In the midst of being diagnosed

New here, let me introduce myself 🤝
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Hi everyone,

This seems like a very supportive group which gave me the confidence to post. Im not really sure what I’m looking for, maybe hope? It’s scary that there seems to be no “cure” and that this is life-long. And please correct me if I’m wrong, as I’m still learning.
I’m in the midst of being diagnosed with what after a lot of reading and searching on my own, sounds like VM. I’ve been seen by my GP, ENT, opthamology, and most recently, a neurologist. I’ve also had many tests. My CT scan and MRI came both came back normal. I’ve had blood work, EKGs, and an echocardiogram. I’ve been to vestibular therapy once but they dismissed me because they said it was unrelated to my vestibular system (it clearly IS related). I’ve also had the full ENT work up with the rotational chair (hope I never have to do that again!)

I’ve been dealing with this since August. It all started when I got out of bed really fast in the middle of the night to tend to my son and had a syncopal episode. It was unwitnessed so it’s unclear if I hit my head or how I landed. The ER doctor diagnosed it as a vasovagal reaction to getting up too fast. Ever since then, I have felt this way. I don’t have dizziness in the sense of the room spinning but feel light headed. At first it was really bad and if I turned my head, I felt off balance or like I was going to fall. I was nauseous, had ear fullness and head pressure, and ringing in my ears. If I was sitting, I felt like I was falling. My head felt heavy. The first week was the worst and then it very slowly and gradually got better to the point where I was living my life normally (while still seeing all these specialists to try to figure out what happened), but I’ve not had a complete resolution of symptoms in the last 5 months. I don’t have the light headedness all the time. I’ve noted that I have it when I get up in the morning, sometimes in the shower (I’m guessing related to the heat) and it is always triggered when I’m around a lot of stimuli like in a roomful of people who are all talking. I also have worsening of symptoms around my cycle. One other symptom I’ve had that has never gone away is eye floaters. My neurologist was kind of stumped that they never go away.
Sometimes I have a headache, which has been mild, but most times I don’t have any head pain at all.

I got really bad again in late December. I reached out to my neurologist who had diagnosed me with vestibular “or” ocular migraines when I saw him. He didn’t put me on anything at the time because my symptoms had improved so much. When I reached out to him, he suggested I try a course of steroids and Keppra (for 5 days) to see if it would “break the cycle”. I felt a little bit better while I was on the medications. I honestly think it was just the steroid that was making me feel good but again, did not have a complete resolution of symptoms. After being off of them for a day and a half, my symptoms are showing again.

I have an upcoming appointment with a concussion specialist to rule out a concussion when I passed out. He felt the fact that my lightheadedness is triggered by a lot of stimuli is a concussion sign but otherwise all the symptoms sound like VM. If you’ve read this far, thank you. This leads me to a few questions:

-After reading through this forum, I’ve seen a lot of posts that mention seizures with VM. Do they often occur together or does VM put you at a greater risk for seizures?

-How do you drive with this? I’m talking for important appointments to get a diagnosis. My current symptoms would not put me at risk to drive, but my newest symptom is getting extremely motion sick AS the driver. I’ve never experienced this as I usually only get motion sick in the back seat.

-How do you go about finding a doctor in your area who can effectively treat you? It’s obvious my neurologist does not know much about VM and the treatment.

-Lastly, hope? Positives? I’m 33 years old and I have a 4 and a 2 year old and my husband and I felt that our family wasn’t complete but now I’m wondering if this diagnosis makes it possible to have more children. Referring to the fact that I’m not sure if medications used to treat VM are safe during pregnancy.

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Hi and welcome.

Briefly try to answer your questions but note you are reading around the site which will help anyway.

Very surprised you have found so many references linking seizures to MAV. Must make it clear I have no medical training at all but done vast research over years and it’s not a symptom I would consider typical of MAV. Maybe it coexists for some. It’s certainly not diagnostic of MAV.

When it comes to driving. I don’t. I stopped because I considered it unsafe to do so. Legislation varies and bearing in mind this site goes worldwide you need to check out your local legislation and most importantly with your insurers because generally dizziness and vertigo are not conditions covered and you could well be an uninsured driver by default.

Medical knowledge varies considerably. Find a good neuro-otologist if you can, a big balance centre or at least a migraine specialist neurologist and be prepared to read up a lot and go forward as your own advocate and, if you don’t already possess it, take a short DIY course in the art of Persistence. You can get through this but you need to push to obtain the necessary treatment.

MAV doesn’t stop people having babies. Can obviously make caring for them more work. Because of you being of child bearing age certain drugs cannot be taken. However there are over 100 possibles, listed on here somewhere. Take a look. There are a few that are possible for women hoping to conceive but many decide it safer to manage without for the duration. Be assured doctors often don’t know much about MAV but they certainly are pretty clued up when it comes to combining drugs and possible pregnancy.

Positives? Hope? Well it ain’t gonna kill you. There are things you can do to improve QoL. There are treatments, medicines and lifestyle changes, which can get it under good control. New treatments are coming on the line currently including various injectables and no doubt more subtle treatments may well be developed in future. Acceptance however does play a huge role. Migraine is indeed a lifelong condition that doesn’t go away. People do experience vast periods of remission. Some women stop having migraine post menopause completely.

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Thank you, your responses are very helpful.

That’s good to know about the driving. I have never driven when my symptoms were bad, but they let up so much a few months ago that I was able to. But I guess with MAV, they can get really bad out of no where so it’s best not to.

I think my biggest struggle will be finding a doctor to treat me. I did see a neurotologist but his focus was ENT and he passed me off. It seems like such a long road to finding something that works. The positive stories are definitely helpful.

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Without giving away your exact location for security state roughly where you are in the world and somebody near may well be able to help you locate a specialist. It often happens that way.

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I’m in the US, in Pittsburgh, Pennsylvania.
It would be wonderful to get a recommendation.

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I could say I will wave my magic wand but I think best practice is to await the rest of America awaking. That usually works.

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Thank you so much for your help!

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I had my appointment today! I made it. It was rough getting there, but I made it!

First I will say, I really liked the medical provider which I think is huge. I saw the physician’s assistant of the neurologist that was recommended to me. My appointment with the neurologist is in a few weeks but they offered to have me seen sooner by her PA to get a start on treatment. She said they work very closely together. I still have my appointment with the neurologist, but she’s just going to check to see how I’m getting along on the medication that was prescribed and answer any other questions.
But, she was awesome and so compassionate. That alone, took a huge weight off my shoulders. Then she told me that they treat a lot of patients with vestibular migraines, and I felt myself relax even more.

Full disclosure: I have medication anxiety (surprise!) as I’ve found a lot of people with vestibular migraines do. I knew after doing my own reading and before going to the appointment that there was one medication I would not be willing to try: Effexor.
I’ve read the horror stories of coming off of it and it genuinely terrifies me. My thought process was, that was reasonable of me. One med out of all the meds used to treat vestibular migraine? I felt like that was still being pretty open to treatments.
Unfortunately, it was one of two medications she said they use first and work best to treat vestibular migraines. The other one is propanolol, but with my low blood pressure (90s/60s) and low heart rate, she said “no way”. I told her that I wouldn’t totally shut it out, but I would rather keep Effexor as a last resort if other meds cannot get me a significant amount of my life back. She agreed and said that if I went on it feeling that strongly about it, that it probably wouldn’t work for me anyways. She knew I tried amtriptyline and had to stop it for tachycardia. She said we could try nortriptyline but it’s likely to have the same side effect on me so we’d just be wasting time.

Her next option for me was Topiramate 50 mg once a day in the evening, and that’s what we settled on. She said to start with 25 mg for the first week and take my first one when my husband is going to be home the next day, just in case. She was aware of my medication anxiety

Honestly, I could find a million reasons and side effects not to try any medication, but my quality of life has become so greatly affected by this, that I need to take a leap of faith. She said if that doesn’t work, there are other options besides Effexor.

She was so knowledgeable and advised not to start any vestibular therapy until we get me feeling better. She answered all my questions thoroughly and that alone made me feel better and eased my anxiety.

She also prescribed me Compazine since the Zofran is only helping very slightly. She said if it doesn’t work we can go back to Zofran and try increasing the dose.

*I forgot to mention that at this point she feels the nausea is vestibular related. She said my system is just so hyper right now and it cannot calm down.

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(@alm33 I’ve moved your post here as personal progress updates should generally be made on #im-new-let-me-introduce-myself or #personal-diaries (consider starting one) - good luck with the new regime!! :heart: )

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Enough has happened to me in the past month that I thought I’d post an update to keep track of my own personal story.

I reached out to neurology again because I’ve had no let up of my nausea. I wasn’t expecting to yet from the Topamax, but I wanted to see if anything could be switched around with the nausea medications. Neurology advised me to see my PCP and/or GI because they said being that I wasn’t having much dizziness, the nausea/level of nausea I was having wasn’t fitting. They said they just wanted to make sure they weren’t missing something else, and they felt whatever testing my PCP/GI wanted to order was warranted.

I could see their point as my all day nausea had subsided. I actually can wake up, drink water without a problem, feel hungry, have an appetite and cravings. But as soon as I eat, and I am still keeping it bland (toast, plain, rice, baked potatoes) and tiny portions at this point, I will get SO nauseated. Most times the sick feeling will pass within about a half hour, but occasionally it will get really intense and last the rest of the day. Zofran and Compazine barely help. It’s been over a month of me consuming less than 500 calories a day because I just feel so sick everytime I eat, yet I’m hungry. They did blood work and an upper scope with biopsies last week, all which was normal. They feel that gastroparesis is unlikely based off all my symptoms. They ordered a CT of my abdomen, which I’m scheduled for on Saturday. I’ve already had my gallbladder removed 7 years ago.

Around the time all of my nausea started, I got blood work back I had done by a functional medicine doctor. It showed that I have very low Vitamin D, which I’m told most of the world does. It also showed that my thyroid antibodies are very high and my TSH is very high-normal. I met with a endocrinologist who diagnosed me with hypothyroid, and she told me I had the option of starting on a low dose thyroid medication then, and rechecking my blood work in a few weeks or waiting on the medication and just rechecking my thyroid in a few weeks. I had just started on Topamax and was hesitant to start two new meds at once so I opted to wait on the thyroid medication. The endocrinologist told me that hypothyroid would not be the culprit for my nausea, but interestingly enough, my GI doctor actually questioned whether I had my thyroid checked during her work up so now I’m wondering. My repeat thyroid levels will be drawn this Saturday as well so I’m curious to see what my levels are. I’ve since read that hypothyroid can cause a host of GI problems.

I have been on my target dose of Topamax (50 mg) for two weeks now, started it initially one month ago. Neurology has asked me if I thought it could be the cause of my nausea, but I had all the same nausea symptoms prior to starting it.

At this point, when I’m feeling better someday, I fear I’ll have major phobias surrounding getting in cars (motion sickness) and food. I’m definitely looking forward to some better days!