Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Gilla999]

Sorry in advance for the long post - I've gone from having a great 3 months where everyone said I was back to my old self, to the worst I've ever been within the space of 3 or 4 weeks, and I'm in a complete mess. I realise some of these topics are outside of the forum 'remit' in terms of standard meno, but I'd really appreciate anyone's thoughts and advice, as it is all connected to my Peri.

In the summer I started suffering with chronic severe urticaria - it was absolutely debilitating. My doctors don't know what caused it - some of the symptoms started the day after the booster, but it properly came on 6 weeks after Covid. All of that may or may not be connected. What I know for sure though, is that it is 'triggered' either by an increase in my HRT, or when I ovulate and my own Estrogen surges. Symptoms reduce when I reduce my HRT, however I then get a return of my original Peri symptoms of night sweats and insomnia.

I had 6 monthly Xolair/Omalizumab injections which turn off the allergic response in your body, and this worked really well for me and the problems went away. I had a great 3-4 month period. However you have to stop the injections after 6 months to see if it returns (80% likely it will) and so I stopped these in November. Since mid December although the visible urticaria didn't return, I've had a massive rush/return of histamine problems - burning ****ly skin, flushing, eczema where I apply the HRT and on my face. I also started suffering from horrendous anxiety, the kind of which I haven't had for years and shouldn't have now I'm on two different Antidepressants. Gut-wrenching feelings of dread, can't eat, can't sleep, all I can do is cry kind of anxiety. Lying there wide awake sweating with your heart pounding like you're being chased by someone. This has been going on since mid December, with a random break around my period of one week. The only thing that helps in these situations is Valium, and I've taken 4-6mg at night on 7 days out of the last 16 days. I'm now absolutley terrified that on top of everything else I've developed an addiction to valium, but I'm in a complete mess and it's the only thing that allows me to get any sleep at all. It's been 4 weeks now where I've had approx 4 hours sleep a night and I'm completely done in.

I wondered if there is anyone who has taken or does take valium that can advise me if I would be likely to be addicted to it? The anxiety rushes that I'm getting from about 4pm onwards do seem to accompany a rush in histamine symptoms (****ly itchy skin etc) so at least in the beginning I am sure the crazy excess histamine was the cause, but now I'm worried I've added a valium addiction on top of it.

I restart my injections on Monday (having to pay £1,100 for one injection becauase the NHS are so slow) so that should hopefully help with the histamine issues, but I wondered if anyone had any thoughts or advice or even just some support, as I'm feeling completely alone and in a really bad place. Thank you xx

[Flossieteacake]

Hello Gilla. I really am very sorry to hear of all you are going through. I had not heard of urticaria and read up on it. It sounds really distressing for you. I cannot bare being itchy. I do wonder if it is connected to Covid as I notice people seem to get different health issues after getting Covid. I have asthma after having Covid.

I am not sure if this could help but have you tried cutting out high histamine foods for a month? I had a lot of terrible itching and in desperation I cut out high histamine foods for one month. This helped me a lot. I then slowly reintroduced the foods and found I can no longer eat banana or peanuts. I apologise if this is useless advice but just thought I would mention it to you.

I can understand your concerns about taking Valium long term. I was wondering if something different such as a mood stabiliser would be an alternative as this can be taken long term and help with sleep. Why are you on two antidepressants rather then one and one anxiety medication?

It is really good to hear you will have another injection on Monday as I can see that is so helpful for you. Although I feel my advice may be useless I am here to support and listen. I really am sorry you have all this to deal with.

[CLKD]

Could you list foods with histamine Flossieteacake?

Antidepressant medication is to ease symptoms of depression Gilla999.  What have you been prescribed and have they helped over the years?  A few do ease anxiety.

 I've taken 4-6mg at night on 7 days out of the last 16 days.  what size tablets of Valium do you have access too?  They are as low as 1mg which GPs can use.  The dose is usually 5mg or 10mg for 3 nights with a break - by which time the anxiety should be under control.  Cortisol - the waking hormone - was my largest problem, I would wake in the early hours terrified.

Often worries about withdrawal are worse that easing off.  In the 1990s I was prescribed 10mg 3 times a day for a month which helped me during a bad time; dropping down to 10mg at night then 5mg twice a day.  Then 5mg as necessary which I would take the evening B4 an event that I was unable to get out of. 

My GP has prescribed betablockas which were successful, taking 40mg at night for several years then 20mg, again for several years.  I now have an emergency tablet to swallow when anxiety floors me.  Anxiety has taken away many days of my Life 

Half a day at a time?  Try not to look too far forwards.  This too will pass. 

[Flossieteacake]

Could you list foods with histamine Flossieteacake?

Antidepressant medication is to ease symptoms of depression Gilla999.  What have you been prescribed and have they helped over the years?  A few do ease anxiety.

 I've taken 4-6mg at night on 7 days out of the last 16 days.  what size tablets of Valium do you have access too?  They are as low as 1mg which GPs can use.  The dose is usually 5mg or 10mg for 3 nights with a break - by which time the anxiety should be under control.  Cortisol - the waking hormone - was my largest problem, I would wake in the early hours terrified.

Often worries about withdrawal are worse that easing off.  In the 1990s I was prescribed 10mg 3 times a day for a month which helped me during a bad time; dropping down to 10mg at night then 5mg twice a day.  Then 5mg as necessary which I would take the evening B4 an event that I was unable to get out of. 

My GP has prescribed betablockas which were successful, taking 40mg at night for several years then 20mg, again for several years.  I now have an emergency tablet to swallow when anxiety floors me.  Anxiety has taken away many days of my Life 

Half a day at a time?  Try not to look too far forwards.  This too will pass.

It is best to find it by googling as there is so many and some sites have conflicting information.

[CLKD]

I wouldn't know where to begin 

[RebJT]

Hi Gilla

Just to post a bit of solidarity, as I'm having similar but nothing like as severe issues.

This really does sound like HIT doesn't it or long covid, or whatever label we can give it.  Great news on the jabs ,and that will give you good information.  If that cracks it, can you find a HIT sympathetic gyane to write to your GP and tell them to give these to you pronto on the NHS???  Sounds like this is the biggest bit of evidence you'll have that it's mast cells, if that jab turns it all off again?

As you know I had very low dose valium when the wheels fell off Qlaira and I managed to sleep on 1mg, and I used it for a very short time.

Low dose histamine foods - I used the Swiss List and I confess I lived on apples, lettuce, steak, porridge with coconut milk and not a lot else for a while.  Find your safe foods and stick to those.  It's boring as hell but emptying that histamine bucket really will help.  You need to be super strict with this.

Something like toxaprevent or enterosgel (on amazon) will help - it pulls histamine out of the gut.  I also take a DAO enzyme and digestive bitters.

Symprove probiotic helped me too. Cold showers.  Long gentle walks. Anything you can do to turn this 'cell danger response' off and get your nervous system to come down off panic stations.

Some supplements help - Neuroprotek (I took the low phenol version), or quercetin, magnesium.  Ginger tea - grated ginger root in boiling water as strong as you can stand it.  Or the ginger shots you can get from M&S, massively anti histamine.

Also some of us are slow oestrogen metabolisers - this can take a bit of time to figure out and needs a professional steer - but I take organic brocolli seed oil to help oestrogen clearance.  I've done all the genes thing with a practitioner, I actually have no genetic reason for my histamine issues, but I do have other issues that interact on E clearance and methylation that makes me prone to excess histamine (this is a long term thing for another day, but perhaps bear in mind from a long term recovery point of view)

It's truly the PITS, you have my sympathy and I'm back in the weeds now trying to figure out how to settle my post covid symptoms after two years of painstaking effort to sort the histamine and settle on sequi, I really do get it.

Sorry for random post, I'm jumping around a bit, but the best thing I ever did is keep a spreadsheet, I'm up to nearly 900 days now, every single day I write down what I take, and if I change anything at all (food, supplements, HRT anything) and it's been a god send for going back and working out what's changed.  I track my cycle, sleep, bleeds, symptoms, the lot.  It's so hard to think sometimes and this has saved my bacon more than once.  Log everything, every day. 

Hang in there, happy to hold your hand once I'm off the deck myself!

Reb
x

[Gilla999]

Thank you lovely people for your replies. I live on my own / far from friends and family etc, so when you're going through a crisis (of which I have had a few since lunging into Perimenopause!) it can feel really isolating. I am so grateful for this forum!

Flossie, I have tried the low histamine diet but it hasn't really done anything. I agree that Covid could potentially be the root cause (my consultant said this) but what's also definitely true is that my Estrogen level (both naturally and HRT) seems to trigger the histamine issues when it gets high.

I take Sertraline 50mg and am currently slow tapering across from Mirtazapine to Trazodone - I'm down to about 2mg of Mirtazapine which is tiny, and I take 50mg of Trazodone. (Guidelines say you don't need to slow taper, but my body/brain seems to be super sensitive to medications and changes etc so I have). They are all different classes of Antidepressants and safe to take at the same time (originally prescribed by a Psychiatrist at the start of Peri when I thought I was going mad from 3am insomnia, who I no longer see). These medications have only ever been to treat 3am insomnia brought on my Perimenopause - I don't suffer from depression and until these last 4 weeks I had only ever suffered from anxiety the day after not sleeping. I have tried temporarily upping the dose of Trazodone but it hasn't helped in the last 4 weeks with this gut-wrenching, heart-attack, dread feeling anxiety that causes me not to get to sleep. And not being able to get to sleep is a totally new thing for me, usually because of the Trazodone I am out within about 2 minutes - it definitely feels like something chemical or physiological is causing it.

Reb thanks for your lovely words - you always describe it so accurately. "Danger response" is exactly it... my body seems to think it's being stalked by a serial killer and I have absolutely no idea why. Interesting that you keep your diary on a spreadsheet as I've been using the calendar on my phone and running out of room for notes! I'm sorry you're going through such a rough time too - I feel so particularly frustrated at coming off the back of 3-4 months where I genuinely felt like I'd turned a corner, and I'm sure you feel the same post Covid. It gets hard emotionally to keep bouncing back every time.

Thank you again ladies for your words of support, they really do mean a lot xx

[Flossieteacake]

I wouldn't know where to begin 

What I did was google 'High histamine foods' and then had a browse.

[Flossieteacake]

Thank you lovely people for your replies. I live on my own / far from friends and family etc, so when you're going through a crisis (of which I have had a few since lunging into Perimenopause!) it can feel really isolating. I am so grateful for this forum!

Flossie, I have tried the low histamine diet but it hasn't really done anything. I agree that Covid could potentially be the root cause (my consultant said this) but what's also definitely true is that my Estrogen level (both naturally and HRT) seems to trigger the histamine issues when it gets high.

I take Sertraline 50mg and am currently slow tapering across from Mirtazapine to Trazodone - I'm down to about 2mg of Mirtazapine which is tiny, and I take 50mg of Trazodone. (Guidelines say you don't need to slow taper, but my body/brain seems to be super sensitive to medications and changes etc so I have). They are all different classes of Antidepressants and safe to take at the same time (originally prescribed by a Psychiatrist at the start of Peri when I thought I was going mad from 3am insomnia, who I no longer see). These medications have only ever been to treat 3am insomnia brought on my Perimenopause - I don't suffer from depression and until these last 4 weeks I had only ever suffered from anxiety the day after not sleeping. I have tried temporarily upping the dose of Trazodone but it hasn't helped in the last 4 weeks with this gut-wrenching, heart-attack, dread feeling anxiety that causes me not to get to sleep. And not being able to get to sleep is a totally new thing for me, usually because of the Trazodone I am out within about 2 minutes - it definitely feels like something chemical or physiological is causing it.

Reb thanks for your lovely words - you always describe it so accurately. "Danger response" is exactly it... my body seems to think it's being stalked by a serial killer and I have absolutely no idea why. Interesting that you keep your diary on a spreadsheet as I've been using the calendar on my phone and running out of room for notes! I'm sorry you're going through such a rough time too - I feel so particularly frustrated at coming off the back of 3-4 months where I genuinely felt like I'd turned a corner, and I'm sure you feel the same post Covid. It gets hard emotionally to keep bouncing back every time.

Thank you again ladies for your words of support, they really do mean a lot xx

I find peri very isolating too so please do continue to post so we can all support you. It is good you tried the low histamine diet so you can at least rule that out.

I have also found I need to taper really slowly despite being told I will not react to just stopping antidepressants so I can understand that. It seems some of us are just more sensitive to medication and any changes.

Sending you a virtual hug.

[RebJT]

Gilla

Just to echo the others, HANG IN THERE.  There is always a way, there is, and you'll find it.  It's so hard not to panic and make rash changes.

From my interactions with you I'd say (like me) you were histaminey before covid, and now Covid has accelerated or thrown you into chaos.  Bear in mind this does settle as well but when you feel you are being chased by an axe weilding maniac, I do appreciate this is hard to do, as you'd literally chop your own arm off to feel better NOW.

Hang on for that jab, that's your biggest clue as to what is happening, if that tamps it all down then you KNOW it's mast cells.  So you've got two days to get through until then, and you can do that.

If you can just try and switch off, do what you need to do, do a bit of reading, but I've found when I'm in that awful place, it's hard to think straight, so perhaps don't try too hard.

You're going to be OK, I promise.  I'm about to walk the dog, best I can manage right now!

Reb
x

[Wrensong]

Hi Gilla999, I'm so sorry to hear what a horrible time you're going through.  I can't add much to the replies you've had so far, but just wanted to ask you whether you feel tapering off Mirtazapine could be contributing to the resurgence in your insomnia & histamine type symptoms?

am currently slow tapering across from Mirtazapine to Trazodone - I'm down to about 2mg of Mirtazapine

I'm sure you must know this, but just in case, as well as its antidepressant effects, Mirtazapine is a potent antihistamine, which is the factor said to help with sedation when taken at low doses (at higher doses other properties such as the stimulating effects on adrenalin are said to come to the fore, sometimes even contributing to insomnia).  The consensus seems to be that around 7.5mg is optimal for treating insomnia.  So I'm thinking as you're down to around 2mg its effectiveness as a sedative (and) antihistamine are now probably minimal. 

There is a great deal of literature on Mirtazapine & some of it seems conflicting, for instance saying the sedative effect wears off over time, but I'm not sure whether in some cases this could be related to its being titrated up to higher doses in those patients for whom it's primarily being prescribed for depression rather than insomnia, so that it becomes stimulating rather than sedative.

There are a couple of (rather unsexy - sorry) links & extracts here that refer to its antihistamine properties, but there is loads more if you want to look into it further. 

https://www.psychdb.com/meds/antidepressants/nassa/mirtazapine

"Why Do Lower Doses of Mirtazapine Cause More Sedation?
Mirtazapine acts mainly on 3 receptors: histaminergic, noradrenergic, and serotonergic receptors. However, at low doses (e.g. - 7.5 mg), mirtazapine has a higher affinity to (and thus preferentially blocks) the histamine-1 receptor, compared to the other 2 receptors.[2][3] At higher doses, this antihistamine activity is offset by increased noradrenergic transmission, which reduces its sedating effects."

https://smpdb.ca/view/SMP0062885

"Mirtazapine is a tetracyclic H1-antihistamine. H1-antihistamines interfere with the agonist action of histamine at the H1 receptor and are administered to attenuate inflammatory process in order to treat conditions such as allergic rhinitis, allergic conjunctivitis, and urticaria."

You don't say why you are tapering off Mirtazapine (I think - sorry if I've missed this) so if not because of undesirable side effects, I wonder whether staying on it for now, perhaps at the 7.5mg dose they cite as optimal for sleep is something you might want to consider, in discussion with your doctors of course.

I very much sympathise with the insomnia as this is a very longstanding problem for me & like you I had a frustrating time of it during peri trying to follow a very restrictive histamine reducing diet to little effect.  RebJT is way more knowledgeable than me on HIT & I know from her posts she's also sadly suffered horribly with it.  I hope you both manage to find ways of minimising these horrible symptoms during the difficult peri years & can only say try to hang on in there as things do get better with greater stability postmenopause.
Wx

[CLKD]

Tnx Flossieteacake 

Gilla999 - these forums are great for connection and sharing of experiences.  Even though I understand what causes the panic attack, all the knowledge in the World won't stop them flooring me    .  Eating little and often helps.

When panic over takes me I can't think of anhything, nowt distracts me ......... it hits and that's it until the emergency medication kicks in.  Occcasionally a medic will ask whether I need to continue with my regime, if I could roar you would hear me from. here  .  I suppose they are ticking boxes?  Do U need to continue with ADs?  Perhaps an anti-anxiety pill to take when necessary would suit or the Betablocka instead of?

I used to wake up to see whether I had dropped off to sleep  .  1 night I decided that I hadn't died from lack of sleep nor had I made dreadful mistakes at work ....... I slept a lot better after that.  When I have a 'bad' night it can be anything from not feeling sleepy; from an hours deep sleep, waking and that's it; or waking around 5.30 (bladder ) and not getting back!  Busy involved dreams cause me to feel knackered most mornings  but once out of bed, my head wakes up.

[Gilla999]

Thanks ladies for your helpful replies. I probably sound like a wet blanket, but when you're feeling fragile they really do help.

Wrensong, lovely to hear from you    You're right on the Mirtazapine and I have also wondered whether the taper of this could have caused or contributed to the huge histamine issues. It's been a perfect storm of coming off it + Covid + high histamine from too much HRT. Or perhaps the Mirtazapine was 'masking' the allergy issues I have with HRT all along, as I was on 30mg of it when I started HRT. I guess I'll never know. I've wanted to come off it forever purely because of the weight gain - in every other way it has been a wonder drug for me, and I find it better than Trazodone in terms of sedation / next day. But the chronic weight gain I had from it + going onto HRT (2.5 stone in total) really destroyed my life. I had been thinking this morning about raising it again to see if that helped for the sleep and it can't hurt for the histamine problems either. I really just need to get back on the straight and narrow and bide myself some time so I can reduce my HRT, which I (rightly or wrongly) really do believe will stop these histamine issues long term. It's a difficult one with the Mirt though, as I have worked so hard at a painfully slow taper that's taken years.

CLKD, when you talk about emergency medication / anti anxiety pill - do you mean something like Propranalol? I did trry that a couple of times a few years ago and it worked well on anxiety but unfortunately Beta Blockers are known to cause insomnia and particularly as I experience most of the problems in the evening so that's when would need to take it, it's a bit of a no-no for me. If there's anything else though I'm all ears   

[CLKD]

Propranolol has never kept me awake.  It does however send my neighbour loopy ...... agitated, pacing, suicidal thoughts. 

It should be taken on a continuous basis, not 'as necessary'.  Bach flower mouth spray can be useful, I have used it and never thought whether it is working/not.  The emergency medication begins with an "L" I think: it either enables me or sends me to sleep for several hours. 

[Wrensong]

Gilla, you don't sound like a wet blanket at all & I completely understand why you've been tapering off Mirtazapine.  It is unfortunately well known to induce weight gain in some people so I'm sorry to know it had such a bad effect on your life, especially if you found it very helpful in other ways.

I can't remember whether you're on thyroid meds, but think I recall hypothyroidism in your family history & that you had a trial of Thyroxine at one time?  Is your thyroid function OK now?  I'm thinking if that's possibly developing slowly in the background, that won't be helping any tendency to gain weight.  Along those lines, I agree with CLKD that Propranolol can be helpful for anxiety but if it didn't help your sleep another reason to avoid it is that it reduces conversion of T4-T3, which won't help if you are trying to lose weight.

Another thought wrt possible hypothyroidism if it's in your family, you'll know that if you have a tendency to slow transit that won't be helping with the histamine control.

Wish I could come up with something more helpful.  Meanwhile  I feel for you.
Wx