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[laszla]

Gilla, for years I've followed at a distance an Italian doctor, Attilio Speciani (a real doctor, anaesthetist and surgeon, also registered in UK at GMC) who has a terrific online resource called Eurosalus that among many other things looks at interaction between diet, hormones, allergies, inflammation, and more recently long covid.
Unfortunately it's in Italian only but if you have the patience it might be worth spending a little time with google translate just to get some starting points for further research.
I've had a look at a few pages and a few quick relevant points with links are:

Some forms of urticaria are immune to the anti-histamine approach which is a dead end in those cases and many people fall into this category.
DAO levels are important (supplements are available though no good for vegans) and glycation - aka glycolisation though they aren't identical - is a possible example of various inflammatory processes that are too often reductively attributed to histamine intolerance and that cause these horrid symptoms.

https://www.eurosalus.com/Infiammazione-da-cibo/Quando-si-deve-o-non-si-deve-controllare-l-istamina-degli-alimenti

In turn, said glycation according to Speciani and others he cites is a strong contributing factor to long covid
https://www.eurosalus.com/Covid-19/La-dolce-minaccia-che-nutre-il-Long-COVID

For those that have access to London and resources, relevant tests are available.

Some of this might also be useful for you Reb though you've clearly done a real deep dive into it all.

p.s There are also particular strains of probiotics thought to be helpful (and these could help anxiety symptoms)

[Gilla999]

Thank you Wren song - I haven't gotten around to trying thyroxine (although my results continue to get worse) just because I've been trying to get off the Mirtazapine and streamline things first. I really appreciate the virtual hug.

Just like previous days I feel absolutely fine all day and then at 4pm like clockwork the thumping heart starts (I also am skipping beats all the time) and it's very hard not to let that "turn into" anxiety. I have no idea what's causing it... whether it's histamine at this time of day, or the valium from last night wearing off, or just general anxiety about sleeping now. I've taken 2mg valium and it settled down a bit - maybe I just have to accept I'm stuck on that now 

CLKD what time of day do you take your beta blockers? As the thumping and irregular heart is my primary anxiety symptom I'm wondering whether I should give it another go.

Thank you laszla for that info, I plugged it all in to Google Translate! I have to be honest, I don't believe my situation is a problem with food at all. I've been absolutely fine my whole life until either covid or my hormones triggered this all off in the summer, and even following a low histamine diet doesn't make any difference. I also tested positive for auto immune urticaria which is why Antihistamines don't work for it (or I assume the raft of histamine like problems that accompany the condition regardless or not of whether there are visible wheals on the skin.) It's all very confusing and hard not to let it bring you down x

[CLKD]

Initially I was prescribed 40mg 3 times a day for 4 weeks, dropped down to once a day eventually, at night: to ease any cortisol surges in the early hours = terror feelings.

Some people don't get on with them.  2mg is nowt, you are certainly not stuck!  However, 1 can get bounce back anxiety when we stop Valium .........

I found relaxation therapy in bed helpful, the idea is to tense the toes and hold: relax.  Working all the way up the muscle groups towards the abdomen, I never got any further. 

Confusion can be that: confusing, worrying and stressful.  Don't take any more Valium, if you don't sleep accept.  Read.  Listen to music.  What dosage have you got to use?

[Gilla999]

Terror feelings is exactly it. My body thinks it's being chased by a serial killer and I have no idea why, but it makes sleep impossible.

Thanks for the advice CLKD and also for the reassurance. I have a tendency to catasrophise which certainly isn't helped by physical terror feelings! Worst case I end up stuck on low dose valium, not the best but worse things have happened to people!

@wrensong I have sent you a PM regarding thyroid, hope that's OK! Xx

[Wrensong]

Hi Gilla yes of course a PM is fine.  Will answer that way
Wx

[CLKD]

What dose of Valium do you have to hand?

Remember that our bodies are equipped to fight or flee: knowing that however doesn't lessen the terror that panic attacks bring.  Those early morning cortisol surges were dreadful, I would wake, have to get out of bed and then sit.  I think that dreams didn't help because I had no rest from the problem 24/7 

Because I knew that valium eased symptoms: which meant that I had relief for several days, sometimes weeks depending on the surrounding stressors, I learned to use it as necessary: the night B4 an event.  I never had to take the 'extra' dose the next day, though when I fell asleep mid afternoon MinL was less than impressed  .  She would talk at me trying to keep me awake.  Yep it was probably rude but at least she had her son with her which, without valium, wouldn't have happened ;-). 

Used wisely on an as necessary basis it can be a life saver.  I never used it to sleep, preferring anti-histamines, though now they are made as 'non drowsy'  .  Sea sickness medication at night helped too.  Getting 1 good night of sleep seemed to lead to several nights which was such a relief!

[Ali P]

Hi
So so sorry you’re having these problems
One thing I find that helps with anxiety and the physical aches that I get with  is a cold shower if you can stand it. About 4 minutes.

. I’m newish to the forum but i do realise you cannot post who you used privately to consult about histamine etc   How do you message me ?  I have had similar problems and currently can’t seem to find anything to eat the doesn’t cause jittery anxiety and in one case convulsion   Losing weight dramatically It could be estrogen dominance but could also covid who knows. Progesterone Started to give me urticaria and also bad depression. Don’t take it anymore. Had hysterectomy so don’t need it but thought it might stop estrogen dominance
  I’ve looked at trying to get referral to an immunologist. But would dearly like someone who knows about histamine   Can some one help with this please

I really hope the injection gets you back on track sending a hug. It’s rubbish isn’t it and that’s bro g polite x

[Wrensong]

Hi Ali P.  Not sure whether you have already had an answer to your question via PM but if not, the UK doctor often cited in connection with histamine intolerance is Dr Tina Peers.  I have not seen her myself, but have heard podcasts of interviews with her.  There is also info on the condition on Newson Health's website.
Wx

[Ali P]

I’m with Newson health. My doctor there not to sure about it but I’ve started with their nutritionalist   Thanks for the Tina peers. I’ll look her up

[Wrensong]

You're welcome Ali P .  Good luck with it. 
I believe RebJT has mentioned Dr Peers on other threads if you'd like to have a look at her posts or PM her.
Wx

[Gilla999]

CLKD, I was prescribed Propranalol today for my relentless palpitations. I've taken one 10mg and it has calmed them (and the associated anxiety) down a bit. However I'm still super nervous about them affecting my sleep  - most of the problems I have are in the evening, so I will have to take another one in the evening.

Just wanted to re-clarify, that you don't generally experience insomnia as a result of taking Propranalol?

I did a bit of research online and saw that Atenelol has less impact on sleep than Propranalol but my GP said he wanted me to try this first, as Atenelol isn't specifically licensed for anxiety. He said he'd never had anyone complain of sleep problems caused by Propranalol....

[CLKD]

What is the advice on when to take Propranolol?  I took it at night to ease the early morning anxiety surges.  Down to 20mg eventually.  Never had problem with sleep, if I'm not going to sleep then I either have an hour of deep sleep, then awake for hours.  Happens about twice a month  .

Give the medication time to work ;-).

My neighbour reacts badly, i.e. with high levels of agitation. 

[Gilla999]

Thanks for this CLKD - it seems to have given me a blindin headache, which isn't the best of starts!

Advice was just to take 10mg up to 4 times a day as necessary (definitely don't plan on taking that much!).

[CLKD]

I had back ground headaches after several years which is why I reduced the dose.  Stopped in March 2020 as I didn't know whether it was the drug or Covid  .

Keep hydrated as headaches can occur if the body is dry. 

[RebJT]

hiya

How you doing Gilla?  One thing to mention about propranolol is it slows T4 to t3 thyroid conversion and I know there's a question mark about your thyroid (and possible autoimmune thyroiditis?  Are you positive for thyroid antibodies?). So it'll lower your thyroid levels even further.  As you know too much or too little thyroid can cause palps, anxiety and insomnia (as can low iron, which tends to dog us thyroidy, whacky period women, it's all fun, fun, fun!).  I have had a much easier time with meno / HRT and general baseline wellness now both my thyroid and iron are well controlled, stable and optimal.

I was prescribed propranlol for Graves disease and very serious hyperthyroidism (I actually had Graves and Hashis together, this is a living hell I wouldn't wish on my worst enemy as it's very hard to control) but one thing to perhaps rule out is thyroid, as if you do have autoimmune you'll be having waxing and waning attacks of antibodies on the thyroid tissue (causing spikes and troughs of thyroid levels) and this in and of itself (let alone peri, or histamine etc) can make us feel all over the show - anxious, sleepless, jittery, wired, tired.  Nine out of ten thyroid patients are women, and nine times out of ten, it turns up at menopause (thyroid hormones control the menstrual cycle).

Not saying this to worry or confuse, just thinking that if you could at least take one thing out of the equation it might be easier to then work out where to go next.

Really hope you are managing to find your way back to a place where you can regroup, I've been there, it's truly the worst.

Love

Reb
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