LindsayThis post isn’t about catching a few extra zzzzzzz’s in the morning before it’s time to wake up. In fact, the only alarms I use anymore are medication reminders. Sure, I love a dream-filled sleep as much as the next gal, although these days dreams of postural orthostatic tachycardia syndrome (POTS) have replaced my staple dreams of cute men and buckets of money. And my recurring nightmares where I’m back in high school and can’t remember which class is next, and if I’m late I’ll get Saturday detention, based on real-life experiences of course.
As you can tell, Catholic school really did a number on me.
No, this post is about pressing snooze on the biological clock. As you know, the BF and I have begun the family planning discussions recently. I don’t really feel my biological clock is ticking, although I’m sure the BF and anyone with a dog in a ten mile radius will tell you I need somewhere else to direct my maternal energy. I just know we face a lot of obstacles – I’m older, and there is already a higher rate of miscarriage for POTS patients than among the general population (according to this Facebook chat with Dr. Blitshteyn). So there isn’t much time to waste.
So I stopped taking atenolol, the beta blocker my doctor prescribed to help with POTS symptoms. It hasn’t been bad, as long as I don’t have anywhere to go or anything to do and can lie in bed all day. Otherwise, it has been awful.
My blood pressure has been all over the place, as has my pulse pressure (or pulse point – the difference between the systolic and diastolic blood pressure rates). Blood pooling, ability to stand, balance, allergies, breathing, lightheadedness, pain, adrenaline surges – all have been worse. The only thing that hasn’t been much worse is the tachycardia (fast heart rate), which is ironic since I was originally prescribed the atenolol to help with tachycardia.
My tachycardia is always worse during the summer due to the heat, but I sometimes forget that my fatigue is much worse during the winter. This is only my third year with a POTS diagnosis, so I’m still somewhat of a rookie at this. That fatigue combined with no medication has been almost debilitating. For the past few weeks, if I want to leave the condo, I’ve had to take about 7mg of atenolol.
It’s difficult enough to work a steady job, and without atenolol, I’ve called in sick more in the past month than I have all year. I have had to pull over in my car a few times and lie down in my seat before I could continue without blacking out. I haven’t been able to exercise for months – even just a very short walk. There’s no way I can walk down the aisle and get married like this. I’m still not even sure I’ll be able to do that with the atenolol, but that’s a story for another post.
So, I gave up trying not to take it, and I’m back on 7mg daily, or a quarter pill. Which means I’m pressing snooze on the baby button. It’s a step backwards, but I’m only on a quarter pill, so it’s not a huge setback.
In her book, How to Be Sick (I highly recommend it if you have not read it), Toni Bernhard talks about being patient with our illness, being supportive of our bodies and what they go through. I have put my body through a lot of shit over the past month, and I’m really proud of it for surviving this. But it needs a break, and I want to make it through my own wedding.
I am surprisingly okay with this. Maybe it’s because I know I’ll try to stop again after the wedding. Or, maybe it’s these beers I’m drinking, because now that I’m back on medication, I can have alcohol again.
Either way, I shall try again.
“Ever tried? Ever failed? No matter. Try again. Fail again. Fail better.”
– Samuel Beckett
Smell ya later.
– Linds
Sorry things are so tough right now. It really makes me nervous to think about going off atenolol at some point. I hope your body can adjust quickly…
thank you!
So sorry to hear about your struggle coming off the meds. I’m starting to think about weaning myself off some of my meds too ready to be able to try for a baby once we’re married so I totally share your thoughts and feelings. When it’s right for you and your body it’ll work out. In the meantime I hope your symptoms settle down. I’ll keep everything crossed for you Jx
thanks. and congratulations on your upcoming wedding!
I have had to permanently press the snooze button on having another child. I count my blessings that I was able to have one before my illness got really bad, but I really pictured myself with 2 or 3 rug rats running around the house. Good luck when you try again!
thank you! i’m so sorry to hear that you are unable to have another child. i’m sure that must be very difficult.
Hi Linds,
Sorry your having an awful time trying to come off the atenolol. I too take the amount you are on, and without it I a can’t function much either. Do you still take yours in the morning or night again? I’m still night.
I understand you want to be medication free to have your bub and it’s worth a good shot. But don’t give up hope as there are some pregnant POTS ladies who have safely taken a tiny dose beta blocker while pregnant.
Hi Jo!
I’m still taking the atenolol in the morning. I may switch that up again – as you know, if I take it at night I get lots of tachycardia during the day. But if I take it in the morning, I get lots of adrenaline rushes and insomnia at night. Frustrating!
You make a great point – some people do stay on medication while pregnant. My doctor recommended I get off, but I will likely discuss this with him again before trying!
My daughter was diagnosed with POTS 2 years ago last month. She is 20 now. As you know, it has been a hard 4 years (she was sick a couple of years before she was diagnosed). The best advise she received was from a doctor at the Vanderbilt Autonomic Clinic in Nashville. Exercise every day! Even if it is only for 1 minute. What we do with out bodies today prepares us for tomorrow. I know you have people giving you unsolicited advise all the time. Believe me I know!! I get sick of hearing what we should be doing and being judged for what we are not doing but I had to tell you this because it really works and has been proven to work. Read about Dr. Levine in Texas and the “Grinch Syndrome”. You will be able to walk down the isle!!
Hi Cindy,
Thank you for your comment! I’m sorry to hear your daughter has POTS – I know it isn’t easy! With being back on atenolol I am able to do cardio exercise again, only in the form of a recumbent bike or very short walk, but it’s better than nothing. I agree, exercise does make a big difference and has helped my POTS tremendously over the past few years. Without the atenolol I wasn’t able to do cardio, but still did situps or leg strengthening exercises regularly.
I hope your daughter is feeling well!
I’m pretty positive I need that freaking book.