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Day In A Picture + Status Report
Feb. 8th, 2012 10:46 pmToday was mostly like this:
Visual description: A gorgeous cat is lying spread out on the floor, apparently napping, about two inches away from a fancy cat bed. Caption: Some days you don't make it far from the bed.
In other words, I didn't get much done.
On the plus side I am relatively cheerful!
Which brings me to the more general status report ... in the latter part of last year I was prescribed Singulair to damp down the not-technically-an-allergy symptoms caused by my assumed mast cell activation syndrome[1]. Symptoms it treated included itchy sore eyes, itchy runny stuffed up nose, a bit of the fatigue, and that nasty "itching all over and hypersensitive to touch" feeling which makes me want to crawl out of my skin. The Singulair was very effective at treating all of these things and I had not really connected that I had started feeling depressed quite soon after I started taking it. I didn't expect an allergy medication to have neuropsychiatric side effects .... then I saw somebody mention online that it had made them depressed and I found the FDA warnings from 2009 that it does indeed cause depression in some people.
I figured that since none of these not-quite-an-allergy symptoms were actually dangerous that I would stop the Singulair for a while and see what happened. What happened is that I got un-depressed basically overnight! I am still a bit nervous about whether this is a placebo effect[2] and the depression will be back in a week, but I am fairly sure it really was the drug. Being un-depressed is nice, but now I am all snotty and itchy and hypersensitive to touch again, so it's back to the "find another allergy drug" path ... I'm seeing the allergy guy on the 29th of February.
Current primary diagnoses are: Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH), and suspected Mast Cell Activation Syndrome. This puts me squarely in the hypothesised "Elephant" camp of those who have a hereditary connective tissue disorder (like EDS), a dysautonomia (like POTS or NMH) and a mast cell related disorder. It's very hard to tell on the internet but it seems likely that a statistically abnormal number of patients have all three of these rare disorders and we suspect they must interact somehow. Even if they are not biologically related it gives me a handy support pool of people who share all my symptoms which is something very supportive and reassuring to any chronically ill person!
So that's where I am just now. Questions welcome :)
Cheers,
r
[1] Mast cell activation syndrome is basically that my mast cells are firing off and causing "allergy" symptoms ... but not because of what the immunologists call an allergic reaction. They've done those skin prick tests and also blood tests and I am not "allergic" to anything in the way immunologists define it ... but something is making my mast cells dump histamines and all the other chemicals that cause "allergy" symptoms!
[2] What would be the correct term for stopping a drug because you think that you have side effects, and having that side effect go away .... even though you later find out the drug wasn't connected with that symptom at all?? I don't think "placebo" is actually correct.
Visual description: A gorgeous cat is lying spread out on the floor, apparently napping, about two inches away from a fancy cat bed. Caption: Some days you don't make it far from the bed.
In other words, I didn't get much done.
On the plus side I am relatively cheerful!
Status Report
Which brings me to the more general status report ... in the latter part of last year I was prescribed Singulair to damp down the not-technically-an-allergy symptoms caused by my assumed mast cell activation syndrome[1]. Symptoms it treated included itchy sore eyes, itchy runny stuffed up nose, a bit of the fatigue, and that nasty "itching all over and hypersensitive to touch" feeling which makes me want to crawl out of my skin. The Singulair was very effective at treating all of these things and I had not really connected that I had started feeling depressed quite soon after I started taking it. I didn't expect an allergy medication to have neuropsychiatric side effects .... then I saw somebody mention online that it had made them depressed and I found the FDA warnings from 2009 that it does indeed cause depression in some people.
I figured that since none of these not-quite-an-allergy symptoms were actually dangerous that I would stop the Singulair for a while and see what happened. What happened is that I got un-depressed basically overnight! I am still a bit nervous about whether this is a placebo effect[2] and the depression will be back in a week, but I am fairly sure it really was the drug. Being un-depressed is nice, but now I am all snotty and itchy and hypersensitive to touch again, so it's back to the "find another allergy drug" path ... I'm seeing the allergy guy on the 29th of February.
Current primary diagnoses are: Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH), and suspected Mast Cell Activation Syndrome. This puts me squarely in the hypothesised "Elephant" camp of those who have a hereditary connective tissue disorder (like EDS), a dysautonomia (like POTS or NMH) and a mast cell related disorder. It's very hard to tell on the internet but it seems likely that a statistically abnormal number of patients have all three of these rare disorders and we suspect they must interact somehow. Even if they are not biologically related it gives me a handy support pool of people who share all my symptoms which is something very supportive and reassuring to any chronically ill person!
So that's where I am just now. Questions welcome :)
Cheers,
r
[1] Mast cell activation syndrome is basically that my mast cells are firing off and causing "allergy" symptoms ... but not because of what the immunologists call an allergic reaction. They've done those skin prick tests and also blood tests and I am not "allergic" to anything in the way immunologists define it ... but something is making my mast cells dump histamines and all the other chemicals that cause "allergy" symptoms!
[2] What would be the correct term for stopping a drug because you think that you have side effects, and having that side effect go away .... even though you later find out the drug wasn't connected with that symptom at all?? I don't think "placebo" is actually correct.
