Who has autonomic dysfunction?

[anciendaze]

The standard assumption by doctors is generally anxiety->tachycardia and dyspnea, which is possible. However, there should be no question that unexplained tachycardia and dyspnea will cause anxiety. So, we also have tachycardia->anxiety and dyspnea->anxiety, (if not panic.)

When there was an error in medication once I spent a couple of hours wondering if my heart would hold together while it beat at close to 160 beats per minute. Eventually the overdose wore off without medical intervention.

I definitely did have anxiety, but that was not the cause of the problem.

Finding anxiety, or even a "crazy" patient, should not be the end of the process. I've seen full-scale psychotic episodes triggered by physical causes, like anaphylaxis, which had nothing to do with the patient's prior sanity. As a survivor of the 1960s, I also saw many people who temporarily met all the requirements for a diagnosis of mania or schizophrenia as a result of drugs they had taken. Some of them never came back from other planes of existence after they turned-on, tuned-in and dropped-out, but a surprising number now hold very respectable positions. (This is not to say that I recommend this approach to enlightenment. I was careful to avoid such when I was young, and I think the differences in results are apparent in my thinking today.)

One other thing, even while they were off on excursions to alternate planes of existence ordinary lab tests usually didn't show anything useful, in those cases where it was possible to run tests. (It is hard to run thorough tests on a patient hiding from aerial bombardment under a car in the parking lot.)

As a result of this experience I became rather skeptical about most cases of "functional" psychiatric illnesses. I suspect we simply aren't testing for the right things. I've known patients with bipolar disorder (manic-depressive), who change back and forth almost like clockwork. The strange thing is that even with this going on, and in a fairly predictable manner, we still can't tell what is chemically different between the phases of the illness. There is no shortage of subjects for research.

This is a problem with the current state of the art, and it is unreasonable to expect the whole profession to change to accommodate you. Do your best to keep things moving forward without claiming to know what is going on, (nobody else does,) or getting classified as unreasonable and/or crazy. Do not expect instant answers.

 

[CFS_for_19_years]

I have learned that doctors like charts 'n' stuff. I wonder what would happen if you kept a symptom diary that included the date and time you have tachycardia, what your heart rate was, and what you were doing at the time.

If you conduct your visit like a business meeting, and say, "I want someone to tell me why I have tachycardia and I want it to be treated" or "My sinuses hurt (add some history) and I want them to stop hurting" then doctors know exactly what you want. You can even print it out for them if you think you'll get flustered. Even if you don't get flustered, handing it to them on paper gives them something they can focus on. You can add a summary of your symptom diary.

I had a two-hour visit with a doctor at my home. He was somber throughout the time when he was asking questions. His whole face lit up and demeanor changed when I showed him two things: the medication chart that I keep and my new toy, a pulse oximeter. I don't even need the pulse oximeter. I think some doctors like things that are very concrete and the things I mentioned in the above paragraphs help them focus a bit more.

 

[Sushi]

I have learned that doctors like charts 'n' stuff. I wonder what would happen if you kept a symptom diary that included the date and time you have tachycardia, what your heart rate was, and what you were doing at the time.

Or even bring an electronic record like a BP monitor with memory that he can scroll through to see your HR. Maybe pulse oximeters have memories too?

 

[CFS_for_19_years]

Or even bring an electronic record like a BP monitor with memory that he can scroll through to see your HR. Maybe pulse oximeters have memories too?

Then the doctor could order a 24-hr Holter monitor if the thought hadn't occurred to him before.

 

[Kenjie]

Then the doctor could order a 24-hr Holter monitor if the thought hadn't occurred to him before.

this particular doctor didn't see a any further suggestions necessary or relevant. I was very clear in what I wanted today but he said no...

Well now this gets interesting...

I didn't give up today...so I went to my local health centre today instead after my unsatisfactory doctor consult today.. I wasn't backing down....so I went my health centre... and asked them to please check up my nose...guess what 5 months later it is still red and inflamed!

Then I asked them to swab my nose... they did....and asked them to swab for strep and thrush down below which they did! ANNNNNND the nurse accepted my paper blood work for antithyroglobulin and IS sending on to ENDOCRINOLOGIST!! I asked to be sent privately my request was accepted.

See I know something is going on. I don't know what but definitely been a myriad or things. All that is left is mri if and when necessary but after I see an ENT to put camera put up my nose.

I am not crazy! Lol. I feel more satisfied with the health centre today.. they listened and accepted my requests.

Now i just wait For swab results and appointments. i managed to get a sooner appointment than end jube for ENT for mid may instead. Ophthalmologist is 3rd week of may Re enlarged blood vessels in eyes. I'd previously from other doctor been reffered onto Neuro at hospital but that doesn't happen for 3-4 months anyway. ..not sure if that's even necessary now ...

So you can see my body has been well out of whack!

 

[TigerLilea]

He saw no need to see endocrinologist in regards to my High antibodies telling me matter of factly 'but your thyroid levels are normal'.. I said I've read that even with normal tsh levels that antibodies can still cause symptoms and he still saw no point seeing an endocrinologist.

Here in BC, Canada, if TSH levels come back normal they won't do anymore testing and an Endocrinologist will not see us. I know how frustrating that can be. As far as they are concerned everything is good.

He wrote up on the computer in regards to Friday night racy heart waking me up 'seems like panic attack'... but no mention of that I was initially asleep when we are most relaxed.

Unfortunately it is possible to wake up in the night with panic attacks and anxiety attacks. I went through this myself many years ago. It turned out for me that I was caffeine sensitive and it was the coffee that I was drinking by the boat load that was causing this. I've met many women who as they are going through peri/menopause also get woken up at night because of panic and anxiety attacks due to fluctuating hormones. So, yes, unfortunately, it is possible to have panic attacks while you are sleeping.

 

[TigerLilea]

"My sinuses hurt (add some history) and I want them to stop hurting" then doctors know exactly what you want.

I've wanted my sinuses to stop hurting for the past 26 years. Unfortunately sinus issues are one of the hardest to cure. I've seen six ENTs, had six CT scans, they can see that I have swollen sinuses, but as of yet they don't know why.

 

[Kenjie]

Here in BC, Canada, if TSH levels come back normal they won't do anymore testing and an Endocrinologist will not see us. I know how frustrating that can be. As far as they are concerned everything is good.


Unfortunately it is possible to wake up in the night with panic attacks and anxiety attacks. I went through this myself many years ago. It turned out for me that I was caffeine sensitive and it was the coffee that I was drinking by the boat load that was causing this. I've met many women who as they are going through peri/menopause also get woken up at night because of panic and anxiety attacks due to fluctuating hormones. So, yes, unfortunately, it is possible to have panic attacks while you are sleeping.

I certainly don't disagree but I woke up startled by noises...i don't normally get like that waking up. Fair enough if it is part anxiety though... i just disagree with doctors trying to pin it all on anxiety.

 

[Kenjie]

I've wanted my sinuses to stop hurting for the past 26 years. Unfortunately sinus issues are one of the hardest to cure. I've seen six ENTs, had six CT scans, they can see that I have swollen sinuses, but as of yet they don't know why.

Yep... back in 2014 I was very ill... similar to now and it was a full one year of doctor visits before anyone told me I'd had chronic sinusitis. I made official complaints against 3 GP's and 1 hospital E.D at the time. My complaints were extremely valid.

Every time I ask a doctor about my sinus they don't bother to check. So I know what you mean.

 

[Sushi]

I've wanted my sinuses to stop hurting for the past 26 years. Unfortunately sinus issues are one of the hardest to cure.

All that is left is mri if and when necessary but after I see an ENT to put camera put up my nose.

I've also had decades of sinus problems. A few years ago my doctor gave my a prescription for rifaximin for a gut infection. Presto--my sinus problems disappeared. They started getting bad again recently so I took another course of rifaximin and again my sinuses cleared up. For some of us there seems to be a connection between the gut and the sinuses.

 

[Kenjie]

I've also had decades of sinus problems. A few years ago my doctor gave my a prescription for rifaximin for a gut infection. Presto--my sinus problems disappeared. They started getting bad again recently so I took another course of rifaximin and again my sinuses cleared up. For some of us there seems to be a connection between the gut and the sinuses.

That sounds excellent. First time I've heard of refaximin. What is it.. is it a steroid or type of anti histamine?

Is a prescription necessary?

 

[Sushi]

First time I've heard of refaximin. What is it.. is it a steroid or type of anti histamine?
Is a prescription necessary?

It is an antibiotic that only affects the gut, and yes it needs a prescription: https://medlineplus.gov/druginfo/meds/a604027.html

Some ME/CFS doctors prescribe it when they find bacterial overgrowths in the gut.

 

[Kenjie]

I wish that would help with my nausea and queasy gut lol

 

[Sushi]

I wish that would help with my nausea and queasy gut lol

Have you had the bacteria in your gut checked? Who knows, it could help. The autonomic nervous system, the gut and the sinuses all seem interlinked.

 

[Valentijn]

The standard assumption by doctors is generally anxiety->tachycardia and dyspnea, which is possible. However, there should be no question that unexplained tachycardia and dyspnea will cause anxiety. So, we also have tachycardia->anxiety and dyspnea->anxiety, (if not panic.)

And then it's also a good idea to determine if the actual emotion/mental state of anxiety is present. Many doctors skip this step, and label autonomic symptoms as anxiety when the patient was not anxious at all.

Or even bring an electronic record like a BP monitor with memory that he can scroll through to see your HR. Maybe pulse oximeters have memories too?

I just ordered a pulse oximeter (the Pulox PO-300) which can record for 24 hours and be uploaded to a computer via USB. I'm a little curious to see what happens overnight, since I tend to turn over a bit for comfort reasons, but get lower oxygen levels after 15 minutes in the wrong position. It's made in China, but has a German distributor and the technical specs for error ranges look very good. There's probably similar products available outside of Europe, and the price is pretty reasonable at 79 euros.

Unfortunately it is possible to wake up in the night with panic attacks and anxiety attacks. I went through this myself many years ago. It turned out for me that I was caffeine sensitive and it was the coffee that I was drinking by the boat load that was causing this.

I have trouble with something being labeled as a "panic" or "anxiety" attack if it isn't caused by panic or anxiety.

 

[anciendaze]

@Kenjie

At this point I'm confused about how long the problem with the sinus has been going on. Your comments about a bout with infectious disease seemed to go back farther.

I mentioned an MRI because it did not seem that the sinus in question was easily accessible. (You, as a medical layperson, did not give a specific name to the infected sinus.) If they can get swabs and cameras to check, then that is a more satisfactory alternative. What I'm hearing now is that nobody actually checked that they had cured the problem by treatment with common antibiotics.

If, as I suspect, this infection has been there for some time, and been repeatedly treated with the same antibiotics, there is another possibility to consider. It is now quite likely the infection has become resistant to the antibiotics with which it has been treated. Treatment has selectively removed non-resistant strains. This may not show up when they culture bacteria from that swab because some percentage of the remaining bacteria will always be non-resistant.

Typically, resistant bacteria do not outnumber non-resistant ones because the genetic changes that make them resistant also make them slower to replicate under conditions that favor normal bacteria. Only when the more common wild-type bacteria are killed off can the resistant bacteria dominate a culture. In fact it is difficult to culture resistant bacteria, because these only thrive under unusual conditions.

If the infected sinus has been draining while you sleep, that would account for some of the other weird aspects of your case. This presents a danger because it is possible to establish an infection in the lungs of bacteria not normally found there, and even resistant bacteria. In extreme cases it can be life-threatening. (Unfortunately, I've seen cases created by bureaucratic medicine in exactly the way I outlined above.)

I don't know that this is going on right now. I'm still uncertain about important aspects of your case history.

 

[Kenjie]

@Kenjie

At this point I'm confused about how long the problem with the sinus has been going on. Your comments about a bout with infectious disease seemed to go back farther.

I mentioned an MRI because it did not seem that the sinus in question was easily accessible. (You, as a medical layperson, did not give a specific name to the infected sinus.) If they can get swabs and cameras to check, then that is a more satisfactory alternative. What I'm hearing now is that nobody actually checked that they had cured the problem by treatment with common antibiotics.

If, as I suspect, this infection has been there for some time, and been repeatedly treated with the same antibiotics, there is another possibility to consider. It is now quite likely the infection has become resistant to the antibiotics with which it has been treated. Treatment has selectively removed non-resistant strains. This may not show up when they culture bacteria from that swab because some percentage of the remaining bacteria will always be non-resistant.

Typically, resistant bacteria do not outnumber non-resistant ones because the genetic changes that make them resistant also make them slower to replicate under conditions that favor normal bacteria. Only when the more common wild-type bacteria are killed off can the resistant bacteria dominate a culture. In fact it is difficult to culture resistant bacteria, because these only thrive under unusual conditions.

If the infected sinus has been draining while you sleep, that would account for some of the other weird aspects of your case. This presents a danger because it is possible to establish an infection in the lungs of bacteria not normally found there, and even resistant bacteria. In extreme cases it can be life-threatening. (Unfortunately, I've seen cases created by bureaucratic medicine in exactly the way I outlined above.)

I don't know that this is going on right now. I'm still uncertain about important aspects of your case history.

It did feel like I had a bug in my lungs in December when all this started.

Very hard to pinpoint one thing when there has been a vast combination of symptoms.

I had past history of sinus infection but this time round I have had inflammation... pressuse in head and nose as well as frontal headaches since December. . The same time I had strep and thrush down below... couple months ago I also had thrush on my tongue.. which to me would certainly indicate some level of imbalance in my body. ..

Then when strep and thrush cleared in December after two rounds of antibiotics I'd tried an antibiotic for sinus but nothing gave any relief.. so stopped antibiotics altogether.

I was still sick and gradually worsening symotors over time after those infections cleared.

I have had swab in nose done and reswabed down below to check for any lingering signs of infection or bacteria.

I will soon see an endocrinologist for high antibodies.

And ent. And ophthalmologist re enlarged blood vessels in eyes. I aim to be thorough.

I will not be seeing anymore doctors as they cannot give me any answers.

 

[Kenjie]

And truth be told thyroid issues aside.. I may well have been making myself sick although not deliberately. .. I have had a habit of scratching left nostril for some years now to point where it would bleed and blood would hang around in back of my nose or drip down throat.

Yuck I know but a habit hard to stop. I'm trying really hard to stop now not putting finger in left nostril at all. I can understand if this leads to the continuous inflammation or any infections. I'm hoping by stopping my finger from going in my nose that I may see some improvement in time.

I'm not sure how much blood down throat is good for you. But if picking at my nostril lead to infection then I could see that making me very unwell leading to other infections viruses and bacteria and worsening of symptoms from there.

Combination of things. Hard to pimprint just one synopsis.

 

[Kenjie]

@Valentijn that's what I thought re anxiety. I'm not anxious but displayed anxiety type symptoms due to whatever making me unwell. I could tell the difference as opposed to having anxiety itself.

It appeared to be anxiety itself because I got upset in the doctors office and cried. (Out of frustration and feeling awfully sick..feeling as though I'm not getting the help from doctors that I so need).

 

[kangaSue]

I wish that would help with my nausea and queasy gut lol

Rifixamin is commonly prescribed by GI's too when it's suspected these symptoms are being caused by SIBO (bacterial overgrowth) as anyone with disturbed motility can be prone to false negatives with the Hydrogen Breath Test or Lactose/Mannitol test so yes, it could help with your gut symptoms.

Some studies show rifixamin is no better or worse for SIBO than standard antibiotics though and it's quite expensive in comparison. I often see it mentioned that better results come from combining rifixamin with metronidazole.