hi all  

I have POTS, EDS and MCAD, currently working my way up on dosage of sodium cromoglycate. i have it in powdered form in 100mg clear capsules.

I started in Feb this year and now on just over 500mg per day, therapeutic dose is 800mg per day. I'm very hypersensitive to meds i suspect because of pots so it's had to be a slow gradual increase. i split the powder in the caps in to 10mg and work my way up in dose adding 10mg or so each week. I take 100mg 5 times a day with half a small bottle of water per dose. Sip the water every 20/30 mins or so, takes about 2 hours like this per 100mg.

my doc wants me on the full 800mg per day by about October. When i increase dose the only real side effect that i get is just feeling utterly out of it, and just not feeling right - it could be due to low blood pressure but i'm not sure. Passes fairly quick but it's not nice. Then as my body builds a tolerance to the increased dose I adjust and then the same feeling again. It's a bit like a merry go round the way i'm increasing the dose. i do notice however if i try and rapidly increase dose, or take my normal 500mg in a 15 hour period as opposed to my normal 18 the "out of it" feeling is much more prominent, also occasionally have a feeling of missing a breath and more tense in my breathing.

The "out of it" feeling is much more than nausea which is one of the listed sides, its very unpleasant.

This med have literally changed my life over the past few months, i'm back in the gym, got myself to a good body weight, and just able to do so much more so i'm really motivated to get myself to 800mg dose. However, the flip side to this is it can feel like such a battle increasing dose and dealing with side effects whilst maintaining a focus on long term benefit.  

I bore myself becoming so self obsessed with tiny increases in doses, avoidance of side effects, sipping the med every 20 minutes, so anal!   but i know it's important to increase slowly in my case. one part of me says, drop back down to a lower dose and avoid the sides, you were ok at a lower dose. But the other half says keep increasing for long term gain despite short term pain now. frustrating   With the POTS i just kind of do stuff anyway, and tolerate feeling dizzy. Luckily I dont faint, but harder to administer increasing doses of a medicine which I know can make me feel rough. I feel like a bit of a masochist!

i suppose my concern is even though i'm increasing the dose slowly the sides are still significant for me. i worry about iatrogenic risk, and wether or not I actually need and can physically can tolerate the full 800 - but of course i want to get to 800.

Any one else in a similar boat to me, get the out of it feeling and did you power through, or decide to stop at a level you felt was the max you could take?

Apologies for the long post/rant, can just feel a bit trapped taking this medicine when trying to up the dose. I blame the somatic hyper vigilance i clearly suffer from on the POTS - please excuse me!

Aaron

Hi Joan

Thanks for taking the time out to reply to my rambling post, much appreciated.

Plenty of good advice and things to consider in your post, and your right i'm going to increase meds on my time line.

i'm on a PPI drug instead of a h2, slowly coming off the PPI to switch to a h2 and i think that will help.

Thanks again for your post and support - it is sincerely appreciated

Aron

Hi Aaron,

I am sorry to hear you are having trouble increasing your cromolyn. It seems like a lot of mast cell patients have a difficult time starting the cromolyn. So don't be discouraged!!

 It took me months to get up to the 700 mg. I take now.  I started by mixing one vial in twice the recommended amount of water.  And then I took ONE TEASPOON every hour.  After over a year, I still sip it all day and can't take a full dose at once (unless it is a really symptom free day).  If I try to take it all at once, I get super dizzy and tachycardic.  (Maybe that's the POTS part)??

It sounds like you are doing exactly what you need to and listening to your body and what it can handle.

As far as the PPI's, many of us take both a PPI and an H2 blocker.  I have been on a PPI for years and without it my heartburn and chest pain is awful.  However (for me), it doesn't help the stomach pain or abdominal cramping at all.  The H2 completely stops those symptoms!
Each of us are soooo different!!

I don't have a formal POTS diagnosis, but my mast cell specialist feels like it's highly likely.  It seems that when my mast cell symptoms are more controlled, eventually the POTS symptoms improve.

I hope this helps.  Keep us posted and take care.    Lynda

Hi Serbo,

By all means...ask away!  That's how ALL of us learn.

I would love to get up to the recommended 800mg of the cromolyn.  It just doesn't seem like there are enough hours in a day! haaa    I have to admit that some days I only get 600mg in. (I'm not being a very good example).  I do however, notice that there is quite a significant difference in my symptoms between the 600mg and the 700mg. I do sooo much better on the 700 mg. That says a lot.  I think when we hit that optimal dose we just stop being symptomatic ALL the time and feel sooooo  much better. I love being able to spend most of my days "out of a chair" and doing things!  That wasn't the case a year ago.  

I am not sure how relevant this is, but I have lost a LOT of weight since I became sick.....I am lucky to hit 100 lbs. once in awhile.  I am not sure if there is a relationship between dosage and weight like there is with some meds.  So what might be enough for me, might not be enough for someone else.  Just a thought....

I understand the reasoning behind wanting to come off the PPI's. Like you, I have been on them for years.  I looked into the "inactive" ingredients in the brand I take....ouch!  It is full of things that are NOT good for us (both as human beings and as mast cell patients).  I talked to my pharmacist about compounding the brand I use. At least then you are JUST getting the pure form of the drug. So far they are only able to compound a couple of them.  I would imagine a patent has something to do with that.   I give you a lot of credit for trying to get off of them.  IMO I think commercial medications can be like toxins to us.

I wish you the best!  Keep us posted on how you are doing.  

Take care...Lynda

Hi Joan,

When they compound the Ketotifen does it come in powder form and in a capsule? Could you open it and start with a small amount or does it have a time -release factor? How often do you need to take it?  

I have heard some take both but I am not sure if that would change the dosage of either or both the meds???

Thanks for any input!   Hugs, Lynda

Thanks for the information Mike.  I am glad the Ketotifen is working well for you.  

It sounds like a good option, especially with it being in pure form.  

Keep well..Lynda

Joan:
I should reword mine is the same as yours, powder in a capsule. Not marked gluten free, but I know it's pure. My shipping costs a little more, about $5 but comes from Washington to STL in only 3 days via the mail. Am going to keep the info on your pharmacy. Always good to have another source. 60 minutes going over the bad spinal meds that killed people scared me some but talked to my guy up front & no issues over 15 months, so settled down. I know they had some problems up in Canada with some labs not doing a good job. Here in the US we are kind of stuck with going to a componding pharmacy since not FDA approved, but so are a lot of the supplements that are available including the one that I believe got me Glucosamine.
MikeV