Day In A Picture + Status Report

[jeshyr]

Today 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!

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.

Comments

[acelightning]

[2] coincidence :-)

[jeshyr]

LOL.

I don't care (much) if it's a coincidence as long as it STAYS gone. I'm just a bit worried that it'll creep back y'know??

[acelightning]

i'm sure your doctors have more suggestions. there are drugs in the same family as Singulair that might not have quite the same side effects. or there are plenty of anti-allergic-reaction drugs!

the very first anti-psychotic medications were derived from the older (sedating) antihistamines. someone was treating a mental patient who had severe allergies, and discovered that the allergy medicine caused a reduction in his schizophrenic symptoms. and in the modern era, we're discovering that all sorts of drugs that were originally used to treat one kind of problem have surprising effects on other conditions that seem completely unrelated.

[jeshyr]

I had totally forgotten that about anti-psychotics and allergy meds, if I even knew it - good reminder, thanks!!

I didn't realise there were other LTRA drugs around actually but Wikipedia mentions at least two others so that's good to know. I'm taking H1 and H2 inhibitors already. The usual series of drugs I've seen suggested for mast cell activation syndromes seems to be:
- H1 and H2 inhibitors (zyrtec & zantac are first-line)
- Singulair
- Cromolyn Sodium
- Ketotifen
These are all oral forms BTW. Unfortunately Cromolyn Sodium isn't available here in oral form, and Ketotifen isn't commonly used either although my allergy guy mentioned he could get it. He hadn't even *heard* of using Cromolyn orally though :(

I'm seeing him on the 29th of February which seems to be an auspicious day, so fingers crossed...

[acelightning]

ketotifen is only available over-the-counter here as a form of eye drops, and i use it in ridiculous quantities. apparently it is available for internal use, but only by prescription. i don't know if cromolyn even works orally - i think it has to be applied directly to the affected organ, which is why people inhale it in powdered form for respiratory allergies.

[jeshyr]

I have Ketotifen eye drops too - aren't they brilliant!! But there is an oral ketotifen also available in the USA on prescription. It's not routinely available in Australia but can be obtained for Speshul Snowflakes. (and I still keep spelling it "ketitofen" and having to correct myself Every Single Time... I hate it when mis-readings become engrained!)

Cromolyn is indeed only useful when it touches stuff, but there is also an oral cromolyn which is really good for gastro-type symptoms caused by allergy too! I used to have the inhaled stuff for my asthma as a kid, those little capsules you breathed in ... it was very effective. But yeah, not available in Australia either and I don't know about Speshul Snowflake status.

By "Speshul Snowflake" I mean the government medical system will fund importing it, BTW. I can get drugs from overseas legally via private prescription but that means paying full price plus postage which is usually a whole heap.

r

[acelightning]

ever since i had cataract surgery, my eyes have been abnormally sensitive to allergens and irritants - even a purely mechanical irritant like a puff of wind or a tiny droplet of water hitting my cornea the wrong way can trigger a reaction. the affected eye burns, itches, feels as if it's got a piece of grit in it, waters uncontrollably, and swells almost shut. alternating applications of ketotifen and pheniramine "anti-allergy" eye drops, at far shorter intervals that the packages recommend, can and the reaction in a few hours instead of a day or two.

i don't supposed oral cromolyn is any good for food sensitivities. what i've got aren't technically "allergies", because i don't get any of the anaphylactic symptoms; instead, i get nausea, vomiting, and diarrhea within minutes of eating one of the enormous number of foods i'm "allergic" to. from what i've read, this isn't related to a histamine reaction at all; i don't think they actually know how food sensitivities work.

and, of course, being in the US, i'd have to pay whatever the drug company demands for any medication, no matter where it's shipped from :-(

[(Anonymous)]

Oh, and that anon comment is from Maizie, by the way!!

[jeshyr]

Thanks Maizie!!

I'm told that a placebo effect caused by something ending is still called a placebo effect, so that works :)

Anyway, fingers crossed for staying un-depressed.

[dadi]

Uh oh. I was remembering a similar episode and looked up my tags on LJ.. and right enough, here it is: http://dadi.livejournal.com/tag/singulair ... I was feeling truly terrible.. and lo and behold, one day without the pills, and things went back to normal again. So no, not a coincidence at all.

[jeshyr]

Wow ... I knew I wasn't the only one but it's odd to see it happened to you too!! I'm glad you realised quicker than me what was causing the depression...

[synecdochic]

[2] a weird side effect that might not be in the literature but that you experienced anyway ;)

Seriously, I think the word you're looking for is 'psychosomatic', but drug mechanisms are poorly understood and just because a symptom's not in the literature doesn't mean it's psychosomatic! (I mean, you are talking to the person who goes batshit insane on hormonal birth control.)

[jeshyr]

Nah, I meant it backwards to that .... depression is a documented side-effect from Singulair but that doesn't necessarily mean my depression was caused by it.

I'm somewhat nervous that my depression was only coincidentally time-related to the Singulair and hence its current remission is a placebo effect caused by me believing that stopping the singular would stop the depression.

Did that even make sense??

Anyway I know all these symptoms - documented or not - are totally physically real! I wish they weren't real ... but yeah.

Anyway feeling generally positive and cheerful and not wanting to bite anybody's head off so that's good!

[(Anonymous)]

That's great that you have (reasonably) firm diagnosis, and a corresponding support group.

I hate the skin crawl, and couldn't imagine having it chronically, ditto nose itch. And then the rest! But I'd take them over depression any day, myself.

Best of luck with a way forward
xx

PS elmsleyrose@blogspot.com.au doesn't work as an openid. Anonymous is fine - long as you see my message :-)

[jeshyr]

I see it. Just for reference I think that the correct openID would be:

elmsleyrose.blogspot.com

with dot, not @ sign.

Diagnosis and support groups are SO amazingly important aren't they!!!!

[jesse_the_k]

Some researchers use the word "nocebo" in the [2] case, but it makes my skin crawl.

Huh, that's an interesting trinity of diseases, which I wish I could glom on to so I'd have something known (if at least by smart folks on the Internet) but I don't think I'm all the way there.

Love the cat!

[jeshyr]

It feels so unbelievably amazing to have this group to glom onto, I totally understand. I actually didn't initially think it totally fitted me and was researching from interest only but it fit more the more I read ...


I'm told that a placebo effect caused by something ending is still called a placebo effect, so that works :) Still hope it's not a placebo and that the depression will stay gone - placebos tend to wear off over time. Touch wood, etc.


Cats are always good!