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Just diagnosed, scared, and don't know what to do. PLEASE HELP ME!

Let me start with a little background… Hi, i’m Ryan and i’m 25 y/o. I have not had many medical issues during my short life except some broken bones and i’m overweight (398lbs). About three weeks ago around midnight I woke up and told my wife I didn’t feel well (I was dizzy and nauseous). I describe the dizzy feeling like being inside on my clothes dryer or on a spinning roller coaster. within minutes I was in the bathroom giving my toilet hell (my wife says it was like the exorcist). We decided to go to the hospital, They tested blood, urine and did a head CT and sent me home with no answer, valium, meclizine, and phenergan. I followed up with a ENT the next day, The PA said that she was confident that this was a virus that needed to work itself out of my body. A week passes and everyday i was dizzy and nauseous still taking the meds that the ER gave me, I woke up one morning to get my son up and could not stand up on my own, I felt like I had no control of my body and had to slid myself across the walls of my house to my sons room do he could call my wife. My in laws took me back to the ENT and the PA said the same thing and sent me home in tears (at this point i’m freaking out). Two weeks pass with just mild dizziness and nauseous until Wednesday of this week, I felt okay all day and was ready to leave work around 8:00pm when i pulled out of the parking i made it to the red light. The light turned green and I lost control of my body again, it was a miracle that i was able to get to the curb with out accident. (fast forward -----> Vomit on street —> police came —> ambulance —> they had to be carry me out of car because I cant walk —> back in ER —> sent home after getting a sedative because i couldn’t stop heaving. The next day I had some testing done at the audiologist (ECOG and VNG) all came back normal. The audiologist says i was misdiagnosed and I have vestibular migraines. I’m starting a new job in a week where I will be 100% travel on a plane each week and worried ill have an episode while traveling and not with family. what should i do???

TIA

  • Ryan
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Oh Ryan! My heart goes out to you. The scenes you’ve described are so familiar, so daunting, so frightening and so humbling. I was you in January of 2018 through December of 2018. It undoubtedly was the longest, hardest, scariest, darkest year of my life.
You are in the right place for support!
Now, fast forward to today, I am 80%-90% better since December.
One thing you should know and I hate to be the bearer of this news, MAV is a slow healing diagnosis. It couldn’t have hit at a worse time for you with the new job and it’s demands of traveling a whole lot. I personally can attest that I prayed something would come up and derail my business trip across the country one month after my diagnosis. No such luck. I did it! It can in fact be done… but I had two traveling companions who are great friends and supported me (sometimes literally) through the trip. I’ve traveled to The east coast and west coast since, but again have had companions. Traveling is a terrifying feat for any MAVer. Many if not most have not traveled at all since their diagnosis. I am one of the fortunate ones. I don’t want or mean to say that you can’t do it… I just wonder if you can do a “test run” with a companion first? Even go into the main terminal where the ticketing is done and just do a few laps by yourself, see if the lights, angles, sounds, crowds, patterned flooring, reflections etc give you trouble. These are all things that are triggers for me. I wish you so well and honestly… you have an incredible amount of support here with people who’ve been in your shoes. Best wishes Ryan!

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Ryan, migraine or MAV is a diagnosis of exclusion- other conditions must be ruled out first. You mentioned your weight- pseudotumor cerebri can present this way, and mimic migraine very closely. It’s also known as intracranial hypertension. You might want to see an ophthalmologist and neurologist and ask about this to rule it out. It is directly linked to obesity, and I’ve read of people being misdiagnosed at first.
I’m sorry you are suffering, and I hope you find relief soon!

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Thank you very much for the kind wishes. I’m just so taken back that this just started out of no where one day and now has me in a consistent anxious state of mind.

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Are there way to prevent an “episode”?

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I think that working out triggers - dietary and otherwise- is a good start towards prevention. Some people have great results from the various drugs available. But the remedies are not one size fits all, so it will take some trial and error in the first place.

Keep coming back here. It does help to bounce ideas back and forth with people who understand.

Take care.

PS I’ve never prevented an episode that’s already started. I find that drinking water and sitting still helps once it’s in progress. Then it’s about waiting.

They put me on Topamax to start. I don’t know what triggers are and how to know that mine are. Any recommendations?

Ryan, you’ll need to be observant over time to work out whether any foods or other things are part of the cause. Keeping a diary can help There is a recent thread about foods which might be a good place to start as far as getting an idea about what we mean by food triggers: CLICK HERE https://www.mvertigo.org/t/what-food-triggers-do-you-have/16693
I’ve never definitively worked out any food triggers for me, but it is worth trying. There is a lot about eating if you do a site search.

I am sensitive to various other things such as over-fatigue, dehydration, high air pressure (hectopascals) and motion - exposure to these can make things worse for me. It may not be the case for you, but it is useful to be aware of what’s happening around the time you have an attack. Looking at past postings at this site will give you some ideas of other possibilities.

I know that all of this must seem very frustrating. It is worth putting in the time.

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Get on a preventative like venlafaxine or Amitriptyline.

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If you tolerate topo it could help in weight loss as well as migraines.

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Hi Ryan, sorry to hear about your issues, it definitely causes a lot of anxiety! Topomax may be a great medication for you. Triggers can be really tough to find, I’ve found it best to go on a migraine specific diet, which avoids many of the common food triggers. You can find “heal your headache” book in near the top of the recommended products page list: https://www.mvertigo.org/t/member-recommended-products/14989

Its a great place to start, but you gotta stick with it for a couple months at least.

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Also read the below it is a good summary of how lifestyle changes like regular sleep schedule, eating on time and exercising can help VM as well in addition to meds.

https://www.mvertigo.org/t/vestibular-migraine-survival-guide-2014/2244

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Thank you all so much, you are helping me more than you know i promise. please keep all the good advice rolling in.

  • Ryan
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Thought about you today Ryan and was wondering how you feel when your not having a vertigo attack? Light sensitivity? Rocking motion? Brain fog? Feel like your leaning? is your vertigo positional at all? There’s a long list of other things that go along with MAV besides vertigo. For me, there’s none as evil as vertigo however!

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Thank you for your thoughts, I have been in a constant dizzy state for a month. I can’t say there has been one day where I haven’t it needed to just touch the wall as I was walking down the hall. This evening around 6 PM I had an episode and this is the first time I have an able to open my eyes and it’s 9:41 PM now. I have a neurologist appointment tomorrow I would love some questions to ask, if you have any?

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So sorry… those days feel so helpless. We all know them so well. My questions when first diagnosed revolved around medications, how they work… don’t be suprised if they don’t know the answer. MAV I still such a mystery to the medical field, even neurologists. And of course the biggest question for me was… when will I get better! The response will likely be vague to both questions. Again, so much mystery they don’t have answers for. So, some practical questions may be: focus on triggers, diet and lifestyle. These are things we actually can control to a degree. I’ve attached here the diet sheet my specialist gave me. I think this is a pretty exhaustive list compared to many Drs. You may ask “why did this happen to me”, and again… don’t be suprised if they cannot tell you that either. Most of the specifics to the illness I have learned came from here on this forum or Dr Hains website How migraine causes dizziness
Please do let us know how the appointment goes! I hope you have a great Neuro that can take the time to listen, offer good advice and treatment!

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Is this your first visit with the Neurologist?

A few thoughts:

  1. Neurologists treat a wide variety of patients, sometimes they are not well versed in migraine treatments. And the ones that are well-versed see many more traditional migraine patients than vestibular migraine patients. So, I guess my point is they may not know what to do with you. My first Neurologist didn’t. But if that happens, I would seek another opinion from a Neurologist that treats a lot of migraine patients.
  2. If you have headaches or head pressure (which is what my headaches feel like), try to rate them in severity from 1-10 and get an overall estimate for how often they occurred over the past month. And whether things like aspirin or ibuprofen helps.
    Neurologists generally like to start with some data on where you are currently at and how disabling the headaches are. You may say that you don’t have headaches as I did, but in reality I did have them its just that they weren’t particularly painful, I would feel them as head pressure, but they were still very disabling as I would have to lie down and had trouble speaking properly. I was pretty much like a vegetable for a couple hours.
  3. Anxiety - many times the Neurologists fail to see how much anxiety plays a part in the treatment of vestibular migraine. Being dizzy without a known cause for months on end without a single moment to relax and feel normal will give anyone an anxiety disorder. I personally found it helpful to find a psychiatrist to co-manage my medications or add to them in order to help treat anxiety at the same time. You might be dealing with something called depersonalization or derealization, we’ve all had it, don’t worry with the proper treatment you will feel normal again.

Anyhow, you are lucky to know about vestibular migraine so soon into your dizziness and are seeking consult from an actual Neurologist. It will help get you recovered quicker. I went a whole year without understanding what was happening to me before I got treatment. Some on here have gone a decade before learning about vestibular migraine.

Hope this helps Ryan, good luck tomorrow.

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Same here.

Definitely !

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Hey man. And welcome. Sorry you have to be amongst us, but know you are amongst people who identify with everything your going through, especially early on. I’m about your age, so I know having this this young is tough, but in time you will improve. You’ll need to make life style adjustments when you find out what works for you (I had to go find a job that isnt comouter involved at all) and will have set backs. But you will improve and get enjoyment out of life still. Unfortunate thing is theres no one for sure treatment for MAV, so you will have to take it slow and expect it to be a long journey. Measure progress in months not days, that’s how you will see improvement. As I’ve told others we are your biggest cheerleaders here, so take it a day at a time

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This will be my second neurologist, the first sad I had HSV in my ear. I’m hoping this one will be able to shed some light on this situation. I’ll be traveling for work by plane weekly starting in a few weeks.