Head pressure, mostly felt in the back of my head and neck area, gets worse when I do certain activities

[HurrySaveMe]

I started experiencing this late July/early August last year, it started off as neck pain which initially I went to a chiropractor for. Eventually this neck pain evolved to head pressure, mostly felt in the back of my head and neck but also feel it in my forehead at times. I've experienced this on and off since, it gets worse if I stand or sit with my head upright. It also intensifies after lengthy social interactions, and after waking up from sleep at times which likely has to do with my sleeping position that night.

This has taken a toll on my cognitive abilities, vision, sleep quality and overall energy as I've been dealing with POTS/dysautonomia-like symptoms. My vision has gotten blurrier and I've been dealing with sensory overload issues from lights and sounds. I'm waiting for an appointment with a neurologist, but I just know they're likely not going to find anything as they don't have upright MRI's where I live.

Also another symptom I started experiencing last year which I don't know how much this plays into all this are hypnic jerks, when I'm taking naps or going to sleep I get these intense jolting movements in my arms and legs which can make it hard for me to fall asleep at times. I've been experiencing this on and off as well.

So I'm wondering if this phenomenon is something many of you have experienced, and if anything in particular has helped, such as PT?

 

[hapl808]

I've experienced all that with worsening intensity for a number of years. The myoclonus eventually improved after I was able to rest more (basically 24/7) and stopped trying PT and other stuff which I found drastically worsened my condition (read all the warnings on here about GET).

Don't have a lot to offer. I've seen three neurologists, a neuromuscular specialist, orthopedic specialist, multiple chriopractors when I was more mild (I'm relatively severe now), etc. For me, neck pain strangely seems very connected to anti-pathogen medications and herbs. Ice or heat usually makes it worse, but antibiotics or stuff like that makes my neck feel better.

Unfortunately now I'm pretty severe. Even 10 minutes on the computer or talking on the phone makes my neck start to stiffen and acid reflux starts. I have a ton of threads about it on here I think, basically calling it brain fog for lack of a better term. I never saw that Brain on Fire movie about some form encephalitis I think, but I've wondered if the severe 'brain fog' we're talking about is some kind of infection, or neurotransmitter malfunction, or what? Not necessarily just CFS but some comorbidity? Some people have 'cured' their brain fog without affecting their CFS.

It drives me crazy because I can't even work on things that I could do from bed. I need to zone out to not exacerbate my symptoms.

 

[HurrySaveMe]

I've experienced all that with worsening intensity for a number of years. The myoclonus eventually improved after I was able to rest more (basically 24/7) and stopped trying PT and other stuff which I found drastically worsened my condition (read all the warnings on here about GET).

Don't have a lot to offer. I've seen three neurologists, a neuromuscular specialist, orthopedic specialist, multiple chriopractors when I was more mild (I'm relatively severe now), etc. For me, neck pain strangely seems very connected to anti-pathogen medications and herbs. Ice or heat usually makes it worse, but antibiotics or stuff like that makes my neck feel better.

Unfortunately now I'm pretty severe. Even 10 minutes on the computer or talking on the phone makes my neck start to stiffen and acid reflux starts. I have a ton of threads about it on here I think, basically calling it brain fog for lack of a better term. I never saw that Brain on Fire movie about some form encephalitis I think, but I've wondered if the severe 'brain fog' we're talking about is some kind of infection, or neurotransmitter malfunction, or what? Not necessarily just CFS but some comorbidity? Some people have 'cured' their brain fog without affecting their CFS.

It drives me crazy because I can't even work on things that I could do from bed. I need to zone out to not exacerbate my symptoms.

The worst part of this for me is the massive brain fog I get from it, just concentrating on something like reading and writing feels like it takes a lot more effort now. I haven't played any of my video games lately because it just feels like too much cognitive effort, to say I'm devastated is an understatement. I also just feel disconnected from everything, even music doesn't hit me like it used to.

 

[hapl808]

to say I'm devastated is an understatement. I also just feel disconnected from everything, even music doesn't hit me like it used to.

100%

 

[Shanti1]

I started experiencing this late July/early August last year, it started off as neck pain which initially I went to a chiropractor for. Eventually this neck pain evolved to head pressure, mostly felt in the back of my head and neck but also feel it in my forehead at times. I've experienced this on and off since, it gets worse if I stand or sit with my head upright. It also intensifies after lengthy social interactions, and after waking up from sleep at times which likely has to do with my sleeping position that night.

I wonder if intercranial hypertension is playing a role in your symptoms, it may be something to ask the neurologist about. It looks like you are already thinking about cranio-cervical instability and related issues.

 

[hapl808]

I wonder if intercranial hypertension is playing a role in your symptoms, it may be something to ask the neurologist about. It looks like you are already thinking about cranio-cervical instability and related issues.

I've wondered about IIH from time to time, but the symptoms don't totally seem to match. Also it seems that the diagnostic would include a lumbar puncture, and pretty sure I wouldn't recover from that in my current condition.

 

[Shanti1]

I've wondered about IIH from time to time, but the symptoms don't totally seem to match. Also it seems that the diagnostic would include a lumbar puncture, and pretty sure I wouldn't recover from that in my current condition.

Yeah, there are so many scary stories about lumbar puncture, especially in ME/CFS, I would be hard pressed to consent to a lumbar puncture.

This is an interesting thread on CFS and IIH with the implication that ME/CFS may have a more mild version, more difficult to diagnose. Some of our members have experimented with Diamox.

https://forums.phoenixrising.me/thr...d-idiopathic-intracranial-hypertension.53410/

I don't know if docs are ever willing to forgo the lumbar puncture and just rely on symptoms, MRI, and papilledema for diagnosis.

 

[HurrySaveMe]

I've wondered about IIH from time to time, but the symptoms don't totally seem to match. Also it seems that the diagnostic would include a lumbar puncture, and pretty sure I wouldn't recover from that in my current condition.

Exactly why I won't go anywhere near a lumbar puncture, in my current state it's way too risky. I had one done years ago but that was to check for neuroborreliosis. Have you done an upright MRI before, @hapl808 ? I honestly believe that should be my next step, but again, upright MRI's aren't available where I live and I'd have to travel just to get one done...

I'm seeing a neurologist soon but I'm 95% sure they won't find anything abnormal.

 

[Donsboig]

What you're describing could be consistent with a venous outflow issue. Basically one of the veins that takes blood away from the skull could be blocked in a variety of ways and cause some of the symptoms you describe. It also commonly occurs with intracranial hypertension.

It's a very new and underhresearched area, but if you're interested to learn more there is a group on Facebook with a useful guide and knowledgeable members. Next steps would probably be an MRI or CT Venogram scan to look at the veins in question.

https://www.facebook.com/groups/3737591956275670/?ref=share

 

[HurrySaveMe]

What you're describing could be consistent with a venous outflow issue. Basically one of the veins that takes blood away from the skull could be blocked in a variety of ways and cause some of the symptoms you describe. It also commonly occurs with intracranial hypertension.

It's a very new and underhresearched area, but if you're interested to learn more there is a group on Facebook with a useful guide and knowledgeable members. Next steps would probably be an MRI or CT Venogram scan to look at the veins in question.

https://www.facebook.com/groups/3737591956275670/?ref=share

Do you know if this is detectable through normal supine MRI? Intracranial hypertension is one of the first things I checked for last year when this started by doing an eye exam, and it was normal. I also have other symptoms that don't really match intracranial hypertension but I'm not ruling it out completely.

 

[Donsboig]

It's possible to have intracranial hypertension without papilloedema (probably, somewhat disputed).

It might be possible to have jugular outflow issues without significant intracranial hypertension.

Having said that, it could be totally irrelevant to your case. It's hard to know.

Normal MRI is ok but doesn't image blood vessels very well. MRI "with contrast" shows them more clearly. Supine is fine. I suggest if you're interested please join the group and read the guide, there's lots of good info there

 

[YippeeKi YOW !!]

MORE REVEALED ABOUT THE VAGUS NERVE, AND HOW IT WORKS ......
https://forums.phoenixrising.me/thr...us-nerve-and-how-it-works.88270/#post-2407760

See the above thread for an explanation of how the VAGUS NERVE works, and how tht might apply to the head and neck pressure you're feeling. The info is in the 2nd post, the one with the expanded info about the vagus nerve …. it may or may not apply to your situation, but I hope it helps narrow things down ….

EDIT ... for usual madcap typos ....