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.
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.
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.
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!