Constant headaches and severe fatigue continue, should I let it go?

[Hollymist]

I am a 40 yr. old nurse, and have multiple medical problems including Sarcoidosis, DJD, and Fibromyalgia. I have a constant "pressure" sensation in my head, which increases greatly with bending, or any exertional activity. MRI of head has shown that I have a "mild" chiari malformation, pituitary microadenoma (with no lab changes), and a sm. pineal cyst. Sarcoidosis did not show on MRI either. I have been off work for over a year now, and tried different meds, but I am not one bit better, and actually I feel as if I am getting worse. I also have coordination problems, and frequently jumble words when talking. I also have fast heart rates to 190 with any exertion. I have seen 2 nsg's who say the chiari is not "bad enough" to do surgery, although they think I have a "cough h/a". I saw a Neurologist who thinks it is due to fast HR, and a cardiologist who thinks I have a neuro problem. My Internal Medicine Dr. has been supportive about my disability, and just wants me to not work, and deal with the symptoms. I am struggling to do daily activities when not working. I also go for Water exercises 2 x wk. that exhaust me so much I am in bed the rest of the day. I just feel that I want to get better, and maybe something is getting missed. My Internist says that all the testing is done, and I should just accept my current state. Should I pursue a more thorough Neuro workup, or just forget it?

[CCF-Neuro-M.D.-JT]

I'm sorry to hear about your symptoms. As your life seems to be greatly affected by your headaches, I don't think you should just "forget it."  Without personally examining you or reviewing your films, I can't give you an accurate opinion regarding the diagnosis. But there are a couple of things that may be of help to you.  First, pineal lesions can cause obstruction of CSF flow through the brain in many cases with positional change depending on the size. This could certainly cause severe headaches. Look at the films again with your docs.Second, I have seen younger patients (teens and 20 year olds) who suddenly started to get horrible positional headaches following sports injuries in which someone tackled them to the ground  in a touch football game, etc... They turned out to have a CSF leak in their lower back because of a tear. With a blood patch, they came back to normal. Abnormal heart rates can also cause headaches. It doesn't sound like the Chiari is the problem if 2 NSGY were not impressed. If you are truly so affected by the pain, you should get to the bottom of it. Get a second opinion by another neurologist and sit down with them with your MRI. If you're tired of seeing neuro people, then see a headache specialist or chronic pain management clinic. Best of luck to you.

[Ronisundiagnosed]

Your condition sounds like a virus or lymes. Try a massive dose of Valtrex. Do not let Doctor's make you think you are crazy. It is them that are non caring enough to find your problem.

[CCF-Neuro-M.D.-JT]

After further consideration, a spinal tap may also be helpful for a number of reasons: to look for a chronic meningitis, increased pressure  in the absence of neuropathology which we see in people who are overweight or on fad diets or special meds(pseudotumor cerebrii), meningeal cancer, sarcoids meningitis. Hope this helps.

[mosem]

Hollymist, I have been suffering the same symptoms as you, and also for the past year. I have just left work because I am too ill to continue. I am a 44 year old male computer consultant here in Australia. I have a constant "pressure" senstation in my head that gets worse when I walk, and have a headache now for 1 year. I have a pituitary cyst, some coordination and balance problems, neck aches, Chronic Fatigue that is both physical and mental, and I have also jumbled words on occasions, and other similar problems to you.
I have had an EEG, ECG, blood tests etc..
I wrote down in a clinical fashion, all the symptoms and have now presented these and visited with 3 neurologists over the past year. All examined me and all received the same list of symptoms from which to start their examinations.
The first Neurologist said I was depressed (which even my GP thought was a joke), so she referred me to a second Neurologist.
The second Neurologist said I had ME/Chronic Fatigue Syndrome/Post Viral syndrome and that he could do nothing for me. He said that we do not know why these diseases have long term effects on the brain so that he was sorry but he could not help.
The third Neurologist said I have cervical radiculopathy.
You should NOT let this go!
I know what this can be like. Sometimes I think I am fighting the medical establishment as well as this disease.
Sometimes I wish there were more people with this condition (whatever it is) that I could talk to so that we could take some strength from one another, and help one another.
I rest and then I continue the fight, and you should do the same.
It is one hell of an effort, but every day you have got to try and come out punching.
I would like to hear how you are progessing, and I can let you know how any of my further investigations are progressing.
Good Luck
***@****

[_Rich_]

Hello I am a 12 yrs old and I also have these kinds of headaches. It is affecting me in school and and now I am am starting to always feel chilly everywhere. I feel dizzy a lot of the times and have a bad headache every night. Things that our close together make me dizziest the easiest but some things that I look at make me dizzy also. I used to not get sick in the car but now when i go somewhere like the store which is like a mile away I get sick. I also always have sinus problems and my dad has a pituitary problem. Could you please help me in any way that you could and tell me what to do to stop this and if i need to take any medication.

[marianna68]

I suffer from constant headaches also, migraines a lot.  I ended up in the emergency room twice last week with severe migraine.  They did a CAT Scan and a spinal tap but both came up negative.  It has been a week later and I still have a headache, no longer a migraine but still heaviness in the head and slightly throbbing temples. It took demorol to knock the pain out and even when the emergency room nurse gave me the medicine I still had pain a few hours later until finally it went away.  I am taking Buta, which is a barbituate to help alleviate the headaches but they do not completely go away. What could create such pain?

[marianna68]

I suffer from constant headaches also, migraines a lot.  I ended up in the emergency room twice last week with severe migraine.  They did a CAT Scan and a spinal tap but both came up negative.  It has been a week later and I still have a headache, no longer a migraine but still heaviness in the head and slightly throbbing temples. It took demorol to knock the pain out and even when the emergency room nurse gave me the medicine I still had pain a few hours later until finally it went away.  I am taking Buta, which is a barbituate to help alleviate the headaches but they do not completely go away. What could create such pain?

[Suebash]

I have had headaches all my life.  Had numerous MRI, CT, MRA and everything is negative.  Until now.  Finally they have discovered that I have something called Arnold Chiari Malformatin 1.  This is a rare disorder that you are born with but don't get symptoms until adolescece or adulthood.  Please have your Dr. check to see if you have this rare disorder.  It can be seen on a brain MRI, but many radiologists don't look for it.  The good news is it is curable, the bad news is it involves surgery.