LindsayAs you know from a previous post, I started cromolyn about six weeks ago. I know a few readers had recently started or were about to start cromolyn as well, and I wanted to provide an update and hear about your experiences.
At first I thought cromolyn may have been having a huge impact on my symptoms. Unfortunately, it’s not the wonder drug I hoped it would be, but I am still finding some benefits in it.
Although, in cromolyn’s defense, I was only taking one plastic tube four times per day for the first four weeks, whereas my prescription is actually for two tubes four times per day. Clearly I could benefit from cromolyn’s potentially positive effect on brain fog 🙂
I made an instructional “how to take cromolyn video” in case anyone else suffers from brain fog [I apologize for the autofocus and “credits” at the end – this is my first video:) ]
Cromolyn has helped with my itchy skin, rashes and other allergy symptoms. I have also noticed a lot less skin mottling:
I don’t know necessarily that the cromolyn should get the credit for the reduction in mottling – it’s hard to tell as I’m changing many medications at the same time – but it’s possible.
However, I have had a loss of appetite with the cromolyn. I’m that girl who will finish a pizza on her own. My claim to fame in college was eating three Sourdough Jack (cheeseburger from Jack-in-the-box) meals within a matter of hours. Of course, I had a little liquid encouragement, but you get the point. So only eating a cup of yogurt and a banana all day is a pretty significant appetite change. I gained a few pounds over the past couple years, so losing a few now isn’t an issue. But for those of you who already struggle to keep your weight up, that might be something to consider if you’re prescribed cromolyn. I should note that I asked some of my friends on cromolyn if they experienced a similar loss of appetite, and none had.
The cromolyn seems to be helping a little with tachycardia, but nothing significant yet. However, my heart will be confused for a while as I continue to ween off atenolol.
I’m now down to 12.5mg of atenolol per day – half my regular dose. And I notice. More palpitations. More fatigue. More tachycardia. More dizziness. Less awesomeness.
Unfortunately, with the reduced beta blocker I can no longer do any standing exercises, even walking slowly on the treadmill. My heart rate doubles just walking the three steps to my office front door, nevermind the entire flight of stairs I climb once through the door.
It’s a challenge, for sure, and I knew it would be. But I’m not about to turn back now.
Readers – I would love to hear your experiences with either a) cromolyn, b) getting off medication or c) how you remain awesome despite the challenges. You’re welcome to comment below, or if you prefer to describe your awesomeness in private, you can always email me at Lindsay@dysautonomiac.com.
“I said to my soul, be still and wait without hope, for hope would be hope for the wrong thing; wait without love, for love would be love of the wrong thing; there is yet faith, but the faith and the love are all in the waiting. Wait without thought, for you are not ready for thought: So the darkness shall be the light, and the stillness the dancing.” – TS Eliot
Smell ya later.
– Linds
I remember using sodium cromolyn in the beginning of my journey as a way of coating my stomach in case I ate something I didn’t know I was allergic to. I only used it before meals when away from home.
I’ve not heard of this medication. I thought I’d researched everything I could do for my food allergies. I’m going to check this out and talk it over with my doctor.
it might be worth checking out if you have allergy issues. cromolyn (oral, it also comes as an inhaler for asthma-like symptoms) is used to treat mastocytosis.
hmm, that’s interesting. did you find that it helped?
Are you taking any magnesium? It’s great for the vascular system and skin. I can’t get over the difference in mine. I was having nearly constant fungal infections under by breasts–that has stopped. The new moles on my back have nearly disappeared and the one on my leg that’s been there for 20 years is almost gone. It’s down to a small rough patch.
I added magnesium to my regime of vitamins to help with the muscle cramps and it did that too. My potassium had started running low and the mag helps potassium, but my magnesium level has never been low on any lab work. I read that a serum mag level does not give a true level. I’m still reading more to learn about it.
A few months back, I told my neurologist I started taking mag and he said he often recommends it, but all he had told me was to take niacin. So I added a separated B-complex to my morning meds. When I think of how good I could have felt 4 years ago…well, no sense crying over spilt milk.
Other surprising pluses: less shortness of breath, increased energy, better focus and concentration, decrease in pain, improved my singing voice, and my hair stopped falling out. It now has some shine and is not dry.
I’m using the oxide which everything I’ve read so far says is not the best to use. When this bottle is done I’ll try the citrate. OTC brands can be unreliable, but the Nature Made seems to be working. I normally use Nutrilite, but I don’t carry a separate magnesium.
I don’t know how it would interact with your medications. My neurologist told me if your body is getting too much, you’ll have some loose stools. I take 250 mg in the morning and at bedtime. Some sites recommend up to 1000 mg a day. Personally, I believe in starting at a lower dose and working up. I didn’t want to shock my system.
i’m so glad you mentioned magnesium! i was on it about a year ago, but then stopped and i don’t remember why. i don’t think there was a reason – just became overwhelmed with all the other medications. i still have half a bottle left, so i think i’ll give it a try again!
thanks again for your comment!
I think I was one of the ones who told you I was starting cromolyn, too. Well, at first I thought I had a horrific response to it (http://elizabethmilo.com/2014/09/20/poisoning-myself/), but then I realised it was a much bigger catastrophic relapse like I’ve never had, triggered possibly by the cromolyn. I’m only now back on the internet marginally after three weeks. Not good 🙁
i remember that you had a bad reaction to it. i’m so sorry to hear it may have triggered a relapse! that’s awful! that’s exactly what makes me afraid to try new medications – it’s scary when something that is supposed to help us makes us feel so much worse!
PS are you on Facebook? Will you be my friend? 😉
facebook.com/elizabeth.milo.54
of course!! i sent you a friend request today 🙂