Tag Archives: hormones

hEDS update

While my MCAS has been really good lately, the same can’t be said for my Ehlers-Danlos Syndrome and I have been in a huge pain flare since the end of 2019.  I have no idea what set it off and I can’t seem to get out of it, which is massively frustrating.  It’s probably hormone related but I don’t know that for certain and not having a medical professional to call for advice at times like this leaves me feeling like I’m floundering alone in the dark.  Which I am, let’s face it.

The pain is concentrated on my hips, SI joint and pelvis.  I’ve had issues with all three in the past, but usually if I wear my SI belt constantly, rest up and use my crutches for walking it will eventually settle down.  This time, though, none of that is really helping.

Nights in bed are the worst.  I haven’t been able to lie, let alone sleep, on my back or front in years as my back is way too painful in those positions so I’m a side sleeper.  But now if I sleep on my right side the pain in my left hip is unbearable, plus my right arm goes totally numb and if I sleep in my left side my left leg goes totally numb to the point where it’s actually painful.  *Sigh*.

I’ve tried taping my hips and wearing my SI belt while sleeping and although it does help a bit it’s not effective in reducing the pain to the point of being comfortable.

In addition, when I was first diagnosed with hEDS ten years ago I was having constant issues with my elbows, wrists and hands.  It took a couple of years but eventually when I started taping and found some kitchen aids to help my hands things settled down and I haven’t had any significant pain for a while.  Until this year, when for some reason it’s all flared back up again.  My right elbow in particular is sooooo sore getting dressed is like a daily form of torture and as I’m typing this my hands are protesting loudly :-/ .  I’m taping and bracing every day but nothing seems to be improving.

Hand in hand with the pain is severe stiffness which is painful in itself.  It started more than a decade ago but has ratched up a notch or ten in the past twelve months and my range of movement is diminishing by the week.  When you’re used to being hypermobile, being stiff as a board is totally weird and I can’t even bend down to put my shoes on let alone wrap my legs round head like I used to 😉.

Add to this my often daily migraines and my body is shouting to me that it is NOT HAPPY *stamps foot*.   I’m trying to placate it with Pringles and Haribo Gold Bears but the only part of my body liking those, it seems, is my waist line 😁.

If any of my middle aged Zebra readers have any ideas what’s going on or any advice on how I can help the situation please let me know because it’s irritating the shit out of me now!  Bare in mind, though, that we are still in lockdown and in any event I have anaphylaxis to acupuncture, massage and osteopathy and zero money so my options are limited :-/ .


MCAS Update

Anyone who has been following my blog for a while knows that my mast cells hate stress.  My number 1 mast cell degranulator is drugs.  My number 2 is high histamine foods.  But my number 3 has always been stress of any kind.

When I’m under acute stress I flush, get pins and needles, severe brain fog, can have what feels like a seizure, oesophageal spasms which make me retch and retch, severe nausea, painful bowel cramps and just feel really unwell.

When I’m under chronic stress I break out in hives, itch all over, stop sleeping (histamine is wake promoting), stop pooping, start peeing like a racehorse particularly during the night, my pain levels significantly increase due to muscle spasms particularly in my back and I feel generally exhausted and run down.

Virtually the entire world has been under stress during the pandemic.  Acute stress in the initial weeks, and chronic stress as the months have worn on.   In the initial few weeks I was also dealing with my acutely unwell Dad and the bed bugs in my house, not to mention staying up til midnight each week to try and get a grocery delivery slot on which 5 vulnerable people were depending for food, and my sister-in-law started her chemotherapy about which we were all concerned.  It was a LOT to be dealing with, when I am unwell myself and on my own with zero support.

3 ½ months down the line I’m still doing shopping for 5 people, am having to solely look after my parents while having no help in my own home, eg. my cleaner, and am helping my very disabled friend with all sorts of issues.

By now, I fully expected to not be sleeping, be covered in itchy hives, be peeing for England, to not be able to poop and to be utterly exhausted.  And I am utterly, utterly, exhausted, but few of the other symptoms have materialized.  In particular, I have not had a single hive this entire time and am sleeping like a baby 😯.  It’s nothing short of miraculous.  My pain levels, however, are much worse and I have had a very sore throat and swollen glands for the past few weeks but these are symptoms I associate with M.E. and hEDS, rather than MCAS – I don’t get flu symptoms as part of my mast cell disease and the pain is very different to the pain from hEDS.  In fact, my hEDS is particularly bad at the mo, but that’s a post for another day!

Looking back, I’ve had mast cell disease since the day I was born but it didn’t explode and become a life-threatening issue until I was 44 – right around the time I began peri-menopause and my hormones started roller-coasting.  I am now transitioning into Menopause and am wondering if my now almost total lack of hormones is helping to stabilize my MCAS?  I can think of no other explanation as to why my mast cells aren’t having a total hissy fit to the massive stress I’ve been under during the lockdown.

Having said all that, there is one symptom which has been much, much worse lately and that is my migraines.  I am being tortured on an almost daily basis.  However, 6 weeks ago I changed the pillow on my bed so am wondering if my new pillow isn’t supporting my neck while I sleep.  I might look into ditching it and getting a proper foam support one instead.  Watch this space for the results of that.

I know that I will never be free from MCAS as I’ve had symptoms since I was a baby.  However, if it reduces to the point of just being an occasional or mild problem as it was when I was a child and young adult I’ll be a very happy bunny and it would be an interesting topic for researchers to look into.

Menstrual Migraines

I started charting my migraines in tandem with my menstrual cycle in 2009 in the hopes that I could find some kind of pattern.  Below is my first chart and it turns out that in 2009 I had an almost permanent bad head and migraines which often lasted 3 days straight 😦  The numbers along the top of the chart are the days of my menstrual cycle.  Down the left are the months of the year.  The grey blocks on the left are my actual period (as you can see it didn’t last long!), and the grey area on the right just marks how long my cycle was that month, eg. in Dec08 (the first entry) my cycle was 27 days long and in Jan09 my cycle was 29 days long.  It’s clear from the chart that I hadn’t started peri-menopause yet and my cycles were regular as clockwork at between 27 and 29 days.

M=migraine h=headache

In 2013 I started my low histamine diet but I was so ill at the time I wasn’t able to keep my charting up, so the next set of data I have is from 2015.  I think you can see that after 18 months of eating low histamine foods my migraines have improved substantially and my headaches have disappeared completely, yayyyy 😀  However, you can also see that I am now in peri-menopause.  My periods often last a day longer while my cycles are getting shorter sometimes down to 21 days.

I also think it’s clear from the chart that my migraines are now linked to my menstrual cycle with migraines worse during bleeding, mid cycle and again just before the cycle ends and this pattern has continued.

Below is 2017s chart and as you can see there’s about an 80% chance of me having a migraine while I’m having my period which, as the peri-menopause progresses, are getting longer still having gone from two days in 2009 to sometimes five days in 2017.  There are then zero migraines in the week following my period – happy days :-).  Mid cycle, however, following ovulation which for me is usually around day 12 there is about a 65% chance of a migraine often lasting for more than one day.  Then usually another quiet spell until two days before my period begins when there’s around a 75% chance of a migraine.

So what’s going on with our hormones and why are they giving me a sodding headache?!  There are three main menstrual hormones: oestrogen (or estrogen if you’re American), progesterone and testosterone.  Testosterone is often left out of the hormone equation but I know that for me it plays a big role and is probably responsible for my rampant sex drive at certain times of the month!

In the first few days of the cycle, while we’re actually bleeding, all hormones are very low and my chances of a migraine are high.

By the beginning of the second week (ie day 8) both oestrogen and testosterone are rising, while progesterone stays low.  I don’t tend to have any migraines at this time.

By the end of the second week though (days 12-14) progesterone has started to rise and there is a big spike in oestrogen and a smaller spike in testosterone.  Then at ovulation testosterone declines and oestrogen crashes, again setting off my migraines which carry on until around day 17/18 when oestrogen once again starts to rise.

All hormones are at their highest in week three of the menstrual cycle (ie days 14-21) and again I see a lull in my migraines.

Then at the end of week four all hormones nosedive and the decline once again sets my migraines off.

It’s easy to blame oestrogen for everything as it’s the hormone which goes up and down the most spectacularly, but it may not be as simple as that.  When I look at my migraine pattern it fits the ups and down of testosterone every bit as much as it fits the ups and downs of oestrogen, and of course progesterone comes into the equation just before ovulation when my migraines appear and carries on until the end of the cycle just like the other two hormones.  So in fairness it could be any three of the hormones in isolation, or the balance between them which sets my migraines off.

Or it could be something else entirely more complex.  For example, oestrogen drives histamine and histamine has been linked to migraine disorder.  Or it could be progesterone, which adversely affects collagen and may cause more instability in the neck and spine and thereby cause migraine.  Like most things period-related no-one has a clue what’s really going on.

I read differing stores about Menopause and the effect no longer having periods has on migraine disorder, with some women saying it helped enormously and they now hardly ever have migraines and others saying it’s made no difference to their migraine frequency.  As my migraines are so clearly linked to my menstrual cycle there’s one thing for sure – Menopause is going to have some effect, it’s just whether that’s going to be for the better or the worse.  I guess only time will tell.


Weird head symptoms

This is another peri-menopause related post, so feel free to skip it if you’re male, a younger female who doesn’t want to know what the future holds or a jammy older woman who has put menopause hell behind them 😉

I’ve been having a new symptom and it has not been pleasant.  Several months ago, while teaching software to a group of people at my Camera Club, I suddenly felt like I was having a stroke.  I know that sounds dramatic but trust me when I say it was dramatic.  Out of the blue I felt my brain lurch inside my skull and all thoughts ceased.  I couldn’t think, I couldn’t speak and I felt like I was going to pass out.  I have no idea how I kept functioning for the remaining minutes until our coffee break, but I somehow coped then made a hasty retreat to the loo, where I sat on the throne with my head in my hands wondering what the hell was happening.  After five minutes or so I started to shake and feel ridiculously hungry and I realized my blood sugar had tanked, so went and got myself a brew and ate some biscuits.  Later I managed to drive home, albeit feeling crazily spaced out, but for days afterwards I felt really dizzy and disoriented.

Most people would have rung the Doctor but I just figured if it was a stroke I seemed to be recovering and if it wasn’t a stroke they wouldn’t have the foggiest clue what it was, so I couldn’t much see the point.  My almost phobic fear of the medical profession and being labelled bonkers outrode my fear of what was happening to me.

That was back in September and this week it happened again, this time while I was sitting quietly in bed watching the telly.  I genuinely felt like I’d been coshed over the head with a blunt instrument, saw stars and then felt ridiculously woozy for the rest of the night.  For the next four days I kept having weird head rushes, a feeling like my brain was lurching in my skull and felt constantly woozy like I had some kind of concussion.  I also had a low level thumping headache and my brain actually felt sore, a bit like it was bruised.  On day number five, ie this morning, I had some mild head rushes when I first got up but then seemed to brighten up and didn’t start feeling woozy again until around 7pm.  It’s now 8pm and every time I move my eyeballs I feel dizzy – writing this post is making me proper nauseous.

It’s been quite scary if I’m honest, but I did realize that this week I should be ovulating so I’m assuming it’s some kind of hormonal problem.  I Googled “menopause weird head symptoms” and came across dozens of pages, but they were mostly accounts of dizziness rather than the violent brain lurching I’ve experienced, or women who were having anxiety and/or panic attacks which is something I’ve thankfully never suffered from.  From the women’s accounts they were having symptoms which only lasted an hour or two at most,  or symptoms which came and went, not lasting days on end like mine have been this week.  I have had quite bad dizzy spells on and off for a couple of years now but this feels very different – more woozy and with disequilibrium rather than vertigo, plus the head rushes and brutal, sudden feeling like I’ve just been battered on the nonce.

To be honest I’ve no freakin’ clue what’s going on and currently have no intention of finding out.  I’m so sick of Doctors looking at me like I’m nuts, or giving me all sorts of tests which always come back normal then looking at me like I’m nuts, that I’d rather suffer the weird head shit than put myself through the trauma that is medical care.  The symptoms have two choices – they will either go or they won’t and if they don’t and they become unbearable I’ll have to have a rethink.  I’ll probably be offered drugs I can’t take in any event, particularly if they’re migraine related, so I can never much see the point in going to the Doctors.  I’m just hoping it’s my hormones and will settle down soon – keep your fingers crossed for me!


I’m On One

I have days where the second I open my eyes in a morning I know I’m “on one”.  I feel arsy and irritated and could fall out with my own finger ends.  Today is one of those days.  It’s only 6.45am and the world and everyone in it already annoys the shit out of me.  It could be hormones – I’m on day 18 of my cycle and last month my cycle was only 19 days – or I could just be having one of those days.  Whatever the reason I’m wound up like a cog and I haven’t even had breakfast yet.

I have two “friends” on Facebook who feel the need to challenge everything I say.  They never write anything positive but are the first people to write something negative.  I want to tell them to zip it.  I want to be able to have an opinion on the world without constantly being told they don’t agree with me.  It may be childish but I reserve the right to have childish days even though I’ve been a grown-up for some time.

On days like this I hate my neighbours.  I particularly hate the farmer who lets his dog bark at 5am every single morning which means I have to sleep with all my windows closed if I don’t want to be woken at the crack of dawn.  We’ve had a mini heatwave this week, with Tuesday reaching the dizzy heights of 31C, and I had to sleep in a stifling hot room with no fresh air so that I could actually get some kip.  I hate my neighbours who have lawns and spend every second of the weekend mowing them.  It’s like sitting in a huge dentist’s waiting room listening to the sound of the drill.   I also hate all my neighbours who own pressure washers and spend hours and hours and hours washing their cars, driveways and every other stationary object in a 10 mile radius.  I miss the quiet Sundays of my childhood, when nothing happened because it was a “day of rest”.  There are no days of rest anymore and no opportunity to enjoy any kind of quiet time in my garden with a good book.  I want to hammer on all my neighbours’ doors and tell them to SHUT THE FUCK UP!

On days like this I hate every other driver on the roads, especially those who seem to’ve forgotten what indicators are for.   I have murderous thoughts about people who zoom up to roundabouts in the wrong lane, because their time is too precious to queue in the right lane, overtaking everyone sat in the right lane and swerving in front of us all to reach the front of the queue.  It’s fucking RUDE!  I hate motorbikes who think the speed limit doesn’t apply to them.  I hate cyclists who ride abreast on single track country roads, making me crawl along behind them at 10mph, unable to overtake, so they can have a chat to each other.

I hate people who come on my blog and tell me I have this disease or that disease even though they don’t know me from Adam and have no access to my medical notes.  Or who tell me there’s no such disease as M.E. and I just haven’t searched hard enough for what’s actually going on.  If they knew how insulting that was or how much I loathe them they’d step away from the keyboard.  I have a particular loathing for people who come on my blog and moan my low histamine diet isn’t low histamine when they clearly have no fucking idea what they’re talking about.  I actually want to strangle them.

I hate the cat who walks all over my car at night, leaving kitty footprints all over my bonnet when I’ve just spent £9 getting it washed and waxed.  It must have slipped on my last car because it left a foot long scratch all the way down the front which I couldn’t get out so I now have to remember to cover my car up every single time I use it.

I hate so called “friends” who don’t contact you for an entire year because they’re “not well” or “having a hard time” but don’t give a flying fuck that you might be “not well” or “having a hard time”But then expect you to still care about what’s happening with them when actually you couldn’t give a toss because they obviously don’t give a toss about you.

I hate people I barely know, who don’t have my diseases or care for someone with my diseases, reading my blog just to spy on me and then talk about my very private life to other people.  It’s creepy and they need to fuck the hell off.  Come to think of it, I hate people I know really well, who don’t have my diseases, reading my blog just to spy on me.  They need to fuck off too.  On the same theme, I hate people who never post jack shit on Facebook about their lives but read every morsel you write on Facebook about your life and then gossip about it.  Nosey bastards.  Get a life of your own, then you might not be quite so interested in mine.

I could go on…….and on……..but I’m hungry and need some breakfast.  I’m sure my zen will return tomorrow but in the meantime I need to steer clear of the knife drawer 😉



Peri-menopause update

This post isn’t meant to be whiney because I personally feel menopause is a natural event and just something we women have to get through.  That being said, I write about it because it‘s still challenging and I personally trawl the message boards looking for other women having the same symptoms as me so that I know what I’m experiencing is ‘normal’.  Well, as normal as you can get when you live with 4 other diseases (I’m now counting my Endometriosis and Adenomyosis as a disease in its own right, because I suffer from the symptoms every day of my life).

My menstrual cycle starting changing in 2012.  I’ve always been regular as clockwork, sometimes down to the hour, with a 27/28 day cycle but in 2012 this shifted slightly and for the first time in my life I experienced 30 day cycles, and 26 day cycles, and everything in between.  As the years have ticked by my cycles have been consistently longer, or consistently shorter and this month I’ve had my shortest one to date at 19 days.  It’s come as a bit of a shock because my vision of peri-menopause was that my cycles would get longer and longer and then just peter out but the reality is that my cycles have been all over the place, and on the whole shorter than usual not longer.  This apparently happens in the first two phases of perimenopause and only in the latter two stages does the cycle lengthen.

Other than my cycles being a bit nuts I’ve had virtually no other symptoms.  I can count my hot flushes on one hand, though I’m sure these will increase the further along the line I get, and I’ve noticed no worsening of my pre-existing insomnia.  In fact I sometimes think my deep sleep has improved.

I do get night sweats.  Well they’re not sweats as such, I just feel like my legs are on fire.  By 9pm every night it’s like someone’s flicked a switch and my legs are boiling hot and jumpy.  However, I’ve had restless legs my whole life so this isn’t new to me and the hot leg thing has been happening for about a decade now so whether it’s caused by my pre-existing illnesses or part of my hormonal changes I’ll never know.

I’ve luckily never suffered from PMT.  I can have a short fuse, or be a bit weepy, around my period but nothing that has ever interfered with my life and at the moment this hasn’t altered.  I have had two or three massive meltdowns in the past 3 years which are totally out of character for me, but these could be as a result of my own stressful health situation and having to adjust to caring for my parents every bit as much as they could be down to the perimenopause.  There have definitely been times, though, where I’ve been snappier than usual and felt boiling rage for no particular reason which is definitely hormone related.

Bleeding-wise my periods are heavier.  They don’t last any longer, but the flow has increased and is much more clotty than it used to be.  I usually have a break from bleeding after day 3, only for it to return on days 5 or 6 which isn’t usual for me though from what I read is normal for perimenopause.

My menstrual migraines have definitely increased this year which is a bummer.  I can only pray I’m not in for too rocky a road in that direction over the coming years as my hormones surge, crash and finally burn.

Many women complain of increased joint pain and muscle weakness during this time of their lives and I’ve had my fair share of both.  I feel like I’ve turned into a pensioner overnight and do the whole “oomf” thing every time I get out of the chair 😉  I can still crouch down to get something out of a drawer but genuinely struggle to get back up again. Whether this is an EDS thing or a hormone thing, or a combination of both, is impossible to know.  I’m 48 going on 78!

This month my short period has hit me hard in the exhaustion stakes.  I took Bertie out Saturday morning, came back at 11am and had to go back to bed where I slept until 1pm.  This was repeated on Sunday, and both times after I’d woken back up I felt like I’d been hit by a truck and was useless for the rest of the day.  This morning I’ve woken feeling just as weak and knackered but I’ve got too much on to be able to snooze the day away.  In my 22 years of having M.E. I’ve never been able to sleep during the day, even when I’ve only had 1 hours sleep at night, so this daylight kipping is totally new to me and makes me feel like crap.  As I’m typing this I feel like someone’s slipped me a couple of Valium and my brain feels so foggy I simply want to lay my head down and sink into oblivion!

Perimenopause is supposed to last between 1 and 10 years, though most doctors wrongly tell you it will last 2 years and you’ll be done (I wish!).  This is year 4 for me and it feels like very little is changing – my periods are continuing on their up down up down course and not really moving on.  So far the experience isn’t at all like I expected and is better than the horror stories I’ve read online.  Or it could be that I simply cope with the changes in my body better than healthy women as I’m used to feeling rubbish all the time anyway.  Maybe I’m in for a rude awakening in the next couple of years as the whole thing goes belly up but I hope, just for once, I’ll catch a break – I think I deserve that at least!

Weekly roundup

This week has been emotionally and physically hard going.  I’ve had yet another awful menstrual period and have been plagued with migraines 😦  I had a 3 day-er with vomiting leading up to my period, I had a 1 day-er during my period, and another 2 day-er (which is still lingering) as my period is tailing off.  So really the last 10 days have been a right off and I’ve been hormonal, emotional and totally pissed off.

I knew the migraines were coming because I get ravenously hungry, while at the same time feeling sick to the very pit of my stomach.  I can’t face normal food though and always get strange cravings, usually for ice cream (which I never touch any other time), fizzy pop (which again I never drink), crisps and other nutritionally-deficient shite.   I couldn’t eat a piece of nice fruit, or a healthy sani, if you paid me.

In amongst it all I’ve been trying to buy my Mum’s birthday presents – she’ll be 76 next week.   A few days ago the cleaner accidentally broke a table lamp Mum has in her lounge, so she asked if a new lamp could be one of her prezzies.  I knew exactly the kind she wanted but tbh they’re rather old fashioned and the only one I could get was “vintage” (ha!) off Ebay.  I spent two head banging days looking for just the right one, persuaded the seller to end the auction early, the lamp arrived……..and it had been badly damaged in transit and was unusable.  FFS!  So despite the rats gnawing at the inside of my skull I had to drive into town on Thursday to go lamp shopping as I’m running out of time.  I’ve settled on a Tiffany style and had to tell my Mum she wasn’t getting the figurine-style lamp she ideally wanted as no-one makes them anymore, but hopefully she’ll like the alternative – I just hope the damned thing arrives this week as it had to be ordered.

Thankfully I woke on Weds banging-head free and was able to take my Dad through to the city for his CT scan.  However, the day didn’t go to plan.  We got there to find the scanning unit packed to the rafters and boiling hot (it’s in a part of the hospital with no windows or air con) – apparently one of the machines had broken down that morning so they were running 2 hours behind.  Yay.  My Dad is like a caged lion when he’s nervous and can’t sit still.  At one stage he decided to “go for a wander” to the end of the corridor in search of a magazine and for the first time ever I was anxious he’d get lost and not come back – it’s weird to have to keep an eye on your parent like they’re a child.  When our turn eventually came the scan only took 4 minutes from start to finish which was great, but although the Memory Clinic have the results they can’t discuss them with us until they’ve discussed them with my Dad’s GP, who is currently on holiday for a fortnight.

Today, if the dizziness I’ve woken with settles, I’m driving the 45 minutes to see my best mate. I was due to go yesterday but spent the day in bed feeling like my head was imploding instead.  My friend has both ME, POTS and is Coeliac.  As she lives near the city there are luckily places which do gluten-free food and she and her partner ate at one of their regular haunts last week, believing the meal she chose was coeliac friendly.  However, she then spent the next few days exploding from both ends.  Turns out the regular chef hadn’t been in that night and the under-chef didn’t realize that the batter used for the onion rings was made with wheat flour.  So my friend had been glutened.  This is really serious for Coeliacs, as gluten can give them stomach cancer not to mention making them horrendously ill.  Just eating one tiny onion ring will show gluten in her system for several months.

Restaurants these days are required by law to state any allergens in their food, but you have to wonder how informed the staff really are.  Gluten is a hidden ingredient in many products you wouldn’t ever think of, like Soy Sauce, Mayonnaise and even some packets of pre-grated Cheddar cheese.  A take-away owner was jailed for 2 years this week after claiming his food was suitable for someone with a peanut allergy, only to kill a punter.  It was found he used almond flour, not realizing this would be unsuitable for someone with a nut allergy!

To end on a lighter note, and let’s face it my life needs light this week, I’ve been playing about with some photos I did of my friend’s kids using shadow puppets of my own hand I made on the wall.  The girls loved them 🙂




HIT: Info from Dr Joneja

This week I received a lovely comment from Michell at Foodsmatter.com who is going to place a link to my blog on her website.  Having not read the Foods Matter website before I headed on over and found some really useful information on histamine, particularly from Dr Janice Joneja.  Dr Joneja is one of the world’s leading researchers on Histamine Intolerance (HIT) and the diet listed on my blog is based on information from her.  This article on the Foods Matter website is well written and easy to understand and I hope answers some of the questions visitors to my blog have about HIT.

She also does a Q&A list here and I found the section on cheese informative.  Hard cheeses, eg Cheddar, are always excluded from a low histamine diet.  Hard cheese is aged and anything aged is always high in histamine.  However the waters become muddier with young soft cheeses.  Dr Joneja excludes cottage cheese, but allows mascarpone cheese.  Why?  There are two ways to produce soft cheese: curdling without starter cultures (OK) and fermenting with starter cultures (not OK).  Cottage cheese is a fermented milk product made with a starter culture, whereas mascarpone cheese is a curdled milk product made without a starter culture.

Fermented milk products made with starter cultures include:

  • Creme fraiche
  • Cottage Cheese
  • Yoghurt
  • Buttermilk
  • Kefir
  • Feta?
  • Soured cream

Curled milk products made without starter cultures include:

  • Mascarpone cheese
  • Mozarella cheese (however, some mozarellas are made with cultures and should be avoided.  If the ingredients list states “cultured” don’t use).
  • Ricotta cheese
  • Cream cheese – I think!
  • Panir (paneer) – I think!

I’m still confused over some milk products.  Panir (paneer) appears on ‘fermented’ milk lists if you Google it, yet Dr Joneja says it’s a curdled milk product so should be on the ‘allowed’ list. I’ve been using Quark cheese in some of my recipes, but having Googled extensively have found that Quark is usually made with cultures, so it will now be excluded until I can check with the local company I buy from as to how they make theirs – bugger 😦  I do also use a small amount of soured cream in my diet, which I technically shouldn’t and will remove from my ‘allowed’ list, but I don’t think the tiny amount I eat will kill me and I really like it 😉

Curdled cheeses are made with acids, often lemon juice or citric acid.  Obviously lemon and vinegar are excluded from low histamine diets, however, Dr Joneja states “as to vinegar, lemon juice, etc. as a curdling agent: all liquid is removed in the making of the cheese, so any minute residue will not be an issue.”  So that’s good news 🙂

Fish oils are good for heart health and joints but unless the fish is gutted soon after capture fish is not allowed on a low histamine diet.  I was, therefore, interested to read Dr Joneja’s answer to a question on fish oil supplements: “Histamine is poorly soluble in fat, so any histamine that may have been present in the fish from which the oil is derived is unlikely to contain histamine”.  Also good news.

She goes on to clarify other contentious foods.  Nuts are fine – the only exception being pumpkin seeds as pumpkin is a high histamine food.  Legumes (ie peas, beans and lentils) are all allowed as are bananas.  I personally get increased brain fog when I eat bananas, so I avoid them, so it just goes to show how unique and individual each person’s reactions are and why food lists are should only ever be viewed as a guideline and tailored to meet your own needs.

Dr Joneja advocates using anti-histamines for those people in whom restricting diet alone does not significantly control symptoms : “Often, a histamine-restricted diet is not adequate in keeping histamine levels below a person’s limit of tolerance (the level above which symptoms appear) when endogenous histamine (histamine produced within the body) rises significantly. At these times you might try controlling your symptoms of histamine excess with an antihistamine.”  Diet is not the be all and end all and many people also require medication to get their HIT under control.

She also mentions what many of us have already discovered – hormonal changes make our symptoms worse: “hormonal fluctuations contribute quite significantly to histamine sensitivity, as oestrogen and progesterone influence histamine metabolism. Both hormone levels change at ovulation and just prior to the onset of menstruation and many women experience an increase in histamine, and therefore occurrence or worsening of symptoms, at those times.”  Menopause is a prime time for HIT and MCAD to go bonkers and many women have had few or no histamine symptoms until they reach 40+.

Dr Joneja deals with Histamine Intolerance, not Mast Cell Disease which is a totally separate issue – see her explanation on the differences between these two diseases here.  I’m often asked on my blog why diet has not totally eliminated someone’s symptoms and that’s because Mast Cell Disease is much much more than just a histamine problem.  Dr Joneja addresses the question in the following statement:  “a histamine-restricted diet will definitely reduce the amount of histamine in the body by limiting the amount of extrinsic (from outside the body) histamine contributing to the total.  However, because the excess histamine is being released from mast cells within the body (intrinsic histamine), a histamine-restricted diet would be expected to improve a person’s symptoms, but not to eliminate them altogether.  Furthermore, because inflammatory mediators in addition to histamine are released in mast cell degranulation, other symptoms for which histamine is not responsible, will not be affected (by diet).”

The histamine section of the Foods Matter website is well worth a read.

Weekly Roundup

I’ve had a strange week.  Up one minute down the next.  Not sleeping, still.  Rampant heartburn, which seriously gets me down.  Horrible stomach pains, which feels like my entire insides are on fire.  Diahorrea one minute, bunged up the next.  Weird head symptoms I haven’t had in years and a scary lack of energy.  Then there’s the usual joint pain, back pain, neck pain, head pain, nausea, floaters, brain fog, sore throat etc. etc. ad nauseum.

All out of the blue on Wednesday I started my period, which wasn’t due for another 8 days.  So, after a 6 month hiatus, it looks like the peri-menopause is on the move again, with my last 3 cycles being 25 days, 25 days and 20 days.  And now I’m wondering how much of my recent decline in health, insomnia, lack of energy and mood swings are down to that, how much is down to my mast cell disease after becoming allergic to all my antihistamines, and how much is just a general ME shitty patch.

Truth is, it’s impossible to know.  And irrelevant, when I can’t take anything for any of the symptoms whatever their cause (so, please, no advice on trying hormones, black cohosh or anything else because I can guarantee you, I’m allergic).

According to Google, 80% of healthy women going through peri-menopause will suffer increased “fatigue”, so the fact I’m feeling like I’ve been run over by a bus is probably to be expected.  It still sucks though.

I had my annual Doctor’s visit last week and asked her about my fainting episode during my last period.  She said that, although uncommon, it’s not unheard of during peri-menopause and she wasn’t concerned in the slightest.  As mine happened a few hours before bleeding began, she explained that we have a mix of hormones which trigger the bleed and during menopause the surges of these hormones can be extreme and affect all our other bodily systems.  She didn’t even take a blood test, but did say that if it became intrusive I should go back and see her (though it took me 6 weeks to get this appt, so I’d better not be in any kind of rush!).

On a change of subject, I’m still having problems in the area where I had my molar removed last September.  The tooth next to it has had a sore patch on the gum ever since which irritates the life out of me.  I thought it would eventually settle down, but it’s worse if anything and I don’t know what’s going on.  I see the dentist next month and only hope he can shed some light.

I was given a mouth guard to wear on my bottom teeth to help with my TMJ and I think it does, if only I could tolerate it in my mouth.  It makes my teeth ache like a son of a bitch and is just so uncomfortable I can barely stand to wear it.  I went back and had another, less tight, one made but still no joy.  I think a combination of my delicate EDS gums and my pressure urticaria are going to make using any kind of mouth brace impossible *big sigh*.

I dug deep into my energy bank today and went out for lunch with the Olds, as it’s Father’s Day here in the UK.  My reflux has not thanked me one little bit, and I could now cry with the pain, but my Dad enjoyed it so that was the main thing.

As you can probably tell, I’m feeling proper down in the dumps today and just sick and tired of being sick and tired.  It’s relentless.  The bloody weather isn’t helping things either.  It’s now the middle of June, the longest day, and it’s 15c and raining.  Again.  I can’t believe it’s summer and I still have my central heating on, FFS!  I do so much better in warm, sunny weather (about 21C is optimal) but the long range forecast is for another month of the same shite so it’s not looking hopeful.  I love Britain but our weather, particularly here in the North, is pants.

Having said all that, the wild flowers are out and there is nowhere prettier than the UK for the flowers that line our roads and fill our fields, so I’ll leave you with a picture of an Ox-Eye Daisy I took this morning.  Nature always makes me smile 🙂

Weekly roundup

I was going to write this post yesterday, being the end of the week, but I had a migraine.  An all-over-my-noggin-not-just-on-one-side migraine, that made me nauseous and want to chop my head off just to get rid of the pain.  It’s day 17 of my menstrual cycle.  Again.  What is it about day 17 that gives me a migraine?!  If I work out the figures I ovulate around day 12-14, so why I should have a hormone derived head explosion on day 17 is a mystery.  Please menopause, hurry yourself along so I don’t have to deal with this shit every month!

My hip pain has been slightly better this week, yayyy 🙂 .  I’ve been trialling an all terrain mobility scooter (more on this in a future blog post), and received my smart crutches (more on this to come too) so I’ve barely walked a step and it has helped.  I see my physio again tomorrow but to be fair I can’t spend my whole life sitting on my lardy arse, so I’m not sure what the solution is going to be.  Watch this space.

My mast cells remain twitchy and I’m still sleeping badly.  After nearly 3 months the insomnia is now making me grumpy (yes, it is possible for me to be even grumpier than normal – hard to believe I know 😉 ).  I’m having some slight reactions after random foods but so far they’re not out of hand (thank you God!).  I’m trying to be really strict with my diet, but I’m so exhausted, feel so nauseous and it hurts so much to stand to make meals, that I confess it’s a struggle.  Last night I ended up with a bowl of Cornflakes and some tortilla chips dipped in mango chutney for dinner.  It’s all I wanted so just for once I indulged in crap.  It was delicious 😉

The big news of last week in our family is that we’ve finally got my Nan into residential care.  She’s 100 years old, can’t walk unaided, is doubly incontinent, partially deaf, partially sighted, diabetic and going ever so slightly doolally.  She currently lives in sheltered housing with the help of my Dad and paid carers, but the last 2 years have been really hard and we’ve agreed as a family that she needs more care than we can currently provide.

We asked her Social Worker to assess her for residential care, thinking she’d sail through, and were absolutely gobsmacked last Tuesday when she was turned down as she “didn’t fit the criteria”.  The only way she could get any worse is to be dead, so I rang the Social Worker for a little chat.  I pointed out that my Nan, who weighs 20 stones (280lbs), falls so regularly that the ambulance service know her by name.  That she has continence accidents which include smearing excrement all over herself, the bed, the walls and the carpets (we have no idea how she manages this!) which my 75 year old Dad has to clean up, sometimes at midnight.  She thinks all the Carers are stealing from her, and last month accused them of taking her Dentures which we eventually found under the bed (Lord knows how she got them there!).  And to cap it all off, we found she’s been hiding all her medication in a Tic Tac box and not actually taking it, putting her at risk of a diabetic coma.  The Social Worker decided to change her mind and we now have a bed for her in a lovely home not far from my parents.  Result.

Life doesn’t stop just because you’re chronically sick.  You still have to deal with all the milestone events that healthy people deal with, you just have to do it whilst also dealing with your own problems.  It’s stressful.

It’s my second Camera Club competition this week and there is a set theme of flowers.  Here are my 2 entries:

Judging takes place in December.  Wish me luck!