Tag Archives: histamine intolerance

Weekly roundup

It’s Sunday again.  I swear there’s a time thief living in my house!

Monday was a BIG day.  Three old codgers from my Camera Club were going on a day out to Beamish living museum and had asked me along.  I’d never been but it’s a 90 minute drive away and we would be there until 4pm so although I really wanted to go I was worried it would all be too much.  However, I reasoned if I woke up that morning feeling crap I could cancel and if I went but conked I could always go back to the car and lie down, so I decided to risk it.  Beamish covers a large area and I had no clue how I’d cope with getting around but discovered there are free trams and a wheelchair friendly bus, plus they’d made the ground wheelchair/scooter friendly for the most part so actually it was fine.  An interesting day was had by all though I admit I felt proper rough on the journey home and my hips still haven’t forgiven me.

It took me a few days to get over the trip, during which time I had a migraine so bad it felt like someone was in my brain with a pick axe, but on Thursday I felt sufficiently recovered to meet my bezzie for a picnic lunch and to go on a dragonfly hunt in a local nature reserve.  The weather was glorious, if a little too hot, and I sat mesmerized for a couple of hours watching the dragonflies going about their busy little business, which appeared to involve lots of mating then sitting on grass stems to recover 😉  Nature is simply wonderful.

My right thumb, which I subluxed 10 weeks ago and which has been strapped up along with my wrist ever since, seems to finally be on the mend though the nerves are obviously still damaged as it’s still numb to the touch.  There were times I thought it was never going to get better but I forget how long ligaments take to heal and I just needed to be patient.  It’s a relief to finally have the tape off though cos it itched me like a son-of-a-bitch.

Y’know I said in last week’s roundup that I’d entered the Edinburgh International photography Salon and had all 8 of my images rejected so was feeling a bit deflated?  Well, things turned around this week when I discovered I’d won my first exhibition medals at the Midlands International Salon, including a Gold from the Royal Photographic Society with an image which Edinburgh had rejected!  It just shows how arbitrary art is.  That the RPS, arguably one of the most prestigious photography organizations in the world, gave me a gold and other judges didn’t even give me a pass mark for the same photo is bonkers!  You have to do what makes you happy and if other people like it fine and if they don’t that’s also fine.  Receiving a gold medal has really given me a boost and four days on I’m still buzzing 🙂

I’ve been working on two images this week.  One involved being dressed as a Nun which didn’t work in any way, but I’m happy enough with this one.  I’m calling it ‘Raven Tower’ even though it’s not a Raven in the picture but a Rook – I won’t tell anyone if you don’t 😉  My right hand was still strapped for this picture hence the gloves which I thought were an ingenious cover up!

I’m enjoying dressing up for my photos a little bit too much and often prance round the house in my costumes just for the hell of it 😉  Thinking about it the other day I concluded that my real life is so limited and my personality is so constrained by my illnesses that the selfies in my photos give me the opportunity to be anyone I like in any situation I like.  I’m currently working on a picture where I’m an Arabian princess riding a white stallion in the desert and I can almost taste the freedom of that when I’m creating the image.  We all need some escapism when illness leave us largely bed or housebound, particularly if that continues for many years, and I feel very lucky to have found a way to break free of my shackles.  The only time I left the house when making the picture above was to visit a nearby castle to phograph the turret – the moon, sky, bird and me were all taken in my bedroom!

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Weekly roundup

The heatwave continues and while I am loving it it’s making both me and the dog feel pretty wiped.  A combination of the unusually high temperatures and high histamine levels which make me pee up to 4 times a night are also interrupting my sleep big time and I would kill for a decent kip.

I’m really not sure what my currently high histamine is all about.  I’m not eating anything I wouldn’t usually eat and am not stressed in any way – in fact, I’m super chilled and enjoying my summer.  My backside is covered in hives though, I’m having a pain flare, am exhausted and going back to sleep only three hours after I’ve gotten up and I’m peeing like a race horse which are my signs for histamine that is rampant.  The only culprits I can think of are my injuries from last month, a shed load of insect bites and my schizophrenic hormones.

I had some soul destroying news on Tuesday.  After seeing the ophthalmologist at my local hospital who agreed my floaters are so bad something needs to be done I’ve been waiting for a referral to a specialist at a larger hospital.  The ophthalmologist rang me on Thurs, however, to tell me that her referral had been rejected as “there is nothing wrong with my vision”!  I can barely see out of my right eye and my left gets worse by the day, to the point where I can no longer read for pleasure and editing my photos is so difficult it’s reduced me to tears on more than one occasion.   She suggested I find a vitreous Consultant and then ask my GP to refer me, which is fine but how am I supposed to know which Consultant to see?!  Over the years I have received so little help from the health care system it makes me want to top myself and put myself out of my misery.

I had a horrendously painful migraine on Weds night and at 2am caved and took some junior Ibuprofen, to which I had a reaction.  FFS.  However, it only lasted about 10 minutes and then settled to the point where I fell asleep, waking the next morning with zero pain.  God how I long to take drugs and not be petrified about anaphylaxis :-/

Despite my awful night I’d arranged to meet a friend for lunch on Thursday so dragged my sick and exhausted arse out of bed and made the drive up to the Lake, getting there dizzy, nauseous and spaced out.  I’m glad I made the effort though because I actually had a laugh and a brilliant natter and felt mentally, if not physically, better for it.

The Farmer rang me again this week and I admit I was quite curt with him.  For one I didn’t give him my number he stole it from a Camera Club rota and for two I’ve given him zero encouragement or reason to think I am romantically interested in him – get the fucking message and stop bothering me.

I entered an international photography salon this week and all 8 of my images were rejected, even photos that had won me trophies and Honourable Mentions in other salons and competitions.  I’ve never had all my images rejected before and I admit it led to a crisis of confidence with me spending a couple of days thinking I was a terrible photographer.  I already feel like a fraud who is scraping by on flukes and this just re-enforced my belief.  One of my fav online fine art photographers talks about this in a vlog and I relate to every word – women seem to be particularly prone to self doubt.  In the end I had to give myself a stern talking to and reason that even if no-one else in the world likes my pictures I like them and that’s all that counts.

Taking advantage of the hot weather and trying (in vain) to distract myself from my pain levels, I got a little padding pool out in the garden and played around in the water with my camera.  I didn’t quite know what I was aiming for but was chuffed with this image I’m calling Ophelia.

I’m liking myself with red hair so much I’ve sent for an auburn wig.  I have Irish ancestry and three of my cousins have gorgeous red hair, so maybe I was always meant to be ginger and not boring mousey brown 😀

Weekly roundup

The UK is enjoying a heat-wave and we may be on trend to have the hottest summer on record.  It’s been over 30C here in the North, which is virtually unheard of, and we’re having the most prolonged hot spell in over 40 years.   I luuurve nice weather but this is too hot even for me and the temperature in my bedroom hasn’t dropped below 26C all week despite a huge fan going full pelt, consequently there hasn’t been a huge amount of sleep happening and I’m now feeling pretty wiped.

Monday, one of my photography buddies and I took advantage of the sunshine and went down to the river with our cameras.  To be fair we didn’t get any useable shots but had a nice time anyway and ate our picnic lunch in a wild flower meadow.  In the afternoon I had to take Bertie to the vets.  He’s had a herniated spinal disc since he was about 3½ and now and again the pain gets really bad, so he’s been put on Gabapentin.  He’s had it before and it It usually helps but this time despite both that and daily paracetomol the pain still isn’t under control so I’m not sure what the next step is going to be 😦

Tuesday my Dad had his long-awaited appointment with the spinal team and has thankfully been referred for surgery.  He’s always been super fit but 18 months ago started with back stiffness and leg pain and is now unable to walk around his home without a stick.  His MRI showed spinal stenosis which can happen as we age, but his seems to have progressed at an alarming rate of knots.  I just hope he doesn’t have to wait too long for treatment.

Wednesday I received a call from one of the men at my Camera Club.  Can you remember we were given arranged seating at our annual dinner the other month and I was placed opposite a single, middle aged farmer who bored the arse off me all night?  Well it was him, telling me I had beautiful eyes and inviting me up to his farm.  I go to my camera club for help with my photography – if I wanted a boyfriend I’d join a dating app.  I had to let him down as gently as possible but it’s now going to be bloody awkward when we next meet up.  I could sodding well kill the woman who organized the dinner and placed me on a table with no less than 3 single, middle aged men I’d tried all fucking year to avoid.

Thursday I had lunch at a lovely local cafe with another camera club buddy.  It’s so fabulous to be able to eat outdoors, although all the goddamn flies are annoying and despite wearing insect repellant I have several, large, angry, I-want-to-scratch-my-skin-raw bites.

Aunt Flo this month has been a bitch.  I’ve had period, endo, bowel and back pain for 10 days now but no proper period.  I had brown gunk for 3 days then 1 day of light bleeding.  Nothing for 2 days followed by anther day of brown gunk.  The pain has been ridiculous though and has included shooting pains down my legs which have kept me awake half the night for most of the week not to mention the fact that I can’t sleep on my favoured left side because it sets off wicked bowel/ovarian pain, and to add insult to injury I’ve had no less than four migraines.  FFS I’m so over it.

With the pain, heat and lack of sleep I’m flagging this weekend so have just had a quiet time not able to do much of anything.  I’d had a couple of photos in mind though which I’ve worked on in the evenings, while simultaneously eating my body weight in Haagen Dazs and binge watching old episodes of the Kardashians to avoid the torture of eleven men in shorts chasing a ball of air around a field, otherwise known as the football World Cup 😉

 

 

 

Weekly roundup

All my wisdom teeth came through in my early twenties and have never caused me any bother, but recently one of the bottom ones has been painful and when I woke on Tuesday morning with a really sore throat and swollen glands on the same side I thought I’d better get it checked by the dentist.  Thankfully there was no abscess or infection but the gum was severely inflamed and needed to be packed with an anti-septic and anti-inflamatory dressing.  It tasted vile and was so minty hot my mouth was on fire for the rest of the night but it helped and that’s the main thing.  As you all know, though, I’m flaring at the mo and I did have a small reaction driving home in the car, which I now know was nothing to do with the drugs in the dressing and more likely due to simple exhaustion and the stress of the procedure.

I continued to feel unwell on Wednesday and was very MEish.  The Dentist said the sore throat was nothing to do with my tooth so I probably had an unconnected throat infection from which I’m still suffering, and for the first time in ages I was on the verge of collapse by lunchtime so had to go back to bed.  I felt both sick and ravenously hungry at the same time, which is usually the warning sign I’m getting a migraine, and sure enough by 8pm my noggin was thumping and the pain kept me awake half the night.

Thursday I’d arranged to meet my best mate for lunch but when I got up at 6am my head was still banging and I wasn’t well enough to go, so I risked taking some junior ibuprofen suspension which calmed the pain down and allowed me to drive.  I’m glad I managed to go despite feeling like a limp lettuce because I really enjoyed the goss and it was nice to be out of the house.

That night I was kept awake half the night with tummy ache which felt suspiciously like period pain.  I was only on day 16 of my cycle, though, so dismissed the notion and thought instead that maybe it was just collicky pain to which I’m prone.  Nope, it actually was my period – at least I think it’s my period.  I have all the symptoms: backache, period pain, nausea, migraine, exhaustion………… but no bleeding, just thick brown gunk.  Apparently this can happen when there aren’t enough hormones to cause thickening of the womb lining, which I’m hoping is a good sign that my peri-menopause is moving on towards actual menopause, but it’s cruely ironic to have looked forward to my bleeding stopping only to still have every period related symptom known to man. FFS!  I’m also monumentally unimpressed at having a ‘period’ only 2½ weeks since the last one.  Pleeeeaaaase God make it stop.

Friday I was back at the Dentist.  I’d had the appt booked for ages as it was just for a routine check-up but my gum was still inflamed so he put another dressed on and we’ll see if that finally does the trick.  This time I had no reaction at all, which is how I know my first reaction was nothing to do with the dressing.  Friday evening I started with another migraine (I always have migraines during my period) so was, for the third night running, awake half the night in pain. This week has been hard work.

As if all that wasn’t enough to be dealing with, I woke up Weds morning with a painful index finger on my right hand – I have no fucking clue why.  I already have my right thumb and wrist strapped up and now I’ve had to buddy tape my finger, which means using the laptop is tortuous.  My one distraction from all my woes is my photography, however using my editing tablet is aggravating the pain so I know I should be taking a break but I honestly think I’d go nuts, so I’m carrying on regardless and probably making the situation worse.  Here is an owl we saw at the flying display I went to a couple of weeks ago, which is still one of the best days of my life:

The good news is that my Mum had her latest test results back and her anaemia has improved to within the normal range.  She also had a bone density scan, having been diagnosed with osteoporosis 23 years ago and never having had a scan since, which shows her bones are much better than they used to be and she is now classed as having osteopenia rather than osteoporosis.  She was on bisphosphonate tablets for two decades then switched to a 3 monthly injection, but is now deemed to no longer need them and just has to take calcium & vitamin D supplements.  Maybe if she’d been monitored and had regular scans she might have been able to come off them years ago :-/  I was told off by a GP who used to follow my blog when I said that Doctors don’t monitor their patients properly but from my experience they absolutely do not.  It was my Mum who requested the scan – if it had been left up to her GP she wouldn’t have had one as long as she lived and carried on taking drugs she no longer needed.

 

Flares

Having been diagnosed with both Histamine Intolerance (HIT) and Mast Cell Activation Syndrome (MCAS) it’s often hard to know when I have a symptom flare who the culprit is.  Acute reactions are easy – if I take a drug and 20 minutes later get a whoosh in my head, my heart starts hammering and my face goes beetroot red my mast cells are having a hissy fit, and if the same thing happens 5 minutes after I’ve eaten I know it’s my HIT at play, but the waters become muddier when I feel insidiously and chronically unwell as is the case at the moment.

I’ve talked about this before, but for the benefit of people new to my blog these are the signs that my histamine levels are high:

  • Feeling exhausted but wired and unable to relax.
  • Insomnia, either difficulty getting off to sleep or waking during the night – usually around 2 or 3am.
  • Increased urination, especially having to get up during the night to pee.
  • Sluggish bowel.  I usually poop every morning after breakfast but this becomes every other day and at random times, even during the  night.
  • Flushing and feeling hot after eating.
  • Ligaments which injure super easily and refuse to heal.
  • Back pain which is muscular in nature.
  • Muscle spasms, particularly in the gut.
  • Nausea without vomiting.
  • Itchy skin and scalp.
  • Sore throat.
  • Oesophageal spasms which cause retching.
  • Sneezing, particularly on waking.
  • Increased or decreased energy.
  • Increased or decreased appetite.
  • And my old friend hives.

I am currently having one such flare of symptoms and looking back over the past couple of months I suppose I can see why.

  • My cleaner has been off so I’ve been doing way more in the house than normal.
  • My dog walker was also off for 2 weeks so I’ve had to take Bertie out more.
  • I split my lip open and had stitches.  There’s the shock of the event, the pain, the physical trauma and the fact my poorly immune system had to rally into action.
  • I subluxed my thumb joint which has led to ligament trauma, inflammation and ongoing pain.
  • I have a throat infection.
  • I had to have an emergency dental visit yesterday due to acute inflammation of one of my wisdom teeth.
  • And of course all the usual peri-menopause and endometriosis related gubbins.

It’s no surprise I’m not feeling great.

It all starts a vicious cycle though.  I am way too exhausted to cook, and feel nauseous much of the time, so end up eating a less than low histamine and less than ideal diet.  Add to this raging hormones and ridiculous food cravings and I know my ingested histamine is high.

Wounds and trauma stimulate mast cells, which release inflammatory and other mediators, which stimulate mast cells, which release inflammatory and other mediators, which stimulate mast cells…………  In a healthy person this cycle would happen once and then stop, whereas in MCAS patients the hand-brake appears to be faulty and we just keep rolling down the hill.

Having to do more physical activity than I know is good for me has made me really tired, but due to my high histamine levels I have insomnia and am getting up in the night to pee often several times.  This makes me even more exhausted and I gradually get more and more run down and open to opportunistic viruses and infections.

It’s incredibly hard to break the cycle.  I know I should probably have some enforced bed rest, but when your histamine levels are high and you feel really wired it’s soooo hard to just lie there doing nothing!  But it does usually help, so now my cleaner is (hopefully) back and my dog walker has returned from her hols I will have to force myself to chill, use my super powers to resist my hormone-related food cravings and give my immune system a chance to switch off.

Weekly roundup

I have been so naughty this week.  I’ve got the most intense cravings going on, so I caved and have chomped my way through a whole tube of sour cream ‘n onion Pringles, a family bag of Starburst, a family bag of Wine Gums, a frozen mushroom pizza (my first bought tomato-based pizza in 5 years) and a small tub of Salted Caramel Haazen Dazs ice cream.  I’m sure none of that has done my histamine bucket any favours and I’ve probably gained 5lbs but I swear my hormones thanked me and I loved every second of my binge 😉  Fuck it, you only live once and it’s not like the sky fell in or anything.

Tuesday night was the last evening of our beginner’s photography class so I hauled my exhausted arse along to show support even though I wasn’t lecturing.

Wednesday I decided to spend half an hour in a wildflower meadow taking selfies for a photo I had in my head.  Stupid here forgot to put her insect repellent on though and I’ve spent the days since covered in huge blistery, itchy bites.  The photo turned out OK though so that’s the main thing 😀

After having 6 weeks off to nurse her Father who has now passed away, my cleaner didn’t come again this week as her daughter had a hospital appointment.  I know they’re all legitimate excuses but when is she going to realize that the reason I have help in the house is that I‘m sick?!  If she worked on the tills in Tesco she wouldn’t have been given 6 weeks off, dying Dad or no dying Dad.  When my Nan passed away my Mum had one day off her 40 hour a week job for the funeral and that was that, even though she’d been taking turns to sleep on my Nan’s couch for 3 months beforehand to nurse her.  We all have stuff going on in our lives but the world doesn’t stop turning and we still have to work – she’s only here 3 hours a week for heaven’s sake.  Maybe that sounds harsh, but including holidays she’s had nearly 7 months off in the last 18 during which time I’ve lived in a dirty house and slept in a dirty bed and the reason my hand is currently killing me is because I tried to change the bed sheets myself in her absence.

Speaking of which, the only solution I could come up with to help my CMC joint was to tape my hand.  I found some YouTube videos showing the best way to go about it which I modified to cover all the areas which are sore, but I have to admit it’s not helped so I think I’m going to have to see the Doctor *sigh*.

Friday I had the plumber here servicing the gas boiler and fire and fitting a thermostatic valve to one of my radiators.  I also had the builder here quoting to re-grout my patio.  My house needs some expensive jobs doing, like a new front door, but as I’d love to move to a one story house in the not too distant future I’m hugely reluctant to spend yet more money on this one.  I’ve been looking for a new home for a year now though and had no luck so I could still be here in 5 years time and it’s difficult to know what to do.

Today is Father’s Day (why is there no Daughter’s Day?!) so I’m going out to lunch with the folks even though I feel rubbish and am absolutely wiped.  I know I should be grateful that I’m well enough to go out after spending years bedridden, but it’s not like I’m going to enjoy it – my Dad is loopy loo and my Mum will start off whiny and snappy (there is always something wrong with the food) then get increasingly giggly and stupid the more wine she drinks – so to be fair I’d rather be stopping in bed cuddled up to Bert and working on my photos.  Neither of my brothers has ever taken my Dad out on Father’s Day even though he’s their biological Father and not mine.  Why does this stuff constantly fall on my shoulders just because I’m single?

As you can probably tell I’m hormonal, crabby and not feeling well so I’ll shut up now, go and get some breakfast and try to find my happy head.  Onwards and upwards!

Mast Cell Triggers

MCAS is a very individual disease.  We will all react to different things and to differing degrees  but it’s still comforting to read about other people’s experience of mast cell disease and to know we’re not alone.

My reactions take on several forms:

  • Cutaneous: flushing, itching, hives, blisters, rashes.
  • Brain: migraines, brain fog, seizures, memory problems, altered consciousness, speech problems.
  • Gut: nausea, retching, oesophageal spasms, increased urination, constipation, diarrhea, gut pain and cramping.
  • Ocular-nasal: sneezing, stuffiness, runny nose, nasal and eye itching, eye redness & watering, eye pain and soreness, light sensitivity.
  • Cardio-vascular: palpitations, chest pain, breathing problems, blood pressure rises and falls, vertigo, dysautonomia.
  • Systemic: fatigue, weakness, widespread non-specific pain, feeling fluey, muscle spasms, pins & needles, fight/flight, pacing, anxiety, feelings of doom, insomnia.

I can either suffer from the symptoms of one these categories on their own (eg. birch pollen season gives me hayfever but little else), or in combination with other categories, for example drug reactions give me just about every mast cell symptom known to man. My reactions have also changed significantly over my life-time.  As a child I had flushing, bowel problems and fatigue but nothing so out of the ordinary that it wasn’t just put down to being normal!  As a teenager, once my hormones had kicked in, I added chronic headaches, aura migraines, skin itching and one drug reaction to the mix.  By the time I was in my mid-thirties I also had widespread pain, increased urination, oesophageal spasms, severe M.E., severe insomnia, chronic nausea and several drug reactions.  And then when I hit my early forties I became almost totally drug allergic, developed food reactions, Histamine Intolerance, hives, hayfever, my hEDS went bonkers and I peed so much I honestly thought my kidneys would pack up!

Here is a list of the things which currently cause my mast cells to behave badly:-

1. Emotions

Emotions are one of my biggest triggers, but the reaction is mild.  Being excited brings on a flush, makes my skin itchy and sometimes brings me out in a rash.  Being unhappy,   particularly if I’ve been crying, does the same but also makes me feel fluey and wiped out afterwards.  Arguments are to be avoided at all costs as they always involve not only flushing but also rashes and/or hives and make me hugely brain fogged and exhausted.  This is the rash which appeared on my tummy after someone was bitchy to me on a Schnauzer Forum!

Chronic stress, however, is a different kettle of fish.  Eventually I will break out in hives, start reacting to foods, develop insomnia, have to get up in the night to pee (sometimes several times), my already poor memory goes to hell on a hand-cart and eventually I will end up bedridden, fluey and exhausted.  This is why I need a quiet, structured life with as few surprises as possible.

2. Drugs

I am one of the most drug allergic people I know.  From herbs to supplements, painkillers to steroids, anti-histamines to anti-depressants, sedatives to anti-emetics my mast cells reject them all.  I have an ocular-gyric crisis to anti-nausea drugs like Stematil, and Grade III anaphylaxis to most of the others (there is currently no universal grading system for anaphylactic reactions but one of the most common is the Ring & Messmer scale which you can see on the Mast Attack site).  Here is my facial flushing after a drug reaction:

Photo of mast cell induced flushing

Unfortunately the reaction doesn’t stop when the drug is out of my system.  Mast cell activation can perpetuate mast cell activation and for me the whole thing goes round and round in circles until something eventually breaks the cycle.  My longest reaction has been 3 weeks until my heart was so poorly from the constant palpitations I was blue lighted to hospital with a suspected heart attack.

My drug reactions can also make me ill for months afterwards and so weak I’m bedridden.  Needless to say I don’t take any drugs, herbs or supplements unless I am so desperate that being potentially bedridden for the next six months is worth it!

3. Hormones

Entering peri-menopause is what triggered my MCAS to go from mild to life-threateningly severe.  I’m convinced I was born with MCAS just like I was born with hEDS, but apart from my increasing drug reactions and almost daily flushing it didn’t become really serious until I was 44 and my hormones started to fluctuate.  I started reacting to foods, which I’d never done before, developed hay fever, hives, started peeing during the night and my migraines went off the charts.  I also stopped tolerating any medication, even things I’d taken for years without a problem.

I’m unfortunately still having regular periods and in the week leading up to The Curse I can have hives, itchy skin, rashes, nausea, widespread muscle pain, am clumsy and my chronic fatigue ratches up a notch or ten.

4. Seasons, plants & animals

I had no idea until I had skin prick allergy testing that I was allergic to Birch pollen and as a result of that also have problems with apples which make my throat and lips tingly and itchy.

I also get an itchy skin rash from fir trees which I discovered when I moved into a house that had several of them in the garden.  Needless to say I chopped them all down and now have an artificial Xmas tree!

I had a strong reaction to dogs on skin prick testing but I’ve never noticed any problems being around them – no itching, eye problems, sneezing or anything else, which is brilliant considering I have Bertie!  My brother, OTOH, only has to be in the same room as a dog for two minutes and is sneezing his head off and his eyes are streaming.  He’s also allergic to horses but not to cats!

5. Insect bites

I did a self portrait photo in a lovely wildflower meadow last week and stupidly forgot to put on insect repellant beforehand.  I didn’t realize until I got home and started to itch like a son-of-a-bitch that I’d been eaten alive by tiddly little flying critters and four days on am still having to use steroid cream for the itching, swelling and redness.  I have an exaggerated reaction to insect bites, from mosquitoes to gnats, and have ended up in A&E before now just from being nipped by a midgy.  The itching is out of all proportion to the size of the bite wound and drives me absolutely bonkers – here is one of last week’s little nibbles on my thigh:6. Hot water

I know, it sounds nuts to be allergic to hot water but sadly I am!  I luuurve my baths as they’re one of the few things which help my pain levels, but they do make me itch, itch, itch and I’m zonked afterwards.

I am not, however, allergic to heat per se.  I love warm (but not hot!) sunny weather and usually feel my best when the weather is nice!

7. Viruses, Vaccinations and Trauma

Splitting my lip open and having it stitched the other week made me feel rotten for several days as did having a molar removed a couple of years ago.  Wounds and trauma, which necessitate an immune response, naturally plays havoc with my mast cells though usually any reaction is short lived and just involves increased brain fog, nausea, muscle weakness, fatigue and generally feeling a bit fluey and not well.

Viruses and bugs are much more serious and can leave me bedridden for weeks or even months.  The weird part is, though, that just before I come down with a virus I feel absolutely brilliant.  For 24-48 hours 80% of my symptoms disappear and I feel fabulous……….and then the virus hits and I am floored.   I can have a variety of reactions to viruses, from simply feeling a bit MEish, fluey and unwell to full on grade III anaphylaxis the after-effects of which can last for months.

Vaccinations, however, are the worst of all.  The last jab I had was for travel abroad and it was that which led to me becoming severely affected with M.E. and being bedridden for a decade.  One of the immunizations was against meningitis and 5 days later I got meningitis!  I also had a measles vaccine as a child and still went on to get measles, though admittedly not as severely as if I’d not had the vaccination.  My immune system just doesn’t respond in a normal way to jabs and I will never, ever have another vaccination as long as I live.

8. High histamine foods

While it’s unclear whether my food reactions are as a sole result of my Histamine Intolerance, or whether mast cell activation is also at play, I started reacting to high histamine foods when I was 44 having never had a food reaction before in my life.  Within about 20 minutes of eating I’d develop palpitations, my blood pressure would plummet, I’d flush, have oesophageal spasms, retch, pee and pass out – not necessarily in that order.  It was terrifying and I became almost phobic to eat anything as I had no idea at the time what was happening.  It took nearly a year to discover I had HIT and needed to follow a low histamine diet, which thank God has kept my food reactions at bay.  However, during times of mast cell activation my food histamine bucket over-flows much more quickly and I can have more food reactions that I would when my mast cells are calmer.  It’s a constant balancing act, especially while I’m menopausal and my mast cells are all over the shop.

9. Alcohol

Although some alcoholic drinks are high in histamine so are a no-no due to my HIT, some are not but I react to them anyway in the same way I react to high histamine foods and some drugs.

10. Doing too much

The busier I am, and in particular the less rest I get, the more reactive I become.  I’ve no idea why this should be and it kind’ve sneaks up on me, so I have to be mindful when I’m busy that I can’t keep that level of activity up forever without consequences.  Not only does lack of routine, doing too much and not enough rest make my ME worse it also makes my MCAS worse and after only a few weeks I’ll have a hive outbreak, stop sleeping, stop pooping and start peeing like a racehorse.  In fact  I’m doing just that at the moment, probably as a result of my recent mouth injury, rampant hormones, eating crap (I actually had a frozen pizza last week for the first time in 5 years, just because I wanted one god dammit!) and trying to socialize more than I should due to my current feelings of isolation.  My histamine is definitely way up and I really should take more notice of that, rest more and stop eating rubbish.

 

That’s the bad news, but there is good news too, albeit on a small scale.  Since starting a low histamine diet my migraines are less than they were and my almost daily headaches have disappeared completely.   My horrendous, intractable, untreatable insomnia has improved dramatically after not sleeping for over twenty years and I rarely now have to get up in the night for a wee.  I used to react really badly to smells and fumes, like bleach and hairspray, but for some reason these no longer bother me and despite my exaggerated reaction to insect bites I’ve been stung by a wasp and had no reaction whatsoever.  So it’s not always the case that MCAS will continue to progress and there is at least scope for small improvements.

I’ve no idea what will happen once I’m through the other side Menopause.  If my hormones are the cause of much of my mast cell madness I’m hopeful of at least some improvement once they’ve finally jogged on which, as you all know, can’t come soon enough.  Time will tell.