Excessive Head Pressure

[POTSAly]

Hi Everyone,

I've never posted on a forum before, so I'm not quite sure how much or how little detail to include. 

But basically, my newest symptom that's getting increasingly worse is extreme head pressure and heaviness. Every day, I experience this pressure that gets worse as the day goes on. It increases when I bend down and gets worse the more I think or move. Sometimes, my head pulses, feels like a finger is pushing on a spot, or I'll get a temple headache. I also have other concussion symptoms that arrive with the head pressure, but I haven't hit my head. In the late evenings, I get to the point where I can hardly lift my head and I feel like my neck is weak, and I can't bend down or I'll experience extreme, disorienting vertigo and pressure on my whole body.

To my knowledge, I've never had migraines before. But I looked up the types of migraines, and my symptoms don't fit any of them. I had a brain MRI done and local docs said it's normal. I'm waiting for my dysautonomia doc to review it.

Have any of you experienced symptoms similar to these? If so, did you ever find out what might have caused them?

Thanks so much for any feedback!

[Knellie]

@POTSAly -I am so sorry you haven't been feeling well! That sounds so much like my symptoms! I have been trying to figure out if I have Intracranial Hypertension headaches. I also had an MRI that came out normal and when I bend down it feels like a giant rock rolls to the front of my head and makes it hard to breathe through my nose. I get bouts of vertigo as well. I have headaches 24/7 and have been diagnosed with chronic migraines. I would advise you to find a doctor who is willing to listen to what you have to say. You should look into CSF leaks. That could be causing your symptoms. CSF leaks can sometimes mimic dysautonomia symptoms.

[POTSius]

@POTSAly

Are you 100% sure it is pressure inside your head? Maybe it is muscle tension in the muscles around your head and neck?

I used to get bad headaches until I started to massage my temples, as I describe in the following post. 

 

[POTSAly]

On 12/30/2020 at 4:04 PM, Knellie said:

@POTSAly -I am so sorry you haven't been feeling well! That sounds so much like my symptoms! I have been trying to figure out if I have Intracranial Hypertension headaches. I also had an MRI that came out normal and when I bend down it feels like a giant rock rolls to the front of my head and makes it hard to breathe through my nose. I get bouts of vertigo as well. I have headaches 24/7 and have been diagnosed with chronic migraines. I would advise you to find a doctor who is willing to listen to what you have to say. You should look into CSF leaks. That could be causing your symptoms. CSF leaks can sometimes mimic dysautonomia symptoms.

Thanks, Knellie! I'm sorry you haven't been feeling well, either, but I'm glad I'm not alone in experiencing these symptoms! I don't see them mentioned within dysautonomia groups.

Yes, I've been wondering about intercranial hypertension and CSF leaks. I think I've ruled out a CSF leak though because I read that the fluid is supposed to drain out of your nose whenever you bend down, and I don't experience that. 

It's been extremely difficult to find good docs, and "the best" local neurologist flat-out dismissed me because he doesn't treat dysautonomia. I'm just hoping my dysautonomia doc is in a good mood and gives me the time of day during my followup next month. 

[POTSAly]

On 12/30/2020 at 4:16 PM, POTSius said:

@POTSAly

Are you 100% sure it is pressure inside your head? Maybe it is muscle tension in the muscles around your head and neck?

I used to get bad headaches until I started to massage my temples, as I describe in the following post. 

 

Thanks, POTSius! I've been wondering about this as well, because my neck is very stiff and painful and my head pressure increases when I turn my head. But I haven't been able to get massages due to COVID and all the usual at-home remedies--hot packs, cold packs, massagers--don't work for me.

As for manual massaging, I have other health problems that prevent me from being able to massage myself. I'll still check out your post, though! I just bought a manual neck massager and I'm hoping that'll help at least a little and not be too hurtful. 

[POTSius]

3 hours ago, POTSAly said:

Thanks, POTSius! I've been wondering about this as well, because my neck is very stiff and painful and my head pressure increases when I turn my head. But I haven't been able to get massages due to COVID and all the usual at-home remedies--hot packs, cold packs, massagers--don't work for me.

As for manual massaging, I have other health problems that prevent me from being able to massage myself. I'll still check out your post, though! I just bought a manual neck massager and I'm hoping that'll help at least a little and not be too hurtful. 

For me muscular overuse triggers symptoms, so I only massage like 30 seconds at a time as the massaging itself can be quite straining, but I do it a lot over the course of the day, like a dozen times or so. That actually seems to work!

I don't know the specifics of your other health problems but maybe that is helpful info

[POTSAly]

On 1/2/2021 at 5:27 PM, POTSius said:

For me muscular overuse triggers symptoms, so I only massage like 30 seconds at a time as the massaging itself can be quite straining, but I do it a lot over the course of the day, like a dozen times or so. That actually seems to work!

I don't know the specifics of your other health problems but maybe that is helpful info

Oh, I wouldn't have thought of that! Good idea, but probably hard for me to remember.  I'll give it a shot, though! Thanks so much!