Hey y’all- new member here. I’ve been searching for a non-facebook vestibular support forum and glad to be here. My symptoms started about 2 and a half months ago seemingly out of the blue. I woke up one morning dizzy (non-spinning) and extremely fatigued, and have been battling a myriad of symptoms ever since. So far, an MRI and CT scan have found right-sided sphenoid sinus disease, DR found fluid in both ears, and they suspect I have Vestibular Migraine and/or Neuritis as well. From all that I’ve researched (which has been a TON) the sphenoid sinus is very rarely infected and pretty difficult to treat. I’ve only been to one ENT so far (I have extremely limited $$, live in the US, and am not on health insurance) and he was a huge disappointment. I paid $150 to see him and he talked to me for less than 5 minutes and just prescribed more antibiotics, which, according to all the published journals I can find on the subject, has very little chance of treating sphenoid sinusitis.
The antibiotics have so far done nothing for me. I’ve had a few good days, but for the most part I have 24/7 symptoms of fluctuating levels of dizziness, brain fog, balance issues, vision blurriness, extreme sensitivity to sunlight, fatigue, derealization feelings of being in an alternate reality/dream-state, pins and needles feeling that comes and goes on the right side of my head and face, and head pain that will start from very tight, knotted muscles around base of my skull. I took almost 2,000 milligrams of Augmentin (antibiotic) for a month with no results. My primary physician doesn’t want to prescribe more due to risk of liver damage. I’m seeing a different ENT tomorrow who is very well reviewed and I’m hoping beyond hope that he will be interested in having a real discussion about my symptoms and treatment plans.
The only thing that has shown promise for me so far is using daily essential oil steams that will reliably cut down on migraine symptoms significantly, but unfortunately, it will only subside or take away the symptoms for about 20 minutes to an hour max and then the migraine with all its insane symptoms comes right back. I use the oils as a heated steam and with a diffuser heavily throughout the day. This use of them is based on my research of published studies on the use of pure-plant oils such as peppermint, lavender, and holy basil to ease headache and migraine symptoms. I was skeptical at first but they really have been helpful. I have also found that I must stay hydrated. If I’m not constantly drinking water and/or herbal tea throughout the day I definitely suffer much more. I also do saline nasal irrigation every other day (mostly in the case that the infection spreads to other sinus cavities as I understand its not likely a rinse will reach the sphenoid cavity )
My vestibular migraines definitely seem to be amplified right at the end of my menstrual cycle. I would love to know if anyone else with this pattern has found ways to address this pattern.
Does anyone else have experience with sinus (especially sphenoid sinus) infection as cause of vestibular neuritis/migraine? And did you have to treat the underlying sinus problem first? I’m really worried that I will be told tomorrow that I need surgery on the sphenoid sinus which I simply can’t afford (it’s thousands of dollars in the US).
I am so desperate to get my life back. Until this happened I have always been a very active person and I am heartbroken by my new reality. My partner and I live in a off-gird cabin we have been building since last summer, and while we thankfully finished the most important parts before I got sick, it is incredibly depressing to look at the unfinished aspects of our home and know that right now there’s nothing I can do about it. We used to take long daily walks in our forest and now I feel lucky if I can make it down our steep walking trail to our truck to be able to go to town (most days I can’t). I am doing as much research as possible and trying so many angles. I also am researching newer studies into fighting biofilm formations in sinus cavities through use of probiotics strains as a possible treatment. If anyone has experience with this treatment please let me know. I have consulted with a doctor who is also a naturopath and have started a daily regimen of feverfew, ginko baloba, tumeric with perperine, and quercetin. I’m currently waiting on a magnesium glycinate order to be delivered. It’s too early to tell if the supplements are working but I am hoping they will help.
Thank you for reading my long post and I will update after my appointment with ENT tomorrow. I am very interested in hearing other people’s experience, thoughts, suggestions, etc. Thanks again!