As any one who follows my blog knows, I thrive on being unstoppable. I love being able to do any thing and every thing. I love arguing with strangers about how I’m not tired because I have TWO babies. In fact, the one time I felt stopped by any thing it was the cold. Negative 20 out, I became afraid of taking the twins out alone. And after an hour of the realization some thing was stopping me, I hauled ass out of the house and drove to town and did it. Nothing can stop me. Until it does.
So this, is not the easiest thing to talk about.
A year and a half ago I started showing symptoms of a relatively rare illness. I kept telling myself I was tired from the twins, all the while doing little bits of research here and there when I noticed some thing new come up. I would not talk to any one about it. I felt crazy. Finally I emailed a national foundation. I gave them my back ground; farmers wife, home schooled son, 9 month old twins. They told me I didn’t have this illness, I was just tired. I’m a tired mom, and I need to take some time to myself. They also mentioned I have to have a genetic marker for it. Shortly after this correspondence, I found out, I do in fact, have a genetic marker for it.
But I put it in the back of my head. After all, it was summer, time to get out and hike!! And then the fall came around. Being a farmers wife, the fall is when my husband comes back home. I have help. I shouldn’t be so tired. … well, after he recovers from harvest any way. But the exhaustion got worse. And I seemed to have a whole new plethora of symptoms. I was having so much trouble with things, that I finally said, I can’t ignore this any more. So I sat down and talked to my husband. And I went to the doctor.
At the doctor I expected to be told I was a tired mom, and I needed a break. But I wasn’t. I was met with doe eyes, and the doctor saying, “you are just too young for this. It can’t be this,” with concern. I have seen two neurologists, two internists, a cardiologist, and two GP’s. Every one has conflicting information. And it’s very frustrating.
What we have figured out, is that I have POTS. Weather it is primary (pots by itself), or secondary (caused by some thing else) is yet to be determined. And yes, it can be caused by the other illness, that I won’t mention.
POTS, is Postural Orthostatic Tachycardia Syndrome. It is summed up by an increase in heart rate upon standing. Sounds pretty harmless. And to that note, very few people who I have told understand the severity of it. When the neurologist said I had POTS, I didn’t even understand the severity of it. It just wasn’t that bad yet. But here’s what happens. The person lacks proper vasoconstriction (normal strength in their veins and arteries), they stand up, their blood doesn’t move properly, their heart races, and they get presycope because blood isn’t properly perfusing. The easier way to say that is, “I stand up and every thing goes black and I have to hold on to some thing so I don’t fall over.”
My cardiologist informs me that this is common for women during menopause, post pregnancy, and in adolescence. Pretty much any time our hormones change. About 80% of pots patients are women, and 20% are men. Cardio thinks that he can medicate me for a few months and the problem will correct its self because it’s purely hormonal. My GP laughed at this. Here’s what it is, it’s a dysautonomia problem. It is a problem with your autonomic nervous system. It is a neurological issue, that is commonly treated by cardio because the main symptom is in your heart. But absolutely any thing that your autonomic nervous system controls can be messed up. It causes so many more issues. Here is a link to dysautonomia international.
When I was told I had this, I truly didn’t get it. I didn’t get on facebook and join a support group. I didn’t do any thing different. I didn’t know it was a big deal. Until I landed in the ER. Now, to be fair, the ER visit was largely due to my mass amounts of water consumption (which helps treat POTS). But I learned a lot in that visit. Started taking pills to replenish my electrolytes. And found out the mass water consumption was actually helping me treat my symptoms. I had an amazing ER doctor who took a lot of time to research POTS, but ultimately didn’t know what to do with me.
The next day I got on a support group. And I was dumb founded at the symptoms every one had. The similarities in what I thought was another issue entirely. And the variances every one had. Some people were like me, just dizzy and black when they stand, having trouble with words, exhausted, shaky. But other people were in wheel chairs and on disability. I scoffed. Seriously, was it really this bad? And then.. every thing got worse for me.
For the first time I actually fell. I almost collapsed on my daughter. The spells of things going black were lasting longer. Some times I would start violently shaking during these, I believe in those episodes, I am very close to actually passing out (some people look like they have seizures when they pass out.) The episodes are becoming more frequent. And they get worse with heat and sun. People are starting to notice me acting funny when we are out. I’m having to explain myself. I’m getting to the point that I can’t bend over when I go out at all. Which doesn’t seem like a big deal, until you factor in the two little people I am always talking to at knee level. I started to feel sleepy all day. I realized my heart rate is frequently 160 while I sleep. And the dysautonomia causes severe sleep dysfunctions as well.
As it is getting warmer, things are getting much worse. I fell over a few times today trying to water the plants in the sun. My wonderful daughters pretended to fall over with me, they’re so considerate. I’ve been looking forward to this summer so much, the girls are big enough to run around and hike on their own now. We have a garden and I wanted to start every morning with them watering the plants with me and catching snakes. We have so very many gardener snakes. And this morning we did, and I didn’t handle it well. Every time I did any thing I was noticeably wobbly, I looked totally drunk. I’m sure in my small town some neighbor will decide thats my problem. I considered putting a sign up in my yard that says, “not drunk just weird” or some thing of that nature. I considered carrying around a piece of paper that says, “not dead, don’t call an ambulance. just watch my babies and tell them I took a nap.” Things are starting to get very scary. But I am also finally in the process of getting to treat it. So things should get better here soon.
For the record, I am treating POTS with a ketogenic diet and a heavy water intake. Cardio explained how this diet is helping me. I was honestly very surprised that cardio supported a high fat diet.
In the POTS community it is often said that, “pots is the most common disease you have never heard of.” Have you ever felt this way? Not known why things go black? It’s probably not just because you are tired. POTS is officially diagnosed with a tilt table test. But can be diagnosed in a GPs office or tested at home with orthostatic vitals. Lay down for ten minutes and take your heart rate. Then sit up and take your heart rate. And then Stand up and take your heart rate. For me it takes a minute or two before it starts to spike, so be patient. A normal person will have a change in pulse, usually between 10-20 bpm. But some one with POTS will have a change in 30 or more. One day I caught a difference of 90 bpm from sitting to standing. Which I think is becoming more common with me right now.
If you are afraid that you may have this, rest assured there is help. There are medications to help manage symptoms. But it might be a life time illness. There are good times and bad times, and flares and episodes. But it isn’t always bad. I’m just stressed out and in a flare I think. But with in the next month I should be on meds to help.
I’m going to pull the brain fog card right now and not gracefully or wit-fully end this post.
A blog post with in a blog post:
So, twin pregnancy: the gift that keeps on giving. Seriously. Now I can’t stand up with out looking like I’m drunk. On the same note of what the twins have done to me, I got a hernia too. Diastasis recti is extremely common after a twin pregnancy. So common in twins in fact, that some doctors will sew up the abdominal muscles while doing a Csection. At my 6 week check up I asked my OB if I had this separation of my abs, and she said I didn’t. Spoiler, I did. I did the research on how to fix it myself and it basically amounted to not being able to pick up my babies. So I decided I would take care of it after they got older. But just like a pair of ripped panty hose, if you keep wearing them, you will get a hole. My lovely daughters gave me a fabulous cough about two weeks ago, and I noticed my intestines sticking out of my stomach. So my panty hose ripped. So there’s that now too. Which might actually be making the POTS worse, but I’m not sure. I can’t really find any answers on that.