Waking up sick daily / Long story please stick with me

Posted by andrewkbmx @andrewkbmx, Sep 15 9:38am

TL/DR Tried a bunch of meds, and found out at the end I have POTS but still no relief.

Last October (2020)I got COVID, was knocked out for a few weeks never hospitalized, but lost of taste and smell, aches and pains, night sweats etc and seemed to give me long covid in my own opinion.

Fast forward to April 2021, I’ve been off antidepressants since January and not feeling so hot so I’ve decided to try them again. We decide to try pristiq 25 mgs as this has worked in the past. First week is constant unnerving anxiety and restlessness, doc suggests I keep taking it to adjust. Second week same thing, until I wake up in the middle of the night shaking.

I’ve had panic attacks my whole life but this is different, my usual guided breathing and hand under cold water isn’t working. My entire body is shaking from head to toe, I can barley walk 911 is dialed but not called. This lasts around 30-40 mins until the small dose of Xanax kicks in and knocks me out. That day I decided to stop the meds due to this.

Spent the next few days trying to adjust to coming off of them which leads to really bad morning anxiety and tremors to the point I end up in the ER. They find nothing and recommend me to speak with my psych again.

We end up trying another med, lamictal. Starting this med did the same thing, woke up in the middle of the night jaw chattering, shivering and tremors. I get up and try to deal with it and fall back asleep. A couple weeks of this med and I decide its not for me either and taper down.

I spend about two weeks clean of all meds to try and reset my system but the morning attacks seem to continue no matter what we do which is something I’ve never dealt with before. The next thing we try is klonopin, a very small dose of .25mg daily, this dose seem to help and keep the attacks or episodes at bay but its a short acting med and I don’t want to get addicted or form a tolerance and I felt like I needed to just keep taking more. I took it for about 6 weeks.

At this point they suggest Seroquel 25mgs. Im Leary to take it because of its med class and my mental status, I’ve never thought I needed an antipsychotic but at this point I’m going crazy with all this. First day isn’t bad, knocked me on my ass and made me sleep but turned me into a zombie. I was advised again this would clear with time and for me it really didn’t, I was so drugged feeling I didn’t even want to leave the house or do anything let alone drive. I spent 6 weeks on this as well and ended up getting off which was very difficult and ruined my sleep.

Okay, to the now. 1 month off everything at this point it feels like my body is attacking itself, I CANNOT get a good nights rest as I wake up nightly shaking and heart racing the second I’m awake along with some issues moving my hands and fingers correctly like when trying to type or text. Knees are very weak and legs shakes, wrists are weak and shaky. Some Jaw chatter and clenching. They did an EMG,EEG,MRI and everything is good. If I try to focus on something or concentrate too hard my neck will shake or tremor its the strangest thing.

Sometimes and hour after I go to sleep sometimes 2 hours and repeat. It’s a hellacious cycle. Other times I can be sitting on the couch trying to relax and almost feel an episode coming, like I’m about to start shaking or have tremors. My body gets real tight and uncomfortable, skin burning, dizzy, short of breath, difficulty swallowing, palpitations, racing heart rate.

Im a big gamer as well, and since this I cannot handle ANY sort of stimulation, playing games drives my body insane and causes shakes and have a hard time coming down after wards. Also working out/walking, or yoga seems to trigger the episodes. These were my only outlets.

Im writing this after another attack, whatever this is it loves to happen at night, I stayed up late around 1 and woke up at 3 and fell back asleep until 5 where I’m woken up out of a deep dream it felt like, heart racing body trembling and shaking, brain is complete fog, very dizzy and sweating, like I’m still sleeping but I’m also awake. Checked my glucose, blood pressure, blood oxygen and everything is fine.

I just don’t know what this is anymore but its taken away my ability to sleep and function normally, a few things I’ve read point towards maybe the SNRI’s triggered my POTS but I just don’t know. I had one doctor suggest a beta blocker which sounds good, but my blood pressure already gets so low sometimes without it. Autoimmune seems to run in the family as well.

If you made it this far I’m thankful and hope someone can relate so I can find a way to relax again.

Hi @andrewkbmx, welcome. I've added your post to the Depression & Anxiety discussion group as well. See here: https://connect.mayoclinic.org/group/depression-anxiety/

I think you might wish to connect with other members who have POTS in this discussion:
– POTS – postural orthostatic tachycardia syndrome https://connect.mayoclinic.org/discussion/pots-postural-orthostatic-tachycardia-syndrome/

You certainly have a number of things going on from POTS to multiple medications to disruptive sleep patterns, as well as possible post-COVID syndrome. Do your doctors coordinate your care? Are you being seen at a large medical facility where they work together?

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@colleenyoung

Hi @andrewkbmx, welcome. I've added your post to the Depression & Anxiety discussion group as well. See here: https://connect.mayoclinic.org/group/depression-anxiety/

I think you might wish to connect with other members who have POTS in this discussion:
– POTS – postural orthostatic tachycardia syndrome https://connect.mayoclinic.org/discussion/pots-postural-orthostatic-tachycardia-syndrome/

You certainly have a number of things going on from POTS to multiple medications to disruptive sleep patterns, as well as possible post-COVID syndrome. Do your doctors coordinate your care? Are you being seen at a large medical facility where they work together?

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I’ve been going through this all since April and I’m my opinion they’re failing me and not listening to my issues anymore. Very irritated with everything that’s going on as my quality of life continues to slip and not being able to work.

I’ve had multiple appointments where the doc asked why I was referred and wasted my time and money without resolve or it’s not their area of expertise. Suffering from mental health issues and then adding on terrible physical ones isn’t a great time.

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@andrewkbmx

I had read this awhile back and some of it may be helpful to you. No one really knows all the long-term side effects of Covid-19.
https://www.ninds.nih.gov/Current-Research/Coronavirus-and-NINDS/nervous-system
I hope you find your answers from someone and feel better soon.

ZeeGee

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@andrewkbmx, are taking any magnesium? A lot of your symptoms are similar to magnesium deficiency and even though that's not the only reason for what's going on, it can definitely make things worse. B vitamins, along with others, are vital for the nervous system to function properly. Infections rapidly deplete vitamins and minerals, and for a lot of them, what you get from diet alone probably isn't going to cut it. Also, genetics and health problems determine how well you absorb and utilize them.

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I wonder if this is a combination of dehydration and autonomic nervous system problems that are causing electrolyte imbalance along with sleep apnea ( are you checking your o2 after you wake or do you test while asleep).

Or
Benign Pituitary Gland Tumor
Or
Parathyroid gland issues

Those are the ideas that seem to come to mind. It sounds like something could be interfering with blood flow and parts of your body are not getting stuff needed. Without knowing a lot more these are my best guesses. I’m not a medical person – (biology research actually) but I’ve spent the last decade trying to solve my own medical mystery. It took me 12 years to give up on most of the Xxx-ologists and see a geneticist where I found out I have Classic Type Ehlers Danlos passed to me from my mother. I never gave up looking and my daughter’s 20 year old babysitter recommended the geneticist (as she has EDS). EDS was one of my guesses for me – but have someone who had found the bed doctor and who encouraged me to see him was key. Had begun thinking I was crazy! In a hurry but wanted t answer – sorry for any typos!

Good luck! Sounds so frustrating!

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Some of my symptoms sound like yours. I had to completely stop all antidepressants or anxiety medications as all of them made things worse with feeling very, very jittery, Trembling, shaky, gaining tons of weight, sleep issues etc etc

I have been on beta blocker. Metaprolol, for 25 years for irregular heartbeat YET I still have daily for two years now, what appears to be autonomic nervous system malfunction. Another person on Mayo blog just told me using metaprolol could cause my nervous system symptoms.

Not sure anymore what to do. Two years of suffering with life altering nightmare regarding these crazy neurological issues yet many tests, x-rays etc are all normal except MRI of neck which showed cervical stenosis with calcification and myelopathy of the neck with narrowing of spinal fluid canals. I am waiting now to finally get the much needed MRIs of my spine and brain. I had an MRI of my brain almost 3 years ago and it was normal. But over the last 3 years things could have happened that did not show up on the first MRI. I've even had cat scans of my adrenal glands in my kidneys looking for adrenal tumors that could be causing this fight or flight adrenaline rush type feelings that I get as well but that cats can show no tumors in my kidneys or adrenals or abdominal. Unless the cat scan of course missed something.
I've even had Paraneoplastic blood workup looking for cancerous tumors in my body that could be spewing out cancer cells which then attack the nervous system yet that blood test came back negative. The HU antibody test and ANA came back negative.

My neurologist in Tampa has not in my opinion done a thorough job. He is not even done a small nerve fiber skin test on me nor has he done any test looking for a Guillain-Barre syndrome or things like that. He is just basically dumped me back off on my primary care doctor, who is not a neurologist, to try to figure all this out and also try to get me a referral to the Mayo clinic in Jacksonville. I've never seen such a disaster within our medical system. It's almost like our medical system is falling into third world status rating. Absolutely horrible.

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I've had terrible morning anxiety for months. Starts at 5am with shivers and weird dreams…Horrible adrenaline rushes. Usually starts to ease off once I'm up and around, but still feel jumpy and exhausted at the same time. My life has been unsettled(cancer surgery, traumatic break up, sold my house and living with daughter until I find another one..)since Feb.,so I guess this is understandable. But I hate waking up with this everyday.

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Sadly Mayo denied my appointment request at this time and there aren’t any specialists in my area. Not sure how to proceed really.

Trying to stay strong.

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I cannot understand Mayo denying an appointment request! Isn’t that Against the Hippocratic oath?

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@andrewkbmx

Sadly Mayo denied my appointment request at this time and there aren’t any specialists in my area. Not sure how to proceed really.

Trying to stay strong.

Jump to this post

Good morning @andrewkbmx Im so sorry to hear that Mayo has denied your request for an appointment. It does happen, though. You say that there are no specialists in your area so you may need to expand your area. Mayo Clinic also partners with some regional hospitals.
Here is a link: https://mayoclinic.org/about-mayo-clinic/care-networks/members
You can also Google “medical centers of excellence.”
Can you try these and let me know what you learn?

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