does anyone have these 2 symptoms

[Really]

hello i have had a terrible condition for 2 years now that has gotten worse over time lots of symptoms like tremors, muscle jerks, pressure in head, seizure like symptoms, face and neck neuropathy type numbness, entire room looks crooked, vertigo, visual and sensory overloard, troubles swallowing, breathing problems and air hunger, burning nerve pain, nerve sensations and electric shocks, chest pain, hallucinations, brain shocks, cold chills, etc the list goes on but you get the point

there are 2 symptoms i want to talk about to see if anyone has this too or knows what it is. the first is a extreme heavy body and head, it seems to come from my head and its like gravity weighs down on my body and makes me extremely heavy, it can be worse at different times and certain things seem to make it worse too. its hard to turn my head to the side or up and down and stuff and when i have the heavyness i cant really even sit in a chair properly. it started as a lightheadedness 2 years ago and just kind of is like this now. during the day it will randomly seem better from moving my head or pressure in my head changing and will go away for an hour or 2 then be heavy again.

computers almost always make it worse even just sitting here for 5 or 10 minutes isint tolerable usually and then the heavyness will be worse after, but i dont know if it can even be a physical problem if computers make it worse? even if i take my phone and plug it into the wall and stand there for 5 minutes often i will start to get more heavy even if i dont really look at the cell phone screen, its almost like the stimulation is doing it but it really seems to come from my head.

the other symptom is an issue where it becomes hard to gauge my symptoms as often im not able to feel them as i should. even with heat and stuff i cant feel it usually if its really hot weather i can tell its hot but i dont feel the heat, another example is if people around me are eating spicy food i can tell its spicy but its dulled. everything is dulled even my own symptoms where i have things happening everyday and its hard to tell whats even happening, i dont know how to explain it other than basically my body is still having the symptoms but my sensory nerves are affected and i dont feel them properly.

it often seems related to the heavyness and another thing is that this will sometimes go away for very short periods maybe 30 minutes to a couple hours at most and i can tell whats wrong alot better with my symptoms, food tastes better, and even smells are more noticeable and stuff, usually when this gets better randomly its when a symptom of my changes during the day, if theres all of a sudden a change in any of my symptoms then things seem normal again with this but it only ever lasts a short time

has anyone had these symptoms?

 

[Wonko]

Sorry but I've only skimmed your post.

I recognize pretty much all of your symptoms, including the 2 you are asking about. Some, but not all either are or have been everyday symptoms at various stages of my crawl through life with M.E.. Others I have experienced but only rarely (e.g a few times a year at most)

edit - sorry, if you want I'll get back to you on this, as far as I know I have some unusual symptoms for pwME, but then I have a couple of other things wrong with me as well. I can probably, over time, add significantly more, and weirder symptoms to your list but for now, you're not going mad, it's normalish to have seeming bizarre symptoms when your brains getting starved of energy.

 

[Paralee]

@Really , I read about this not long ago but can't find it again, sorry. I did find it could be a pinched nerve in the back or neck for those two symptoms you are asking about and a chiro could fix that. Also something called Chiari Malformation and something called Vestibular? Sorry I forgot the whole name of that. I even found TMJ and bad sinus' that could cause it.

But you've got a lot going on there. I've had that brain electric shocks before. The rest of what you're describing sounds kind of like a sort of migraine (there's a bunch of kinds). I found not feeling heat etc. is common in Asburger's Autism, and have you taken a fluoroquinolone lately, or a while back? I had a lot of those symptoms after I did.

I think if it were me I'd try the pinched nerve first. So sorry, I hope you find answers.

Edit, also adrenals can do some of those things, and high/low calcium or electrolytes.

 

[Richard7]

Hi @Really and @Paralee I'm a migrainer and yes these symptoms are all associated with migraines which are a kind of sterile inflammation in the brain. In ME/CFS (and autism) we also have major issues with inflammation so I guess it could be a different way of getting to the same place.

My migraines are triggered by glare and pattern glare and that heavy feeling (in my shoulders particularly) is an early warning sign that I am in bad light (LED or fluorescent) so yeah computers can be an issue. When you are not looking at the phone could you be looking at a surface that it's light is strobing?

I know early on in my CFS in 2003 I had a period of two or three of weeks where I was making tea with two or three pot bags per cup and complaining that I could not taste it, switching brands and assuming that the fault was in the tea and not me.

I only realised that I had no sense of smell when I tried to make a curry and found that I could not smell the ground cloves or taste the chillies.

In my defense I was suffering from chronic migraine and CFS.

A biochemist I spoke to at the time suggested that I might be having trouble making/recycling neurotransmitters. Given the issues we have with doing anything in CFS this seems to make sense to me.

These days I find like you that sensation comes and goes. And that I have had CFS for so long that I have forgotten what full normal sensation feels like.

In 2014-15 I was trying to do bodyscan meditation to deal with anxiety and failing, perhaps because I could not feel my body. Indeed I had no memory of feeling my body and thought bodyscan mediatation was just an imaginative exercise. It was only when I played around with methylation in late 2015 and started having strange sensations in my hands and arms that I spoke to someone and was reminded that normal people can feel their bodies without having to touch them.

 

[Alvin2]

Are you on any anti depressants or neuroleptic drugs?

 

[Really]

hey guys i will reply to you all soon, i did take fluquionlone antibiotics 2 years ago and that is how all my symptoms started. just sitting here going on the computer for 5 or 10 minutes starts making me really heavy, head and body and arms, then i start to bob up and down in my body and it becomes physically hard to swallow theres a physical sensation in my head and top upper forehead area that seems like it physically effects swallowing, my head and things start going in slow motion, i cant look at things with my eyes and start having brain zaps, and i get this suffocating air hunger being on here that seems like it comes from my head physically? things seem heavy to carry to a bottle of water, or even a blanket over my lap seems heavy lifting the blanket then it can randomly seem light again?

then i can be sitting here and i get a pressure thing in my face for a second and then i start to get really light and less heavy i guess thats what normal is like? then im more heavy again but its really weird as i thought maybe a pinched nerve too as sometimes when i rub my left upper back i get less heavy but how is that possible if computers affect me too? this literally seems hopeless

 

[Really]

i should say too that even if i dont use computers i have these symptoms as i have tried not using computers at all of course. some really weird stuff has been happening as the last few days i have only slept 1-2 hours a night and last night i was having the usual symptoms but then the neuropathy type stuff in my face and entire neck area kind of like a bit of a burning on the skin went away instantly when i touched my toungue to the top of my mouth kind of thing, and as soon as this happened it felt like my nervous system went into a different state as 70 or 80 percent of my symptoms felt better, all the physical stuff with my head and even touch felt normal putting my hands together or touching my fingers to my arms or legs

a few things felt worse like i felt a bit more seizurey and having my eyes open or closed was really bothering me just the normal specks that you see, and the air hunger felt different as i guess the issues i have with my neck seem to affect it, it felt more like a nerve issue or nerve damage with my chest and mouth.

after less than a hour the symptoms started again but in the last 12 hours they have went away and got better a few times. this has only happened once or twice before ever which was a few weeks ago in a similiar situation when i had only slept 1-2 hours a night for a few nights the thing with my neck went away and lots of things felt better even physical issues with my head that affect swallowing. this all just sounds so crazy i wish i could explain my symptoms better but they somehow seem related to sleep in a way,

i actually havent slept for even a second in the past 24 hours and the night before i only slept 1 hour and i wanted to come on the computer to see how it would affect me when my nervuos system went into this normal state and ive been on the computer for 30 minutes now totally normally with way way way less symptoms than usual but now i believe its affecting me

i get so scared of dying and stuff with all these crazy things happening and then not being able to sleep on top of it. if anyone wants to talk on the phone sometime or just contact me in any way, or if they have found anything that has helped them and believe it could help me please let me know. the things i would give to be normal

 

[Wonko]

IMO you need to be discussing this with a Doctor, especially if these symptoms are bothering you as much as they seem to be. As I said I have experienced most of them, with others even weirder, they didn't bother me, they are just things that happened. I understand most people don't see such things the same way and it upsets them. If it does then see a Doctor.

At least to sort out the sleep, don't sleep for long enough and you'll go crazy, literally.

 

[PatJ]

not being able to sleep on top of it.

If you check this blog post you'll find a long list of things I do to get better sleep.

I also have severe sensitivity to light from computer monitors and other sources. LED is the worst by far, but flourescent also causes problems. Both affect my thinking, coordination, can cause nausea and many of the symptoms you experience.

To use a computer I have to rely on an old laptop, dimmed, and set to white text on a black background. For some reason I've never figured out, I can be super-sensitive to one monitor but not-so-sensitive to another, even for two laptops with the same model number. In my house I can only use incandescent lighting.

I used to be so sensitive to light from computer monitors and TVs that just a glance could set off increased brainfog, feelings of internal trembling or vibrating, and other effects that would last for up to 24 hours.

Some things that have helped to reduce my sensitivity to artificial light include:
* Terry Naturally Clinical Glutathione
* Anti-inflammatories such as flax oil and proteolytic enzymes
* Low Dose Naltrexone
* MethylB12
* Recognizing orthostatic intolerance symptoms and lying down before they increase too much

I've also found some things to avoid because they increase my sensitivity to artificial light (and cause or worsen other symptoms):
* Post-exertional malaise (PEM)
* Lack of sleep
* Vitamin D

 

[pattismith]

head pressure heart palpitation