LindsayAloha.
I promise I will try not to be that person who goes to Hawaii once and says “Aloha” and “Mahalo” to everything.
Mahalo.
As you know, the BF (husband…whatevs) and I returned from our honeymoon on the island of Kauai. It was my first time to Hawaii and I was really looking forward to seeing the crystal blue portion of the Pacific Ocean (unlike the murky green portion we have going on over here), spending time with the BF, and relaxing after the wedding.
Fortunately, I was able to do all of those things.
Unfortunately, that wasn’t all we did. Our first official souvenir was a receipt from Kauai Urgent Care.
The flight to Kauai was pretty uneventful. We sat in first class, which was awesome. I had a bit of tachycardia, which wasn’t awesome, but was bearable. For the last hour of the flight, I started having pains in my arms and legs. It was an achy pain, instead of a stabbing pain, so I wasn’t concerned it was something serious, but they were very painful. It only got worse once we got off the plane.
The pains continued, and a couple days later I also started having a lot of chest pains, palpitations and tachycardia. We stayed in the hotel room that day. The next day things were worse, so we took a drive to Urgent Care. The doctor at Urgent care had never heard of Postural Orthostatic Tachycardia Syndrome (POTS) and had no idea what to do for me. In her defense, she was willing to run whatever tests I wanted, so we found out my potassium was pretty high (I requested the test because I actually thought it was low). Then they sent me on my way.
The chest pains and palpitations were a little better the next day, so we did some sightseeing and took a very fun ATV tour around the island. Kauai has to be one of the most beautiful places in the world, and I’m glad I was able to see some of it. The remaining few days of the trip were uneventful. I still felt very off, but convinced myself I had to “fake until I make it”. Being sick was starting to have a strain on our honeymoon and relationship, and the BF deserved a great trip for all the support he gives me all the time. I think he enjoyed the rest of the trip, and if nothing else, I enjoyed seeing him enjoy the rest of the trip.
Unfortunately the flight home was more challenging than the flight to Hawaii. We weren’t able to upgrade to first class, and the flight was pretty bumpy. At one point while walking back to my seat after using the “lavatory” (seriously…can’t they call it anything else?) the plane hit a rough patch of turbulence that was so bad that I had to crawl part of the way back to my seat. Vibrations or disturbances like that tend to make me dizzy, and my dizziness doesn’t necessarily stop when the turbulence stops. Despite taking a beta blocker and getting plenty of fluids/salt, I couldn’t keep my heart rate down. I spent the rest of the (6 hour) flight staring at the seat in front of me while trying to listen to music and not freak out.
We have now been back for over two weeks, and I’m still not feeling well. I’d like to think I have made a lot of progress in the 6 years since I got sick – I can go to the gym and do a short walk on the treadmill, go out to dinner, I can get up and walk a few feet to the bathroom without being reminded that I have POTS.
Well, I used to be able to do those things.
I feel like I have regressed back to the beginning. I can’t walk the 20 feet to the bathroom without feeling like I’m going to fall over. I walk near walls for support. My arms and legs feel like jello, as if I don’t even have the strength to lift up a pen. After sitting up for a couple hours I start to get a bad headache and my vision starts to go black. I have already doubled the beta blocker, and am now considering tripling the dosage. I am trying to exercise, because I know in the long run that will help, but I’m back to 5 minutes on the stationary bike, followed by lying down on the floor next to the bike for 10 minutes. I still have a lot of pains/numbness in my arms and legs. In all honesty, it’s scary sometimes, and there are times I’m afraid to be alone.
Things will get better, but they won’t get better overnight. I struggle with whether the wedding and honeymoon were worth all this, then I struggle with even asking that question. Would I do it all over? In a heartbeat, because the BF deserved it all. Do I want to go back next year? No.
I’m trying to remain positive about it all. If nothing else, the BF and I now have a story about our adventure driving 30 minutes in the rain and getting lost trying to find Urgent Care. And, while I feel like I have regressed back 6 years, everything isn’t the same. Now I have someone who has promised to love me, even during sickness.
How on earth did I manage to pull that off?
“There is always some madness in love. But there is also always some reason in madness.”
— Friedrich Nietzsche
Smell ya later.
– Linds
Hi Linds, I think your amazing for going through what you have and still seeing some positives. I know it’s all we can do or we will go crazy. If being positive fixed pots we could surely get better, but sadly it doesn’t. More so it lures you in to thinking your getting better until you try something like get married or taking a holiday. I hope you get back to where you were pre wedding very soon!
I hate that you are at a point where you are sometimes scared to be alone. The husband is definitely an amazing guy but don’t forget that you are too. This horrible illness isn’t who you are and that’s why he went down that aisle!
Thinking about staring at the back of the chair in front of you for 6 hours on the plane feeling how you did makes me feel sorry you had to go through that. Were you able to take something like Xanax to help you? Do you know how your potassium got high? What’s next for you – are you still awaiting your mcad test results?
Hi Jo! thanks for your comment. unfortunately i don’t have xanax or anything similar. i practiced meditative breathing, and that definitely helped. i’m not entirely sure why my potassium was high. because of the strong aches and pains in my arms and legs, i was starting to wonder if my potassium is low, so we stopped at a local hawaiian market and i picked up a potassium supplement. i took a small dose for 2 days. i’m not sure if 2 days of a small supplement would make it high, or if it was already high. i have an appointment with my PCP next week and will ask then.
Next is: 1) still awaiting MCAD 24 hour urine tests; 2) appointment w/ PCP next week to discuss pain/tingling in legs & arms; and 3) appointment with my POTS cardiologist at the end of july [long wait list 🙁 ]
How have you been feeling, Jo? are you still taking a beta blocker?
Hawaii looked magnificent 🙂 So sorry to hear how the trip has affected you though – why oh why must everything nice we do be paid for?! Really hope you stabilize again soon x
thank you!
Knowing our bodies the potassium you took may have had that effect. I’m so sensitive to any meds or vitamins.
Yep, still on trusty atenolol. I got down to about 5mg and was doing ok but the uneven tachy beats and afternoon BP overshoots returned so I went back up and I’ve been taking about 5mg at night and morning now.
I’m going to try florinef again too. I took a quarter tablet the other week and had awful diareah that afternoon so didn’t want to dehydrate by taking it again the next day so I’ll try again soon to see if it was coincidence. So many people are doing well on the florinef, I know you had an awful experience though. I tried it for about 6 weeks before and it wasn’t too bad but I was only taking half so couldn’t see any huge benefit. It dropped my hr even more at night and I already have night Brady so it was hard to take the atenolol and I need that. Ahhhh the (not so) joys!
i’m on the 6 mg of atenolol at night and in the morning, too. i’m considering adding another 6 mg right after lunch – lately i’ve been getting tachycardia regularly in the afternoon.
let me know how the florinef works for you! i know a lot of people who say it has made the biggest difference in their symptoms, so it seems to work well for some!
My thoughts: “Why oh why is the tradition for the honeymoon take place after such an energy sucking event?” (Of course I know why. Just saying.)
I considered making ours a month later so I’d have recovery time and more energy to be a honeymooner, but I wanted to do it like “normal” people.
i agree! a part of me wishes we waited at least 6 months for the honeymoon, but then again, i can’t imagine going right back to my life like nothing happened after getting married!
Happy Wedding! <3
Those arm and leg pains could be arterial constrictions. Which over 100 mg. toprol can be huge contradiction. I have those and use channel blockers 420 and fast acting 30 a piece. for bp spikes. I still take toprol mall doses, 3 times. Never going over 100 pref. 90 . When I got those leg and arm pains heart attack from constriction is next. Up stairs also bad.
I quickly get channel blocker and two big magnesium ( 3 times daily) and lots potassium. Arms should not hurt. I wih doctors would tll us that. Huge warning.
Limit liquid to keep hr bp low. I take iuretics. I don’t have pots anymore. Cleared with hormones raised. fixed quickly. But p. hr spikes scary. Mine from meningitis lyme several times.