neck stiffness and head pressure

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gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/13/2009 9:37 PM (GMT -6)   
i have read that neck stiffness is one of the first symptoms of lyme's. i did not start experiencing neck stiffness for about two years after i had been sick. but now it is unbearable. i feel like there is constant pressure in the back of my neck, and the creaks i hear when i talk will drive me crazy.
i am wondering if one would expect this kind of symptom to be one of the first of lyme's, and not something to appear a lot later???

i am also wondering if those with neck stiffness have also experienced unbearable head pressure? i sometimes get this pressure, usually in low pressure and humid climates, and i can't believe i haven't keeled over dead yet from it. it is soooo severe, and it feels like blood rushing to my head. i can hear and feel the whoosing in my ears. i can't stand it. it will last days sometimes. i am wondering if anyone else experiences this?

i have NO answers to these symptoms - like what they are, what is causing them... i am very concerned that my brain is inflamming or that my blood vessels are really messed up, causing the blood to just pound in my head. not really sure, but it is such a severe symptom, i can't imagine that it's not pretty serious.

Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 3/13/2009 10:10 PM (GMT -6)   
Gracietiger: Have you ever been tested for hypercoagulation? It is common in Lyme and some auto-immune disorders like Lupus. It can cause that "swooshing" in your ears because the blood it too thick and has to work harder to get through the blood vessels. Sounds like it could be that when you mention the blood vessels. Your blood vessels are also involved in migraine. I believe what you want to ask for is a fibrinogen test to test for hypercogulation. D

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/13/2009 11:02 PM (GMT -6)   
hi dowa, that is a great suggestion. it's funny, because when i complain to my boyfriend about this symptom, i always say it feels like my blood has turned into tar. like it is too thick to get through my blood vessels. but it seems strange, then, that it would only be in my head and neck. and sooooo severe.

i just now read a little on hypercoagulation and the info i have read so far says that the main symptoms are fatigue and brain fog. i have not found anything to suggest tremendous head pressure and whooshing are also symptoms. i will have to find a doctor to possibly address this suggestion though. thank you so much.

scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 3/14/2009 12:36 AM (GMT -6)   
Gracietiger, I'm sorry you are experiencing this. I also did not get the neck stiffness until a few years after becoming ill and the swooshing in my ears has been driving me crazy. I need to keep the sound machine on at night because it keeps me awake and sort of freaks me out a bit. lol I usually don't hear it when I'm sitting up but sometimes do when I tilt my head a certain way. When I'm laying down it's really bad. I thought it might be due to high blood pressure but it does it even when my pressure is not elevated. My SPECT scans indicated severe abnormalities relating I think to blood flow in the brain so Dowa's explanation makes sense. I'm going to write it down so I don't forget to ask my doctor. Then I'll try not to lose the paper I write it down on. LOL

Dowa - Thanks for responding to Gracietiger with information I was looking for too. lol Is this test done just like a normal blood test?

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/14/2009 12:07 PM (GMT -6)   
Hi Scorpio-
You experience pressure in your head as well? Does anything trigger it?
What kind of abrnomalities were on your SPECT scan? Are they serious?
I am interested in getting one, but doctors don't seem concerned about this symptom. Though it is like the most intense one.

scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 3/14/2009 1:52 PM (GMT -6)   
Hi Gracietiger,

Are you going to a llmd? I apologize if you mentioned it before but I don't seem to remember much these days. lol

I don't experience much pressure in my head but did experience a vibrating sensation when I first started treatment. I also suffer with profound fatigue and severe cognitive and neuro issues.

I don't know where a copy of the SPECT report is right now but it did show moderate to severe abnormalities and "encephalytis" and "Lyme" were mentioned in the report. Even so, my many doctors dismissed Lyme because I kept testing negative on the standard tests. My many doctors just kept telling me that this is common in CFIDS which is what I was originally mis-diagnosed with. Unbelievable! I now believe that most CFIDS patients more than likely have Lyme Disease but that's an entirely different discussion. lol

Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 3/14/2009 1:58 PM (GMT -6)   
I just went through my files so I could tell you exactly what it is called. The test is called Prothrombin Time and Troponin. I had said fibrinogen before, I guess that is what is actually in the blood that causes it to be too thick. Yes, they just draw blood like a regular blood test, only took a few days to get it back. Mine was actually normal so, no treatment was prescribed. It was ordered because my spect can results were poor. Heparin shots are what they use here if the test is positive and I have spoken to alot of patients doing them and say they feel so much better. On Dr Cs website he said that 90% of his Lyme patients have hypercoagulation symptoms.  Good luck  D

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/15/2009 10:21 AM (GMT -6)   
thank you so much guys. i will definitely bring these tests up with my doctors. i need to get some kind of answer for this pressure, as it is very very frightening since it is so intense and i have no idea what it is.

chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 3/16/2009 12:17 AM (GMT -6)   
Head and neck pain are my # 1 symptom.
 
I had the swooshing and head pressure at an extreme level for about a month, which was about 3-6 months after I think I got bit. 
 
Now I'm undergoing treatment and haven't had the extreme levels, but still stiff necks and head pain. 
 
The swooshing/head pressure combo was 'by far' the worst thing I've ever felt/had in my life.  I thought I was dying.  That's went I had my g/f take me to the emergency room.  I insisted for 2 days I had a brain tumor.  They released me with a script for imitrex, claiming I "just had a migraine". 
 
Chief

gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/16/2009 9:06 PM (GMT -6)   
hi chief, i would agree that the head pressure is the worst thing i have ever experienced. did you find anything triggered yours?
mine is severely worsened by low barometric pressure, especially when combined with humidity. if the day is clear and dry, i don't have head pressure. i moved to california because i couldn't handle the pressure on the east coast weather. the pressure prevented me from doing ANYTHING. now, i can work and take a class. not without problems, but i am able. the pressure made me completely unable.
i worry because i don't frequently hear this discussed with lyme's. in fact, you're the first person who seems to know what i'm talking about. and i know head pressure is on the list of symptoms, and others complain of some sinus-type pressure, but the pressure i'm talking about is SOOO extreme that i feel like it is something much more severe and life-threatening. i just can't imagine what could cause such discomfort if it's not something incredibly significant.
did you ever get suggestions of what was going on with you??? your treatment has helped it?

minerals
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Date Joined Jul 2007
Total Posts : 943
   Posted 3/17/2009 10:09 AM (GMT -6)   
I had the absolute worst head pressure/headaches for 2 years before being diagnosed. I wanted to rip my head off the pain was so bad. The ringing and swooshing in my ears was so unbarable  I had to stop working as a psychotherapist as I couldn't consentrate on what my clients were saying. I also had clicking in my right ear and severe ringing in my left that would change in pitch and intensity. I really thought I was going out of my mind---I actually was due to the bacteria! Now the ringing only happens when I herx after meds. I think for me those symptoms were due to babesiosis and perhaps hypothyroidism as they began to get less and less as I got treatment beginning 2 years ago trying many combinations of antibiotics and suppliments. Now I am being treated for bartonella which I do not test positive for but believe I have. Things are slowly improving. I could feel absolutely great one day and the next feel awful, but the great days last longer and longer. That seems to be this is for me, it could even be from hour to hour I can get severe changes. But if I look at myself 2 years ago I wouldn't have imagined I could do what I do today. Hang in there and keep getting treated. One of these days you will take out enough bacteria to feel better. It won't be easy, it won't be cheap and it won't be quick but you can do it. Keep your eyes on the goal and outstare the darkness. Blessings

DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 3/17/2009 10:11 AM (GMT -6)   
P.S. The neck stiffness (once for an entire month) was very very bad for me in the beginning. It still flares but does get better with treatment and never is as bad as it was.

DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/17/2009 8:41 PM (GMT -6)   
thanks, minerals. your post was very inspiring. i too hope i can look back in a couple of years on these days able to do so much more than i can now!!
the head pressure you describe is a lot like what i experience too. it makes me feel crazy as well. unbearable.
i am wondering if anything triggered yours???

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 3/18/2009 10:15 AM (GMT -6)   
I don't think anything triggered mine. After I got bit for the 3rd time in 03 had a bullseye when my arm swelled up to my neck is when all hell broke loose for me. After 1 month of doctor shoppingnd a lyme test I finally got 1 month of doxy, then another month only after begging for it. A year or so after is when the headaches and pressure began about the same time I felt crawling sensations on my legs. I then began doxy and amoxy for 5 months however it was not a llmd it was a friend who had mercy on me and gave me what I asked for even though I didn't know what to ask for. It wasn't until many many doctors later that 4 years and total misery drifted by that I finally saw a llmd and found out about the co-infection and thyroid issues.
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline 9/08
modified cowden protocol 3/09
Outstare The Darkness--The Light Will Come!


chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 3/18/2009 10:20 AM (GMT -6)   

Gracie,

1) Triggers - I think there are many triggers to the head pain symptom.  For me, mold exposure, sunlight and bright lights, sugar and certain foods.  Thankfully, I've become sensitive to my triggers and they have become manageable. 

2) Suggestions as to what was going on? - Lots of suggestions by doctors like migraines, etc.  The reality.. its the lyme bacteria causing my head pressure, head pain, headaches.

3)Yes, treatment has helped - First, diet and exercise.  Secondly, doxy, mino, biaxin combo's. (changing every 6-8 weeks or so).

Oh Gracie, I think head symptoms ARE a main symptom with lyme.  Part of the issue in my opinion is that different people describe their pain differently.  Is it really a headache?  Or is it head pain?  Or is it head pressure?  Or is it brain fog?  Or maybe its just a stiff neck?  Oh, its just lightheadedness?....... you see, its the bacteria causing everyone's pain, its just that everyone describes it and feels it a little differently...

Chief

p.s. one day we'll have clear heads again.  mind over matter.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 655
   Posted 3/18/2009 2:39 PM (GMT -6)   
Wow I have the sound in my head and ears also. for a few years now. To know it is a part of Lyme is amazing. This is the only place I have heard of it being spoken of. I thought it maybe was nothing. Now to know it may be hypercoagulation! I love this forum.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 3/20/2009 7:01 PM (GMT -6)   
I keep coming back to this as i have a variation of it.

My neck pops -- causing a small jolt -- each and every time I turn it to the left. this resonates in the back of my head causing a minor headache and a little dizziness.

i have a positive western blot and some titers too. been on biaxin and doxy for about five months. need to add plaquenil ... and I will soon enough.

Daryl1
New Member


Date Joined Feb 2009
Total Posts : 14
   Posted 3/23/2009 1:34 AM (GMT -6)   
I had head pressure and swooshing in my ears when I first contracted Lyme. My Naturopathic Physician, Dr. Jenefer Huntoon, said that this was because my blood was too thick (high fibrinogen) due to the debris of undigested protein left over after a battle between Lyme disease and the immune system.

She prescribed high potency protein digesting enzymes to digest the debris (reduce inflammation) and thin the blood (reduce fibrinogen).

This worked for me and the head pressure and swooshing diminished.

Here is a link to one of her articles: http://lymenzymes.blogspot.com/
I have had Lymes, Fibromyalgia and Chronic Fatigue since 2006. I became intolerant of antibiotics so I started using all sorts of herbal remedies and they helped some. Concentrated plant enzymes prescribed by Dr. Jenefer Huntoon in Seattle helped me more than anything. Dr. Huntoon might be able to consult with you by phone or possibly she could provide her protocol to your local doctor.


gracietiger
Regular Member


Date Joined Dec 2008
Total Posts : 129
   Posted 3/23/2009 3:29 PM (GMT -6)   
hi daryl, thanks for your response.
so the protein digesting enzymes needed to be prescribed? are there any less potent variations that can be found OTC?
it sure 'feels' like the pressure in my head is a result of too thick blood. i always tell my boyfriend that my blood seems to have turned into tar. however, i of course don't really know what the case is, or why then it only occurs in my head and neck.
but this is such a great suggestion, i will have to mention it to my docs. i wonder if the high fibrinogen is the same thing that causes hyercoagulation? are they the same?
it's interesting because i have read a little about hypercoagulation since someone suggested it on this site, but in the articles i have read, there is no mention of head pressure and swooshing. also, mine is definitely triggered by humid and low pressure conditions, which is bit strange too. but it is drastically worse in these conditions, so i have no doubt something about them triggers the pressure.

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 3/23/2009 3:51 PM (GMT -6)   
gracietiger - may be wobenzym could be an otc option for you. greetings, dorit

Daryl1
New Member


Date Joined Feb 2009
Total Posts : 14
   Posted 3/29/2009 1:25 AM (GMT -6)   
Hi gracietiger,

Sorry it took so long for me to get back to you.

I don't know if otc protease would be strong enough to help you. You might be able to do a phone cons with Dr. Huntoon.

My impression is that high fibrinogen and hypercoagulation are the same thing, but I am not a doctor.

Hope you see improvement soon,

Daryl
I have had Lymes, Fibromyalgia and Chronic Fatigue since 2006. I became intolerant of antibiotics so I started using all sorts of herbal remedies and they helped some. Concentrated plant enzymes prescribed by Dr. Jenefer Huntoon in Seattle helped me more than anything. Dr. Huntoon might be able to consult with you by phone or possibly she could provide her protocol to your local doctor.

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