Intro; Probable Secondary Dysautonomia

[TWynnB]

Greetings!

Looking around on here, I realize that I truly probably have mild-moderate dysautonomia and possibly POTS, although I am very grateful I am not as severely affected as some of you are. I am hoping I don't progress more to join those unlucky people!

This mess probably actually started last summer - I had started a new job that was pretty intense, but I would get up at 5:30 to go on a 3 mile run. The run would go great - but it would take me 4-6 hours to recover. After a few times of this happening, I stopped running. I didn't go to a doc, because the symptom seemed so vague and non-specific.

In October, I was walking up the stairs, and my legs felt weak - like I had a long run the day before and they were exhausted. Then it happened the next weekend. And then my fingers started tingling, and then my arms were getting weak. My doc found nothing (he should have), but did a ton of bloodwork, and referred me to a rheumatologist. That doc wasn't my BFF (he acted like it was normal aging...), but ordered an EMG, which was normal. I should say, at my GP's appointment on Nov 5, my heart rate was 118, so he ran an EKG. I laughed and told him I just had breakfast and coffee at the best place in town, so probably just caffeine.

My symptoms rapidly progressed, I was dropping things and stumbling. Dr. Google made me think I had primary progressive MS. My doc got the MRI, which was done on Dec 2. On Dec 3, he called me and told me I had severe cervical spinal cord compression with cervical myelopathy. It was a relief that my diagnosis had a cure! After walking out of work, checking in to an ER, checking out of that hospital for a second opinion (that surgeon wasn't board certified yet), and going to my second opinion, I had surgery on December 8 of last year. I had an ACDF of C3/4, with a corpectomy of C5...so a 3 level cervical fusion. I am nearly 20 years younger than the average patient (I am 43). My surgeon made the comment while checking on me that my heart rate never dropped below 120 during surgery, which is pretty abnormal considering the drugs I was on.

I am 14 weeks out now, and my recovery has been...a trial. I joined a private online group for my profession, for those that have health issues interfering with their job. While mentioning my "little tachycardia problem", never mind some other issues, a colleague said she and I had an awful lot of symptoms in common. So I started researching dysautonomia...and she's right. It explains a lot. Thing is, some symptoms may be cervical myelopathy (which I definitely still have) and some may be dysautonomia.

I still have a spastic gait, and sometime stumble, especially if I'm fatigued. My first three digits on both hands are still numb, left > right. Both upper arms burn, and get much worse with exertion. I have crazy patellar reflexes, and my clonus response goes on forever as well if I am tired. My feet and calves get very cold - which I learned after being at a 2 day meeting this week - is much worse if I sit in a normal chair all day. I am normally a stress eater and a foodie, and I've lost 14 lbs (about 10% of my body weight) because I'm nauseous or just don't want to eat half the time. I also get full quickly when I do decide to eat. I have a hard time sleeping at night despite my fatigue, especially if I don't take my pain meds. My heart rate in the morning tends to hang at 110-140, which causes me to fatigue pretty easily. My heart rate tends to hang at 85-95 in the afternoon/evenings, it used to be 60-70. I did do the "poor man's TTT" that my friend recommended, and my HR went from 98 to 139. I was honestly surprised, I didn't expect that. By the end I was trying to catch my breath. Luckily, my blood pressure stays fairly constant and I am rarely dizzy. Oh - and now I'm getting hand/arm tremors while working, which is very difficult to deal with. This is new in the past month.

I did see my GP yesterday and discussed dysautonomia and POTS, and he is very open to the idea (thank goodness). On the recommendation of my surgeon and my GP with my tachycardia and tremors, I'm going to try atenolol tomorrow and see how I handle it. I hope it helps me, work has been really difficult with those pesky tremors, which gets much worse if I get an adrenaline rush. I was supposed to start FT work next week, and I am just now moving up to half time work now. I'm not sure when I'll be able to handle FT work again. I also have a referral to a neurologist, but can't get in until May.

Thanks for letting me browse and learn! You seem like a great community! (oh my, this was a long post!!)

[Katybug]

Welcomed! Sorry you have a need for us! Sounds like you have a good plan going! Let us know how it goes!!

[dancer65]

Hi sorry to hear of your health problems I hope you get some answers at your appointments. Good luck!

[corina]

Welcome to our forums TWynnB!

[TWynnB]

Thanks for the warm welcome

I am happy to say that the atenolol brought my heart rate down to 70-100, without doing much to my blood pressure! At least it takes care of a *little* bit of my fatigue. I think I'm going to let my body adjust to this, and assuming my legs and arms are still spastic, ask to see if baclofen is appropriate for my spasms (my surgeon did recommend it).

I've enjoyed poking around here and learning a bit. Well, maybe "enjoyed" isn't the best term!

[SarahA33]

Hi TynnB,

Sorry I'm a little late to respond to your post, just wanted to welcome you to the forum! I read that you have an upcoming appointment with a neurologist, hopefully you'll get some answers to your questions regarding the pots and dysautonomia. Best of luck to you with all of that!

Good news that the atenolol is working well for your heart rate. Has it helped the tremors at all? I have the same problem , its been significantly reduced by blocking the adrenaline/epinephrine surges with the use of beta blockers (propranolol) and Ativan (Benzodiazepine). Just a quick question, has your thyroid function been checked recently? Hope everything is going well for you!

Sarah

[TWynnB]

Yes, my thyroid function was checked last month, thanks for asking.

The atenolol has helped probably75% with my hand tremors, which is great for my job. It has also helped significantly with the adrenaline surges, which I'm really happy with as well. I also started the baclofen last week, and although my legs are very fatigued and my gait is whacked, they are much more comfortable. My personal life has been turned upside in the last week which has made me ... worn. I imagine that's not helping with my fatigue. The Ativan would be nice to use (they had me on it post op), but as my co-manager said, I "looked like a grumpy cat". My night time dose would have me gorked about 20 hours later. So, I don't take that. I probably don't need to anyway with the baclofen.

I'm meeting with my boss as well tomorrow (she's from out of town, I expected to talk on the phone...now I'm even more nervous!) to let her know my increase in hours isn't working. I worked last tues PM, to go from m/w/f mornings, to adding tu pm in, and my legs have been pretty bad since. I'm not too worried of my position because there's no one to take my place, but I'm still nervous.

[Sunshinegirl]

Ok. I got the gist. My first 3 fingers would not move for nearly a year. I strectch PEC minors and it made a HUGE difference. Heart rate is way up despite stabilizing BP for most of the day. Also degenerative disc disease in my whole C spine. Not far from your age...weirdly similar with the injury component.

Can we compare info?

Ill check back soon.

[TWynnB]

Sure, if you'd like to. It's quite fascinating from a nerd standpoint, would be more so if it wasn't me. Feel free to post here or send a message.