seekhelp
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Member # 15067
posted
I just can't figure out the cause or meaning of a particular symptom I have. My neck feels super swollen on the sides and won't release. Right under the ears on both sides, it feels puffy. It's tender to the touch. NOTHING puts a dent in this.
When I lean forward, the pressure escalates x 5. My ears are very, very full feeling. My jaw is SO tight. I can't even reach above my head or lean forward at a computer chair without further aggravating this issue.
If I press slightly hard about 1 inch under the ears on my neck, OMG.
Many previous CT-scans show no lymph enlargement/issues.
I take Red Root Tincture....no help. Baclofen (muscle relaxer) now provides little to no help. Magnesium doesn't do a damn thing. I take Mag-Tab SR. Potassium nothing.
I'm desperate. My face even twitches at times due to the pressure.
My RBC Magnesium blood tests are always high normal and last one was actually above normal a bit. Never a sign of magnesium deficiency via blood work.
I have been told over and over again Arnold Chiari Malformation is not an issue. My cerebral tonsils are extended 3-4 mm on a cervical MRI. I saw a world-class specialist a few years ago who did standing MRIs and CINE Flow MRIs and said it's not the problem. I recently had another cervical MRI last Friday and waiting on results.
I may have mild bulging dics in my cervical region, but never enough to supposedly cause symtoms. WTH is wrong with me? Brain swelling seems like the only plausible explanation given my testing results/history.
Anyone have a damn clue? What choice does someone like me have at this point but to undergo a spinal tap and look for increased intracranial pressure when this symptom won't leave?
Is there even a "chance" mold exposure could cause this? Carpel tunnel cause this?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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map1131
Frequent Contributor (5K+ posts)
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posted
I wish I could ship you a great lymph drainage person. Once a week for 8 weeks and you might have some relief.
Many people swear by cranal-sacral work, but it made my neck and head pressure worse. But many say they get relief from this type body work. This is gentle work but I didn't find results appealing or gentle for me. Maybe it would help you.
I would guess you've tried some chiros? Haven't found one you trust to rework some stuff. I don't like to be snapped into place.
There's something about that process that makes me more tense and frightened.
Finding some of these people that are experienced is even harder. Sometimes just going thru your medical history over and over again is enough to say forget it.
My massage lady works one mine for me. But I do alot at home with essential oils and such giving myself relief with massaging myself and using oils known to get things moving along in the lymph.
My ears are unhappy too. I thought it was bart but some reading I did last night got me thinking fungus things or even a strep bacteria.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
This was my number one lyme symptom that finally drove me to investigate lyme almost two years after getting bit by a tick, its also one of the last symptoms to show up it seems like. After i dove into lyme world three months ago and have been treating with abx and teasel root, my neck issues resolved really quickly, only occasionally bothers me. So i would say try teasel if you havent and just keep treating lyme. Hope you get relief soon!
Posts: 113 | From south dakota | Registered: May 2011
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Tickbiter- where is a good source of teasel root and what sort of dosage are you finding relief at?
Thank you
Posts: 47 | From Texas | Registered: Oct 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have never tried Teasel Root. Heard of it, but don't know much about it.
I got my cervical MRI results today. I'm absolutely astounded it's absolutely perfect except for some very mild bulges from C4-C7. No changes from before.
How the hell can it be normal when you're neck is so stiff you can't function, arms tingling like crazy, etc.? It's beyond explainable again. Either I'm losing my mind or.....
I had to stop using a power garden tool today because the pressure in my neck was so intense. it scared me. Both hands and arms were tingling terribly. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Not sure if this will help, but it won't hurt you to try some cleavers tincture. Eclectic Institute makes a very good extract and i purchase mine through iherb.
Cleavers is a gentle herb and is specific for clearing lymph, especially with ear and neck involvement. It also helps the body in other ways.
Try taking some a few times a day in warm water (let it sit in the water for a while before ingesting so the alcohol dissipates.) This is what i'd do.
ease and peace ~
Posts: 164 | From North America | Registered: Mar 2009
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map1131
Frequent Contributor (5K+ posts)
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posted
Not losing your mind. I certainly would find someone and I'm sorry but it's not going to be someone in the traditional medicine category and paid by insurance company.
I would suggest you not use power tools. That's not in your best interest. I wouldn't trust myself with a power tool. No telling what I would do?
Hand trimmers on a cloudy cooler day for one hour here can make me a wet noodle. Power would have me buzzzzzzzzzzzzzzzzing.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Riverspirit, have you tried both Cleavers tincture and red root tincture and found the first to be better? Thanks for the tip.
I guess the real issue is if a CT-scan/MRI does not show lymph enlargement, why does it feel like it? One would conclude it's muscular in nature OR the possibility remains of increase intracranial pressure, correct? It's all so confusing. Why would leaning forward cause such intense increase of pressure?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
@ seek and tiredmom, i ordered my teasel root from ladybarbara.net, you can find her email address there and then she uses paypal from there. I've heard of a site called jeans greens having teasel, but lady barbara uses dipsacus sylvestris, which is supposedly better for lyme. Check out her story on her website, then get some teasel from her asap! I started teasel about 3 weeks after first starting abx, and i worked my way up from 1 drop 3x a day up to 3 drops 3x a day...it literally made a difference in two weeks i started feeling better. I have been taking it for about 3 months now and while i don't think teasel will get rid of my lyme completely i know i wouldnt have made this much progress without it, i feel almost normal and normal feels so good! take this from a guy who had previously put no faith in any kind of herbal or natural treatments.
Posts: 113 | From south dakota | Registered: May 2011
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posted
Do you have Ear problems ?? Do you have thrush problems ??
I will answer with my opinion if I know these.
Al
PS. Chiari with 0 has happened as well as Cervical stenosis
Posts: 789 | From CT, | Registered: Jun 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Al, I have no documented ear issues, but always feel off-balance, ear pressure/fluttering sensations. ENG test was normal among others ran by by ENT.
No thrush problems I'm aware of. My LLMD and other docs never commented on tongue issues.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
seekhelp ~ i use both cleavers and red root according to what muscle tests right for me in the moment.
I do feel that the cleavers helps with lymph issues, sore throats, ear stuffiness, etc. I like how gentle it is.
My own practice is to not get too too wrapped up with the "whys", as these illnesses are so complex, it can muddle the brain even more trying to figure every discomfort out.
It's not that i don't "go there" mentally, but my observation is that peace of mind is of primary importance to me. When i get so spun out in trying to figure some of the pains and strange sensations, it can really tip me over.
So i keep coming back to the moment, to just this breath....
we each have to find our priorities, and mine is as much serenity as possible.
Trusting that your body has much wisdom, and with gentleness and clarity, things will shift and change toward balance.
Posts: 164 | From North America | Registered: Mar 2009
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posted
Seek, I also have had all the tests you had, IE, MRI, CT., Cine MRI, Cervical herniation at 3 disc's. I had surgery in 2004 . Unfortunately it didn't help. Later an abnormal brain stem response test was discovered . This indicated an inflammation of the brain stem (Which is at the base of the skull) This could cause the neck pain but no one will say this for sure. I also have severe Candida (Thrush) into my nose, throat, ears which radiated to my neck area adding to the problem. I did at one time ware a soft cervical collar and a few days later the pain was gone . It returned after I went back to work.
Inflammation of the brain stem is my current best guess. At this point I would stay away from surgeons; They don't get paid if they don't cut.
Posts: 789 | From CT, | Registered: Jun 2006
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posted
Thx for the info, everyone - I have constant neck issues too, for which I get constant chiropractic care - C1, C2, C4 out can cause a lot of the symptoms mentioned above. However, my adjustments do not hold. I'd like to learn how to make that happen.
Seekhelp, leaning forward puts a lot more tension in the neck, from having to deal with the weight of the head. That's why posture education always teaches putting the head directly over an upright body, not going forward.
If inflammation of the brainstem is potentially causing symptoms, then how is that addressed? Antibiotics, herbs, anti-inflammatories?
I know that I am treating my brain, since my prolactin count is dropping. I take clindamycin abx, mangosteen juice, noni juice and grapeseed capsules regularly. The latter three are anti-inflammatory.
Posts: 13116 | From San Francisco | Registered: May 2006
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~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Never pab. I've had more tests than most could imagine, but never a lumbar puncture. Well, I did have a myleogram once, but they were injecting dye, not trying to diagnose anything.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I have the same symptoms as well.
I also have chiari malformation - 10mm w/ restricted CSF flow. But here's the kicker.
Last year I had Posterior Fossa Decompression surgery w/ duraplaty and C-1 laminectomy. Post op CINE Flow showed normal flow pattern established. So why the heck so much pressure still in my head and now my neck! Feels like internal strangulation...even if I press on the front of my neck for a gentle massage it feels like the blood flow gets cut off to my head and its going to explode.
Well now a year later and either new infection or flare up of an old I am having all the symptoms you are describing - all of them. Don't know if it is the c.m. causing problems again or the lyme.
Sounds like such classic chiari and lyme symptoms and it sucks when you have both and do not know what is coming from what.
Wish I had more to offer you..The only thing that does help slightly is allergy meds - god knows why...for me I think I am still reacting to the bovine dura patch in the back of my head..It seems to never end...
I see the NS tomorrow and hope for some answers and am back on abx.s...
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
A lumber puncture is the only way to test for pseudo-tumor cerebri.
Do you have pain or pressure in your back when you have the head pressure?
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
To add to pab's response; Alot of NS will want to do an opening pressure while sitting up as opposed to laying down if they suspect an issue with a leak or other CSF flow problems as seen in Chiari Malformation.
That is what finally diagnosed my CSF leak from my dura patch. I was fine laying down and openeing pressue was low-normal but when I sat up opening pressure dropped way too low.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Neck stiffness has been a constant for me over three years of work on Lyme and co. Even while on Rochepin. But I have felt relief in recent weeks while on pulsing Coartem and ramping A-BAB.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Not pain per se, but usually intense pressure in my mid to lower back. It's like a sensation I need to stretch the muscles so badly, but when I do it never provides any relief.
I got major head pressure on Doxy so that's why I too wonder about pseudo-tumor cerebri. I feel like it must be ruled out.
JMB, based on my readings, I'm certainly not ruling out Babesia as a cause. I have tried Coartem, Malarone and a few others, but never got huge relief. I did feel some significant improvement after my first 3-day course of Coartem for a few days, but never again. I get reactions (high heart rate, anxiety and more), but never huge gains. I have a positive Babesia WA-1 titer IgG from LabCorp (highest was 1:2,048).
quote:Originally posted by pab: A lumber puncture is the only way to test for pseudo-tumor cerebri.
Do you have pain or pressure in your back when you have the head pressure?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
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posted
This is kind of scary. These symptoms sound familiar:
I have had a recent echo and nuclear stress test that were OK according to my cardiologist, but...
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Sammi
Frequent Contributor (1K+ posts)
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posted
My stiff neck and neck pain has been from Babesiosis. Before I was diagnosed, my neck was so bad that I could barely turn my head.
Posts: 4681 | Registered: Oct 2000
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....don't forget....if you've been on a lot of antibiotics for the Lyme treatment, a lumbar puncture may not show anything as antibiotics can mask other things. They are now telling me I must be off antibiotics for 3 weeks to do any kind of culture at all. My PCP is from #1 Anti Lyme group of MA! (LoL!) (They are angry that I am still on antibiotics - insist if I had Lyme antibiotics would have killed it long ago.)
Anyway, (sorry I got sidetracked) Just don't want you to go thru a Lumbar Puncture while on antibiotics just to have them say: "Well, LP didn't show anything, but it's likely because of all the antibiotics you are on!"
Posts: 348 | From MA | Registered: Dec 2010
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map1131
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posted
Seek, we've not agreed much on certain issues, but we do have alot in common.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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