“I’m On a Boat” and Other Tales of Vestibular Woe

I’ve been wanting to write a post about my journey through the terrain of vestibular disorders on my way to my hEDS and MCAS diagnoses. This post is a bit of a departure from my others on FatZebraTheory, but I have some things to say and it’s my blog so I can post what I want to! This piece is really geared toward folks with vestibular disorders and migraine. If that’s not you, you can safely skip it.

I have had three diagnosed vestibular disorders, and experience dizziness secondary to my hEDS. I notice that many of us with vestibular migraines (VM), in particular, report experiencing itchy/watery eyes, sinus congestion, runny nose, etc alongside our migraine and dizziness symptoms. To me, those symptoms hint to some kind of mast cell activation disorder (MCAD). Moreover, the first-line treatments for vertigo, dimenhydrinate (Dramamine) and meclizine (Bonine), are both H1 anti-histamines. I am not alone in seeing connection between mast cell activation and migraine. But, based on my participation in patient forums, it seems to me that many neurologists are not familiar with MCAD and thus aren’t considering it as a possible cause for VM.

http://ohtwist.com/what-is-mcad

Please remember, I am not an MD. I am simply sharing my own experiences and opinions here. A bit about my medical history: I had severe ear infections in early childhood that required tubes in my ears, and removal of my tonsils and adenoids. My ears have never been right and I have had ear pain, fullness, popping, and tinnitus my ENTIRE life. But, my hearing has always been normal for my age. My asthma and allergies were diagnosed as a child, but it wasn’t until recently that I was diagnosed with hEDS and MCAS. In my mid-twenties I developed episodic ocular migraines and TMJD. I had had one hemiplagic migraine that pushed me to get better control using acupuncture and stress regulation. IF you have allergies or allergy-like symptoms in addition to your vestibular migraines, this post is for you.

My Vestibular Cup Runeth Over

My first vestibular disorder came when I was 14 or 15. I developed viral vestibular neuritis (VN)–or at least that is what my ENT thinks it was. I remember feeling like the ground was rolling under my feet. My mother took me to the doctor, who diagnosed “vertigo” and gave me some medicine that made me very sleepy but helped. It took me about two weeks to recover from VN, but I DID recover (as fully as I was going to with undiagnosed hEDS and MCAS).

Fast forward 24 years. Election Day, 2016. I woke up and the world was spinning. Not rolling like it was in 1992, but spinning. I stayed home from work figuring it would go away. I was really busy at the time and had a work trip to Montreal planned. The vertigo persisted throughout the trip. When we got back, I decided it was time to see the doctor. I had also developed a low grade fever as well as intense fatigue and malaise. The doctor diagnosed Benign Paroxysmal Positional Vertigo (BPPV). She performed the Epley Maneuver and taught me how to do it at home. When the vertigo finally subsided, I had been spinning for three full weeks.

Once the spinning stopped, I realized I was still dizzy, but in a different way. I felt light-headed every time I bent over and came back upright. If I closed my eyes, I felt like I was slowly rotating to the right. Any bit of exertion left my heart pounding and I felt on the edge of fainting (presyncope). I slowly realized that I’d actually been feeling this way for quite some time.

Unfortunately the BPPV recurred every 4-6 weeks over the next four months. Each episode was accompanied with intense fatigue, malaise, weakness and a low grade fever–like I was sick with the flu, but with no upper respiratory symptoms. I was also having itching (a particular spot on my leg that had been itchy for a decade) and hives. But I didn’t notice these as related in any way that the time. One day a coworker suggested I go see a friend of hers who is a physical therapist specializing in vestibular rehabilitation therapy (VRT). I made an appointment.

The PT assured me that she sees this all the time and got me started with habituation exercises (head shaking). But after a month the VRT wasn’t working, so the PT referred me to an ENT for FULL testing. I had VNG, CDP, a hearing test, and the dreaded caloric test. The results of the VNG and caloric showed moderate bilateral vestibular hypofunction (the inner ear balance organ was not functioning well on both sides). But my balance test (CDP) was not only normal, it was extremely good. The ENT was a bit puzzled and agreed that this had likely been happening for quite some time–my balance was so good because I had been coping with impaired vestibular function for so long. He had no idea why I was having recurrent BPPV, but seemed unconcerned about. Instead he ordered an MRI which ruled out a bunch of scary things and referred me to a neurologist to be evaluated for vestibular migraine. He also suggested I get a lumbar puncture to check my intracranial pressure.

At first I was dubious about the migraine suggestion. I wasn’t having migraines … at least, not like the ones I had experienced previously. But within a few months I started having more recognizable migraine symptoms (actual headache pain, but also light and sound sensitivity and difficulty speaking). During these attacks, I would get so dizzy I felt like I was tumbling down a white water river. I was nauseated all the time, but I am fortunate to have a strong stomach. Over the summer things got so bad, I decided to see the neurologist. After a particularly bad episode I also saw my PCP and began my elimination diet. She prescribed venlafaxine (which I’m now trying to taper off) because it is supposed to help with both anxiety and vestibular migraine.

When I finally saw the neuro, thank heavens he didn’t feel a lumbar puncture was necessary. Now that I know I have hEDS, I am aware that a lumbar puncture would have put me at risk for a CSF leak, which could have created an huge mess and confused matters further. The neuro felt that I almost certainly had VM and that the dietary changes I had made and the venlafaxine would bring it under control. So there you have it, VN as a teen, recurrent BPPV, and VM. It’s like I was at the Oprah show when she was giving out vestibular disorders. I was hoping the the VM diagnosis would be the end of it, and I would start to get better.

Some Flamingos are Also Zebras

But things only got worse. Much worse. I started eating more of some things, like peanut butter, to replace the foods I had eliminated. I began to hurt all over. I had always experienced a lot of pain due to undiagnosed hEDS, but this was a significant spike above my normal levels of pain. I started having allodynia, where even light touch or the feel of my own clothing would hurt. I had these bizarre stabbing pains that would begin during a VM attack and would migrate all over my body leaving me writhing and moaning in pain, and spinning out of control. And then there were the hives. My eyes also burned and watered. Again, these symptoms felt so insignificant in comparison to everything else, I hardly registered them and didn’t report them to the doctor. By this point, I was having 3-4 migraines a week. The postdrome of one migraine was prodrome of the next. I saw my PCP again and this time she suggested I was suffering from mold illness.

There were good reasons to think this might be the case, and some testing (that I’m not sure is well validated) showed I was positive for three different types of mold. So we began following a modified version of the Shoemaker Protocol. I also came back positive for anti-nuclear antibodies during this time, which is a sign of autoimmune disease. So, I went to see a rheumatologist. It was that doctor who set me on the path to getting my hEDS and MCAS diagnoses. He ruled out autoimmune and then refused to treat me. But, he gave me the words I needed to be able to research and begin, at last, to connect the dots. While both hEDS and MCAS seemed extremely likely based on my medical history and symptoms, at that point it was MCAS that seemed far more urgent.

It turned out those hives were an important piece of the puzzle! I read Lawrence Afrin’s book, Never Bet Against Occam, and I learned so much! I learned why starting Singulair (a leukotriene inhibitor; leukotrienes are released when mast cells are activated) dramatically changed my life for the better, 20 years earlier. I learned that things probably got worse when I changed my diet because many of the food substitutions I made were higher in histamine. I learned that mold illness could have been aggravating mast cell activation in my body, but that based on my history of treatment resistant allergy and severe asthma, I had probably always had MCAS. I learned why I felt sick when I had no cold symptoms (mast cells activate when you are sick, too). I learned that, in addition to histamine, mast cells release prostaglandins which are known to play an important role in migraine. Prostaglandins also play a role in menstruation which is why many people who menstruate experience migraines during their periods. I sometimes describe living with MCAS like being on the first day of your period, everyday (plus life-threatening allergies). The best news was that aspirin tends to be good at helping with prostaglandin related symptoms for those who can tolerate it–and I do!

With my PCP’s blessing, we stopped the shoemaker protocol and I started H1/H2 antihistamine treatment. BOOM, the migraines stopped for 2 months right out of the gate. I slowly added in quercetin, luteolin-based supplements, aspirin, probiotics, and vitamin C for mast cell activation symptoms. I am not super strict about histamine in my diet, but I am mindful about things like peanut butter and tomatoes and I use DAO when I know I’m going to eat something high in histamine. I also gave up alcohol. Eventually I decided to give low dose naltrexone (LDN) a try to see if it would help. I definitely feel better (more energy, less brain fog), but it is hard to say if it is the LDN helping with MCAS symptoms or hEDS symptoms.

My migraines are not gone completely but they are never as bad as before I began MCAS treatment. I went from 3-4 migraines a week to between zero and one per week, depending on environmental factors. Right now I’m in a lull (a remission?). It’s been 2 months since my last full blown migraine.

I am not going to do a deep dive into testing for MCAD, here. But, let me say that it is tricky to get confirmation in blood/urine for the vast majority of people with symptoms. I did do some testing, but due to lab error, my results were unreadable.

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases

I was doing so well with the first-line treatments, I gave up on objectively proving I have MCAS. I wanted to get on with my life. And my doctor is fine with a presumptive diagnosis based on positive response to treatment. I did get a formal hEDS diagnosis. And due to my dizziness and vertigo symptoms, I was fully evaluated for POTS, CCI, and Chiari malformation, each of which can cause symptoms similar to those I experience. These were ruled out in my case, but I would suggest anyone with VM and symptoms of hypermobility be evaluated for these conditions in addition to MCAD. CSF leaks, as I mentioned above, and intercranial hyper/hypotension can also produce similar symptoms. It’s a jungle out there! In my case, I was only diagnosed with orthostatic intolerance, not full blown POTS, and I’m blessed to be negative for CCI and Chiari. hEDS and MCAS are enough, thank you very much!

Getting Off the Boat

But what about the dizziness? Well, that’s been a bit harder to get rid of. The frequency of my BPPV episodes has decreased considerably (2-3 episodes a year). It is also crystal clear (pun intended) that my BPPV episodes are directly related to MCAS flares. For example, when I bought a new mattress, I reacted to the off-gassing with my typical mast cell activation symptoms and a BPPV flare. The dizziness I experience between BPPV and VM episodes was also still with me for quite some time, though it was improving.

In the mean time, I started a joint stabilization physical therapy protocol for my hEDS. As I progressed, we found that the dizziness was holding me back. So I was referred yet again for VRT this past fall. This time, I saw an EDS-aware PT who knew that head shaking exercises would not be a good idea without strengthening my hypermobile neck. This round of VRT has been a revelation. Having a vestibular PT who understands EDS and MCAS has helped me put together the final pieces of the puzzle.

Some of my dizziness is due to hEDS (lax eye ligaments, perhaps lax eustachian tubes), so we started working on strengthening my eye muscles first. Some of my dizziness is due to EDS related dysautonomia/presyncope/orthostatic intolerance, so I need to use electrolytes and compression stockings to help keep the blood flowing to my brain. Some of my dizziness is due to MCAS-driven BPPV, so I need to work to aggressively reduce inflammation during BPPV episodes and properly execute the Epley Maneuver. Some of my dizziness is MCAS-driven VM, so managing mast cell activation to prevent migraines is crucial. Though I don’t have a formal diagnosis, my PT seems to think I may also have Mal de Debarquement Syndrome (MDDS), too. And it’s true, I often feel like I’m on a boat. Luckily there are techniques for learning to get off the boat that are working for me. What a complicated mess! But there is light at the end of the tunel, and no it is not an oncoming train!

I had been puzzled as to how a mast cell reaction could physically knock crystals loose in the tiny semi-circular canals of my vestibular system. My awesome PT cleared this question up as well. She explained that the otoconia (ear crystals) that come loose in BPPV, are actually suspended in fluid in the inner ear. The activation of my mast cells and the release of the chemical mediators likely change the chemical make up of that fluid making it easier for the otoconia to dislodge. Now I finally get it!

I also didn’t realize is that it is possible to have multiple otoconia loose at once. Being patient and waiting for at least 60 seconds after the spinning stops at each turn in the Epley and repeating the maneuver multiple times a day is absolutely critical. Lymphatic massage has been helpful at moving the fluid out of my head during a BPPV attack.

In addition to helping me better understand my condition, this round of VRT has finally started to help with my daily life. VRT didn’t work the first time because we weren’t treating underlying causes. Now that my MCAS is treated, the VRT can actually start to work. Though I’m doing better, here is no cure for MCAS or hEDS. So I will need to manage this for the rest of my life. I will probably have to deal with some amount of dizziness forever. But that’s okay. With things under better control, I know I can cope. The other day, I had a really high spike in my pain levels and a whole bunch of subluxations (hip and elbow). But I was able to cope and go about my day because I wasn’t dizzy. For me, it is the dizziness that really puts me out of commission.

MCAD in the Differential

I want to end with a couple side-by side comparisons of Migraine symptoms with MCAD symptoms and migraine diet with low histamine diet. Based on my own experience, I feel strongly that MCAD should be in the differential diagnosis for migraine. First of all, we know that mast cell mediators like prostaglandins play a role in migraine. Second, according to the American Migraine Foundation, Asthma and Allergies (both of which are associated with mast cell activation) are highly comorbid with Migraine.

In the recent American Migraine Study II, 40% to 70% of respondents with migraine had comorbid allergies. Other studies have reported that people with migraine are 2 to 3.5 times more likely to have comorbid asthma, especially if they have a parent with migraine and asthma.

https://americanmigrainefoundation.org/resource-library/sinus-headaches/

It matters if migraine is a primary or secondary diagnosis. Treating my migraines as primary, when they were actually secondary meant that treatment was never going to work, and that I was just going to continue to suffer and become more impaired. So let’s look at the symptom overlap between the two conditions. I’ve taken the symptom lists for The Mastocytosis Society and from Migraine.com and compared them. The first row isn’t meant to imply overlap, but you can see the overlaps emerge after that.

Mast Cell Activation Symptoms vs Migraine Symptoms

MAST CELL MEDIATOR SYMPTOMS	MIGRAINE SYMPTOMS
Anaphylaxis	Pain on one side Vision changes, blurred vision Aura Food Cravings
Flushing of the face, neck, and chest	Fever
Itching, +/- rash	[allergy comorbid with migraine]
Hives, skin rashes	Hives
Angioedema (swelling)	Puffy eyelid
Nasal itching and congestion	Dry Eye Watery Eyes, Stuffy/Drippy Nose, facial pain.
Wheezing and shortness of breath	[asthma comorbid with migraine]
Throat itching and swelling	[allergy comorbid with migraine]
Headache and/or brain fog, cognitive dysfunction,	Throbbing, pulsating pain Light sensitivity Sound sensitivity Difficulty concentrating Sensitivity to smell Fatigue
Anxiety, depression	Mood changes
Diarrhea, nausea, vomiting, abdominal pain, bloating, gastroesophageal reflux disease (GERD)	Nausea Diarrhea – constipation
Bone/muscle pain, osteosclerosis, osteopenia, osteoporosis	Weakness Neck pain Numbness, tingling
Light-headedness, syncope/fainting	Feeling lightheaded or dizzy Vertigo
Rapid heart rate, chest pain
Low blood pressure, high blood pressure at the start of a reaction, blood pressure instability
Uterine cramps or bleeding

As you can see, there is a LOT of overlap here. Of course not everyone will have EVERY symptom. But it is clear that if you have migraine and allergy-like symptoms, it is worth considering whether MCAD may be the primary cause of your migraines. The treatments for MCAD will be quite different than for migraine, so talk with your doctor.

Migraine Diet vs Low Histamine Diet

Sufferers of both migraine and MCAD are advised to adopt special diets and to identify their triggers. So here are some general lists of common food triggers starting with MCAD/histamine intolerance, followed by a migraine diet.

Again, we can see lots of overlap here. Both diets recommend avoiding aged and fermented foods, alcohol, citrus, etc. To me the fact that migraine diets look so much like low-histamine diets, and work for so many migraine sufferers is yet another sign that, for many people, their migraines may actually be secondary to MCAD. I am not suggesting that all migraine suffers have MCAD. But simply that some of us do, particularly those who’s migraines aren’t responding to traditional treatments.

Thanks for making it this far. I wanted to share this with the hope that it might help someone else suffering from chronic vestibular migraines or atyptical BPPV to connect the dots and get on the path to better treatment. I see so much hopelessness in the vetibular patient community. And I really, really understand why. But I want to offer assurance that there are answers out there. Maybe your answers are on this page. Maybe they’re not. But there are answers somewhere. Keep searching!

As a reward for making it to the end, here my vestibular anthem (CW: curse words).