Mast Cell Disorders Forum

Sarah4

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Ketotifen
05/14/11 at 12:52:52

Recently Dr. Castells was kind enough to consult with me by phone. I told her that I had been trying to increase the intensity of my walking a bit (trying to improve POTS with exercise) , but on the days I increased exercise, I could pretty much count on having an anaphylactic episode in the evening. She suggested I add Ketotifen 1 mg twice a day to my current meds (Zyrtec, Zantac, doxepin, Singulair, Gastrocrom, midodrine, synthroid). I have been lucky so far with minimal side effects (a little drowsiness here and there) but I took Ketotifen for a week and felt really odd. It's hard to describe it, but I felt like I had really bad PMS - just not like myself at all, and very tired as well.

Has anyone had any experiences like this? My symptoms seem to vary so much that I don't want to write off this med, but I stopped taking it and the negative sensations went away (although ironically, it did seem to help with anaphylactic stuff while I was taking it - or maybe that was another coincidence).

As always, any input so greatly appreciated!

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Hyperadrenergic POTS, probable MCAD, HDCT (overlap EDS/Stickler Syndrome), Dermatographic and Cholinergic Urticaria, hypothyroidism, pituitary microadenoma, migraines, chronic pain

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Josie

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Re: Ketotifen
Reply #1 - 05/15/11 at 01:40:05

Hi Sarah ,

I haven't used ketiofen . I just wandered something as I looked at your meds and history . With a pituatry adenoma ( micro ) other hormones produced there may be affected . These are :- acth - adrnal stimulation . I wandered if you ahve had your adrenal function tested .

Also with the hypothyroidism have you been tested for hashimotos thyroisitis ? It causes hypothyroidism and is more common in pts with IA than in the general population .

Just a thought ( or 2 )

Josie

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Sarah4

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Re: Ketotifen
Reply #2 - 05/15/11 at 05:18:49

Hi Josie-

I just saw my endocrinologist and asked about thyroid antibodies. She told me she tested mine in the past and they were negative. Also, she has tested my cortisol (twice I think).

I am hoping that as we learn more about this she might have some other ideas about how to help. Nobody has been following the adenoma, which worries me a bit too.

Thanks for the ideas.

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Hyperadrenergic POTS, probable MCAD, HDCT (overlap EDS/Stickler Syndrome), Dermatographic and Cholinergic Urticaria, hypothyroidism, pituitary microadenoma, migraines, chronic pain

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Josie

Ex Member

Re: Ketotifen
Reply #3 - 05/15/11 at 06:38:38

Hi Sarah ,

I am pleased Wink

. A piuatry speclaist would be valuable to you . Who found it ?? Changes in your hormones would manifest as new symptoms . But with complex health as we have an eye is always a bonus . Wink

I am watching about ketiofen as I am not on it . I use piriton to the same effect ( masts cell stabiliser ) and I notice its action . I suspect ketiofen has a stronger benifit and I need all I can get .

Do you have any problems with fillers in meds ? Since I went corn flour and geletine free I am doing much better Wink

many hugs
Jose

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Sarah4

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Re: Ketotifen
Reply #4 - 05/15/11 at 10:41:08

Hi Josie-

I found out about the pituitary tumor a few years ago - almost a year after I weaned my son I suddenly started to lactate again, got severe migraines for the first time in my life, and put on 20-30 pounds in a couple of months after a lifetime of stable, normal weight. They gave me an MRI and found the tumor. However, oddly it seems to have acted up for that short time and now doesn't seem to be causing problems like it did that once. I live in a medically underserviced area in Northern Canada so it's hard to access specialist care (I already travel to Toronto for 4? other docs) so I am just kind of hoping the tumor isn't growing or doing anything that needs monitoring.

I don't know about fillers in meds. I do seem to do much better when I avoid gluten. How would I find out which meds contain which fillers? I think I am ok with corn - I'm not sure about food triggers yet. Thanks again.

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Hyperadrenergic POTS, probable MCAD, HDCT (overlap EDS/Stickler Syndrome), Dermatographic and Cholinergic Urticaria, hypothyroidism, pituitary microadenoma, migraines, chronic pain

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Josie

Ex Member

Re: Ketotifen
Reply #5 - 05/16/11 at 03:49:54

Hi Sarah ,

Regards the piuatry , I would ask the endocrinologist caring for your thyroid to keep an eye on it Wink

It their field Wink

All meds come with a list of ingredients . The fillers are listed here . Wheat can be labeled as wheat starch , gluten ( you know this soz ) modified wheat strach . Some have just starch , in this situation it is not possible to know which kind . So I would avoid Wink

Foods wise , a symptom diary may shed light on things for you . It helped me a great deal . The TMS site has a list off common food triggers :-
Alcohol , any vinigars , anything fermented , preservatives .
I found out all of these the hard way. Caramel colouring is a particular problem for me .
In working them out I would say follow your instinct . if you think something is bothering you , it probably is Wink

xxxxxxxxx

The bucket theory works well for me . Stress strirs it up ;-(

I shock , so i completely understand the feeling of it happening and not knowing where it is coming from . I spent 2 yrs feeling like I was going to be run over by a bus , just didn't know when . Yeah . I know i don't have control but my chemical ( medication ) barrier is working much better now . Im dodgy today , but on the right side of ok . I ahve the right side and wrong side Wink

I only worked out triggers as I got more stable Wink

The thing I did first was try and work out my early warning signs and medicate them Wink

Mine are , feeling grumpy for absolutely no reason , can't find my words , ears ringing . I would love to help you work out yours if you would like Wink

many hugs

Josie

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Sarah4

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Re: Ketotifen
Reply #6 - 05/16/11 at 04:02:03

Thank you Josie, I'm sure I'll have lots of questions for you. I think I am at the stage of trying to get stable enough to be able to work out food issues. It's interesting to hear your early warning signals - I have terrible ringing in my ears a lot, especially at night (or maybe it's just quieter then so I notice it more), and I also have lots of word-finding difficulties.

I will have to start a food journal. Right now I just tend to eat almost the same thing every day, except when I have to travel for medical appointments.

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Hyperadrenergic POTS, probable MCAD, HDCT (overlap EDS/Stickler Syndrome), Dermatographic and Cholinergic Urticaria, hypothyroidism, pituitary microadenoma, migraines, chronic pain

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Josie

Ex Member

Re: Ketotifen
Reply #7 - 05/16/11 at 06:04:43

Hi Sarah ,

I ahve to ask my partner if he can hear ringing !! The answer is most often no Wink

It kind of makes sense as the inner in is a se ringing small space and swelling in small spaces is going to have an affect . Also we have a tube going from our inner ear down to our throat called a eustaion tube . So swell ing at either end could disrupt the fluid balance in our inner ear Wink

Our histamine levels are highest at 2 am . So we should avoid anything new at bedtime . So this may explain the ringing worse at night Wink

I flush more in the evening . I do warm ear / ears , with flush speading . Sometimes only on one side of my face .

Ah yes , word finding . i call it a coupe moment , as one day i couldn't find the word for a coupe care Wink

I commenced hydroxizine ( vestril ) recantly - 6 weeks - it is being used by the NIH for brain fog and intersitial cyctistis . I am doing much better on it . less brain fog . Its an older H1 antihistamine . It can be drowsy making so is given at night to begin with . It may be worth considering Wink

I have done a guide to diary writing , I don't know if you like me to mail it to you ? I so I will PM my email addy for you Wink

It has only been with 3 good drugs I am more stable . For me these have been . Ranitidine 300mg twice a day , singulair 10mg once a day and hydroxizine 25mg twice a day . I am also on ceterizine 10mg twice a day and piriton 4 mg 4 times a day . These help with itching and my chest Wink

You will get there Wink

Please ask away
Josie

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Joan

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Colorado

Re: Ketotifen
Reply #8 - 05/16/11 at 08:43:17

Hi Sarah,

I get ringing in my ears from Gastrocrom. My doctor said he has other patients who also get the same thing. Theirs has resolved when they quit taking it. Mine, not yet, but I've gone back on it. It would be good to report this to the company that makes Gastrocrom. They have an 800 number and one of the options should be to report adverse effects. Even if you don't know for sure, they need to know, just in case.

Piriton is a first generation antihistamine, also called chlorpheniramine maleate or marketed as "Chlortrimeton" in the U.S.

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Joan

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Sarah4 Tutor Offline Posts: 34	Re: Ketotifen Reply #9 - 05/16/11 at 09:20:11 Thanks, Joan. I was wondering if the tinnitus may be medication related. I have also heard it's associated with cerebral hypoperfusion, and with POTS I have plenty of that.
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