Discouraged And Confused After Autnomic Testing

[skiberthoud]

So I had my autonomic testing today. Where to begin? Ok, last month I saw this neurologist for the first time and he said he very strongly felt I had immune mediated dysautonomia so he set up testing and started me on mestinon. I noticed positive results from the mestinon right away, but it cerainly didn't stop all my symptoms. So the sweat test determined that i "sweat like a man," 3x more than the normal woman. He was just happy that i was sweating. Nothing else was abnormal. Of course, there was the TTT...my HR went up 50+ beats at first then kept oscillating up and down and eventually by the end of the 10 mins was back down to its orignal rate. Therefore I was told that i have no nerve damage (he said it would only be an issue if it went up during the 10 mins, not from the beginning).

OK, so this is good news, but i don't understand...what's wrong with me. Does that mean that I don't have dysautonomia? What's with the tachy that is a daily occurance? The nausa, vomitting, other GI issues (which by the way are virtually gone will taking the mestinon), dizziness, full body tremors...that's all what? So I left there upset with no answers and no where to go next. I thought I had finally figured out where I "fit." Oh well...I will keep living each day like I do and enjoy them. I keep saying that an illness doesn't define the person and I guess that's a good thing becuase I can't even define the illness! I will be following up with my PCP in a couple of weeks - we'll see where we'll go from here. Any thoughts for me would be appreciated! You all seem to have a wealth of knowlege and experience and I'd love to draw from that....Thank You!

[flop]

Hi tablet,

do you have the actual numbers from your TTT? In particular the supine heart rate, how high your HR went and how fast it went up? Do you know what happened (if anything) to your BP during the TTT?

If your HR went up 50/min at the start of your TTT then it would suggest autonomic dysfunction / POTS.

Flop

[Chaos]

How frustrating! I had a somewhat similar experience with my TTT etc. The local doc said I didn't have POTS but when I went to a big center,they said I had POTS plus some other stuff.

How long was your TTT? I know when I had a neuro autonomic work-up their work-up was not nearly as thorough as the cardiologist work-up. The neuro tech said they only do a 10 minute TTT so they wouldn't have picked up my neurocardiogenic "syncope" with a 10 minute test.

Sorry you're having a tough time right now. Sounds like you still have some kind of autonomic dysfunction going on. Since the nomenclature for all this dysauto stuff keeps changing all the time, we may ALL well end up with different diagnoses down the road than what they are calling it now.

[issie]

Having a pulse increase of 50 plus is indicative of POTS. That is the autonomic nervous system. It has to do with the parasympathic and sympathic nervous system. Not so much the nerves but the function of two systems in your body. It relates to the electrical systems.

The QSART test, sweat test, is to see if you have small fiber neuropathy. Which does have to do with your nerves themselves. Since you sweat good, you apparently don't have any type of neuropathies -- nerve damage. That's a good thing.

I agree with Chaos, you do need a TTT that is at least 45 minutes long. This will show up other issues that may not show up in 10 minutes. An Electrophysiologist (Cardiologist that specializes in the electrical system) is the person that would do that.

You are ruling out issues, and that's a good thing. You know more than you did. It will just take time and patience. Not to mention a lot of education on your part, to learn where to go next and figure out what it all means.

I'm sure you will get other post that can help you to sort this out. I'd look for a doc that specializes in POTS and the electrical systems. Since the doctor first suspected an immune issue; did he do testing to determine if that was the case? Did you have blood work to rule out things like Lupus, Lymes etc. Has he done any genetic testing to see if there is EDS (Ehlers Danlos) or do you have any indication of that being a possible issue (Joint Hypermobility)? As for the naseau and vomiting -- I'm REAL aware of the naseau, have that every day. But, I don't recall anyone speaking about throwing up. Not sure if there is a connection. Probably, I just haven't done it myself; just thought I was going to. Many people have IBS and GI issues. The dysautonomia affects that.

One thing you do need is to get your records. Give the doctor enough time to do his dictation and then collect all the data. Sometimes, they verbally don't tell you things, but they put them down in your records. It will be necessary for your next doctors.

Hope this helps some. Just 'HANG IN THERE' the road is long. The first step is short, but you made it. Now, for two, three, four.

[skiberthoud]

Thank you all for your replies.

flop - I don't have the numbers from the test. I asked him to send them to my PCP and she will email them to me. Should have just asked when I was there, but I was a little overwhelmed when he told me that my heart was just reacting like a deconditioned heart or an anxious one. Anyway, what he told me was that my HR supine was 70 and that it went up to the 120's right after being tilted. He said it then went down and came back up and it did that a few times, as if i was just nervous. But since by the end of my time up it was back down to normal then it isn't pots...he said that my HR would have started lower and continued to climb and would be higher at the end of the test. He told me my BP was "fine" the whole time. I am curious to see for myself because things were pretty blurry and spinning when I got tilted - good thing for being strapped in! i do check my bp daily and it's consistantly inconsistant. i'm usually around 118/68 supine and then standing sometimes i drop to 109/60 and sometimes i go up to 145/90-110.

chaos - thanks for your experience. funny, i did go to a dysautonomic specialist that was highly recommended. It was all very quick - qsart, val salva, deep breathing test, crainial dopplar for blood flow, skin biopsies and TTT - in and out in an hour. The TTT was 10 min sup and 10 min tilted.

issie - you're right. I agree. I am glad for no neuropathies. I haven't really been tested for much of anything. I went to my PCP about this in June (at that time i wasn't having daily symptoms - just big episodes) and she did your typical blood work and 2 24 hr urines and the plasma blood test to rule out a pheo. Shortly thereafter I started having daily issues, and my GI issues involved lots of nausa and vomitting, constant bloating and the feeling of needing to have a BM ALL the time, even if i just had one...so off to a GI specialist i went. She saw me for maybe 10 minutes, said "I think you have pots - go get a tilt table test," did a blood test for celiac (neg) and off to the dysautonomic specialist I went. So yes, the journey is just beginning. I do have an excellent PCP and we're going to pow-wow. Thanks for the tip on looking for an electrophysiologist. And yes, I will be getting all my records. I'm beginning to see how important that is.

I have to say that I am feeling much better about it today. Honestly, nothing has changed except that I have the positive news of no nerve damage. And the sun is shining today!

[juliegee]

Hi Tablet-

I'm with Flop. I think you found right where you belong . Sorry. From what I understand more than a 28-30BPM rise anytime in that first 10 mins. is consistent with a POTS DX. It is so discouraging to see so many "experts" in the field who aren't aware of the correct diagnostic criteria.

BTW, I'm so with you re. the sweating. So embarrassing, especially when I exercise. That, too, is consistent with dysautonomia. Some of us over-sweat. Be sure to replace that lost fluid with lots and lots of water or an electrolyte drink.

Shake off that "expert's" findings and use what is helpful to you. You sound like you've assembled a really helpful team of doctors. That really makes the difference. Best of luck sorting it all out.

Julie

[nmorgen]

You definitely need the cardiac TTT. I also passed the 10 min neuro TTT, but they said I was symptomatic as my pulse went to 29, but it wasn't conclusive. The cardiac test was conclusive as my pulse began to skyrocket the longer I was up and my pulse pressure narrowed signifigantly along with getting hypertension. It was funny b/c I was actually having a really good day and felt fine during my TTT. I told my mom when I came out that I think I had passed and didn't have POTs, lol. I was wrong. Even though I felt fine that day my body was still POTsy. I really don't think you can rule out POTs with the 10 min test. I think my problem is that I have the hyper POTs and my body doesn't usually just jump into hyper as soon as I stand. It takes a few minutes to get that norepineprine circulating and my heart responding to it. Of course my body doesn't just settle down after sitting or lying down either, b/c the norepineprine is still circulating through my body.

I do have the small fiber neuropathy in my feet, but the rest of my body sweats like mad. I think it's great that you have no nerve damage. I get a lot of pooling in my feet and I think that might be my problem.

When I had my stress test 3 weeks ago my cardiologist told me that I wasn't deconditioned b/c my heart rate responded normally until the bike resistence really kicked in and then my heart rate soared. He told me that if I was deconditioned my heart would have taken off from the beginning, so maybe that was the thinking your neuro applied. Regardless, I would still try to find a cardiologist who could do the cardiac TTT. Good luck.

[flop]

Tablet, I think that your doctor is wrong. Your heart rate jumped up more than 50/min at the start of the tilt. As far as I understand that means POTS. The criteria are "an increase in HR of 30/min or to more than 120/min within 10 minutes of upright tilt" (this is why many TTT are only 10-15 mins as most POTS shows up early but there are some forms that only show on prolonged TTT).

Once you get your TTT print out maybe you can get an appointment with someone more knowledgable about POTS to get it interpreted?

Flop

[potsgirl]

Tablet,

Since no one else has really addressed your BP during the tilt and your everyday readings, your BP is also consistent with a POTS diagnosis. As you've read, your HR should increase by at least 30, but your BP from supine to standing usually should vary a small amount for what my Mayo doctor considers a true "POTS" diagnosis. Some physicians disagree with this, but I think it's the norm. I found out that while I didn't have POTS per se, because my BP goes from about 105/70 supine to 75/60 standing, I do have other dysautonomia problems, especially orthostatic hypotension (a large drop in BP when going from supine to standing and causes symptoms such as fainting).

Is it possible for you to go to Mayo/Cleveland Clinic/or any of the other recommended doctors/clinics listed on this site? To me, you sound like you have a classic case of POTS. Welcome.

Cheers,

Jana

[scarfgirl]

What is 'immune mediated' dysautonomia? I've not heard that term before.

[skiberthoud]

Thanks, everyone, for your support. Even if I don't belong here I want to stay because there's such a great and interesting cross-section of people here! So much knowledge! Most have you have so much life experience to share!

KeXia - an immune mediated disease is one that occurs from an abornmal immune response - typically with your immune system over-reacting.

Potsgirl - funny thing is that I did see someone recommended on the website's list. I like him, but I get the feeling from him he's limited in his interests and if you don't fall into his box he's not too interested. I could be wrong...we shall see. As far as traveling to another clinic...I'm not sure how I feel about it. At this point I'm not sure I "need" a definate diagnosis mentally. I'm curious to hear your opinion on that. This is my take: I'm going to work with my PCP, who so far has proved very helpful, to get me as healthy as possible. I figure that if we rule most other things out and work on improving my immune system, adrenals, etc... and I can get to a point where I'm consistantly functional then I will be happy. I think I can be ok assuming i'm pots positive. What do you think? Do you feel that it is very helpful to have the official diagnosis? This is open to anyone's comments. I'd love to hear some personal opinions...

[lieze]

I have not had a tilt table test but my heart rate is similar.

I don't think it jumps as high as yours does but it goes up to 120-130 beats per minute upon standing but then comes back down to a somewhat normal rate. It can volley up and down from that point especially if I am just standing still. My body seems to not like that and prefers light activity it seems.

My bp's also rise with standing and come back down again.

So it seems that standing up just throws me off and then I come back to a norm.

I would suggest you think about treating your symptoms.

I had a lot of the gi involvement at first but not so much now.

SO maybe in time that can improve for you.

We can hope.

I wonder if we do have this tendency towards POTS related to immunity?

Did you have a virus or some other issue prior to your onset of symptoms?

[issie]

As far as traveling to another clinic...I'm not sure how I feel about it. At this point I'm not sure I "need" a definate diagnosis mentally. I'm curious to hear your opinion on that. I think I can be ok assuming i'm pots positive. Do you feel that it is very helpful to have the official diagnosis?

If you feel you have all the answers you need and you will not be wondering . . . do I, could it be, what if it's. Than, go with what you know. If there is a part of you that needs complete affirmations - you won't be satisfied with just probabilities. Ask yourself, if knowing more will change anything - is there something that can be done about it - can my quality of life be any better if .....If, you have any yes answers - than you probably need more testing. If you feel, you can accept where you are and there is nothing (at the present) that can be done - GO, live your life and keep your sight on brighter days --SOON, TO BE IN THE FUTURE. Keep your focus and keep your priorties straight, and everything else will fall into place and you will be the best you can in life with the present situations. Remember the promise at Rev. 21:4 -- a little while longer and we will have no more pain -- Jehovah God's promise for a future paradise on earth.

[skiberthoud]

Thanks, Issie. That's sound, logical reasoning to me. I know that no matter how hard we try, perfect health is unattainable at present. I look forward to seeing what perfect health feels like in the paradise soon to come. And Lieze, I do believe that a lot of our problems are caused by our environment and some of the poor choices we have made as humans (both as a whole and as individuals). I think there is a correlation between immunity and our issues. Even though, looking back over my life, I seemed to have little hints/symptoms since I was a kid, it wasn't until a virus last winter that my symptoms got really bad. I also really believe in the "rain barrel" effect. Once the barrel is full it overflows. Between ignored food and environmental allergies, years of lack of sleep, increased external and internal stress, a rotten environment...your body can only handle so much. But yes, there is hope, and that's what keeps us going!

[comfortzone]

Thanks, Issie. That's sound, logical reasoning to me. I know that no matter how hard we try, perfect health is unattainable at present. I look forward to seeing what perfect health feels like in the paradise soon to come. And Lieze, I do believe that a lot of our problems are caused by our environment and some of the poor choices we have made as humans (both as a whole and as individuals). I think there is a correlation between immunity and our issues. Even though, looking back over my life, I seemed to have little hints/symptoms since I was a kid, it wasn't until a virus last winter that my symptoms got really bad. I also really believe in the "rain barrel" effect. Once the barrel is full it overflows. Between ignored food and environmental allergies, years of lack of sleep, increased external and internal stress, a rotten environment...your body can only handle so much. But yes, there is hope, and that's what keeps us going!

Can you handle yet another person's story lol? Anyway welcome and yes these folks here are an amazing wealth of compassion, intelligence, and real lived out life experience that they share for the benefit of others ... I 'heart' dinet forum!

I'm seeing that the 'gray zone' in all of the dysautonomic stuff is pretty consistent here.... Not perhaps so much in the cut and dried diagnosis criteria and it's application to people suffering - but in the lived out experience of each individual. Symptoms can wax and wane - come on full force ... or fade for a bit. Your 'window' of testing time can only be loaded with so much hope LOL....your body will do what it does regardless of what it did yesterday or what it may do tomorrow. So on we go seeking answers, applying knowledge, learning from others etc.

My coming here to Dinet was for increased sweating, tachy heart rate to 140 with no explanation in standing up, blood pressures varying widely, inability to carry on a normal day without rest in the day - completely turning my world upside down kind of thing. Leg weakness, body pains, crud a bunch of stuff.

It is now thought I have a very complicated set of symptoms that all interplay with each other...(well that part I knew haha!) - but the autonomic doctor (Dr. B.P. Goodman, Mayo) amazingly teased out just about each and every factor in a two week work up. Here my body 'behaved' in the short triplet of autonomic testing....out of the blue -- after a round of beta blocker trials by my home primary doc - the heart rate 'cured'? itself. Even without being on them for a week before the testing. Yet because of four joint replacements, hypermobility syndrome, post op neuro issues he identified, and a newly found small fiber neuropathy.....everything started to make sense. Impaired glucose issues, hypertension, sfn - and sleep apnea now...explained yet more. The laying and standing catecholamine test I flunked....yet how that impacts things -- it's pretty messy. Perhaps a messed up fight or flight system with increased hyper adrenergic state...

In the end my treatment is probably a lot like someone who got a POTS diagnosis (or a variant thereof)....I am to exercise forever till I die (only because I can while my joints last - I do understand many POTS patients are severely limited in this ability), I am to attain a normal weight, I am to wear compression stockings while on my feet, I am to stay super-hydrated with G2 or water. With having been a nurse I'm trusted to titrate my new ordered b/p med regimen as works - but will call the doc if it's getting yet more widely labile - (which happens due to venous pooling d/t sfn) - my b/p is purported to possibly get even trickier to manage with the weight loss. My muscular deficits are likely permanent damage from joint replacement surgeries. My baseline of hypertension - confounds things because the normal meds given to raise the b/p cannot of course be given - it's so crazy complicated to me -- but I'm new to all this. And wearing CPAP -- which will be the hugest motivator in the world to attain a normal weight in hopes of curing my mild apnea...I'm claustrophobic.

I would have never been able to appreciate the gifts and talents of my autonomic neuro physician or even heard of him for that matter if it weren't for the sharing of the people here. Upon reading the recommendations I made a lot of things happen in order to see him because I knew these superb clinicians that actually have a great interest in humanity with these sorts of maladies are few and far between. Now I can claim my sanity......... Now I can smile for a bit at the cocky neuro seen elsewhere that said to get counseling because 'it's been known to help fatigue' - and smile even broader for the next even cockier neuro who said I had to prove I wasn't psychiatrically challenged because of what the first guy wrote... Good grief.

I'm in utter awe of the goodness that's surrounded me since I met the people here on dinet.... May blessings unfold and manifest for you as well!!!

[skiberthoud]

Thank you, Nowwhat! I appreciate you sharing that with me!