I have a long history of PCS. For the past few months my symptoms have been relatively under control. I was having occasional headache flairs and nearly constant brain fog as my 2 main symptoms.

Recently however, I have had an onset of new-ish symptoms which have now persisted for more than a week and have been quite debilitating. The main symptoms is a sense of disequilibrium/dizziness where I am constantly feeling woozy and off balance. This is NOT vertigo or lightheadedness. It is a very uncomfortable feeling in my brain which I find very difficult to describe. It is almost like I am on a boat/ everything around me is always slightly off balance/off center and my own body doesnt feel fully in balance. It also makes me feel slightly nauseous, especially when I move around too much (ex. looking around and moving my head a lot or when driving in the car). But I even feel this slight nauseous/sick feeling just from sitting sometimes. This symptoms has also caused a lot more debilitating brain fog as the combination of dizziness and brain fog makes it almost impossible to concentrate on any work.
I have also been having new onset of tinnitus, which is something I have never had before. These symptoms are present 24/7 with relatively constant intensity. From the moment I wake up I can already feel the symptoms when my eyes are closed in bed to the moment I go to sleep.

I am trying to pinpoint what could have caused these symptoms.

At first I thought it might be a symptom flair up because I went on a short roadtrip in the days before the symptoms started. We drove 12 hours over 3 days. I was sitting in the back of the car and there were a few dips or bumps in the road which jostled my neck. They caused some anxiety but I got over the stress quite fast as they were not severe jolts and I told myself that these were jolts that I should be able to tolerate as they definitely would not have caused stress before my PCS journey. I was also doing my best to brace my neck for these jolts when in the car as I could see them coming. The symptoms started 2 days after the roadtrip.

I have also just started topical 5% minoxidil, which is a foam that you spread over your scalp 1x daily to treat hair loss. It is a vasodilator and a blood pressure lowering medication when taken in its oral form. However, in the topical form, only 1% is supposedly absorbed into the bloodstream and it is not supposed to cause a lot of systemic side effects. I had been using the minoxidil for 5 days when these symptoms started. After realizing there might be a link, I stopped the minoxidil for 3 days but felt no improvement in my symptoms. I have now been using the minoxidil again for 2 days and am feeling worse:/ I called my dermatologist about this and she assured me that the minoxidil is topical so it should not be causing these side effects. However, I have seen on reddit (r/MinoxidilSideEffects) that quite a few people have developed side effects to topical minoxidil such as fatigue, rapid heart rate/heart palpitations, and tinnitus. I realize though that these people are not the majority and that most people tolerate minoxidil very well.

Apologies for the long post, but I am really at a loss on what is causing these sudden very intense symptoms as neither the minoxidil nor the roadtrip seem like they would be sufficient to trigger these symptoms. I am a bit desperate for a solution as I am truly feeling horrible due to these symptoms.

Do the folks on Reddit discuss how to clear minoxidil from the system? Does it get metabolized by the liver using a certain enzyme that you might be lacking?

I tend not to trust the medical community because it can take several years for information to get discovered, studied, validated and then distributed to clinicians. Besides, even then, the studies will hand-pick subjects and disregard outlining data, so it applies to a healthy population, and probably mostly to males, considering this product is meant to treat a certain pattern of baldness.

I found online that it takes 4 days for 95% of the minoxidil in your system to be cleared.

I quit the minoxidil since 5 days now. The really horrible dizzy feeling started to fade on day 4. I am still having some dizziness though, but it is slightly less severe and more similar to the PCS symptoms I am used to having. I am still more dizzy now than I was before starting the minoxidil.

Based on this experience, I would honestly never want to touch minoxidil again. But I have been dealing with hair loss for a while now and it honestly causes me a lot of anxiety and makes me really upset. Minoxidil is one of the only proven effective hair loss treatments for women and being able to get my hair loss under control would be really beneficial for my mental health.

At the same time though, I am already having trouble managing my PCS symptoms as it is and the last thing I want is to take something that could be making them worse.
The problem with minoxidil is that when you start taking it you need to take it for life if you want to maintain the benefits for your hair. Once you stop taking it, all the new hair you grew falls out. It scares me to commit to this medication when I am not sure if it caused my side effects and when I am also not sure if it will cause more side effects down the line with long-term use.

I know most people here are probably not familiar with minoxidil, but: does it sound like the minoxidil could have triggered my symptoms? Is it a bad idea to try taking minoxidil one more time to see how my body reacts (possibly a lower dose)?





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Evidence FOR minoxidil causing my symptoms
-I had very little dizziness before starting the minoxidil, dizziness is back now in full swing.
-I really felt horrible while on the minoxidil. Dizzy, brain fog, nausea. I even had some moments where it felt like I was dissociating/would have a "mini blackout" while I was in the middle of a conversation with somebody which has never happened before and was really strange.


Evidence AGAINST minoxidil causing my symptoms
-I did not experience symptoms immediately after applying minoxidil. The onset of my symptoms was 5 days after I first started using it. Also, I never noticed more symptoms right after applying it, even though the amount in my blood should be highest at that moment and that is when the worst symptoms are typically experienced.
-I stopped the minoxidil 5 days ago and am still not feeling better. I would expect that once the medication left my system, I would be back to baseline, especially since I did not use it for very long. At the same time I also worry the minoxidil may have triggered/re-activated some underlying mechanism causing my dizziness (ex, to do with BP) and that now that the dizziness has been triggered, it will remain even after the trigger has been removed.
-My PCS symptoms flare up sometimes so the timing could have been completely coincidental. Usually a flare up is triggered by some sort of head bump or incident which causes me anxiety though, and I did not such an incident recently.
-The symptoms I experienced are not at all typical minoxidil side effects. They also do not really make a lot of sense considering the mechanism of action of minoxidil because (1) I was using it topically so it would have barely been in my system anyway and (2) minoxidil has been reported to cause effects such as headache, lightheadedness, fatigue, and heart palpitations - none of which I experienced.

A possible mechanism I can think of is blood pressure. I already have quite low blood pressure, so maybe the slight decrease in blood pressure from the minoxidil pushed it over the edge and made me symptomatic.

does it sound like the minoxidil could have triggered my symptoms?

Yes.


Is it a bad idea to try taking minoxidil one more time to see how my body reacts (possibly a lower dose)?

Yes.

Frankly, this is miserable, and I feel for you, I'm going through something rotten right now due to my own PCS. I can't go to an engagement party of a very close friend of mine 1 block from me because of this. I don't want this to happen to you.

So let's put the important things in order here. If you have an out of control PCS, let's get that under control first. Then we can worry about the next problem of the hair loss, which frankly sucks, but is not quite as bad as the PCS which I assure you can completely ruin your life.

Do you have a good neurologist that you work with for the PCS?