Limbs feel heavy like stone: tricyclic-induced dysautonomia

[Tidal]

I took nortriptyline in the past and it caused lasting dysautonomia. When taking nortriptyline I would stand up and be unable to move, like in periodic paralysis. That has lessened after being off of it for over 4 years but my limbs feel really heavy and I have awful, unnatural fatigue in my legs and arms that won't go.

I also have post orthostatic tachycardia syndrome now and my pulse goes up 30-40 beats when standing. I feel my pulse 24/7 and it is pronounced in abdomen.

It's similar to the dysautonomia people with long covid have but I don't think it's the same.

Tried a load of thiamine ttfd to no avail and I'm currently trying citrulline.

My brain fog is too extreme for me to make sense of all the studies. But I believe it has to do with muscarinic, alpha/beta adrenergic receptors and maybe nitric oxide. Tricyclics have messed with the whole system somehow and I don't know how to address it

 

[miquelangeles]

How is your breathing?

 

[Tidal]

How is your breathing?

I don't think it's any different, seems ok.

 

[Limon9]

I took nortriptyline in the past and it caused lasting dysautonomia. When taking nortriptyline I would stand up and be unable to move, like in periodic paralysis. That has lessened after being off of it for over 4 years but my limbs feel really heavy and I have awful, unnatural fatigue in my legs and arms that won't go.

I also have post orthostatic tachycardia syndrome now and my pulse goes up 30-40 beats when standing. I feel my pulse 24/7 and it is pronounced in abdomen.

It's similar to the dysautonomia people with long covid have but I don't think it's the same.

Tried a load of thiamine ttfd to no avail and I'm currently trying citrulline.

My brain fog is too extreme for me to make sense of all the studies. But I believe it has to do with muscarinic, alpha/beta adrenergic receptors and maybe nitric oxide. Tricyclics have messed with the whole system somehow and I don't know how to address it

What do you normally eat in a day?

 

[Tidal]

What do you normally eat in a day?

It varies. I've eaten pretty healthy and it still doesn't make a difference. Sorry but I don't wish to discuss diet when it has no impact on symptoms for me. Been down that road to death.

As I said some pathways/receptors related to dysautonomia have been altered and I want help to decipher which

 

[Limon9]

It varies. I've eaten pretty healthy and it still doesn't make a difference. Sorry but I don't wish to discuss diet when it has no impact on symptoms for me. Been down that road to death.

As I said some pathways/receptors related to dysautonomia have been altered and I want help to decipher which

You want to solve your dysautonomia, a problem involving neurotransmitters constructed from nutrients in your diet, which you don't want to discuss.

 

[Tidal]

You want to solve your dysautonomia, a problem involving neurotransmitters constructed from nutrients in your diet, which you don't want to discuss.

I eat a lot of meat and I was getting about 150g of protein a day until it was putting too much strain on my kidneys. I had no change in symptoms.

I have autism, sensory impairment and there are many foods I can not eat . I don't get as many vegetables as I could and I do eat a bit too much sugary foods.

But I was healthy and my body functioned correctly before taking tricyclics which ruined my autonomic nervous system.

 

[redsun]

I took nortriptyline in the past and it caused lasting dysautonomia. When taking nortriptyline I would stand up and be unable to move, like in periodic paralysis. That has lessened after being off of it for over 4 years but my limbs feel really heavy and I have awful, unnatural fatigue in my legs and arms that won't go.

I also have post orthostatic tachycardia syndrome now and my pulse goes up 30-40 beats when standing. I feel my pulse 24/7 and it is pronounced in abdomen.

It's similar to the dysautonomia people with long covid have but I don't think it's the same.

Tried a load of thiamine ttfd to no avail and I'm currently trying citrulline.

My brain fog is too extreme for me to make sense of all the studies. But I believe it has to do with muscarinic, alpha/beta adrenergic receptors and maybe nitric oxide. Tricyclics have messed with the whole system somehow and I don't know how to address it

Is your blood pressure also low? Do you have low muscle tone? Low muscle tone would be evidenced by generalized weakness, difficulty doing basic movements like walking, standing, etc. Muscles may look flabby and feel like they have produce little tension.

 

[Tidal]

Is your blood pressure also low? Do you have low muscle tone? Low muscle tone would be evidenced by generalized weakness, difficulty doing basic movements like walking, standing, etc. Muscles may look flabby and feel like they have produce little tension.

My blood pressure is not low now but on nortriptyline I'd get up and black out a lot.

Yes certain movements make my limbs feel heavy and drained. It's unnatural like a blocking/energy zapping sensation in my muscles. But I can still lift heavy objects. Moving them is draining however.

I don't know if this is related to cholinergic activity, nitric oxide or what or even if it is linked to POTS and the pulse in my abdomen.

 

[redsun]

My blood pressure is not low now but on nortriptyline I'd get up and black out a lot.

Yes certain movements make my limbs feel heavy and drained. It's unnatural like a blocking/energy zapping sensation in my muscles. But I can still lift heavy objects. Moving them is draining however.

I don't know if this is related to cholinergic activity, nitric oxide or what or even if it is linked to POTS and the pulse in my abdomen.

Norepinephrine activity could have downregulated. Since we depend on catecholamines to tell the muscles to contract, any mild exercise or mild resistance (like lifting an object) can become draining because there is too little signalling going to the muscles. Glutamate is what tells the muscle to contract but this signal is too weak without norepinephrine.

Serotonin activity could be downregulated and muscarinic receptors may be upregulated, but these would not generally directly affect fatigue and muscle function. It would contribute to mood related symptoms.

 

[Tidal]

Norepinephrine activity could have downregulated. Since we depend on catecholamines to tell the muscles to contract, any mild exercise or mild resistance (like lifting an object) can become draining because there is too little signalling going to the muscles. Glutamate is what tells the muscle to contract but this signal is too weak without norepinephrine.

Serotonin activity could be downregulated and muscarinic receptors may be upregulated, but these would not generally directly affect fatigue and muscle function. It would contribute to mood related symptoms.

Is there a way to upregulate norepinephrine?
I was under the impression POTS could be caused by excess norepinephrine but maybe it could also be down to low.

The thing is I also have muscle spasms after taking inositol which adds to the confusion. But this happened before that.

I actually think muscarinic receptors may be downregulated as I have GERD and can not feel my stomach or get nausea.

It's all very confusing and difficult to explain

 

[redsun]

Is there a way to upregulate norepinephrine?
I was under the impression POTS could be caused by excess norepinephrine but maybe it could also be down to low.

The thing is I also have muscle spasms after taking inositol which adds to the confusion. But this happened before that.

I actually think muscarinic receptors may be downregulated as I have GERD and can not feel my stomach or get nausea.

It's all very confusing and difficult to explain

No. Though there are multiple pharmaceuticals that can enhance its activity. POTS is more related to low blood volume. I will link a post a made in a thread earlier about possible options to experiment with:

Post in thread 'Maladaptive Daydreaming and Dissociation. Cortisol Response? HPA Axis Dysfunction?' Maladaptive Daydreaming and Dissociation. Cortisol Response? HPA Axis Dysfunction?

Cholinergic receptors are not the only ones that affect the lower esophageal sphincter. Histamine receptors do as well and likely others. Antagonising receptors leads to upregulation not downregulation.

 

[Tidal]

No. Though there are multiple pharmaceuticals that can enhance its activity. POTS is more related to low blood volume. I will link a post a made in a thread earlier about possible options to experiment with:

Post in thread 'Maladaptive Daydreaming and Dissociation. Cortisol Response? HPA Axis Dysfunction?' Maladaptive Daydreaming and Dissociation. Cortisol Response? HPA Axis Dysfunction?

Cholinergic receptors are not the only ones that affect the lower esophageal sphincter. Histamine receptors do as well and likely others. Antagonising receptors leads to upregulation not downregulation.

Thanks. I'm never going to touch another antidepressant again after this though and I don't have access to ADHD drugs(even though I have ADHD). I did take one pill of reboxetine in the past which made me catatonic for half a day. But this was before I had POTS though not before I had other things going on like anhedonia.

I take it that things which improve blood flow won't help POTS? Or nitric oxide. I really don't know how taking 25mg nortriptyline can do this- not even high dose amitriptyline caused dysautonomia although it did other things.

I'm confused when it comes to muscarinic receptors. I present with anticholinergic symptoms yet have excess saliva now. But I think GERD might be causing excess saliva, not sure. It's worth noting galantamine, catuaba bark and uridine give me myoclonus.

So is it possible I perhaps have lots of acetylcholine that won't bind with it's receptors?

I have also tried taking things which increase histamine like kutaj and supplements to increase DAO.

So I am thinking but not certain that I need to upregulate muscarinic receptors. However I don't know if this will impact the fatigue/dysautonomia.

I'm thinking of trying honokiol which reduces intracellular calcium and might affect muscarinic receptors by increasing binding

 

[redsun]

Thanks. I'm never going to touch another antidepressant again after this though and I don't have access to ADHD drugs(even though I have ADHD). I did take one pill of reboxetine in the past which made me catatonic for half a day. But this was before I had POTS though not before I had other things going on like anhedonia.

I take it that things which improve blood flow won't help POTS? Or nitric oxide. I really don't know how taking 25mg nortriptyline can do this- not even high dose amitriptyline caused dysautonomia although it did other things.

I'm confused when it comes to muscarinic receptors. I present with anticholinergic symptoms yet have excess saliva now. But I think GERD might be causing excess saliva, not sure. It's worth noting galantamine, catuaba bark and uridine give me myoclonus.

So is it possible I perhaps have lots of acetylcholine that won't bind with it's receptors?

I have also tried taking things which increase histamine like kutaj and supplements to increase DAO.

So I am thinking but not certain that I need to upregulate muscarinic receptors. However I don't know if this will impact the fatigue/dysautonomia.

I'm thinking of trying honokiol which reduces intracellular calcium and might affect muscarinic receptors by increasing binding

The receptors that secrete saliva are muscarinic receptors. Nortryptyline is a muscarinic antagonist, so logically it would make sense for it to lead to upregulation of muscarinic activity, not downregulation.

Usually improving blood volume and improving blood pressure if it is low improves POTS symptoms. So getting plenty of salt and water tends to improve blood volume and blood pressure. If you never experimented with iodine, that may improve catecholamine function. This is brings me back to the issue of trying to get way too specific. If you just understood what it was exactly, then you can fix it. But this is not always true unfortunately. It may not be all due to neurotransmitters and their receptors. It can be due to other issues that may or may not be due to the drug itself but could have developed during the time you used the drug which can give the impression the drug itself caused it. I am not saying the drug didnt affect you. Clearly it did, but I don't know of a solution that doesnt involve another drug to agonize or antagonize receptors which is just a bandaid in the end and may just cause a new problem.

This is why you try to look at the body's function as a whole. I know you have tested hormones and neurotransmitters in the past but if you have never gotten CBC, iron panel, serum copper/ceruloplasmin, plasma zinc, thyroid panel, CMP to test your kidney, liver function, and other basic tests like this it would also be good to look into.

 

[Strelok]

 

[Tidal]

The receptors that secrete saliva are muscarinic receptors. Nortryptyline is a muscarinic antagonist, so logically it would make sense for it to lead to upregulation of muscarinic activity, not downregulation.

Usually improving blood volume and improving blood pressure if it is low improves POTS symptoms. So getting plenty of salt and water tends to improve blood volume and blood pressure. If you never experimented with iodine, that may improve catecholamine function. This is brings me back to the issue of trying to get way too specific. If you just understood what it was exactly, then you can fix it. But this is not always true unfortunately. It may not be all due to neurotransmitters and their receptors. It can be due to other issues that may or may not be due to the drug itself but could have developed during the time you used the drug which can give the impression the drug itself caused it. I am not saying the drug didnt affect you. Clearly it did, but I don't know of a solution that doesnt involve another drug to agonize or antagonize receptors which is just a bandaid in the end and may just cause a new problem.

This is why you try to look at the body's function as a whole. I know you have tested hormones and neurotransmitters in the past but if you have never gotten CBC, iron panel, serum copper/ceruloplasmin, plasma zinc, thyroid panel, CMP to test your kidney, liver function, and other basic tests like this it would also be good to look into.

Sorry, don't wish to confuse things but the excess saliva occured afterwards when taking inositol which complicated things and caused GERD/cognitive problems.

I've tested all those things and took lots of zinc and copper etc.

For me it has to be to do with certain receptors not functioning properly.

I likely had muscarinic upregulation before from coming off amitriptyline and it caused nausea and a window of relief from anhedonia which I also have. But it also made me feel lighter and have more energy.

Although my fatigue back then was weaker than that caused by taking nortriptyline afterwards. The nortriptyline induced fatigue just makes me feel so heavy and is almost like a partial paralysis

 

[Tidal]

As I said I've taken lots of ttfd. Thiamine just seems to have no effect on me and I wish it wasn't the case.

Currently taking benfotiamine but I don't think it will do anything

 

[Ben.]

As I said I've taken lots of ttfd. Thiamine just seems to have no effect on me and I wish it wasn't the case.

Currently taking benfotiamine but I don't think it will do anything

For some people it only seems to make a positive effect when enough magnesium, potassium and manganese is taken. and maybe b2

 

[Strelok]

As I said I've taken lots of ttfd. Thiamine just seems to have no effect on me and I wish it wasn't the case.

Currently taking benfotiamine but I don't think it will do anything

Have you tried increasing your glutathione status at the same time you're taking TTFD? E.g. selenium, glycine and NAC combination. Then make sure you have adequate levels of the other B vitamins, along with magnesium.

 

[Tidal]

Have you tried increasing your glutathione status at the same time you're taking TTFD? E.g. selenium, glycine and NAC combination. Then make sure you have adequate levels of the other B vitamins, along with magnesium.

I've took a lot of NAC before and magnesium and took it with multivitamin.

I don't think thiamine is enough to help me