anyone with constant pulsations in head?

[Rlman]

Hi everyone,

anyone know what's causing head pulsations? anyone else have this symptom?

ever since I got mono in Dec 2010 when my CFS started I can feel pulsations in my head. The 1st 4 months of the illness it was really awful, now not as intense in pressure though still constant pumping, maybe bc my blood pressure a little lower now though in normal range. It feels like my heart is in my head. I had an MRI which was negative. Someone told me it could be my adrenalin pumping, but before my illness I'm sure I had adrenaline pumping but never ever felt pulsations in my head. Maybe is it heart not functioning properly? These head pulsations really make me think their might have been damage in my head but at least it's a lot better now. I'm basically bed-ridden these days, my energy comes from my adrenaline, I have adrenal exhaustion verified my saliva test, have heart palpation issues, light sentivity, weak eyesight unless adrenaline pumping.

Another weird thing: My mono heterophile antibody test is positive, even though EBV IgG test panel was negative ( i testes this 3 times) and CMV negative and also did PCR for EBV, CMV, HHV-6, candida all negative.


Thanks,

Ron

 

[Old Salt]

Sounds like inflammation in your head. Not a simple situation. We have much in common, but we are all different.

 

[Ocean]

This just happened to me recently kind in the ear area of my head. It was just for a day though. I have no idea what it was.

 

[snowathlete]

Since ME when I sit still I feel my head - and my whole body - rock with my heartbeat. Like rock several mm back and forth.

 

[lansbergen]

Sounds like inflammation in your head.

I agree. The immunemodulator I use, helped my immunesystem to fix it.

In my brain it is long gone now but during flareups it sometimes happens I feel my heartbeat in my ears.

Presumably inflamed cranial nerve or bloodvessels.

 

[BFG]

I get this too. Sometimes it sounds like an ocean in my ear. It could be pulsatile tinnitus.

 

[Sherlock]

I have a certain feeling in my head for for years, since getting sick. When I get something like a common cold, that turns into a mild temporal headache.

 

[loayachil]

I also have this major pounding in my left ear, though there is no sound.
Very annoying but not on the top of my ten worst symptoms list. (although as you are I am curious if it is an indicator of sorts)
I also used to have a similar pounding in my eyes. Kinda felt like the pulse was being sent into them.

 

[niall]

Hi everyone,

anyone know what's causing head pulsations? anyone else have this symptom?

ever since I got mono in Dec 2010 when my CFS started I can feel pulsations in my head. The 1st 4 months of the illness it was really awful, now not as intense in pressure though still constant pumping, maybe bc my blood pressure a little lower now though in normal range. It feels like my heart is in my head. I had an MRI which was negative. Someone told me it could be my adrenalin pumping, but before my illness I'm sure I had adrenaline pumping but never ever felt pulsations in my head. Maybe is it heart not functioning properly? These head pulsations really make me think their might have been damage in my head but at least it's a lot better now. I'm basically bed-ridden these days, my energy comes from my adrenaline, I have adrenal exhaustion verified my saliva test, have heart palpation issues, light sentivity, weak eyesight unless adrenaline pumping.

Another weird thing: My mono heterophile antibody test is positive, even though EBV IgG test panel was negative ( i testes this 3 times) and CMV negative and also did PCR for EBV, CMV, HHV-6, candida all negative.


Thanks,

Ron

I have had this symptom for the past two years, not before that. I have had CFS since 2004 and fibro since the 1980"s. Dr. Klimas said it is neuro-inflammation but did not elaborate anymore than that. This symptom really causes me concern in the fact that it is my brain that is involved and my condition is getting worse with time. Hope the antivirals I will try soon stop this.

 

[ldhunter]

Had the same thing...For me, It was elevated cerebral spinal fluid pressure. I was first told to go to an ophthalmologist to look for papilledema (swollen optic nerves-hence the light sensitivity), then had a lumbar puncture that confirmed my opening pressure was more than 3 times what is considered normal. I had to have a shunt placed and it has helped tremendously. The thought was also neuro-inflammation, but no known cause... This may not be the case for all... but this is what happened to me.

 

[Rlman]

Thanks for all your replies!

Does anyone know what's the cause of the neuro-inflammation?

lansbergen, what immunomodulator do you use?

 

[lansbergen]

lansbergen, what immunomodulator do you use?

Levamisole. I saw articles about levamisole analogs/derivates. Maybe one of them could work better/faster.

 

[xks201]

Probably high adrenaline due to low sodium due to low aldosterone and possibly low cortisol.

 

[Rlman]

Probably high adrenaline due to low sodium due to low aldosterone and possibly low cortisol.

Hi xks201, actually I did a 24 hr saliva cortisol test this past June and it was low in the morning. I definately have adrenal exhaustion, and a dr prescribed me 25mg a day cortef but I've been avoiding it so far bc scared of the side effets from stories I've read. Should I take it? how have been your experiences with it?

I don't think hormones are main cause of my head pulsations though bc last year my 24 hour urine homrone test actually showed really high aldosterone and cortisol output in range. Back then I had more energy, could walk but my head felt really awful.

Have any of you had an MRI showing encephalitis (head enflammation)?

 

[Rlman]

by the way, my pulsations do increase in intensity and speed when my adrenaline is pumping in stressful situations but the pulsations are constant all day at a lesser intensity which makes me think there is something else as well causing the pulsations unless adrenaline is pumping all day

 

[beaverfury]

Hi everyone,

anyone know what's causing head pulsations? anyone else have this symptom?

I've had the exact same symptom since getting ill three years ago.

Initially i treated it as some sort of brain damage from the virus. I think i've made some mistakes in attributing it to various things, and i still dont know what the heck is causing it.

I experimented with various things and some helped. Gupta amygdala retraining, tianeptine( any anxiolytic might help), meditation. Strangely, while mucking about with meditation and inducing the 'shivers down the spin' feeling i could make the pulsing subside. This 'piloerection' reaction is apparently a release of dopamine somewhere in the brain.

To my surprise, last year, the symptom morphed into something like a viral feeling into my head, and now i am attributing it to inflammation also. A release of cytokines perhaps?

Whatever it is, it's disturbing and disruptive. It doesnt get mentioned much in the literature but I would rate it as one of my most unpleasant symptoms. In the top five anyway. I dont know if it is linked to brain fog.

 

[Rlman]

Had the same thing...For me, It was elevated cerebral spinal fluid pressure. I was first told to go to an ophthalmologist to look for papilledema (swollen optic nerves-hence the light sensitivity), then had a lumbar puncture that confirmed my opening pressure was more than 3 times what is considered normal. I had to have a shunt placed and it has helped tremendously. The thought was also neuro-inflammation, but no known cause... This may not be the case for all... but this is what happened to me.

Thanks for sharing...Did you do an MRI, and if so, did it show anything? My MRI was negative.

Was the shunt inserted into the spine or into the brain?

Thanks for sharing your story.