I am a 45 year old woman who was very healthy up to about 3 months ago. In June after my vacation to the Smokey Mountains, I developed joint pain. I went to family doctor he told me it was viral and told me to take 2 advil 3x a day. I did, then after about two weeks of this I went to urgent care to get another opinion. The doctor thought it might be lyme disease or autoimmune. She prescribed me doxycycline for lyme disease and told me to go back to family doctor and get more tests done for autoimmune. The joint pain disappeared, but then about the same time I developed severe neck pain, head pressure headaches and a feeling of extreme fatique. I went back to my family doctor and had blood work done and everything came back normal, no lyme disease. I stopped the doxycycline because I wasn't sure that it wasn't part of the problem, but the symptoms persisted plus felt like I had water in my head. I went to ER and had more blood work done, CT, and a lumbar puncture. Again everything was normal. about 8 days after lumbar puncture, I developed nausea along with all my symptoms. I went back to ER and had a MRI. The ER doctor said everything came back normal. Then all of the sudden everything seemed to be going away. I felt about 90% back to normal. However, within a week all the symptoms came back but even worse (not sure if it was caused by me jumping back into all my normal activities, including working out). My head pressure headaches were worse, nausea worse, I woke up in the middle of the night with a strange panting breathing, nausea, tingling/burning sensation at the top of my head, and irritated/dry eyes. After about a week of this I went back to ER and was admitted to the hospital. I was seen by neurosurgeon and infectious disease doctors. Test were run (all normal), except for epstein barr virus. I did not have a fever and my throat was not sore. I had a MRI of head and neck again, this time head MRI showed a lesion on brain stem and neck MRI showed a buldging disc. I was told may be MS, but no other lesions were found. I also had no other symptoms of MS. The head pressure headaches went away immediately after I had a second lumbar puncture. I slept better, the tingling/burning sensation at top of head was gone, no panting breathing, and no nausea. I did have a post lumbar puncture headache instead, which was actually more bearable than the head pressure headache I had been having. After a couple of weeks all the symptoms returned and has remained except over time the nausea has improved, the head pressure headaches now seems to be more centralized to temples, back of head, and at times upper right side of head and behind right eye. Starting this month, my main symptoms seem to be neck pain (back, front, throat, and both sides along with jaw) with a nerve pinching feeling that seems to be connected to my carotid artery and the centralized head ache, insomnia, lower back pain (probably still due to two lumbar punctures in the same month), and I alternate between feel freezing cold and extremely hot, night sweats (may be due to starting menopause), and diarrhea. I am really tired of seeing doctors (neurologists included) and no one seems to know what is wrong. I also am tired of not feeling well.
Thanks for writing such a detailed description.
Headaches are of different types like tension, migraine, sinus and cluster headaches. Your headaches seem to be coming in cycles with either pain free interval or reduced intensity. They seem like cluster headaches. Please see these two links for more information on them.
Your symptoms could also be due to lesion in the brainstem. http://www.medscape.com/viewarticle/507375_4 The article highlights this. I understand you have been told it’s not MS but there is no harm in taking a second opinion. Alternatively the symptoms could be due to bulging disc in your neck giving spondilytis like symptoms. You can take the opinion of an orthopedic doctor.
It’s also important to note that lumbar puncture is reducing the intensity of the headaches. Maybe that’s the clue to treatment. Please discuss with your doctor.
Another possibility could be excessive anxiety and panic attacks, and hormonal dysfunction like thyroid or adrenal problems.
Please discuss all these possibilities with your treating doctor. Let us know if you need more help.
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