I have been lurking around this forum for a little while now soaking up all of the useful information posted but thought it was time to join in and share my story. :]
I’m 22, from BC, Canada and this all started for me 3 months ago. I was leaning up against a wall at work (I’m a receptionist at a hair salon) and started to get an awful headache right between my eyes. I have been suffering from headaches (I guess I would now call them migraines) at various points in my life always in the same place but in the past 2 years they have gotten much worse. This wasn’t a regular migraine though, my vision started going very blurry and I felt completely unbalanced. I couldn’t focus my eyes on anything and felt exhausted, like my head was too heavy for my shoulders. I went home from work and laid down in the dark thinking it would subside but it just seemed to get worse. I felt extreme anxiety thinking something bad was happening and would get a feeling of de-realization and disassociation lasting 30 seconds about every 5 minutes. I called the health line and they told me to go to emergency but it was a Friday night so it was packed. I waited 3 hours to even get close to being checked in but finally gave up and went home thinking I would get better in the morning. I had a really hard time sleeping, just kept feeling like the room was moving around. I woke up the next day with the headache gone but still feeling the anxiety and all of the other symptoms so I went back to emergency. Waited 5 hours to be told it’s probably nothing and go see my doctor on Monday. It was Saturday and I started throwing up and freaking out so my Mom drove to see me and gave me some of her Valium. It actually helped! The next day I woke up and I was not as dizzy as before and had no disassociation but still felt really off balance like I was walking on a moving ship. My ears also felt extremely plugged for no reason. I went to the doctor and he gave me Ativan for the anxiety and said the other symptoms were likely BPPV and since it seemed like I was getting better to not try the eply maneuver. I got my balance back after a few days and had no headache or vision symptoms, the anxiety also went away but my ears still felt plugged. The next day they felt like they had water in them and I started feeling really nauseated and had gastrointestinal problems. I went back to the doctor and he said I probably had a stomach bug and to take Imodium. That night I had the worst ear pain imaginable in both ears! I was clenching my fists from the pain and no pain reliever would touch it. It felt like my head was in a vice and my ears were going to explode! Then the next day all of my symptoms subsided and I thought I was in the clear. My period followed right after.
Round two happened almost exactly a month after this but followed a different course. I was listening to loud music in my headphones (SO STUPID in hindsight) and started experiencing really bad ear pain, more so in the right ear. I stopped the music and got up and almost instantly had the dizzy off balance feeling and weird disassociation from myself. This lasted maybe 5 minutes and then went away but then my ears became plugged again. I was so sensitive to sound and light, it felt like my boyfriend was screaming at me. I tried so many things to clear my eustachian tubes and nothing worked. The next few days consisted of ear pressure, turning into a feeling of water in the ears, turning into severe ear pain and back again. Whenever I took my Mom’s Valium it seemed to help a bit so I took that off and on. I saw my doctor again and pleaded with him that this was not BPPV and I couldn’t deal with this! I told him I did not think I had Meniers because I had no tinnitus or hearing loss and when he asked me if I got headaches we both thought it might be migraine associated vertigo. He put through a referral to see a neurologist and said I would just have to ride it out, but to come back if I was dizzy. He said he couldn’t send me to an ENT and neurologist at the same time which I thought was really shitty. We did a CT scan which came back fine, tested my hormones which were all fine, did an ECG which was fine, and he has looked in my ears over and over which both look fine. After the ear pain subsided I got the gastrointestinal problems again and could not eat for a few days. Then I was okay again until I took a Midol and had a 5 second episode of dizziness and then my ears plugged for two hours. Then my period followed right after.
In all of these instances I had had caffeine so I decided to give that up. I also realized there was caffeine in Midol so I identified that as a trigger. I read the migraine diet (still need to order “Heal your Headache” - sounds like the bible of MAV) and cut out all necessary foods. Ketchup, MSG, coffee, and dairy are the triggers I have identified so far. If I have any of these my ears plug up for a bit right away. Cut out Tylenol and Ibuprofen because they weren’t helping the ear pain anyway and I did not want to get re-bound headaches. This month my symptoms changed yet again which I think is because of the dietary changes. I never got dizzy or anxious, my ears just started hurting one day, that turned into ear pressure which turned into extreme pain and then went back and forth between pressure and pain for only 3 days this time. I am still sensitive to sound and light! I am still waiting to see a neurologist as well and have been given Relpax to take and see if it works next month on the ear pain. One night the ear pain, mostly in my right ear lasted 10 hours and again I almost went to the hospital. I forgot I had Ativan and decided to give it a try because I was freaking out and almost immediately my ear pain turned into a headache. Then it dulled it to the point of being bearable or just put me to sleep. Ginger, lemon, honey tea slightly helps my ear pain and so does an icepack on the back of the neck. Right after this episode I also got my period, but gladly escaped the gastrointestinal problems. I listened to music really quietly and not in headphones and my ears plugged up right away for a few hours as well.
So, sorry for the novel of a post I just really wanted to document everything that has happened to see if anyone has similar symptoms. I don’t read much about others having ear pain, having a water in the ears feeling or stomach problems but would be interested if there are people out there with the same. Does this sound like MAV to you? I called the neurologist and they said it would be 13 to 14 months to get in (!!! I cried!) but I am close with a client at my work who is high up in the medical field so she has moved me to another list to get in as soon as possible. I cried again when she offered to help me, not sure what I would be doing if she hadn’t. Very interested to see what the neurologist has to say and to be honest excited to try some medication that might actually stop this from happening to me! I have no problem following the lifestyle modifications but I feel like I have to tell everyone to stop shouting at me and I am anxious all the time that this will happen again. The pain is just unbearable when it happens. I have so much respect for many of you who have been dealing with this, and worse symptoms for any length of time. It is a true test of character and strength of the spirit to get through all of this.
Thank you for reading, let me know if you have any questions or comments! I look forward to meeting others who are going through the same sort of thing. :]