Doing better but head symptoms remain

Status: I am 3 months into treatment and my joints are better, I am able to exercise (fairly intensely), my sleep is good, my brain fog somewhat has lifted, I am not (as) emotionally labile, I have all good grades--and have yet to miss school due to symptoms (by some miracle).

The most bothersome symptoms I still have are head symptoms. I feel like something is bubbling up in my head and rising to the surface of my scalp (so hard to describe). It is tingly/burning/throbbing. As if my scalp has a pulse! At times I have what feel like sores on my scalp (although I asked my friend to look and she said there was nothing there). If I don't get enough sleep I feel so drunk and out of it I have to take a nap. At times I get numbness on both sides of my face. I take 600mg of neurontin (in the form of grailse) at night which has helped some. But is this really nerve pain?

Has anyone struggled with head symptoms like this and what relieved them?

Post Edited (Brainzap545) : 3/3/2017 5:22:26 PM (GMT-7)

Hi Brainzap545,
I know what your talking about with the head symptom that is like a pulse, I refer to it as thumping.
I am just 6 months into treatment. The thumping and head pressure had gone away a few months ago, but the thumping came back but at a lower level and usually later in the day or if I get stressed.

I have had sores on my scalp for over 5 weeks now. My husband looked at them and said they are like small red pimples but they do itch sometimes and are tender. Gross, I know.

I only occasionally have numbness in face/head/neck now so that has improved.
I think Sida acuta and Uncaria rhynhophylla tincture has helped and just more time being on all the herbals, abx, detox and supplements.

So glad to hear your at school and have good grades. Keep up the good work but make sure you get enough rest too. Sincerely, Jo

I have head issues, too.

Mine isn't thumping...more like pulsing/throbbing. Early on, when I stood up, my head would throb...this was pre-diagnosis....so I had my husband take my blood pressure...I thought for sure that was it...but nope, pulse and bp were just fine. Also felt like it was in my ears.

Now, I don't get the head throbbing when I stand up anymore...but I still have a heartbeat in my ear - only noticeable when I put my head on the pillow..and the ear is against the pillow.

I also get a sore, hot spot on my scalp - the back of my head near the top...in the morning if I wake up and I'm on my back with the back of my head on the pillow.

...and I used to get 'tinglies' on my scalp - at the back of my head...they've resolved.

Another thing - is some sort of pressure sensation behind my eyes...and it feels like I'm in a daze at the same time...anyone have that?

Purrrsiankitty said...

Girlie said...
I have head issues, too.

Mine isn't thumping...more like pulsing/throbbing. Early on, when I stood up, my head would throb...this was pre-diagnosis....so I had my husband take my blood pressure...I thought for sure that was it...but nope, pulse and bp were just fine. Also felt like it was in my ears.

Now, I don't get the head throbbing when I stand up anymore...but I still have a heartbeat in my ear - only noticeable when I put my head on the pillow..and the ear is against the pillow.

I also get a sore, hot spot on my scalp - the back of my head near the top...in the morning if I wake up and I'm on my back with the back of my head on the pillow.

...and I used to get 'tinglies' on my scalp - at the back of my head...they've resolved.

Another thing - is some sort of pressure sensation behind my eyes...and it feels like I'm in a daze at the same time...anyone have that?

yes😕

Sometimes my vision gets blurry....when the pressure in my head happens...and I can't concentrate.
Maybe it's the start of a migraine? I've never had one so don't know what they feel like

Acetyl L-carnitine 500 mg is very helpful for brain inflammation. And Japanese knotweed, Gingko and Kudzu.