My Journey began October 2020. I was sick with strep throat and congestion and I started to feel dizziness what felt like in the back of my head until one day my ear felt like it need to be popped and once I did that I immediately got my first vertigo episode. I was so freaked out I immediately saw a doctor ( I work in a medical building) the doctor gave me some prednisone, antibiotics and Meclizine. My symptoms went a away for maybe a month and the vertigo came back with vengeance. I had the full effect of spinning with nausea and vomiting. I went to the ER twice with not much help then I was told I could have ménière’s disease so I went and did the hearing test and a MRI of my right ear and the ENT confirmed that it was Ménière eventually the vertigo cleared up and I went months with no problems until this past June. I had the vertigo even worse this time for about a week I couldn’t do anything for myself. Went back to a different ENT doctor who said that he think it’s the Vestibular Migraine causing the vertigo but he did do a steroid injection which helped calm down the vertigo. So now I’m being giving different types of medication from a neurologist I tried the Topamax I last two days the side effects were terrible and then I tried the Amitriptyline lasted a week it made me super depressed and now I’m on the Emgality injection… I keep hearing about learn your triggers but I have no clue where this is coming from! I just want my life back!
Hi Rachel, so sorry to hear that you’re going through it. I totally empathize with the fear and desperation to get your life back. I’ve been dealing with VM 24/7 for 3 months so far so I can only offer a limited perspective. But, I have found that keeping a daily journal of symptoms can really help find any possible patterns. For instance, it helped me realize that my worst symptoms/days seem to be in line with menstrual cycle. Have you kept any kind of diary? Maybe it would be useful to not only record symptoms but also what you eat, how much you drink, and what your activity was that day. I have found that I am extremely hydration sensitive and that if I don’t drink water/herbal tea literally all day long that my symptoms will be much worse. Maybe also record how many hours you sleep each night and the quality of your sleep. I know if I don’t sleep well everything is so much worse. I haven’t personally done any sort of elimination diet yet but I know some people have found some success with identifying dietary triggers by eliminating certain foods (you can search migraine diet on here) for 4 to 6 weeks and slowly adding them back in one at a time to see if any of them cause an attack/increased symptoms. I hope some of this might help.
You might want to fill in the dosages of the Topomax and Amitriptyline and how you were titrated onto the drugs. That knowledge might be helpful to those in the forum with more experience.
We also have a journal section where you can fill in your history and keep somewhat of a daily journal if you don’t mind us all seeing it. Click on the link below and fill in the blanks.
Sorry to hear that but, be strong my lady. Find the best neurologist, someone who can you trust so you need not to have different medications. Just continue to monitor yourselves every medication you take for you to have an idea of what works best for you.
Hi Rachel and welcome. Sorry you have had to join us but at least here you will find the support you request and lots of practical help. Others have already made good suggestions. If you are tech savvy there are apps to cover most things.
Over recent years I’ve had this conversation with so many who join up and say
In summary the best way of doing that is to really familiarised yourself with the condition by reading as much as you can. Start with this site’s Wikis and of course various posts and PDs which seem familiar to your own experience. Then you need to go forwards being your own advocate. Make sure you have the correct diagnosis. Is it VM or Menieres? Do you need another opinion. The two conditions respond to different treatments so best to more sure. I say more sure because there is no definite test for VM. It’s a diagnosis of exclusion. Once you are more sure I you need the appropriate treatment plan. If it is VM there is a package including lifestyle changes, diet and preventatives which despite their name don’t necessarily cause total prevention. When it comes to medication there are two golden rules. VM sufferers tend to be highly med sensitive but not expect medics to either know or appreciate this fact so we need to start at tiny doses and increase slowly. Low and slow we say. The second rule is unfortunately no one drug suits all or even a majority so it all a case of individual trial and error. Topamax and Amitriptyline are both commonly used with great success so in due course don’t be surprised to find you may need to revisit them on different terms and even experience success. One more thing I always think it’s helpful to know and we are rarely told the medication tends to take several months to work. Something which in this instant age often comes hard.
This site boasts an excellent Search facility. Any keyword will bring forward lots of results. You may also find this link useful as it includes some Menieres info too. Good luck on your journey,
Helen’s advice is very good. She has a lot of experience with VM, so she knows of what she speaks.
My first round with Topamax lasted three weeks. Not nearly long enough to see if it would work. But, the neurologist, that I was seeing then, tried to get me to 200mg by starting at 100mg and taking two weeks to get to the 200mg.
My new neurologist is trying it again, but lower dosage this time. I started at 25mg and I’m now up to 50mg. She instructed me that if it suddenly starts working, stop increasing the doses, but don’t go past 100mg. I increase it 25mg each week.
I only last two days on the Topamax, I gave me terrible panic attacks and I couldn’t eat and I was only taking 10mg. I’m willing to try the Amitripyline again but right now I’m Emgality, I just took the first loading dose and was told it will take 4 months to see any effect.
The only thing I’ve notice about triggers is when I’m stressed and just today I think looking at my two work computer screen gave me vertigo.
Stress will definitely make it worse, which is such a rough cycle in our situations. Have you tried adding a blue light filter to your screens? I have my laptop and phone on blue light filter now and it does seem to help me not be so affected by the screens.
I have found that I have less trouble with my screens if I turn the intensity way down. That of course means I also have to turn down the ambient lighting as well. But, that’s okay.
Office environment powerful trigger. Screens even more so. Multiple screens = triple whammy. Unfortunately these sensitive brains lag way behind technological advances.
I’m new to this site too! Seems like you’ve already seen good Dr.’s and are taking medication. I received my diagnosis of VM today from ENT snd I’m being referred to Neurologist. You’re already on your way snd I wish you good health!
Hi and welcome. Perhaps you’d like to tell your own story in a ‘new here, let me introduce myself’ thread all your own. We’d be interested to hear.
I only lasted 2 days on this too. Years ago when it was ‘only’ pain migraines I wanted to control. Total derealisation, I couldn’t speak the words in my mind nor think of words in my mind. This was a random GP mind you who probably gave me a huge starting dose… who knows.
How’s the Emgality going? I’m interested taking this path in a couple of years
Good Luck! It’s been a journey so far for me and I’m still figuring it out. What were your symptoms that lead to your diagnosis, if you don’t mind me asking?
I started Topamax on a low dose and I had all kind of side effects. My neuro doctor brushed them off as something else but I couldn’t go on so she humored me and let me switch.
I started the Emgality Saturday ( 08/07). I honestly haven’t noticed a difference. I still have a normal headaches and had a small vertigo attack Monday. I mentioned it to the doctor and she told me to give it time at least 3-4 months before I see results. I have another appointment with a new neuro doctor tomorrow, just to get another opinion.
I use the blue eye glasses while I work. But the pressure from them behind my ears makes my head hurt so I have to take breaks.
Same here, I am using IonSpec glasses but I take time to rest in between.
What’s your job? Preferably, it is better not to spend too much time in your monitor as it can trigger vertigo. The lighting may be too bright or too dim or a color that triggers a reaction.