Avatar universal

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.
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Avatar universal
Hi Aarnu, sorry I have not seen your response earlier. I was so busy reading other people's responses these last couple weeks that I have been ignoring my own:

Sorry to hear you are going through something similar. Any more answers for you since you wrote this? Maybe you are feeling better now?

My symptoms have unfortunately been evolving in a not-so-positive direction. I am now on a daily headache preventive medicine (10mg of Amitriptyline) that just takes the edge off the headache slightly, and I just started a nightly Gabapentin (300mg) which is a neuropathy med thats supposed to help with the nervy things I have been feeling. None of the meds are even close to helping completely and to this day I do not have any further answers.

Since we have been on lockd0wn I have been virtually talking to my neurologist and updating her with my symptoms. I will tell you that there are days when I don't feel terrible, but most of the days I still feel the extreme pressure, burning pain in the head with extremely tight cranial muscles and difficulty/discomfort moving my eyes along with tightness and pain in my neck. The headache, although still predominantly on the left side with pain and tingling in/behind the ear, is now more generalized and can be felt on the right side as well. On some days it travels from side to side and has increasingly become a two-sided general head issue. The overall feeling of pain I can describe as a 9.5(with 10 being the worst headache of your life) and the type of pain is a burning, throbbing, pulling sensation and the sense that my brain is expanding (and sometimes moving, yes, moving. I know that sounds strange). Additionally, my nighttime difficulties have increased even more now as I started to experience other neurological issues like body spasms, twitching, and strange seizure-like episodes that when described to my doctor are totally downplayed. She thinks a lot of what I am feeling is anxiety and even suggested therapy but I don't think therapy will be the ultimate answer, although it may help me deal with this whole thing a bit better. I am scheduled for another MRI of head and neck in a couple weeks. She didn't think that an MRA was needed in my case, although she initially scheduled it and subsequently canceled it and replaced with a normal MRI. She was my second neurologist after the first one diagnosed me with migraines and refused to look into any other diagnosis (this is definitely NOT migraines). I am of the impression that this is an infection or some sort of sub-acute meningitis or encephalitis, but my neuro again completely denies that as a possibility. So, now that things are starting to open up I will be seeing a 3rd neuro for his opinion. I am not taking anxiety as the sole reason for my issues. This headache is starting to give me systemic issues as I said, muscle twitches/fasciculations (mainly when I am in bed or sleeping), strange episodes of fear accompanied with extreme dizziness and slowness to react/respond, and feeling of body parts vibrating/or shaking (you don't actually see the shaking, it just feels like a vibration in the body).

I will keep you updated on my situation. Of course anxiety is very much a factor now for me given how I feel. I am a 35 year old female who was healthy and very physically active prior to this starting and I just want to go back to that life. Let's hope we can get some answers and some relief soon!
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Avatar universal
Hi Birka123, did you ever find any relief? I am LITERALLY going through the exact same thing almost to a t as you are. It's been happening since mid Feb with what started as an intense ear pain and dizziness that woke me up in the middle of the night. A few days later I had terrible sinus pressure and felt sick, which led me to the  doctor who prescribed me antibiotics for a potential sinus infection and flonase for my nose. I took the 10 days of antibiotics and thought I was getting better however I kept waking up getting lightheaded or dizzy in the middle of the night along with debilitating headaches, weird facial spasms on one side, slight numbness on one side of my face sometimes, a slight roaring in one ear on one side sometimes, and a weird head sensation that wakes me up from sleep full of pressure and makes me think I am going to drop, seize, spazz, something. Terrifying. I also have a lot of muscle / nerve twitching on my head and by my ears. My doctor then put me on a round of steroids which seemed to help for a few days. Then back to the same symptoms I had. She then ordered an MRI angio of my neck and head with contrast. Those came back normal. I'm still waking up dizzy sometimes but she is convinced it is not vertigo or BPPV and said my ears are clear too. She just for the second time put me on steroids which I have a few days left to take. I was referred to an ENT which I am going to on Tuesday. I do not know what to expect or if they will be able to help my weird symptoms and ear sinus pressure I am still having. I am 27 years old and have never had any health problems. I feel so anxious and stressed and panicked because of the fact that this is severely affecting me and I don't sleep. I have come to hate the night time. I feel it all gets worse when I lay down.
Helpful - 1
Hi Aarnnu2015,
See my response below.
Avatar universal
Hi how are you ? I’m experiencing same seems like , are you better now? Can you tell me what you think you had ? Thank you I hope you are doing well!
Helpful - 0
Hi razzina, I’m not sure what it was. I was put on amitriptyline for a few months and then once the pain subsided I weaned off of them.

I am a lot better now but have recently developed new pain and pressure on that same side, although not sure if it’s connected and not as severe. I’m going to try to do a medical medium cleanse again, as those really do help you feel better. Look it up. It may require a longer lifestyle adjustment but it’s worth it. I hope you feel better.
Thanks so much for writing me back. My headache started much like yours coupled with a vertigo in Nov 2021. Couple things I suspected that could have been the starting cause: neck issue due to me going to PT and doing Chin Tucks, few days before everything started I went to the dentist for a filling, maybe anesthesia or drilling itself could have caused some impact to my nerves and caused the vertigo, or unknown viral or low grade infection in the sinuses. Just like you I went to a few neurologists, headache specialist, ENT, GP and I had done Brain MRI no contrast, MRA, Cervical spine MRI and blood tests and everything came back fine. But I am showing a maxillary sinus cyst. My headache moved into a pressure squeezing type sensation along with panick attacks and anxiety episodes, vertigo, nausea, and then I got COVID. Covid was very bad, all the typical covid symptoms with extreme body aches, nausea, vomitting, severe visual disturbances, vertigo, the head felt like I am having a stroke and etc. Lasted two weeks. Post covid I had a severe gastro issues, malaise, hair loss, fatigue, and the head pressure continued every single day. 1.5 months post covid in addition to headache and nausea and malaise I developed burning tingling, pain, twitching in my legs, hands, bladder. I decided to take doxycycline that I had left over from before as like you I suspected some kind of low grade infection. After taking doxy for 10 days my head pressure went away like 98%, however I still have pain in my hands and legs and tire pretty quickly. I am 42 year old female but feel like 90. I know that covid definitely added to my problems, but I wonder what has started it too. I was stressed out last year, but I do not buy that stress just by itself can cause this. Must be some type of infectious component to that.  You mentioned twitching, did your symptoms ever get to burning and tingling and numbness? How long in 2020 did everything last before subsided? Have you been tested for Lyme? I have and was negative prior to these problems, but thinking maybe to retest again. Was there anything stressful happening or anything specific in your life that might have started the pressure again? How is your posture? Do you work with the computer a lot? Did they ever find a cyst in your sinuses?
Avatar universal
Hi @auntijessi, thank you for your response.

I will explain my motivation behind seeking different opinions. I was a totally normal, healthy functioning human being until this suddenly hit me AFTER I started doing nasal rinses. Now, I only did maybe 5-6 of them total (before I stopped completely) and I was using spring water, which the Netipot instructions said was ok. However, I later read that some spring water is not filtered and that in very rare cases there could be different bacteria present that can move to your brain. That was my biggest concern. Since this isn't something that will necessarily be visualized on an MRI I was asking then for a possibility of other testing. As I said, none of the medication solutions have been working so far. The pain and pressure in my head are now constant, and it gets worse at night preventing me from sleeping. As I also stated, Valium and muscle relaxants are doing very little to help. I basically don't sleep. I did email the water company (Poland Spring) and asked them about their filtration method, which complies with the recommended CDC suggestion on the type of filtered water that can be used for nasal rinses (micro-filtration). So technically speaking that should have not been the issue. I do worry that the water company was sued recently for not disclosing their methods of sourcing the water (something I found out after the fact of course), anyway, something I never envisioned would lead to such a massive problem. Again, my logical brain understands that even with all of this my chances of getting a brain infection are miniscule and that I am more likely to be hit by lightning or win the lotto, but nonetheless here I am, in pain and struggling to keep going.

Just to be clear, I am not someone who would self-harm, I am just concerned given how drastically my life has changed overnight. I was always a happy person, I am only 35. This completely changed my outlook on life and is a very debilitating condition. I hope to find some answers soon as well.
Helpful - 0
Ohhh got it. That makes sense. Thank you for the explanation.

I would think that if you had a brain infection of some sort that your brain might have some swelling - again, not a doctor, but I would imagine they could see that on an MRI. Also, if you did blood work, I'd have to imagine that would show up.

People underestimate the impact of migraines and other types of headaches on their life. I'm sorry you're going through this, and doing it alone right now, in the midst of everything else.

I would suggest checking your home for mold. You can buy an inexpensive test kit at Home Depot or another hardware store for under $20. It isn't as thorough as getting a professional in, but it could be a starting place. You mention sinus issues started this - maybe there's something funky going on in your home.

Don't hesitate to consider counseling, either. I say that from experience, and compassion, not because I think this is a psychological issue. (I know it's a real physical problem for you.) Living in pain changes who you are, as you know. Counseling can help. There are all kinds of online options now - bigger companies like BetterHelp and TalkSpace, and with covid, lots of smaller agencies and individuals are starting to turn to this.

207091 tn?1337709493
Why are you thinking infection?

I'm not a neuro or ID specialist (or even a doctor - just a decades long migraine sufferer), but reading through it, I never thought infection.

You've had an MRI, two in-person opinions, and a virtual consult.

The only thing I'd suggest is if they haven't done any yet, is to get some blood work done to make sure nothing looks abnormal there. If you've had that done, and nothing showed infection, I don't know that you need a spinal tap, which is a very invasive and painful procedure.

After the first neuro, you were feeling good enough to run and work out. Did exercise trigger migraines?

I guess I'm a little confused as to why you keep seeking other opinions. I understand you aren't feeling better, but by seeking other opinions, you aren't getting any continuity of care, which is really helpful with migraines.

You say that you and your family are both concerned with your well-being. I'm not sure what that means? Are you thinking of self-harm? Your mental health? An infection spreading?

If you're thinking of self-harm, you can call the National Suicide Prevention Lifeline
1-800-273-8255 or text the Crisis Text line by  texting HOME to 741741.

Migraines and neuralgia, of which you can have both, are both hard to treat. I hope you find some answers.

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