Maybe POTS?

[beastwiththeleast]

Hello! This is my very first post on this forum. You all look to be a lovely community and I'm elated to try and become a part of it.  Please bear with me and my tendency to waffle.

I was born the year this forum was started and I'm currently undertaking my first of two years of an extended high-school senior study program. In November, I get to celebrate the second anniversary of a ~mysterious illness~ that tailgated the worst two-week bout of the cold I had ever experienced in my life. 

I'm not even entirely sure if I belong on this forum - but it started with feeling sick, like the flu, then sicker still. I used to get infrequent headaches, but they became daily - headaches became migraines, and those crept to a near-daily occurrence, too. I would sleep for over ten hours and woke up feeling exhausted. I felt my memory running away from me, words and my comprehension of them gradually melting into an incomprehensible sludge. I'd feel hot and cold and sweat and freeze at the same time. I'm covered in a brown rash, and one side of my body swells now and then. (There's more, but I won't bore you with it!) And still, I trudged through it, thinking it was just a really, really nasty cold.

Now, two years later, I've developed a pretty violent depression which catches the blame for the rest of my symptoms (naturally, I detest this - the depression is a result of the symptoms, not the cause!). Among this, I've made friends with tentative diagnoses, such as POTS, pseudodementia (yikes!), chronic fatigue/fibromyalgia, etcetera. They've looked at every angle of my brain and it is - unsurprisingly - unremarkable. All dead ends. I'm truly, honestly desperate.

I used to be a smart kid, sharp memory, sharper wit, what-have-you. Today, I'm called an attention-seeking freak, a self-saboteur. I feel like my life is running away from me and every day is worse than the last.  I am as lost as I feel awful. I hope that you can find the compassion to tell me your experiences or what you think of all of this. Right now, I'm on two medications (agomelatine, amitryptiline) that I feel haven't helped (or have even exacerbated) my situation. 

Thank you for taking the time to read. I really appreciate having this outlet. Take care.

[MomtoGiuliana]

So sorry you have had such a difficult time with unexplained symptoms. 

Was the POTS diagnosis based on a tilt table test?

POTS can cause many symptoms and can be very disabling.  The good news is that many with POTS do improve over time.

What specialists are you seeing?

[Hyperax]

Funny thing is I found this forum looking up *really* similar symptoms to yours. Been desperately searching for a solution as my word/memory recall is quickly vanishing along with ability to sleep (mostly cause of daily migraines) Is this thing we're suffering from POTS? If it is, how can we tell? But, at the least, you arent alone in both the confusion and uncertainty and this h*** of a symptom list.

Not sure if its helpful but somehow massaging my lower legs from ankle to knee helps calm it down sometimes, especially after standing for a while.

[beastwiththeleast]

Thank you both for your responses!

I never received a tilt table test. Instead, the doctor thought only to test my standing and sitting/lying down blood pressure; and, if I wasn't fainting upon standing, it probably wasn't POTS. I am unfamiliar with the criteria otherwise.
I have (thus far) seen a nutritionist/dietitian, ENT specialist, sleep specialist (with regards to suspected sleep apnea), psychiatrists, psychologists, two physiologists, etcetera. The others escape me. I have seen at least 5 general practitioners. We never saw a neurologist because (a) we couldn't afford it, and (b) our doctor said it was highly unlikely to be fruitful since my symptoms are too psychosomatic.

And welcome to the forum Hyperax - I found it the same way! I'm really sorry to hear you have been struggling with what sounds to be the same deal. It makes getting by each day so taxing. I'll absolutely keep your advice in mind; I only wish I had some to exchange to you in return.

There are a lot of symptoms I didn't mention in my initial post because they're so scattered and weird, but I'm beginning to suspect there are more connections than I thought. If it's of any interest, here are some of them:

• I had my first (and only) seizure(?) at the start of this year. (I had been in a reasonably warm room, standing upright for no more than ten minutes. Reportedly, no loss of muscle tone but convulsions for less than a minute.) We went home and saw our GP a week later. It wasn't followed up because she suspected I had been lying or had just fainted (despite me having no idea what happened; it was my mother who reported it. I only recall waking up on the floor). 
• I can't stand and laugh very hard at the same time. I sort of... collapse? (I don't pass out, my legs just give.)
• Sometimes it feels like my thoughts are going in slow motion. Thinking at one word per 3 seconds - this ... is ... kind ... of ... how ... it ... sounds. I despise it when it happens.
• What you would expect with regular migraines; tinnitus, occasional hallucinations (auditory, visual).
• Every time I go to bed (and sometimes during the day), I hear my heart beating through my ears. It's relentless, no matter how hard I try to block it out - migraine or no migraine. (note: I have had an ECG and an echocardiogram).
• Something sort of new: these little loops of hair that are either totally under my skin, or pop out of the skin and re-enter it. (Circle hairs?) They're on my arms and legs and they drive me nuts. I pick them out of my skin a lot, but they never seem to go away.

I don't know if these are totally irrelevant or not. Has anyone experienced any of the above in conjunction with their symptoms?

[Pistol]

@beastwiththeleast - I have experienced some of your symptoms. I have Hyperadrenergic POTS ( a type that is characterized by too much adrenaline ) and take seizures and pass out, both. In my case if the blood vessels constrict too fast there is not circulation to the brain and I seize ( medically proven to be the cause of my seizures, vs epilepsy ). You can also faint and have seizure-like movements, that is called convulsive syncope. 

You mention that you cannot stand and laugh at the same time - this could be a dysautonomia symptom. Laughing can stimulate the ANS, and so can the act of standing up. Laughing hard can have the sane effect as blowing up a balloon - and many people have fainted doing that!

Regarding the slow speech and scrambled thoughts: this can also be caused by loss of circulation to the brain, it happens to me and it is referred to as brain fog. 

I can hear my heart beat in my ears when my BP is high. It is called pulsatile tinnitus. Here is an article explaining it: 

https://www.healthline.com/health/pulsatile-tinnitus#diagnosis

[beastwiththeleast]

Apologies for double-posting, but this one perplexes me the most.
The one symptom that I think has received the most recognition is the swelling. It's more-so that one of my hands swells.

I wanted to give this a bit more consideration in sharing because I think it must be related in some way. My right hand (my writing hand), about six months into the fatigue, began doing something really strange. It would swell to about twice its size and become bright red - the other hand entirely unchanged. 
Since this was so obvious and physical, it received a lot more care than my fatigue; especially since it made writing and drawing (the two things I occupy myself with practically all the time) either excruciating or impossible. Did you know you can get an ultrasound on your hand? I didn't! 
My inflammation markers and ANA (?) test came back inconclusive, and so did the ultrasound. Fortunately, the swelling went away after a week or two.

And then it came back. It stayed for a week, and went away again. The flare-ups weren't consistent with anything. It couldn't be Reynaud's due to the duration, unilateralism, and the circumstances of the symptom. It wasn't RSI - no matter how much I rested, it would show up or go away at random. In the end, my doctors, familiarly, threw up their hands and ignored it. At least it was going away. And coming back. And going away again. And coming back.

To this day, I still get the swelling now and then. Fortunately I've adjusted to writing with what feels like a boxing mitt, but that doesn't make it any less painful or hilarious.  

[Hyperax]

Oh wow. I'm going through the exact same extra stuff you've mentioned. Its so hard to explain to people the mental process slowing down, but its exactly like that. I hope you can find out a way to help it, I was on propranolol and topamax for a little bit for migraines but it feels like its made all the brain fog worse even after stopping both.

Its, a journey, for sure. I hope we can both pull through.