Dysautonomia

[PrairieLights]

I'm not really sure where to post as this topic is orthostatic intolerance and I see mention of POTS, I believe both are types of dysautonomia (POTS definitely is).

Until recently, I didn't know that dysautonomia was part of ME Cfs or commonly comorbid.

I have dysautonomia but not one that has been classified into a type. I was told that most people with dysautonomia don't manage to neatly fall into a defined category.

I am wondering if there are others out there like me with dysautonomia that isn't orthostatic intolerance.

My dysautonomia started months 10 months after all my other issues and after when I believe cfs started.

Treatment wise, I get bisoprolol for tachycardia and palpitations and left to figure the rest if the symptoms and coping strategies myself. Pretty much I am doing trigger avoidance to the extent that is possible.

One thing I struggle with is physical symptoms of stress and anxiety and emotions that come with it, when my body entirely overreacts to something I briefly felt... But don't match my actual thoughts or how I would respond. I recognize it now, so that's better, but I don't have anything to "treat" it, and the GP didn't even seem to understand what I was saying.

Before I got much tougher cutting things out of my life the stress responses had started triggering auras without headaches. Those have entirely stopped since stopping that stress trigger.

Anyhow, just wondering if there are others like me.

(Going to bed now, will read any replies tomorrow)

 

[boolybooly]

A lot of people complain about similar. Hit me harder in the early years and took some getting used to and learning to dial down my reactions. Diagnosis helped a lot to know what I had so I could discount other theories and just calm down and sit it out.

People talk about adrenalin highs and also sensory hypersensitivity, hyperacusis (sound), hypersensitivity to odour especially artificial scents. I also experienced episodes of high adrenalin, you might call panic attacks but it was more like I was very wired and seemed to be made much worse by drinking caffeinated tea. I have had to stop eating a lot of common foods which make it worse.

IMHO this aspect of the syndrome is probably related to systemic nervous upregulation leading to nervous over-reaction disrupting the entire nervous system including autonomic systems and leads to some people needing to stay in a darkened room with ear muffs and blindfold. It can also cause emotional lability by disturbing the balance in the mid-brain limbic system, which is very hard to spot sometimes as it can arrive as a kind of euphoria and then devolves into feeling tetchy.

It disturbs everything. I dont think you are alone. Anyway I have to rest now. Hope you have a good morning.

 

[PrairieLights]

A lot of people complain about similar. Hit me harder in the early years and took some getting used to and learning to dial down my reactions. Diagnosis helped a lot to know what I had so I could discount other theories and just calm down and sit it out.

People talk about adrenalin highs and also sensory hypersensitivity, hyperacusis (sound), hypersensitivity to odour especially artificial scents. I also experienced episodes of high adrenalin, you might call panic attacks but it was more like I was very wired and seemed to be made much worse by drinking caffeinated tea. I have had to stop eating a lot of common foods which make it worse.

IMHO this aspect of the syndrome is probably related to systemic nervous upregulation leading to nervous over-reaction disrupting the entire nervous system including autonomic systems and leads to some people needing to stay in a darkened room with ear muffs and blindfold. It can also cause emotional lability by disturbing the balance in the mid-brain limbic system, which is very hard to spot sometimes as it can arrive as a kind of euphoria and then devolves into feeling tetchy.

It disturbs everything. I dont think you are alone. Anyway I have to rest now. Hope you have a good morning.

Thanks.

I find it hard to find information or a community to help understand dysautonomia better because it seems most communities form around POTS.

 

[Jonathan Edwards]

As a physician I am not at all sure what 'dysautonomia' is supposed to mean. I mostly hear the word being used by colleagues whose scientific understanding I doubt. Traditionally, it has been associated with rare syndromes where there is generalised failure of autonomic nerves but that does not seem to have anything to do with postural orthostatic tachycardia (POT).

In POT it seems that the autonomic systemic is working OK, in that there is a change in heart rate in response to stimulus. The query is what the stimulus is and whether it is abnormal. POT seems to occur in some healthy people so it is all a bit unclear how important it is.

When you use the word dysautonomia, what exactly are you referring to?

 

[PrairieLights]

As a physician I am not at all sure what 'dysautonomia' is supposed to mean. I mostly hear the word being used by colleagues whose scientific understanding I doubt. Traditionally, it has been associated with rare syndromes where there is generalised failure of autonomic nerves but that does not seem to have anything to do with postural orthostatic tachycardia (POT).

In POT it seems that the autonomic systemic is working OK, in that there is a change in heart rate in response to stimulus. The query is what the stimulus is and whether it is abnormal. POT seems to occur in some healthy people so it is all a bit unclear how important it is.

When you use the word dysautonomia, what exactly are you referring to?

I was told it is dysregulation of the autonomic nervous system. I was also told it would go away and it didn't. A few symptoms went away like spontaneous vomiting and intestinal stuff. But tachycardia and palpitations haven't and neither have the stress responses physical or emotional. I also have different fatigue responses or episodes to the hypothyroidism and cfs.

I try and explain my symptoms like having a stencil for each condition and some overlap a bit but are different to me even if the description sounds the same or similar.

 

[Jonathan Edwards]

I was told it is dysregulation of the autonomic nervous system.

Yes, but that could mean any number of things. It is also not clear whether it means that the fault is in the autonomic system itself or something else that regulates it. To me this is too vague a term to be of any clinical use.

 

[Sasha]

Yes, but that could mean any number of things. It is also not clear whether it means that the fault is in the autonomic system itself or something else that regulates it. To me this is too vague a term to be of any clinical use.

If you find you may have POTS or any other form of OI, a bit of googling takes you to sites such as Dysautonomia International (and plenty of others, including John Hopkins Medical), all telling you authoritatively that this is a form of dysautonomia. Until I saw you posting about it recently I had no idea that that wasn't well established. I'm not surprised so many PwME thought it was orthodoxy.

 

[PrairieLights]

Yes, but that could mean any number of things. It is also not clear whether it means that the fault is in the autonomic system itself or something else that regulates it. To me this is too vague a term to be of any clinical use.

Well, I am totally up for someone running tests that actually give answers but it doesn't seem that is something anyone is bothering to do.

 

[Jonathan Edwards]

Well, I am totally up for someone running tests that actually give answers but it doesn't seem that is something anyone is bothering to do.

I think the problem is that for the tests we have it is not clear what to make of the answers and nobody knows what other tests to think up. An awful lot has to be known in order to be able to use a test to reliably explain a pattern of symptoms. It is not so much that nobody is bothered but that they don't know what to try.

 

[PrairieLights]

I think the problem is that for the tests we have it is not clear what to make of the answers and nobody knows what other tests to think up. An awful lot has to be known in order to be able to use a test to reliably explain a pattern of symptoms. It is not so much that nobody is bothered but that they don't know what to try.

The only tests I have had are blood tests and heart tests then they go oh well let's see if it will adjust back.

Supposedly mine was virus triggered (not covid) , which has made me worry about viruses now. And most of what I have learned that triggers my symptoms since I have figured out myself, but of course couldn't say why these things are triggers for symptoms.

 

[Jonathan Edwards]

The only tests I have had are blood tests and heart tests

That is probably about all we have. If there is no sign of something like an adrenaline secreting tumour or a dangerous heart rhythm then waiting and hoping may be the best plan. Obviously I cannot say anything specific about anyone's particular case but very often in this situation more complicated tests are bet avoided because doctors often over interpret them and start prescribing things that have no reliable evidence of benefit.

 

[PrairieLights]

That is probably about all we have. If there is no sign of something like an adrenaline secreting tumour or a dangerous heart rhythm then waiting and hoping may be the best plan. Obviously I cannot say anything specific about anyone's particular case but very often in this situation more complicated tests are bet avoided because doctors often over interpret them and start prescribing things that have no reliable evidence of benefit.

That's probably wise seeing as my GP barely knows what to do with me now with this and hypothyroidism. I end up self testing and insisting on appropriate changes as the GP thinks everything is always fine.

 

[mango]

I find it hard to find information or a community to help understand dysautonomia better because it seems most communities form around POTS.

I'm sorry it's been so difficult for you to find information and help. I'd encourage you to keep looking though, because dysautonomia peer support groups that are open to and relevant to other forms of dysautonomia besides POTS definitely exist.

I'm personally not active in any English speaking groups, but if you understand Swedish I could recommend you a couple of Facebook groups?

Also, I find that so much about POTS is directly relevant to people with other forms of dysautonomia as well, including research articles, peer support groups and advice about symptom relief. Many treatment options overlap too. My impression is that there are way more similarities than differences between the different diagnoses under the dysautonomia umbrella. It's been very worthwhile for me to read up on POTS and spend time in POTS support groups.

There is a lot of interesting research too. Here are some examples that are currently on my to be read list:

Dysautonomia following COVID-19 is not associated with subjective limitations or symptoms but is associated with objective functional limitations.
https://pubmed.ncbi.nlm.nih.gov/34896622/

Plasma proteomic profiling in postural orthostatic tachycardia syndrome (POTS) reveals new disease pathways.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9681882/

Postural orthostatic tachycardia syndrome and other common autonomic disorders are not functional neurologic disorders.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11614728/

 

[PrairieLights]

I'm sorry it's been so difficult for you to find information and help. I'd encourage you to keep looking though, because dysautonomia peer support groups that are open to and relevant to other forms of dysautonomia besides POTS definitely exist.

I'm personally not active in any English speaking groups, but if you understand Swedish I could recommend you a couple of Facebook groups?

Also, I find that so much about POTS is directly relevant to people with other forms of dysautonomia as well, including research articles, peer support groups and advice about symptom relief. Many treatment options overlap too. My impression is that there are way more similarities than differences between the different diagnoses under the dysautonomia umbrella. It's been very worthwhile for me to read up on POTS and spend time in POTS support groups.

There is a lot of interesting research too. Here are some examples that are currently on my to be read list:

Dysautonomia following COVID-19 is not associated with subjective limitations or symptoms but is associated with objective functional limitations.
https://pubmed.ncbi.nlm.nih.gov/34896622/

Plasma proteomic profiling in postural orthostatic tachycardia syndrome (POTS) reveals new disease pathways.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9681882/

Postural orthostatic tachycardia syndrome and other common autonomic disorders are not functional neurologic disorders.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11614728/

I speak French but not Swedish. Also several years ago I left social media and haven't regretted it. Only downside has been recently websites are stoppomg online contact and support groups are mostly on facebook.