Medical Mystery, Hormones, ADHD meds?

[AfabulousMess]

*Just some background info, good to know before reading this. I was bit by a tick in August- was latched and never was tested initially for lyme. I started methylphenidate in September for combination ADHD. I started taking propanalol in small doses in october for anxiety right before a family trip, and quit it during trip due to uncertainty of whether or not it was causing my dizziness while on vacay. I have elevated ANA titers that have been under observation over past three years but with no connected disorders. I recently gave birth to my son in June, which was a pretty crazy labor experience due to PROM and rapid effacement. I started hormonal balancing supplements in november*

In october i landed in the hospital after having what i could only describe as pre-syncopal episodes. My head control would diminish and bobble, my eyes would start rolling , my body would slump and I would feel stuck without ability to talk or move for short bursts of time. I would feel sensations of chest pressure, heart pounding, lightheadedness, instability, incoordination, and extreme confusion around these “episodes”. I just returned from a family vacation via flight one day before this. I had weird conveyor belt/ being on a boat sensations during the trip on and off, but nothing crazy. I would also drop things lot. At home I actually fell while doing dishes- a very controlled slow fall. I retained consciousness but deal with almost a bodily paralysis, where my muscles feel weak and heavy. This prompted me to urgent care who referred me to emergency. I was dealing with these episodes for about a two week period. My husband stood home from work. Then they just went away and left me a depressed/anxious/ fatigued person. Suddenly they are returning. Ive fallen over three times in one week, i just want to sleep, and my hands drop things all the time.

I have had a ridiculous amount of tests done with no answers. We have only deduced certain things from the equation like epileptic seizure activity, cardio dysrhythmia, aneurysm, rheumatic issue, covid. The top contenders are ms, lyme, narcolepsy or stress/ anxiety pseudoseizures. I am in workup still. So many of my tests are coming back normal so the likelihood of any diagnosis seems a distant notion. The sudden on/ off propanalol was a top suspect, but it was then dismissed as the symptoms seems to persist regardless of taking it or not. The stimulant meds were not considered the reason because why didnt these symptoms start earlier when i initially began them. Ms is a big consideration, but MRI’s did not show any major lesions. Lyme test 1 came equivocal, 2 came back negative but pcp says test is not very accurate, much more extensive type would be better.

Does anyone have a clue what is going on or experienced anything similar? How does one with ADHD differentiate what symptoms are coming from what?

[Gettingittogether]

google "medical mysteries" and "the washington post" ... it's a column that appears regularly recounting the struggle of people with conditions like yours ... not your exact symptoms ... but but symptoms that doctors can't tie to a condition or syndrome or particular illness.

I'd say read through those stories ... you'll see that you're not alone in being unwell and getting told by doctor after doctor "this didn't show up on the X test."

And you'll probably notice some things in how the condition got resolved ... usually it's not the initial provider ... it's a much later provider who sees something that that the other doctors didn't ... I mean sometimes it seems really subtle ... the perspective of the doctor who correctly diagnoses the problem is just slightly different than the others .... unfortunately as I recall, it can take several years of running through second and third opinions before people find help ... hang in there. my heart goes out to you.

"medical mysteries" in the washington post .... btw: the post recently had an annual subscription for $9.99 ... be more than worth it for you .. .also the new york times has a column called "diagnosis" that covers the same territory (different cases) as the washington post series ... I think these kinds of pieces will be your sanity.

Good luck! ...

[Redpanda5]

The previous poster had really good advice. All I will add is to find a doctor who specializes in Lyme. I have had odd symptoms of illnesses my entire life - the biggie being unexplained fatigue and brain fog. Blood tests always come back normal but on the low end for thyroid function and anemia. It’s frustrating.

I was bit by a tick as a child while wearing two ponytails in the mountains. A man we were vacationing with spotted it while it was still on my scalp right in my part and pried it off with a knife! It left a bullseye mark that was there for nearly a year. No one tested for Lyme back then.

Lyme can flare up odd health conditions for the rest of your life. I haven’t pursued it but I have heard that your best bet is starting with a doctor who believes in Lyme and has seen lots of patients with it. Why? Because most doctors don’t understand Lyme and therefore dismiss it when unreliable tests come back negative.

The best of luck to you. I’m sorry you’re going through this!

[LifeIsLearning]

I'm so sorry to hear about what you're going though. I would absolutely do more testing on Lymes. I don't know the exact number but a negative Lymes test is shockingly inacurate. The world of Lymes symptoms and diagnosis is a mess. Some doctors don't believe it exists. Many have no idea what to do if it's not caught and treated right away. There are also other illnesses that can come along with Lymes that really are not named or discovered yet. All that to say, it could still not actually be Lymes, but it's absolutely worth doing more testing on that.

[Rainn01]

I’m sorry you’re going through all this and completely understand the search for answers. I’m not sure if this is of any help but prior to being diagnosed with ADHD at 37 I have had M.E./CFS following an EBV infection in 2014 - it’s post viral in a similar way to what’s now known as long covid. I took propranolol in 2014 for thyroiditis but it caused a much lower hr at times. Following an A&E visit after a fainting spell & extremely high heart rate for the rest of the day in 2019 I was referred to a cardiologist and had tests ruling out any structural heart issues & finally had a table tilt test in 2020 which confirmed Dysautonomia. In my case the fainting is being caused by a disregulated nervous system sending mixed signals to my heart, which causes my blood pressure to drop suddenly when I move positions or am standing for short periods of times, causing dizziness due to lack of blood getting pumped back to the brain. It’s not life threatening but can be debilitating and require careful management day to day. Washing dishes always triggered it for me too - a combination of the heat, standing and moving my arms. I now take Ivabradine (prescribed off label) which seems to help the heart rate a bit and since recently starting Methylphenidate the higher blood pressure has really helped with being able to stand more without dizziness. Not sure if this is of use but it may be something to look into. Wishing you all the best and hope you find some answers!

[Hidden]

Thank you for sharing, that sounds like a tough situation as well. I hope from here forward you find as much relief as possible.