djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
anyone else have this symptom? if so how long before it cleared? ive had it a while now and its driving me nuts it varies in degreee but its always there. i have yet to hear of anyone but california lyme and a few others that have this. my llmd thinks it may be from coinfection, which he is going to start experiementally treating me for soon.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
my sister's last MRI showed a chiari...where brain kind of "leaks" into spine... it is usually congential, but hers is inflamation due to lyme.
Her other MRIs from few years ago didn't show this.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
When I treated babs that horrible head pressure and pain lifted.
Posts: 1603 | From ny | Registered: Aug 2006
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Yes I have this really bad. Ive had it for 15 years. The ducks just gave up on trying to figure out what it was a long time ago. Then when I finally got diagnosed with Lyme and
started abx it went away within a month. I was on abx since Sept then my llmd pulled me off them to put me on Choleterine. That was a
little over a week ago. Well yesterday that feeling started again. It's like pressure in your head, like my brain is too big for my
skull. And I can hear the blood rushing to my head. It's scary.
posted
Yes it is one of my main symptoms. It started a year ago while I was on an ABX break. I varies between just light pressure to a full headache. Then I treated with ABX and it slowly subsided over a period of 4 or 5 months, but came back again when I stopped ABX. I am now treating with Rife for 2 and 1/2 months and it increases when I herx and then subsides to almost gone when the herx clears.
Posts: 22 | From South Jersey | Registered: Jan 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
That is one of my husband's worst problems. Terrible head pressure, as he describes it.
It got a lot better when on flagyl, but has returned like a beast since he started the Rifampin. I hope it means that something is "happening" with the Rifampin, and that the pressure eases soon.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I relate it to Babesia.. and the Mepron/Zith took it away. It is back now.. has been... after being gone a long while.. and comes in almost monthly cycles. The longer I ignore it.. the more the days in the pain cycle increase and the less good days I have.
If I let it go without treatment... it nearly consumes the entire month... so there are no good days.
Hey Boom... I have heard of others.. Lymetutu is one.. who got bad headaches on Rifampin... just so you know.
I beleive we have alot of the same symptoms. It seemslike everytime you post something i can totally relate. The only co-infection i have is mycoplasma but im considering trying to treat babesia herbally even though ive never tested postive for it. For me the head pressure and brain fog sorta go hand in hand. When i have bad brain fog i usually have that sort of heavy head feeling. Id be curious to find out how you respond to treating babesia if you do that. Keep us posted.
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thanks guys-
jocus- ill definitleyt let you know. it sucks big time. the pressure/swollen brain feeling is always there, just in varying degrees. brain fog for me has been present for me for months. i cant remember the last time i didnt have it. its going to get better though. btw, whos your doc? mine will treat all co-infectins w/o tests. hes the best. i will definitley keep you posted. are you going to treat babs with buhners protocol?
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I've have the brain swelling for years....used to make me sleep all the time. It's like extra volume between my ears, sometimes head feels like it's gonna explode....sometimes it moves down to my heart and feels the same way there.
Encephalopathy from the lyme ... It has gotten somewhat less frequent over the last year during treatment.
posted
I have had a chronic headache/head pressure since November of 2005 and it has never gone away. All the ducks have given up on me and the MRI's show nothing...
I guess I can count on having a chronic headache until my lyme is healed and completly gone...
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Cobweb
Unregistered
posted
Yeah- I know the feeling-like someone's blowing up a balloon in my head. Other times it feels like there's a vice around my head that's getting tighter and tighter.
I have asked non lymies if they could "feel their brain"-the answer's always "no" with this sideways glance that implies "are you nuts?"
Anyway-I have learned to surrender to the feeling and go to bed-I usually feel better in about an hour. If I'm not home-say, at the sidelines of a soccer game, I just sit there feeling detached from the world.
posted
I have this pain as well-mine is from the muscles in the neck -goes up the back and wraps all the way around my skull-once it starts-takes forever to go away-the best thing I have found is ultrasound and tens on the muscles to relax them-a physiotherapist may be able to help-give it a try!
diana
Posts: 202 | From vancouver, canada | Registered: Jun 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Husband holds the front of his head, when his is really bothering him. He has never described it as a headache, just "pressure".......
It just makes me so frustrated to see him suffer, and wonder if we are doing the right things to make him better.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
i have this very bad and daily! head feeling like its going to explode and many times with ears so full and aching too and head feeling like there is a band wrapped around getting tighter and tigher, sometimes pain meds like oxycontin or vicodin help, sometimes inhaling oxygen helps too, radha
Posts: 392 | From New York | Registered: Dec 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
has anyone on this post tried hyperbaric and if so has it helped?
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
i have had the head pressure, only on the left, for 2 years. yes it feels like you can feel your brain pushing against your skull.
there was several times in oct 06, that i actually "passed out", "fell asleep" and woke up 2 hours later with total loss of time. very scary!!
the thought was babesia or some other co-infect. but i herx on such minimal doses of abx that i never got to the mepron.
ended up having sepsis and was hospitalized for 3 weeks. it's always something.
i have found ice packs and 30mg morphine help take the edge off. going to sleep is always a help, if you can.
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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posted
[QUOTE]Originally posted by diana: [QB] ...the best thing I have found is ultrasound and tens on the muscles to relax them-a physiotherapist may be able to help-give it a try!
Please tell me more about how ultrasound can help and what is "tens".
My daughter describes her pain much like yours, starts in the back, neck area and comes over her head to the eyes. Feels like someone is stabbing her eyes and ear drums. Sometimes feels like a band around head, others like a vise.
She found some relief with myofascial release and chyropractic care, but both only helped some and for about a day. Our health insurance limits these visits.
Some pain meds help, but she needs really strong ones and can't function with or without them.
She had an ocipital nerve block about 6 weeks ago. It just now wore off. We are trying to get another one quick. It has helped the most, only now more of her head is in pain. Don't think it is related to the nerve block, she began to relapse with babs I suspect a few weeks ago. Pain did get beter after babs treatment.
Thanks, MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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posted
I am not exactly sure how the ultrasound works but it is used by many physiotherapist for relaxing muscles. Same thing with a tens unit. I tried something new today that I think holds great promise for helping with my pain -called IMS -the muscle relaxation was immediate and the results are cumulative-you can check out the webiste at www.istop.org
Diana
Posts: 202 | From vancouver, canada | Registered: Jun 2005
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posted
I dont know how to find the link to the discussion but if someone can do a search of lymenet for "pseudotumor cerebri" you will find it is a common problem with Lyme treatment --especially for those taking doxy.
YOu can also do a google search for Pseudotumor cerebri and Lyme and get loads of info....
It may or may not be the problem, but it is worth investigating since it can cause permanent blindness if left untreated.
Dawn
Posts: 222 | From USA | Registered: Apr 2006
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posted
The head pressure is my worst symptom. It's what keeps me in a wheelchair. Any amount of standing or sometimes just doing to much causes me the most severe pressure headaches. My head then becomes really foggy and I feel like I'm going to die. Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I don't even what to talk about it...i really dislike it and consider it my most difficult symptom to deal with.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
The head pressure is hard to deal with. My gets worse a couple of times a day, but it doesn't every really go away. I've been on antibiotics now for three months and it seemed to let up a little about a month ago but it's back full force now. I know what you mean when you try to explain to the non-lyme. I tried to explain the pressure for over a year to doctors. All they did was refer me to psychiatrists.
Posts: 237 | From WV | Registered: Mar 2007
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posted
Yes, I had this very badly at the beginning of my acute onset. It would actually come in waves which would lead to seizure like things and sometimes convulsions.
It got better within the first year of treatment - but I was not on aggressive treatment back then. I am sure it would have gone away faster had I been taking stronger abx. I was just on the tetracycline then. But the herxes would make it worse, so maybe I would not have been able to deal with stronger abx.
Have faith, it will go away with abx and time! When it got too bad, antihistamines and decongestants helped me a bit. But I hated taking them.
Posts: 589 | From Rhode Island | Registered: Jun 2006
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posted
The pressure is usually not the result of increased CFS pressure as seen in pseudotumor afaik. most LE taps will be normal or near-normal opening pressure, and after two taps myself I still had the headaches even though a substantial quantity of fluid was removed.
In my experience, this is likely due instead to subacute inflammation of the meninges, and/or cranial nerve involvement, eye infection {virtually universal in late CNS cases} and possibly also boney involvement of face and skull. this symptom has been poorly studied, and very little is known about the involvement or treatment of any of the aforementioned tissues, other than that the treatment is very difficult since it is concerning difficult to reach tissues.
this is the most responses by far I've ever seen on this thread. it's comforting to know that I'm not alone in having to deal with this unpleasant symptom.
I often fantasize about plunging an ice-pick into my skull and have even half-seriously pondered sawing the skull open along the sutures as a means of relieving symptoms.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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I just have to chime in here. HBOT is pricey but there are alternatives. Please check out my web site. I may not be accessable or affordable for everyone but I try...
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Julia, in all fairness, your rates are reasonable. The place I went to wanted $200 per hour.
It's frustrating having to pay for 20% insurance increases & out of pocket treatment the insurer won't cover.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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I have to agree with you. That is why I tried to present the UHMS north east chapter meeting the fact that borrelia is a bacterial infection.
My focus was getting at least a few in the audience to realize that there are other infections that are approved by the UHMS why not lyme?
I was trying to open a "back door"
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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Cobweb
Unregistered
posted
Actually I had this pressure phenomenon prior to being diagnosed with Lyme. Since being diagnosed with Lyme it is intolerable whenever I try to take Moncycline or Doxycycline.
I feel like I'm between a rock and a hard place because if it's a herx caused by the antibiotics that's a good thing, but I feel like I'm going to die so I always stop taking the med that does it to me.
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posted
I had pressure in my head for three years before taking abx, which then of course, made it even worse.
All through 2006 on abx I had head pressure that made life not worth living. I thought it was part of the fog, but I think when you are in pain like that, there is only so much your brain can handle, I think now it caused less fog and more static.
My head pressure went away 3 months ago and hasn't been back yet/since. I had really just assumed I would always have it. I do think Malarone and Mepron helped it a lot.
gambler
Posts: 243 | From chicago | Registered: Dec 2005
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I'm amazed at how many of us describe the exact same kind of pain. I've had this off and on since 2000. it is the most unbearable of a list of symptoms - I agree! My year long horrible headache in 2001-2002 was what drove me to get a diagnosis. The first thing I was treated with after a CDC positive Western Blot was Ceftin. AFter two weeks of horrible herxing, I had a major pain break-thru. it was wonderful!
I've been in treatment now for almost 6 years. I have been on many different antibiotics. Almost all of them improve the head/ear/eye/face/neck pain to a huge degree.
A variety of modalities have helped me. Ultrasound and deep tissue work always help, but very briefly. Anti-inflammatories help as long as they last. By far, the biggest difference has been made by a Fentanyl patch. The difference in my quality of life jumped 10-fold thanks to the patch. It's the lowest dose, and i've been on it for 2 years now.
I tried injections into the neck, and that did not help me. It was Lidocaine with a tiny bit of steroid, and I got very sick for two weeks after the procedure.
Doxy herxing greatly exacerbates the pain - to an unbearable degree. So, it does sounds like the Pseudotumer cerebri syndrome - but I think it's inflammation caused by the Lyme
I read a book not too long ago by a neurologist on headaches. I can't remember the title! But, in essence he says that some people just have this headache syndrome, and he has found much success with treating it with the old tricyclic antidepressants like Elavil, Doxepin, etc.
I did try these in the beginning, and they did help, but the side effects became too unbearable for me. The dry mouth, drowsiness, and weight gain were awful.
Cymbalta - the new antidepressant and pain med has also helped tremendously. i think it's why I haven't had to increase the Fentanyl dose.
I know many are very reticent to use any type of opiod like a patch, but they are VERY SAFE. They are much safer than anti-inflammatories, and it is actually quite easy to taper off them if you have a smart dr. who knows how to do this. I see it as a temporary stop gap measure until a better solution can be had.
Living with that degree of headache 24-7 is just way too unbearable, and my pain dr. explained that this sort of chronic pain actually causes damage to the brain.
I also highly recommend seeking out an astute pain specialist. they can be extremely helpful!
Posts: 364 | From California | Registered: Sep 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
Look into Babs -- it definably will cause this --
After 6 months of Babs treatment Also -- All of my head problems are 99% Better -- took about 4 months for things to get better --
Now I only get headaches when I am herxing and they are not bad at all--AAAhhhhh -
Babs causes Many types of symptoms --
a couple symptoms that stick out are-
Low body temp - Check your Temp several times aday - Low overall the is sign of Babs- usually 94 to 97- sometimes lower -
Crazy Heart beat --
Night Sweats - full body or different locations--feet -head -
Symptom increase at night--
Insomnia -
Babs symptoms change alot -- new one pop up -old ones lessen (maybe)
Babs is Very Common --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Wow.......what a lot of people who have this problem. It's good to know that hubby is not alone.
Just hoping that everyone can get better!
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
I had the brain swollen, head exploding symptom on and off for years. The pain would often intensify right before having a neuropsychiatric episode. The essential oils and getting core synchronism treatments (similar to cranialsacral work) helped me the most. I also took some Chinese herbs, and high doses of niacin also helped me.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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posted
This has got to be my worst symptom, actually, it's the symptom that FINALLY pushed me to get a real DX. I landed in the ER with this when it first started (last month). My LLMD gave me Diamox which works really well, however it makes you pee like crazy@!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
encephalitis damnitall!!!!
well today its all really bad.
The weekend comes around and I always feel this. I think its because Im overwhelmed at all the things that I haven't done during the week.
SO I think its adrenals and HPA and yeast.
All this stuff
Posts: 2905 | From New England | Registered: Sep 2004
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posted
It's been just over a year since my Lyme symptoms started. I started getting the same head swelling that everyone is describing here around January/February where it felt like my brain was getting so large that it was pressing against the skull. That pain went away and got replaced with this odd head sensitivity. It feels like this really annoying substance is stuck in my head in certain areas. It can come and go very quickly and when I touch my head I can also trigger the same feeling in the area where I touch. It only seems to come about when I let go. So if I touch and leave my hand in place it is OK, until I let go. I've seen this described on another forum as sand being trapped beneath the scalp where it kind of feels like it is moving and draining down. ( http://curezone.com/forums/fm.asp?i=837014#i )
I also got a bump on the top back of my head, I think it is the location where as a baby your bones are not fused and later fuse as you grow. It grows and bleeds especially when I herx and then shrinks back down when things are not as bad. Right now it is almost gone because I let up a bit on my treatment as I needed my sanity back for a bit.
The other thing bothering me in my head besides the brain fog/tiredness is my ear canals are constantly swollen it feels like they are closing in. Sometimes it gets hard to hear because they close in so much.
Can any offer any ideas of any of these are signs of any particular co-infections or just straight Lyme? These aren't the only things bothering me just the things bothering me the most.
Posts: 526 | From NJ | Registered: May 2007
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posted
The one thing that helped with my headaches/pressure was diflucan. I took 200mg once a day for several months and had a hard time when I went off of it.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I get this awful feeling occasionally, and Advil provides good short-term relief.
Advil can be tough on your liver though, I understand, and also is not a recommended long-term frequent strategy for relief due to other side effects.
Its use can lead to stomach ulcers, and I believe has been implicated in cardiac issues (along with other NSAIDs).
Posts: 2557 | From home | Registered: Aug 2006
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posted
Head pressure and neck stiffness was an early and WORST symptom of mine. It remains to this day, but at times worse than others. I still have not found a reasonable explanation of it. I do know that it is very scary.
My pressure is in the back of my skull, behind the ears and close to the neck. Anyone have problems with this area of the skull/brain?
Posts: 190 | From BC Canada | Registered: Jul 2004
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posted
My pressure felt like someone was standing on my head and at the same time being squeezed from the sides and that my brain was too big for my skull! I also have blurry vision and a major stiff neck when this happens. It's really, really, REALLY scary! It feels really dangerous! I also get chest pains/pinching and really off balance/dizzy feeling. I will take swollen knees, ankles, fatugue ANY day over this!
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
anyone on this thread still have this?
i do! a year later still here....
anyone?
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
I think BART makes it worst.Mostly on the frontal LOBE part.You can not even open your eyes and your face or half of it is swollen.
I say bart and I had done things that hit lyme and babs and had no clue ( that lead me to get diagnosed with lyme and company) and my brain swelling ( even though I had headaches like that for a long time)....went to horrible pain.
Preasure and brain sweelling as you do not have enough room to keep your brain under your skull.
BART, BART to me.The more I treated bart ( also other coinfections ) but targeting bart mmostly ...the better my frontal lobe felt.
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Alv
Unregistered
posted
You all forgot about BART.
I think BART makes it worst.Mostly on the frontal LOBE part.You can not even open your eyes and your face or half of it is swollen.
I say bart and I had done things that hit lyme and babs and had no clue ( that lead me to get diagnosed with lyme and company) and my brain swelling ( even though I had headaches like that for a long time)....went to horrible pain.
Preasure and brain sweelling as you do not have enough room to keep your brain under your skull.
BART, BART to me.The more I treated bart ( also other coinfections ) but targeting bart mmostly ...the better my frontal lobe felt.
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posted
head pressure and pain have been a symptom of
mine for over 7 years. My other symptoms go
back to childhood.
hve been in treatment for over 5yrs.
what i have found is that this symptom got better
after initial treatment...then became
dibilitating again. Then abx was increased, same
pattern. Then different agx was added, same
pattern. Now 3rd abx has been added, so far it
has been better. No longer falling, blacking
out or having seizures. I think that I have
multiple coinfections that we are finally
figuring out. I have no proof, but I believe
that when one infection is being targeted and
killed off, it gives a coinfection room to
expand and take over. I think that is why
this works for a time for me and then we need
to change the treatment. If I have this right,
I think that I have the rest of my life to
fight this fight.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Shosty
Unregistered
posted
My daughter had this for 2 years while in treatment. We blamed it on Lyme. But it turned out to be due to food allergies (esp. dairy) and after being in so much pain that she missed a lot of middle school, the headache/swollen feeling went away in two days when she went off those foods. The antibiotics themselves can cause this, via yeast and "leaky gut" which then cause the food allergies. Just a thought.
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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