Need Advise On Development Of Symptoms

[avidita]

Hello Everyone!

It's been a long time since my last post. I was on my way to Europe for some tests. Basically, they ruled out anything autoimmune going on and re-confirmed my POTS with a new TTT, 24hr blood pressure and heart rate holter. On my way out of a d-r's appointment, I had severe chest pain and was rushed to the ER with suspected pneumothorax, which was never confirmed, since my X-rays came out clear. I was kept in the hospital for 3 days for observation. I was very stressed and in the middle of all this started getting body jerks when trying to relax and sleep. I literally moved the hospital bed. A few days later, started getting muscle twitches all over my body when I am awake, too. 2 EEGs came back normal.....so, they put me on Lexapro 10mg and my symptoms were improving A LOT for the past 7 months. I still have the twitches and the dizziness and all that, but it's not life limiting at this point. I worked out 2-3 hours a day and am working full time.

BUT, I've noticed my pulse has been going slow sometimes. I am in good shape, so a 50 resting pulse is not that abnormal, but sometimes it stays at 60 when sitting and even standing up. I don't know what that is about. I got insurance in the US and spent last week in the Alabama MVPS center and doing tests with D-r Zia in KY. Alabama went OK. But, when D-r Zia performed the 30 minute TTT in his office, I blacked out on the 15th minute with a sudden BP drop to 50/25 (Pulse 125). That has NEVER happened before. I've monitored my BP and pulse for the past 1.5 years and I know that my BP has been low (90/60), but stable. I even did a 30 minute active TTT last year and it never plummeted. D-r Zia spent literally 10 minutes with me (I taped it, so I know) to tell me I don't have POTS, but autonomic dysfunction. I tried to ask questions, but he waved me off and left. I am VERY upset. For a D-r who specialized in autonomic disorders in Harvard, he should be able to do more than interpret a simple TTT test. I read his notes afterwards and it reads: "Prolonged tilt-table testing resulted in a vasodepressor response. The tilt-table test was terminated after 15 minutes due to blood pressure of 50/25 mmHg with a pulse of 125 beats per minute and patient's symptoms. Vasodepressor response with an inadequate compensatory tachycardia, as seen during the autonomic testing, is likely to explain symptoms of orthostatic intolerance. The findings are consistent with autonomic dysfunction." Anyway. I am left with the following questions if anyone here is willing to take a stab at them, I will be extremely grateful:

1. Does the BP drop on this TTT mean that my POTS has progressed into pure autonomic failure? Is that the same as autonomic dysfunction? (note: I did spent the previous two days driving for 10 hours a day if that makes a difference for the BP drop)

2. Is my pulse hoovering around 60 when I am sitting and 65 when staying upright mean that I am getting better or that it is no longer compensating for the low blood pressure?

3. What does he mean by "inadequate compensatory tachycardia"? I understand that my pulse obviously didn't compensate for the blood pressure drop, but on TTT it always gets to 110-120 from about 50-70 and just stays there....The day before this TTT, I had another 10minute one in Alabama and they said my pulse didn't go up that much....so what, now I am not tachycardic enough?

4. It's been 3 years since my onset of symptoms and 1.5 years since it got worse after a surgery. Does this mean that It will progress and it will not improve? I've read that it should clear in 2-5 years, and mine has worsened, so I am assuming the worst....

5. Do my muscle jerks and twitches mean I have something more than dysautonomia and what could it possibly be?

I am also getting checked for MS and Mito, though my 2 MRIs have come back normal. I am so mad at the medical profession right now. I feel that they've let me down. One can't just through a diagnosis like that at someone and leave the room. What I am supposed to do? Google my treatment and prognosis?

Anyway. Thanks again in advance to anyone who can shed any light in my little tunnel.

[sue1234]

Ooooooh, we have had our time lately with the medical profession! There have been a few of us lately complaining about how doctors don't really get into the diagnosis, just perform tests. I beginning to think alot of them are in certain medical areas for the testing $$$$$$ they get from insurance, and then don't have to follow-up or work with the patient afterwards. All the testing in the world means nothing if they are not going to follow through with care. I am sorry you had to do all that traveling to be so disappointed.

Can I ask how you ended up with one appt. in Alabama, and then on up to KY?

[juliegee]

Hello Everyone!

It's been a long time since my last post. I was on my way to Europe for some tests. Basically, they ruled out anything autoimmune going on and re-confirmed my POTS with a new TTT, 24hr blood pressure and heart rate holter. On my way out of a d-r's appointment, I had severe chest pain and was rushed to the ER with suspected pneumothorax, which was never confirmed, since my X-rays came out clear. I was kept in the hospital for 3 days for observation. I was very stressed and in the middle of all this started getting body jerks when trying to relax and sleep. I literally moved the hospital bed. A few days later, started getting muscle twitches all over my body when I am awake, too. 2 EEGs came back normal.....so, they put me on Lexapro 10mg and my symptoms were improving A LOT for the past 7 months. I still have the twitches and the dizziness and all that, but it's not life limiting at this point. I worked out 2-3 hours a day and am working full time.

BUT, I've noticed my pulse has been going slow sometimes. I am in good shape, so a 50 resting pulse is not that abnormal, but sometimes it stays at 60 when sitting and even standing up. I don't know what that is about. I got insurance in the US and spent last week in the Alabama MVPS center and doing tests with D-r Zia in KY. Alabama went OK. But, when D-r Zia performed the 30 minute TTT in his office, I blacked out on the 15th minute with a sudden BP drop to 50/25 (Pulse 125). That has NEVER happened before. I've monitored my BP and pulse for the past 1.5 years and I know that my BP has been low (90/60), but stable. I even did a 30 minute active TTT last year and it never plummeted. D-r Zia spent literally 10 minutes with me (I taped it, so I know) to tell me I don't have POTS, but autonomic dysfunction. I tried to ask questions, but he waved me off and left. I am VERY upset. For a D-r who specialized in autonomic disorders in Harvard, he should be able to do more than interpret a simple TTT test. I read his notes afterwards and it reads: "Prolonged tilt-table testing resulted in a vasodepressor response. The tilt-table test was terminated after 15 minutes due to blood pressure of 50/25 mmHg with a pulse of 125 beats per minute and patient's symptoms. Vasodepressor response with an inadequate compensatory tachycardia, as seen during the autonomic testing, is likely to explain symptoms of orthostatic intolerance. The findings are consistent with autonomic dysfunction." Anyway. I am left with the following questions if anyone here is willing to take a stab at them, I will be extremely grateful:

1. Does the BP drop on this TTT mean that my POTS has progressed into pure autonomic failure? Is that the same as autonomic dysfunction? (note: I did spent the previous two days driving for 10 hours a day if that makes a difference for the BP drop)

2. Is my pulse hoovering around 60 when I am sitting and 65 when staying upright mean that I am getting better or that it is no longer compensating for the low blood pressure?

3. What does he mean by "inadequate compensatory tachycardia"? I understand that my pulse obviously didn't compensate for the blood pressure drop, but on TTT it always gets to 110-120 from about 50-70 and just stays there....The day before this TTT, I had another 10minute one in Alabama and they said my pulse didn't go up that much....so what, now I am not tachycardic enough?

4. It's been 3 years since my onset of symptoms and 1.5 years since it got worse after a surgery. Does this mean that It will progress and it will not improve? I've read that it should clear in 2-5 years, and mine has worsened, so I am assuming the worst....

5. Do my muscle jerks and twitches mean I have something more than dysautonomia and what could it possibly be?

I am also getting checked for MS and Mito, though my 2 MRIs have come back normal. I am so mad at the medical profession right now. I feel that they've let me down. One can't just through a diagnosis like that at someone and leave the room. What I am supposed to do? Google my treatment and prognosis?

Anyway. Thanks again in advance to anyone who can shed any light in my little tunnel.

Avidita-

I'll take a stab:

1. NO. "Autonomic Dysfunction" is an umbrella term encompassing: POTS (Postural Orthostatic Tachycardia) , NMH (Neurally Mediated Hypotension), VVS (Vasovagal Syndrome), NCS (Neurocardiogenic Syncope), etc.

2. Could mean either. What's your BP doing when your upright pulse is 65?

3. Inadequate compensatory tachycardia simply means that your HR wasn't fast enough to maintain your BP to keep you from fainting. I'm a little confused. Early in your post you say that your HR stays at 65 when you are upright. Later you sat it goes up 50-60 BPM when you stand. Maybe the latter is what it used to do (?) Your TTT is consistent with NMH or NCS. That's what my son was DXed with at Johns Hopkins. His HR did not go up substantially in the first 30 mins, but he lost measurable blood pressure at around 30 mins. His HR also exhibited "inadequate compensatory tachycardia" at that point reaching 130BPM. He is not DXed with POTS because the increase did not occur in the first 10 mins.

4. This change doesn't necessarily mean that it's progressing. It's just manifesting in a new way. The fact that you're able to exercise 2-3 hours a day & work full-time tells me it's NOT progressing...probably improving

5.I'm not sure what the muscle twitches mean. I hope others will weigh in on this as so many have twitches and tremors as well. My son was just DXed with Essential Tremor- seems to go hand-in-hand with dysautonomia. Interesting that it's improving with Lexapro- could be you were very deficient in serotonin...

How frustrating that this doc just used the umbrella term "autonomic dysfunction," rather than giving it a specific name. No wonder you are so frightened & confused. My guess is that your exercise has improved things to the point where your dysautonomia is just manifesting differently. How do you feel on a daily basis? And, out of curiosity, what kind of exercise are you doing?

Your story is proof to me that seeing more doctors & doing more tests isn't necessarily helpful. Each uses their own terminology AND our symptoms are so variable it seem impossible to get a definitive DX.

Sorry!

Hugs-

Julie

[Chaos]

I agree with Mack's mom. Seems like maybe your autonomic dysfunction may just be presenting differently. It seems like from what I've read on here and from research articles that people's symptoms can be highly variable from day to day (e.g. how high your HR might go on a given TTT).

This summer I did two TTT two days apart. The first one said I had POTS and "Delayed Accentuated Tachycardia" along with NCS. The second one didn't mention the POTS, just the NCS.

It's frustrating that there is so little consistent terminology with all this stuff which just adds to our confusion in trying to figure out what's going on with us.

I do remember last summer when I was really struggling with this illness, that I would have jerks in my body that felt like they made me levitate off the bed. Kind of like when you jerk when you're on the edge of falling asleep but about 50 times stronger. It was kind of weird. I didn't mention that symptom to the docs since they thought I was crazy already.

[avidita]

Thank you for your replies!!!!

@sue1234 My insurance allows me to see any specialist that is in the network. All the tests that I have had done so far were requested and paid by me in Europe based on my research. The Euro doctor didn't even want to perform the first TTT because he thought I had nothing and after I begged for it (on top of paying out of pocket for it), he did it and 5 minutes into it, he was telling his med students that they are now witnessing POTS . So, in Europe, I found out I had Mitral Valve Prolapse and POTS, plus I developed irregular heart beat to go with my body jerks. So, when I got my US insurance I made appointments with the MVPS center in Alabama because they are cardio specialists and with D-r Zia in KY, because he is a neurologist, thinking that I will cover all angles. In retrospect, I should have gone to Vandi. The Alabama staff is really awesome and spends A LOT of time with you, by the way. So not all doctors are jerks.

@Mack's Mom Thank you for taking the time to address my questions. Let me answers yours, too. When my upright pulse is low, my blood pressure is it's standard 90/60. I was walking around with a BP monitor at one point measuring it obsessively, so I know it hasn't plummeted before. But low upright pulse is only a recent phenomena. It would go to 80 when I walk my dog, etc, but only on occasion. Usually I am standard tachycardic: resting pulse 50-60, maybe 70 if I am REALLY stressed, 110 standing, 130 exercising at a medium intensity. I've had higher, like 130 just standing, but those, too, are episodic. On a daily basis, I have symptoms that on a 1-10 scale (10 being not able to get out of bed) are around 3-4. This has been as of this last February. before that I had a real rough patch. When I am PMS-ing, they get to about 6-7 for a few days and freak me out. I do have months where my symptoms get to 8-9 for no reason and stay bad for weeks, though. I've always been active doing all kinds of sports. Since my dysautonomia worsened 1.5 years ago, I find that I tolerate cardio much better than weight lifting, which D-r Moore in Alabama said was normal, since in weight lifting your BP and pulse have to go up and down on every set, which is harder than just getting them up for a period of time, like in cardio. The weekend after this faining TTT, I did a 12 mile kayak on one day and hours mountain biking on the other, while still symptomatic. Last year in the middle of a bad spell, I climbed a mountain. People hear that and think I am fine, but the truth is working out has rarely made my symptoms worse, it is usually studying or mental exertion that gets me and I am quite symptomatic anyways. BUT, this past November when my symptoms got so bad that I was shaking every time I attempted to even sit in bed, what helped me the most was the following regimen: I started by walking around the block once and going back to lay down. When I felt I could do it again, I did it again. I have an elliptical at home, too. So after a few days of only walking around the block as many times during the day as I could muster, I tried climbing the elliptical for 5 minutes. Then sit down and rest. Another 5 minutes in an hour or so. Basically, my day revolved around doing a little bit of exercise and then gaining strength for another round. I did the elliptical REALLY slowly, monitoring my heart rate the whole time and trying not to let it go over 130-140. In a month or so I increased the elliptical to 10 minutes several times a day and walking as much as I could. Little bouts of cardio seem to help me much better than anything else. But it requires A LOT of patience and not pushing yourself too much. Even a minute of something a few times a day adds up.

@Chaos I know what you mean. I carry a list of symptoms and decide whether I want to tell my doctor or not based on the mood he/she is in. If they are dismissive, I don't even bother. Sometimes I wonder how it is possible for people to be more informed from a few weeks researching the net than someone who has spent years in medical school.

[juliegee]

Wow, hearing about your exercise routine is very inspiring. I LOVE your persistence. I also love your determined long-term effort. I firmly believe that is what has made you as well as you are now. I know you're a long way from being "normal," but it sounds like you've come a long ways. Thank you for sharing.

Julie

[nmorgen]

Hi avidita,

I don't know what is causing the pulse drop while standing, but I had the same thing happen to me a few months back. My sitting/resting pulse dropped low and my pulse wouldn't go above about 80 after standing and walking around. My bp was pretty high at the same time and I felt really bad. I posted the symptoms on the forum, but nobody else seemed to have anything similar happen to them. Mine has resolved so far, and gone back to the normal pulse spikes while standing and walking around. Which type of POTs were you diagnosed with? I am hyperadrenergic. I also have the tremors. They vary in intensity and come and go without warning.

I was treated at UAB before I moved to Switzerland. My cardiologist was willing to work with me and suggested I go for testing at Vanderbilt. I kind of wish I had been able to go. If your insurance will cover it I would look into it. Good luck with your drs.

[avidita]

@Mack's Mom Thank you, Julie! I know we all need to hear something encouraging from time to time.

@nmorgen I have not been diagnosed with a specific type of POTS. I couldn't find anyone in Europe that could perform the supine/standing catecholamines blood test, but my blood pressure doesn't get high, so I am 90% that I don't have the hyperadrenergic type as that is a very good indicator. Like you I feel bad when my pulse is in the normal range (low for us, but 80 moving around is normal for normal people). It's too bad D-r Zia didn't bother to categorize my dysautonomia, he seemed so happy with himself that he found "autonomic dysfunction" and won't give me the record of the TTT, so I can take it to someone who can go beyond a Dx that I can find on Google )))))) I strongly feel that once an autonomic disorder is found, doctors need to dig deeper to find the underlying issue. For example, I spent quite a bit of time on this forum last November, getting increasingly depressed from the stories of people getting worse. BUT, there are those with underlying mitochondrial disease (not curable at the moment), those with thyroid issues, those with EDS, those with viral onset, etc. While we all have POTS, it is not wise to base one person's outcome on comparing them with someone who has a completely different underlying issue.

[nmorgen]

@nmorgen I have not been diagnosed with a specific type of POTS. I couldn't find anyone in Europe that could perform the supine/standing catecholamines blood test, but my blood pressure doesn't get high, so I am 90% that I don't have the hyperadrenergic type as that is a very good indicator. Like you I feel bad when my pulse is in the normal range (low for us, but 80 moving around is normal for normal people). It's too bad D-r Zia didn't bother to categorize my dysautonomia, he seemed so happy with himself that he found "autonomic dysfunction" and won't give me the record of the TTT, so I can take it to someone who can go beyond a Dx that I can find on Google )))))) I strongly feel that once an autonomic disorder is found, doctors need to dig deeper to find the underlying issue. For example, I spent quite a bit of time on this forum last November, getting increasingly depressed from the stories of people getting worse. BUT, there are those with underlying mitochondrial disease (not curable at the moment), those with thyroid issues, those with EDS, those with viral onset, etc. While we all have POTS, it is not wise to base one person's outcome on comparing them with someone who has a completely different underlying issue.

You know I had the same problem when I joined in 2008. I hadn't been diagnosed yet, but they said that I was symptomatic from my neuro TTT or poor man's TTT. My login was different, I was naltiner then. I just couldn't bring myself to get back on the forum it was so depressing to me. I came back this past year and felt a lot better about reading the forum. I couldn't remember my old password and by then I had changed email addresses. I agree that most people have a lot more going on than just the POTs. I have read that the hyper POTs can be genetic, and I have noticed symptoms in my oldest son. He gets really dizzy and has to lay down on the grass if he plays too hard or does anything on the monkey bars. He is now salt loading and drinking lots of water and it seems to help. I just wish there was more funding for POTs, so that we could find out what was going on.

I definitely think it's sad that they hand you a diagnosis, but have no real clue how to really help.

I do think it's interesting that we had the same symptoms. Your the first person on dinet that has experienced the same thing as I have. I was thinking when it happened that maybe the POTs had just gone away, but I felt really bad at the same time. My pulse stayed really low for about a month. It wasn't that it was just low, but it would only go up about 15 b/m after standing, walking and everyday activities. My pulse was completely normal. My bp was a little high. Here is an excerpt from my original post:

I was wondering if anyone else has had a drastic drop in their pulse, but high blood pressure. The past 2 weeks I haven't been feeling very well. My pulse has dropped into the seventies while standing, but my blood pressure has been high and variable ranging from 150/105 to 119/88. I've been having headaches for the past 2 weeks, I'm sure they are caused by the blood pressure. My hands also turn bright red and swell.