Thanks toTincup and Lymemomtoo and others for your posts on such swellings, and swishing noises. I/we have been traumatized by horrible treatment from physicians this past year, because all of my daughter's ailments are so weird.

Your posts stirred me out of my helpless- ness (after years of advocacy, spinal taps, MRI's etc. I was feeling truly helpless).

I just asked the school nurse to feel the top of my child's head. We are in the middle of a northeaster (storm) and the pain is horrendous.

The nurse not only felt the swelling on top of her head (and felt others' heads to make sure others didn't have it) but she FELT A PULSE on top of her head!!

The nurse is e-mailing a note to my daughter's new doctor with her observations.

She also observed the swelling in the neck that the massage therapist wrote the MD about.

Maybe he will listen! I no longer trust that I or my daughter can just go in a report things. I am having others observe and document and give to the MD. He is wonderful and open (unlike the previous one) but I am giving him the best shot possible at having credible stuff for his perusal, and for specialists.

Yes, this seems to be common with Lymies. My Neuro didn't know what to make of it.

So sorry to hear about your daughter's experiences! Bless her heart, I'm doing good just trying to survive this crap at my age - can't imagine being a young person dealing with it all!

As far as 'mucking up' MY thread...PLEASE! Honey, I'M the one that mucks up my thread - constantly putting my foot in my mouth, accidently saying things that can be misconstrued by others. So anytime you can add something to the conversation - perhaps it can keep me from adding more stupid stuff.

I'll bet your daughter will 'knock 'em dead' at the play. It shows great strength to be in misery and still perform. You've most certainly got a little gem for a daughter.

Blessings,

I responded on the other post... and just now saw this one. Sorry.

By the way.. an ice pack might help also. I like the kind that is in a plastic bag like thing, that is full of gel and can be kept in the freezer and used when needed. Using real life ice "packs" or anything larger or harder hurts the head. This type are more comfortable.

Using it on the back of the neck, jaws, and ears may also help. A few minutes at a time are all that is needed in one spot.

Let us know how she.. and you.. are doing.

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If you get the choice to sit it out or dance...

For me head swelling is very common. It gets worse with trapped die-off, hormonal changes, and yes the weather.

Last week I noticed a new area of tenderness on my scalp.., , the skin was elevated and swollen... This has happened for many years, so I just combed my hair gently and watched it. Usually I end up with flaky skin on my scalp, maybe some discharge... this time was different. I got burning red patches on my scalp, that are migrating as more swelling appears. LLMD's office told me to get my PCP to look at it....

Might do that tomorrow...got things to do today

Anyway, the thing I'm trying to get to, is yes, the head can swell, and in a healthy person the plates of the scull and suture joints should not be fixed, but subtly flexible.

Headache a bit better today, with correspondingly less swelling, weaker palpable pulse. So this must be the cause of the pain.

but have utilized cranio-sacral therapy, with someone who also does acupuncture and polarity --

but once I was with Lyme (for me) he focused on cranio-sacral.

This is a difficult modality to fully explain, and I know there's this one really good book on it..if you want me to get the name of it.

Just wanted to say from my experience with it, I would think this could be a good avenue to persue, it would likely have many other benefits, but I think releasing blockage and increasing flow and energy to the area using the gentle forces within her body could be very supportive to this problem.

I had great signs of relief in my own symptoms related to the encephalopathy.

You would need to find someone skilled, tho - there is a board reference somewhere as well --

For my situation at the time, we did ten weeks, once a week..and then would take a break and let the body balance..and so on.

Mo