Recently diagnosed with POTS / On Florinef

[hollzieanne]

Good Afternoon,

Let me tell you a little about myself. I'm an office manager, softball coach, volunteer EMT/FF, college student to finish my RN, and a full time single mother. A lot, right? I know.... Don't be thrown off though, I've always been a busy bee. 

Anyways, I fell ill in May 2015, it started with random bouts of heart palpitations (footnote: I was a smoker at this time). I was still functioning normally though, I just had the scares when my heart would do that funky beat, I'd get a little symptomatic and I'd lay down and force myself to go to sleep if it was severe enough. (After 6 trips to the ER in the first 2 months of this issue, and being sent away with a diagnosis of tachycardia and referral to follow up with PCP, I decided if I was going to die then I'd do it at home rather than go back). Anyways, I wore a 24 hr halter followed by a 30 day halter. I also did a stress test. My cardiologist didn't feel like there was anything significant going on and that the random palpitations followed by tachycardia were just that.... random. I still maintained my normal routines, I functioned fine, and I handled my symptoms as they came. It was never completely debilitating or life-altering. I cut out most stimulants(caffeine) and I no longer socially drank. (I was still smoking but I cut down on that drastically). 

Fast forward to last fall. September 5, 2016, I quit smoking. (insert standing ovation). 

I noticed within that first two weeks that life slowed down, a lot. I started to get into a slight fog mentally, I couldn't concentrate very long, I was fatigued and I just felt gross in general. I chalked it up to low BP(I normally run 90/60), and my body just trying to balance itself out from finally quitting the russian roulette with cancer. 

However, as the time went on, symptoms became worse. Fast forward to November.... guess who started experiencing what felt like panic attacks? Very SHORT but random and with no warning, they'd occur. I could be at the store, I could be at work, I could be driving my daughter to basketball practice, I could be laying on the couch... it did not matter. I'd get the "oh ****" feeling and the head rush followed by tachycardia and EXTREME fatigue shortly there after. I called my PCP. She was initially curious if it was in fact anxiety. (Again, if you look back to my introduction, I've always been a busy girl.) I assured her that it wasn't but I amused her anyways and started on a very low dose anti-depressant. I finished my semester with school, and thank God that I did because my symptoms continued to get worse. I started relying on rides if I had to leave town for anything just because I was scared of something happening while driving. I stopped the anti-depressant because it was making my fatigue A LOT worse. 

Fast forward to January - I'm nearly depleted entirely. Spring semester is starting up soon, I have to snap out of this soon, right? Wrong. I ended up taking a leave from campus the second week of the Spring semester and I stuck to only online classes. That's all I could handle. I could no longer drive myself the half hour to school, nor could I handle sitting in the classrooms because the random bouts of near-syncope were becoming a constant feeling with a relentless fatigue that just wouldn't quit. I ALWAYS felt like I was in a haze and I can only describe by saying it feel like taking a handful of sleeping pills and forcing yourself to function for that day. 

My PCP sent me to a neurologist, she was baffled and couldn't figure it out so it was on to the next. My neurologist ran an MRI - clean. Ct scans - clean. The only thing that would pop occasionally is my D-dimer levels. One day it was 1330. But, the ct they ran immediately following came back negative again. 

It wasn't until the end of February that she finally suspected Pots Syndrome. We did the orthostatic readings... the whole lay down, sit up, stand up BP readings. My BP was low and stayed low. I always float between 90-110 systolic. No more, no less (usually). However, my heart rate would go from the low 60's laying down and shoot up to about 120-130's after standing for a couple of minutes.  She ordered a tilt table test and that's where the fun began. I went to Hamot in Erie for this test... the RN didn't notice anything "too indicative" but sure enough, my heart rate increased and stayed elevated for as long as I was. 

My neurologist felt comfortable enough with that to start me on .1 mg of Florinef every morning. 

I will say that after a few days, I noticed that I was feeling a LITTLE different. I was more tolerant of daily activities, I was able to get through my work day without panicking too much about being left alone in the office for any extended period of time. I didn't have to be babysat at home anymore. Things were starting to look up. However, I've plateaued. And, I have to say, not much has changed besides the fact that I don't always feel like I'm going to pass out. I feel drunk 24/7, I'm still intolerant of being on my feet for more than a few minutes at a time and I still do not feel okay. I've been researching Florinef and even though it's most common for Pots, I'm not sure if it's the right fit for me because my BP doesn't bottom out. Well, at least it didn't. 

I've gone from a completely normal life full of activity and functioning normally.... to having to be driven anywhere I go, always feeling drunk and nothing ever feels real.

Help.... Does anyone else relate? What did you do to feel better? 

I'm desperate.

-Holly 

[BuffRockChick]

I'm awaiting diagnosis, so I can't say 100% for certain I have POTS yet.   However, I do poor man's stand test at home to see what helps.  Compression calf sleeves help me a lot.  I still have >30 bpm increase from lying to standing, but without the dizziness and such.  It helps me function a lot better, especially in the morning.  The other thing that helps me is salt + fluid.  I function better on days I have ramen soup for breakfast.

Here's a long list of things that can help:  

 

[BuffRockChick]

I've adapted by setting a timer for 5 minutes to do upright tasks, then lying down until my heart rate recovers - usually 7 minutes.  I can get quite a bit done a couple minutes at a time.  I feel a lot better doing this than staying in bed all day.

[corina]

Hi Holly, welcome to DINET. Florinef is just one of the meds that could help your POTS. Here is a link to the "what helps" section of our website. There are more meds and adjustments that could help you get a better quality of life!

 

 

[hollzieanne]

I appreciate the links, I have looked through those and will discuss them with my neurologist. I'm basically wondering if anyone else has the same symptoms? What's their story? What works best for them? What didn't work for them? Heck, I'm not even convinced my neuro has it right seeming my BP always runs around 90/100 systolic and it didn't change much during the tilt table. Who knows... this is all still new to me. All I know is I can't function anymore.

This is such a lonely feeling and it's so frustrating trying to explain how you feel to others. Finding this forum was a god send because now I don't feel so alone. 

 

 

 

 

[MomtoGiuliana]

My progression of symptoms was similar to yours.  I became extremely symptomatic during pregnancy and worse post partum.  I became so fatigued and physically weak I had to quit work and didn't go back to work for 10 months.  It took months for me to get a diagnosis.  I also went to the ER several times and was initially diagnosed with anxiety.

For me, a beta blocker, low dose SSRI, extra fluids and salt, and eventually, regular exercise, helped me recover.  I still take a low dose beta blocker and try to remember to drink fluids throughout the day.  I will have short relapses but basically I recovered greatly after about one year (this was 13 years ago!)

Most people do experience recovery from POTS.  It can take months or even years.  It is interesting how each of us is a little different and responds differently to different treatments.  It can take some trial and error to find what is effective.

[Lemons2lemonade]

Hi Holly,

First off, i can totally relate to what you are going through right now and had a similar beginning myself. I went through 3 of the worst months of my life before i began to get control of things. I actually sat in a cardiologist office once and refused to leave until they helped me, at that point i was on the brink of consciousness from moment to moment-- palpitations and the whole shebang. 

 Something that helped me a lot was biofeedback to stay calm.  For me the ability to stay calm and remain calm was the first hurdle i had to cross. I also had to train my brain to recognize that this is real life whether it feels like it or not. This might sound lame but i kind of just ignore it--if i focus on things too much or acknowledge that my perception is completely weird and off it gets worse. After i was able to achieve that--and it took a lot of self exploration and dedication to learn--i slowly began to reintroduce small amounts of exercise. Even if it was just lifting my leg up and down on the bed 5 times. For me the trick with exercise was little by little. As an athlete i wasn't used to that type of slow training--i used to just push through workouts. Pots for me is kind of like a tango--if i move with the ebb and flow of it things go well. If i try to overpower it with sheer force, i always get a negative consequence. Overdoing it would knock me down for days. After i got my tachycardia under control, i began swimming and it really helped propel me forward out of my physical plateau.

Another thing that seemed to help me was a period of rest. Maybe you could spend a week with someone to help watch your kiddo and just rest? This means no tv, electronics, stress etc. Maybe even limited talking to other people. Idk, it did wonders for me to just be alone and silent in a room by myself. Maybe use some vacation time or fmla?

 

I hope that helps and i am so sorry you are experiencing this. Never give up on hope.  I really thought my life was over. Today i can walk anywhere i please and swim for up to 2 hours, so it is possible. Also, if you ever need to just vent you can always pm me! 

[hollzieanne]

I'm so glad that I'm not the only one with the odd perception of reality during this time. That was a huge driving force in the beginning for my doctors to assume it was a mental issue. I assured them several times that there's a difference and I know beyond any shadow of a doubt that this is a physical condition. I do find if I don't focus on the fact that everything feels like a dream then I'm able to be more productive. When I focus on the fact that I feel like I'm in the middle of a vivid dream then all of my other symptoms become worse because of that anxiety that comes with that. This condition is ruining my life. 

I've been trying little bouts of exercise here and there. I do the leg lifts when I'm laying down and I try to walk as much as my body will allow it. I have sunflower seeds to suck on to keep my salt intake up. I'm not the best when it comes to fluids so I will definitely work on that some more. I do get nauseous when I'm symptomatic and the fluids worsen that so I'll just try to push them as much as I can when I'm not with an upset stomach. 

I'm scheduled for a sleep study coming up on the 21st. I know that this condition can definitely interrupt sleep schedules. I noticed that since I've been sick, I do wake up frequently through the night and it isn't very often that I'm able to sleep through the night and IF I do (Last night was the first time in a while that I could), I still wake up feeling completely fatigued and almost feel like I'm hungover. Everything is slow moving, I don't have the best balance but I'm able to force myself to get around and do what I need to do. 

I see a lot of people feel worse in the morning and get better as the day goes but I find that to be almost the opposite for me. I feel somewhat okay in the morning (other than the hangover feeling) and as the day goes, I get slower and slower and then by the time I get home between 3 and 4 in the afternoon, I'm wiped out entirely. Then I'll spend the duration of the evening laying down and taking it easy (as much as my kids will allow). 

Yesterday, I was symptomatic. It was almost as if I didn't even take my medicine even though I know that I did. 8 am every single morning is when I'll take my Florinef. It was BEAUTIFUL yesterday, over 70 degrees. The kids wanted to go out and play so bad after work but I physically could not even get myself to go sit on the back porch to watch them. So, we stayed in and watched movies together instead. It's so incredibly frustrating. Luckily they were okay with it because their nanny had them outside all afternoon before they came home. 

Also, I'm coaching my daughters softball team again this year. We have our first practice tonight. I've been coaching for 5 years now, and I'm so passionate about it. However, with my condition, most of my coaching will be observing and relying on others to assist with the physical side of things. It's going to be so hard... I just hope that I'll be able to keep most of my debilitating symptoms at bay so I can at least get through the practice or their games without bringing any attention to myself(this is my worst fear and why I avoid going to stores or anywhere right now... I'm always scared to have an episode in public.) 

Again, thank you everyone for your input. This forum really boosted me a little realizing that I have other people like me and we can all help eachother get through it. 

Thank you... thank you.

[dizzyape]

Hello, thank you for sharing! I am going through the same symptoms but I have not been officially diagnosed yet.  I have an appointment in the autonomic clinic in October.  I find I get these rushes of being lightheaded that is paired with that sensation like I'm in a dream.  Then my anxiety kicks in and I just sit there and panic about what is wrong with me and worry I'm going to faint.  I also get gastroparesis symptoms, tachycardia, a rush of pressure to my head and the feeling that my ear is filling up and can't hear well, fatigue, etc etc. It's so frustrating because I see all these people going through there day and I just want to feel normal like them.  Hearing that I'm not the only one with these symptoms does help. Until recently I had never even heard of dysautonomia and doctors kept telling me I just had anxiety.

 

[Lily]

My doctor says Florinef will not help unless you are also taking lots of water and salt.  My doc has me taking 8 - 10 grams of salt per day and at least 4 liters of water.  I do feel more symptomatic on days when I forget the salt.