rondo

Just saw this post and wanted to weigh in on a possible explanation for your observations that what should be beneficial makes us feel worse... 15 years ago, after going through cancer treatments, I was weak and had balance problems. I designed my own home exercise program to help me recover. It includes some Qi Gong, some PT exercises, and some yoga-ish moves that I found in a book about Taoist self care called The Complete Book of Self Healing. It kept me fit and flexible for years. Then more recently, as my dysautonomia has progressed (I have PAF) I found that although I could get through my exercise routine ok, I consistently felt horrible afterwards, so I reluctantly tried stopping. Sure enough, every time I go back to it, same response, so I finally just quit. It was pretty upsetting that after so many years, I could no longer tolerate it. Then I read somewhere that Qi Gong, Yoga, and meditation techniques in general boost parasympathetic function, while reducing the sympathetic response, which is exactly what the average person needs. My particular condition (admittedly it's considered a rare one, so I don't know how this may apply to others) involves very low sympathetic function with normal to increased vagal tone. So I think this is the mechanism in my case. I struggled with it for a long time before I got my recent diagnosis from a university autonomic disorders program. Well, I am still struggling, but at least we know what is going on and I am finally on some meds that help instead of making me worse, (like all the heart meds the cardiologists tried...) It is so important that we listen to what our bodies tell us and not be dissuaded by well-meaning people (especially physicians) who tell us what should be good for us and don't believe us when we report that interventions that help most people can actually make us worse.

Thanks for the feedback. It seems many people need to come up with some variation of dosing that works for them. My testing has all been done at Stanford. They seem to have a pretty dedicated group of specialists there. It took a long time, but now my case seems to have piqued their interest, so I think I am finally getting somewhere.

Thank you. To me, short duration seems like both an advantage and a disadvantage, because it is out of your system quickly, and easy to take another pill if needed. But I see a lot of people commenting that they weren't on it for long , so I wonder if that's because it didn't work, or if it worked at first, but lost its effectiveness. The other thing is, if it works well at first but requires increasing dosage over time, is that because of tolerance to the medication, or because the dysautonomia is getting worse? So many questions!

Well here is a follow up in case anyone is interested. OI symptoms escalating slowly despite hydration, salt, compression wear and "taking it easy " as advised by my neurologist. (Those measures do help a little) Brain fog, lightheadedness and visual disturbances when upright definitely worse. July 6, they did an extended TTT with transcranial Doppler because they suspected OCHOS as the 10 min TTT back in April was normal. This time I did meet criteria for delayed OH and neurally mediated syncope. 6 weeks later we still don't have CBFV results. They started me on Midodrine 2.5 mg 1-3 x daily along with continued volume loading etc. Also they are going to do skin biopsies and other tests to look for neurodegerative disease and amyloidosis given my age. (I just turned 65) The effect of the Midodrine was quite surprising. I didn't realize how bad I'd been feeling. I call them my Wonder Woman Pills! It seems to wear off and produce symptom rebound at 2.5 to 3 hours. At that point I need to take a rest break. The doctor said I can repeat the dose at 3 hours, which I only do if absolutely necessary because I am concerned about building a tolerance to it, and I don't really have a diagnosis yet so not sure if overdoing it could cause harm. BP has been fine; they warned me to monitor. Has anyone else had Midodrine work this way for them? And if so, did you need escalating doses over time get the same effect?

My neurologist is actually a neurology resident. I was referred to her by cardiology after I had a mild stroke as a complication of a cardiovascular procedure (that was done to try to correct what are most likely autonomic symptoms) She was the first doctor who listened carefully enough to me that she put it together and suspected a dysautonomia. Just by coincidence, her senior attending is a dysautonomia specialist! So it's all good if that's what it takes to get a diagnosis... Some doctors are purely clinicians; others are scientists. The scientists have more curiosity and will try harder to figure you out. The clinicians take more of a standard mechanistic approach that can be frustrating if you have something that doesn't fit the typical presentation. They are afraid of getting sucked into a complex case they can't handle or that will take too much time. I see that in a lot of the posts here. It helps if your doc is willing to be a scientist! The time they spend learning will help you and their other patients as well. And I think that the residents who signed up for this course might be of the scientist persuasion.

I don't have a diagnosis yet but my neurologist ordered TTT for suspected Cardiovascular Autonomic Neuropathy. It is scheduled for this week. I am pretty sure I have neither POTS nor orthostatic hypotension based on self administered orthostatic vitals. I definitely have orthostatic intolerance. Once my symptoms start, the longer I remain upright, the worse my brain function gets. So I do think my cerebral blood flow becomes impaired. It improves if I sit down or lie down. I had to stop working because my job literally requires me to think on my feet all day. I suspect the TTT I will be getting will not include CBFV, and so I am pretty worried it will come back as "normal " (does that sound twisted, that I am worried my test for a serious and disabling condition will come out normal!?!) After reading about it on this forum, I read some of Dr Novak's work. It seems like a no brainer to include CBFV in all TTTs. (pun intended:)

Hi all. I was found to have macrocytic anemia years ago. Anemia means not enough red blood cells; macrocytic means they are larger than normal. This type of anemia is usually caused by B12 deficiency. The deficiency itself can be from the inability to absorb the nutrient, rather than an insufficient diet. You can look at your CBC results and find the information. MCV stands for Mean Corpuscular Volume. If the value is elevated, that is macrocytosis. B12 deficiency can cause macrocytic anemia, neuropathy and cognitive defecits, or exacerbate these conditions if they are pre existing. So it seems reasonable that someone with dysautonomia would feel worse while B12 deficient. My doctor originally recommended B12 because of my anemia, but I notice that my neurologic symptoms are better with it as well. If I don't take it for awhile my anemia will come back and my dizziness and neuropathy are a little worse. Hope this helps So to answer your question, yes I definitely feel better on B12. Since it's a water soluble vitamin there is little or no risk. However if you are getting a blood test for B12 levels you need to stop taking it 3 to 5 days in advance so it doesn't come back falsely elevated.

Mike you definitely have the best approach by trusting your instincts, taking responsibility for learning about your issues, staying on top of your care, and never giving up! I salute you for your persistence. As patients, we just want to feel better and it's up to us to help our doctors help us. As a long time cancer survivor, I learned to assure providers that I am not complaining, merely reporting. How else would they know what we 're going through if we didn't? But sometimes you just have to keep track and make sure they are doing their jobs. If the doc is serious about writing up your case, I think you should consider it. Doctors learn the most from challenging cases, and you will be helping others.

Thanks. Will do! Interesting about the PVCS for sure. Those were what finally drove me to the cardiologist, who seemed genuinely puzzled that I was having such difficulty with them. He did also consider me anxious and hypertensive when I had never had those issues before. I do get nervous with new providers because I am afraid they won't take me seriously. Kind of a self fulfilling prophecy!

It does help, doesn't it? Although at this point I experience daily symptoms, some days they are quite mild and I can function normally. On those days I'm fully convinced I'm finally recovering. Then I'll have a Wipeout day and tell myself "what was I thinking ?" I was so relieved to learn about long Covid because I thought it meant the cardiovascular symptoms would get better. But 3 years into it not so much...

Thank you so much, Pistol. I guess I've just been going through a lot for a long time, like everyone else here (I think some of the dysautonomia started with my cancer treatments 15 years ago. The cardiovascular stuff didn't really cause a problem until after I had Covid-19) I know it's chronic and likely manageable at this point, but I keep going through a seemingly endless cycle of thinking I have THE answer of what's wrong so I can accept it and get on with my life. Really, dealing with the aftermath of successful cancer treatments 15 years later is a nice problem to have. Bottom line is I just want a diagnosis so I can stop doubting my sanity. And it really helps to know that I am not alone in this. Looks like Horizons 1 and I have a lot in common.

Hello. Newbie here. No dx yet but had to jump in. My personal journey started with symptomatic PVCs in early 2020. Started with a local cardiologist. Eventually he found a congenital vascular anomaly and referred me to a university hospital for that. I had surgery in 2021 but the PVCs and associated symptoms persisted and slowly escalated. I had PVC ablation last summer. Complications from that led to more imaging and discovery of another anomaly, which was corrected in Dec 2022. Meanwhile my symptoms are ongoing and slowly getting worse. What are the symptoms, you ask? Pounding, slow pulse, chest pain, dizziness, lightheadedness and brain fog. Triggers are prolonged standing, especially after positional changes like bending over, and light or heavy lifting and activity in general. I can do a certain amount of activity but then I have to sit down or lie flat, which always makes it better. I ended up having to stop working because I couldn't do the essential functions of my job. I now have less stress than I have in decades, and am able to manage my day to optimize how I feel but actually more problems now than when I stopped working. I have told this to all 4 of my heart doctors many times and none of them EVER mentioned orthostatic intolerance. Fortunately the complication (minor stroke) from my ablation got me referred to a neurologist who happens to be a dysautonomia specialist. Of course there's a lot more to the story and a lot of other weird symptoms, but my point is that I am scheduled to have autonomic testing in a few weeks. I am TERRIFIED that the testing won't show anything and I will be labeled a hypochondriac. (I Iook healthy, but complain of dizziness and chest pain yet no significant heart disease) I have a ton of dysautonomia symptoms but don't fit any category. I have done orthostatic vitals enough to know that I have tachycardia occasionally, hypotension occasionally, hypertension occasionally, but mostly normal. I am symptomatic daily but feel best early in the day and after resting. So I usually feel fine during actual doctor visits and this test is at 8 AM so I predict that I will be feeling fine. Anyone have any advice? Could the test show anything even if I am not symptomatic at the time?