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Terrible Neuropathy and Constant Pain in the Head

Hi folks, I wanted to describe my symptoms as I've been suffering like this for the last month with no improvement. If anything, probably getting worse.

My story goes like this - I was originally diagnosed with a sinus infection back in Jan. The infection was so severe that after a course of antibiotics I was still very congested. I went to see my ENT, he did a nose culture which came back Negative and told me to use a netipod to clear out all the gunk and put me on steroid drops. I used a netipod for about 5 days and have actually been feeling a ton better until one night I awoke from a fluttering feeling deep inside my left ear followed by what felt like a shooting pain in the back of the ear and subsequent headache. Sleeping on that side felt worse and I also felt like my left eye was getting affected as well where everything seemed blurry. Needless to say these headaches have progressed to then feeling neck pain on the left side, as well as a spasm & awoke me from sleep every night. One night I felt like the spasm moved down to my upper back and I went to ER. ER did the usual bloodwork (which was all normal) and a basic neurological evaluation. They gave me a painkiller and a muscle relaxant, both of which did not do a thing & sent me home.

Went to see a neurologist in early March. He did EEG and some other tests in the office - something involving listening to cracking sounds on headphones, Ultrasound of arteries, and other tests I couldn't recall. He ordered an MRI without contrast, which came back normal. The only incidental finding was chronic maxillary sinusitis. All the tests were basically normal along with his examination, which was very thorough. He diagnosed me with migraines. He prescribes rizatriptan along with naproxen and a steroid. In this whole combination of pills I have to say that a combination of the steroid and rizatriptan was the only thing that made it more or less bearable to the point where I was even able to go for a run and workout. He told me to only take no more than 4 doses of the steroid and once I was done my pain was back to its usual self. At that point he told me that I may benefit from trigger point injections and insisted that I do not have anything besides migraines which I need to keep treating.

I decided to follow up with a different neurologist for a second opinion. She looked at the MRI images as well as did an evaluation in the office (no EMG was done, just nerve reflexes and a physical exam). She concluded that I have occipital neuralgia, vestibular neuritis, acute intractable headache, and sphenopalatine neuralgia. She told me that she thought my issues stemmed from my sinuses still being out of whack and sending weird nerve signals. By that point too my headaches have become not just one sided, but the pain was felt on both sides. The best way to describe it is constant, severe and debilitating nerve pain in the base of my skull and behind the ears.  The pain would be accompanied with the feeling of fullness and pressure, going down my neck and into my upper spine and going up my head. One of my other very bothersome sensations is pain, pressure and feeling of a spasm behind my eyes with difficulty in moving them as well as facial pressure and sinuses. The pressure behind eyes gets worse when I bend down my head. I had a virtual consult with a different neurologist as well and she seemed to be unsure of my pain origins but she denied just like the other two neurologists that what I'm feeling could be due to an infection of some sort, which was my concern. She prescribed amitryptiline which I have not tried yet, but that's next. I asked for a spinal tap but given that I live in NYC and that we are in the midst of a COVID-19 pandemic she said this test would not be done at any hospital at this time but also she doesn't think I even need it.

With the constant pins and needles in the head that have no relief from any meds I took so far (except for some relief from steroids/triptan combo), the constant pressure than worsens with lying down and this pandemic which prevents me from doing any further testing, I feel stuck and severely anxious, I have been climbing walls here from these crawly senastions inside my head. Also, I was prescribed Valium among other things and even that didn't seem to do a ton. I am also isolated in a house by myself and am concerned for my wellbeing. My family is worried also.

Can any of you suggest what this could be and recommend the next steps? I am following up with my Neuro next week.
1 Responses
973741 tn?1342342773
Ugh, I'm so sorry.  While this may or may not be similar, my husband has had something with his sinuses that resulted in a months long intense headache.  He had sinus surgery years ago which somehow resulted in his missing a bone that prevents him from ever having another surgery for his sinuses.  He's a 'just deal with it' patient.  It was well over six months of torture with the last flare up for him.  He took high dose ibuprofen and mucinex to keep the secretions thinned.  We put an ice pack on his forehead.  He tried to sleep more than usual.  We did head and neck massage.  Kept him going and he DID recover and has not had another bout of this for a couple of years.  Pseudophed is another product recommended to him.  I have an issue with vertigo stemming from my inner ear.  While not what you describe, there are theories this also involves one of the nerves you mention getting irritated Pseudophed is recommended for that as well.  Might be worth a try and shouldn't hurt anything in the process.   This may be why the amitripytiline was prescribed as it was recommended for me as well.  

Follow up with your neuro but perhaps try these things in the mean time. Both my husband and I have recovered from our issues that have some similarities to yours so that's to give you hope.  hugs.  
2 Comments
Hi Specialmom, thank you for your reply. Is Pseudophed a prescription drug?
No, it's an otc product but they do often have it back with the pharmacist.  (it's one of the meds that people who cook drugs were seeking for a while so they now stick it back with the pharmacist typically).  It is non prescription.
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