kangaSue
Senior Member
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- 1,853
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- Brisbane, Australia
As a matter of interest, do you get Ketotifen on script locally or do you have to import it for personal use?ve made multiple aborted attempts at trying to take Ketotifen.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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As a matter of interest, do you get Ketotifen on script locally or do you have to import it for personal use?ve made multiple aborted attempts at trying to take Ketotifen.
As for eating, I'm barely covering survival calories with no safe foods as such, everything makes me vomit to some degree.
Voltage gated calcium channel antibody was found which turns up in some chronic GI dysfunctions but in the "normal" range, if such a thing exists. Gingergrrl had a positive finding of that antibody.
As a matter of interest, do you get Ketotifen on script locally or do you have to import it for personal use?
As a matter of interest, do you get Ketotifen on script locally or do you have to import it for personal use?
I've got a really good G.P. who has been willing to let me experiment with a greater variety of things than most people would have tried where I can show evidence that they have some efficacy for any of the GI dysfunctions that I have going on so yes, I've given the meds route a fair bashing. Like food and a lot of supplements though, not tolerating meds is a big problem too.
I've had a diagnosis of intestinal ischemia among other things and thought I had nailed a solution back in 2012 when I found that nitrates (nicorandil) along with domperidone alleviated a lot of symptoms and I could manage everything orally without vomiting but things went downhill again a couple of years later which coincided with noticing that I wasn't sweating anymore (which turned out to be Restricted Autonomic Neuropathy) so was looking at it being autoimmune (Autoimmune Autonomic Ganglionopathy or Autoimmune Gastrointestinal Dysmotilty). I haven't had a hit on a positive antibody finding although that doesn't necessarily rule those things out according to the medical literature.
As for eating, I'm barely covering survival calories with no safe foods as such, everything makes me vomit to some degree. I tried gluten free but that made things worse. Also had a go at TPN which was as bad as, or even worse than tube feeds which the boffins don't reckon is possible but I have read accounts of dozens of people who don't tolerate lipids running all the time with TPN.
Most people with TPN lipid issues say getting lipids only once or twice a week works best but my doctors refuse to give TPN to me without lipids, they reckon it's not good that way as it's not a complete diet then but, with no other option, no one seems to be too fussed that the diet I'm on has only got one inevitable end, pushing up daisies!
What strength do you get your ketotifen at? There are a few motility studies around that suggest ketotifen can restore gastric motility where inflammation is the problem but the strength was up around 12 mg from memory.You can get ketotifen compounded at carina day and night pharmacy. Dr Peter Smith also stocks Zaditen (brand name ketotifen) in his clinic.
I can't work out how to PM you or it just won't let me. Can you PM me to reply to?I'm curious who this GP is. Do you mind PMing me their name?
I had an Autonomic Function Test panel done of QSART, TST, Head Up TTT, Valsalva Manouvre and Heart Rate Variability to Deep Breathing Test at the RBH to conclude I had Restricted Autonomic Neuropathy. Mestinon improved my sweat response but the gut didn't tolerate it for long.The not sweating sounds like me from about 2008 - 2013. I remember people commenting when I was still working in 2008 because I'd go out for a walk around the walking track (I worked at an army base) with full business atire on in midday Australian summer heat and there wouldn't be a drop of sweat on me. I sweat a little bit now but its still not normal. I've never really had it investigated.
I guess I'm lucky, I've only got GI dysfunction. Glutamates are a major problem for me too though. I thought if nothing else, I could live off bone broth but turns out that's high glutamate and the broth was one of the worst offending foods I have ever had.Most of the more nutritious foods (ie containing amines, glutamates and salicylates) would trigger off dystonia that would sometimes escalate into dystonic attacks. The skin all inside my mouth and gums would peel off as well and when my sinus inflammation gets bad enough I get autoimmune damage to my ear cartilage.
What strength do you get your ketotifen at? There are a few motility studies around that suggest ketotifen can restore gastric motility where inflammation is the problem but the strength was up around 12 mg from memory.
It's quite a coincidence but my optometrist told me yesterday to get some Zaditen drops for my eyes as they are affected by some type of allergy. It only comes as 0.250 mg strength so wouldn't be strong enough for any motility effect I wouldn't think.
What testing did you get to conclude you had MCAD? I've bought up MCAS with doctors before but it's always been swept aside without any satisfactory answers given.
It's quite a coincidence but my optometrist told me yesterday to get some Zaditen drops for my eyes as they are affected by some type of allergy.
Most of the more nutritious foods (ie containing amines, glutamates and salicylates) would trigger off dystonia that would sometimes escalate into dystonic attacks.
As its compounded you can get it in whatever dose you want (as long as you have a prescription). I'm not using ketotifen at the moment, but I had 1mg capsules. There's no way you would start on 12mg straight up. You'd have to start at 1mg and titrate anyway.
I gathered that was a high dose, maybe that only applies if I was a rat as per some of the studies into motility.12 mg would be a very high dose
Zaditor and Zaditen look to be identical in formulation. I chose not to use it because it contains glycerol and I am super sensitive to that in that it causes a lot of gut pain and upset. The multi use bottle also has a preservative that some sources say to avoid, benzalkonium chloride, so I'm staying away from eye drops with that in it too.
I gathered that was a high dose, maybe that only applies if I was a rat as per some of the studies into motility.
we have NO compounding pharmacy in the UK!!
Have you tried sodium cromylgate? or maybe Rupatidine (an H1 blocker that also stabilises mast cells?) what about montelukast? is that the same as xolair? Ugh there are so many drugs and so many names I get confused by them all. But basically the Dr needs to have you try different meds if one doesn't agree with you...
@hixxy, can you describe the dystonia that you get from glutamate? I had a bad reaction to eating food with MSG two nights ago and am curious the if muscle part of what i experienced would be considered dystonia?
Have you tried sodium cromylgate? or maybe Rupatidine (an H1 blocker that also stabilises mast cells?) what about montelukast? is that the same as xolair? Ugh there are so many drugs and so many names I get confused by them all. But basically the Dr needs to have you try different meds if one doesn't agree with you...
Is there any chance that you are getting worse because you are being exposed to something like Mould?
There's a lot of different forms of dystonia so it tends to be different with different people.
I get dragging of my left leg, muscle cramping and involuntary muscle clenching, hand "posturing" and curling in at the wrists, tightness at back of neck (cervical dystonia), repeated shrugging of shoulders, nodding head and jaw movements. Some of these movements an be quite painful as they aren't gentle at all.
When I'm deteriorating towards a dystonic attack, my back starts arching painfully and legs tense up, I can end up with back and buttocks lifted off the ground with my body tensed like a board, then I also get during a attack repeated muscle spasms where I am wacking my head repeatedly against whatever surface I'm laying on and limbs cramping and spasming.
Take a look at a dystonic attack on youtube if you're interested.
You don't have to get all that to have dystonia, dystonic attack is like the worst of the worst. It can also be called a sympathetic storm. My heart gets affected scarily at same time.
Attempting Fredd's methylation protocol caused my dystonia and MCAS to worsen a lot.
It's also so hard to know if the fillers are causing problems or not and so expensive to get drugs without fillers and in the case of needing to order something off shore you have no choice but to take what's available.
Maybe, I'm not sure. I've considered getting the house checked for mould, but have no idea what I'd to remediation wise as its not my home and my parents are getting very impatient with making changes for me and my severe MCS. There's no overt mould problem though, but I guess that is usually the case anyway.
@hixxy What has been happening to me lately is usually triggered by a startle reflex or wakes me up from sleep. I've never had any dragging of my legs but I have had severe muscle cramping with involuntary muscle clenching with one episode in which my hands were curled and I could not open them and I felt paralyzed (but was not actually paralyzed in reality). I always have tightness/pain on right side of my neck and shoulders from a prior injury but I've never had shrugging of shoulders, head nodding or jaw movements. I often get severe pain in calves that wakes me up and sometimes it wake me up with full body pain.
I will also Google sympathetic storm and am very curious about this. When it happens to you, what cardiac symptoms do you get? I had such a bad episode of angina several weeks ago (exertion followed by an extreme startle response) that I was worried that I had triggered this thing called "Takotsubo Syndrome" but it thankfully turned out that I had not.
Getting my meds made without fillers or dyes was the best thing I ever did. Do you have compounding pharmacies in Australia? It is expensive but absolutely worth it. My MCAS is in a remission period again right now which I think is from getting IVIG but the meds are a critical piece of the puzzle.
Is it just a startle or do you feel sort of like a jolt go through your body? I've had this in the past and it's called myoclonus jerk/seizures.
For me its related to too many reactions and their effect on the autonomic nervous system. They only happen when trying to fall asleep or sleep.
Some of your symptoms do seem like dystonia.
I got mostly arrhythmias and some tachycardia and chest pain. The arrhythmias are the scary ones.
Its too expensive for me to do all meds without fillers especially if I was to end up on a lot of medications. There's no assistance with compounding expenses at all in Australia, none of it is covered by any kind of subsidy or insurance.
Did you have abnormal immunogobulin tests before getting access to IVIG?
Chances of getting IVIG or even SCIG in Australia outside of its on-label indications is less then non-existent.
Most people with dystonia don't have dystonic attacks. That's at the far extreme end of the spectrum. Many dystonias only affect a single body part. For instance, writers cramp is a type of dystonia. Cervical dystonia only affects the neck. And so on ...