So, Do I Have Dysautonomia?

[bigtrouble]

So, do I have dysautonomia?
I think so.
Hello everyone, I'm new here.
I'm a guy, 38. The problem started 3 years ago. I'm in my 4th year.

1. It started with a weird feeling in my chest. Then one day, I get tachycardia. Up to 120 bpm. Yes, I realize this doesn't compare with people who have IST (200 bpm and more).
2. While seated, it was 92 to 97 bpm and it felt really uncomfortable back then (year 2012).
3. Heart pounding. Visible just by looking at shirt.
4. Dizziness, lightheadedness, difficulty to think.
5. Another major symptom is nausea. Sometimes, it feels like a tennis ball is stuck in your throat.
6. I use to get migraines once a year. It is 3 times now.
7. I get chest vibrations. I don't know what this is : muscles? They are very rapid vibrations, like a cellphone. They last 1 second.
8. Some kind of weird feeling in my chest. I can only describe it as electrified. It is like I'm shaking but I am not actually shaking. Sorry, I'm not really good at describing symptoms.
9. I also have poor circulation. Hands get red if they are down. I can see some white spots. I had this since I was a teen but they went away but now it is back. Very weird.
10. Blood pressure is fine, so I don't have POTS. Blood tests are normal.
11. Major chest pain at times. It feels like veins are squeezing. I can feel the blood pumping through on my chest side and in my back. This might be due to the heart pumping hard.

I can say that my symptoms have improved since 2012/2013. It use to be continuous. My favorite time in my life was sleeping.

[Katybug]

Hi,

A few thoughts for you:

1) It sounds enough like dysautonomia that you should probably try to see a doctor. Have you been to the doctor and if so, what type of doctor have you seen? It sounds like you should definitely be seeing a Cardiologist, at a minimum.

2) POTS is diagnosed by changes in your heart rate from supine to standing, not blood pressure, so your bp not changing does not rule out POTS.

3) Do your symptoms feel better when you lie down? That often is another indicator of some sort of orthostatic intolerance.

Welcome to our community! I hope you find some answers and support here! Will check back later.

Katie

[BeforeTheMorning]

Hi,

It sounds like it may be a good idea for you to see a doctor who knows about dysautonomia. Here is a link to a list of doctors from the Dinet website:

http://www.dinet.org/index.php/physician-list?view=physicians

Of course that list is not exhaustive, but it may have one near you.

You can do a 'Poor Man's Tilt Test' either at home or get your PCP to do it. You lie down flat and still for about ten minutes, and measure your heart rate and blood pressure, the stand up and stand still. Measure your HR and BP at 3, 5 and 10 minutes.

About the nausea. That is a big one for me too. A few years ago it was really bad and I also had something similar to what you are describing, the 'tennis ball stuck in throat' feeling. One thing which I think helped me at the time was stopping having dairy products. Maybe you could try that. It seemed to help me at the time.

Nowadays I get nausea even if I don't eat dairy, but if I do it makes it worse.

Anyway, the main thing is to see a knowledgeable doctor who will hopefully be able to help you.

All The Best.

[plaster89]

Hi,

For the beginning I would propose to simply lie down for 10-15 minutes at least and measure your blood pressure and heart rate two or three times. Make sure you aren't doing it after physical activitity or during major emotional stress. It can give a false verdict. You can do it in the morning for example. Then stand up from supine position and measure your pulse immediately. Notice a difference. If your heart rate will be 30+ bpm higher than it was when your were laying there is a very good possibility you have POTS. Stay motionless and not do lean on anything for about five mnutes and measure again and repeat it after another 5 minutes. Stop when you feel bad.

Even if you do not achieve 30 beats increase that's not excluding pots. The bigger difference the better possibility of you having POTS. Blood pressure has nothing to do with POTS really. It is orthostatic hypotension, which is different type from POTS, that characterise in decrease in blood pressure when standing.

[bigtrouble]

I was able to see a cardiologist in 2013, but unfortunately, he was dismissive and thought it is psychological. I've heard that story a bunch of times from other dysautonomia sufferers. He told me to not to think about it.
The heart pounding was quite bad and I was wondering if it might be mitral valve prolapse. An echocardiogram was finaly done. All normal.

@Katbug: "3) Do your symptoms feel better when you lie down?"
==Not right away. It can take 30 min.

@BeforeTheMorning : I'm not sure how I can find a doctor in Canada. It would have to be in the Montreal area. I'll try to cut out milk (I drink a lot of it).

@plaster89: I'll give it a try.

If only I had a solution for symtom number #8. That one is a killer.

Thanks everyone.

[Katybug]

Hi bigtrouble,

There are some doctors in Canada on our physicians list. You can do a search by country. That should narrow down the list enough for you to see what your options are.

http://dinet.org/index.php/physician-list?view=physicians

My symptoms often take a half hour or more to resolve when I lay down. It depends on how bad I let it get before I lay down.

Hang in there. It often takes time to find the right doctors.

[bigtrouble]

Hi,

For the beginning I would propose to simply lie down for 10-15 minutes at least and measure your blood pressure and heart rate two or three times. Make sure you aren't doing it after physical activitity or during major emotional stress. It can give a false verdict. You can do it in the morning for example. Then stand up from supine position and measure your pulse immediately. Notice a difference. If your heart rate will be 30+ bpm higher than it was when your were laying there is a very good possibility you have POTS. Stay motionless and not do lean on anything for about five mnutes and measure again and repeat it after another 5 minutes. Stop when you feel bad.

Even if you do not achieve 30 beats increase that's not excluding pots. The bigger difference the better possibility of you having POTS. Blood pressure has nothing to do with POTS really. It is orthostatic hypotension, which is different type from POTS, that characterise in decrease in blood pressure when standing.

I don't have any means to measure blood pressure in my house, but I measure the heart rate. There isn't a big change between being in bed and getting up. I tried it in the morning and afternoon.

[plaster89]

Do you have dilated pupils or elevated body temperature?

[bigtrouble]

What part of the body do you mean? My hands tend to be cold because of poor circulation.

That was #9 (hands get red when down). Some other people have mentioned but I don't think all dysautonomia suffers have this.

Yes, I've had dilated pupils since I was a teen. Everyone mentioned it from back then until now.

1 year ago, I found out that it has a name = mydriasis

Some symptoms are ultra rare. A couple of times I started to sweat exceedingly for 10 min. My entire body from head to toe was wet. It was like someone opened a valve for sweat glands for 10 min. (15 sept, 2014. It happened 2 times in the same day)

From my documentation:

June 06, 2013 : sudden sweating. Forehead wet.

June 07, 2014: Heart thumps once, Felt weird and sudden sweating. Forehead wet.

[Katybug]

Hi bigtrouble,

The excessive sweating is quite common with dysautonomia patients, as is the exact opposite, Hypohydrosis (lack of sweating.) I suffer from excessive sweating and sometimes just brushing my teeth will result in having to change my clothes due to the sweating.

Temperature dysregulatation is also a problem that can be either low grade fevers or low temp. For example, my temp used to be normal. Since developing dysautonomia, my temp is usually around 97.1.

Pooling of blood in the hands is also not uncommon for POTS patients.

[plaster89]

What part of the body do you mean? My hands tend to be cold because of poor circulation.

That was #9 (hands get red when down). Some other people have mentioned but I don't think all dysautonomia suffers have this.

Yes, I've had dilated pupils since I was a teen. Everyone mentioned it from back then until now.

1 year ago, I found out that it has a name = mydriasis

Some symptoms are ultra rare. A couple of times I started to sweat exceedingly for 10 min. My entire body from head to toe was wet. It was like someone opened a valve for sweat glands for 10 min. (15 sept, 2014. It happened 2 times in the same day)

From my documentation:

June 06, 2013 : sudden sweating. Forehead wet.

June 07, 2014: Heart thumps once, Felt weird and sudden sweating. Forehead wet.

Have you been to a doctor apart from that cardiologist's visit? It's very often that dysautonomia patients are dismissed and hear it's all in your head. Many symptoms overlap with anxiety so it's even harder to distinguish what is what. Mitral valve prolapse is not absolute indicator of having dysautonomia, although it's very much possible to have both. But since you have had it ruled out then you shouldn't worry about that.

Dilated pupils are not common. Unless you are taking SSRI/SNRI-like drugs or have had some kind of neurological disorder it might be dysautonomia symptom. Red hands when standing are very common as well and it's a clear autonomic dysfunction. But the thing that baffles me is you have normal HR and BP and these symptoms you have had in teen years and they are back. It's very much possible you have some type of dysautonomia, it's pretty much impossible to get these symptoms from anxiety. But since your HR and BP are stable it can be something other than POTS.

[bigtrouble]

Have you been to a doctor apart from that cardiologist's visit?

The simple answer is no.

The way it works in Canada is that you have to go to a clinic. They have general doctors who then refer you to a specialist. That was difficult to get. After that, I got the echocardiogram since I talked about the heart pounding since that is a symptom of mitral valve prolapse. I would say that it is an important test. Not sure why there was so much resistance on their part.

Yes, during my searches on the Internet, I found out about Innapropriate Sinus Tachycardia and POTS. A lot of people were mentioning that the doctors think that they have anxiety, which is what I was getting as well. I said to one of the doctors that my heart rate goes up just by going DOWN the stairs. Then I have to relax a bit. Then I can go back up. Too bad there isn't a machine that let's one person connect to the brain of someone else and see what the person is sensing.

[SarahA33]

Hi Bigtrouble,

Sorry to hear that you've had such a hard time getting a referral... not sure if you got the cardio referral or not at this point, but maybe your primary could order a holter monitor for a week or so. I had a 30 day, which is how I was diagnosed with POTS and IST. My heart rate took off in my sleep, just sitting down, pulsations in my neck, etc, which my electrophysiologist diagnosed as IST. Also, it showed the orthostatic inclines as well, and pots was also reconfirmed with the monitor and various tests. The results may nudge your primary along to get you to a specialist sooner? How far are you from Calgary.. there is a POTS specialist who was from Vanderbilt who just went there.

I am exercising much more now that I've started on Ivabradine, which has worked wonders for me. However, I still cant make it up an entire flight of stairs (which is 12 steps). I think stairs are difficult for a lot of us, unfortunately! I wish you the best of luck! Sarah

[bigtrouble]

Hello SarahA33,

In reality, we should all have a family doctor but there is a huge shortage. That's someone who does follow ups and refers you to specialists. Some of them are retiring and no one replaces them.

I thought the heart rate went down for IST patients when they sleep. In some cases, it goes down to normal.

I know what you mean by pulsation in my neck. I use to see it in the mirror and also felt it. For me, it is complicated since I no longer get high heart rates. It usually hovers around 80 bpm. Instead, I get heart pounding plus the other symptoms like a lot of chest pain, vibrations (muscle spasms in chest?), strong nausea, and that #8. Today was another such nasty day from 10 AM to 12 PM.

Calgary is quite far.

How come you don't take a beta blocker? What is your dosage?

[lfreem02]

Where in Canada do you live? I am from Ontario, and have three brothers who still live there. I live in Atlanta now. So, I understand the frustration of the healthcare system there.

I was diagnosed with Dysautonomia, not POTS. My body produces too much adrenaline, so I have the pounding heart even with taking a beta blocker. I can't eat/drink caffeine, which includes chocolate. I understand what you mean about sleeping being the best part of your life. When a lie down, my body can finally rest. I can sleep for eight hours at night, and still take a four hour nap the next day. The different doctors I started seeing three years ago all knew there was something going on with my autonomic nervous system, but I didn't fit neatly in the POTS diagnosis box, so I was given the incorrect medications. I had to go out of state to see a group that specializes in MVP and Dysautonomia. They finally got me on the right medications, and explained that this disorder can very greatly from person to person.

[bigtrouble]

In Montreal.

It is a good idea to check adrenaline (epinephrine). I looked at the form they have and it isn't even on the list. It is one of those forms where the doctor puts check marks next to the items.

I had total cholesterol, cholesterol HDL, triglycerides, uric acid, ALT (GPT), creatine, Na, K, Cl, alkaline phosphatase, TSH, blood formula with difference.

You should try bisoprolol for the pounding heart.

[SarahA33]

Hi Big trouble,

Here is a great website that I have used for years when looking up labs that my doctors have given me: https://labtestsonline.org/ This is my go to place if I wonder why/what they ordered something

unfortunate that Calgary is so far away, however there are other great doctors out there who can help you, don't lose hope! I found a couple of names in the Montreal Area: Dr. John Stewart and Dr. Jean Cusson PhD. They treat autonomic conditions.

To answer your question, I've been on a lot of medications ( Metoprolol, Lebetalol, Cardizem, Bisoprolol, Verapamil, Lisinopril, amlopdipine, Clonidine pill, Catapress patch). My current EP/POTS doc at the CC recommended the Ivabradine as it actually works directly on the sinus node. By no means am I fixed or cured, but I'm heading in the right direction with his help, Ive not had heart rates these low in like 7 years.. Since I was on such a high BB dosage I'm now trying to reset my beta-receptors by lowering my doses.

Your right Bigtrouble, IST rates do tend to drop while sleeping in some people, I even had a few nights where I went into low 100's, and 60's, But, there are also patients that can incline and spike as well. I'm trying to remember a conversation with my doctor from almost a year ago, so forgive me, but I'm certain he told me the defining criteria for IST 100bpm+ at rest and exerts to higher numbers w/ minimum exertion. That could explain your stair dilemma... I couldn't even put my own compression stockings on at one point many years ago. We all have to start somewhere, and despite it being a long road, now that you've found the forum, hopefully we can help you navigate

Here's a link on POTS/IST overlap: http://content.onlinejacc.org/article.aspx?articleid=1486711

Good luck to you, Sarah

[Nymph]

Hi Big Trouble,

I have all the same symptoms as you. My cardiologist said I ahve POTS. However, my hear rate does not spike immediately upon standing. It takes about 10 min to reach that 30 bpm increase. I am by no means an expert at this and even within POTS there seems to be a huge range of variation as to how the body responds. I just wanted to tell you that I have all of those symptoms and I know how horrible that internal feeling is.

Nicole

[Nymph]

Sarah, thanks for the info on IST. I had not heard of that.

[SarahA33]

Welcome Nicole, how are you feeling? Did you at least get the summer off from school?

[Nymph]

Thanks, Sarah. I have had a Sjogren's flare since May, but it is slowly on its way out and I am feeling good most days. POTS is bothering me more in the summer than it was in the spring. The heat I guess. Thanks for asking.

How are you? Still on that new med you were trying? How is it working?