My last post was in August of last year. By the end of September, my dysautonomia took a turn for the worst.

I do not know if it was the season or if it was the natural course of living with a condition like this. I do not know if the house we were renting that had a mold infestation we didn’t know about that made me more ill or if that is a coincidence.

I found many days I was fighting to simply “be okay.” I would have good days, and then I would have horrendous days where I tried to stand, and I quickly fell to the ground. I had to crawl to get what I needed. The indignity of it all, when I retell this, does occur to me. But, at the time, I simply did what I had to do… like I do. Like we do.

My blood pressure would plummet, and sometimes my heart rate would not increase to try to correct it. I would have difficulty speaking and on two occasions ended up in the ER middle of the night, because my husband and I thought I was having a stroke. I would wake up with parts of my body numb from lack of blood flow, difficulty figuring out where I was and the most troubling inability to express myself. I was speaking through a fog, and I couldn’t be sure the words being said made sense through the obscure sense of disorientation.

Most-oft, because of the lack of awareness about this disease, doctors concluded I was dehydrated. It didn’t matter that I had drank nothing but water with electrolytes during the day. And, I wasn’t correcting the doctors I would encounter, because I was tired. I was tired of having to educate the people I had been taught would protect me and would know better.

My dysautonomia symptoms are also not clear-cut. I am diagnosed with Postural Tacchycardia Syndrome where the heart goes above 120 beats per minute when standing. In addition though, sometimes my blood pressure is spiking now when I stand up, and my gut has been shutting down lately leading to all sorts of bloating and symptoms of severe acid reflux eating even small amounts of food. I am freezing at times, or my temperature will suddenly be higher than normal with a slight fever. Other times I feel hot, and my temperature is low. My thyroid is tested repeatedly as a result, but it is always functioning well.

My neurologist explained that many of these diseases of dysautonomia can occur on a spectrum. They can also present differently at different times depending on the cause.

In my case, the cause is believed to be Ehlers-Danlos Syndrome. Testing using the valsalva maneuver indicated blood pooling in the artery retuning to my heart which points to blood vessels that don’t constrict the way they should. This is a breathing test using forceful exhaling to see how blood pressure and heart rate responds. My doctor explained my response was ‘severe,’ showing a large plummet in pulse pressure leading to blacking out. His graph showed how my blood pressure continuously tried to return to normal, but instead it looked like the path of a zipper to me, with dips and small increases as it struggled and failed. That pattern, he explains is often seen in patients with hypermobility of the joints. And so it follows, the running theory is it must be a result of fragile arteries and blood vessels.

I am assuming most people on this blog are familiar with POTS, but you can learn more at Dysautonomia International in case you are new to this discussion. It is Dysautonomia Awareness Month after all!

So, last year, I became very incapacitated by things sometime around the end of September. I’ve heard this is actually a common phenomenon in dysautonomia patients. And, this year, after a summer of my blood pressure and heart rate being manageable, and my digestion actually working as much as I am used to, I began to think last autumn and winter were an anomaly.

Well, either my recent adventures into working part-time at a coffee shop have spurred another flare-up, or October truly is a difficult month. It is perplexing and bizarre. What is different about autumn for us? Is this specific to certain regions?

Again, I find myself struggling with sudden blood pressure drops and heart rate spikes and now… blood pressure spikes as well. My gut has been slowing down, and I am incredibly nauseated at times.

Despite it all, I feel like I am able to handle it a lot better. I hate taking salt tablets, but I have begun to take them at work to lower my heart rate quickly before it gets out of control. But, it’s not working as well as I thought it would. I am not eating so great, but I am continuing to exercise every. good. day. I have. I am finding it is necessary to keep me stronger during the bad times.

Which brings me to a an understanding I have based only on my personal experiences that conditioning does matter. If your illness has not progressed to the point where you are not able to exercise or stay active, talk to your doctor about gentle exercises. In fact, there is protocol for POTS patients that talks about Postural Training- standing in one spot for x amount of minutes per day.

I found a Pilates routine on Amazon Prime I do several times per week almost completely horizontal on the ground. Swimming is also wonderful, and it is recommended by my doctor. It is difficult for me to stay on top of it when so exhausted, but I find that it is more difficult to manage the dysautonomia with less conditioning. And, I do see a difference between last year and this spring when I started my exercise routine while still very symptomatic . Maybe it will take me longer than other people to get stronger, but I will.

It took me years to figure out how to get to this point where I schedule being active and have established a schedule at my new job with accommodations and limited hours. It’s challenging, but I won’t know until I give it a good go what I am capable of. I have big dreams, and I dream of going back to school for my PhD or traveling and exploring the world. Of having the energy and mental focus to try and publish my poems. Any of these things, maybe all of them.

I do believe we all have this strength within us to make it through the worst of times. We’ve done it before, and we will do it again. Hopefully, with more tools at our disposal and support from our inner circle of people each time we go around the dizzying wheel of dysautonomia.

 

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15 thoughts on “Dysautonomia in Autumn

  1. Hi Stephanie, I’m new to the Dysautonomia world. I was diagnosed about 6 months ago. I was diagnosed with everything else first; Gastroparesis, Interstitial Cystitis and 28 other diagnoses. My neurologist is looking for a good cardiologist for me to be tested for POTS, but I’ve fainted more than once. When I stand, my blood pressure drops and my heart rate goes up, usually………….but with Dysautonomia I never know what it’s going to do and when, but I have all the classic symptoms of POTS, too…………..I look forward to following your blog and learning more about this disease. Take care.:)

    1. Hi! It is a struggle trying to figure out these things. The reality is POTS is a syndrome, so sometimes the cause isn’t known, but a discerning doctor can rule out more serious causes such as MS or a heart condition. The condition itself can be debilitating regardles the underlying cause.

      I’ll share my biggest trial when first diagnosed since you are in that boat… for me it was learning to trust my heart was okay and to be at peace with not necessarily knowing the cause of sudden swings in heart rate or blood pressure. I may know one day, and I am monitored for both possible MS and an autoimmune connective tissue disease despite my current diagnosis of Ehlers-Danlos Syndrome. The best thing I found for peace of mind was to have several specialists you trust who will know your history over time. And truly be able to leave it to them while still remaining an advocate for yourself and informed.

      That way, if one day they find it’s something else causing the dysautonomia, then they can treat sooner. In the meantime, I don’t worry about all of it and live as fully as I can. It could be an unknown cause; sometimes the body gets a little haywire from a sudden virus or exposure.

      Dysautonomia is crazy, and it certainly isn’t as simple as having POTS exactly as described. My doctor explained to me once that POTS is more descriptive than the end-all diagnosis for some. It’s the code they enter, but a more accurate diagnosis is simply functional dysautonomia. ‘Functional’, because in my case he believes my blood vessels do not constrict well. The other category, I believe, is autonomic neuropathy.

      I hear you; these symptoms swing all over the place. 🙂

      I do hope more funding is put into research, so these conditions of the autonomic nervous system can be better understood!

      1. Thank you for this valuable information for a newbie to the Dysautonomia club. My Neurologist insist’s my hear is fine. He did do every test, pretty much, when I was hospitalized after fainting this last time. My EKG has been abnormal for years, but it’s okay they say. It’s probably from the Dysautonomia. I did express my concern to him about my heart because of the blood pressure and heart rate fluctuations. He very kindly explained that my heart is fine. He had an echo of my heart done, all cardiac enzymes checked….He did so many tests I can’t even remember them all and a boat load of lab work. He did an EEG of my brain. He had a carotid doppler study done. It all checked out fine. He explained it’s the Dysautonomia causing the blood pressure and heart rate problems, just like the Gastroparesis and everything else I have. So, it is comforting to know my ticker and brain are okay even when everything else is not. I do know my blood vessels are not good. They are small, squishy and whatever other words they’ve been called by medical professionals.
        I’m with you. I sure hope more funding becomes available for this disease/condition that many don’t know much about, even though it’s pretty common from what I understand. It’s just misdiagnosed so much. It took me years and years to get the diagnosis, but it does make perfect sense with everything I have going on or not going on in this very sick body.
        I thank you so much for your explanation and knowledge of this and for taking the time to give me this information.
        Hope your day was a good one! Take care.
        Peace out! 🙂

  2. What’s the Hulu program you exercise to? I’m an EDSer with a lot of dysautonomic issues, and I just had to leave the PT I was trying because it was zapping too much energy. I’ll be starting craniosacral work instead and need something to keep “active” while I’m mostly bedridden.

    1. The Gymbox with Shelly Rudd, Mat Pilates Beginner… actually on Amazon Prime when I went to check with you! I hope this is helpful to you. If you try it, go very slowly and don’t expect to look like the lady when she does it. When I started, everything I did was slow, and I just made sure my form was right. That was enough to build a little muscle to slowly get better.

  3. I have Ehlers Danlos too, the classic one, and a lot of problems with my digestion (mainly in Autumm) I don’t know if I have POTS because of this lack of awareness of the doctors 😦
    The thing is that you are right, exercise is very important, and some day you can do more, and someday less, but try not to stop.
    Just another advise, when you start to feel the dysautonomia “attack”, try to control your breath. I’ve seen people that reduce the effects of the dysautonomia just with controling the breath.
    Greetings from Spain,
    Marga

    1. Thank you Marga! I will try to remember the breathing advice. Interesting, when I was doing more yoga, I used to be able to get my heart rate much lower for a short time with the measured breathing used in yoga. Sound advice. Love it.

      I was not tested for classical form, though I’ve wondered with the symptoms, especially the stomach dismobility. My skin is not overly stretchy though…just the doughy-soft kind according to my geneticist.

      Thanks so much and greetings back.

  4. my pots always gets worse in the fall/winter too! My doctors say it’s because of the lack of sunlight (vitamin D) and the fresh foods. You might want to ask your doctor about testing your vitamin d level! Keep fighting 🙂

    1. Interesting! My vitamin D is low and has always been, even when I lived in Florida. I’ve wondered if it’s because we have poor digestion at times leading to malabsorption of fat-soluble vitamins? I am taking a D3 supplement every night but it’s difficult to get up. It’s hanging around 18.

  5. You mention mold reactions. There is another group of people who have no antibodies to mold….I’m one of them. I also have Ehler Danlos, POTS, etc. You may want to check out Dr. Ritchie Shoemaker….http://www.survivingmold.com/ There is an actual blood test to see if you have the serious mold problem.
    Hope you find this helpful, if not feel free to delete. All the Best, Cathy

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