What weird, medically vague symptoms other than your fatigue do you have (pressure, vibrating, etc)

[purrsian]

-Ear canals feal full or swollen and sometime accompanied by a swoosh/crackle sound if I squint my eyes and flex?? my inner ear (my best description, it's hard to explain).

My ears don't necessarily feel swollen, but I get the crackle sound often. Sometimes a dull pop. Especially when I tense my jaw/eyes/head muscles. Doctor thinks it's eustachian tube dysfunction, but gave no reason why I might have that.

I also have tinnitus which varies but is constant, sinus type symptoms (postnasal drip, face discomfort but not usually pain, headaches, full type feeling of head) but CT scan of sinuses was perfect, and pressure type sensations in my head. The 'something on top of my head' type pressure, or inside, like my brain is too big for my skull. My headaches aren't that painful, just this horribly distracting feeling. My jaw also clicks when I eat at times, although I don't get jaw pain like some have mentioned. I used to clench my teeth a lot in my sleep. Gustatory rhinitis is another random symptom, a running nose whenever I eat (hot or cold temperature, spicy or not, just any time I eat). I have POTS and poor circulation, so I very easily get pins and needles or a dead leg/arm depending on how I sit/lie. Also get random small twitches, last week it was in my eye quite a few times which feels a little bit odd!

Would love to read your novel when you finish it, make sure you tell us all on here!

 

[purrsian]

Oh and I forgot to mention I also get the brain shock feeling that a few have mentioned, although I suspect it may be associated with my SSRI. It's the same sensation that I get when I forget my tablet (withdrawal symptom) but now I'm getting it randomly even though I haven't forgotten any. Something to consider if you get the symptom and are on an antidepressant.

 

[Cheesus]

Other: Often I get this sensation of pressure all across my face and teeth as if someone had put a tight mask over my face. If I press on parts of my face where this pressure is, often times it increases.

Checked my teeth and sinuses and all came back normal.

I get this but even worse than you describe. It is my main symptom after the obvious energy problems. It is like my face is constantly writhing. I also get it in the back of my neck, particularly around the atlas vertebra. Something in my head shifted with a large clunk around a year ago and ever since then i have been able to hear the blood in my right ear very loudly as though something is putting pressure on the blood vessel and forcing it through a tiny gap.

My neurologist told me it was happening because i was thinking about it and didn't bother to do any investigation. I was/am pretty angry about how dismissive he can be. I know you all know how i feel.

My theory is that the smooth muscle in the head and particularly the sinuses are constantly expanding and contracting. The only other place i can think of on the body that does something similar is the scrotum. It's like my whole skull is constantly warping and shifting shape. It increases dramatically when i do lymphatic drainage exercises.

 

[the_phscale]

Hi there, sorry to resuscitate this thread so long after the last post.

I have symptoms similar to that mentioned by the original poster- specifically the vibration feeling in the head and face. I had some other MS-indicative symptoms, such as frequent urination, difficulty recalling words and names that I should easily know, and tremors in my hands, so we did an MRI. Everything came back clear, but there have been no other suggestions made about this vibrating, tingly feeling.

Did anyone ever track those symptoms down?

 

[the_phscale]

But the key thing is....
It isn't true, I basically know it isn't true (to the point that I can tell myself this), but I can't dislodge the idea and the train of thought that follows from it. It feels true, even though it isn't.

Hi @worldbackwards , you may have sorted this out by now, but that sounds to me an awful lot like intrusive thoughts characteristic of OCD. I've had OCD since I was a child, far longer than I've had CFS/ME, and I find that I get particular thoughts stuck in my head and then they play over and over on loop. They aren't necessarily distressing or negative, they can be things as simple as a repetition of my own name as though I was introducing myself.

I find that when I get these repetitive thoughts stuck in my head it helps not to try to push them out. Rather, I accept that my brain is anxious because that anxiety kept my ancestors alive a long time ago (when being anxious about trees falling on their houses prompted them to trim the old trees, for example). Letting the anxiety "in", as it were, tends to make the repetitive thoughts stop circling.

 

[Basilico]

Hi there, sorry to resuscitate this thread so long after the last post.

I have symptoms similar to that mentioned by the original poster- specifically the vibration feeling in the head and face. I had some other MS-indicative symptoms, such as frequent urination, difficulty recalling words and names that I should easily know, and tremors in my hands, so we did an MRI. Everything came back clear, but there have been no other suggestions made about this vibrating, tingly feeling.

Did anyone ever track those symptoms down?

Just wanted to throw this out in case it could be of help. I am diagnosed with MS, but it is somewhat atypical (I believe now it would be classified as Benign MS or some other of the weird new forms) in that I have only minor neurological physical symptoms (tingling, vibrating, spasms, pins&needles) once in a while and they are generally mild. Most of my symptoms are in line with common CFS symptoms (there is a lot of overlap).

Recently, I started having a big increase in these vibrating, tingly, pins&needles sensations along with some peripheral neuropathy (pain in my fingers, arms, feet). I was getting nervous that my MS was ramping up. Coincidentally, at around the same time, I had some blood work done and I discovered I was anemic again (something I have been dealing with for about 15 years). I immediately went back to my old Iron Bisglycinate regimen and literally the same day that I started the iron supplementation, these sensations disappeared! I'd never before gotten these types of symptoms when I was anemic in previous years.

I know that most neurological stuff in CFS and ME is idiopathic, but there are a lot of nutrient deficiencies that can cause/worsen these symptoms. Considering many people here have methylation issues, B12 could be one of the culprits. I'm sure there are others (I had no idea iron could be one of them!) It may not help, but it's always good to rule out the easy stuff.