Who has autonomic dysfunction?

[anciendaze]

@Kenjie,

There is a lot of material there. The change in symptoms after giving birth and an infectious disease does make me wonder about autoantibodies, which can cause symptoms of POTS. This is more likely after giving birth to a son, due to differences in makeup you might not see with a female child. You do sound like you are experiencing hypothyroidism, and a first thing to check would be autoantibodies to thyroid. Another thing which concerns me is the comment that the diuretics made you short of breath. Dyspnea is not a typical reaction. Can you tell us which drug was used? Some are more likely to affect particular electrolytes, and if you are already having trouble with some ion like potassium this will make it worse. You can even have autoantibodies attacking particular ion channels, and these can cause very strange symptoms.

(Extreme case you probably do not have: have you ever experienced temporary paralysis where a muscle completely stopped responding? What about extreme weakness which left you like a dishrag?)

You are describing episodes of hypotension (low blood pressure) and diuretics will likely exacerbate these. Doctors have good reason to worry about high blood pressure, but are curiously ignorant about episodes of hypotension, particularly if these only take place while upright. Mostly they check patients lying down or sitting.

I'm assuming your doctors have already checked your heart, so I am not immediately concerned about your ache in the chest unless it goes along with dyspnea. Does this ever improve when you lie down? Does it ever get worse on exertion like climbing stairs? The first is more like our experience with ME/CFS, and not immediately life-threatening, while the second is a signal to check for heart problems pronto.

That's probably more than enough to deal with at the moment.

 

[kangaSue]

This has occurred to me... I thought yesterday I may have had this syndrome off n on since having son 5.5 yrs ago..

See the thread I posted about Nutcracker Syndrome.
http://forums.phoenixrising.me/inde...ith-pots-and-childhood-cfs.48793/#post-808851

I think the majority of cases start as a consequence of having kids but it can also be as a result of having other abdominal artery compression syndromes like Superior Mesentery Artery Syndrome or to a lesser extent, Median Arcuate Ligament Syndrome and can cause a wide range of symptoms that can all appear to be unrelated and far removed from the classic text book route.

 

[Kenjie]

See the thread I posted about Nutcracker Syndrome.
http://forums.phoenixrising.me/index.php?threads/nutcracker-syndrome-pelvic-congestion-syndrome-–-linked-with-pots-and-childhood-cfs.48793/#post-808851

I think the majority of cases start as a consequence of having kids but it can also be as a result of having other abdominal artery compression syndromes like Superior Mesentery Artery Syndrome or to a lesser extent, Median Arcuate Ligament Syndrome and can cause a wide range of symptoms that can all appear to be unrelated and far removed from the classic text book route.

Could having had an epidural in my spine have potentialy contributed in any way?

 

[Kenjie]

@anciendaze I used furosemide when it was thought I had pseudo tumour cerebrai eg excess fluid on the brain..but yes it made me extremely short on breath that after 3 weeks I stopped taking it by choice because I'd rather breath... although I still get some shortness oder breath but nowhere near as bad as when I was using that medication. ..

The only thing I have noticed about paralysis is my arms frequently 'fall asleep' and go numb for a moment then return to normal function. ..

When I first got sick in December themail ache in my chest came and went but now lately it's there all the time regardless of sitting or lying... maybe it's just the muscles around or near my heart perhaps from being tense when I have scary episodes I don't know... even when walking.. what happens when I walk too long I get hot then heart starts pumping then dizziness comes on and from thereal panic if I don't stop it in its tracks and sit or lay down.

Yep haso definitely been alot of symptoms to deal with let alone dealing with the whole thing at all... I've gotten through some pretty hard things buy whatever this is... is REALLY HARD. A lot of the time I think my body is failing me and I will surely die any moment.

It is ironic and uncanny though. .. couple yrs ago I said to my parents eventually I'll catch a bug and never bounce back from it again.. I've felt like this could be that time... although I am determined to get through it...

I do admit though it's so tiring every Yr fighting against my health for the purpose of good health. Seems like a long road til I ever truly get there if I ever do.

 

[Kenjie]

@kangaSue

I think the majority of cases start as a consequence of having kids.[/QUOTE]

I've read that many womens' health suffers after childbirth. I always got sick but was way healthier before my son. A lot of the time I still wish I was that person and had that body but I'm not. Although can never acceat this fact... same goes for growing old.. never waned to grow old...

But then hey wouldn't rewind the clock and not have had my son.

I think it is a shame I wasn't better educated on health and body before the fact.. imagine if we were all armed with knowledge beforehand we may have all been able to save ourselves from our own physical he'll but still have had kids and lead a happier healthier life... but it only ever happens in hindsight after the fact.. that's when we really learn..

 

[Kenjie]

@anciendaze you touched on a good point about the possibility that some people have not reached the point of it being irreversible... I don't think I'm at that point yet either..... but...due to the fact it has been 5months living like this already I fear reaching that point due to lack of right treatment or not seeing the right specialists in time...

I'm afraid and keep saying to my parents that before anyone really does finally help me it will be too late...

Because it seems like such a time process to get to the bottom of it...eg find the answers. .. all the while you're searching your body potentially gets worse in the process during the waiting period. It is a waiting game and very frustrating. This is something that I get very upset about...

...feeling brushed off and overlooked by doctors who only have 'theories' on what is wrong.

Yesterday I came to the realisation that it is pointless seeing my doctor again unless for medication update in couple months on the metoprolol or for any necessary referrals. .. he believes i will get better on this medication... which makes me feel as though he won't help me any furather and that he feels he's done his job...

It is pointless seeing anyone who is not specialised in these sensitive areas of illness... so now I want to get onto a cardiologist and take it from there... perhaps even an endocrinologist... but I already know how hard it is getting the referrals out of doctors. . I ain't giving up though..

 

[Kenjie]

I have a question:

Because I'm getting nausea last couple days.. bit like feeling sea sick...at what point do ya try again at a hospital when ya feel doctor is of little help... or do you just wait it out and if so how...?

Easier said than done on sitting at home and just dealing with it especially the worst of it..

And if I had a lot to say then yes I'm getting 5 months of it off my chest.

 

[kangaSue]

Could having had an epidural in my spine have potentialy contributed in any way?

Not to Nutcracker Syndrome, no.

I think it is a shame I wasn't better educated on health and body before the fact.. imagine if we were all armed with knowledge beforehand

It's certainly too late after the fact. Go to a doctor too clued up on other things that could pertain to your condition and you get steered in the direction of the Psych's because you're seen to be worrying too much.

When I first got sick in December themail ache in my chest came and went but now lately it's there all the time regardless of sitting or lying... maybe it's just the muscles around or near my heart perhaps from being tense when I have scary episodes I don't know... even when walking.. what happens when I walk too long I get hot then heart starts pumping then dizziness comes on and from thereal panic if I don't stop it in its tracks and sit or lay down.

I can't think of the name of it but there's a heart condition that can you get from having had a virus that has these symptoms. It also sounds like my husband who has Ischemic Heart Disease. A cardiac Stress Test would be helpful here I think.

Because I'm getting nausea last couple days.. bit like feeling sea sick...at what point do ya try again at a hospital when ya feel doctor is of little help... or do you just wait it out and if so how...?

Hospital emergency room doesn't want to know you either unless you have severe symptoms or at deaths door. Go there a lot with chronic pain and you wear the badge of a drug seeker. I have a Specialist's letter now for such occasions stipulating what to give me for severe pain.

 

[Kenjie]

Not to Nutcracker Syndrome, no.

It's certainly too late after the fact. Go to a doctor too clued up on other things that could pertain to your condition and you get steered in the direction of the Psych's because you're seen to be worrying too much.

I can't think of the name of it but there's a heart condition that can you get from having had a virus that has these symptoms. It also sounds like my husband who has Ischemic Heart Disease. A cardiac Stress Test would be helpful here I think.

Hospital emergency room doesn't want to know you either unless you have severe symptoms or at deaths door. Go there a lot with chronic pain and you wear the badge of a drug seeker. I have a Specialist's letter now for such occasions stipulating what to give me for severe pain.

That's a good idea to have the letter. I'll keep that in mind. Now is just a waiting game when to see a specialist.

You're right about worrying too much.. I do this but with good reason... I think the problem lies with all the doctors who don't listen. Not the patient.

I have read that heart conditions can have very similar symptoms to all these syndromes.

At the end of the day I could have anything. Id just really like to know exactly what.

 

[Kenjie]

And I hear you there about how the hospital won't do anything until you're at deaths door or keeled over on the ground... I can never understand why anyone in the Healthcare practices would allow anyone to get to that point.

I am aware that sometimes it happens suddenly... but what about those that have ongoing issues but are ignored..

Appalling really.

 

[kangaSue]

At the end of the day I could have anything. Id just really like to know exactly what.

They call that the holy grail, it's what we all seek.

And I hear yang there about how the hospital won't do anything until you're at deaths door or keeled over on the ground... I can never understand why anyone in the Healthcare practices would allow anyone to get to that point.

I am aware that sometimes it happens suddenly... but what about those that have ongoing issues but are ignored..

You're preaching to the converted. I got turned out of Emergency two days running with a twisted bowel. I ended up ringing the GI surgeon's Registrar who set the right wheels in motion but not before the bowel had died and needed some major re-plumbing.

 

[anciendaze]

@Kenjie,

You are still describing a wide range of things, and it is hard for us to pull a diagnosis together without a few solid clues that point in a specific direction. One of these turned up when you described furosemide (Lasix) causing "shortness of breath" (dyspnea). This is not a side effect to ignore.

There are several possible ways this could happen. Furosemide is known to deplete potassium ions. If you are suffering from impairment of potassium channels that is one possibility. Another route shows up from additives other than the active ingredient. These typically include magnesium salts. Because magnesium ions can pass through calcium channels, but not take part in the same reactions once inside a cell, magnesium ions can act as calcium antagonists. We've had one patient here who suffered "flash pulmonary edema" when given a large dose by IV. This definitely caused severe dyspnea. The problem is not "low calcium" as levels in the blood are fine, it is in calcium ions needed inside cells to fuse vesicles containing biochemicals with cell membranes to release the contents. There are a lot of different functions calcium channels perform, so I can't immediately tell what else this implies.

It is harder to untangle some of the other symptoms. Some of the strange sensations you report in your upper body remind me of thoracic outlet syndrome. This could have been there all along, but only become exacerbated when other factors placed a larger physiological load on your cardiovascular system. I suspect you have periods when you are hypovolemic, but that is another thing doctors don't look for, unless you suffer traumatic blood loss. I'm talking about a problem in regulation of fluids and electrolytes. This raises the possibility in my mind that you may have a problem with mineralcorticoids, and this can be caused by autoimmune responses against organs or receptors.

Added: some of the possibilities above include a shift in autonomic function from parasympathetic to sympathetic activation. I'd like to know if you have antibodies to GAD65, which would cause such a shift. This is usually mentioned in connection with type 1 diabetes, but so far you haven't mentioned much that might be interpreted as carbohydrate intolerance. I would hope to prevent development of the full illness, but such interventions are rare.

My uncertainty about what is going on in terms of cause and effect goes all the way back to the sinus infection you reported. I believe you said there was a CAT scan of some sinuses which showed "stuff" in them, but not sinusitis. The stuff was assumed to be mucus, but in my experience a CAT scan does not have the ability to image soft tissue well. It is possible you had an MRI, which could tell, but if that is not true I don't believe a CAT scan could tell the difference between mucus and inflamed soft tissue. It would be able to tell that the infection had not penetrated bone, a serious danger, but it would not eliminate the possibility of chronic sinus infection. Such a focal infection could cause your immune system to misbehave in many ways.

None of this is particularly clear at this point. I am concerned about treating one symptom, tachycardia, with no idea what was causing it. You may be overmedicated with that beta-blocker, though changing that is a delicate professional matter. Something beyond psychological factors has been changing your cardiovascular behavior, and doctors have been treating perceived symptoms separately with little attempt to understand the cause.

As I've said, doctors may be told in school "85% of your patients will get better no matter what you do." A second factor in the profession is that treatments which work on 95% of patients will have strong peer support, and this translates into legal protection. Anything beyond that is implicitly considered a rare disease.

A standard maxim of the profession is "When you hear hoof-beats, think horses, not zebras." Welcome to the zebra herd.

 

[Kenjie]

@anciendaze and I am still having a hard time getting doctors to look or search more closely.

Anyhow ... something else I've experienced. ... last 2 days feeling super nauseous. .. then lastonight I woke 3 times to racy heart... bit like an adrenalin rush... why does this happen?

Iveven experienced it a few times in the last few months... accompanied with waking up to the hot flushes some times dizzy from the shock or panic of waking up to such awful symptoms.

I'm not sure what to do next... I want to go straight back to doctor and say here.. this is what is happening.. but I tried that at start of week already with the low heart rates. Last night before I slept it was as low as 39bpm! Ffs!

 

[Kenjie]

They call that the holy grail, it's what we all seek.

You're preaching to the converted. I got turned out of Emergency two days running with a twisted bowel. I ended up ringing the GI surgeon's Registrar who set the right wheels in motion but not before the bowel had died and needed some major re-plumbing.

That is truly shocking! Where they could have gotten to it before it died but nooo...

 

[TigerLilea]

And I wish to add that ive had a ct scan on my forehead which did show 'debris' in my sinuses which is mucus but the report stated no concern for sinusitis infection..

Yet I still have the pressure in my head. I recall having same thing in 2014. As well as pressure on bridge of nose.

I'm a bit lost as to where to next. I've been chasing my tail.

I'm on waiting list to see someone within the hospital but that's 3-4 months from now to do tilt table.

I've booked another ENT appointment which is at end of June.

Unfortunately most sinus issues aren't resolved with antibiotics or surgery. I have had sinus issues for the past 26 years and they are getting worse. The sad truth is that there is very little they can do for chronic sinus problems. Antibiotics and surgery don't work 90% of the time. Medical science is starting to look at sinus bacteria the same way as they are with gut bacteria. They think that the good bacteria is getting wiped out allowing the bad bacteria to take over and cause problems. I've heard that they are researching probiotics that could potentially help with sinus issues but it could be a while before we see anything hitting the market (ie nasal sprays).

 

[TigerLilea]

I have a question:

Because I'm getting nausea last couple days.. bit like feeling sea sick...at what point do ya try again at a hospital when ya feel doctor is of little help... or do you just wait it out and if so how...?

Easier said than done on sitting at home and just dealing with it especially the worst of it..

And if I had a lot to say then yes I'm getting 5 months of it off my chest.

Going to the ER should only ever be done in an emergency. They are overworked and overcrowded as it is, and they don't appreciate people coming in who aren't emergency cases.

Once you've had ME/CFS long enough, you realize that it is a complete waste of time going in to see doctors about anything related to this condition. They don't know what to do with us; we are untreatable at the present time until medical science can figure this mystery out.

 

[Kenjie]

Going to the ER should only ever be done in an emergency. They are overworked and overcrowded as it is, and they don't appreciate people coming in who aren't emergency cases.

Once you've had ME/CFS long enough, you realize that it is a complete waste of time going in to see doctors about anything related to this condition. They don't know what to do with us; we are untreatable at the present time until medical science can figure this mystery out.

So I just stay home with slow heart rate one moment and racy the next?

 

[Mohawk1995]

@Kenjie The following explanation is theoretical, but if indeed your autonomic system is not functioning properly it makes sense to me that your neuro-immune/neuro-protective functions are not working properly. So dysregulation could result in problems with the following systems that are autonomically regulated:
Digestive: nausea, reflux
Immune: histamine, mast cell issues (chronic nasal congestion), poor immunity to every bug out there
Sensation: Unusual sensations, numbness, tingling, etc...
Energy production/Mitochondrial: Fatigue
Motor Planning: Weakness, lack of coordination
Hearing: Ringing in the ears, unusual sounds
Circadian functions: poor sleep patterns, cycles
Pain response: Direct, unusual, widespread pain and/or migraines
Temperature: Hot flashes, shivers, intolerance to hot or to cold or both
Perspiration: Excessive sweating
Heart Rate: Tachycardia (high heart rate)
Blood Pressure: Hypertension
Respiration: Hyperventilate
Cognitive functions: Brain Fog, Word finding problems

The problem is each and everyone of these problems can also be caused by something other than autonomic dysregulation. By all means get any and all of those checked out! My thought though would be if someone is experiencing many or most of these, then the problem is most likely systemic. If no significant findings are found that relate to serious acute pathology, then a central regulatory dysfunction is probably at play which leads right back to autonomic dysregulation. We can attempt to treat all of the issues listed above individually, but the whole package will not improve (I believe) until we can get to the core issue of what is causing the autonomic dysregulation. That is why autonomic issues and ME are so hard to treat.

 

[Sushi]

So I just stay home with slow heart rate one moment and racy the next?

I agree--the ER won't know what to do with you. If you had a cardiac emergency they would be great--but not for autonomic problems. Can you find someone who works with the autonomic nervous system or a cardiologist who has at least a theoretical understanding of POTS?

 

[Kenjie]

I agree--the ER won't know what to do with you. If you had a cardiac emergency they would be great--but not for autonomic problems. Can you find someone who works with the autonomic nervous system or a cardiologist who has at least a theoretical understanding of POTS?

I'm not even diagnosed yet.. it is just another theory. I'm hoping it just ends up being a bad infection or something that is sending my body awol. I'd be so lucky