Hello- New Member Curious about Sinusitis and VM Connections

New here, let me introduce myself šŸ¤
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Hey yā€™all- new member here. Iā€™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 Iā€™ve researched (which has been a TON) the sphenoid sinus is very rarely infected and pretty difficult to treat. Iā€™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. Iā€™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 doesnā€™t want to prescribe more due to risk of liver damage. Iā€™m seeing a different ENT tomorrow who is very well reviewed and Iā€™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 Iā€™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 :frowning: )

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? Iā€™m really worried that I will be told tomorrow that I need surgery on the sphenoid sinus which I simply canā€™t afford (itā€™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 thereā€™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 canā€™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. Iā€™m currently waiting on a magnesium glycinate order to be delivered. Itā€™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 peopleā€™s experience, thoughts, suggestions, etc. Thanks again!

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Hi and welcome. Sorry to hear you are suffering.

Iā€™d encourage you to use our excellent Search facility to answer your questions. Insert any keyword and away you go, you will find a huge amount of information right across the board rather than just waiting for the few (numbers-wise we are currently very quiet) current participants to get back to you, As you will find with VM thereā€™s rarely a specific answer. Almost everything is an individual experience. What works for one makes another far worse. For the female of the species there are very often strong hormonal links and most complain of increase in symptoms around their period. Again please Search the site. The main aim of the preventative strategy is to raise tolerance levels as high as possible in order to reduce flare ups however periods do tend to remain a strong trigger irrespective.

When it comes to links to sinuses again itā€™s a very common occurrence. There are many references. Many people spend years thinking they had sinusitis or sinus headaches and eventually itā€™s put down to VM. No doubt once you do much research whichI do recommend as itā€™s not a well known condition amongst medics and we each need to be our own advocate you will probably read medical papers as I have that suggest thereā€™s no such thing as a ā€˜sinus headacheā€™ itā€™s VM! Iā€™m no medic and I m certainly not saying you donā€™t have a sinus problem. The specialist knows much better than me however failing all else from my own experience I think I can safely say any inference with any part of the anatomy which can affect the vestibular system can adversely affect VM. Iā€™m thinking Hayfever personally but Iā€™ve a friend who has certain sinus issues and they give her VM like symptoms too. When it comes to Searching sinus on here suggest you start by searching @mav, Karen (whose no longer an active poster incidentally) has left information you may find interesting though be warned it may, like much else about this condition, throw up as many questions as answers!

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Thanks so much for your reply! I will definitely start searching the site and hopefully will find some more ideas to research further. Itā€™s too bad the number of participants are low now (Iā€™m guessing many use fb groups now). Facebook gives me so much anxiety so Iā€™m really trying to find an active non-social media based support group, but maybe Iā€™m just a decade too late haha. Either way, it seems, as you have said, that there is still much info and perspective that can be found on this site. Cheers

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A large group migrated completely over to FB about 2014ā€™ish and this site almost ceased functioning. Later it was revived and itā€™s been thriving again for some years. Obviously Iā€™m biased but you couldnā€™t find a friendly bunch of like minded beings. No aggro here. We are far too specialised to ever have huge numbers of active members at any one time but we have a strong base and our regulars are warm, kind people. Some also do FB too for sure but we are still a very active site which incidentally is often recommended by various specialists in the US to patients.

Searching the archive offers a far more representative selection of comments than relying solely on whoever happens to be about currently. The fact that some of the posts may be ten years old doesnā€™t distract from their relevance. They still stand as individuals own experience. And you are more likely to be able to access a complete story with a beginning, middle and something approaching an end result rather than a brief snapshot in time. Karenā€™s story is just an example.

Do please go through the Welcome and Wiki sections. I didnā€™t mention them earlier because I was trying to respond more directly to your individual questions.

Btw Checking out the Visitors Map will give you some idea of actual visitor numbers.

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Hi Mara,
Welcome to the forum, so glad you found us!
I am not as active as I once was but do still check in a few times a week.

My personal story and as Helen mentioned, a large percentage of others with VM started (in retrospect) many years ago I suspect with my constant ā€œsinus issuesā€. I have battled sinus headaches, sinus infections and sinus head / ear pressure for many years. My daddy did too, so I just chocked it up to genetics.

Once VM hit (like a ton of bricks one morning January 9, 2018) and I got my first MRI, I was shocked when the ENT said my sinuses were clearā€¦ how was that possible, with all the pressure and feeling of just complete blockage?!?! I just knew that would be the cause of whatever was wrong in my head.

Anyway, fast forward a long - quite horrible year laterā€¦. Finally getting a diagnosis and beginning treatment. Over the course of treatment for VM with the preventative medicationā€¦ my ā€œsinus issuesā€ that I had for decades have completely disappeared.

Obviously your situation sounds very different. I hope this new ENT your seeing will help clarify next steps for you.
Have you started any pharmaceutical treatment for VM?

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Hello and welcome. Glad you found this place to get support and commiserate.

I too have sinus issues. Not sure if or how much my sinus stuff impacts my VM. Iā€™ve had 2 sinus surgeries in the past, the second after my VM problems started. I was really hoping the surgery would cure my VM, but it didnā€™t. However, the second surgery was still helpful for my sinus problems.

Since the last surgery I nasal rinse daily (and add budesonide which is a corticosteroid prescribed by my doctor). The surgery took care of the swelling and blockage and the rinsing/steroid combo has prevented recurrence. I use Neilmed bottles to rinse vs a neti pot. You are probably already doing this, but make sure you are using only safe water (distilled or previously boiled and cooled, etc) so you arenā€™t making any problems worse or causing new ones.

My technique may be helpful in your situation. When I rinse I shoot about 1/2 the bottle into one nostril and quickly pinch my nose to hold the solution in there. Then I go lay down flat on my back on the bed (no pillow, just flat surface), let go of my nose and tilt my head back and forth like Iā€™m looking left and right. I will stay in one position for a few seconds and then move to get it somewhere else. I also look straight up at the ceiling some. I have tried doing this with my head hanging off the bed also, but that tends to aggravate my balance on the best of days. When Iā€™m ready to stand up I just pinch my nose first and then get up and head to the sink. You would think this would drown you, but I find I can breath around it with my mouth open. Some sort of ā€œself waterboarding gymnasticsā€ (as I call it) like this is probably the only chance of getting rinse back that far in my opinion. Iā€™m honestly not sure if it will get where you are wanting for sure, but I think itā€™s worth a shot.

The fullness I get in my ears that feels like fluid is in them has been helped quite a bit by a daily antihistamine. Thatā€™s an easy thing to try as well if you arenā€™t already.

Hope you can find a great ENT to help you out and you get feeling better soon.

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Like Renee @Naejohn I started with multiple rounds of antibiotics for sinus infections I never had. I had MAV. Once MAV was weā€™ll controlled (about 2 years) my sinus issues and ear issues disappeared. I donā€™t know if you can control MAV without pharmaceuticals. I couldnā€™t. I wish you the best of luck.

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Welcome Mara,
I left Facebook three years ago. The group I was in was for an unrelated malady, Keratoconus. I found them to be unfriendly, unsympathetic and very territorial. Since leaving Facebook I have not missed them a bit. You will likely find this group to be friendly, informative and compassionate, as I have.

The sinusitis angle is one I had not associated with MAV. I have frequent bouts of sinusitis and require seasonal doses of antibiotics, Flonase, and decongestants.

Iā€™m looking forward to your life story. Most of the regulars here have posted theirs. You will find them here.

https://mvertigo.org/c/personal-diaries/26

You can post your own by opening the template and filling in the blanks. James @turnitaround can guide you to the templates when youā€™re ready.

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Thank you all for the replies. Ah yes, it seems like a common occurence based on what Iā€™ve read on here to wait a long time for a correct diagnosis. Brain and inner ear health can be so tricky :confused: What I found strange in my case is that Iā€™ve never had any sinus issues or pattern of headaches or migrainous symptoms (Iā€™m 27) that I could identify until all of this started at once. I think thatā€™s why Iā€™m looking into the possible connection between the sinus and vm issues because they seemingly appeared together overnight.

A naturopath was the first person I spoke to who asked about my family history and I remembered that my mother and grandmother both deal with migraines. They also are both very allergic people. She thinks there may be a genetic link and that the sphenoid sinus infection may have set off a mast cell inflammatory cascade that may have triggered the vm/vn. The sphenoid infection is seen on CT and MRI on the righy side and all my strange pins and needles feelings, burning sensations, and head pressure is on my right side. Iā€™m also getting more sense of fullness and a whirring noise in my right ear.

@a54321 Thanks for the irrigation suggestion on position. Iā€™ve been trying to find studies on successful positions to irrigate the sphenoid sinus and what youā€™re describing is similar to the method I find where they had the head tilted almost upside down over a bed or couch.

@Naejohn I havenā€™t started any pharmaceuticals yet except the round of Augmentin and I take daily sudafed. Iā€™m curious what the ENT might suggest today in terms of meds. He is supposedly pretty familiar with vestibular disorders. Iā€™m honestly scared to take most of the meds Iā€™ve seen prescribed for vm. Iā€™m sooooo sensitive to drugs and prone to panic attacks that Iā€™ve always self managed with grounding and breathing exercises, but I worry the meds might push me too far. On the other hand Iā€™m so desperate to get these symptoms under control.

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This is so common for us MAVā€™ers. I have said it hundreds of times and have been frozen in fear of medications. In retrospect, my only regret is not starting treatment sooner.

I do hope your new ENT visit goes well today and he has the answers you need. Please do keep us updated!

PS> , while I am thinking of it: I donā€™t know if youā€™ve poked around on Dr Hainā€™s website at all, but here is the link in case you havenā€™t. It is a wealth of information which includes references to sinus issues, of course lots of info on Vestibular Migraine.
https://dizziness-and-balance.com/disorders/central/migraine/mav.html

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Many people myself included could say theyā€™d not previously had any experience of migraine or migraineous symptoms. The specialists go much on history and always relish the familial connection which you definitely have. I donā€™t even have that and never had my first recognisable migraine until I was maybe 13 years into VM and it had long turned from episodic to chronic.

Could be a strong indication they are both part of the same condition.

@flutters sums it up nicely.

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For the sake of brevity I omitted the monumental lifestyle changes, multiple diets, supplements, devices, etc. I tried and adopted or abandoned. I also failed to mention just how many med trials it took over how much time. The info is there. Mileage varies.

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Well this ENT today was a night and day difference from the last ENT I saw. He actually asked me questions about all my symptoms and did a thorough exam. I gave him the old ct scan I had done and he said it was pretty poor resolution (I had it done in a rural, small emergency room) and ended up doing a high resolution scan on his CT machine for me free of charge. He found a cyst in my right sphenoid sinus that just wasnā€™t clearly defined as such on the old ct scan. He went over the scan with me and I could clearly see the cyst that took up over half the cavity space of my sinus. He explained how it is almost certainly benign as the edges are very round and smooth but that itā€™s definitely getting too large and pushing on the boundaries of the surrounding bone. He said I really need surgery or it will likely grow to the point of causing serious complication if it pushes through the bone towards or into my brain. He thinks itā€™s likely been growing there for many many years and has finally reached a point of causing problems. He wasnā€™t sure the cyst has triggered the vestibular migraine but definitely thinks I have VM and thinks itā€™s possible the surgery to remove the cyst may resolve my symptoms. Iā€™ve never had surgery and am pretty anxious about it but heā€™s very well reviewed and has done this particular surgery many times over the last 25 years. On top of that, he was incredibly compassionate about my financial state and offered to let me do a very affordable payment plan for the surgery. I am going to be scheduled in for either next week or the following week. Iā€™ll keep people updated. Iā€™m sure it would be interesting news if this surgery resolves the VM symptoms. He said itā€™s also totally possible they are unrelated and that I simply have come down with hormonal VM. Fingers crossed this brings some relief (personally, I just feel like my 2 conditions are related). And if anything, the surgery will certainly will prevent serious if not fatal complications down the road.

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Mara, I will pray for you.

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Might sound strange but Iā€™m pleased the specialist has found something obvious that can be dealt with. Happy for you that itā€™s got a good prognosis and I trust it may just resolve all your vestibular difficulties. It may yet turn out far less of a problem than a VM diagnosis. Have no fears over your first ever surgery. You are bound to be nervous in anticipation but try not to worry. You wonā€™t know anything about it. You will be fast asleep throughout.

Looking forward to reading your update in due course. As you say ā€¦

MAV and sinus symptoms?

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It is great that you found an ENT whose diagnosis makes sense to you @OffBalanceOffGrid.

After reading your posts, I wondered why you had a cyst forming in your sinus and I remembered a sinus problem I experienced about 8 years ago. At that time I worked in an office that had mould on the ceiling and I started to have bad sinus problems. I finally went to an ENT and he told me that it could be related to the mould. He wrote a letter to my employer requesting a mould-free office for me. As you can imagine, I was not popular with my employer, but they gave me a different office. My sinus problems disappeared.

I am telling this story because you said:

I know that building a house/cabin can often create a lot of dust and I wonder whether that may have contributed to your sinus cyst? It might not be the case, but I think it is worthwhile thinking about.

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@Katharina Iā€™ve definitely been thinking about the mold question. We also live deep in the woods right next to a creek so its just a damp environment in general. I definitely wasnt as careful as I should have been with wearing respirators while building. The naturopath I spoke to also was quick to ask about possible mold infection so I think youā€™re definitely on track with your thoughts. In fact, fungal balls developing in the sphenoid sinus is one of the causes of surgery for that particular sinus cavity. Iā€™m actually wondering if a fungal ball will also be found within or attached to the cyst. I should take this mold question more seriously it would seem. Time to research

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I feel the same way. Iā€™m definitely scared but like you said its a definitive problem with a good prognosis that may resolve all these horrifying symptoms. Thank you so much for the reassurances.

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We really hope youā€™re one of the miraculous lucky ones that have a one and done experience. Not having MAV is one of the best wishes we can offer. That said, if you do, you are always welcome in this family.

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Thank you, @flutters. I really appreciate the kindness and support and information found in this group.

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