I Have a Silent Disease: my struggle with POTS

And it is silent until it’s screaming at you. I suffer from postural orthostatic tachycardia syndrome or POTS for short. As I type this I’m sitting at Urgent Care which my work provides, waiting for a doctor to see if I can get a liter of fluids to help catch me up and see about another long term solution.

I was diagnosed in 2014. Before 2014 I was highly active and finishing my doctorate. My life was outside running around all morning doing field work, classes, lab activities, and then the gym for a couple of hours of spin class. So to say I was out of shape, didn’t eat well, or in general didn’t take care of my body is beyond false. And that’s a common thread among POTS sufferers.

I first got sick the Wednesday before Halloween. The only reason I remember this so clearly is because I felt bad Tuesday night and went to bed early while my boyfriend at the time, now husband, was packing for a trip to Pittsburg for business. He was gone for 3 days and I know he hates leaving now because of what happened later.

I couldn’t keep anything down on Wednesday, called in sick and didn’t think much of it. We had a flu virus around campus, I was stressed and exhausted from writing and I figured my immune system was just shot because of it and I got the stomach flu virus. But it didn’t stop. I couldn’t keep anything down. Even a sip of water refused to be absorbed. I also didn’t have a problem using the restroom which exacerbated my dehydration. Finally I went to the doctor on Friday and immediately got laid down after they took my vitals. I was in good spirit but it took several nurses and eventually the head doctor (who was a doctor in the Army and still serves as a reservist) had to come in and poke me in the hand. 2 liters of IV liquid, anti nausea meds, a negative pregnancy test, and doctors order to rest try to eat some crackers and drink fluid and I was on my way.

Saturday my husband got back home and nursed me all weekend and I felt better as long as I was laying down. When I got up my heart started to race, I’d get light headed, and have to sit back down. Showers weren’t even remotely happening and I took Epsom salt baths for the next year with a shower or two a month sprinkled in there.

I went back to my doctor that Monday and told her something was wrong. I’ve been seeing these doctors for years for allergy issues and we’ve built a good relationship so when I say something is wrong, it doesn’t feel right, my heart is skipping a beat and I don’t understand why, they listened. I’m dizzy, shouldn’t be driving, and my world was constantly spinning around me especially when I moved my head. Everything just felt like it was sloshing about. Our doctors on campus are really amazing. We got an EKG done, some more blood work completed (I didn’t have a heart attack from dehydration or damage because I was SEVERELY dehydrated) and I was referred to a cardiologist.

Several weeks later I saw my cardiologist. In this time I tried to work on my dissertation but decided until I could stand the best thing for me to do was take a leave of absence for medical reasons until I got a diagnosis. This turned out to be one of the smartest things I could do. My dissertation got pushed to the side and spent a lot of time reading medical journal in between naps and just trying to do normal things. It was also in these weeks I passed out, a lot. One time I tried to work on my dissertation in my home office and started to feel hot and clammy. I knew I needed to prop my feet up and got up to lay down in bed. I made it a couple of steps to the hallway and down the tree fell. I don’t think I hit my head, but our brand new 9 weeks old puppy was right these licking my face when I woke up. Little stinker. He still gives kisses. He’s the big boy Groot who’s a constant feature on IG. This happened several more times getting up to use the restroom, get something to drink, getting up from the restroom, taking a shower that was too hot. I still had no idea what was happening. I was having a problem even thinking. My words weren’t coming, I couldn’t think of simple words and I felt like a walking, jabbering, fainting idiot. I was at a loss for really simple words too. Jargon for my profession that I’ve used fluently for over 5 years. That’s when my lab tech knew something was seriously wrong. Come to find out that symptom is called brain fog and it beyond sucks.

My resting heart rate when laying down was 68-72, around 84 when seated, and at or above 120 when I stood up.

I started to just google “standing tachycardia” in Google Scholar and came across POTS. A rarely diagnosed condition with no known cause but viruses do trigger it in some people. Women were more likely affected and more were diagnosed at a young age but after puberty. Check, check, check, and check.

Around the same time I found POTS and started to research that condition (not through WEBMD, if I believed that site I should’ve died from cancer dozens of times over by now) I had my first appointment with my cardiologist. We went through my history, drug use (none), cigarette use, medication, cardiovascular history, workout history, etc. We went through everything for an hour and twice to make sure I was consistent in my answers. He quizzed my mom and my husband as well. When that was all done we got my blood work done and he ordered a battery of medical tests. I had a halter monitor to look at my heart rate, EKGs, CAT scan of my head, Xrays, and an ECHO cardio gram. All of this while we’re on a single income mind you because I was on full medical leave but I was insured thankfully.

All of that, ALL OF THAT was perfectly normal. My heart was a work horse and doing just fine besides I had a lower pumping volume than he wanted to see but it was normal as well. For 2 months I’d basically been bed ridden so it’s not too surprising my pumping volume was a bit lower than he wanted to see. That’s when I broached POTS. To appease me ( I was insistent) he order a table tilt test.

The Cleveland Clinic has a good run down of what POTS is. I even debated going there for diagnosis and treatment after i got frustrated with all the normals I was getting from all my tests. There’s more I didn’t even write about here that dealt with eye movement, possible brain tumors…. it was crazy. But the Cleveland clinic has a list of things people have, most have 2. In the beginning, I had them all at once. At this time I still had no diagnosis. Just a crap load of tests that say, you’re fine when I knew I wasn’t. I was a triathlete and former college athlete, I knew my body well.

The table tilt test is a wonderful torture device. You are strapped to a gurney and hooked up to heart monitors kind of like a stress test. This gurney is slightly different in that it will tilt up from the head position and drop the feet. The purpose is to make me pass out. And boy did they get close. The first time I got stood up straight my heart rate soared, my feet felt insanely uncomfortable tingling and itchy, and everything went black but right as it went black I was lowered. I could hear everything so I didn’t lose consciences but that syringe to bring me back to consciences was in nurses hand. For the second part of the test, my cardiologist came in and we repeated that procedure twice more but with a alpha-agonist in my blood stream at two concentrations. Oddest drug I’ve ever been given. I could feel the blood rushing through each chamber of my heart. Could feel it being sucked in and pushed out. I could’ve ran a marathon on that stuff and not even thought twice about it. I felt like Superman.

I come back a couple of days later for a follow up and he agrees with me that I have POTS. It’s not anything that’ll kill me unless I pass out and hit my head. My heart is perfectly fine but it does produce an extra beat which feels like a palpitation. But we can control that with medication. Since it’s a full and healthy sinus rhythm the halter monitor didn’t pick it up.

For a lot of people with POTS they don’t get a diagnosis within the first 3 months like I did. I was lucky and knew where to do my homework and had doctors who would listen. Many go years without a diagnosis being told they have an anxiety issue. I could’ve easily left with that as well since I was finishing my dissertation and that’s an incredibly stressful time for anyone. I’ve read where people didn’t get a diagnosis for years.

Then it was back to my primary care doctor and we started to try all sorts of treatments and dosages. We played around with drugs to decrease my heart rate so it wouldn’t increase as much when I stood. I got 40 mmHg compression socks and anti embolism socks (I prefer anti embolism socks since I can wear those to bed and take naps in them). compression socks are hot but in the winter those bad boys helped so much and they kept my toes warm! We added a drug to increase the amount of sodium in my bloodstream to keep my blood pressure up. <– that drug took forever to work so for 6 weeks I started doing weekly IV hydration treatments to get me over the hump. I read a few articles where that helped and boy did it. Blood pressure was good everything was awesome after IV fluids. You just pee out the extra fluid but the salt remains so the water I drink gets pushed in there and my blood pressure stays more stable. Eventually the salt in the IV is removed from the blood stream and I’m back getting some more.

We get through the summer, all my drug dosages are figured out, timing of drugs is figured out, my diet is going strong and I’m making a good recovery and decide to get back to my dissertation. One and a half years later that bad boy is a massive novel but its done. Brain fog leaves after about a year. I haven’t passed out since we got me going on the drug formulation.

After a couple of years we take me off the drugs entirely and I’m allowed to use them as needed. We started that in the winter since I don’t have as severe a problem in the winter because heat absolutely kills me but I’m good in the cold. I was drug free for 2 years. Last summer I was drug free and fine. I’ve had a few ‘POTSY days’ here and there. 1 really bad POTSY day about 2-3 months ago but on the whole, not bad. I’ll score that as a win and properly managed POTS symptoms. Symptoms typically get worse around that time of the month but they’re totally manageable.

And then today came.

I have felt everything creeping up for 3 days. It’s Thursday today. I’ve been more tired. I’ve had a few extra heart beats that caught me off guard. My feet have been getting that itchy feeling when I stand up and it’s finally getting over 100 in the heat index at home. Everything that spells POTSY day is coming. So I increased my fruit and veg intake, salt intake, water intake and ate simple to digest foods like rice. I have an intolerance to wheat and milk. Those got cut for the most part. Normally, when I do that I rebound just fine. It isn’t a big deal except I feel slow for a day. This time it didn’t work.

I kept getting worse. My sleep was affected, the pooling of blood in my feet and legs was getting steadily worse. When I ate blood would start to pool in my abdomen. So I used the rest of the for sick leave and here I am waiting for a doctor at Urgent Care knowing that I have to get started back on pills.

The pills I take have a few side effects. They slow down my GI tract substantially so I’m not hungry (yay odd weight loss flex) but it also means I don’t have normal bowel movements and get to start taking an herbal supplement that helps that. I do see a Chinese herbalist and they really do work for me although 1 of the 3 supplements really doesn’t seem to do anything. My prescription meds also make me insanely tired when I first start taking them. I’m just not functional while my body gets use to everything being slow. My muscles are incredibly weak for the first day while I get use to it. Once I get over that first 24-48 hour hump I’m better than new. And I sleep constantly for the first couple of days, which my body probably needs.

Regardless of the meds it will take time before my body can handle full on heat so I have to be careful. I also will have to be careful about regulating my body temperature. I feel huge swings between hot and cold. It could be 80 degrees outside and I’ll feel cold and have goose bumps. No drug is going to save me from that and I’m not going to micromanage this that much. I just get to dress is more layers and wear sleeveless tanks with a cardigan. Fans help and hurt. When I’m hot I’ll be hot until the next pass of the fan and I’m freezing. That dance plays out especially bad in the afternoon.

There’s certain things I don’t want to do because I’m scared I’ll pass out or feel horrible for a few days so it’s not worth it.

1. Drinking: I don’t drink more than 2 glasses of wine or I’ll nurse a pint for over an hour. I have become the cheapest drunk around. Drinking always makes me dizzy. I don’t even have to be drunk. 1 drink and I start getting dizzy. It isn’t worth it, it isn’t fun and I feel horrible and not the life of the party like I normally am when my POTS is really acting up when I have a glass of wine.
2. Ride my bike: I loved riding my bike for hours on end. But now with dizzy spells that happen and the town I live in has zero bike safety enforcement it just isn’t worth it.
3. Vacationing anywhere hot: Grand Canyon or Las Vegas? Have zero desire to go to either of those locations. Although we are going to Hawaii this fall and hiking will be occurring so maybe? Although having a POTSY day where I can just lounge by the pool and read a book doesn’t sound horrible. That’s pretty much what I do at home, minus the pool.
4. Showering without my husband. At first I wouldn’t ever shower with my husband or mom being home and I left the door open too. I’ve had to sit down mid way through enough showers that the risk is just way to high. That’s why I bathed in the bathtub for a year.

5. I avoid heat and the sun like a plague. A plague on both my houses for sure. Besides skin damage, the sun heats my body faster now not to mention just being some place hot on top of it. This summer is going to be a killer.
6. Cheese and wheat: I LOVE Alfredo. Alfredo does not love me. Now we’ve adopted a more Asian flavor of dining since I got sick since that triggers so many things that it never triggered before. Besides my drugs messing with my GI tract, adding cheese (especially cream and soft cheeses) and wheat is just murder to my system. Most days a little is ok, but I haven’t been to an Italian restaurant more than twice in the last five years and that use to be a food group for me.

The nurse just told me the doctor is heading in shortly so I’m going to wrap this up. Anyone with silent illnesses know you’re not alone. They super suck. You’re suppose to put on a smile and suffer through it and that’s what I end up doing most days but every now and then take a you day. You have to take a you day otherwise you let the condition manage you instead of managing the condition. I’ll take two days of sick leave and this weekend to recover. Luckily my husband is absolutely amazing and will do everything necessary so I can let the drugs do their work and I’ll get back faster because of his help.

Having doctors that listened to me at the OSU clinic and having a mother and husband that was there to help me. The importance of having that supportive network can’t be stated enough. It was amazing and I firmly believe it’s the reason I recovered so quickly. Some people on message board are wheelchair bound because they pass out so easily. I was there, but I’m not anymore.

The biggest continuous struggle I’ve had as been the fact that it’s always in the back of my mind. Everything I do is geared towards managing or not inflaming my POTS. Do I go crazy every now and then and order that second pint of beer? Yeah I do and then I regret that pretty quickly. I rarely even finish it. My husband does. Do I order the cheesiest nastiest thing on the menu sometimes? You bet ya. I know what’s going to happen and I just let it. Worth it every now and then as far as I’m concerned. I worry about working outside. And I work in a Horticulture Depart. I’m a Plant Pathologist by trade. My work is outside. Plants grow outside or in greenhouses. Greenhouses can be worse than outdoors and very often are. I do all the work outdoors that I can in the morning and try to be done before noon but sometimes I can keep that going till one. If I have to walk plots I can typically do that in the afternoon too but if I’m having a bad day I prefer not to do it.

Most days are fully managed except this week. Sometimes you have to go to the doctor. Luckily I have a doctor who trusts me enough to know that I’m not going to screw around too much with my script. I have some freedom with my dosage, 10 or 20 mg per day. I know to space them instead of taking it all at once. I can go in and request an IV bag if I need to because they have that freedom to do it. Most practitioners probably won’t. I came to mine with 3 published studies for him to read instead of hey I want to this because.

Doctors are scientists as well, sometimes I’ve found that’s the best way to approach it. Find the article instead of ‘I read it in a blog’. Blogs in general aren’t good scientific resources which is why I try to link all the articles I’m citing to show I do come from a scientific understanding instead of Jane Doe on this blog said this treatment worked for her. I wouldn’t trust that as a doctor but if you showed me the study and I could digest the validity of that trial and the finer details of the study, I can be convinced of almost anything. A scientist who is unwilling to let progress in their field reshape their viewpoint isn’t a very good scientist, and doctors are scientists.

Silent conditions just suck. I’ve felt like trash before but stood up in comfy shoes and given a 4 hour lecture before. It’s my job, I have to do it but you better believe I’m sucking salt and wearing compression socks to keep as many things controlled as I can.

Sadly, sometimes it’s all you can do. Grin, bear it, and do everything you can to make sure tomorrow is a better because tomorrow is definitely going to be a better day.

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