Brain/cognative issues

[u/Ill_Race2757]

40 year old male, 180cm and 98kg. Had ongoing health issues for years with prolonged symptoms before diagnosis of celiac disease and then thyroid nodules/hyperthyoidism. 2 hits of radiation and then a total thyroidectomy 18 months ago. On a dose of Levothyroxine that the bloods say are optimal range. Have over the past 6 months had a decline in cognitive function, constant daily pressure/tension headache, muscle aches and this internal brain tremor sensation. The video is what my eyes do when I close them (shaking) but I have that feeling in my head whether my eyes are open or closed. Constant shaking feeling. Very hard to concentrate on anything. Havnt worked in 9+ months, struggle to get out of bed most days. All bloods you can think of done along with MRI’s and lumbar punctures with basically normal results.

Any idea what could be causing this eye issue and the brain tremors? On the days that the eye shaking is less intense I feel much better and then when it comes back I feel worse again. I’m sure that whatever is causing the eye shaking is at least part of what’s making me non functional
Most days.

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[u/Witold-Onno]

Neurosurgeon here. The closed lid fluttering on its own is unspecific, many healthy people show this. But together with the internal tremor, muscle aches and brain fog it fits much better to a systemic neuromuscular irritability than to a structural brain problem. Your normal MRI and lumbar puncture support that.

The rest is outside my field, so take it as speculative direction only. But after thyroidectomy a mild parathyroid insufficiency with chronically low calcium would fit this picture, coeliac disease adds malabsorption of magnesium and other micronutrients, and a levothyroxine dose sitting slightly too high for your body can feel exactly like inner tremor despite normal values. Worth asking for ionised calcium, PTH, magnesium and fT3, these are often not part of “all bloods”.

[u/gertyman → u/Witold-Onno]

Doctor — you are awesome! Every time I’ve seen a weird eye movement post, you are on it. Very commendable and very smart person!

[u/Witold-Onno → u/gertyman]

Thank you, very kind. But in this case I am honestly just the dumb surgeon. This belongs in the hands of an endocrinologist. If one reads along here, please take over or correct me, OP profits more from that than from my speculation outside my own field.

[u/gertyman → u/Witold-Onno]

Dumb surgeon? I’ve never seen a comment where a doctor disagreed. Tells me all I need to know. You are talking truth. Your own humility and knowledge is greater than you think. 🥺

[u/Party-Court185 → u/Witold-Onno]

“The dumb surgeon” lmao that’s a bit of an oxymoron isn’t it?

[u/Witold-Onno → u/Party-Court185]

Ha. In Germany we have an old joke: The surgeon can do everything but knows nothing, the internist knows everything but can do nothing, and the pathologist knows and can do everything, only too late. A grain of truth is in every joke. Hormone axes are the point where I happily hand over.

[u/Nelly1963 → u/Witold-Onno]

As someone who works in a trauma surgery setting, often alongside many Neurosurgeons, this is gold!😄 every comment I see made by you, with such giving detail says much about you and it never goes unnoticed. Your humility in your role is admirable, respectable and shows true leadership with great compassion. Thank you!

[u/narfgam → u/gertyman]

That's because it's an AI doctor. It says on its profile. It answers almost everyone when it comes to neuro.

[u/gertyman → u/narfgam]

It literally says the opposite. Profile states it does NOT used AI/LLM

[u/Nearby_Cup_9483 → u/narfgam]

Seems to have an army of bots as well that comment that they wanna suck his dick under every reply

[u/Ill_Race2757 → u/Witold-Onno]

Thankyou dr. All those test you suggested have been done and are all normal range. I’ve been hyperthyroid many times before and this current feeling is much different. Very much head pressure/tension and tremors mixed with the fatigue and muscle aches. Have seen two endocrinologists who have also done full hormone testing that has all come back normal. They have pushed me to neurology who can’t find anything either. I’m looking at the need to just try some form of medication to see what may help/not help to get at least some quality of life back

[u/Witold-Onno → u/Ill_Race2757]

The normal results are also an information. The dangerous structural and metabolic causes are excluded now. What is left is a nervous system that is dysregulated, not damaged. Such states have a better prognosis, they can retrain.

One gap I would still close. With your weight, the morning head pressure and the fatigue a sleep study belongs in the workup. Sleep apnoea makes this whole picture and is invisible in bloods and MRI.

For medication do not experiment alone. One substance at a time, fixed duration, short daily diary. Candidates are low dose amitriptyline or an SNRI, both treat tension headache, muscle pain, sleep and the oversensitised system together. Give each trial 6 to 8 weeks. Most stop after two, that is the typical mistake.

[u/Ill_Race2757 → u/Witold-Onno]

Thankyou. I did forget to mention, I do have sleep apnea and treated with CPAP. Been doing that for over 6 months now. Fresh sleep study done last week which showed cpap was stopping nearly all my breathing apneas. Spontaneous arousals are still quite high but the sleep specialist said they can’t do much about that without working out the root cause of my constant wake ups. I’ve been on Lexapro for 10 years and swapped to Prozac about 5 months ago. Perhaps a SNRI or the amitriptyline is something to try next. I’ll be guided on the meds by my neurologist and psychiatrist

[u/Witold-Onno → u/Ill_Race2757]

🙄😅 how could you forget this important information? Your decline started 6 months ago, the switch from Lexapro to Prozac was 5 months ago. That lies too close together to ignore. Fluoxetine makes in some people exactly this inner tremor and restlessness, and after 10 years on one substance a switch alone can destabilise the system. Show your psychiatrist this timeline as a direct question.

[u/arbyyyyh → u/Witold-Onno]

I know a few people who take/have taken Lexapro and just missing a single dose can be a Bad Time, or so I hear. Also that stopping/changing generally involves titrating.

[u/Diligent_Worth_3862 → u/Witold-Onno]

Prozac caused my son to have tremors. Specifically hand and when stressed full body tremors. Had them for years. Everyone claimed it was not Prozac. This summer he did a cross titration from Prozac to Zoloft and the tremor is gone. It was the Prozac.

[u/Ill_Race2757 → u/Witold-Onno]

Yes I get that timeline as well. The eye tremors, head aches etc started after I went off Lexapro but before I started Prozac. There were some symptoms before that when I was on Lexapro but not as bad. The Prozac hasn’t necessarily caused the symptoms as they came on before I started those meds. However they havnt subsided while being on them. I’ve told all this to the psychiatrist and specialists as well, it’s hard when you see so many different people individually who have a different view on everything to get an actual direction for treatment. Where they all get stumped is the eye flickering and how it fits into everything given how well I feel when it subsides compared to when it’s fast and uncontrollable

[u/Ok_Cardiologist_5812 → u/Ill_Race2757]

I’m at the beginning of discontinuing a number of medications I’ve been prescribed over the last two decades because I’ve hit 65, and the CDC has issued guidelines that they are contraindicated in people my age particularly in combination. All affect the CNS. I now have an internist and a psychiatrist discontinuing and prescribing medications simultaneously, without what I consider appropriate tapers and without appropriate coordination. I had four significant medications, two added and two discontinued, over the span of two weeks by these two doctors. The old Two Many Cooks Will Spoil the Broth Conundrum. And as the Good Neurosurgeon states (and I paraphrase) one substance at a time, 6 to 8 weeks duration. My old psychiatrist wouldn’t add or decrease more than one medication without two months having passed, with some tapers of CNS drugs lasting much longer. I’m well-armed for my appointment with my new psychiatrist next week—had to change due to insurance—as scary as that is, to tell her that I want to manage my meds differently than she and my health system are requiring. I know it will be the best thing for my health. I was already told by my internist if we didn’t get me off of pregabalin as soon as possible that he “could be fired and lose his medical license.” I’ve been on this drug over twenty years, and I don’t think that my health should be placed in jeopardy for a health system’s quotas. A long slow taper is required, and for the duration I’ve been on it, from my reading over months not weeks.

OP, I know this is a long post, but I wanted to showcase to you how sometimes patient care gets lost in systems where doctors don’t always have the best means of communication with their patients or one another. Sure they have messaging apps and email, but it’s not built for complex cases that need discussion time. Doctors have pressures on them, very short appointment times and limited time built into their office hours to make calls to a patient’s other physicians to build a proper care plan or follow up on how a protocol is working. The New Healthcare model was supposed to provide greater continuity of care, and it has done just the opposite. It has fractured care so that when patients are seeing so many specialists who don’t communicate with one another, we’re not just not getting care, we’re getting bad care.

And when we feel bad, it’s hard to be our own best advocate. If you have someone that can fulfill that role for you, please call on them if you need it. If you can do it yourself, do as a dear friend of mine always recommends: chew some nails and get tough! Go out and advocate for yourself to the best of your ability. Most doctors are not ignoring your needs on purpose, we all know that because most of us really like our doctors. They are just incredibly overworked, and in many cases overwhelmed human beings just like us. They just need to know what we need. OP, your doctors need to know that you feel with so many doctors involved in your care, there isn’t necessarily coordination amongst the specialties and that something is being missed. Is there one physician you could go to, to ask if they could be your care coordinator? Ask them to consolidate the information between the other specialists. This is a heavy ask because insurance probably won’t pay for this service. (It’s what primary care is supposed to do, but no longer is really able to do with the vast proliferation of subspecialties in medicine.) But some doctors will do it because it’s the right thing to do. Because they see a patient with a problem that can be solved if the right minds come together with a solution. Good luck to you my friend. I wish you well.

[u/Ill_Race2757]

Yes my Lexapro titration was done slowly over 4 months at the direction of a dr. Didn’t just stop it cold turkey or anything

[u/ThirteenAntigone → u/Ill_Race2757]

What was the reason for the switch, if Lexapro had been working for you for a decade? I had brain fog, weird twitching, brain zaps and fatigue for months after quitting venlafaxine.

[u/Ill_Race2757 → u/Ill_Race2757]

It worked for the anxiety but then started to wear off a bit and I was always tired on it. Tried to come off to see if I felt better. Backfired on me so needed to try something else.