Transmitters are out of whack

[HABS93]

Generally I've always had a strong mind when it comes to overcoming challenges. Before this illness working long hours I always found a way to be the leader . Come out feeling like a warrior even when I was sore. It would feel good to be sore and tired after a good days work.

Now this fatigue and emotional numbness came into play. No quite the same chronic fatigue as some people . As mine derived from drug use after cessation. My family thinks I'm lazy even though I'm back to working full time. I can't make friends because I'm so tired and eye glitches. It feels like every corner something not that great is about to happen. Suicidal thoughts are definitely not how my mind works but they have entered my brain. I can't do SSRIs because I can't work on them

 

[Float]

HI there. Sorry you are having a bad time
I'm not sure what you mean by drug use after cessation?
But what I always keep in mind, is that everything changes. Evenot if a circumstance doesn't change, perspective can.
Life can seem very unfair and full of disappointments. And the sad thing is that life will always throw more at us.
I find it useful to study Buddhism and advaita vedanta. Maybe there is something you can turn to ? Art , books , church?
Everybody had suicidal thoughts at times, they are not that unusual, but of course it's always a good idea to tell your doctor . And have an honest chat with a family member or friend or even someone at the end of a helpline.
Wishing you well.

 

[Wishful]

ME definitely hampers my ability to deal with challenges. I can do tasks if they're really important, but if they're not important, it's really hard to work up the energy to attempt them. Minor setbacks, such as not having the right tools on hand make me want to give up right then. It's not fatigue, it's a lack of motivation, which I assume is due to the brain not working how it should.

As for suicidal moods, for me it was induced by niacin, tryptophan, and, at least during one period, B12. It was a huge relief to realize that my thoughts of suicide were chemically induced. You might want to keep a food/activity/symptoms journal to see if you can find something that is triggering those moods.

 

[BeADocToGoTo1]

Sorry you are going through this. I had to tackle fatigue, emotional numbness, depression, suicidal thoughts in a two-pronged approach.

1. Physical - In my case, the most important cause of these symptoms by far. I had to stop any insults to the body I had control over and supply the body with the necessary nutrients. I was not breaking down and absorbing food properly (EPI, SIBO, Candida, etc.) so needed extra help. Nutrient imbalances and microbiome imbalances have a tremendous impact on these symptoms. Have you had any nutritional type of tests done, such as Genova FMV or Great Plains OAT? Have you tested for Candida overgrowth or SIBO? Also take a hard and honest look at the quality of your food, water, beverage intake. I always thought I lived cleanly and ate healthily, but it turns out that I (and my doctors) had to learn a lot. SSRIs were a no go for me as well and they are more to attack symptoms, not root causes. Amino acid therapy, vitamins and minerals were a much better solution in my case, so that my body could have the building blocks to produce enough neurotransmitters. Many people, including psychiatrists, are not familar nor aware of amino acid therapy, and how metabolic pathways effect neurotransmitters and subsequent mood swings, depression, apathy, etc.

2. Mental - Using e.g. meditation, visualization techniques, therapist sessions, relaxation techniques, yoga, etc. the stress of illness itself, both physically and emotionally can also cause an extra demand on neurotransmitters, and thus deplete them more quickly than normal.

 

[Judee]

Please hang in there. If you are as young as your picture appears you still could experience some kind of spontaneous remission especially as I think you said this all began recently. Some have gotten better in the first few years of the illness. I do think you improve your chances though by learning aggressive rest therapy.

I've recently been learning to track my HRV as shown in this article: https://www.healthrising.org/forums...sting-could-help-you-improve-your-health.353/

It's really amazing to see how it reacts to our push-crash cycles. The author also said it helped to make more sense of the disease to her husband too to see an objective measurement of what was going on everyday.

I'm still getting the hang of it and the apps are geared more towards athletics which can be frustrating but the needle still does move on the graph significantly on the days when I'm really struggling.

I agree with @Wishful that it helps to realize that a lot of suicidal thoughts are biologically based and to find those things that are setting that off in you.

I also think that you are mourning the life you had. It can be so hard to give up those things. It sounds like perhaps because you are such a warrior, it's hard for you to "lay low" for a while. The only thing I can suggest is to picture yourself in some type of holding pattern. That doesn't mean that it's going to stay this way forever especially since I think researchers are making some headway in figuring all this out. On that thought, it helps me to remind myself that "Yeah, it stinks but it is what it is for now." Somehow that helps me to stop my thoughts from spiraling down continually.

One more thing that is helping me is another patient's site called cfsremission.com. So much of what is going on is connected to the "brain" in our gut.

 

[PatJ]

I've found several ways to stabilize my weird ME/CFS mood swings:
* MethylB12
* Raising low potassium. My potassium has severely dropped a few times when taking licorice. High potassium food didn't help, only potassium gluconate worked to quickly relieve symptoms.
* Whey protein. This really helps with keeping my mood more stable. I think I also have serious malabsorption problems so the whey protein is giving me easy to digest protein and balanced amino acids.
* Lithium orotate sometimes helps, sometimes makes me irritable.
* Teas or supplements that contain nervine herbs, such as kava kava, valerian, skullcap, lobelia, etc. can be very calming.

The microbiome in your gut can seriously influence your mood. Sometimes probiotic foods or supplements can help.

I haven't read it, but a book, and associated website, called "The Mood Cure" by Julia Ross is supposed to be a good resource about how bodily imbalances affect mood, and what to do about it. Another one is "The Ultra-mind Solution" by Mark Hyman.

 

[BeADocToGoTo1]

...* Raising low potassium. My potassium has severely dropped a few times when taking licorice. High potassium food didn't help, only potassium gluconate worked to quickly relieve symptoms.

Hi PatJ,

A little side note on licorice and potassium. I also found out the hard way that consumption of black licorice can lead to low potassium levels (hypokalemia). Licorice root contains glycyrrhizic acid which inhibits an enzyme in the body that can result in a drop in potassium, an increase in sodium level, and high blood pressure. This impacts the electrical signaling of the heart, and can cause heart issues such as palpitations and premature ventricular contractions.

 

[HABS93]

Sorry you are going through this. I had to tackle fatigue, emotional numbness, depression, suicidal thoughts in a two-pronged approach.

1. Physical - In my case, the most important cause of these symptoms by far. I had to stop any insults to the body I had control over and supply the body with the necessary nutrients. I was not breaking down and absorbing food properly (EPI, SIBO, Candida, etc.) so needed extra help. Nutrient imbalances and microbiome imbalances have a tremendous impact on these symptoms. Have you had any nutritional type of tests done, such as Genova FMV or Great Plains OAT? Have you tested for Candida overgrowth or SIBO? Also take a hard and honest look at the quality of your food, water, beverage intake. I always thought I lived cleanly and ate healthily, but it turns out that I (and my doctors) had to learn a lot. SSRIs were a no go for me as well and they are more to attack symptoms, not root causes. Amino acid therapy, vitamins and minerals were a much better solution in my case, so that my body could have the building blocks to produce enough neurotransmitters. Many people, including psychiatrists, are not familar are not aware of amino acid therapy, and how metabolic pathways effect neurotransmitters and subsequent mood swings, depression, apathy, etc.

2. Mental - Using e.g. meditation, visualization techniques, therapist sessions, relaxation techniques, yoga, etc. the stress of illness itself, both physically and emotionally can also cause an extra demand on neurotransmitters, and thus deplete them more quickly than normal.

@BeADocToGoTo1 Thank you for taking the time to listen and respond. I've been struggling with food. My doctor and I don't really get along since he only sees me taking SSRIs and thinks everything is in my head . Although I've thought something weird with my stomach bacteria but never got it tested for anything. Only a cat scan of my stomach area in which the doctor said it was fine. I take magneisum malate and threonate and try to take a multi vitamin. B12 gives me heart palpitations . What test were you thinking of ??

 

[BeADocToGoTo1]

@BeADocToGoTo1 Thank you for taking the time to listen and respond. I've been struggling with food. My doctor and I don't really get along since he only sees me taking SSRIs and thinks everything is in my head . Although I've thought something weird with my stomach bacteria but never got it tested for anything. Only a cat scan of my stomach area in which the doctor said it was fine. I take magneisum malate and threonate and try to take a multi vitamin. B12 gives me heart palpitations . What test were you thinking of ??

It is rough when the sickcare system is setup so that doctors do not have the necessary time to delve into root cause analysis and have 10 minutes to write a prescription for the symptoms. Food quality, water quality and microbiome dysbiosis gets you into a vicious cycle. I have a section dedicated to food, water, and microbiome rebalancing with all the steps I took to rebalance, as it does require a combination of determination, temporary strict diet, supplements, medicine, etc. In terms of diet, you can also have a look at, for example, Dr Weil or Mark Sissons Primal Blueprint for some more guidelines.

Here are a few tests you can look into:

1. Genova Diagnostics - FMV - Gives a great overall picture of nutrient deficiencies, neurotransmitter metabolites, microbiome dysbiosis, pancreatic enzyme issues, and many more. Biochemistry and metabolomics in practice. This test should be standard for all primary care and family practice doctors as a regular preventative maintenance test, and for anything chronic or hard to diagnose. Great Plains Laboratories has similar tests.

2. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.

3. Small intestinal bacterial overgrowth (SIBO) breath test, for example, Commonwealth Diagnostics International. But the first one will also provide you with SIBO indicators.

But also look at HbA1c as a quick, standard indicator of excess sugar intake. 5.2% or lower is what I strive for.

This thread might also have more info:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

Contact me any time if you have questions. Please don't feel discouraged by the lack of help from your doctor. It might be an idea to find a good functional/integrative medicine doctor in your area as well, as they are more experienced with taking a comprehensive approach to healing.

 

[pamojja]

Although I've thought something weird with my stomach bacteria but never got it tested for anything. Only a cat scan of my stomach area in which the doctor said it was fine.

Really every bodily system can go off and contribute. The most important is to get copies of all lab tests and learn to interpret it yourself. One thing docs never learn is to look for suboptimal values in labs and checking for their causes. They only react, if something is much too far off, and where one could have done already much to never let it get that far.

Most important are complete blood count, glucose metabolism, liver enzymes, kidney function, tyroid (esp. fT3, antibodies), hormones, electrolytes, which are most done routinely if something is off. But rarely reacted to. You could ask for past lab-results too. To get an idea in which way they changed over time.

I'm sure others will comment on lab-tests usually not covered by insurance.

 

[HABS93]

It is rough when the sickcare system is setup so that doctors do not have the necessary time to delve into root cause analysis and have 10 minutes to write a prescription for the symptoms. Food quality, water quality and microbiome dysbiosis gets you into a vicious cycle. I have a chapter dedicated to food, water, and microbiome rebalancing with all the steps I took to rebalance, as it does require a combination of determination, temporary strict diet, supplements, medicine, etc. In terms of diet, you can also have a look at, for example, Dr Weil or Mark Sissons Primal Blueprint for some more guidelines.

Here are a few tests you can look into:

1. Genova Diagnostics - FMV - Gives a great overall picture of nutrient deficiencies, neurotransmitter metabolites, microbiome dysbiosis, pancreatic enzyme issues, and many more. Biochemistry and metabolomics in practice. This test should be standard for all primary care and family practice doctors as a regular preventative maintenance test, and for anything chronic or hard to diagnose. Great Plains Laboratories has similar tests.

2. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.

3. Small intestinal bacterial overgrowth (SIBO) breath test, for example, Commonwealth Diagnostics International. But the first one will also provide you with SIBO indicators.

But also look at HbA1c as a quick, standard indicator of excess sugar intake. 5.2% or lower is what I strive for.

This thread might also have more info:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

Contact me any time if you have questions. Please don't feel discouraged by the lack of help from your doctor. It might be an idea to find a good functional/integrative medicine doctor in your area as well, as they are more experienced with taking a comprehensive approach to healing.

@BeADocToGoTo1 I'm going to read in dept your story in that link you showed me. At break I'm just getting to work right now. This is the 1200$ test that looks for everything in your body to figure out if something is less then ideal ? I love at home as I moved back (Im 25) home to quit drugs and become a better person. This was 10 months ago. I can say I'm sober now. The food I eat I don't have control over for dinner because my parents make it. If it requires a strict diet in just going to have to learn . I make 1200$ roughly every two weeks. I did go to a naturopath that cost 200$ per session and all she did was tell me to eat a paleo diet so I never went back.

 

[Rufous McKinney]

One more thing that is helping me is another patient's site called cfsremission.com. So much of what is going on is connected to the "brain" in our gut.

I have huge issues with the gut running the show, the gut with its own opinions, the gut that decides while I am sound asleep that its not going to cooperate with that plan. Gut generated organ failure level pain for two weeks prior to a scheduled dental surgery. The surgery was cancelled. Organ failure ceased. It was remarkable to witness.

I sortta leave this body at times; float over there into a corner and observe how ridiculous this is. The bottom line here is very very real serious things are wrong in this body, and what i think about it can make it worse. And I have to work on the whole shebang.

 

[BeADocToGoTo1]

@BeADocToGoTo1 I'm going to read in dept your story in that link you showed me. At break I'm just getting to work right now. This is the 1200$ test that looks for everything in your body to figure out if something is less then ideal ? I love at home as I moved back (Im 25) home to quit drugs and become a better person. This was 10 months ago. I can say I'm sober now. The food I eat I don't have control over for dinner because my parents make it. If it requires a strict diet in just going to have to learn . I make 1200$ roughly every two weeks. I did go to a naturopath that cost 200$ per session and all she did was tell me to eat a paleo diet so I never went back.

Congrats, that is a great accomplishment. And the fact that you are here and taking charge of your own health is huge!

The price of the test is more than double what I paid for it last time for the Genova test, and that was expensive already. Some insurances may even cover it, so that is worthwhile checking. Attached is an older fee schedule that I could find. Regarding food and drink, it is crucial for your continued improvement, so consider either taking control of your own food purchasing and cooking or asking your parents for support in the matter. When money is tight you could try the dietary route for a few months first and see if you feel improvements, as opposed to spending it on an expensive test.

Lots of free info here to get you started:

https://www.marksdailyapple.com/

https://www.marksdailyapple.com/primal-blueprint-101/

 

[HABS93]

Thank you. Thank everyone on this community because I'm learning lots of info. It's just even when I do eat a meal like cooked chicken with veggies and rice usually 1200 calories meal and healthy like two hours later I get hungry. I'm never satisfied so it's hard to find I only way 150, my metabolism is extremely fast . I wasn't this hungry when I smoked weed everyday so I find it odd that I gained a intense hunger after quitting drugs. I haven't eaten poorly though. I have a smoothie drink that has 22 g iof protein and 9 cups of veggies in it with a amino acid profile

 

[HABS93]

These test are insanely pricey . I'd have to know what test would be worth trying for. The only symptom that I don't understand is seems my eyes like twitch when super focused and causes a intense feeling like my eyes can't handle processing fast . Smoking weed causes it to be 10x worse . I cannot find anything about it at all

 

[PatJ]

Licorice root contains glycyrrhizic acid which inhibits an enzyme in the body that can result in a drop in potassium

So DGL licorice should avoid this problem. Licorice root is useful for soothing, and/or promoting healing of the intestinal lining so it's nice to know that DGL should be an option.

I'm surprised you found licorice candy (I think that's what you meant when said 'black licorice') that used real licorice. Most use fennel or anise to provide the licorice flavor without the potential side effects of real licorice.

The only symptom that I don't understand is seems my eyes like twitch when super focused and causes a intense feeling like my eyes can't handle processing fast .

That sounds like nystagmus. It used to happen to me quite often when reading but doesn't anymore, I don't know what changed to resolve the problem.

 

[BeADocToGoTo1]

Thank you. Thank everyone on this community because I'm learning lots of info. It's just even when I do eat a meal like cooked chicken with veggies and rice usually 1200 calories meal and healthy like two hours later I get hungry. I'm never satisfied so it's hard to find I only way 150, my metabolism is extremely fast . I wasn't this hungry when I smoked weed everyday so I find it odd that I gained a intense hunger after quitting drugs. I haven't eaten poorly though. I have a smoothie drink that has 22 g iof protein and 9 cups of veggies in it with a amino acid profile

Don't forget to add healthy fats. Perhaps add some olive oil, sardines, avocado, whole eggs, full fat fermented plain organic yoghurt, or some nuts and seeds.

 

[HABS93]

So DGL licorice should avoid this problem. Licorice root is useful for soothing, and/or promoting healing of the intestinal lining so it's nice to know that DGL should be an option.

I'm surprised you found licorice candy (I think that's what you meant when said 'black licorice') that used real licorice. Most use fennel or anise to provide the licorice flavor without the potential side effects of real licorice.



That sounds like nystagmus. It used to happen to me quite often when reading but doesn't anymore, I don't know what changed to resolve the problem.

@PatJ Definitely sounds really similar. I don't know if it was damage from drug use back then or what but it happened directly after quitting . If I smoke weed it makes it worse until I become less high. I thought it was directly related to my fatigue

 

[PatJ]

It's just even when I do eat a meal like cooked chicken with veggies and rice usually 1200 calories meal and healthy like two hours later I get hungry. I'm never satisfied so it's hard to find I only way 150, my metabolism is extremely fast . I wasn't this hungry when I smoked weed everyday so I find it odd that I gained a intense hunger after quitting drugs.

This comment from another poster here on PR might be relevant:

From kangaSue on PR:
[Insatiable or very frequent hunger can be caused by] leptin resistance. Leptin is your satiety hormone so a leptin-resistant person always feels hungry and can be prone to overeat.

Seen more in obesity but you can develop this from constantly going on diets too, something which can be mimicked by gut dysmotility problems where you constantly alter your normal food intake to reduce symptoms so you might eat a little for a few days then try to eat a bit more to compensate for the lost calories or even just return to your normal intake.

 

[Judee]

The Mood Cure book recommends treating out of whack neurotransmitters with amino acid supplements but I don't recommend that. Our ME/CFS bodies are very sensitive to such high doses, I think. (At least that is what I experienced when I tried the author's suggestions.)

I am wondering if the extreme hunger may be your body trying to make up for the lack of something like aminos. I think rather than trying supplements you could try to get your amino acids from quality food such as healthy proteins. I've read that lamb has all the amino acids.

Costco, if you know someone with a membership sells wonderful lamb chops for about $6.99/lb from Australia--so no antibiotics, etc. That's the other thing--if you can, only get meats w/o antibiotics.

Of course, there are other forms of protein than lamb but I think it would be best to stick to the food forms. This way you may be able to rebalance your neurotransmitters in a gentle way.

It's funny because I was thinking about this last night and then just a while ago saw there was this article on @Lassesen website where someone else was wondering if her improvement was because of food balancing her neurotransmitters.