posted
Exactly!!!! many other symptoms gone in 1 1/2 yrs of trtmnt. but the head pressure at the back of my skull is still my main syptom. 24/7. Nothing takes it away. I wish I could say it was a headache so others would understand but its different. I've tried everything. Anyone gotten rid of this?
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
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posted
I have had severe head pressure 24/7 for over 3 years.. NEVER goes away, cannot escribe these feeling to anyone.. everyone always thinks HEADACHES, but this comppletely debilitates me.. I have no life beacuse of these head symptoms...
Does it also make you feel as if you are always imbalanced and that you head is full of cement.. but it also creats weird dizines so it is hard to walk? I cannot walk well because of this and especially cannot go into stores as it gets WAY worse..
God I wish to be free from this horror in my head.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Biaxin helped bring down the head inflammation
Schardt (killer antibiotic + Diflucan) helped clear cognitive stuff and residual pressure. Diflucan caused serious headaches (die off) which have mostly subsided since
now im just stuck with the cognitive and neuropsych aspects which are improving slowly but surely.
I would recommend any herbs with excellent BBB penetration as well - cumanda worked well for me for a while but is expensive.
-------------------- long road since 2010 abx got me over the hump diet, detox, and herbs have got me to heal Posts: 174 | From CT | Registered: Jan 2010
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posted
yes,I get dizziness a lot,feeling drowsie... Is this symptom really Lyme related?
Posts: 158 | From pittsburgh | Registered: Aug 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
To me that sounds like a Babesia symptom. Have you treated Babesia?
Posts: 2232 | From USA | Registered: Aug 2009
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posted
my hubby has been sick for over 8 yrs..his pain was always in his head behind his eyes..his eyes hurt so bad he always stayed in a dark room...
4 yrs ago we finally got the answer and now he has been in treatment for almost 4 yrs and he just started to get some relief...he is starting to want to do things...the fact that he wants to is wonderful for me...and i will take all the little steps...and hope for more..
i can't give you any answers...the dr kept changing the meds...we go see the dr wed.. he still has the pain but his eyes are a little better so he is not as dizzy and some days his pain is maybe a #6...
this disease is so bad and different for so many people...what works for one wont work for someone else...
hang in we all know what you are going through..
Madge
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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posted
Wow! Finally, I see that some others are experiencing a similar thing I am.
A description of headache never did it justice. Mine started some years ago as neck pain and stiffness. Now it feels like there is an invisible hand palming my head like a basketball and sort of crushing it.
I'm also off balance which is disturbing. I stumble and waver around at times like someone is drunk, yet I'm sober. I can also related to the head of stone. It's like I've lost all cushioning in my head and can feel (painfully) every step I take. I also get symptoms of trigeminal neuralgia periodically too. It is really compromising.
I had treatment for babesia (Mepron and Azithroymycin), then was on Minocycline and Ceftin. Now I'm on Minocycline, Biaxin, and pulsing Azithromycin. I perceive this to be the most effective combination so far. Glad to see the comment about the Biaxin. Hopefully, this will be effective.
Posts: 56 | From Down Here | Registered: May 2010
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posted
I have the head pressure/swelling feeling too. Its awful! I have not treated babesia yet.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Stephania Root(the tincture) can relieve brain inflammation and help to reduce head pressure (and help with eye symptoms)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
wow, I have the SAME thing!! I can never explain it to people - it is a very strange headache sensation. I have a bunch of different types of head pains - like today was acid brain. Someone has cut open the top of my head and poured acid in it. Sometimes it's throbbing pain - more normal type migraine, usually on the left side. I sometimes get the sinus headache.
But by far the worst is this lower neck/skull pressure type head pain that makes me walk to the left and feel really off balance. It's like a squeezing of the base of the skull and it hurts. It makes my ear weird too.
also have head pressure too. Head symptoms are terrible!
Posts: 618 | From NC | Registered: Oct 2009
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posted
Nothing medical about it, but I would take water pills(diuretic's)to help with the pressure at times. It seemed like it worked.
My LLMD now gives out Singluar which helped too.
In time they get better as you treat the disease. But their a bugger while you have them!
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
yup. 3 years straight and counting...everyday...mine is like Shandy describes....
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I've got this too. It's absolutely relentless. And nothing seems to work. Abx have done nothing for me. There's got to be an end to this agony...
Posts: 57 | From Florida | Registered: Jan 2009
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Experiment with different detox approaches. Lemon water (sipped through a straw to protect enamel) has worked wonderfully for me.
-------------------- long road since 2010 abx got me over the hump diet, detox, and herbs have got me to heal Posts: 174 | From CT | Registered: Jan 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Wobenzym reduced the awful daily headache for me.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I have the same thing every day. MY PT says that my head is screwed on too tight
Actually, physical therapy is quite helpful as it loosens things up a bit. Do you know that your skull is supposed to "float" inside your head, not be tight, tight tight?
I get worse head pain when I'm on Plaquenil - again, killing off the ketes, I assume.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
Head pressure was one of my first symptoms, I initially thought I had a sinus infection. It subsides sometimes, but is terrible while herxing.
Is there anything, anything at all, that ISN'T a Lyme/babesia/bartonella/whatever else we have symptom?
Posts: 246 | From south florida | Registered: Mar 2010
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
quote:I'm also off balance which is disturbing. I stumble and waver around at times like someone is drunk, yet I'm sober. I can also related to the head of stone. It's like I've lost all cushioning in my head and can feel (painfully) every step I take.
This type of head pain is not really a headache, so much as it is an ache in your head. It's muscular and not neurological. Your skull is covered in muscles, and the back of your skull is just one big muscled area. Lyme depletes your magnesium levels. In turn, you get muscle SPAZMS all over the place, and some of us in particular get them here, on the back of the skull.
Because this spazm is so near your ear, it may often affect your balance. Or spread 'referred pain' across the top of your skull (so it feels like someone bashed it in with a hammer), or across your ear (making it red and feel crunchy) or even across through your jaw, making you think you have TMJ.
Note: Muscle spazms do NOT go away on their own. They will continue to cause pain and disrupt blood flow until you do some type of intervention. I lived through this for SOOOOO long, and do not wish it on anyone.
To figure out if this is you, take a knuckle and jam around at the base of your skull. Find a lump or knot? Press REALLY HARD with your knuckle for a minute, and see if the pain you feel elsewhere in your head lets up. Dollars to donuts, I bet it does, of course now the spot you are poking hurts.
To relieve: Trigger point injections (of lidocaine) into the spazm with bust it up, and blissfully numb that area for a bit. I had many of these done at my LLMD, but many Pain Mgt drs do this also (although they like to throw in steroids aka anti-inflammatories).
Prolotherapy is another alternative.
The go it alone route - frequent bouts of a hard knuckle pressed into the knot. Do it till you literally can't take it - it's like a thumb war - sooner or later something's got to give. That spot will be sore, but the surrounding 'referred pain' should be gone. Follow up with heating paid, and apply any type of topical lotion containing Arnica (or other muscle relaxant).
To fix these going forward - you really need to address Magnesium deficiency through IV and IM. Orals will not get you back to normal levels.
PM with any questions.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
I thought I would die from the head pressure. Rifampin was what started to clear it (among other IV drugs-rochephin and flagyl
Still get it periodically-especially when pressure is dropping but much much less with treatment
Posts: 298 | From usa | Registered: Aug 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yes, I suffer with this a lot. It is one of the symptoms that ruined my life.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
My first and worst symptom, along with the imbalance. It is never absent. Years later it now sometimes turns into intense pain on top of the pressure. I can deal with all the other pain in my body, heart issues, anxiety etc., but the head thing has taken me to the very edge many times.
I was praying to read something in this thread that would give more hope to find an answer for this thing. Has anyone gotten rid of it?
Posts: 219 | From pacific nw | Registered: Jun 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
See my post above
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Have any of you had a SPECT scan? Pressure in my head has been the most constant symptom I have had. My scan showed a lot of inflammation. Indicating that it's effecting my brain. I just started IV Rocephin last week. The pressure has actually gotten worse, but I assume this is a Herx reaction.
Acupunture has seemed to help a little. I'm also starting a lower carb diet. Only veggies and fruit for carbs now. I suspect that will help also. Also cutting out diet sodas, etc. Nothing but water for me!
-------------------- Lyme IgM: +18, +31, +34, +39, ++41, +58 and 83-93 is Indeterminate.
Currently pulsing IV Flagyl and Rocephin. As well as daily Mepron and Azithromycin. Posts: 34 | From New York, NY | Registered: Mar 2010
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What you discuss makes much sense to me. I, long before any of this lyme business was considered, went for some trigger point myotherapy (non-invasive) treatments. They were helpful, but the benefit was short lasting. Basically the therapist did what you mentioned, put pressure on the "knotted" areas that would cause referred pain and "broke them up".
IM or IV Mg is probably something that should be explored with my doctor. Would Magnesium Chloride (or whatever that transdermal stuff is) be more effective than oral Mg? Also, suppose that bruxism contributes to this pressure, pain, and spasms. How do we stop ourselves from doing that and what part does lyme or co-infections play in that equation? Applying that logic, none of this gets better until other problems (like bruxism, posture, etc.) are addressed and resolved.
I've had an MRI and it showed nothing conclusive that would cause this pressure and pain. That's a good thing I suppose, but it does not help rid me of this problem.
What does a SPECT scan (mentioned by berneck1) show? What's the purpose of that scan?
Posts: 56 | From Down Here | Registered: May 2010
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posted
what is SPECT scan?
Posts: 158 | From pittsburgh | Registered: Aug 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Scrappy
To get immediate relief, I would suggest Trigger Point Therapy - injections of lidocaine over physical manipulation type therapy any day. The relief is immediate, and if you've suffered from this problem endlessly like I did (to the point that my hair literall hurt), you'll do anything to make it go away right now.
Unfortunately, not everyone has access to the injections (at at times myself included, depending on when I one or more of these would occur). Arguably, in the beginning the effects were not permanent, but with repeated sessions I had success.
If the cause of the spazms is bruxism, a case could be made that this is caused by parasites. Gael has put up tons of info about symptoms of them, and teeth grinding at night is right up at the top. Do a search here and you will find tons.
Mag Chloride not only is a vaso-dialator, it has the added benefit of anti-inflammatory properties so may help on 2 fronts if in fact low mag is the cause of your issues.
A SPECT scan shows blow flow in your brain and is useful in providing concrete evidence that you have neurological issues caused by blood flow. http://www.mayfieldclinic.com/PE-SPECT.htm
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Number one symptom everyday right between eyes over eyes...
Mine doesnt feel deep like brain pain... but more seems to be associated with my jaw. When I have my acupuncture apts the pressure is much less.
Im still debating getting my wisdom teeth pulled. To see if it helps with the pressure.
Posts: 286 | From St. Louis | Registered: Dec 2009
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