Ketotifen

[kangaSue]

ve made multiple aborted attempts at trying to take Ketotifen.

As a matter of interest, do you get Ketotifen on script locally or do you have to import it for personal use?

 

[Gingergrrl]

As for eating, I'm barely covering survival calories with no safe foods as such, everything makes me vomit to some degree.

I am so sorry to hear of this, KS, and hoping this situation turns around very soon.

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.

I also don't understand how having the VGCC Abs is considered "normal" and it seems either someone has them or they do not. Mine tested at 0.05 and all of my doctors (except the neuromuscular specialist) have never met a patient before with this antibody. That is why I find it so strange when doctors say it is not related to my breathing or muscle weakness b/c if they have never encountered it before in their entire career, how could they know?!

As a matter of interest, do you get Ketotifen on script locally or do you have to import it for personal use?

Not sure if this is useful but in the US you have two options: get it at a compounding pharmacy or import from Canada.

 

[hixxy]

As a matter of interest, do you get Ketotifen on script locally or do you have to import it for personal use?

You can get ketotifen compounded at carina day and night pharmacy. Dr Peter Smith also stocks Zaditen (brand name ketotifen) in his clinic.

 

[hixxy]

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'm curious who this GP is. Do you mind PMing me their name?

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.

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.

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!

I was able to get enough calories. Starchy stuff isn't really tolerated but I can force it down well enough. I even got onto a narrow enough diet that was non-reactive enough in 2014 that I got back to my normal weight 70kg (back down to 60kg now) but then took another turn for the worse. Starch also causes me to ferment horrendously which creates a vicious cycle of worsened sensitivity. My diet was almost devoid of vitamins and minerals for a long time though. 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.

Anyway. Enough of a pity parade.

 

[kangaSue]

You can get ketotifen compounded at carina day and night pharmacy. Dr Peter Smith also stocks Zaditen (brand name ketotifen) in his clinic.

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.

I'm curious who this GP is. Do you mind PMing me their name?

I can't work out how to PM you or it just won't let me. Can you PM me to reply to?

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 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.

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.

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.

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.

 

[hixxy]

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.

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.

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.

All the testing is too hard to get here so it was clinical diagnosis by immunologist/allergist.

 

[Gingergrrl]

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.

I've been using "Zaditor" eye drops (the US version which is OTC) for several months now and they have been more effective for my eye allergies than a prescription eye drop that I've used for 20 years.

Most of the more nutritious foods (ie containing amines, glutamates and salicylates) would trigger off dystonia that would sometimes escalate into dystonic attacks.

@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?

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.

It is the same here and you can get Ketotefin compounded at any strength you want with a prescription. Mine are 2 mg each and I take two pills per day totaling 4 mg per day total. 12 mg would be a very high dose and my MCAS doc said 8 mg is about the maximum he would ever want me to take in a day (but that might just be for me and maybe it varies per patient)?

 

[kangaSue]

@Gingergrrl I think it's the drops I was using that has actually caused the eye problem for me, among other things too maybe. I changed to drops that don't have glycol in it and my eyes feel much better. Weirder but better still, and it doesn't make a lot of sense to me but, since changing eye drops, I haven't vomited once after eating. Strange coincidence!

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 guess both glycol and glycerol are toxic to me seeing as I have had symptom improvement with eliminating contact with either one, be it from internal use or just skin contact.

12 mg would be a very high dose

I gathered that was a high dose, maybe that only applies if I was a rat as per some of the studies into motility.

 

[justy]

Hi Hixxy, don't think I can add much to the convo at the moment re ketotifen. Its likely that you just don't tolerate it. I got increased itching when I started at half a mg at night, but this eventually settled as my immune system learnt to accept it. However it might be the fillers that did this to me as we have NO compounding pharmacy in the UK!!

I find it INCREDIBLY sedating and after 8 months am still only on 3/4 of a mg once a day - it also dries me out terribly.

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?

I wish you luck with this - sorry you are suffering so much x

 

[Gingergrrl]

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.

Am glad you realized that and I do not tolerate preservatives in food but for whatever reason, I have no problems with the eye drops and they make it easier for me to wear contacts (less eye itching and inflammation).

I gathered that was a high dose, maybe that only applies if I was a rat as per some of the studies into motility.

It is a huge dose unless it was a very large rat LOL.

we have NO compounding pharmacy in the UK!!

This is so strange to me and where I live we have compounding pharmacies on practically every corner and they all do great business. We even have them for veterinary meds for pets. I remember you mentioned this before but can't remember why they are banned 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...

Everything has so many names but the first one is like Cromolyn or Gastrochrom, Montelukast is the generic for Singulair, Rupatadine is not available in the US but may be in Australia (I have no idea), and Xolair is the brand name for Omalizumab. Not sure if any of this helps anyone but hoping it might!

Best wishes to @hixxy and keep us posted.

 

[hixxy]

@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?

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. I was probably too malnutritioned to attempt it.

 

[hixxy]

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...

Sodium cromoglycate wasn't very helpful a low doses and I reacted to it at high doses (stomach and esophagus pain).

I had not heard of Rupatadine, it looks really interesting. I'd likely have to get it from an off-shore pharmacy. Did it get discontinued in UK recently? Saw something in google mentioning as much.

I've tried Montelukast and it didn't seem to help, but then again I'm so incredibly symptomatic its hard to know if anything is doing something or making me worse or what.

Xolair is omalizumab, an asthma treating biologic that is shown to help some people with MCAS. Dr Afrin seems to think its a good one to try on people who are experiencing significant food and environmental reactivity.

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.

Is there any chance that you are getting worse because you are being exposed to something like Mould?

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.

 

[Gingergrrl]

There's a lot of different forms of dystonia so it tends to be different with different people.

@hixxy Thank you so much for your detailed explanation of dystonia and it was very helpful.

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.

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 wakes me up with full body pain.

Are your episodes ever triggered by an extreme startle reflex? This is the absolute worst for me (like a knock at the door or my dog barking), etc.

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.

I have not had any of this except for my calves/legs cramping and spasming.

Take a look at a dystonic attack on youtube if you're interested.

Thank you and I plan to do this.

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.

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.

Attempting Fredd's methylation protocol caused my dystonia and MCAS to worsen a lot.

I also had a horrible experience attempting methylation in 2014 (not Fredd's protocol but something different) and this was pre-MCAS. It was an over-methylation reaction with tachy in the 150's and severe agitation.

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.

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.

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.

We had toxic mold and had to move and I did nebulized glutathione and a mild mold binder (oats and apple pectin) and it was an important part of my detox. But I did not tolerate any of the stronger binders. Am happy to share more via PM if it could be of any help.

 

[hixxy]

@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.

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.

https://en.wikipedia.org/wiki/Myoclonus

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 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.

I got mostly arrhythmias and some tachycardia and chest pain. The arrhythmias are the scary ones.

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.

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?

 

[Gingergrrl]

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.

To call it a "Startle" is like calling lighting a match an atomic bomb but I just don't know a better word for it! My dog barks every time someone comes through the door, uses the vacuum, etc. She is almost 11 yrs old and I don't think this will change. Other things startle me, too, but she is the worst b/c her bark is so high pitched and jarring.

It is purely the act of being startled and if someone came in and gave me really bad news, I would not have this reaction. It's purely physiological or autonomic vs. any cognition to it b/c it is instant. It feels like a shot of Epi to the heart and my body starts shaking and muscles spasming with severe pain. It can take hours to recover and once took me a full 48 hours. It is not a seizure but it is becoming incredibly annoying.

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.

It has never happened when I am trying to fall asleep but it recently keeps waking me up from sleep. My very first symptom in 2013 was very high tachycardia waking me from sleep (in the 160's and 170's) and now it is this severe muscle cramping and pain waking me from sleep.

Some of your symptoms do seem like dystonia.

Thanks and I truly was not sure. I plan to ask my Neuro who I see in 1-2 wks.

I got mostly arrhythmias and some tachycardia and chest pain. The arrhythmias are the scary ones.

I've never had an arrhythmia where my heart has left sinus rhythm but I get tachycardia and chest pain.

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.

I actually do not compound all of my meds, only two of them- the Ketotefin and Atarax. The Ketotefin is b/c this is the only option in the US and the Atarax to have a pure version with no bad fillers or dyes. But for all of my other meds, I have been able to find at least one generic that is dye free by researching the "inactive ingredients" on a website called "Daily Med". So all of them are covered by my insurance except for the two compounded ones which I just pay for privately b/c they are worth it for me.

Did you have abnormal immunogobulin tests before getting access to IVIG?

I was slightly low in IgG subclass three on two tests but in my case, I am trying IVIG as an autoimmune treatment vs. for immune deficiency. Ironically the dose that I have tolerated thus far is actually the immune deficiency dose but I still hope to slowly increase it until I reach the AI dose. My doctors all support it but whether my insurance company will remains to be seen. I was approved for six infusions (at the lower dose) so when we ask to increase it, I am expecting them to deny me and have to appeal.

My next IVIG in 1-2 weeks is my first attempt without any steroids which is risky allergically but I had such bad side effects from the steroids that it is worth it for me to find out if I tolerate the IVIG without them. And if I do, this gives me more options to increase the dose in the future. It is all trial and error but in my case, I am hoping to lower some autoimmune antibodies and see if this makes a difference. It has vastly improved my MCAS so I tolerate normal food and smells again but it has not (yet) improved my other symptoms.

 

[hixxy]

Chances of getting IVIG or even SCIG in Australia outside of its on-label indications is less then non-existent.

 

[Gingergrrl]

Chances of getting IVIG or even SCIG in Australia outside of its on-label indications is less then non-existent.

I heard that from @kangaSue as well and am so sorry. It's very challenging here, too, and it took me five months to get it approved by my insurance but it can be done. It is being used in autoimmune diseases now here (off label) and since I had a positive ANA titer, MCAS, and several auto-antibodies, one of which is very rare, I was able to get my main doctor, MCAS doc, and a new Neuro on board. All of this led to me getting a total of one infusion of IVIG which led to round two of battle with my insurance which led to six infusions. The system is designed here to make the patient give up but if you have the stamina for lots of nonsense, it can be done.

Do any of your doctors think that IVIG could help you? Can they ever get something approved "off label" or is this unheard of? Is IVIG being used in autoimmune diseases outside of the US? I am curious b/c I know of a patient who got it in Germany and another in Belgium just b/c their doctor ordered it. I wish it was not so different in each country for the same medication! So maddening

 

[Gingergrrl]

@hixxy I wanted to tell you that I just Googled Dystonia attack and watched some videos on You Tube and they are very different than what I experience.

I also Googled the other term you mentioned, Sympathetic Storm and it seems to correlate with having a fever, higher BP and sweating (none of which I ever have) so I think it also does not pertain to me.

But then I Googled SPS (stiff person syndrome) on You Tube and many of the videos in which the people seem to be in a frozen position with their muscles shaking do match with my recent experiences which is kind of scary! The definitive test seems to be GAD65 which I am positive for so I am very curious if there is a specific EMG that can test for it (since the EMG that I had for LEMS was negative).

I wish the Neuro could trigger the startle response or do something to see it occur or it could very easily be missed. But since treatment seems to be IVIG, even if I did have a slight case of this, am hoping it will help. And I may not have it at all, am just grasping at straws to tie it all together.

 

[hixxy]

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 ...

 

[Gingergrrl]

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 ...

@hixxy Thank you so much for clarifying that and in that case, it is possible that I have dystonia without the extreme of having an attack. I have had severe neck pain where my neck is literally frozen and cannot turn to the side and more recently, after these startle responses, my muscles freeze up (a single muscle or my whole body) and feel like concrete and start shaking (but nothing like the videos on You Tube). Sometimes I am visibly shaking and other times the shaking feels internal where my husband, etc, cannot see it but if they touch the muscle (on arm or leg, etc) they can feel it.