In the Summer of 2017 my world was flipped upside-down. I say flipped as that is exactly how spontaneous and violent it felt. I was sitting at my desk in work when all of a sudden I leaned forward and grabbed the edge of my desk to steady myself. I placed my head on the desk still grasping it tightly. I couldn’t look up or down. I felt as though I was at sea with no compass in a violent storm. I wasn’t sure if the room was spinning or I was spinning internally. Everything was out of sync. If anyone had said the word migraine at that point, it would not have resonated.
Diagnosis And Misdiagnosis
Regrettably, it took two years to get a diagnosis of vestibular migraine (VM) and PPPD (persistent postural-perceptual dizziness) from that day. Initially the doctor on call said it was vertigo – a vague diagnosis. To add insult to injury he said it was probably as a result of my age. I was only 41. He prescribed me Serc (betahistine) and Stemetil (prochlorperazine) and I sat on my sofa for three full months waiting for this ‘vertigo’ to lift. I was fully housebound at this stage, unsteady on my feet and constantly dizzy. Luckily the children were on summer holidays and old enough to understand.
After three months an ENT diagnosed me with vestibular neuritis from which my vestibular system and brain hadn’t yet compensated. I was relieved to have a name for my symptoms. He gave me no medication nor a follow up appointment and suggested I do vestibular rehabilitation therapy (VRT). I threw everything at my exercises doing VRT three times daily. Initially I felt some improvement but then it plateaued. Another six months went by and I still walked veering to the right, fell over easily and felt dizzy 24/7. I walked in my bare feet to feel the ground beneath me for balance and if I closed my eyes I had no sense of balance and would fall over…..to the sound of the giggling of my children.
From September, I walked my daughter to and from school each day and I believe that this helped me hugely as I had given up all other exercise. I rarely spoke to other parents at the school gate as my gaze would always fall…..I literally couldn’t make eye contact. This shy woman who swayed like a drunk as she walked and kept her head down seemed like a shadow of my former self.
New Symptoms
When new symptoms of stuttering and slurred speech developed I was heartbroken. The children laughed at my stutter and how my brain fog made me forget the simplest of words. I often laughed too with them to make light of the situation but inside I was distraught. I had always been a strong communicator and during my career had given interviews on radio and TV and had given presentations in front of large crowds. Now I spoke quietly with a stutter. I felt I had lost my personality. I had already lost my job, financial stability, given up my social life and rarely saw friends. I was afraid to get on a plane and so travel had ended too. Thinking that the illness had now even taken my personality was the final straw.
Becoming An Advocate
When my appointment with a neurologist came around after a year-long waiting list he diagnosed ‘vertigo’ or BPPV. Here we were back at square one. I knew I did not have BPPV and it had been ruled out earlier. I was furious and decided then that I had to become my own advocate. I would have to fight to get well again. I came across Migraine Strong Facebook Group where I poured my heart out. I wrote that I had no diagnosis after two years despite constant dizziness. Alicia, Eileen, Jennifer and the gang were great support and then, in an example of when social media works best, a fellow Irish woman spotted my post and offered to send me a private message.
Guardian Angel
Clare and I shared our stories and she told me about a physiotherapist with expertise in VRT (Sheila Barrett) who had helped her. I was quite reluctant to travel all the way to Cork to see yet another expert and reluctant to spend more money on VRT but Clare offered to meet me at the train station, drive me to the appointment and back again to the station. Guardian Angels exist!
When I met Clare at Cork station she was wearing her migraine friendly tinted glasses and looked radiant. She told me she was back driving and swimming and had even gone to a concert recently (albeit wearing ear plugs). I was in awe. After taking a full medical history and doing various tests with infra-red goggles, watching me walk and watching my gaze closely I was diagnosed with VM and PPPV. My years of chronic sinus had most likely been chronic migraine I was told. My years of popping medication daily, far more than the recommended dosage had most likely caused rebound which nobody had ever explained to me. My sensitivity to sound and light, smells and foods now made sense. People had always said I was over sensitive….now I had an explanation. With the new diagnosis I started the Heal Your Headache (HYH) diet and did the exercises Sheila had given me. I finally managed to look up and down without feeling nauseous or falling over.
Treatment Plan
From the advice of the Migraine Strong treatment pie, I also take supplements such as Magnesium and Vitamins B and D. When nausea comes on I take ginger sweets. I also take Effexor, an anti-anxiety medication that has been proven to help with dizziness. I still walk daily. Recently on lockdown I realized just how important those walks are and how the dizziness creeps up again if I miss my daily walk.
I did a short mindfulness course. It felt great to get out of the house once a week alone. It allowed me to stop worrying so much about the illness. To pause and take a mindful moment. Creativity has also been a huge solace to me. To busy myself I started working on a project with my father creating art posters which capture those mindful moments we have in our every day. I taught myself to build a simple website as well as an Instagram account. This brought me great joy.
Reaching Out To Others
Clare and I started our own small WhatsApp group. It grew quickly to ten people, all of us Irish, all suffering from VM. Of course I have had a few supportive people in my life but it has also been a very lonely journey. Looking back I think a support group (Migraine Strong) and now also our little WhatsApp group is perhaps one of the things that helped most.
Progress
I was referred by my doctor to a speech therapist who diagnosed mild aphasia. Aphasia usually affects people after a stroke or brain tumour where they all but forget to speak. I was surprised to learn that it can affect people with VM. Her aim was to get me back to confidently giving a presentation again…that was the yardstick we used. I have seen a huge improvement in my speech and with that my confidence. I recently finished a crossword in the newspaper, something the brain fog in the past would never have allowed me to do.
During the pandemic lockdown, my daughter learned to cycle and kept pestering me to go cycling with her. Finally my husband persuaded me to join them both. We all cycled down to the sea and back home, a short 5km distance. When I got off the bike, I broke down crying in my husband’s arms. I cried and cried. It was the joy of the simplest thing….a small thing I thought I would never be able to do again. I was over the moon. I could see on his face that he was also rejoicing.
Acceptance
Some months ago I was referred to a neuro-psychologist and am due a virtual video appointment very soon. When I asked what exactly the session would entail I was told neuro-psychologists assist patients to accept that they have a chronic condition. Perhaps that will be the last piece of the jigsaw-the part I struggle with most. Acceptance that I must live with VM.
VM took away so much but I am grateful for the time I spend now with my children which in my previous hectic working life I never had. I am grateful that I found my creative streak again and that I learned the truism that indeed your health is your wealth. Moving forward, I hope to get back to work. That may entail working from home, perhaps even a career change. All I know is that I am no longer frightened. I have good days and I have bad days but I now manage VM, it does not control or define me.
Heilean Rosenstock-Armie lives in Dublin, Ireland with her family. You can find Heilean’s art project at this website and this Instagram account.
Heilean what a heartening account of your personal story. I cried during it as several things you said resonate with my own VM journey. Thankyou for sharing it so clearly. Heres to better days ahead from one of your Migraine Musketeers
Thanks Ann. We migraine musketeers will get through this. Delighted parts of my story resonated with you.
An honest and heartfelt story of what we migraneurs go through. I resonated with so much of this. I laughed and cried while reading. It gives great hope also, thanks Heilean x
Thanks Natalie. Indeed I tried to be as honest as possible. The first time I told my story honestly knowing that fellow VMs would understand me.
Congratulations on so many things and being brave enough to put your journey into words to help others. I’m not quite there yet, I’m still trying to accept the new me. You give me strength knowing I’m not alone
Thanks Lori. Acceptance is the hardest part I think. I still often have good days where I get so excited I push myself. I do lots of work or start applying for jobs excited that it is all over…..then next day I am very dizzy and realise that I pushed myself to hard. I now try hard to accept myself as I am now.
You said when you lose your balance you veer to the right. I veer to the left. Has anyone given you an explanation why you veer in a particular direction?
I’m so sorry you have this to deal with! It’s tough!!
I hope every day it will go away but it won’t. Some days are pretty good then other days I get an attack. I’m feeling extremely stressed with the virus and now rioting. It’s not helpful for vestibular migraines. However I’m perfectly fine and actually happy in lockdown because I rarely go anywhere anyway. I get motion sick in the car and in a crowd. So recently my way of dealing is to learn to cook something I’ve never made before. Usually a desert that’s rather complicated. Fortunately I haven’t defined any food sensitivities except caffeine and all alcohol but I can actually make chocolate deserts and I’ve been fine. It’s been a lot of fun!
Thanks Judith. My left vestibular system is weak…..which makes me veer to the right (opposite side) My left ear often feels full and I regularly put cotton wool in it to ease the fullness. This is what an ENT explained to me. This lockdown period has been tough. The break with the routine is not good for us so my sleep routine has not been good, my daily walk has often not happened and the house has been noisy with four of us at home all day. All of this has made it a hard period for us with VM. However like you I quite enjoy lockdown as like you I don’t do that much usually anyway either. I also don’t drink alcohol or caffeine and I do miss both. Great that you cook…..you see Alicia found herself through cooking and created The Dizzy Cook. I created my website and others find something to shift the focus from being only sick. Hopefully you feel better soon.
Hi Heilan, the symptoms you describe are pretty much my life right now. I cried through your description of your life. The difference is I have adult children and grandchildren. Thank you for showing me light at the end of the tunnel.
Thanks Liz. I’m so glad that my article resonated with you. It’s so important to realise that our symptoms are similar to what others experience. When I was stuttering, I was so afraid that it was something more serious and so reassured when I heard that it is one of the many strange symptoms of VM. I am also lucky that my children are a little bit older (10 and 16) and can not imagine how difficult this must be with young toddlers or newborns.
My experience with chronic VM almost matches yours. Mine started 10yrs ago with feeling my brain ‘rocking’ non-stop, loss of balance, falling to the right, vertigo, etc. Took a year to get a diagnosis. Neuro said I could get back on my bike – said it was a different part of brain. Didn’t believe him as I needed support to walk. Like you I decided to try & ended up in tears because I thought it would never happen. I’ve spent the last 10yrs trialling all the migraine meds. Effexor helped balance but after a slow tiltration off it triggered Restless legs syndrome and persistent limb movement disorder. Still have migraine- now trialling prescribed cbd/thc Oil. Balance much better, migraine symptoms much reduced. Now able to sleep -RLS & Myoclonic jerks contained. Be very careful if you are on antidepressants- often trigger rls if you come off them.
I am having success with pain reduction using cbd as well. I’m happy to hear you found something to help you.
Be well, Jenn
Thanks Barbara for your comments. Amazing you also got back on a bike. Strange isn’t it that it is easier to cycle sometimes than to walk….who knew. Thanks for the advice about Effexor. I have read about many side effects especially coming off it so I will be very careful. For now it has helped so I guess one step at a time.
Hi, Heilean –
My story is so similar to yours. So many times I’ve had the same picture in my head: going for a bike ride without dizziness or vertigo and breaking down in tears afterward. I feel like I’m still a long way from that, but closer than I was a year ago. Your experience gives me some hope that it’s possible. Thanks for your story, and I wish you many more bike rides!
Thanks Christine. I’m delighted my story resonated with you. It is certainly possible. It took me two years. I hope to keep cycling. My new aim is swimming. I dreamed to swim in the sea again so I did it last week but I did not fare as well as with the cycling. In fact it felt as though I never actually got back to dry land from the sea – for a week I was really dizzy. But instead of fearing it and giving up as is my go to reaction, I will just try it a few more times over the summer, going very slowly and hope that my brain remembers that swimming is ok. We must all stay hopeful. Good Luck Christine in your recovery.
Hi Heilean, your story is the one I’m living right now. 5 months pregnant, I had a traumatic early pregnancy (hyperemesis gravidarium) and tingling on the left side of my head since 4 months … my neurologist did not want to give me an MRI because I am pregnant and he is sure it is a migraine with aura. I suffer from migraines since my childhood. Almost two months, I have the same symptoms as you. I have just been diagnosed that I also suffer from vestibular migraines and that I must wait until my delivery to be able to receive a treatment. I had to see a pyschologist and I do vestibular sessions with a physiotherapist. I suffer a lot and I do not know how I will last another 4 months … Thank you for your sharing your story, I have the impression that I am not alone with this pathology. Good luck in your recovery🍀
Hi Andrea. I am so sorry you are going through this at such an important time in your life, pregnancy. Pregnancy is such a special time and I can’t imagine how hard it is to be dizzy during it. I was always bumping into things when pregnant and that was long before my VM problems. You will see on the treatment pie some of the natural things we take to help such as magnesium and ginger for the nausea. Gin Gin sweets are brilliant if you can get them to chew on. I would advise you to try to have a walk every day. Even when dizzy, get someone to help you walk. It is the best exercise I find for when I am really dizzy, otherwise the body gets used to the dizziness which is PPPD and it is harder to get rid of. A walk each day and a foot bath with magnesium flakes each evening. Other than that just try to take great care of yourself and time out meditating reading relaxing. Pregnancy is such a lovely time. I hope you get to enjoy it despite all this. I wish you all the best with the rest of the pregnancy and during childbirth. This group is very helpful so join the FB page for support.
Just came across this article and bawled my eyes out because you could have been writing about me. And I’m not coping so well in the early days of this diagnosis – not least because my condition is massively aggravated by long-term neck issues that can’t be resolved. The upshot is I have to attempt what you acknowledge is the hardest thing of all: accepting that I have to live with VM. But you give me some hope that is it possible. I have joined the FB page you recommended, to gain and offer support to others. Thank you for writing so honestly and I hope you are doing ok these days.
HI, I cam across your article and it is close to my situation. Initially the doctors said it was Labarinth Itis and then after 6 months one doctor thought it could be menieres, after seeing an ENT who was useless i am no closer to a diagnosis. I am seeing a neurologist in August as think it could be VM but im on medication for Menieres (betahisatime, max dose) and im worried it could be making it worse. Every day is a struggle, i work from home which is good but find computers so draining every day and all i want to do it lie down. I have managed to continue to go to the gym most mornings which helps a lot, my eyes get very sensitive to light and i struggle exercising outside now.
Can i ask are you on medication for VM ? and do you follow a diet plan, im currently following a diet plan for menieres which is similar but has a few differences.
Thanks
Sarah
Hi Sarah, This is Jenn. I have been diagnosed with both MD and VM. Here is my treatment plan in detail. I hope it helps. https://www.migrainestrong.com/the-vestibular-migraine-recovery-plan-that-ended-my-daily-dizziness/ I also wrote an article about the MD VM connection here. I think you might find it interesting. https://www.migrainestrong.com/the-vestibular-migraine-and-menieres-disease-connection-explained/ Know that you can also find me on IG (Migraine Strong) and our Facebook group as well.
Best, Jenn