Feeling lost & thinking i might have more than BPPV

Hello,

I’ve been peeking around this forum for the past 3 months trying to find out what is happening with my head, but now going on my 3rd month of symptoms, I am starting to feel at lost as to what is actually going on.

To give a little background information:

I’m a 30 year old female & I had my first ever vertigo attack on 11/21/11 during the middle of the night when after going to the restroom, came back to bed, laid on my right side, but when turned to my back, suddenly saw the room literally spinning around. It would happen when I would look to my left or right, but noticed that the spinning wouldn’t happen when I would look straight up or get up straight. It was one of the most scariest experiences I’ve ever had!

I went straight to my primary care physician the next day and he immediately diagnosed it as BPPV in my left ear. He asked me to try the Modified Epley Maneuver at home and if there were no improvements to come back in a week. I did the Modified Epley Maneuver at home (after Googling how to do it as the doctor didn’t show me how) and the actual spinning subsided in 3 days. But after the vertigo went away, I was left with immense brain fog (that feeling you get when right when you wake up in the morning x 100 worse), radiating head pressure (as if someone is pressing down on the front side of my head) and some headache associated with it.

I went back to the doctor’s office and shared with him my symptoms which at that time he referred me to see an ENT (ear/nose throat) doctor. He also sent me to get an MRI of my left ear and head. The ENT also diagnosed me with BPPV, but also has asked me to go get an Audiogram/Impedance/and ENG, which came back abnormal. The ENT also switched me from doing the Modified Epley to Brandt-Daroff.

He then sent me to start seeing a physical therapist that specializes in balance disorders, who I have been seeing since the beginning of December 2011. I go and see the PT every week & assigned with homework during the week which includes eye/coordination exercises. The brain fog seemed to be getting better every week and after about 2 months, I felt almost back to normal with only about 15% head fog & no headaches/head pressure.

Then one week I came down with a cold and everything went backwards. I felt like I was back at square one with intense head fog, headaches/head pressure. This was probably around the middle of January this year. The PT asked for me to go back to the ENT to see if my symptoms were possibly linked to sinuses although I’ve never had any sinus issues in the past. After a camera test to check my sinuses, the ENT ruled out any sinus issues, but after hearing that my head fog was getting worse said that there might be a possibility that it might be migrane related & has asked me to go see a Neurologist. I am currently waiting to see the one he referred me to (my general doctor also recommended the same doctor), but his next open appointment is in June!!

Meanwhile, my PT also suggested that I go seek out an Acupuncturist to see if that might help my symptoms & also to go back to my Chiropractor to see if getting adjusted might also help my symptoms. (I have been in 3 big car accidents which has left me with some alignment issues in my neck & lower back. I was told that I need to continue going back to get adjusted as it will never be the same again.)

Along with this, I have had stomach issues since I was young and sensitive with foods. Many foods upset my stomach especially raw fish, alcohol, caffeine, friend foods, medications. I have cut out all of these foods from my diet, which has made things better, but still not quite there yet as if I eat something wrong (which I don’t even know what will trigger an upset stomach as it varies depending on the day & my overall health that day) it will make me feel weak for days. I have no had any food allergy testings done, but found out about 4 months ago that I am sensitive to gluten, which I have also cut out of my diet.

As if this were not enough, I have been battling with bladder issues for about an year now & was scheduled to go get checked right before the vertigo attack. Now it is on hold until I figure out what is happening with my head, but you can imagine that the stress with my bladder does not help matters with my head!

Before the vertigo, I never had issues with headaches, just an occasional one here and there when I might be under a lot of stress, but have had bouts of dizziness/lightheadedness quite often before the incident. Now after the BPPV/head fog, it seems that even a little bit of stress triggers intense head pressure which leads to head aches. The head aches tend to migrate to different places, but the head pressure usually is on the frontal part of my head. Also the head fog/head pressure seems to get worse when I am on my monthly cycle. Also to take in to consideration is that I have always been susceptible to motion sickness & very sensitive to light & sounds.

I have been able to drive for 3 months now because of the head pressure/head ache/head fog when I attempt to drive & have had to rely on family/friends to take me to my doctors appointments.

At this point, I’m not sure what to think or do, but just want to find out a way to get rid of this head fog. My PT & ENT seemed pretty confident that it’s not migrane related head fog & that if I keep doing my exercises & give it time, that it will go away, but after hitting the 3 month mark a few days ago, I’m starting to get a bit weary.

Can anyone help shed some light & hope into my situation? I am feeling so alone right now as no one around me has ever gone through anything like this & I feel so bad for my husband who is having to take care of everything while I go through this.

Thank you for reading. I really appreciate your time.

Hi Jackie,

Welcome to mvertigo … but sorry you’ve been through a rough time.

Reading your story, I am thinking the following:

Scenario #1: You had a BPPV attack in the night and the BPPV was the event which has set off your migraine brain for the first time. We often call it the “big bang” event here that catapults a sleeping migraine brain into an awakened one. Catching a cold and seeing your symptoms get much worse is very migraine-like and is common among sufferers. Most people who have a BPPV attack feel crappy for a while afterwards and then they get better again never to think about what occurred ever again. A neurologist in Sydney (Halmagyi) told me it is the person with BPPV sitting in front of him that almost always has migraine going on (it was the reason I had to see him the second time). The non-migraineurs just get over it and move on without the need to see a specialist. But for the migraineur it turns into a long and boring hassle of recurrent symptoms and repeated problems until the migraine is controlled.

Scenario #2: You’re migraine brain has awakened all by itself for no apparent reason apart from you getting older and kicked off the party with a BPPV attack. Migraineurs are 3X more likely to have an idiopathic BPPV attack than any other group. I’ve had two attacks myself because of this migraine garbage.

Whatever the scenario, you did the right thing by using the MEP to move the ear rocks back into place. Now you have to get the migraine controlled, which sounds like the probable culprit to me. Does anyone else in your family have migraine? Have you experienced and light and/or sound sensitivity through this ordeal?

I do know a guy who was on this forum a long while ago named Subs. He had BPPV and was dizzy and unwell for over a year. In the end he wasn’t compensating because he had an eye glasses problem that needed fixing. Subs never showed any migraine-like symptoms though – no headaches, no light or sound sensitivity and his trajectory out of this was relatively linear. Yours does not seem to match this scenario. Much more migrainous to me.

Cheers … Scott 8)

p.s. have a read of this paper:

http://www.mvertigo.org/articles/BPPV_associated_MAV.pdf

I’m sorry to read you are having such a hard time at the moment, but please know you are not alone and we all sympathise with how you feel!

Personally all my problems kicked off with BPPV. I started with waking up in the night as I turned over in bed, and the room would spin. To start with I had occasional attacks that resolved within a few days, but then in Dec 2009 I had problems that lasted for months and months (loads of symptoms I won’t bore you with the full list, but the main two were that I felt like I was rocking, and also I was seriously intolerant to motion, e.g. just seeing water moving in a stream set me off feeling wobbly and travel sick)) I’ve been a migraine sufferer since I was in my teens (25y ago), but I didn’t see any connection between the two. But in the end I had a diagnosis of MAV, and I managed to get things under good control with medication.

I was wondering if you’d be able to get a referral to a consultant with experience of MAV? If you would like to give us an idea of the country/region you live in, someone might be able to recommend an expert in your area. Otherwise, if you have a sympathetic GP, maybe they would be happy to trial you on some migraine medication?

Hi Jackie,

Yoru story sounds exactly like mine: BPPV attack in the middle of the night, weeks of physical therapy, clean MRI and sinuses, etc etc. Before that I was perfectly healthy but was a migraine sufferer and was taking atenolol for migraine prevention.

As Scott said, what probably happened is that you had a big bang that turned the BPPV into a long-standing MAV. That is what happened to me. I had two big bangs (couldn’t stand up, felt like room was spinning, heart pounding, incapacitated) followed by a year or more of general unsteadiness and fog. Basically, for some people, it is impossible for their brain to go back to where it was before the BPPV. You will need something to get the brain re-set – it could be anti-depressants, anti-seizure meds, beta-blockers, benzodiazapines, etc). The good news is that your story is very familiar here, and in 99% of cases, there is no serious life-threatening disorder like cancer or MS. However, it is extremely life-disrupting, and you should keep trying different things and different medicines till you get some relief. Stick around, learn more, and get a doctor who knows about this stuff and can start you on meds. I waited a year before trying MAV medicine, and it was a mistake – try to get some relief asap.