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Attention: head pressure, pressure in head, headache people!
Hello everyone, after suffering for nearly 2 years with a mysterious neurological-like condition, I have almost given up all hope of living a normal life again. After a whole lot of research on the net, I have run into several postings with people describing my condition almost down to the exact letter. However, many of these posts are on some obscure website with the postings being months or years old. The purpose of my post here is to *hopefully* unite those of us who suffer from this unexplained condition.
The one symptom that seems to bond us all together is a constant "pressure" sensation behind the forehead and beneath the front top of the head. The way people describe this varies according to personal expression, but it is usually best described as an expanding sensation behind the forehead as if the brain is growing larger with nowhere to go. The headache is dull, non-throbbing, and does not get worse with exercise. The patient will also describe a sort of "perpetual dizziness" that may be constant or may come and go again. Usually, but not allways the patient will describe the sensation of having a constantly blocked nose even in the absence of any type of discharge or sinus infection. Most but not all patients will describe a feeling of tension or stiffness in the cranial muscles, especially in the forehead.
The one symptom that seems to bond us all together is a constant "pressure" sensation behind the forehead and beneath the front top of the head. The way people describe this varies according to personal expression, but it is usually best described as an expanding sensation behind the forehead as if the brain is growing larger with nowhere to go. The headache is dull, non-throbbing, and does not get worse with exercise. The patient will also describe a sort of "perpetual dizziness" that may be constant or may come and go again. Usually, but not allways the patient will describe the sensation of having a constantly blocked nose even in the absence of any type of discharge or sinus infection. Most but not all patients will describe a feeling of tension or stiffness in the cranial muscles, especially in the forehead.
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.
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...
Scott
Scott
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.
Hello Mineandyours,
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 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!
1 Comments
For me it' mast cell activation now in my head. It's after a cold/flu but being the cold does it too. Some people are bothered by heat instead or both. Immunity type encephalitis is what I'm looking into now. There are otc meds for mast cell.
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