE on patients with POTS but they are not general autonomic specialists. If you would like to get an exact diagnosis then I would see one of the specialist centers. Thank you- very helpful! Quote Link to comment Share on other sites More sharing options...
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