seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I try and try to do anything, but fail miserably exercising. I'm a big person and tried to lift 5 lb weights (used to curl 50+ lbs per arm). Upon ANY weightlifting/cardio, my head squeezes.
It's unbeatable and impossible to ever break a sweat. It literally makes exercising impossible. It's scary too.
Along with my head, my jaw/neck lock up some too. It's not the fatigue that stops me, it's this.
I've had endless brain MRIs with and w/o contrast, CT scans, x-rays, EEGs, etc. All normal.
I'm always so scared of Arnold Chiari formation issues misdiagnosed or some other arterial disease. I don't hear a lot of people debilitated from this symptom, especially when trying to exercise.
The only two suspected diagnoses I have are Lyme and Babesia. IF this is a classic symptom of one of these illnesses, which one would you guess? If it is, does it most likely take IV Abx to stop this process? I assume it would be pretty severe neurological involvement to cause this inflammation.
BTW, any chance a chronic EBV infection could cause this symptom?
Other ideas like heavy metals?
I'm DESPERATE.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
A friend of mine had exactly this and she had both Lyme and babesia. There's no telling exactly which infection it is.....symptoms overlap too much. But it sounds like you should look into treatment?
Posts: 3528 | From US | Registered: Apr 2007
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I have a lot of head pressure. It seems to be exasperated when I am lets say exercising hard or stretching and putting my head in a downward position. It feels as if my head could explode from the pressure.
My MRI's came back normal too.
I also have pulsatile tinnitus 24/7 on the left side and I get buzzing(kind of like a vibration feeling in my head from time to time)
It feels like there is pressure in there that just needs to be released.
I often wonder how common this is in Lyme????
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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posted
About 8 years ago, I got a sudden, severe headache when I exercised. Nothing showed up on an MRI.
The neurologist gave me a prescription that I could take before I exercised to see if it would prevent it. I don't remember what the medicine was, but I see that Indocyn is used for this sometimes. He said to do it for a week or two and then try to exercise without it. In my case, I didn't need it any more.
All this was before I had or at least knew I had Lyme, though. I was getting migraines before this, so it probably was part of it.
My daughter was a gymnast until she started getting Lyme headaches. Then, she couldn't do gymnastics without it making her head worse.
Posts: 984 | From US | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
CD57, well did your friend rid herself of that symptom with treatment? This still is an alarming symptom to me. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymeinhell
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Member # 4622
posted
Could it be you have trigger point muscle spazms on the back of your head? So what you feel is actually a physical pulling? I say this because of the fact it spreads to your jaw area.
Take a knuckle, and poke around hard at the bottom or your skull. Find any painful spots you didn't know were there? Typically the spots themselves aren't painful unless you jam something into them, and what you really feel is the referred pain across top of head, jaw, through ear. Physical activity will typically reveal the pain and pulling.
Been there. Done that.
The spasms do NOT go away on their own. They're typically caused by Magnesium depletion, which is caused by Lyme. And no amount of orals will restore your mag levels. IV and IM mag is needed to restore your levels. A series of Trigger point injections (of lidocaine) is needed to get rid of the spazms and restore the blood flow to those areas.
-------------------- 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 have had head pressure since this started 3 years ago... it is hard to describe, but it is there 24/7 even when I sleep, hard to even say it is just PRESSURE because it is so much worse than that... It is the most debilitating thing, and I cannot function because of it.. 3 years and i ahve been to MANY MANY doctors and had many tests.. nO one knows what it is....
Living like this 24/7 is not living... I am mostly couch bound and certainly house bound for 3 years now... it is terrifying to have this.. I cannot cook, clean, walk much, take care of my own children, or do anything really for myself... I hate it.
So if you find the answer.. please pass it along.. because there is not much longer that I can live with this...
-------------------- "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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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Lymeinhell, my whole head hurts a lot when I press with my knuckles, especially on the back right side.
I've done lidocaine injections in my shoulders and they didn't help unfortuntely. Do you mean directly into your head?
My RBC magnesium levels are very high normal range. Are you saying this means little? I've been to all kinds of alternative docs / LLMDs and not one had any education/inclination to treat me with IM/IV Mg. Where do all of you find these docs willing to do this? I researched it so much and they just looked at me with a deer in the headlights look when I discussed it.
My LLMD wanted to put me on very high doses of Rx Potassium to help muscle spasms. My RBC levels of this mineral are normal too. I didn't do it because he had no real justificaton and it has risks. I didn't trust his intuition there at all. Clinical Dx only go so far IMO. He diagnosis so so many conditions clinically that it spins my head at times.
I take oral Mg...tried Carlson Labs Mg Glycinate - which my LLMD says is golden, Mag-Tab DR - MgCl, Mg Citrate powder. None made any real improvement.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
As you well know, this is my main sx too. for over two years now, everyday...I also have the base of the skull right sided pain continiously.
Shandy and I share identical symptoms.
I think it may be babesia, but can't say for sure. I know you are looking for an answer and relief for your sx......
Cranial ST helps but relief is short lived and cost prohibitive as it would be needed every 2-3 days....
If you find an answer....please let us know!
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I have Chiari Malformation (along with Lyme of course) and my first symptom was horrible pressure headaches and visual problems with exercise - running, biking, swimming, lifting etc....It got to the point where even sneezing would cause problems.
It took a few rounds of MRI's to get diagnosed because if you do not meet the standard diagnostic criteria of 5mm herniation most Radiologists will not even mention it.
MAny people have smaller then a 5mm herniation and it still causes symptoms. Mine is 4mm and even with it being smaller then standard 5mm it causes a restriction in my CSF flow. That was found by a seperate MRI called a CINE Flow.
At any rate, if you are worried about CM your best bet is to have a chiari specialist look at your MRI's to see if there is a herniation or not. There are a few places that will evaluate your films prior to scheduling an appointment.
If you want more info. PM me. TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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seekhelp
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Member # 15067
posted
Trigal2, did you treat it? Are you better?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Darn Feelfit, I just realized what I should've done. Marry a CranialSacral therapist. If only I would've known. lol.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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glm1111
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Member # 16556
posted
I had nonstop pressure in my head for 2 yrs when I first collapsed back in 1983. I couldn't take a deep breath for that time either. I had to wear a bite gaurd for severe TMJ.
I didn't know I had Lyme so no treatment because all bloodwork was okay. When I was finally dx in 1999 my LLMD found a bullseye on top of my head.
I could only rest and eat well. Excercising made it worse. The pressure calmed down on it's own, but not the other Lyme symptoms. Looking back, I now realize this symptom was from severe neuro Lyme.
Juicing and eating an anti-inflammatory diet helped also. Somnetimes the body just needs rest and not heavy excercise.
I walked when I could and slept a lot!! I also tested positive for EBV,Parvo and several other viruses as well as babs, bart and elichia (hme)
Remember it's Lyme complex and not just one infection. There is no quick cure, and I am still getting rid of parasites after 3 yrs, but I am much better.
From my own observation and experience, I believe these infections are from the top of our head, going thru the entire digestive track and disseminating into other organs from there.
Focusing on healing the digestive track is KEY. Clearing out the parasites and worms and other microbes that help harbor the bacteria will lead you back to health. It's like peeling an onion.,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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lymeinhell
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posted
Seek, yes, I meant in the head if that's where they are. I had so many that I would sometimes go home with my head completely numb. The relief would at first be temporary, but after several series every 10 days, they were, for the most part gone.
I'll share some wisdom my wonderful dr shared with me - A muscle spazm is like a thumb war. If you press hard enough, sooner or later, something's got to give.
So when the occasional spazm would pop up (oddly after 8 hour vacation drives - I'm thinking it's the wearing of sunglasses for hours on end) and I would be out of reach of my LLMD, here's what I would do:
Have my spouse jam his knuckle as hard as possible and as long as possible into the spot that would hurt. Or do it myself if necessary. Like you, the spot itself wouldn't hurt, but I would notice pain elsewhere (i.e. jaw pain, or pain behind my eye, or over the top of my head).
I know this sounds sadistic, but after about 30 seconds, the only thing that hurts is the spot where the spazm is - but no more referred pain, which to me, is much more painful (and sometimes scary because you imagine all kinds of stupid things that could be wrong with your 'brain').
I would also apply a muscle lotion with arnica (antispasmodic), and rest up on a heating pad afterwards if necessary.
If your mag levels are ok now, why not try the trigger points again until they are gone for good, or try prolotherapy. As I said, they don't go away on their own. Perhaps they will stay away once you take care of them properly.
-------------------- 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 have really bad head pressure from any kind of exercise too. But then it sets off a whole chain of symptoms. It's frustrating!! I'm not sure why it happens, but I've had it since I got sick.
-------------------- 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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posted
The standard surgery is decompression surgery and it is meant to prevent the progression of symptoms and restore the flow of CSF in and out of the brain. Varing results of course.
I had spinal surgery last year to try to correct it...long story but it was not the correct procedure and it only made matter worse.
I am trying another long term course of abx to see if that help my symtoms - still not sure what is caused by the chiari and what is caused by the lyme.
If I do not get feeling better then I am a candidate for the decompression/head surgery...but if I do not know if I have it in me to undergo another major surgery.
Luckily my NS is lyme literate and works closely with my LLMD..... TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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posted
I had this a few months ago. Came and went. Especially with exertion and lifting heavy weights or furniture. Mine seems to be vagal related. Intense pain in the head walking upstairs, etc...Felt like I was going to have an aneurysm.
In my case i started taking lumbrokinase and baby aspirin. Also started Bicillin shots. It went away. I am not sure which helped.
I would say agressive lyme treatment would help and would pursue that. Also check cardiolipins and check for thick blood. Maybe an MRI of the spine and head also just to be sure.
Be well.
Posts: 770 | From USA | Registered: Jul 2006
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sutherngrl
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Member # 16270
posted
Sounds lyme-ish to me! Brain swelling.... which is common with lymies.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
My first symtoms were neck pain all the time and headaches.I had Bowen Therapy ( it's like acupunture without the needles)which helped the headaches but increased the other Lyme symptoms. Which is when I started thinking I had more than a sports injury. MRI clean.
When I would exercise after 10 minutes I would get a headache. Heat causes die off. Some say use a dry sauna, which I tried. Again after 10 minutes I would have a terrible headach but if I could stay a little longer it would get better. I have been meaning to try that again.Please check with your physicians.
Recently I did have some physical therapy and I was walking outside. I could walk for an hour and still make it thru the day. Some days were harder than others. Physical therapy we focus on light weights working every body part for 60 minutes, which is what Dr. B recommends every other day. It helped my energy levels during the day.He does not suggest getting on a treadmill for an hour.
I still do on my own but I am not as consistant as I would like to be. I know the feeling about the strength. I cannot lift anywhere near what I used to and still have a stiff shoulder that will only do so much. My schedule became to hectic and I did not stick with PT.
I also have Babesia which is know to cause headaches to. The best thing for my headaches is Artemesia. I take it thru out the day and it usually keeps it at bay. It is my asprin(golden)
I do not have the jaw pressure anymore and rarely have the face tingling and pressure.
-------------------- HAVE FAITH Posts: 27 | From Phoenix | Registered: Nov 2009
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