Hello all,

 

I was a lurker on SA but not a big participant. However, my taper has gotten exceedingly complicated over the past 6 or so months so I'm very glad this site exists as an alternate resource to the late-SA. My story is long, I apologize. I promise I can be brief but I feel like I want to get it all out there.

 

I was given an antidepressant, Prozac, as an 18 year old with significant family trauma. The Prozac made me agitated and gave me light sleep, so for god knows what reason, shortly after my 19th birthday my psychiatrist started me on a moderate dose of lithium. I stayed on this combination for about 5 years. I graduated college, moved to a new city, started working with a new psychiatrist. It was a time of a lot of transition, but psychiatry doesn't see people as complex beings responding to circumstance, it just sees illness. In 2017 at age 24 my psychiatrist suggested adding 500mg of depakote, an extra 300 of lithium, totaling 900 mg, and .5 ativan nightly for sleep. This was a profound mistake and I am still grieving the lost years of emotion, creativity, and cognitive function. I feel fortunate that I was never told I had a particular illness or told I'd need to be on these drugs for life. In fact, I was told I could stop them whenever I wanted, which was unfortunately not quite true. I moved cities again and started a new job.

 

Finally, in early 2023 I spoke to my new psychiatrist and asked to start tapering. We tapered off prozac over about a year, then depakote over a few months. These were uncomfortable but tolerable tapers. Then for the lithium she suggested a 6 week taper, 300 mg every two weeks. Once the taper ended I basically stopped sleeping. I was still taking the .5 ativan nightly, but moronically stopped cold turkey when it stopped helping me sleep. Then came the mistaken parade of damage control, trazodone, gabapentin, buspar, ativan, xanax, propanolol, reinstating some of the lithium. However, I had already unknowingly entered the realm of akathisia. By mid-October 2024 I basically wasn't sleeping and in a constant panic, despite the ativan and reinstating the lithium. My current psychiatrist had no idea what to do with me so I desperately reached out to a psychiatrist who advertised some knowledge of benzo tapering, to which I attributed my condition.

 

He met with me for an hour and said I was experiencing a "mixed episode" (which I fundamentally believe, in my bones, to be incorrect; this was withdrawal induced akathisia). However, I was desperate for help and had no idea how else to manage the situation. He suggested restarting the full 900mg of lithium as well as 25 mg of seroquel to help me sleep. I was terrified that this would create irreparable akathisia but felt like my options were limited, so I started the seroquel and I slept gloriously for the first time in several months. I got lucky. He tapered me off the seroquel, propanolol, and ativan over a few months. I was still absolutely determined to get off the lithium, so we also lowered that to 750.

 

By February/March of 2025, I became extremely sensitive to heat. I had been taking hot baths every night, which had been incredibly helpful, but they now made my heart pound and made me agitated. My heart rate shot up weirdly high during normal walks, sleep was incredibly difficult, and the brain fog was unbearable. I found that lifting something too heavy, even opening a window too close to bed, could agitate my nervous system so that I couldn't sleep that night. I had been taking daily long walks that I no longer had the energy for.

 

August of 2025 I made my most recent cut to the lithium, 600 to 450, finally below the dose I started on as 19 year old. The mental clarity came flooding back within weeks, I cried with gratitude. I also almost immediately noticed an increased sensitivity to food, medications and supplements that I did not have before. I got a bizarre cluster of symptoms (insomnia, ear ringing, anxiety, agitation, insomnia, nerve pain, sudden heat, and others) every time I ate or took something like magnesium or tylenol. I was vaguely familiar with the idea of histamine sensitivity and withdrawal so I began trying to modify my diet. I ended up eating only chicken, broccoli, and cauliflower for 2 months as they seemed to be the only foods that didn't cause symptoms.

 

I have recently started adding foods back, I'm up to 10. I am being monitored by a doctor and working very hard to correct the nutrient deficiencies that developed during that time. My nervous system has actually been recovering, I am now able to lift heavy things and open windows and take hot showers without irritating my nervous system, which is huge progress. In many ways I am closer to full health than now than I was at any point in my taper, except for the extreme food and medication sensitivity. I am going for walks again and taking hot showers and lifting heavy things and many days my mood and sleep are fine, except when impacted by food reactions.

 

I am working with a doctor who specializes in mast cell activation syndrome. I know my condition is withdrawal and a sensitized nervous system, not pure MCAS, but he works with others with extreme sensitivities so he is able to apply much of the same logic to my situation. We go "low and slow" adding any supplements and we are discussing potentially adding a very low dose of a mast cell-supporting medication. He has also said that lithium has a known impact on mast cells so it makes sense that I developed this extreme sensitivity during a lithium taper. My current psychiatrist is open to a slow liquid taper (no more than 10% a month) for the rest of my lithium taper. I have been holding 450 mg since August and don't plan to taper again until I have stabilized my food and nutrition. However, I am still reacting to most foods and worried about getting the nutrition I need. I am also worried about how much worse this will get when I am able to start tapering my lithium again. Some days I worry I will never be able to get off the lithium, which I want so so so badly. As I write this out I see the hope in my situation, but most days I feel kind of hopeless and stuck. I guess I'm just here for support. Sorry again for how long this was. I guess it all feels relevant.

Welcome to the forum!

 

This is a volunteer-run, community forum aimed at helping those who are tapering and/or experiencing difficulties with psychiatric medications and withdrawl syndrome. We are not medical professionals and cannot offer medical advice. We simply offer support and opinions which you could use as talking points with a medical provider knowledgeable in withdrawing off psychiatric medications.

 

Please familiarise yourself with the forum rules and the disclaimer located here: Guidelines

 

Thank you for crossing over from SA and for updating your signature.

 

I think it is sensible to hold and go slower with your lithium taper given that you experienced a number of symptoms from dropping the dose. As you are likely aware, the drop you did make is quite a bit larger than the amount SA recommended in the past.

 

We'd recommend avoiding introducing further pharmaceuticals unless absolutely necessary (eg. Tylenol), especially as you're very sensitive as many are in withdrawal.

 

Have the cluster of symptoms you developed from the drop you made mostly improved? It sounds like you are generally OK when not reacting to a food or substance?

 

I hope you're able to make further dose drops without inducing significant symptoms and that you do feel better as the dose is reduced (without rushing).

Hi @Luke

 

Thank you for your response. Yes, will be going much slower and avoiding pharmaceuticals as much as possible. Have trialed some antihistamines for the histamine issue with minimal issues, I might be less sensitive now than I was right after my last cut. Trying to only take what is necessary and start at very low doses.

 

And yes, have tentatively realized recently that the cluster of autonomic nervous symptoms, mostly sensitivity to heat and exertion, have improved a lot over the past month or so. Have no idea what will happen when I start my extremely slow taper. I am mostly ok when not reacting to food or substances, my sleep, mood, etc. though my physical health has been compromised by the food issues a little which isn't great. Feeling a little precarious but feeling determined to eventually, slowly, safely get off this last drug.

Edited February 11Feb 11 by pluto

Hi @pluto

 

Welcome to the forum

 

15 hours ago, pluto said:

I was given an antidepressant, Prozac, as an 18 year old with significant family trauma. The Prozac made me agitated and gave me light sleep, so for god knows what reason, shortly after my 19th birthday my psychiatrist started me on a moderate dose of lithium. I stayed on this combination for about 5 years. I graduated college, moved to a new city, started working with a new psychiatrist. It was a time of a lot of transition, but psychiatry doesn't see people as complex beings responding to circumstance, it just sees illness. In 2017 at age 24 my psychiatrist suggested adding 500mg of depakote, an extra 300 of lithium, totaling 900 mg, and .5 ativan nightly for sleep. This was a profound mistake and I am still grieving the lost years of emotion, creativity, and cognitive function. I feel fortunate that I was never told I had a particular illness or told I'd need to be on these drugs for life. In fact, I was told I could stop them whenever I wanted, which was unfortunately not quite true. I moved cities again and started a new job.

 

This is a common story particularly in the US.

 

15 hours ago, pluto said:

Finally, in early 2023 I spoke to my new psychiatrist and asked to start tapering. We tapered off prozac over about a year, then depakote over a few months. These were uncomfortable but tolerable tapers. Then for the lithium she suggested a 6 week taper, 300 mg every two weeks. Once the taper ended I basically stopped sleeping. I was still taking the .5 ativan nightly, but moronically stopped cold turkey when it stopped helping me sleep. Then came the mistaken parade of damage control, trazodone, gabapentin, buspar, ativan, xanax, propanolol, reinstating some of the lithium. However, I had already unknowingly entered the realm of akathisia. By mid-October 2024 I basically wasn't sleeping and in a constant panic, despite the ativan and reinstating the lithium. My current psychiatrist had no idea what to do with me so I desperately reached out to a psychiatrist who advertised some knowledge of benzo tapering, to which I attributed my condition.

Im sorry to read this. Fast tapers lead to nervous system dysregulation and WD symptoms. Its so common for these symptoms to be 'treated' with more drugs.

 

15 hours ago, pluto said:

He met with me for an hour and said I was experiencing a "mixed episode" (which I fundamentally believe, in my bones, to be incorrect; this was withdrawal induced akathisia). However, I was desperate for help and had no idea how else to manage the situation. He suggested restarting the full 900mg of lithium as well as 25 mg of seroquel to help me sleep. I was terrified that this would create irreparable akathisia but felt like my options were limited, so I started the seroquel and I slept gloriously for the first time in several months. I got lucky. He tapered me off the seroquel, propanolol, and ativan over a few months. I was still absolutely determined to get off the lithium, so we also lowered that to 750.

yes I agree on both points, wd 100% and you were lucky and Im glad of that

 

15 hours ago, pluto said:

By February/March of 2025, I became extremely sensitive to heat. I had been taking hot baths every night, which had been incredibly helpful, but they now made my heart pound and made me agitated. My heart rate shot up weirdly high during normal walks, sleep was incredibly difficult, and the brain fog was unbearable. I found that lifting something too heavy, even opening a window too close to bed, could agitate my nervous system so that I couldn't sleep that night. I had been taking daily long walks that I no longer had the energy for.

So common alot  experience heat sensitivity. Me included...

 

15 hours ago, pluto said:

August of 2025 I made my most recent cut to the lithium, 600 to 450, finally below the dose I started on as 19 year old. The mental clarity came flooding back within weeks, I cried with gratitude. I also almost immediately noticed an increased sensitivity to food, medications and supplements that I did not have before. I got a bizarre cluster of symptoms (insomnia, ear ringing, anxiety, agitation, insomnia, nerve pain, sudden heat, and others) every time I ate or took something like magnesium or tylenol. I was vaguely familiar with the idea of histamine sensitivity and withdrawal so I began trying to modify my diet. I ended up eating only chicken, broccoli, and cauliflower for 2 months as they seemed to be the only foods that didn't cause symptoms.

this was a very big cut!

 

15 hours ago, pluto said:

have recently started adding foods back, I'm up to 10. I am being monitored by a doctor and working very hard to correct the nutrient deficiencies that developed during that time. My nervous system has actually been recovering, I am now able to lift heavy things and open windows and take hot showers without irritating my nervous system, which is huge progress. In many ways I am closer to full health than now than I was at any point in my taper, except for the extreme food and medication sensitivity. I am going for walks again and taking hot showers and lifting heavy things and many days my mood and sleep are fine, except when impacted by food reactions.

 

This is so good to read, youre doing really really well,

 

15 hours ago, pluto said:

I am working with a doctor who specializes in mast cell activation syndrome. I know my condition is withdrawal and a sensitized nervous system, not pure MCAS, but he works with others with extreme sensitivities so he is able to apply much of the same logic to my situation. We go "low and slow" adding any supplements and we are discussing potentially adding a very low dose of a mast cell-supporting medication. He has also said that lithium has a known impact on mast cells so it makes sense that I developed this extreme sensitivity during a lithium taper. My current psychiatrist is open to a slow liquid taper (no more than 10% a month) for the rest of my lithium taper. I have been holding 450 mg since August and don't plan to taper again until I have stabilized my food and nutrition. However, I am still reacting to most foods and worried about getting the nutrition I need. I am also worried about how much worse this will get when I am able to start tapering my lithium again. Some days I worry I will never be able to get off the lithium, which I want so so so badly. As I write this out I see the hope in my situation, but most days I feel kind of hopeless and stuck. I guess I'm just here for support. Sorry again for how long this was. I guess it all feels relevant.

I think your system is suffering alot from all it's been through. Its made you very sensitive to everything. Supplements are not often tolerated well in the community so it's worth being careful there. Shame about your food reactions. We normally suggest getting nutrition from diet.

 

Yes I think your hold is wise. That last drop was massive and on top of everything you have been through your system is going to need some time to recover.

 

How do you feel in the first few hours of taking Lithium? Does it make you worse?

 

When you are ready to taper, following a slow taper makes the most sense as you have said. We have a post about it here: Tapering Information

 

Thanks again for joining and I hope your find the site supportive

 

Chippy

13 hours ago, pluto said:

Have trialed some antihistamines for the histamine issue with minimal issues,

Hey, to add I would avoid these, they can make you quite sick if you are not careful IMO.

 

13 hours ago, pluto said:

And yes, have tentatively realized recently that the cluster of autonomic nervous symptoms, mostly sensitivity to heat and exertion, have improved a lot over the past month or so. Have no idea what will happen when I start my extremely slow taper. I am mostly ok when not reacting to food or substances, my sleep, mood, etc. though my physical health has been compromised by the food issues a little which isn't great. Feeling a little precarious but feeling determined to eventually, slowly, safely get off this last drug.

Good to hear you are improving. 🙂 Slowly slowly wins the race

4 hours ago, Chippy said:

This is so good to read, youre doing really really well,

 

  @Chippy thank you so much for the welcome! and well, sort of, but thank you. 

 

4 hours ago, Chippy said:

I think your system is suffering alot from all it's been through. Its made you very sensitive to everything. Supplements are not often tolerated well in the community so it's worth being careful there. Shame about your food reactions. We normally suggest getting nutrition from diet.

Ugh, i know. some people seem to do ok with supplements it seems? in order to not get super malnourished it seems like my best option. Im very upset about the food reactions, I wish i could get more nutrients from my food. I hope that if im careful the food sensitivity will fade, as I've seen a few report on SA

 

4 hours ago, Chippy said:

How do you feel in the first few hours of taking Lithium? Does it make you worse?

 

fortunately no. there was a scary period for a few days earlier last year where it did, but generally i am able to tolerate it. I also take a med for my thyroid that i haven't had an issue with, and a vitamin d supplement i've been ok with.

 

4 hours ago, Chippy said:

Hey, to add I would avoid these, they can make you quite sick if you are not careful IMO.

I saw something about this on another post, I didn't know. what happens when people take antihistamines?

4 hours ago, Chippy said:

this was a very big cut!

the suggestion of my psychiatrist. i knew better but thought that because I had tolerated cuts of that size i'd be ok. i've learned my lesson.

3 minutes ago, pluto said:

Ugh, i know. some people seem to do ok with supplements it seems? in order to not get super malnourished it seems like my best option. Im very upset about the food reactions, I wish i could get more nutrients from my food. I hope that if im careful the food sensitivity will fade, as I've seen a few report on SA

Im sorry, this is tough. Youre making the best choices for you as you go along though. Its good!

 

4 minutes ago, pluto said:

ortunately no. there was a scary period for a few days earlier last year where it did, but generally i am able to tolerate it. I also take a med for my thyroid that i haven't had an issue with, and a vitamin d supplement i've been ok with.

Great! Good to hear. Just checking for an ADR. You should be able to sit here now and get as settled as you can before considering a taper. Perfect. 

 

4 minutes ago, pluto said:

I saw something about this on another post, I didn't know. what happens when people take antihistamines?

Just something to watch. Id avoid if you can. They can set us back if we are not careful. Not an absolute thing but I had a big issue from them. Generally anything Psychoactive is to be avoided.

 

3 minutes ago, pluto said:

the suggestion of my psychiatrist. i knew better but thought that because I had tolerated cuts of that size i'd be ok. i've learned my lesson.

Standard! But good you are doing okish, I think in time you'll settle down some more as you start to heal and adjust.

7 minutes ago, Chippy said:

Great! Good to hear. Just checking for an ADR. You should be able to sit here now and get as settled as you can before considering a taper. Perfect. 

Thank you, i really really appreciate the positivity, i could definitely use some right now.

 

7 minutes ago, Chippy said:

Just something to watch. Id avoid if you can. They can set us back if we are not careful. Not an absolute thing but I had a big issue from them. Generally anything Psychoactive is to be avoided.

I understand and agree. I am reconsidering continuing to try them. may i ask which antihistamine and what your issue was? also, what counts as psychoactive?

 

7 minutes ago, Chippy said:

Standard! But good you are doing okish, I think in time you'll settle down some more as you start to heal and adjust.

Thank you so much. this is so scary particularly with the food issues. hoping time and being careful will be my friend.

Edited February 12Feb 12 by pluto

2 minutes ago, pluto said:

Thank you, i really really appreciate the positivity, i could definitely use some right now.

Pleasure my friend 

 

2 minutes ago, pluto said:

I understand and agree. I am reconsidering continuing to try them. may i ask which antihistamine and what your issue was? also, what counts as psychoactive?

Yes of course. Promethazine just set me back just in general really. I blame it for my protracted wd tbh. I can’t prove it but that’s my feeling on it. 
 

Alcohol, caffeine, other ads benzos that kind of thing.

 

5 minutes ago, pluto said:

Thank you so much. this is so scary particularly with the food issues. hoping time and being careful will be my friend.

I understand. You’re very brave it’s a lot to deal with. But have faith the roads not a straight one often, but you can do it and healing is happening all the time. 

Hey @pluto welcome to the forum. You have sure dealt with a lot. 

Prozac majorly affects histamine receptors as does the drug I am on... this affects the foods we eat. I have found a low histamine diet is very helpful and avoiding histamine liberators.

I have used these lists as guides:

Source: Mastzellaktivierung.info https://share.google/eNdGaLAy86RiqIKgf

 

https://share.google/GqMlRoEvH2xBjXlot

 

As far as sensitivity to supplements or adding drugs such as an antihistamine...it is really important to understand our allostatic load. The body can come to a point where so many changes and stressors cause it to start reacting to even little things. 

Less is always better. Keep it as simple as possible. 

Lessening stress/stressors for the body is so important.

❤️🙏

Hi @LostinCanada

 

thank you! Yes, I am already on a low histamine diet, I seem to be reacting to even some low histamine foods, though my safest foods are all low histamine. It’s a very frustrating situation. 
 

I hear you about the allostatic load. I’m just so worried about my nutrition. If I weren’t I would just let my body be and heal. I may continue to skip the antihistamine and just work on supplements. I’ve read vitamin c and quercetin can work very well as natural antihistamines.

Just now, pluto said:

read vitamin c and quercetin can work very well as natural antihistamines

It's true but quercetin is very tricky. Both of these can cause reactions.

I do take vitamin C occasionally when I am really congested.

The key is start with a tiny dose...cut the pill, etc. 

Only try one at a time so if you react you will know what causes it.

3 minutes ago, pluto said:

worried about my nutrition.

I get it...my diet is limited too. ❤️🙏

8 minutes ago, LostinCanada said:

It's true but quercetin is very tricky. Both of these can cause reactions.

I do take vitamin C occasionally when I am really congested.

The key is start with a tiny dose...cut the pill, etc. 

Only try one at a time so if you react you will know what causes it.

@LostinCanada Of course, thank you. That’s the plan. Is this a warning about general reactions or do people have specific kinds of issues with these supplements? I definitely know to try a small amount and not make any changes for a few weeks while I figure out if I react. 

10 minutes ago, LostinCanada said:

I get it...my diet is limited too. ❤️🙏

thank you ❤️ how limited is your diet? How do you manage getting adequate nutrition?

1 minute ago, pluto said:

Is this a warning about general reactions or do people have specific kinds of issues with these supplements?

I know on SA, it seems quercetin was problematic and my hubby has issues with it...he isn't in WD but has fibromyalgia which has similar CNS sensitivity.

 

2 minutes ago, pluto said:

how limited is your diet? How do you manage getting adequate nutrition?

Breakfast is organic non GMO corn flakes with blueberries and 1/2 banana and lactose free milk.

Lunch is a baked potato, 2 eggs and toast with honey. Or a grilled cheese (mozza or fresh havarti) and roasted potatoes.

Dinner is homemade chicken soup with potatoes, onions, carrots, broccoli, cauliflower...I also make a corn flour muffin.

Or baked chicken with veggies or pasta with chicken and veggies. Sometimes a stir fry. I found grass fed ground beef, so I will do a meatloaf and veggies. I also do a turkey hash with Swiss chard, mushrooms and sweet potatoes. Turkey meatballs and veggies too. 

Always freeze any leftovers and do not thaw... reheat from a frozen state.

7 minutes ago, LostinCanada said:

I know on SA, it seems quercetin was problematic and my hubby has issues with it...he isn't in WD but has fibromyalgia which has similar CNS sensitivity.

Very interesting, I’ll go back on the site and read. I appreciate the info. 

 

7 minutes ago, LostinCanada said:

Breakfast is organic non GMO corn flakes with blueberries and 1/2 banana and lactose free milk.

Lunch is a baked potato, 2 eggs and toast with honey. Or a grilled cheese (mozza or fresh havarti) and roasted potatoes.

Dinner is homemade chicken soup with potatoes, onions, carrots, broccoli, cauliflower...I also make a corn flour muffin.

Or baked chicken with veggies or pasta with chicken and veggies. Sometimes a stir fry. I found grass fed ground beef, so I will do a meatloaf and veggies. I also do a turkey hash with Swiss chard, mushrooms and sweet potatoes. Turkey meatballs and veggies too. 

Always freeze any leftovers and do not thaw... reheat from a frozen state.

This sounds delicious and amazing! I hope to work my way up to this. Right now I can eat grass fed butter, olive oil, low histamine frozen turkey, lamb, bison and fish, as well as broccoli cauliflower and oats. I just made myself a little sick trying to add back lentil and macadamia nuts which are no gos. And I originally had white potato but then I got suspicious it might have been giving me joint pain and muscle cramps. I’m currently testing the theory by skipping it for a few days. I’m really trying to get some nutrient dense foods in so I think my next experiment might be quinoa, but carrots, sweet potato, and onions are all high on my list as well.
 

So you eat fairly similar things from day to day? I’m very stressed out about creating a “rotation diet” so I don’t develop sensitivities from over exposure to a given food, which did happen to me after eating tons of chicken daily for two months. Was your diet ever more limited so that you had to work up to all of these foods? Also you can do dairy! 

Edited February 12Feb 12 by pluto

17 minutes ago, pluto said:

frozen turkey, lamb, bison and fish

I am allergic to fish, seafood, oats and rice....ugh

I don't know why but I can't make myself eat bison... 

19 minutes ago, pluto said:

dairy

Yes... lactose free milk is fine... and mozzarella and fresh havarti is tolerated.

20 minutes ago, pluto said:

lentil and macadamia nuts

Lentils are really bad for me (I made them from dry and they are still a problem) as are tree nuts and peanuts. I am able to tolerate navy beans if I make them from dry.

22 minutes ago, pluto said:

you eat fairly similar things from day to day?

I do but always fresh vegetables. I can also do turnips and beets so I do mix it up.

I will have a bed of lettuce sometimes with a couple cherry tomatoes and just salt. 

I use pure salt... not iodized because that's an issue too. I have an organic apple daily.

25 minutes ago, pluto said:

Was your diet ever more limited so that you had to work up to all of these foods?

I went from eating most things that were not processed to having this issue flare up over a year ago. 

Still now some of these foods I put on the back burner at times and then try again in a few weeks...

I have been able to cheat once every few months and have an avocado. I try to stick to a lot of organic if available. 

It's definitely a challenge. ❤️🙏

3 minutes ago, LostinCanada said:

I am allergic to fish, seafood, oats and rice....ugh

I don't know why but I can't make myself eat bison

Oh no that does add an extra challenge! I understand, it was a little bit of an adjustment for me too but beef was just too heavy for me. I didn’t eat much meat before this started. It was hard losing so many plant foods. 

 

4 minutes ago, LostinCanada said:

Yes... lactose free milk is fine... and mozzarella and fresh havarti is tolerated.

This is so interesting! I feel like a lot of low histamine/“heal your gut” advice recommends skipping dairy. I’d love the extra source of protein. I’ll add mozzarella to my list 

 

5 minutes ago, LostinCanada said:

Lentils are really bad for me (I made them from dry and they are still a problem) as are tree nuts and peanuts. I am able to tolerate navy beans if I make them from dry.

Yes I’ve seen online they’re really hit or miss for low histamine/MCAS people; I was so hopeful for lentils because of the folate, I’m really low in folate right now. I tried getting red ones, supposedly the easiest to tolerate, and soaking them for a long time. No dice. I was very disappointed. 

 

7 minutes ago, LostinCanada said:

do but always fresh vegetables. I can also do turnips and beets so I do mix it up.

I will have a bed of lettuce sometimes with a couple cherry tomatoes and just salt. 

I use pure salt... not iodized because that's an issue too. I have an organic apple daily.

This is so interesting, I had a terrible reaction to iodized salt a couple months ago and for the life of me I could not figure out why. Relieved in some ways to hear that it’s something other people experience. 

 

8 minutes ago, LostinCanada said:

went from eating most things that were not processed to having this issue flare up over a year ago. 

Still now some of these foods I put on the back burner at times and then try again in a few weeks...

I have been able to cheat once every few months and have an avocado. I try to stick to a lot of organic if available. 

It's definitely a challenge. ❤️🙏

So relieved to talk to someone else in medication withdrawal who is going through this. I visit MCAS spaces, and they do have very sensitive nervous systems like we do so a lot of their guidance still applies but I always feel like I’m translating it a little bit for my experience and like I’m not quite getting the peer support I wish I had. Thank you for sharing. 

3 minutes ago, pluto said:

terrible reaction to iodized salt a couple months ago and for the life of me I could not figure out why.

Apparently iodine is a histamine liberator... iodine is also added to some supplements so watch for it.

3 minutes ago, pluto said:

didn’t eat much meat before this started. It was hard losing so many plant foods. 

 

I was vegetarian before my cold turkey but my body craved chicken and beef so I listened. 

4 minutes ago, pluto said:

mozzarella

I love cheese so much. 

 One day at a time. 💯

12 minutes ago, LostinCanada said:

Apparently iodine is a histamine liberator... iodine is also added to some supplements so watch for it.

Ohhhh wow. That is fascinating. There’s iodine naturally in fish, should I not be eating fish? It seems like I’m tolerating it but my body is a mess right now so it’s a little hard to tell.

 

12 minutes ago, LostinCanada said:

I love cheese so much. 

 One day at a time. 💯

Thank you 🧀 ❤️ 

 

 

also, have you found that your tolerance to new foods is increasing over time? From what I’ve read on SA that seems to be the norm but I feel like I’ve also seen a few stories where people just get stuck like this. I’ve only been doing a true low histamine diet for a few weeks now so it’s hard to tell for myself.

Edited February 12Feb 12 by pluto

4 minutes ago, pluto said:

There’s iodine naturally in fish, should I not be eating fish?

We do need some histamine...I think things with trace iodine aren't really a problem... even natural salt has traces 

5 minutes ago, pluto said:

have you found that your tolerance to new foods is increasing over time

Yes...the fact I can sometimes have an avocado is huge. And sometimes I can eat yogurt too.

Just if I do it a few days in a row, it's a problem again.

6 minutes ago, pluto said:

only been doing a true low histamine diet for a few weeks

You are early inti the process...give it time.

👍

9 minutes ago, LostinCanada said:

You are early inti the process...give it time.

👍

Thank you, I appreciate it. I have a lot of panic about this. I was actually pretty calm about most of my weird withdrawal symptoms, something about not being able to eat really sets me off.

 

my last question for you: I see in your list of supplements you take algae oil for omega 3. Do you find this is superior to/more tolerable than regular fish oil? I was taking regular fish oil for a while but stopped it in a panic when the histamine reactions started. 

Edited February 12Feb 12 by pluto

@pluto. You are so self aware and a great writer. Super easy to follow your posts. No mean feat with these scrambled brains of mine.

 

You are much further along than me in listening to your body. IT KNOWS what foods or supplements it needs

 What works for some...maybe even A LOT of people... may not be right for you or me. 

 

I commiserate with your suffering.  I too had trauma and was misdiagnosed.  

 

Keep trusting yourself...and keep sharing.  I'll be reading and learning!

28 minutes ago, pluto said:

see in your list of supplements you take algae oil for omega 3. Do you find this is superior to/more tolerable than regular fish oil? I was taking regular fish oil for a while but stopped it in a panic when the histamine reactions started

So this one is tricky...it is definitely high histamine....I have reintroduced it and after 2 days I was getting hives again...then I hit a wave so I haven't been taking it. I am going to try for once a week but I think if you are eating fish, that is better...I wish I could.

I personally believe it is better to get what you need from food as opposed to supplements if possible. Some on here had very bad reactions to fish oil. @AAoffZ_2 and @NBJ71 if memory serves me right.

 ❤️🙏

 

33 minutes ago, mars said:

@pluto. You are so self aware and a great writer. Super easy to follow your posts. No mean feat with these scrambled brains of mine.

 

Thank you! My fellow planet!

 

34 minutes ago, mars said:

You are much further along than me in listening to your body. IT KNOWS what foods or supplements it needs

 What works for some...maybe even A LOT of people... may not be right for you or me

I have to keep reminding myself of this. It’s so scary not knowing whether something will work. Everything I do to help myself always feels like stepping off a cliff.

 

34 minutes ago, mars said:

commiserate with your suffering.  I too had trauma and was misdiagnosed.

Yes, I see your story too, I’m so sorry you also had your natural human emotions treated like a disease. I see you also got polypharmed. Glad to meet you, so looking forward to seeing your story progress as well.