Keep your eye on it!

I haven’t felt very well the past few days.  Correction, I’ve felt crappier than usual the past few days 😉 .  The Birch pollen season has begun, so I’ve been sneezing my head off and my eyes are dry and sore, although this year I know to keep all my windows shut, run the air purifier in my bedroom, always wear my glasses when outside and put some Hay Max organic balm around the inside of my nostrils before I venture outside which seems to work quite well.

But I’ve also been really muzzy headed, have had a sore throat and just felt generally drained and ‘not right’.  My chest is also worryingly tight (although I bought a peak flow metre and my readings are excellent at 550) and I’m coughing my head off.  It could be related to the pollen, but at the same time I’ve had reflux pain so it could also be a bad bout of GERD.  I’m already on the maximum dose of Tagamet (H2 blocker), plus extra Gaviscon Advance especially before bed, but it’s obviously not keeping the acid at bay.  I tolerate the H2 so well that I’m extremely reluctant to try a PPI instead, although if it gets much worse I might have to.  So I’m wondering if the sore throat is from the reflux and coughing, or whether I do have some kind of mild throat infection particularly as I don’t feel ‘well’ (although my temperature is normal).  My step-brother gets bad hayfever though, and he doesn’t feel well at the moment either, so it could also be the pollen!

That’s the problem when you have M.E. – every day you feel like you have the Plague, so how can you tell when you actually do have a virus?  Or whether your increased symptoms are down to something else entirely, like hayfever or an MCAD flare?  Or whether you’re just having a crap M.E. patch?  Answers on a postcard please.

I gave up going to see my GP about anything about 10 years ago.  She would either hand me a prescription that I couldn’t take, or refer me for tests which always came back normal.  All the visits ever did was make me feel like a hypochondriac which wasn’t good for my psyche.  But there are some symptoms I really worry about, like my lower stomach/pelvic pain which has been particularly bad in recent months.  I am 110% convinced the pain is down to endometriosis, but what if it’s something more sinister?  I have regular smear tests but that wouldn’t pick up ovarian cysts or internal tumours.  About 5 years ago I actually think I had a burst ovarian cyst (I’ve never had pain like that in my life) but I still didn’t call an ambulance – by morning it had settled down a bit and I’m still here so whatever it was it didn’t kill me!  There’s a saying in my family to “just keep your eye on it” – with everything that’s wrong with me it’s a wonder I can see straight 😉 .

The only time I’ve been to hospital was after I’d had a mast cell reaction to having chiropracty for my back.  Within 5 minutes of the treatment I knew I was going to be really ill.  And I was, including having tachycardia for 3 entire weeks and horrendous vomiting/retching.  After 21 days of continuous symptoms (including losing 9lbs puking) and absolutely zero sleep, I had chest pain so bad it felt like I was being skewered by a bread knife.  So at 3am one night I called 111 (the non-emergency number) and was told I had to call an ambulance.  I said I didn’t want to, I’d be fine, but the Doctor on the other end disagreed and called one anyway!  I ended up being blue-lighted to hospital, only for my ECG to be considered ‘normal’ (I knew I was having an allergic reaction and that there would be nothing wrong with my heart) and discharged 5 hours later in the snow, in my pyjamas and with no way of making the 30 mile journey home (a taxi would have cost me £80!).  It’s not going to happen again in a hurry.

I might try some Claritin (H1 blocker) alongside my Tagamet to see if that will settle any hayfever symptoms down (although it gives me insomnia!) but other than that I’ll just put up with the tight chest.  It does get me down though, as breathing is exhausting when it feels like there’s an elephant sitting on your breastbone!

I am, however, going to finish on a high note.  I’ve had the biopsy results for the lump on my little dog’s leg and it’s just a benign cyst and nothing at all to worry about, yayyy 🙂 .  And my Mum is definitely brighter now we’ve altered her medication – like her GP says, it’s a balance between quality of life and quantity of life.  If I had a choice, I’d rather be well and die at 60 than feel like this every day and live til I’m 100!

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3 thoughts on “Keep your eye on it!

  1. Marlene A. Smith

    I am extremely glad to have found your blog. My name is Marley and I was diagnosed with Systemic Mastocytosis(Im going to call it SM) in July of 2012. I live in the U.S. 90 miles north of Atlanta, Georgia.You have many issues like me. Take one issue at a time. May God grant you some peace.

    Take the Claritin( H1 blocker once a day) with the Tagamet(H2 blocker). (a H1 and a H2 work better together, rather than just a H1 alone against allergic triggers). Tagamet(the H2) has a lot of drug interactions. I take Claritin 10mg in the am and Zyrtec 10mg( a H1 blocker) in the evening. I also take Pepcid 20mg (a H2 blocker) twice a day.Pepcid has less drug interactions than Tagamet. Claritin 10mg once a day is non-sedating. There is also Allegra 180mg which is once a day and non-sedating. Zyrtec 10mg can be taken twice a day in mast cell disease but one has to think of drowsiness in the am. That is why I take a Claritin in the am and a Zyrtec in the pm.

    SM patients like me can have 2 daily surges of Serotonin. Also, my histamine level peaks at night and causes insomnia. I take Clonazepam 2mg and Ambien 10mg for sleep. I have sleep apnea and use a CPAP machine at night. Sleep apnea is common in mast cell disorders.
    When I have a “fit” I take a dose of Benadryl 50mg to 100mg(the most powerful anti-histamine). My ” fit ” usually occurs around 5 pm. I am guessing that its that surge of Serotonin. I take Doxepin 10mg in the evening to combat the Histamine peak in the middle of the night. I use an Oral Balance Dry mouth spray for the dry mouth from all the anti-histamines when needed. They make a toothpaste, oral rinse and gum for dry mouth also.
    .
    If my stomach acid breaks through I increase my Pepcid to a 40mg dose temporarily.
    Gastroenterologists do not routinely stain for mast cells during procedures such as an Endoscopy and Colonoscopy. I was misdiagnosed for 13 years with Crohn’s disease.
    The last 7 of those years I was on Remicaide IV every 8 weeks. I am off Remicaide and Asacol and have no GI flare-ups. I was tested in 4 areas of the GI tract for mast cells recently. The level for Mastocytic Enterocolitis is arbitrary and in Augusta, GA at the Medical College of GA, the Pathologists choose 100 as diagnostic. I was at 50 without being flared up and had no signs of Crohns disease. I have a PPI prescription for Nexium 40mg every day but I do not take it. It can ruin your bones and mess with your magnesium level. Too many mast cells and the substances they cause to be released already destroy bones.
    When Tagamet and Gaviscon no longer work, instead of a PPI, there is a prescription medication called Carafate(sucralfate) that comes as a liquid. Carafate coats the throat down to the stomach. It is taken 4 times a day away from food and other medications. Carafate has worked for me when nothing else would. The next closest over the counter medication to Carafate Suspension would be Mylanta II liquid,which is also taken 4 times a day away from meals and medications for its stomach coating action.PPIs take a while to work, maybe 3 days to start.

    Every time you mess with the mast cells in your connective tissue that are in your skin, GI tract and lungs, we types with too many mast cells ( MCAD, MS) get a whopper of a reaction. That’s probably what happened at the chiropractor with you. I have read that chest pain and tightness can be due to mast cells releasing their mediators. I had a daily cough for 7 years. I saw a Pulmonologist and received tests with normal values. Six months after I was off the Remicaide the cough stopped. Cough is one of the side effects of Remicaide that I was not aware of until recently. I have a mild version of the cough that remains.
    I have a low blood pressure (100/70) and a high pulse rate(100). Too many mast cells release too much histamine. Too much histamine causes blood vessels to relax. When blood vessels relax, your blood pressure drops. You can have resting tachycardia as the heart tries to pump more blood, and at a faster rate, due to the low BP.

    The Birch Pollen is putting your immune system into overdrive! Block that trigger with a H1 and a H2 drug everyday. Add a dose of Benadryl if you can handle the drowsiness and your Doctors allow it. I have a Hematologist/Oncologist and a Allergist/Immunologist who have both dealt with mast cell disorders. Besides Ehlers-Danlos Syndrome, have you been diagnosed with POTS(Postural Orthostatic Tachycardia)? Marley

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    1. bertieandme Post author

      Hi Marlene

      Thanks for all the info and I’m glad you’re liking the blog 🙂 You’re obviously new to my saga and won’t know that I’m almost totally drug allergic, so cant’ take most of the drugs you’re on sadly (I’m allergic to all the drugs you take for sleeping). I didn’t do at all well on Zantac which is how I ended up on Tagamet (which at least I can tolerate). That’s why I’m so reluctant to take a PPI -it’s very doubtful I’ll be able to tolerate it. The fewer drugs I take the less chance of having a massive mast cell reaction, which again is why I only take Claritin or any other H1 when it’s absolutely necessary and not all the time.

      I’ve been ill for 20 years so all this isn’t new to me sadly :-/ I’m due at the POTS clinic in June (90 miles away).

      Here in the UK we don’t have access to the teams of specialists you see in the States unfortunately. Our health care system is vastly different and, as I live in a rural area, there are no specialists for hundreds of miles (I had to travel 300 miles to get my MCAD diagnosed) which makes ongoing care virtually impossible especially as I’m on my own and struggle to travel due to my health. My health care isn’t how I’d like it to be, but I just have to make the best of the crappy circumstances!

      Jak x

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      1. Marley

        I am sorry that you can’t take medications. I was lucky to find One Oncologist in the whole state of Georgia that knew what Mastocytosis was. I kind of assembled my own team of Drs at the same Hospital in Augusta, GA. because mast cells are found everywhere, the skin, the GI tract and the eyes, nose, ears and lungs.

        I know what you mean about travel. I live out in the country and it is 150 miles to the mast cell Oncologist, Neurologist, Rheumatologist, Gastroenterology and Dermatologist. For these appts, I travel the day before with my spouse and stay at a Hampton Inn. The Psychiatry MD and my Allergist are 60 miles away. All of this takes time for referrals with the military health care system: Tri-Care Prime. I am going to Boston, MA in July for a one time visit to the US expert on Mastocytosis, Dr. Maria Castells, MD, PhD Allergy/Immunology, at Harvard, to see what is up with my Immune System and Pachymeningeal brain MRI enhancement. The trip won’t be cheap as I am disabled and can not travel alone. I might get 15 minutes of her time and no answers and feel anger.This mast cell cancer is so complicated that I need a Geneticist as well. There is no cure for Systemic Mastocytosis and many of us remain housebound due to our chronic daily fatigue. I live on land that was an old cow pasture, 6 acres. I get anaphylaxis to fire ant bites which makes me go unconscious unless I inject myself with an Epipen. My main trigger is the bite of a fire ant(or a bee or wasp sting). After 4 years of allergy shots to fire ants, I got bit in May of 2012. I went to my Allergist and he said that I most likely had a mast cell disorder. The Allergist said that I should have been protected with 4 years of allergy shots against fire ants. But I went unconscious and my husband found me, eyes wide open at the sun, laying on concrete. He injected an Epipen and I woke up. So my insurance said I had to see a local Oncology group. They had never seen a case of Mastocytosis. The incidence of SM is 4 people in 1 million. It is a rare disorder and is called a NORD.The new MD grad from Vanderbilt went to an online pricey service of medical information called “UptoDate.com” the MD looks up SM and it tells the Dr. how to diagnose it. They did a bone marrow biopsy and found that it was crowded with 10 % malignant mast cells, that push down the making of RBCs, WBCs and Platelets. A bone marrow transplant for me with SM has a 30% death rate and is considered experimental and is not covered by insurance. The thought that there is no cure for Systemic Mastocytosis can drive you mad!

        Next, I was not comfortable to be told to be on my way and take a Claritin, Pepcid or PPI when needed but no prescriptions were given out because they are all available over the counter. I told my Allergist who recommended either Dr. Castells in Boston, MA at Harvard or a Dr. that he knew of in Augusta, GA.

        The Pathologists from Augusta read 12 slides from the local Oncology group and found a bilobed Neutrophil(abnormal, could be MDS; that the local Oncology didn’t see). However there was no sample to test for MDS. ( a second cancer cell-type). I got a second bone marrow biopsy in Nov.2012 and was found to have a dysfunction in platelet formation.

        A spinal tap was traumatic with 3 sticks btw L4 and L5 where I had told the DR I had had surgery. The lab result had no initial pressure, had RBCs in the CSF fluid and possible other junk because the tap was traumatic. I wanted another spinal tap done with fluoroscopy and was denied by Neurology.Grrrrrr…..Marley

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