Some significant improvement. What has worked for me...

[radiohfan23]

I'm 40 years old, have had dysautonomia since 27. At times I was completely bed bound and unable to get around beyond a short bathroom trip. Today, I am on my feet for 2-3 miles a day. I go for long walks often, can lift weights again and am able to do most things. Here's what worked:

I no longer take any pharmaceuticals. I ran through the gambit, Florinef, vasopressors, SSRI's, etc. I also tried all sorts of vitamins/supplements over the years. Interestingly enough, stopping this has aided me as well. 

I eventually identified histamine intolerance as a major issue. As I adjusted my diet to remove most histamine producing and releasing foods and started feeling much better. I limit high histamine foods and eliminated histamine releasing foods like citrus (which affects me most). My digestion is vastly improved and I generally feel much cleaner inside (if that makes sense), perpetual rashes on my upper arms are now all but gone. Notably, my inexplicable anxiety is dramatically reduced. The other things I've added to my routine that has helped are consuming pea sprouts daily to boost DAO in my system. I sprout them in a cheap little auto sprouter and add them to a smoothie. When sprouting in the dark they produce DAO, the enzyme which breaks down histamine. They're also refreshing as a snack and can help if I feel a bit of histamine build up in my system.

Lastly, I take 5HTP at night. 50mg with b6 before bed and another if I wake up during the night (which is most nights). I also take ATP fuel from Research Nutritionals. 

As I felt a bit better I started walking. Just in the yard at first, close to the house so I could just sit if needed. Little by little I expanded my range and today I can go well over a mile in a single walk at a fast pace, up steep hills. 

I still have my bad days (mostly when I don't sleep well), but they are fewer and far less severe than before.

All of this centered around identifying and dealing with histamine issues. 

There are so many wonderful people here who have helped me so much over the years. This site is how I confirmed my diagnosis, how I found my first physician. I hope this helps.

 

Joe

 

EDIT: I forgot to include that I take N Acetyl L Cystine. I assume many here already take it, but it has helped a great deal. It's a glutathione aid. Would recommend looking into it. 

Edited December 27, 2021 by radiohfan23
Forgot an important supplement.

[Pistol]

@radiohfan23 - thank you so much for sharing your incredible story of healing! What an encouragement to us! I also have issues with histamine since I always flare when I have allergies or even insect bites ( I must have an intolerance to most insect bites since I swell up really bad when bitten by anything ). I have often thought about trying a low histamine diet but I am already extremely restricted on what I eat. But I will look into it further. 

6 hours ago, radiohfan23 said:

As I felt a bit better I started walking. Just in the yard at first, close to the house so I could just sit if needed. Little by little I expanded my range and today I can go well over a mile in a single walk at a fast pace, up steep hills. 

You are giving me the well needed kick-in-the-butt! I am still reconditioning after several bad illnesses in the fall and currently am only able to walk a few minutes in the yard. I really need to get going more, so I am taking your story as encouragement to walk more! 

[MikeO]

@radiohfan23Good Job Joe! Your story just goes to show that one with dysautonomia can make a difference in their quality of life.

Glad to hear you were able to get off the pharmaceuticals i wish i could and my care team even tried (except for the beta-blocker) but did not have a good outcome. Upside we did find a drug combo that i can tolerate.

11 hours ago, radiohfan23 said:

I eventually identified histamine intolerance as a major issue.

I also have looked at me having some sort of histamine intolerance my PCP even agrees. Certain classes of drugs will even cause me to break out in rashes/hives and wreak havoc on my digestive and respiratory systems. Just like @Pistolinsect bites will cause symptoms. I have noticed that certain foods will set me off as well so by nature i just avoid them like avoiding the bees after being stung enough times. Your progress with a low histamine diet has sparked my interest in looking at this again.

12 hours ago, radiohfan23 said:

Today, I am on my feet for 2-3 miles a day. I go for long walks often, can lift weights again and am able to do most things.

The power of exercise is worth every ounce of effort put into it. I just went thru cardiac rehab. It was a rough start but as i pushed i became more tolerant at getting around. i went from only handling a couple of mins on the treadmill to ending at walking for 40 minutes.

Keep up on the exercise! 

[radiohfan23]

8 hours ago, Pistol said:

@radiohfan23 - thank you so much for sharing your incredible story of healing! What an encouragement to us! I also have issues with histamine since I always flare when I have allergies or even insect bites ( I must have an intolerance to most insect bites since I swell up really bad when bitten by anything ). I have often thought about trying a low histamine diet but I am already extremely restricted on what I eat. But I will look into it further. 

You are giving me the well needed kick-in-the-butt! I am still reconditioning after several bad illnesses in the fall and currently am only able to walk a few minutes in the yard. I really need to get going more, so I am taking your story as encouragement to walk more! 

So glad to hear from you, Pistol! Keep at it. Every step will pay dividends, I promise. Another thing that has helped me I didn't mention was gardening. I saw that in your profile and can't believe I forgot to include it in my post. I built out a few garden beds last year and it has been wonderful to get out there, get some sun and gentle exercise. Plus the bonus of growing my own has been wonderful.

Take care and feel free to reach out any time! 

[radiohfan23]

3 hours ago, MikeO said:

The power of exercise is worth every ounce of effort put into it. I just went thru cardiac rehab. It was a rough start but as i pushed i became more tolerant at getting around. i went from only handling a couple of mins on the treadmill to ending at walking for 40 minutes.

Keep up on the exercise! 

40 minutes is amazing!

[MTRJ75]

Like @Pistol I've already put so many restrictions on my diet, that I don't know how much further I can go, though I still suspect histamines remain an issue even on an H1 + H2 + mast cell stabilizer. 

Though I have been feeling slightly better when idle, I still run into the same problems with minor activity that made me stop workouts and exercise in the first place. Still a place I can't seem to get past. Thank you for the info and congratulations. 

[MTRJ75]

I've bookmarked this post and keep coming back to it because I feel like there's some sort of roadmap here. You're journey sounds just like mine (and probably most others here) except for the healing part. I think I'm ready to undertake a low histamine diet and I'm going to start looking into DAO enzymes and ways to boost them. 

The problem I'm having, already being AIP Paleo, is that a LHD would severely tighten up my diet even more. Does anyone have a template or meal plan. Or even list of foods that I CAN eat because most things seem to be off the table.

Is it true that you can't eat leftovers on a LHD? I read something about the bacteria buildup in leftovers increase histamines. I rely on leftovers for half my meals. I'm in no condition to be making fresh meals every single day. 

[MikeO]

@MTRJ75i have been avoiding high histamines food. it has helped. Ripe tomatoes are the worst for me. I do tend to graze on left overs and seem to have a uptick in symptoms so i just have been cooking just what i need for a single meal lately. 

[MTRJ75]

Tomatoes are already out on the AIP diet (nightshades). 

The problem with never having leftovers around is that on days I'm not moving around well I either don't eat or only have very poor choices available. 

[Pistol]

13 hours ago, MTRJ75 said:

Is it true that you can't eat leftovers on a LHD? I read something about the bacteria buildup in leftovers increase histamines. I rely on leftovers for half my meals. I'm in no condition to be making fresh meals every single day. 

@MTRJ75 - I also dont have the energy to cook everyday, so when I do cook I freeze the leftovers right away. This way there are always homecooked meals available that only need defrosting. I have learned that once we have to cook we might as well cook more - it takes the same amount of time! Especially if you utilize slow cookers or instapots etc.

 

11 hours ago, MTRJ75 said:

Tomatoes are already out on the AIP diet (nightshades). 

My allergist told me to never eat tomatoes and potatoes in the same day and only every 4 days. 

[MikeO]

14 hours ago, MTRJ75 said:

Does anyone have a template or meal plan. Or even list of foods that I CAN eat because most things seem to be off the table.

This is a little frustrating for me just for the fact when i google low histamine diets nothing seems to come back consistently as to what is what. Still considering going in to see a dietician.   

[MTRJ75]

7 hours ago, MikeO said:

This is a little frustrating for me just for the fact when i google low histamine diets nothing seems to come back consistently as to what is what. Still considering going in to see a dietician.   

I'm finding the same. There doesn't seem to be universal agreement. 

[radiohfan23]

5 minutes ago, MTRJ75 said:

he problem I'm having, already being AIP Paleo, is that a LHD would severely tighten up my diet even more. Does anyone have a template or meal plan. Or even list of foods that I CAN eat because most things seem to be off the table.

Hey! I'd avoid fish, meat, dairy leftovers for sure. But honestly, adding some Vit C, the 5HTP/ L Tyrosine and especially the pea sprouts (I also use a pea protein powder for breakfast and sometimes at night) has worked well for me. It's not eliminated the problem, but I've got enough daylight to work with now. And it's all cheap and easy to make. Definitely try the pea sprouts over the pill DAO. I don't think the supplements do much, but the sprouts help a lot. And they're just generally good for you. 

I've focused on doing the simple changes and avoided not getting too bogged down. I run into that problem all the time.

[MTRJ75]

24 minutes ago, radiohfan23 said:

Hey! I'd avoid fish, meat, dairy leftovers for sure. But honestly, adding some Vit C, the 5HTP/ L Tyrosine and especially the pea sprouts (I also use a pea protein powder for breakfast and sometimes at night) has worked well for me. It's not eliminated the problem, but I've got enough daylight to work with now. And it's all cheap and easy to make. Definitely try the pea sprouts over the pill DAO. I don't think the supplements do much, but the sprouts help a lot. And they're just generally good for you. 

I've focused on doing the simple changes and avoided not getting too bogged down. I run into that problem all the time.

Thanks. Good stuff. 

But again, my diet is becoming so restrictive, I'm hoping to find what TO eat rather than what to avoid. Might be a shorter list. 

So, I frequently get broccoli sprouts from Whole Foods. Seems they are just as high in DAO according to Dr. Google. While that's a positive, I guess the negative might be that they haven't really helped yet, unless I'm just not eating enough. 

The freezing leftovers thing is a good idea, though many things don't freeze as well as others @Pistol

[Susanna]

I found that DAO supplement does work if taken before eating. 

[radiohfan23]

Thiamine Hydrochloride

 I take one (1/2 dose) every morning. I feel it gives me something I've been missing. I notice my energy and recovery is improved as my exercise tolerance is much better.