LindsayAs you may remember, I recently had an appointment with my postural orthostatic tachycardia syndrome (POTS) doctor regarding changes in medication. In my last post I talked about the new medication I’m on, cromolyn. I’ll provide a cromolyn update in a week or two – I want to give it a little more time before I make any official comments – but so far it isn’t proving to be the miracle drug I was hoping for.
At that appointment, one of the things I wanted to discuss with my doctor was getting off medication. All medication. See, I’d like to have kid(s) some day, and I’m getting to that age where, as my doctor so eloquently put it, it’s “time to shit or get off the pot.”
Which is like the most romantic description of babymaking I have ever heard.
Let’s face it – despite what my Facebook profile says (happy almost 30th and 60 months birthday to me!), I’m not getting any younger. If I’d like to get knocked up sometime, it’s time to start thinking about it. But before worrying about if I can stand and hold a baby without passing out, if I can keep my vitals normal while pregnant, if I can even get pregnant, I need to figure out if I can get off medication.
Because if I can’t, the baby question is already answered.
The majority of the medications I’m on can be stopped without any preparation. However, getting off atenolol will be a challenge. As you may remember, atenolol is a beta blocker, also known as a beta-adrenergic blocking agent, which blocks norepinephrine and epinephrine (adrenaline) from binding to beta receptors. Essentially, it helps keep my heart rate from unreasonable spikes, and it helps control my inappropriate adrenaline responses. Keeps me from punching people in the face for no reason.
I have been on atenolol since three months after being diagnosed with POTS, almost 3 1/2 years ago. As I have been on atenolol since the beginning, I don’t even know what my POTS is like without it. But we shall see.
Each month, I will reduce the dosage by a quarter pill. I have already reduced by a quarter, so I’m down to 3/4 of a pill. In three months, I will be off it completely.
To be completely honest, I’m afraid of getting off medication. I can already notice a difference at 18.75 mg vs. the 25mg I was on a week ago. Atenolol and birth control allow me to function every day without intense migraines, persistent palpitations and severe chest pains. I worry that they have become a part of who I am. That my existence and medication cannot be separated. That I won’t recognize myself without them.
But I also worry about a life where I don’t ever try for anything, where my destiny has already been decided. It is time to discover what I can and cannot do.
Time to shit or get off the pot.
“Decide that you want it more than you are afraid of it.” – Bill Cosby
Smell ya later.
– Linds
Hope all goes well coming off the atenolol. From what I’ve heard the side effects can last a while so it may be hard to know if coming off is side effects of stopping or the pots for a while. As you know I reduced from 25mg to 12.5mg and that wasn’t too bad, then 12.5mg to about 6-8mg. I am noticing this reduction but I think it’s because the adrenalin isn’t blocked as much so my heart rate seems more jumpy than as tachy as it was pre-atenolol.
Just wanted to add that on the pots forum I am in there have been a number of ladies in their 20’s and 30’s having bubs. They stayed on a beta blocker that their doctors advised was ok to take during pregnancy. One was metoprolol and another more similar to atenolol – bisoprolol (one daily dosing). They had to come off their other meds like florinef though.
Thanks for your comment, Jo. My hr also seems more jumpy after only reducing the atenolol by a quarter pill. I imagine that will get worse as I continue to decrease.
I have heard conflicting reports about whether some beta blockers are okay during pregnancy. As I’m already a little “old” to be having kids, my doctor thought it would be best to get off all medication, and I agree. If I was younger I think I’d look more into switching to a bb I could take while pregnant.
How long did it take for you to go from 25mg to 6-8 mg?
Hi Linds, I was taking 12.5mg x2 a day. To reduce I cut the morning pill to 6mg for a couple of days or so then kept shaving it down each morning til I was literally taking crumbs and then stopped it. I was then just taking 12mg a night and I have shaved that down each night to get to the 6-8 mg that I would be on now. I just wanted to get down to the smallest dosage that I could cope with. Shaving it down seems easier than just dropping by a quarter at a time. I could do with more for the tachy most mornings but I now get low bp (never used to)! Shave done the pill each slowly I say. We are more sensitive to medications with our conditions so I found this the best way for me. Best of luck!
Sorry, timeframe was probably over a month.
You’re so brave!! I know this is a big and scary move for you.
Thank you! It is scary! But then again, it’s certainly in my nature to prepare for the worse, so hopefully it will be much easier than I anticipate! 🙂
Here’s hoping you do ok off the meds!
I’m on anti-depressants, so I really resonate with your fears about who you are without medication. Maybe think about getting support from a psychologist while you transition? They can be really useful – even just to vent to!
thanks for your comment. talking to a psychologist is probably not a bad idea – when i transitioned off of celexa i wish i would have talked to a psychologist. that one was tough!
I like what you said in your last paragraph. “But I also worry about a life where I don’t ever try for anything, where my destiny has already been decided. It is time to discover what I can and cannot do.”
It takes a lot of guts to make this decision. Good on you. Lots of positive vibes I am sending to you. XO
thanks, friend!
Just a thought, Have you thought of seeing a perinatetologist Their focus is high risk pregnancy. You can have a consult to weigh the pros and cons of being pregnant they also work with geneticist and your Ob Dr is you were to get pregnant, but it’s better to have everyone on the same page and have all the information on the table for your own peace of mind. Just a thought.
Kelly
I hadn’t thought of seeing a perinatetologist, but that’s a good idea. Thanks for the suggestion!
Hi! Was wondering how the cromylyn went and your overall thoughts about MCAD. I am in one of those iffy-ish places too and have no idea about whether I have MCAD or not. Many thanks
Hi! Thanks for your comment! I will (hopefully) get around to writing a post about the cromolyn soon, but so far I think it’s helping. It’s a little difficult to tell. I have less digestive issues, but it has also reduced my appetite. It has also helped a little with the tachycardia, but just a little. I do still get some rashes and other redness, but maybe a little less than before cromolyn.
Oh Lindsay, I know what you mean about the meds!! But you can do it, I know you can… it may not be easy, but well worth the effort… you’d make such a fabulous mom and Sai a wonderful dad! Just get good medical care during pregnancy. Please let us know how it goes… I’m happy for you, but also realize the sacrifice your body has to make… <3 Love ya Linds!
Thank you, Stacy!!
That’s really hard. The baby stuff is a painful topic, and I get that so much. I’ve had chronic pain for years, but the POTS and the very serious Dysautonomia stuff is new in just the past 3. When it started my body pretty much shut down cold. I really empathized with wondering if you could be pregnant and survive being off your meds. Working toward not passing out just to prove you could hold an infant, much less chase one around- is a very familiar thought of mine, too. We are in the boat together girl, and this boat will stay afloat! Our hope is the water underneath us, and we will keep that candle in the window if the Lord allows this big big dream to come true. Congratulations on your engagement! happy happy!