Menopause Matters Forum

Menopause Discussion => All things menopause => Topic started by: joziel on July 04, 2022, 09:59:12 AM

Title: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 04, 2022, 09:59:12 AM
I'm going to start a thread here to run whilst I do this 2 week low histamine diet trial, to keep me accountable.  :)  This is going to involve giving up a lot of foods I really enjoy, like dark chocolate, coffee, tea, mature cheese..... But I believe I can do it for 2 weeks!! (And if I start to feel better, that will be extra encouraging.)

If anyone wants to join me, feel free to chip in with your experiences too - things are always easier together!  :)

I will be doing it really pretty strictly so I can get a reliable diagnosis :o and only eating foods which rate 0/green on this list, which is the most commonly accepted list: https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf   (PS there is also an app you can download from the App Store called Histamine Info which lists the foods in an easy portable way.)

I will be checking all additives to foods (ie guar gum is a 'no' and it is added to many coconut milks and creams) and all additives to any supplements I take. I will not be eating leftovers from the fridge, since as food ages, histamine builds up. (I will freeze leftovers, that is okay.)

I will be adding in vitamin C 3x daily; quercetin (when it arrives in the post); and zinc. I'm not going to take the type 1 and type 2 anti-histamines twice daily because these have potential side effects and I'm trying to avoid 'drugs' and stick to natural supplements. I'm also not going to take the DAO yet, since it is very expensive - but it will be useful I guess if I discover this is the cause of my current struggles.

I am just waiting for some food I ordered to arrive in a few days - and trying to use up some food I won't be able to eat and don't want to throw out, but I am hoping to start towards the end of this week (8th/9th July).

My current symptoms I think might be related to histamine issues have mostly started since I began HRT. This makes sense, since our mast cells have estrogen receptors all over them. When we take extra estrogen or if we are teetering on the edge of histamine intolerance anyway and take some estrogen, the estrogen binds to the receptors on the mast cells and the mast cells produce a lot of histamine - leading to our bodies not being able to process and get rid of it fast enough and too much histamine.

My symptoms are: Episodes of pulsing/throbbing associated with high blood pressure. Heart beating heavily. Palpitations (of a light fluttering kind, not a skipped beat). Feeling jittery and hyper, over-caffeinated. Essentially, physiological symptoms of anxiety - although I don't have anxious thoughts and it doesn't start with worrying. These episodes are much worse at night and can wake me from sleep. I am also waking early in the mornings. (Originally at 4.30am, but I now seem to have reached 6am  ;D Today I got to 6.45am, which was a new record  ;D ;D ;D - although I am now very throbby.). I also have an over-production of mucous after eating and a drippy nose and watery right eye. These eye/nose/mucous issues have gone on for years. And I have some joint pain which has improved a bit but not resolved on HRT. All these things can be symptoms of histamine intolerance. So my theory is that I might have been on the edge of this mildly pretty much all my life, but adding estrogen has just tipped me over the edge...

For more info on histamine intolerance, I've found these links useful:

https://balance-menopause.com/uploads/2021/09/Histamine-Intolerance-1.pdf

https://lizearlewellbeing.com/podcasts-videos/histamine-intolerance-with-dr-tina-peers/ (Tina Peers is one of the experts on histamine intolerance.)

Let's see what comes of my experiment - of course it might do nothing at all. If that happens, I'll be able to eat everything again so I won't be TOO upset....
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Marchlove on July 04, 2022, 10:19:10 AM
Well done joziel, I’ll be interested to see how you get on.

Just remind us all, are you peri or post and what hrt/thyroid are you on? This will be useful for others if they are on the same regime and have similar symptoms. I think I recall you also said you had low ferritin?

Good luck! X
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 04, 2022, 12:19:04 PM
My ferritin is 44, which isn't officially classed as low - but is on the low side. I've just started supplementing with some gentle iron. But my ferritin has been low for years like this and I haven't had these symptoms before (the cardiovascular ones I mean).

I am 44yo and peri, but I am on continuous HRT due to a history of mild endo. I'm currently on 100mg utrogestan, Estradot 62.5mcg, testosterone and desogestrel POP (to keep endo suppressed).

I have previously tried stopping the testosterone for 10 days but that made no difference. Symptoms get worse if/when I increase estrogen.

I have no thyroid issues that I know of and test normally for thyroid.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 04, 2022, 02:02:44 PM
Here is a super article I just found explaining the connection between estrogen and histamine: https://www.larabriden.com/the-curious-link-between-estrogen-and-histamine-intolerance/

"The connection between mast cells, histamine, and hormones is that:

Estrogen stimulates mast cells to release histamine and down-regulates the DAO enzyme that clears histamine. At the same time, histamine stimulates the ovaries to make more estrogen. The net result can be a vicious cycle of estrogen → histamine → estrogen → histamine.
Progesterone stabilises mast cells, up-regulates DAO, and can therefore reduce histamine.
Many of the symptoms attributed to so-called “estrogen dominance” (a term I do not use) are actually symptoms of histamine or mast cell activation. For example, mast cells and histamine play a role in both endometriosis and premenstrual dysphoric disorder (PMDD)."

As I also have mild endometriosis, all this is getting very interesting...
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: kittywells on July 04, 2022, 06:01:42 PM
Wow - watching this with interest, and really appreciate you sharing this experience for everyone's benefit. I went on a low histamine diet about 3 months ago for a couple of weeks almost immediately after contracting covid. I suspected I had mast cell issues because it seemed that the virus had brought back a lot of the symptoms I associated with hormones being out of whack when my perimenopause started. The diet really helped me a lot, or at least the hot flushes and itchy skin went almost right away once I started it.

I have kept up some of the restrictions (still no sugar and high-sugar foods barring the occasional teaspoon of coconut palm sugar, no avocado/spinach/tomatoes etc, no alchohol, and have cut way way down on caffiene) and I think they have helped me feel better and reduce some of my inflammation. But as a single mother with long covid I don't have the resources to maintain the more restrictive form of the eating regime! It required a lot of effort, shopping and thinking about meal prep that I'm not able to do now. And a lot of the foods that are good for gut health/microbiome are no-nos on it. I've reintroduced stuff like yoghurt and kefir as well as some cheeses and dark chocolate but the symptoms haven't come back.

The information about the link between estrogen and progesterone and histamine is fascinating and so useful for me. I've had to switch from sequential to continuous HRT over the last month because I noticed I was having a terrible time during the estrogen-only weeks - awful insomnia, racing heart, physiological symptoms of anxiety despite not feeling anxious just exactly as you describe. My body clearly needs the progesterone to deal with the histamine. So glad I listened to my body and talked my GP round. She was wary about me going on conti (i'm almost 49 but went on FemSeven Sequi at 43 due to awful peri) but it's going great so far. And most importantly my sleep is better which is so crucial for my overall recovery. When my hormones are more balanced and my overall condition is better I'm going to try antihistamines too.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 04, 2022, 06:11:29 PM
That sounds great kittywells. I am supposed to be trying to stop my desogestrel and instead take 200mg of utrogestan continuously - to see if that will also suppress my endo. If/when I get around to trying that, it will be interesting to see if doubling the body identical progesterone helps these histamine-y symptoms I have too. (The desogestrel is progesterone too of course, but not body identical - so I don't know if it would be doing the same thing? The article only talks about body identical progesterone - not sure if synthetic works as well for this.)

There are some great low histamine cookbooks you can get on Amazon. Just looking at the list of things you can eat by itself is a bit overwhelming and restrictive, so I've found it useful to look at recipes to get ideas and perhaps adjust a bit. I've found a couple of granola recipes which sound like they will provide me with snacks, along with some raisins. Since I can't have chocolate or eat spoonfuls of leftovers or cut myself pieces of cheese anymore  ;D ;D
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Tora on July 04, 2022, 07:08:43 PM
Have you got a blender/smoothie maker Joziel? I skim read the food list and spotted an ice cream recipe ;D
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 05, 2022, 01:01:10 PM
I do, but I don't use it because smoothies break down fibre and result in high blood sugar levels as a result. So I eat whole fruit. I do love a smoothie though.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 07, 2022, 10:05:02 AM
Okay, I have my low histamine foods stocked up now. I am about to make a couple of low histamine granola recipes today...

And then I am starting tomorrow.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Pippa52 on July 07, 2022, 10:18:17 AM
Will definitely read your info on histamine diet.  Thanks so much for posting.  xx
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Vicky81 on July 07, 2022, 11:07:28 AM
I'm going to go ahead and take the histamine blood test with medichecks just to rule it out ...
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 07, 2022, 12:27:35 PM
I don't think there is a reliable blood test, Vicky. And if there is, it won't be measuring histamine directly like that.

There are some complicated blood tests you can do, which GPs don't offer, that can *suggest* histamine intolerance - but nothing which can officially diagnose it. Which is why the 2 week diet trial is what is needed, for diagnosis.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: sheila99 on July 07, 2022, 03:53:33 PM
Good luck, I hope your will power remains strong. I'll be with you in spirit only whilst munching away on chocolate and coffee.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 07, 2022, 06:11:38 PM
 ;D ;D ;D ;D

Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Scampidoodle on July 07, 2022, 06:12:09 PM
This is all very interesting! My histamine/mast cell symptoms started or at least ramped up upon starting hrt a few years back. I was feeling what I though was perimenopause and was prescribed 3 pumps oestrogel, but symptoms got worse culminating in jittery anxiety, hot flushes, depression, sensitive flushy cheeks, irritable bladder. I came off all the oestrogen and started seeing Dr Tina Peers who you mention in one of your links. I did low histamine diet, antihistamines, mast cell stabiliser and various supplements for 6 months. The thing that really helped me was having my Mirena coil replaced! I’d had one for 3.5 years and had it replaced and I immediately felt relief from a lot of symptoms and then it took about 1/2 months for the rest to ebb away. I began to get my energy back, eat and drink normally and went back to work! I suspect I’ve always had a kind of oestrogen dominance (genetic tests show I don’t detoxify oestrogen well so it builds up) but I had no idea.

I’ve had another flare up after a year due to eating badly and a nasty virus (viruses raise your histamine levels) so I’m getting some symptoms again just not to the same extent. So I’ve just had coil replaced again! After only a year. So I’ll see if the boost settles things again. So progesterone does help. It balances the high E and also settles mast cells, whereas oestrogen destabilises mast cells. For me, going on hrt was a bad decision!!

Hope some of that helps someone anyway and good luck xxx
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Scampidoodle on July 07, 2022, 06:16:41 PM
I forgot after reading your original post I also woke mega early every day before, with an adrenaline rush it was awful. Taking antihistamines at night helped a lot as histamines start rising in the evening. My hair was shedding a lot and I can really empathise with the jittery fluttery heart feelings! Like you feel anxious but you’re not anxious! I have that with this flare up and it’s a horrid feeling. It did go away last time. It all did! So just to reassure there will be something that helps! X
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 07, 2022, 06:26:12 PM
Oh thank phewy for that, you've given me hope. Doctors I've spoken to seem to have no idea about all this - even experienced HRT/menopause specialists. Yet I see it appearing so much on these online forums and FB groups and some women end up stopping HRT because of it.

I know that sort of doctor who can help me, is going to have seen this before in relation to HRT and, when I start to describe it, is going to recognise it and know exactly what I'm talking about.  ;D Because it is SO related to the estrogen. So I begin to tell a doctor, filled with hope, about what I'm experiencing - really wanting to get a response like that. Instead, I get blank faces and slight frowns and all they seem to be able to suggest is reducing estrogen or increasing more gradually.

Tina Peers is on my list of people to see if I need extra help or think this really could be histamine related so it's really good to hear she helped you.

I don't think it's as simple as estrogen = bad because wowsers it's helped with so many awful symptoms I had from low estrogen - especially my brain. And I don't think it's about estrogen dominance, it seems that's not the right way to look at it either. So much as - we have too much histamine for the body to process and detox us from, leading to side effects. And estrogen gives us more histamine, but it's not the cause of the problem in the first place - or every woman would be dealing with this on estrogen.

I had the same experience on a combined pill when I was 21, which is interesting. And I have a history of mild endo. Which is okay at the moment with extra desogestrel progesterone.  ???



Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Scampidoodle on July 07, 2022, 06:38:06 PM
Yes true, oestrogen isn’t bad at all. Tina Peers view is that histamine intolerance and mast cell issues are very common and if she has someone who cannot settle on hrt or has strange symptoms on it, this is usually the cause. In my own case, she did genetic testing and my issues with breaking down oestrogen plus a genetic issue with methylation (40% of us have the same gene) cause oestrogen to not break down and histamine to not get processed at a normal speed. There is usually a root cause. Interestingly my blood tests for oestrogen are always v v low but I’m not in menopause probably very early peri.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Scampidoodle on July 07, 2022, 06:39:20 PM
And no, GP’s know nothing about it nor the highly regarded meno clinic I saw when on the hrt and having problems!
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 07, 2022, 06:46:29 PM
Yes, my Newson GP didn't have much to say about it. Nor any of the other GPs I've spoken to.

What was the genetic test Tina Peers had you do, was it a blood test or a saliva test - could it be done at home, I'm wondering, from afar, or would I have to travel to her!?

I am also early peri-menopause (44yo). I am pretty sure that my symptoms have been sped up by taking desogestrel for so long (9 years) - because it suppresses estrogen levels coming from your ovaries to the early follicular stage by keeping the ovaries kinda dormant. Which is what I needed to do, for the endo - and it worked for that. But I think that, combined with peri, was just too little estrogen for me to get by on causing an early peri-menopause. But I can keep the ovaries dormant with the desogestrel and add the estrogen in with HRT so I still get estrogen - that should work... if I can just not have these estrogen side effects  ;D
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Scampidoodle on July 07, 2022, 06:53:54 PM
The genetic testing was remote, she uses a company called lifecode gx and the test was posted to me. There are various types of tests. I had the oestrogen pathways mapped, methylation and histamine pathways. My histamine pathways were fine (for some people they don’t have enough of the necessary gut enzyme to process histamine) but my oestrogen and methylation was what impacts. I have to take various supplements to support these processes. But of course as I felt well this last year I stopped taking them. Mistake! So slowly reintroducing!

I also see her remotely I don’t live anywhere near any of her clinics. She’s pretty booked now as she now runs a long covid clinic too due to a lot of these symptoms linking with long covid. But there are others at her clinic you can see. Xx
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 07, 2022, 06:57:27 PM
That's great, thanks!
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 07, 2022, 07:09:01 PM
For anyone following this thread at any point, here is a great link I found from Tina Peers website which includes a list of her recommended supplements: https://static1.squarespace.com/static/5a4269f28c56a85fe95206ea/t/5fa6d3044f8f02449aaacea3/1604768517153/Dr+Tina+Peers+-+Histamine+Intolerance+Factsheet+-+Nov+2020.pdf

(If the link stops working, find her website and see if it is downloadable from somewhere there.)
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 08, 2022, 10:16:19 AM
Day 1

The no-yoghurt chia seed pudding clearly needs some work as it was pretty gross this morning  ;D ;D I added coconut milk and a splash of water instead. But it just occurred to me that I can still have milk, so I could try it with that tomorrow. I made it this morning and gave it 45mins to soak the chia seeds - because leaving it in the fridge overnight might make too much histamine.

No coffee  :-\ :'( :'( :'(  I had frothy milk instead. Not quite the same  ;D

Even doing this for 2 weeks seems a tough challenge  ;D
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Scampidoodle on July 08, 2022, 12:25:54 PM
Hi are you still getting the ‘weird chest flutters, anxiety jitters which isn’t actually anxiety’ thing? That’s my worst symptom currently along with the hot flushes/heat intolerance.

I could never get the hang of chia pudding!! X
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 08, 2022, 12:35:39 PM
So the thing is that the symptoms have been getting better the last 5-7 days or so anyway. I do still wake and feel a little bit throbby and fluttery but I have trained myself not to wake more and to go back to sleep - this isn't something I could do before so either I've got better at ignoring it or the symptoms are not so intense so it is possible to sleep through them more. (I think the latter.)

But I do still get these episodes sometimes, yes.

Probably too early to know if the low histamine diet will help. I am really missing coffee and yoghurt  :'(  And a little bit of dark chocolate.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Scampidoodle on July 08, 2022, 01:32:45 PM
Are you in a progesterone phase of your cycle? Wondering if that has improved things x
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 08, 2022, 03:16:28 PM
I'm on continuous and all my hormones are the same every day, so nope...
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Scampidoodle on July 08, 2022, 03:22:10 PM
Ah ok, sorry forgetting you’re on hrt. Are you on continuous as you’re post meno or just worked out better for you? X
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 08, 2022, 03:43:15 PM
Because I have a history of endo and continuous is best for endo sufferers. I was on desogestrel for 9 years before that and rarely bled on it, and I'm still on it, so I think the hope is I continue not to bleed on continuous. If I do get breakthrough bleeding, I'll try the 25/28 regime and have a few days off progesterone but not as long as sequential.

This low histamine diet really SUCKS  ;D I don't even know how I will make it 2 weeks, my goal right now after today is just one  ;D ;D ;D

The main issue is not being able to have tea OR coffee. I am so over peppermint tea after just day 1. I hate chamomile tea (which is also acceptable) and I also hate Rooibus tea (acceptable) - but have got some in, due to sheer desperation  ;D  ;D 

I think coffee is supposed to be better tolerated than tea, so my hope is that I can eventually supplement my way out of this and tolerate coffee and cheese. And if I have to take DAO every day and pay £1200 a year to do that and eat normally, then I guess I will....

Sorry, probably catastrophising and looking at the endless days of peppermint tea that lie ahead.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Marchlove on July 08, 2022, 04:35:11 PM
How about decaf coffee or tea?

https://www.decadentdecaf.com/blogs/decadent-decaf-coffee-co/health-caffeine-histamine-intolerance-does-decaffeinated-coffee-have-less-histamine

Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 08, 2022, 07:18:45 PM
Thanks but it's not the caffeine that's the problem, it's other stuff in the coffee and tea which either block histamine (tea) or contain it (coffee).

I am actually tolerating the Rooibus stuff better than I remember it, so we'll see how that goes...
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Marchlove on July 08, 2022, 07:57:12 PM
Drink tea then!

Caffeine can raise  cortisol, so it’s not just a histamine issue x
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 09, 2022, 07:38:33 AM
Black tea blocks DAO which is the enzyme that gets rid of histamine. It’s worse than coffee which I hope I’ll be able to tolerate eventually.

Last night was no better than any other recent night. Maybe it’s too early to see an effect yet…
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 09, 2022, 04:57:32 PM
Day 2

I am getting better at making something edible without yoghurt for breakfast. I've found an article online where someone successfully used probiotic supplements for histamine intolerance (ie probiotics which don't increase histamine) to make their own yoghurt. Hmmm... I will for sure try that if I end up needing low histamine long term.

Besides that, my lunch consisted of an entire pack of watercress liberally dosed with olive oil and a considerable amount of cottage cheese.  :-X

I have made some good granola though, involving oats, pumpkin seeds, maple syrup and coconut oil. Apples and carrots are my main snack foods...

Feeling a bit more positive about eating this way now.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Kathleen on July 09, 2022, 07:25:55 PM
Hello joziel

You are certainly having to be imaginative with your new diet!  Is green tea a problem I wonder as it supposedly has many health benefits. Perhaps there are cookery books that include recipes for a low histamine diet, a flick through amazon may be worth a shot.

Good luck with your experiment and I will be following  your progress.

Take care.

K.


Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 09, 2022, 08:58:30 PM
Green tea is definitely a no (sadly).

It comes down to - peppermint tea, Rooibus tea, or a babycino(!) - frothy milk with no coffee.  ;D

I've got one cookery book already which gave me a couple of good granola recipe ideas. If I have to do this long-term, I'll for sure be checking out more. But as it's only 2 weeks I can probably get by. Meanwhile my husband is grilling chicken and making turkey mince 'Larb' and there are containers of delicious leftovers I have to resist every time I open the fridge  ::)
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: ElkWarning on July 10, 2022, 08:16:17 AM
I'm reading this with interest.

I also hate Rooibus, but have somehow slightly grown more accustomed to it in my old age.  It's a good carrier for mint (fresh, can't stand peppermint tea either).
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Vicky81 on July 10, 2022, 08:18:24 AM
Hi elk not sure if you've seen...but I've sent yiu a private message hun xxx
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 10, 2022, 09:49:05 AM
Day 3

Last night I had very very minimal throbbing happening, probably the least yet. I thought that was really promising.

However, I did still wake up early. Like, really early - but this could be because I was hot, seeing we're in a heatwave and all. And then this annoying fly kept landing on my head. So I hid under the duvet. Then I got hot again because I had a duvet up to my ears to hide from the fly.

Sigh.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 11, 2022, 03:43:01 AM
Day 4

Still throbbing slightly shortly after going to bed but also a night of complete insomnia. I managed to doze lightly and dream a bit but what seems to be lacking is deep restful sleep. I don’t actually know if I’ve had much of that since starting HRT due to these issues.

So far I’m pretty sure that histamine is causing this but reducing what I consume of it isn’t really helping. Probably because it’s about estrogen causing mast cells to release histamine. Which is a separate process to the gut and histamine…

But I’ll continue….
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: ElkWarning on July 11, 2022, 05:52:51 AM
Hi elk not sure if you've seen...but I've sent yiu a private message hun xxx

Hiya, sorry, I hadn't noticed. I don't do DMs, except (historically) with one person, because I'm worried I won't keep up with them.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: ElkWarning on July 11, 2022, 06:04:47 AM
Joziel

I can see by the time stamp on your post that you were awake in three middle of the night. You say you don't know how much deep/restful you're getting ... Would a Fitbit help? I got one a couple of years ago, just a simple one, initially because of my blood pressure and pounding heartbeat. Amongst other things, it's really helped me to track my sleep patterns. For example, I've been floored since Friday (interview on Thursday, followed by negotiations, dog to vets, daughter had a mishap) and I'm just completely exhausted. It's useful for me to track my sleep patterns and heart rate at this time. So I can see I slept badly on Wednesday, Thursday and Friday; but I can also see I was doing ok with relaxation. Saturday and Sunday, much better, yet still knackered. This is telling me I'll be ok today, however, I could do with a couple of early nights.

Might not be useful for you, but I really like the way my Fitbit acquires data that I can then use to reflect and / or in medical appointments.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 11, 2022, 07:47:33 AM
Thanks but I have an apple watch which I don’t wear in bed  ;D But I know how bad my sleep is at the mo, I don’t think a device can tell me anything I don’t know there.

It could track other stuff but I’m a little afraid to use it for that because using my Kardia device to do an ecg resulted in terrifying results which sent me to A&E - only for the eCG there to be fine.

So running my own tests isn’t going to get me anywhere. If I’m worried about my heart I have to go request referral. My GP said she is not concerned unless I have pain, breathlessness or feel faint.

I did a week long twice a day BP check only a few weeks ago and it was okay but caused a lot of anxiety on my part to do so I’m not wanting to keep checking it. But I do have weirdly raised BP at these times - not hideously high just high for me.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 12, 2022, 01:58:10 PM
Day 5

I am nearly halfway through. I'm seeing zero change in my night time symptoms. Last night I went to sleep easily at 11.30pm (I still always go to sleep pretty easily). I woke up about 3.30am for no understandable reason. I didn't let myself open my eyes and I made myself go back to sleep but, from then on, the sleep was light REM sleep, no more deep sleep, and I woke up pretty much every hour, realised the time and went back to sleep... Sheesh. I wasn't even feeling that throbby last night so it wasn't the throbbing that woke me up. I wake up in the way that I used to wake up at 8am - ready to get up, as if it's time to get up. Only it's 3.30am.  ::)

Meanwhile, in the kitchen, I have gotten pretty desperate. One of my favs at the moment is making frothy milk in the, er, frothy milk maker machine with a squirt of honey added and then sprinkling my low histamine granola in there. I'm not sure if it's breakfast, snack, drink or what but it's tasty...

I've also roasted up some veggies and frozen them immediately so this hopefully will fix the issue of not being able to store leftovers. Everything doesn't lend itself to freezing very well though.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 13, 2022, 11:49:33 AM
Day 6

It's a bit of a sad update today. I had a hideous night. It started well where I was tired and sleepy getting into bed. But, just as I was dropping off, I'd wake with a jump - it was like some deep and primal part of my brain just wouldn't let me 'let go' in the way you need to do to fall into a deep sleep. This happened several times over and over. And then my brain just decided it wasn't going to get to the falling asleep stage again, because look what happens every time you try that... so I laid there awake until 3am. With my hands and body pulsing and throbbing and trembling and my heart beating hard and faster than usual. Not so much the palpitations.

This is probably the worst insomnia I've had because I usually have no probs actually falling asleep, I just wake up a few hours later. And usually even if I can't go into a deep sleep, I can doze. This was just really alert wakefulness until 3am. And I knew I just couldn't go on for another week without trying to change something and fix this. It has now become a crisis rather than just an inconvenience I can fiddle around with.

So at 3am I got up and went into the kitchen and took an anti-histamine. I've never taken one before so I had no idea how I'd react to it. I didn't notice a profound difference but at 4am I was able to fall into a light sleep. The anti-histamine might just have made me a bit sleepy rather than resolve anything else - I was still throbbing and still had a hard and faster than usual heart rate, it definitely didn't immediately restore normality. And that throbbing and hard heart beat lasted right through until 8am as usual.

SO: This morning, I decided to reduce my estrogen to 50. I feel like a failure, doing that. Because my estrogen was only 233nmol on the 50 patch and I wanted to get it just a little higher so it was over 300nmol. And I'd originally gone to 75 and dropped back to 62.5 so this just feels like I've totally lost everything I'd gained now. I can try an increase again, though, if I can stabilise everything else. And maybe it will take me YEARS to increase, I will need to go so slow and cut patches so small(!).

I also got the zinc and quercetin I'd ordered delivered in the post, and I've taken both of those. I'm still on the low histamine diet. So I've kinda been not very scientific now because I've changed multiple variables at once. But that's because I feel like I'm in crisis mode now and if I adjust one thing at a time, this could all take weeks and months - and I just can't go on like this for much longer. The new approach is 'do everything at once to feel better and then (if I ever feel better) try stopping or dropping or changing things'. So instead of add something in, one thing at a time, it'll be drop something out, one thing at a time. But I'll be starting from a place where I feel okay rather than feel like I just can't go on.

I am not sure I'm going to continue much further with the diet. After 6 days on it, you'd think I would be seeing definite improvements and I'm just not. It doesn't mean my issues are not mast cell related - they might still be, but just not gut-and-mast cell related. It might be related to how I process estrogen or to the estrogen causing the mast cells to degranulate and release histamine. If I do start to feel better over the next week, it could now be due to the reduction in estrogen or starting these supplements, and I don't want to end up superstitiously eating this crappy diet just because I think it could be the diet(!). I might even change my progesterone regime now too, doubling the utrogestan to see if more body identical progesterone balances the estrogen.

But I thought I'd write a conclusion to the early end of the experiment...  :'(
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: ElkWarning on July 14, 2022, 09:03:38 PM
That sounds like a horrid night. So sorry you haven't got to where you want to be ... Yet ...

Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Pippa52 on July 14, 2022, 09:16:27 PM
So sorry joziel.  The nights feeling like that are really vile and I know how grotty they can be.  Hopefully you dropping your patch strength down to 50 might really help.  I am starting to improve on a lower dose of oestrogen.  Far from right yet but baby steps. Hope so much you have a better night tonight xx
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 15, 2022, 06:17:55 AM
Day 7

So I finished my diet trial on day 7. And also started zinc and quercetin and reduced my patch to 50.

I’ve now had two nights at 50 and things are much better. I fall asleep easily and I stay asleep but I still wake early around 6am with throbbing and pulsing against the bed and I think palpitations. I don’t really understand why this is happening every single night. I am much less jittery on the 50 but I did have this before on it and still getting it now. Starting to lose hope because I really don’t want to reduce further.

The only two other things I can think of is to try this progesterone change and to ask to try the gel or spray instead of patches.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Gnatty on July 15, 2022, 07:27:21 AM
Hi Joziel, your sleeping better on a reduced dose of oestrogen makes sense as one of the symptoms of oestrogen being too high is the inability to actually fall asleep. I have experienced this and it's absolutely awful,you feel like you are never going to fall asleep again! So pleased you have got some sleep now.
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: joziel on July 15, 2022, 07:37:31 AM
Thanks gnatty it’s weird isn’t it?

My blood estrogen level was only 233nmol on the 50 so you’d think I’d be good to increase. But it seems my body doesn’t like it. I don’t understand why, because my own levels in my 20s and 30s must have been that high or higher 🤷‍♀️

I really hope these night time palpitations and early waking stop. I’m going to do an experiment on my next patch change days and take the patch off early evening time so I have a night without any patch on - and see what happens then. I tried that before but left the 12.5 mini patch on, which I was using then to get up to 62.5. It didn’t make much difference. But this time I’ll take it all off and see…
Title: Re: 2 week low histamine diet trial - keeping me accountable!!
Post by: Nicodemus on July 15, 2022, 08:12:47 AM
No advice but huge sympathy. I'm glad the insomnia has at least eased - I know how horrible that is.