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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Messages
16
I've been feeling 'weird' to put it lightly for a couple of days. I don't recall ever having this. I started off having strange waves of heat/nausea/dizziness that felt like electrodes were pulsing through my brain. Almost like my vision was sliding away, without the visualisation... just the sensation. I checked my heart rate: 97bpm and then took a bath. In the bath I experienced head twitching and when I got into bed, it felt like my arms and legs were contracting and twitching. If I fight it, it makes the muscles tense up even more. I did a self test and tried to walk a straight line, one foot after the other with my eyes closed and lost my balance. I'm still feeling the weird prickly electric head feeling with more of a want to vomit. I know this isn't anxiety because I get chest pain with that.

Anyone had these symptoms? I find them really hard to express because they're so strange. The closest I can come with the twitching, is when you see something gross and your body reacts...

x
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
Louabird, I've had so many weird symptoms that I understand how difficult it is to even describe some of them. I don't have really weird ones so much any more but when I did I felt like I was the only one having such strange experiences. I think you will find that there are many here who have had very weird symptoms...............having said that I am not familiar with what kind of tests you've had so far .......but i would defintely relate these symptoms to your Doctor. Through my journey with this illness...........it was always hard to discern when I should go to the doctors whenever I had a new set of symptoms or just sit tight and put it down to CFS.............I guess it's a very individual thing......but it sure doesn't hurt to side with caution. Hugs to you..........I know sometimes it can be down right scary............we are here for you.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
hi louabird, like Tammy says, its worth running these past your doc. we all get slightly different symptoms so it could be part of ME/CFS or it could be something else.
Its not something i have had, i dont think, but i know it is hard to describe symptoms like this so who knows. I hope you get some help to identify what is causing it and get some relief from it..
 

SOC

Senior Member
Messages
7,849
The heat/nausea/dizziness and high HR part could be some autonomic thing related to ME -- POTS, low BP or some such. A hot bath during such an episode can make it worse by dilating blood vessels.

The sudden onset twitching and losing balance with eyes closed sounds neurological and should probably be checked out promptly.

Another thought -- have you ever had migraines? Your symptoms sound like those my friend had. She was diagnosed with atypical migraines. Migraine meds helped her a lot.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
This illness can go throu major shifts in its symptom complex. Sounds like you may be starting to shift into the more neurological ME symptoms eg myoclonus which in my case was rhymatic contrating on and off of my body muscles or fasculations. I got twitching of body parts or whole body spasms with this too. It may be possible to feel this starting to occur before its noticable visually.

Most of us wouldnt be able to walk a straight line with eyes closed.

I checked my heart rate: 97bpm

heat/nausea/dizziness that felt like electrodes were pulsing through my brain.

I strongly suggest with that you check your blood pressure during the sensation ..as some of us get sudden hypertension (esp if on feet) and I find that orthostatic hypertension causes me heat/(I get a hot flush) nausea/dizziness and a weird head feel when my BP suddenly spikes and goes up to 170/136.

Had you been on your feet or standing when this occurred???

Im going to say what the others have.. get any new symptom checked out. Also..do not hop into the bathtub if you are feeling strange... if you have a pass out while in there you'd be in huge trouble.
 
Messages
8
I've been feeling 'weird' to put it lightly for a couple of days. I don't recall ever having this. I started off having strange waves of heat/nausea/dizziness that felt like electrodes were pulsing through my brain. Almost like my vision was sliding away, without the visualisation... just the sensation. I checked my heart rate: 97bpm and then took a bath. In the bath I experienced head twitching and when I got into bed, it felt like my arms and legs were contracting and twitching. If I fight it, it makes the muscles tense up even more. I did a self test and tried to walk a straight line, one foot after the other with my eyes closed and lost my balance. I'm still feeling the weird prickly electric head feeling with more of a want to vomit. I know this isn't anxiety because I get chest pain with that.

Anyone had these symptoms? I find them really hard to express because they're so strange. The closest I can come with the twitching, is when you see something gross and your body reacts...

x
Thats electrical so it must have something to do with your nervous systems or nuerological pathwys/receptors right?Ive had weird buzzing electro feelings on my head and feet and all over my body before I WOULDNT BE 2 WORRIED AS LONG AS ALL YOUR VITALS FEEL all right.Typed capslock accidently but looks like it worked out haha.Your body has an electro magnetic feild and theirs electricity everywhere in the universe but I would limit the ammount of wireless devices around you cause they can cause health problems.(phones,wireless internet,smartmeters,cell towers ect)
 
Messages
8
H
I've been feeling 'weird' to put it lightly for a couple of days. I don't recall ever having this. I started off having strange waves of heat/nausea/dizziness that felt like electrodes were pulsing through my brain. Almost like my vision was sliding away, without the visualisation... just the sensation. I checked my heart rate: 97bpm and then took a bath. In the bath I experienced head twitching and when I got into bed, it felt like my arms and legs were contracting and twitching. If I fight it, it makes the muscles tense up even more. I did a self test and tried to walk a straight line, one foot after the other with my eyes closed and lost my balance. I'm still feeling the weird prickly electric head feeling with more of a want to vomit. I know this isn't anxiety because I get chest pain with that.

Anyone had these symptoms? I find them really hard to express because they're so strange. The closest I can come with the twitching, is when you see something gross and your body reacts...

x
How could a weird prickly head feeling be anxiety?Sounds like you been listning to to many doctors.Im really intrested if you could tell me your anxiety symptoms and how it comes on.Is it anxiety which is psychological or your body being outta balance from the cfs
 
Messages
8
Im new to this forum and im happy i found it cause im hoping to gain a better understanding of how to deal with my cfs from listning to other peoples symptoms and storys.Am I the only person with cfs who has serious breathing/cardiovascular symptoms or what.