Blacking out

[haidut]

post 102107 Ok.

I'm still looking to find out if that Makes Casein would be optimal?

What should I consume each day to assure nutrient assimilation and get enough calories. I also do not want to lose anymore weight.

I would stick to the aminos until you feel some relief. They are supposed to be pretty good in helping even pretty sick people put on muscle weight. The better your body composition becomes the better metabolism will be as well. Just make sure you take them with some carbs as another post warned they are very "good" at raising insulin and giving people hypoglycemia. Nothing wrong with that, all protein does the same if consumed without enough carbs.

 

[iLoveSugar]

Will do. Just spoonfulls of sugar? OJ?

post 102124 Does no one else think this might be an autonomic disorder? The fatigue, dizziness, blacking out, reflux, asthenia, stomach issues and chronic GI disturbances.

What do you do for this?

 

[iLoveSugar]

Signs and symptoms
The symptoms of dysautonomia are numerous and vary widely from person to person depending on the nerves affected and underlying cause. Symptoms often develop gradually over years. Each patient with dysautonomia is different—some are affected only mildly, while others are often left disabled.

The primary symptoms present in patients with dysautonomia include:

Excessive fatigue
Excessive thirst (polydipsia)
Lightheadedness or dizziness, often associated with orthostatic hypotension (abnormally low blood pressure on standing), sometimes resulting in syncope (fainting)
Rapid heart rate or slow heart rate
Blood pressure fluctuations
Difficulty with breathing or swallowing
Shortness of breath with activity or exercise
Distension of the abdomen
Mydriasis (abnormal dilation of the pupils) leading to blurry vision
Urinary incontinence or neurogenic bladder dysfunction
Gastroparesis (delayed gastric emptying) with associated nausea, acid reflux and vomiting
Constipation
Excessive sweating or lack of sweating (anhydrosis)
Heat intolerance brought on with activity and exercise
Sexual problems including erectile dysfunction in men and vaginal dryness and orgasmic difficulties in women



The above is me with about 75 symptoms not on this list.

 

[iLoveSugar]

After a google search of Ray Peat and dysautonomia and a search on here for that word, literally NOTHING pops up.

 

[tara]

post 102096 Why does everyone think I am not digesting good? I only have diahrrea if heavy laxative use hits me hard.

post 54402 Yeah, I have been gluten-free for about six years. I have also got the diagnosis Crohn's disease, and also rid of ulcerative colitis. I am way more constipated than anything.

post 51597 I should clarify though, the pain is location below my lowest rib and left side (and lower) mostly. I guess this is consistent with IBS spasms and intestine swelling, but maybe it is something else.

post 51575 I have had any endoscopes and colonoscopies. The endoscopy has showed esophagitis, hiatal hernia, etc. Heartburn isn't as big as my other issues though.

 

[messtafarian]

Dysautonomia is a problem with the nervous system. This is why a few weeks back I suggested taking pyridostigmine, which is over the counter in France. It is not a Peat thing because it increases acetylcholine, but if your nervous system is not communicating well with your gut then the motility problem will continue to be an issue. What's happening with your stomach could be gastroparesis, which is another nervous system problem. These are all very common with Lyme.

A neurologist can do autonomic testing. Peat would say that thyroid is key and I believe that's true of course, but if your vagus nerve is in trouble you might need a more direct temporary answer. Clonidine might also help.

 

[iLoveSugar]

Clonidine is on it's way, and I see a Chiropractic Neurologist on Monday. Maybe he will know more?

 

[tara]

post 102284 and I see a Chiropractic Neurologist on Monday. Maybe he will know more?

Worth asking if he has experience - especially successful experience - with manipulations to correct hiatial hernias. And if he has knowledge in this area, ask if he recommends any exercises you can do for this yourself, too. I don't assume this is the source of all your problems, but it wouldn't surprise me if you would have a better chance of reducing your distress if you can solve this part of it.
As well as finding out whatever else he thinks might be going on, and what he suggests to do.

Good luck.

 

[Blossom]

https://www.google.com/url?q=http://ray ... 86mU4z2VvA
Search 'nerves' on Peat's site. This is the first article I found and it's about autonomic dysfunction.

 

[iLoveSugar]

My email transcript from tonight with RP:

Me: For people with dysutonomia, automic disorders, etc, what is usually the culprit behind this?

RP: Toxins, trauma, virus, and hypothyroidism.

Me: So if I visit these one by one, I will try to knock things out. I am trying my best to troubleshoot, and am meeting with a functional neurologist next week to try and do some hands on work with me as well.

Toxins-- Can you elaborate a bit? I have taken rounds of antibiotics, lots of charcoal, carrot salads, bamboo shoots. Anything else to treat? Any reliable testing that could help with this?

Trauma-- I did have bad bowel issues in school, uncontrollable gas, etc, that ended up causing me to drop out of school. I don't think it was much more than typical IBS though. However, for many years, I always avoided bad situations and had to go to the woods, womens bathrooms, etc because I had no time to way. It was urgent. Maybe this effected nerves after so long?

Virus-- Any sure way to tell here? I do have Herpes, EBV, etc. Not sure of other viruses? Good tests to rule things out? Fixes?

Hypothyrodism-- I am sure I have it, but no food or medicine has helped me here. Maybe something is interferring with it?

RP: Have you titrated the dose of thyroid by objective indications, such as resting pulse rate, waking temperature, or calorie use?

Me:
I haven't gone past 2 grains (1 cyonplus tablet), because I am struggling bad to get nutrition in. I'm not hungry or thirsty, and from my understanding, adding fuel to the fire, without adding nutrients is a recipe for disaster. Yeah? My stress hormones seem very high as I am constantly in a bad state. Waking pulse is 55-60, and waking temp is around 96.5. Calorie use is very low unless I start adding to an already full stomach. Today I had a few bites of Parmesan Reggiano cheese, about 5 cups of milk, with 5 oz of coffee, and 6 tbsp sugar.

 

[messtafarian]

He's asking you about thyroid because in theory a healthy metabolism will manage all those things -- toxin trauma virus. It's true and I believe it. The more energy we give cells the more likely they are to behave the way they are supposed to and recover damage on their own. But without nutrition -- in the case of gastroparesis for example -- your body doesn't have anything for the thyroid to work with except to keep dipping into tissue stores.

The reason I think clonidine will help is because it does something to balance the sympathetic/parasympathic systems. As far as thyroid goes it's a good *theory* but if you don't have good, recent thyroid values it's hard to know what it's really accomplishing. Getting cortisol and adrenaline down can only help.

When you talk to this neurologist tell him that you think you have dysautonomia and especially gastroparesis. I think I remember also that you said you have some orthostatic hypertension? You have a racing heart, panic attacks when you stand up as I recall?

I am really puzzled as to why there are so many people out there with nervous system problems and terrible guts who keep getting scopes without ever hearing the suggestion that they should be looking at autonomic testing after thousands of mechanical investigations and years and years of misery. What I would really like to see happen for you is parenteral nutrition for just a *little while* so you and your gut can recover some function. I know that's not possible right now and maybe a doctor would have a different idea -- but I think if the gut is not inflamed; if the nervous system can calm down and get a chance to start working correctly again you've got a good chance to recover. Once there is some better nervous communication thyroid should work a charm.

Haidut's suggestion about MAP aminos might be useful also.

ILS I just want to say I'm really proud of you. It is really really hard to navigate this stuff and you're just not giving up. Keep going, it's gonna get better.

 

[iLoveSugar]

post 102298 He's asking you about thyroid because in theory a healthy metabolism will manage all those things -- toxin trauma virus. It's true and I believe it. The more energy we give cells the more likely they are to behave the way they are supposed to and recover damage on their own. But without nutrition -- in the case of gastroparesis for example -- your body doesn't have anything for the thyroid to work with except to keep dipping into tissue stores.

The reason I think clonidine will help is because it does something to balance the sympathetic/parasympathic systems. As far as thyroid goes it's a good *theory* but if you don't have good, recent thyroid values it's hard to know what it's really accomplishing. Getting cortisol and adrenaline down can only help.

When you talk to this neurologist tell him that you think you have dysautonomia and especially gastroparesis. I think I remember also that you said you have some orthostatic hypertension? You have a racing heart, panic attacks when you stand up as I recall?

I am really puzzled as to why there are so many people out there with nervous system problems and terrible guts who keep getting scopes without ever hearing the suggestion that they should be looking at autonomic testing after thousands of mechanical investigations and years and years of misery. What I would really like to see happen for you is parenteral nutrition for just a *little while* so you and your gut can recover some function. I know that's not possible right now and maybe a doctor would have a different idea -- but I think if the gut is not inflamed; if the nervous system can calm down and get a chance to start working correctly again you've got a good chance to recover. Once there is some better nervous communication thyroid should work a charm.

Haidut's suggestion about MAP aminos might be useful also.

ILS I just want to say I'm really proud of you. It is really really hard to navigate this stuff and you're just not giving up. Keep going, it's gonna get better.

Thanks a bunch for the kind words. The clonidine is on it's way, but it kind of scares me that most people experience considerable drowsiness with this. That's already a terrible symptom for me not on anything. I am getting my thyroid tested again, but my labs are usually good. According to RP though, they aren't as good to go by as temps/pulse/reflexes/symptoms. It's a no win situation. I will mention this to the doc on Monday regarding the dysautonomia. I don't have hypertension per se, except when anxiety gets bad.

I'm remaining hopeful I can get help. I will get this protein per that link. What carbs should I use? I really don't want to keep losing weight.

 

[messtafarian]

post 102301
Thanks a bunch for the kind words. The clonidine is on it's way, but it kind of scares me that most people experience considerable drowsiness with this. That's already a terrible symptom for me not on anything. I am getting my thyroid tested again, but my labs are usually good. According to RP though, they aren't as good to go by as temps/pulse/reflexes/symptoms. It's a no win situation. I will mention this to the doc on Monday regarding the dysautonomia. I don't have hypertension per se, except when anxiety gets bad.

I'm remaining hopeful I can get help. I will get this protein per that link. What carbs should I use? I really don't want to keep losing weight.

Why don't you try honey? That will go straight into you and there's really practically nothing to digest. Good gingerale with sugar -- anything that's easy on the stomach and not reactive.

I was also thinking about my rice and butter experiment. Fats offer lots of calories. If you can digest fats butter works for very sick people and brings in a lot of calories without taking up much room -- the fat coat the stomach, the butyrate feeds the intestines -- I found it really soothing. This is a completely unscientific suggestion but it worked for me. Kerrygold Irish butter and rice Krispies -- which are about as low residue as you can get and a cheap vitamin besides. There is iron in all commercial cereals so if you're worried about that there's organic puffed rice too.

 

[tara]

post 102298 When you talk to this neurologist tell him that you think you have dysautonomia and especially gastroparesis.

It does seem relevant to consider the nervous system involvement.
Gastroparesis is a specific measurable thing - though don't know if one needs an expert to test this, or can tell oneself.

If there is neurological system involvement, how do you figure out which is the chicken and which is the egg? Chronic stress can mess with the autonomic nervous system in several ways. Couldn't chronic digestive distress and/or malnourishment do that? When in distress, it seems sensible to be kind to the autonomic system in whatever ways one can figure out, either way?

What use do you expect there to be in getting a diagnostic label like dysautonomia? It seems to describe a loosish set of symptoms associated with the SNS and PNS, rather than a specific disease in itself, with disparate causes and treatments. It seems like another one of those loose collective descriptions of syndromes of not being well, like chronic fatigue, or schizophrenia, or depression, just more focussed on the ANS?

 

[tara]

post 102306
I was also thinking about my rice and butter experiment. Fats offer lots of calories. If you can digest fats butter works for very sick people and brings in a lot of calories without taking up much room -- the fat coat the stomach, the butyrate feeds the intestines -- I found it really soothing.

I reckon this could be worth a try, if you haven't already.

 

[messtafarian]

post 102312

post 102298


If there is neurological system involvement, how do you figure out which is the chicken and which is the egg? Chronic stress can mess with the autonomic nervous system in several ways. Couldn't chronic digestive distress and/or malnourishment do that? When in distress, it seems sensible to be kind to the autonomic system in whatever ways one can figure out, either way?

What use do you expect there to be in getting a diagnostic label like dysautonomia? It seems to describe a loosish set of symptoms associated with the SNS and PNS, rather than a specific disease in itself, with disparate causes and treatments. It seems like another one of those loose collective descriptions of syndromes of not being well, like chronic fatigue, or schizophrenia, or depression, just more focussed on the ANS?

The nervous system is pretty stable. Like Ray said -- toxin trauma virus. Something has to come along and interrupt those connections. As far as its being just a loose connection of symptoms that are not much more concerning than the other conditions you mentioned -- I don't know if I would agree with that. Dysautonomia is by definition a dysfunction in the autonomic system -- heart rate, breathing, digestion, sleep, vascular response, skin reactions, hormonal and organ function, etc. When things like that are damaged they can be hard to put right. People do recover but it takes a lot of longterm nutrition and hormonal support.

 

[tara]

My part in this discussion is somewhat theoretical - may not be very relevant for OP - feel free to skip. :)

post 102319 The nervous system is pretty stable. Like Ray said -- toxin trauma virus. Something has to come along and interrupt those connections. As far as its being just a loose connection of symptoms that are not much more concerning than the other conditions you mentioned -- I don't know if I would agree with that. Dysautonomia is by definition a dysfunction in the autonomic system -- heart rate, breathing, digestion, sleep, vascular response, skin reactions, hormonal and organ function, etc. When things like that are damaged they can be hard to put right. People do recover but it takes a lot of longterm nutrition and hormonal support.

Hi Messtafarian,

It's not that I think the dysfunctions are unimportant - they are. So are the issues that get called chronic fatigue, and depression, etc. It's that I'm not so sure how useful the label is. As I understand it, the autonomic nervous system, including it's infuence on the heart rate, breathing, digestion, sleep, vascular response, skin reactions, hormonal and organ function, etc, can be fairly directly affected by some kinds of stress. I'm thinking in terms of trying to figure out root causes, and what is currently likely to be helpful to improve functioning. If the reason that the ANS is functionally leaning to the sympathetic, and signalling increased heartrate, breathing, etc, is because adrenaline is high, then it would be good to figure out what is causing adrenaline to be high, and addressing that, etc. Gastroparesis and slow gut motility can be caused by inadequate nutition and /or by low CO2 levels (relative hyperventilation). Maybe you could call those mechanisms dyautonomia, but I'm not sure how that adds anything. If I've read right, there is a subset of dyautonomia that is about organic damage to the nervous system. If there is organinc damage, that would probably be useful to know. But many cases are about functional issues, not organic ones, and may right themselves quickly or slowly if the context improves. Ray Peat said toxin, trauma, virus, and hypothyroidism. Low thyroid function could be the root cause. I don't think it would make sense to assume organinc damage just on the basis of dysfynction/dysregulation.

Sometimes knowing the cause doesn't lead to simple remedies, but can often be a useful start for figuring out a way forward.

Hypothetically, if I went to the dr and said I was exhausted all the time and could barely drag myself out of bed to do anything all day, and she said that's because I have Chronic Fatigue Syndrome, it's not that chronic fatigue isn't important - it could be ruining my life - its just that she hasn't told me anything new, she's just used a fancy capitalised term for what I already knew - that I was chronically fatigued. The label doesn't tell me any more about the cause or the mechanisms of the problem. With or without the label, it would make sense to rest and nourish and attend to breathing, and check and address hypothyroid signs, etc.

Dysautonomia seems to be the name of a syndrome - a collection of somewhat idiopathic symptoms - rather than an identifiable disease with it's own clear causes and mechanisms.

It's possible that I am misunderstanding dysautonomia and how it is diagnosed and treated - my knowledge of it is pretty shallow.

How do you see this diagnostic label being helpful? What would anyone know after that diagnosis that they didn't know from hearing the list of symptoms? What information or resources might it bring to bear on assisting with the OP's health?

I think you've been showing caring for OP and made some relevant suggestions - it's good OP has you thinking about him (as well as others here).

 

[iLoveSugar]

I agree that I do have dysutonomia, or symptoms alike, but it's like CFS, Fibro, etc. Basically a classification of symptoms.

I am seeing the doc on Monday for this, and will try to really simplify with butter, rice, honey and perhaps that protein above. I really think getting thyroid medication to work for me is going to be vital at some point. My nerves are a wreck.

On a side note, all the sudden 1/4 - 1/3 tsp of cascara is making me crampy and making me explode.

 

[messtafarian]

Hi Tara:

I think we think the same thing. I just phrase it differently. It's helpful to know what medicine is calling these syndromes lately because we can them aim doctors to give information that's useful.

The nervous system, as I understand it, is extremely regenerative unless there is something stopping the regeneration. In fact part of the problem with demyelinating diseases is that the nerves regenerate too fast and scar up the pathways. Nerves that are damaged will sprout new roots and try to stabilize communication with their endpoints and if the communication becomes stable enough they'll drop the new sprouts -- and if everything goes right in a couple years that damage might not even be detectable, as long as there is enough regenerative energy to accomplish that.

I know something about this because I've done a lot of reading about it.I have POTS and I have no idea how I got it. However getting a diagnosis for POTS takes six years and a trillion dollars while they rule out everything else and punt you from doctor to doctor. The secret answer to nervous system problems is that no one knows what to do about it exactly since the problems aren't easily treatable and tend to resolve on their own -- or not, but either way medicine can't really help unless you want a painkiller. Supportive interventions for POTS are like -- eat more salt, wear compressive garments to help direct blood flow and take beta blockers. It's all whole-body management.

ILS has had Lyme which does affect the nervous system and could be the original insult that created a whole downline of problems. If that's the case then trying to force motility without also working on better nervous communication might either not work or just mess up more things.

 

[iLoveSugar]

So you think this chiro neurologist could really help?