I forgot to add that almost all of us also feel like we are living in a perpetual dream-like state, a very frightening state of mind.
Also, a lot of sufferers may describe the sensation that a heavy weight is sitting on top of their head all the time. A few sufferers describe visual hallucinations such as black streaks out of the corner of their eyes especially early on in the course of the illness.
Every one of us have been to multiple doctors, neurologists, ENT, even chiro's with no answers. We have been mocked by doctors, brushed aside, referred to psychiatrists, and have lost our ability to live a normal life. We have all have the usual brain scans and bloodwork which all appears normal. When we first started feeling bad, we all thought we were dying, but we're still alive and kicking but we are in serious discomfort all the time. We have thought of all the possibilities such as environmental factors in our homes.
Please reply and describe what is going on with you if this describes you. I would like to actually accomplish something here rather than just swap stories. I'm really sick of feeling like this. I don't know what I want to do yet, maybe start a petition describing our problem and one of us take it to the Mayo Clinic or something. I am actually convinced that we have an illness that is yet to be discovered.
HI I had to respond to the, "head pressure" post. I has never ever had this until August 2006. It began suddenly. I thought i was literally dying i felt so badly. The pressure sometimes crawl up my neck into my head..but i awoke most mornings w this. I can take a lot..and i did for Aug and finally in late August sawa neurologist. It felt for me like i was going a million miles an hour on a roller coaster..it would also cause me to feel like weakness going into my arm. The Neurologist said that this was most likly emotional I knew it was something. However , my MRI was NOt normal, and i have two spots . I came online to see what others had head pressure. Even in one ER thye were baffled w it , and said they had no idea what it was and said it wa snerves. I thought maybe a pinched nerve in neck could also cause , but anyway.. what other symptoms do you have . Mine is most likly diff than yours. I am getting a lumbar puncture .Take care and your not alone. Kit
Wow...it sounds like me..here are my symptoms: dull/pressure headaches,dizziness,concentration issues,fatigued,ear plugged, I am a 32 year old male who before this played hoops every night lifted weights, ect. Fun loving person who had/has everything...great family/ ect. So I have had all the blood tests and MRIs..everything checked out fine. Had two spinal taps where my opening pressure was 40cc and 28cc..also a flo study of my spinal fluid. The doc diagnosed me with a pseudotumor but have had second/third opinions that say I have a brain virus..It has made me into a person I don't even know...I sometimes feel better at night and first thing in the morning....also have severe anxiety over this..Have thought about going to Mayo..The last seven months have been awful...The best way to explain how I am feeling is severly hung over...
Take Care You're not alone
Lyme disease usually manifests with body/joint pains. This is not a symptom of the condition I'm describing. Although a Lyme titer isn't 100% accurate, a negative result makes Lyme even less likely.
Hi everyone...Neurological Lyme disease can cause these problems. Once that bacteria penetrates the pristine environment of the central nervous system, all sorts of bizarre things happen. Doctors don't know about it or its co-infections---even at the best hospitals. If you want to be properly tested and diagnosed and treated, your only recourse is to find a Lyme specialist. (www.LymeNet.org) I'm not saying this is for certain what is wrong, but it certainly warrants investigation.
Been there, done that for two years and saw 14 doctors. Was ridiculed, brushed aside, shouted out and condescended to. Lyme can evade detection in BOTH blood and spinal fluid so it is ultimately a clinical diagnosis. You don't have to recall a bite or have gotten the rash to get it. I sure didn't.
Joint pain or swelling or tenderness
Stiffness of joints, back, neck
Muscle pain or cramps
Tremors or unexplained shaking (especially at night)
Burning or stabbing sensations in the body
Weakness or partial paralysis/stroke-like symptoms
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Sudden jerking of fingers or entire limbs
Pain in spinal column
Unexplained weight gain, loss
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well. (If it was mild, you may not even recall this.)
Double, blurry or dim vision
Increased floating spots
Pain in/behind eyes, or swelling around eyes
Over sensitivity to light
Decreased hearing in one or both ears
Buzzing or clicking noises in ears
Pain in ears or sound sensitivity
Ringing in one or both ears
Pressure or feeling of fullness in ears
Digestive and Excretory Systems
Diarrhea, irritable bowel
Irritable bladder (trouble starting, stopping)
Frequent urination that is not normal
Upset stomach (nausea or pain)
Respiratory and Circulatory Systems
Shortness of breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Mood swings, irritability, rage
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Overemotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Memory loss (short or long term)
Confusion, difficulty in thinking, brain fog
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Forgetting how to perform simple tasks
Head, Face, Neck
Unexplained hair loss
Headaches, mild or severe
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy)
Tingling of nose, cheek or face
Stiff or painful neck or creaking
Jaw pain or stiffness
I've been heavily involved in Lyme for several years now, attending conferences, etc., and I've been on antibiotics for nearly three years. Neurological Lyme disease does not necessarily manifest itself with joint pains. I didn't have them. My first symptom was a non-stop headache for months on end.
One can have a flaming, raging case of Lyme disease and test negative on ANY test in both blood and spinal fluid. Please read the following and if your symptoms continue, you may want to revisit the issue.
Nine Reasons for False Negative Lyme Disease Blood Test Results
From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease
1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.
2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.
3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.
4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.
For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.
5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.
6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.
7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).
Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.
8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.
9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.
Great comment on Lyme disease...the lady that owned my house had lyme disease and I talked to the doctor about this and he gave me a blood test that showed negative for Lyme disease...could I still have this???the blood test showed negative...
Hi - I had head pressure and dizziness along with constant headaches and other obscure symptoms - Neuro is still unsure about the cause - had 2 normal MRIs, but no other tests as yet. Put me on Neurontin - was supposed to be for nerve pain - didn't help that, but did take away head pressure and dizziness at a dose of 900mg /day.
I have been having weird symptoms for 3 months... it started with heavy legs, dizzyness, sore muscles and quick shooting pains coming and going it various parts of body.
My GP gave me blood tests and neuro exam and I was fine. He then referred me to a Neurologist, who gave me a neuro test and I passed all sensory, balance, reflex, etc. test. I had a Brain MRI and that was also clear... no MS, no tumor, no nothing.
I am beginning to wonder if I have Lyme disease... now I have this strange soreness that comes and goes in hip joints, and leg muscles... is there a special Lyme test that most GPs don't do? If so, is this a special blood test over and beyond the basic blood panel tests that the GPs order?
Thanks in advance for your response.
I tested positive for Lyme over the summer but continue to have this sinus type pressure in my head. I was put on antibiotics for sinusitis, which i was sure I didn't have but while I was on the antibiotics, I felt the best I had felt in a long time. I'm thinking I still have Lyme and the antibiotics were helping with that. Now I'm off the antibiotics and the head pressure is back!
What test do they perform to test for Lyme Disease??
Hope u continue to feel better.
Wow I have alot of those symptoms including head pressure, memory loss, difficulty falling and staying asleep, mood swings, irritability, depression that starts very suddenly, an unexplained tingling sensation in my feet and hands, feeling of fullness in both ears and many others. I have four questions for you...
(1)Should I get tested for Lyme disease?
(2)Where do I go to get tested for Lyme disease?
(3)Is Lyme disease a bad thing?
(4)How can it be cured?
Thank you soooooo much, I never would have thought about Lyme disease being a diagnosis for my problem. You have opened up an entirley new soloution. THANK YOU!!!!!!!!
I have the same pressure behind my right side forehead!! it started about a year and half ago, and i started getting night terrors, and the pressure would not go away!! and i had a tingling sensation in my left hand down my neck and my elbow on left hand! so frusterating and scarey! the doctor gave me antibiotic amoxicillin and it caused my skin to burn a bit, and then he referred me to a shrink saying it might be depression or something!!! well, its back again!! it went away over the summer but i suffered through with it during spring time and winter last year!!! any advice??
I developed my horrible problems after getting braces. I have gone to all types of Drs. and learned that braces can cause cranial problems. I tried an appliance called ALF to level my bite but I it didn't help either. It all started with pressure in my forehead and developed into slight pain that went away when I laid down. After a year, I developed mental fog and pain that lasts all day long now. My head is tender and touching my head affects the pain.
I've had headaches, pressure, hands and feet tingle, now for about one month. I stopped eating fish in case it's mercury poisoning. I doubt it's Lyme's disease because I live in the desert. I also doubt that it's just tension. This is how I often felt when exposed to smog, except once I left the city the symptoms would disappear and at this point they are constant. Very annoying.
Hey everyone. I have had symptoms that sound a lot like what the original poster (citizen t) describes, for about 3.5 months now. It sucks, in a big way.
Here's a run-down of my symptoms:
- Constant feeling of pressure surrounding eyes, including lower forehead -- basically where the sinus cavities are
- When at worst, pressure focuses behind my right eye, and feels like a warm thumb twisting into my brain
- More or less constant dizziness
- In last two months, pressure has moved out to ears, which I now force to pop almost constantly to try to relieve pressure. Feels like it helps while I'm doing it, but no lasting relief from pressure.
- All symptoms subside more or less entirely when I lie down. I sleep fine, but once I get up in the morning, the pressure gradually returns and builds, and remains throughout the day.
- Pressure tends to be worst in afternoon.
- No drainage or anything like that.
- I've been on antibiotics on and off for several months. One round of Augmentin seemed to help dramatically, but not 100%, and then symptoms gradually got worse again.
- Several rounds of steroids. Seem to help while I'm on them, but useless long-term.
- Zyrtec (allergy med): no effect.
My best guess right now:
I think there's a fair chance that what I have is a very stubborn sinus infection. Almost all of my symptoms are concentrated in the sinus areas, except for the ear pressure, which I'm told can easily be caused by inflamed sinus tissue pushing pressure outwards. I'm thinking that I have an infection that was partially killed with my first round of Augmentin, but is now resistant to all the antibiotics we're trying, so it is basically a hold-out that is festering in my sinus tissue. I had a CT scan that showed a small amount of inflammation in the area from where most of my discomfort seems to originate, but which my doctor thought (maybe wrongly) wasn't significant enough to explain the symptoms I describe.
My next steps:
I'm going to try something called colloidal silver (ordered some from a company called "Peaceful Mountain," but there are many), which apparently was in widespread use before antibiotics became the dominant treatment for infections. It sounds hippie-ish to me, but apparently it was actually used with substantial success in the old days, and bacteria don't develop resistance to it like they do to antibiotics. Plan to begin treatment with that this afternoon, and see what happens -- it's supposed to attack both fungus and bacteria, so if the problem is bacteria growing in a fungus layer, it should wipe it out with an aggressive enough treatment. Many people claim this stuff works wonders, so I'm giving it a shot.
If that doesn't work, I'm hoping to talk my doctor into doing sinus surgery, just to see what happens. I'll pretty much try anything at this point.
One thing I'm curious about from other people -- how many people find that their symptoms go away completely when they lie down at night, and then come back when they get up and move around for a bit and then build throughout the day, as long as you're upright?
Thanks for listening. Good luck to everyone.
I've started with colloidal silver from MesoSilver a few days ago. Make sure it's a true colloidal silver. Some cause agyria. Here is a link to a lab that tested some of the products. They don't have info on PeacefulMountain but you could always send them a sample.
I used MesoSilver last year for a few months for other reasons and I felt an overall improvement.
I use a nebulizer since it seems to be more effective this way.
I strongly believe in the healing powers of healthy foods and herbs. I've eliminated everything from my diet that's not healthy. And I'm considering Milk Thistle for cleansing the body. Walking and yoga neck exercises feel good.
I'm not as tired anymore perhaps it's improving. But I do still have the other symptoms citizen t describes.
citizen t - have you made any progress since your first post in finding out about your condition?
I just dont know if the pressure is to do with the panic attacks and fact that i am completely stressed out and having the sinus problem on top of that. anyone know if this could possibly be the case?
Am 22 and scared that it is more serious , ie brain tumor!?? it is not like a head ache just pressure as if someone is pushing on head.
am in uk and nurse did say it would be to do with sinus problem but actually petrified.!
Any more advice would be really helpful
thank u so much x
Thank u so much
Think i just need reassurance, the thought of going thru scans and stuff is making it worse, doctor said considering am 22 with no serious head aches or sickness cant see it being anything serious but when your mind is already in a mess its hard to believe that
Just gotta try relax and think happy thoughts :)
Even worries me to tempt fate but got my whole life ahead of me
Thanks for yours comments x
Not sure what exactly is causing it, but probably not a tumor. Those are rare and typically are pretty intense and painful. Probably related to the other things you have going on
cheers not got much pain, not severe or sickness and only started since i started worrying so much
cheers so much for ur input sometimes just writing it down actually helps a bit x
Hi, Something similar happening to me. Started 2 weeks ago with back/neck pain and I thought I may be from lifting my child and some digging/lifting I was doing in our yard. Also had dull, short term pain in left arm/leg and left ear. Now the problem is mainly my head, which I had thought may have been from the neck/back problem. I feel constant pressure at various places in my head, which basically gives me a constant light headed feeling. Past couple days mainly in nose/eyes/forehead area. But have also felt this in my temples, top of head and back of head. Have also felt nauxious on 2 seperate occassions. All of this is constant, too. Pain/Pressure is never really bad, maybe a 2 or 3 on scale of 1-10, but does not go away and I do not feel up to exercising, leaving house, etc. Saw doctor and he felt is stemmed from neck problem and wasn't a big deal...But I'm not totally convinced. Also had something similar (but milder) happen about 3 years ago, but just went away after a couple of weeks. Was living in Rochester, MN, so went to Mayo, but they didn't see need to run any extensive tests, etc.