Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Ok, I know Lyme does some strange things to us, but head pressure sensations that randomly wander around my head? What the heck? Anybody else have this?
Basically, it feels like the bones in my head are too small. But in random places all over my head, not all in one spot.
This is a new symptom for me as of today...
Current meds are (been on them a long while): Flagyl, Cefazolin, Zofran; I'm also taking probiotics, molybdenum, chromium, iodine, and am on IV food (amino acids, electrolytes, vitamins, saline - via PICC) since I can't eat anything.
Comments, thoughts, ideas welcome...I'm at a loss on this one...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, what you describe is really fairly common. I'm vary familiar. The author below mentions the meandering symptoms as classic (and not just to diagnose but to understand what it's like living with lyme, even during treatment).
Rather than too small, the bones in your head may be too TIGHT (so to speak) due to inflammation.
There are some "spaces" between the outer skull plates that allow for the plates to shift. Sometimes, those can be tight.
Cranial Sacral therapy can help. But never - ever - let anyone suddenly twist your neck or spine (it's terrible for anyone with lyme and can cause damage).
The safest sort of technique would be UPLEDGER INSTITUTE (or similar, that is gentle). See at their site who in your area is trained in that approach.
Still, remind them each time, no sudden twisting of neck (just in case they aren't totally on board with avoiding that technique from other styles they do).
ANTI-INFLAMMATORY supplements can help. Magnesium, etc. It can also help reduce some muscle tightness, spasms.
Berberine has helped me the most with various kinds of head pain. And WATER.
Ergonomics / posture, too. Fatigue can send the slipping head off of the shoulders, so to speak. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say you take some amino acids in your IV mix. And since you get no solid (or even pureed food?), you would need some glutamate / glutamine but only so much. It could be out of balance for someone with neurological conditions and the dietician, even doctors, won't know about this.
Be sure to avoid more than minimum required daily amount of glutamine / glutamic acid for that can cause what you describe with pain. See Wilson's article here - and the one from ITM:
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG and can be very excitatory -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say you are on IV food (which I assume is gluten-free), still, check that (have the ingredients changed?), your lip balm, any beverages, breath mints, gum . . . because:
Gluten can cause inflammation and increased pain signals, too.
Some might be slipping in somehow. See "Hidden Sources of Gluten" here . . . and also how MSG or "natural flavors" can cause inflammation and also over excitation of nerve fibers - and that can cause lots of pain signals to go bonkers:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
You can see diagrams here of the cranial plates -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yeah, that's what I meant by too small - like stuff inside was too large for the bones to stay together comfortably and there is pressure on the bones from inside.
I am not able to eat or drink anything the normal way, except hard candy. I know the candy is gluten-free (made in a GF facility), and it is organic and non-GMO and free of all artificial ingredients. Even their citric acid is not sulfited! But I haven't been "eating" much of the candy recently, either...
A friend who also has Lyme told me he has had the same wandering head pressure thing for 2 years.
Not doing cranial-sacral...touching my head in certain places dramatically increases the vertigo...
IV nutrition (TPN) is usually gluten-free...it has to be pretty pure (no whole food proteins or food protein peptides; amino acids only) to go in the veins. However, I will double-check to make sure.
I'll call the home infusion pharmacy Monday and ask if they changed anything in my most recent shipment...they do make adjustments in electrolytes, and sometimes have to substitute one nutrient form for another due to shortages, etc.
Thanks for the inputs...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your doctor should be made aware of this. I can offer some thoughts based on my own experiences & personal study - but I have zero medical background. There can be various causes.
Magnesium comes to mind, of course (and is helpful to reduce inflammation). Be sure you are getting enough, in DIVIDED doses. Never all at once.
Hope you feel better - and can take in some beauty today. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yeah, I was going to tell him when I see him next.
Magnesium is in the TPN (IV food), which is infused over a period of 16 hours every day...so yes, it's not given all at once...
The head pressure is not as bad today. I'm hoping it disappears tomorrow!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I get head pressure from candida or from allergies... if that helps any.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Candida, maybe...though it isn't nearly as much of a problem as other issues...
My allergies are the lowest they've been in years & years - not taking any allergy meds, only need a drop of Copaiba essential oil daily on my forehead to keep the allergies under complete control.
Found out there was a change to the trace minerals added to my TPN. This may have contributed to the head pressure.
I also figured out I need adrenal support. Going to discuss this more with my doctor, may possibly go back on a very, very low dose of hydrocortisone (yes, I'm aware of the caveats of taking this drug while dealing with Lyme).
Thanks for all the inputs.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Razzle,
A very low dose of hydrocortisone is not at all contraindicated with lyme. In fact, it's often suggested by various LLMDs.
Discussing the very low, safe Physiological replacement dose range of hydrocortisone for some with adrenal dysfunction. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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