Who has autonomic dysfunction?

[Kenjie]

@Kenjie,

A persistent staph infection in a sinus sounds like a good reason to have multiple symptoms. You are also in the situation I was worried about concerning a possible antibiotic-resistant infection, though we won't know that for some time. I'm hoping they are not prescribing the same antibiotic that failed to clear the infection before.

If you still have an active infection, it is quite possible immune response is impairing endocrine function, so I would not expect you to go into menopause right away once the infection is cleared.

Good point. Will check which antibiotic I had in december for candida and lactobacillus down below. No antibiotics were tried for my sinus.

Ive been taking flucloxacillin 500mg 3 x per day for sinus at the moment.. i am unsure if this is enough to kill off the sinus infection or in the forehead when I believ it has persisted for 5 months.

The pressure in my head and headaches are still there.. so is the inflammation although a nurse said yesterday the inflammation is a little bit better. But the pressure in my head is still certainly there.

I have been very tired!

I was given a cream to treat the candida down below..and today i pick up a one off prescription tablet to kill it. Then i will re-swab my nose and down below next monday.

Im still not out of the woods yet. Seems like a long road to wellness.

Also woke again lastnight with a night terror. Bloody awful thing that. Like waking up to feeling of impending death.

 

[Kenjie]

Have also besn taking a Probiotic last few days although I have read antibiotics can kill it but i will keep on taking it so that it builds up in my system even til after i finish antibiotics.

Part of me feels like I should be in hospital on an iv antibiotic drip or something. I need help to get better.

I should never have been left that long to get more ill. I feel as though ive fallen through the cracks before anyone finally listened. Bacteria infections should not be left untreated for 5 months namely the sinus! Cant question down below infection as it is hard to say if it was always there or reoccurring.

Ive suffered greatly with horrendous symptoms when it could have been prevented/treated much sooner before reaching this point.

Ive made written complaints to all those ive seen that I feel brushed off by. Including the Dhb on one practice and about the hospital.

Happens all too often with far too many people.

 

[anciendaze]

...Also woke again lastnight with a night terror. Bloody awful thing that. Like waking up to feeling of impending death.

This makes me suspect either conventional sleep apnea or a "silent" form producing episodes of hypoxia at night. A recording pulse oximeter could show if this is going on. I doubt you are in shape for a regular sleep study, until the known infection is cleared, but you might be able to check on this yourself with one of those recording oximeters mentioned on this forum. I don't have a personal recommendation because I don't have one that records data. While I'm awake, and able to read it, I don't show hypoxia.

 

[Kenjie]

This makes me suspect either conventional sleep apnea or a "silent" form producing episodes of hypoxia at night. A recording pulse oximeter could show if this is going on. I doubt you are in shape for a regular sleep study, until the known infection is cleared, but you might be able to check on this yourself with one of those recording oximeters mentioned on this forum. I don't have a personal recommendation because I don't have one that records data. While I'm awake, and able to read it, I don't show hypoxia.

I dont even know what hypoxia is. Will have to google.

What causes hypoxia and sleep apnoea? Never had either of these things in my life.

 

[Kenjie]

This makes me suspect either conventional sleep apnea or a "silent" form producing episodes of hypoxia at night. A recording pulse oximeter could show if this is going on. I doubt you are in shape for a regular sleep study, until the known infection is cleared, but you might be able to check on this yourself with one of those recording oximeters mentioned on this forum. I don't have a personal recommendation because I don't have one that records data. While I'm awake, and able to read it, I don't show hypoxia.

Are you sure its not just anxiety?

 

[Kenjie]

Saw physio today who says I have BPPV in left ear.

Am now at hospital talking to them anout my concerns about my heart.

 

[Kenjie]

I think its safe to say i can rule out p.o.t.s! About to do chest xray at hospital now. Finally a process of elimination.

 

[anciendaze]

Are you sure its not just anxiety?

No, but anxiety alone will not bring you out of a sound sleep. Worry typically depends on consciousness. However, I am very sure that hypoxia will produce anxiety, even panic attacks. The first order of business is to correct the identified problem with the infection. That may reduce other problems to a manageable level. Drainage from an infected sinus during sleep is a known problem, and your doctors are doing the right thing by ordering a chest X-ray to see if there are infected patches in your lungs. I am not assuming this will be the complete solution, and I'm outlining what the next step might be to eliminate a problem that persists after treatment.

Just about everyone who comes to this forum is likely to have disturbed sleep, but, all too often, it is hard to pin down a cause. You have several symptoms of dysautonomia, plus evidence of dyspnea (shortness of breath) in response to things that should not cause this, and one possibility on my mind is a problem with autonomic function which causes hypoxia when you enter deep sleep, and the higher centers of the brain stop working. This can bring a person out of deep sleep in a panic. Enough of this destroys the restorative value of sleep. I know people who almost died as a result. Some have required surgery. Some have required implanted nerve stimulators.

You need not have this, but if current treatment does not resolve problems I want you to know there are still avenues to pursue in tracking down physiological problems.

 

[Kenjie]

You need not have this, but if current treatment does not resolve problems I want you to know there are still avenues to pursue in tracking down physiological problems.

Which avenues?

I have an appointment next month with cardiologist. Ent next month. An eye specialist in couple weeks.

 

[anciendaze]

Which avenues?

I have an appointment next month with cardiologist. Ent next month. An eye specialist in couple weeks.

If you are like most who end up here you will not have a heart problem, per se. You may have low cardiac output, but will likely score satisfactorily on standard tests. You should be tested to rule out some serious possibilities, but if they don't show up you should not assume the problem is psychological. Your sinus infection certainly was not, and suppressing symptoms could have led to permanent damage.

I won't go into the kind of heart/circulatory problems we suspect in this post, except to say that it concerns venous return and filling, rather than ejection fraction, and violates several common assumptions of cardiologists and pulmonologists. We have references indicating that such patients do exist, and likely make up a significant percentage of those referred for psychiatric treatment.

Should your sleep continue to be interrupted by panic attacks, or if you experience shortness of breath in circumstances that do not warrant this, it is still possible misbehavior of your autonomic nervous system is affecting your breathing, at least while you are sleeping or standing. Neurological control of breathing is complicated, and does not have a single center, which means it can fail in multiple ways.

It is also possible for structural problems in your airways to produce conspicuous sleep apnea, but this is the kind of thing the doctors you are seeing will be more likely to catch, since it is constant. Scarcely anyone is looking for episodes of hypoxia, of whatever origin, during normal sleep. The idea that these may take place without any obvious obstruction, simply due to autonomic misbehavior, is generally dismissed out of hand. It doesn't happen in about 98% of the population, and by typical medical reasoning this amounts to ironclad proof that the possibility can be dismissed in practice.

In this country the ignored 2% would amount to some 6 million people.

The technology to measure episodes of hypoxia during sleep at home now exists, although I would not expect your healthcare system to pay for this. If you get through these coming appointments without resolving your problem, there are still other options. But, that is a potential battle for a later day. We will wait and see if that needs to be fought.

 

[Kenjie]

If you are like most who end up here you will not have a heart problem, per se. You may have low cardiac output, but will likely score satisfactorily on standard tests. You should be tested to rule out some serious possibilities, but if they don't show up you should not assume the problem is psychological. Your sinus infection certainly was not, and suppressing symptoms could have led to permanent damage.

I won't go into the kind of heart/circulatory problems we suspect in this post, except to say that it concerns venous return and filling, rather than ejection fraction, and violates several common assumptions of cardiologists and pulmonologists. We have references indicating that such patients do exist, and likely make up a significant percentage of those referred for psychiatric treatment.

Should your sleep continue to be interrupted by panic attacks, or if you experience shortness of breath in circumstances that do not warrant this, it is still possible misbehavior of your autonomic nervous system is affecting your breathing, at least while you are sleeping or standing. Neurological control of breathing is complicated, and does not have a single center, which means it can fail in multiple ways.

It is also possible for structural problems in your airways to produce conspicuous sleep apnea, but this is the kind of thing the doctors you are seeing will be more likely to catch, since it is constant. Scarcely anyone is looking for episodes of hypoxia, of whatever origin, during normal sleep. The idea that these may take place without any obvious obstruction, simply due to autonomic misbehavior, is generally dismissed out of hand. It doesn't happen in about 98% of the population, and by typical medical reasoning this amounts to ironclad proof that the possibility can be dismissed in practice.

In this country the ignored 2% would amount to some 6 million people.

The technology to measure episodes of hypoxia during sleep at home now exists, although I would not expect your healthcare system to pay for this. If you get through these coming appointments without resolving your problem, there are still other options. But, that is a potential battle for a later day. We will wait and see if that needs to be fought.

Thank you for sharing lots of info. Where do I go next?

 

[anciendaze]

First, you should follow through on those appointments. You need to make certain you do not have a persistent staph infection in your lungs as a result of drainage during sleep. You need to make sure the infection in your sinus is not burrowing into bone. You need to make sure you do not have a conventional heart problem of whatever origin.

If you reach the end of this sequence of treatments without eliminating the dyspnea (shortness of breath) and night terrors, you probably will not be offered anything else except symptomatic treatment and counseling. That is where I would suggest buying your own recording pulse oxymeter to monitor oxygen saturation at home during sleep. If this shows drops in oxygen saturation during sleep, even modest ones that don't upset most doctors, it may be time to investigate a small oxygen concentrator and low-dose supplemental oxygen to eliminate nocturnal hypoxic episodes. A modest drop at your fingertips may translate into a dangerous drop elsewhere in your body. Your might be surprised to learn what a cardiovascular system does during sleep apnea producing hypoxia, which can even trigger heart attacks.

There are downsides to things as benign as supplemental oxygen. You don't want to become dependent on it. But, if you do show episodes of hypoxia during sleep, and experience night terrors as a result, this can interrupt deep sleep, and people need that sleep. A small amount of supplemental oxygen at night, just enough to eliminate those episodes, could make a big difference.

I'm concerned that some people reading this may strip off the various qualifiers I've used, and insist on treatment with oxygen in situations where it will not help them, and may harm them. So, I will repeat: follow through on the suggested course of diagnostic tests and treatments. If this does not eliminate the problems you are experiencing, consider getting a pulse oxymeter that will tell you if you are having drops in oxygen saturation during sleep, which would explain night terrors. If this does show that your autonomic system is not maintaining continuous oxygen levels when the higher centers of your brain are off-line, consider adding just enough supplemental oxygen to eliminate those episodes.

 

[anciendaze]

I'm going to add a personal note here which is not aimed at Kenjie.

I have long had problems with dysautonomia, which primarily showed up as orthostatic intolerance. This description can even be narrowed to neurally-mediated hypotension while standing. When pulse pressure drops below 20 mm. Hg. I start to "gray out". (It goes lower, but I'm am not able to read an instrument under those conditions.) I can avoid passing out if I am able to walk, as this pumps venous blood back to the heart, which is consistent with the idea that the problem is low fill pressure rather than a more conventional "heart problem." I have also experienced night terrors, which were long considered evidence of "depression". When about 30 medications tried did not relieve this, the problem description was "treatment-resistent depression", not misdiagnosis.

There were episodes of suspected seizures, but no real evidence of a seizure disorder turned up. This led to the hypothesis that I might be having "absence seizures" too rarely to catch on an EEG. A promising treatment for seizure disorders was an implanted vagus nerve stimulator (VNS), and in some cases where this was tried the seizures continued, but associated "depression" was lessened. This led to an alternate indication of use in "treatment-resistant depression".

On this poorly-substantiated basis there were experiments with VNS implants to relieve "depression" and I was the first of some 10 in the region. Eventually, the powers-that-be decided VNS implants were not very effective in relieving "depression" and stopped funding more. The company making the device acts like they never heard of dysautonomia when there is a field on a form saying "depression".

One definite change following the implant was an improvement in sleep. I also stopped collapsing in public, but part of that was due to increased caution.

Last year I had a public collapse like those I had before the implant, and tests showed the battery on the implant had failed after 10 years. I then scheduled surgery to replace the battery, which required replacing the entire unit. (The firmware in the old unit was obsolete anyway.)

I expected the cost of a new unit to be about $20,000, so that was not a shock. But, just days ago, while trying to straighten out the bills from that episode, I noticed the field for cost without insurance said $169,000. This was minor outpatient surgery done in less than a day. The old lead to the vagus nerve was still usable, so there was no particular need for a neurosurgeon, though one was present. I used a neurosurgeon who will accept Medicare rates, and the field mentioned is for patients without insurance, but if this is the true cost, it is too much for the vast majority of patients, and I am well aware that many such patients are uninsurable. It is also far from a complete solution. I don't know what will happen if Medicare denies the charge.

With the costs above, I have to say this treatment option is now scarcely practical for patients who are not millionaires. This is why I have been following news of treatment with low-dose nocturnal oxygen. I don't know if it would help me, but it is an option for others.

 

[Belgiangirl]

POTS patient too. Didn't know this was another disease.
As long as I can remember I must lean on something after I step up or I go back down while everything blackens.

I experience this very often in various ways.
One period it became this worse that I wasn't been able to walk normally for weeks and do stuff for months. This was after an operation to the stomach. I was laying in a universitary hospital and they were clueless about what they were watching. It was 7 years ago. Imagine.

No tilt table test or something like that. Belgium safes a lot on health care costs, at least for younger individuals...
I just said to my GP oh yes, I have this ... He was like: " lot of my patients have that".


Why and how let this get diagnoses? And after all it doesn't change anything, doesn't it? It isn't something typical for a syndrome isn't it?

 

[anciendaze]

@Belgiangirl

The POTS diagnosis is more common among females than males, and it is only one form of dysautonomia. Many "experts" on the problem don't actually know much.

The fact that stimulating my vagus nerve lessened symptoms looks like a strong indication the problem is outside the brain, and not of psychological origin. This has little impact on doctors who find psychological diagnoses handy ways to dispose of complicated cases without convenient clinical signs. I would advise you to check with Dysautonomia International.

 

[Kenjie]

So i just logged back in to share. I dont believe I have pots or autonomic function as doctors and gps had thought. One gp also thought i had excess fluid on the brain also false.

Ya know what.. all it was were bacterial infections that went undetected or untested for so long.. including sinus infection which i feel is still there.

My heart rate isnt beating fast. Or slow like it was. My balance returned to normal a week ago and dizzy spells have been very few. It has been 6 months just to feel this much better. Although still getting a bit of tiredness/fatigue which i feel is to be expected.

It has been such a stressful time and with healthcare practitioners not taking me seriously who wouldnt get anxiety doing the 'doctor chase'.

I have been taking pre+probiotic capsules for better gut health. And to try to keep the bacteria infections away.

The candida (thrush) totally cleared up. Still moderate level of staph in my sinus but supposedly nothing to be of concern.

So the last thing id like to do is get another ct scan of my sinuses just to see how much gunk is in there. I see Ent end of june.

Saw opthamogist about my eyes.. he said that my eyes are working harder due to the aging process. Im 35. Had glasses since 5. So i have to update my lenses and frequently wear my glasses.

Bacteria can wreak ALOT of havoc on your body and unfortunately doctors werent really listening thus in then I was left to become more ill. They were loking everywhere else but the sinuses or bacteria infections. Hence why they couldnt find what was wrong.

I need to change gp again for the third time cos current one is of no help all.

So really the last part of this current journey is to still take it easy and see the ent. I still have the pressure in my forehead which i dont feel is all to do with my eyes.

Also natural clean eating and natural healthy alternatives are of interest to me now but wont happen overnight. That includes gluten free by choice. I do know bread can bloat you anyway lol.

Hopefully in time the forehead pressure will ease as well as the tiredness even though im sleeping well.

I also want to try selenium and natural iodine to bring my anti thyroglobulin level back down to normal range.

So its all a slow work in progress.