35/M - Unexplained attacks of confusion, tingly hands, twitchy feet, heaviness in back of head.

Greetings.

I've been struggling with a particular set of symptoms for 15 years. I've been to many doctors and had many tests so consider this a shot in the dark, but I'm desperate for some relief as it has been worse as of late and is significantly impacting my ability to work and live.

The upshot is that I am a 35 year old white male and I occasionally suffer from acute and sudden attacks, lasting anywhere from 20 minutes to two hours of the following symptoms:

• A heaviness in the back of the head, often associated with a pounding sensation, but never painful. It feels like a band of heaviness just under the notch in the back of the skull, parallel with the ground. This is sometimes accompanied by another band of heaviness/pounding/pulsating across the top of the head, almost from ear to ear. It feels like a "stereo" effect, as if the left and right sides were equally pressured and thus causing it to feel more centralized. Sometimes I feel a sharp but not especially high on the pain scale pain on the left back side of my head (occasionally accompanied by a parallel pain on the other side but not always). This pain usually hits in brief stabs and then abates and usually exists about an inch higher than the band of pressure. The back of head pressure is actually a near constant symptom that exists to some degree at all hours but is worse during these attacks.
• Confusion. I become suddenly unable to concentrate on simple tasks. When this is especially bad focusing on even the simplest task (walking) is challenging.
• Twitchiness in both feet. It's not like an eye twitch where it just happens and you can't do anything about it. It's more like a nervous tick. If I concentrate really hard I can more or less stop them from twitching but shifting focus means the twitching comes right back.
• Tingling feeling in the hands. Like tiny needles poking me.
• Flushness/kind of numb/tingly feeling in face, often on one side of the face.
• An uncomfortable body tightness/tension. Like I just want to curl up into a ball.
• Shrinkage of the penis. It's as if I just came out of a cold shower/bath down there, but of course I'm just laying in bed or whatever. This is a very consistent symptom which will return to normal somewhat quickly after the attack.
• Occasionally a chill and desire to be covered in blankets.
• Sometimes an acrid, metallic taste in the back of my mouth.
• When really bad, it feels like by body/brain is completely breaking down. Difficult to control limbs. So confused that it feels like I'm about to lose consciousness - although I never have.

Interestingly, my heart rate only rises 10-20 BPM during these attacks, nor do I get sweaty or clammy. I don't get especially lightheaded either.

What helps in the moment, although I acknowledge some of this could be placebo:

• #1: Heat. Applying a heated pad to my head, taking a hot shower, diving in a hot car on a summer's day all seem to help end the attack prematurely. This is my most effective tool in fighting these.
• Movement such as jumping jacks, running cardio, although not nearly as effective as heat.
• Increasing blood flow to the head by raising my legs while laying down or having my head sit off the side of the bed below my body.

Triggers:

These attacks have historically happened only after binging on alcohol, during the comedown period, say 12-18 hours after the last drink and only if I indulged on say, a college frat party amount of alcohol, to the point of being "sh*tfaced" or blacking out. In fact, the very first one was the day after my 21st birthday around 6 PM when naturally, I got really drunk.

More recently other "withdrawals" have triggered them as well. Starting about a year and half ago, I suddenly and overnight could no longer drink caffeine without triggering these attacks to some degree, even small amounts found in soda and chocolate - this despite having been a 1-3 cups of coffee a day drinker for about five years up to that point.

I also recently had a surgery of my nasal passages requiring a course of prednisone and the slow withdrawal from that (tapered off per doctor's orders) was enough to cause some pretty nasty attacks.

More recently still, I had a rough couple weeks after my second Moderna COVID shot and am wondering if there is a connection there.

Long story short, it appears I am now sensitive to quite a few things but I cannot pinpoint what exactly.

Attempts to diagnose:

I've been to countless doctors and specialists. Neurologists who have had me get both CT Scans and MRIs of my brain and neck with nothing found. A sleep study came back inconclusive. Multiple ENTs, who found a significant case of chronic sinusitis, but had no opinion on these particular symptoms. Have been prescribed antibiotics and antidepressants with no significant effect.

I've gone to the ER when especially bad on occasion. Typically, symptoms abate by the time I get there, especially because due to the fact that I am conscious and somewhat aware, I have to wait longer than I would otherwise.

I've had bloodwork done many times which has never shown anything out of the ordinary. I just had extensive bloodwork done last week and the only thing that came back as unusual was a low White Blood Cell count (4.6 x10ˆ9/L where the range is 4.8 - 10.8), and my hemoglobin count was also a little below the lower limit. A more recent run of bloodwork showed similar levels here.

I've also had a hospital run an ECG which came back mostly normal save for "possible left atrial enlargement", which is scary, but I'm waiting for a follow up with a cardiologist to get more information. In the last two months, I have been experiencing frequent heart palpitations, my heart skipping a beat specifically. This happens mostly in the late afternoon / evening, and I might have anywhere from 10 to 60 skipped beats in a single day/night.

A recent EEG showed nothing out of the ordinary.

The most common thought among these doctors has either been anxiety/depression or atypical migraines. I do have social anxiety but these attacks are not accompanied by a rise in heart rate, and are so easily triggered at will with certain substances and tend to last significantly longer. I've also had what I consider to be panic attacks during traumatic times in my life and it was a totally different beast. As far as migraines, I suppose the atypical bit means something, but these attacks are never painful, and I've not once ever had the ocular phenomena often associated. I've tried Verapamil and Nortriptyline in the past, which did not fix the constant head pressure. I was not experiencing the attacks at that time so it's hard to say if they helped there.

My history:

As you can likely gather from the above, I have a history of alcohol usage. The college instinct to drink until drunk was never kicked and as a result, I've developed a habit drinking anywhere from 4-10 beers a night, as many as 5 times per week. I've put in short stints of sobriety before (30 days twice and 45 days once) to see the effect and while the attacks were severely stinted, the persistent head pressure never went away. I am now 37 days into sobriety and plan on continuing indefinitely. I have some casual marijuana usage in the last three years but zero hard drug use. I am in decent shape, currently 180 lbs and 5'11", with 15 lbs of that COVID weight I hope to lose soon. I run and bike a lot, and consider myself in pretty strong cardiovascular shape.

If you've made it this far, thank you thank you thank you. Would love to hear if anyone else has a similar experience or if any doctors who might be reading this could offer some insight. Happy to answer any questions that might shed additional light on this situation.

Thanks!

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