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Forum Name: Headaches

Question: BURNING TOP OF HEAD

sherivery - Sun Dec 17, 2006 8:46 pm

Just started new life after being on Oprah to suddenly become ill. I have been trying to get answers for 7 months. Been to 3 Neurologists who seem to not care about my condition. In desperate need of advice on what to do. Here is my medical history: GENERAL COMPLAINTS IN ORDER OF MOST SERIOUS: 1. Daily severe Headaches to moderate burning top of head 2. Chronic Neck pain 3. Lightheadedness/ Feelings of passing out when standing/sitting (morning usually) 4. Toe area pain (left upper) 5. Slight numbness in right thigh (front) AUGUST 2005 – INJURY: Tore nerves in left back of knee area while running. Since then, a series of symptoms and complications has developed. 9 MONTHS LATER FOLLOWING INJURY: 2006 - MAY - Bad Pain in top part of left big toe develops suddenly overnight; 2 wks later cannot move it; pain is severe when moved upwards – sends pain up left calf (back of knee area). As of January 2007, toe in same condition. - Left foot weakness continues. Sharp shooting pains continue up injured area (back of calf/upper knee). ** This continues until present date. ** - NO MRI provided for toe area to present. ------------------------------------------------------ 2006 - JUNE - (MRI) of left leg calf given: Tested positive for Edema. Edema remains for a period of 5 straight months - left untreated. - Pain develops in left calf (electrical pains shooting when walking). Usually stops me in my tracks when walking. - Bad Headaches develop; migraine-like average maybe 5 days out of the month of June. ------------------------------------------------------------ 2006 - AUGUST - Edema still a big problem in left calf; foot swollen after 10 mins of standing due to edema. - Frequent urination; urine begins to turn a lime color green - Right thigh becomes numb, burning sensations, tingling. Burning lasts for about 3 weeks off & on but mostly at night when laying down. Crawling sensations and tingling added. - Bad Headaches subside. Not as bad. -------------------------------------------------------- 2006 - SEPTEMBER - Edema still a problem in left calf; foot swollen after 10 mins of standing due to edema. - Left eye starts to become painful in back of eyeball; “very slight” occasional blurriness develops. - More dizziness from time-to-time - Lose balance “occasionally” – not much. - MRI (Brain) proved positive for small lesions (7) - SPINAL TAP conducted. Develop chronic Neck pain (back of neck) 1 week later. - Lightheadedness and pressure builds in head when standing or sitting often – making me feel as if I am going to pass out. As of January 2007, in same condition. This generally lasts for about 30 mins. - EPIDURAL BLOOD PATCH conducted 8 days after Spinal Tap. Neck condition worsens. - Very bad Headaches frequently 2x-3x per week. Headaches mostly occurred in the back of left eye and back of head and seem to happen since Spinal Tap. 2006 - OCTOBER (LAST WEEK OF MONTH) - Numbness in right leg resolves a lot - Edema in left calf resolves a lot - Pain in left eye resolves a lot - Headaches resolve a lot but come & go occasionally (less severe) - Lightheadedness and pressure builds in head when standing or sitting often – making me feel as if I am going to pass out. This generally lasts for about 30 mins. Seems to be getting worse. - Lose balance “occasionally” – not much. ------------------------------------------------------------ 2006 – NOVEMBER - Started taking “NEURONTIN” twice daily 100mg. - Terrible migraine-like Headaches begin seems like ever since taking Neurontin – mostly appearing at very top of head. Headaches begin 2nd week of November and continually increases daily becoming worse. - Burning pain begins at very top of head. This happens sporadically. - Terrible (more like pressure-like) pain running up back of neck to my head. Getting worse. - Frequent urination from time-to-time - Lightheadedness and pressure builds in head become worse when standing or sitting often – making me feel as if I am going to pass out. This generally lasts for about 30 mins and happens mostly in morning. - Lose balance “occasionally” – not much. --------------------------------------------------------------- 2006 – DECEMBER - 12/03 Left hand becomes weak for about 8 mins. Hard to lift a pen. - Headaches become a lot more severe and is now daily – mostly starting from left temple/eye area to top of head. Can no longer lie on the back of my head or left side of head; it brings on severe shooting pains in head – mostly top. Sharp shooting pains on left side of head (temple/eye area) happen sporadically. - Burning pain begins at very top of head. This happens sporadically. - Lightheadedness and pressure builds in head when standing or sitting often – making me feel as if I am going to pass out. This generally lasts for about 30 mins. - Forehead becomes numb without notice on 11/30/06. This happened twice in a two-week period. Lasted maybe an hour. - Frequent urination (once in awhile). - Chronic Neck pain gets worse. Sometimes hard to turn neck because of pain. - EMG TEST conducted 12/13/06 (High Point Neurological Center): There was no response from the Lateral Femoral Cutaneous nerves on either side of leg. - Lose balance “occasionally” ** NO Nausea DURING Headaches ** NO DIZZINESS Since taking Neurontin: - Burning on top of head starts and increases daily. Never had this problem before. - Entire head becomes very sensitive to touch to a point I can’t lay my head on a pillow to rest (sporadically) - Forehead becomes numb (see “December 2006” above) - Neck pain becomes worse when trying to lay down. Pressure runs up my head from neck. Dosage: (2 pills simultaneously) 100mg each tablet once per day (night) Excedrin Tension Headache, Acetaminophen (500mg) and Caffeine (65mg), Aspirin-Free - 4 tablets per day Aleve, 220mg - Don’t take very often, maybe 1 tablet once per day if a lot of pain. I do not mix Advil and Aleve together. Advil, 200mg - Don’t take very often, maybe 2 tablets once per day if a lot of pain

Dr. K. Eisele - Mon Dec 18, 2006 6:23 am

sherivery: Wow! You must be feeling really awful. I'm so sorry you're not having any luck getting better. First of all, I think you need to see your family doctor for complete lab work. Your symptoms sound like they could be due to so many different things, that you likely need to have a complete lab work up and physical exam. Another factor that may prove useful to know is your age and race. You mentioned having gone to neurologists. I'm wondering if a neurologist saw you after the MRI of your head was done a few months ago. Did anyone tell you what their ideas were? Has anyone mentioned that you might have a nerve disorder similar to trigeminal neuralgia? The burning on the top of your head sounds similar to this, and the treatment for it is generally gabapentin (Neurontin), but other medications have been used as well, with success. Carbamazepine (Tegretol), divalproex (Depakote), and pregabalin (Lyrica) are the ones I've heard that have had the most success after gabapentin failed. Good luck--Please come back and let us know what happens.

sherivery - Mon Dec 18, 2006 5:35 pm

Yes a Neuro saw me after MRI... she sent me for a spinal tap to test for MS, Lupus, and other mimic MS diseases. It came out negative so she sent me for 2nd opinion at Wake Forest Baptist University Hospital in NC. There, the Neuro told me it "could" be MS but was unsure. After I found another Neuro, he told me it didn't look like MS because of the lesion pattern in the brain. It was different than those who have MS. So now I am going to Duke soon to see one of the top Neuro's there. By the way, I am on Neurontin. Doesn't seem to help much during the day - only at night...Weird...

Dr. K. Eisele - Tue Dec 19, 2006 4:31 am

sherivery: I did notice you had said you do take Neurontin, which I think is potentially a very good medicine with few serious side effects. I do think it odd that it helps only at night. Have you had a complete lab work-up done? I think it would be worthwhile to have your Blood glucose, electrolytes, thyroid function, urine analysis (for infection), and Complete blood count tested. Best wishes.

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