Nightly Panic Attacks that led to Vertigo

Hi Everyone,

I don’t believe i ever shared this with you and wondering if anyone here can relate. Before i began having occasional Vertigo attacks in the late 1980’s that eventually led to MAV…i was having occasional Panic Attacks (early to mid 80’s) that would wake me up from sleep in the middle of the night. I was a young man at the time (early 30’s). Would have 2-3 per year…then after a number of years of the panic episodes… this evolved into Vertigo attacks at night that would wake me from sleep.

Also…I have mentioned that my main symptoms are Throbbing & Tension which equal Motion (felt inside my head). It’s kind of like my head feels like a Fishbowl or a bowl of Jello in that…if the fishbowl or bowl of jello is slightly moved…the fishbowl water or jello sways every which way. That is similar to what is felt inside my head. I know it sounds corney…but it’s true. Brian (from this forum)…also said he felt some of these symptoms so i was wondering if anyone could relate??

Joe

Hi Joe, I wish I couldn’t relate, but I can.
This motion in the head stuff has come on strong with me recently and I find it quite bothersome. I grab the Klonopin. :smiley:
I wish I could use it in the day but it makes me tired and bothers my balance. I only use it at night.
The motion in the head is worse in flo light situations and especially when I am on the computer.
Even eyeglasses can bring it on.
I hate it!

Heather

Joe and Heather,
Sounds familiar. I can’t really describe the weird head symptoms, and they are better with the klonopin–but lighting and computers and too much visual stimulation can make it worse.
Kira

Heather,

You might want to try a smaller dosage of Klonopin during the day so you don’t feel so sleepy? I have Motion all day long…but if there is more stimula…like crowded situations…or too much stress then the motion increases. If i could just somehow get ALL of the Tension out of my head and let it feel completely relaxed again…then i believe the Motion would go away. But the Tension continues.

Joe

Hey there Joe,

Don’t laugh, but, I have .50 dose pills. Even taking a quarter of a pill makes me tired.
Talk about a very sensitive central nervous system.
I am shocked when I read the high doses of benzos some people use.
I use Xanax in the day.

It seems almost insane to have to take a benzo to use my computer.
Eyeglasses really mess with me.
I’ve sick of the head motion, and all motion. I want NO motion. IOW, I want peace.
The ground pops up and down beneath my feet when I walk,
24/7.

I know no peace. . .

Heather

Heather,

If the small amount of Xanex makes you feel very sleepy…you might want to discuss with your doctor other Benzo’s like Klonopin, Valium, Ativan and new ones. I am lucky in that Xanex has given me some relief since i first began to take it back in 1992. It helps to make me feel more stationary. Although when i was taking 7 pills per day back in the 1990’s…people use to tell me i was slurring when i talked to them and i had to take a nap every day when i came home from work. But now that i currently take only one pill…i very rarely feel sleepy from medication.

Joe

It’s not the Xanax that makes me sleepy, it’s the Klonopin.
That’s why I use Xanax in the day, and Klonopin at night. I see you like Xanax like I do. :slight_smile:
I think Klonopin is better for motion in the head, but I won’t use it in the day,
since it makes my body unsteady. Kinda paradoxical, actually. Great for motion in my head, but not the body? Lol.
Oh heck, our bodies are all unique in how they respond to drugs.
As far as I’m concerned any drug that keeps me from driving over a cliff is worth its weight in gold.
I deal with the ground popping up and down 24/7. If I actually saw it popping up and down rather than feeling it, I think I would have
been over the cliff already.

I’m having a tough time of it, Joe.
Thanks so much for listening.

Heather

Heather, I resisted going on klonopin until the neuro-otologist told me I needed a break from the symptoms. I know what you mean about the floor moving. I personally, and Jenny has sent me a newsletter from a neurologist that also says this, believe that mal de disembarkment and MAV overlap. Mal de disembarkment is the feeling of movement, usually caused by a boat/car/airplane ride.
Although I grew up sailing, for years I would sway and everything would move–especially the computer, during the summers when I sailed. My first neuro-otologist agreed that I had mal de disembarkent, along with a “vestibulopathy”. I joined the MDD support group on Jenny’s advice–I just read their files and some emails.
For me, klonopin is a huge help–but there are times that the floor still moves under my feet…
I hope you get some relief.
I understand how you would want some peace.
Kira

HI Kira,

I agree. I have done 100’s of hours of research like I know many probably have here.
When your life is “kidnapped”, so to speak, you research to find out who stole it.
I myself have come up with a few possibilities and they are PLF, MAV, MdDS.Problem is, you can only DX PLF with exploratory surgery.
Isn’t that ridiculous?

I know a person can have both MAV/MdDS it doesn’t have to be either/or.
It became real obvious to me when I kept saying “the only time I feel okay is when I drive my car” that MdDS was possible.
I was having huge problems riding up and down high-speed elevators in my condo building with sinusitis.
So bad, my family had to come get me and drive me “home.”
So here I am thinking I am escaping the elevators only to realize that the long-distance car ride I took could set even more dastardly things in motion.
I hadn’t been a passenger on a long distance car trip since I was a kid. I have been prone to car sickness my whole life.

Then I had an MRI, and that night I will NEVER forget. They wanted to call an ambulance.
When the MRI machine began vibrating (it felt like a mild jackhammer on the back of my head) I knew I was in trouble.
That was the night the motion problems really took off.
So when they brought me out, I could feel my body going one way and the machine another way.
IOW, I was screwed. Something about the motion of the machine really messed me up.
Then when I stood up, they all ran to check my BP, but I knew it wasn’t a BP issue.
As soon as my eyes hit the flo lights, and I put glasses on, all hell broke loose.
I couldn’t feel the floor, my head was bouncing like a slinky and I was too afraid to lie down, completely. (But didn’t know why)
So I had to sit upright for an hour before feeling “normal” enough to drive my car home.

The motion sensitivity got so bad, I couldn’t even start the car without the vibration of the motor freaking me out.
Top that off with vision problems-- picture being in a passenger seat with your hand over one eye until the sun went down because the light hurt your eye and
vision was blurred, but you didn’t know why.
Like that wouldn’t mess up your vestibular system taking a long distance trip, crying, with one hand ove your eye?
My story is insane if you ask me.
I still don’t have my vision issues taken care of and we recieve 70% of our information from our eyesight.
So no doubt my brain says:
WTH is going on here???
Hell, I can put on a pair of reading glasses and the ground violently bounces up and down like a trampoline.
Frankly, had I not developed sphenoid sinusitis months ago (now chronic) I know I wouldn’t be in this boat today.
Problem is, a lot of ENT’s don’t know **** about sinusitis like I thought they would.
IMO, traveling or even riding elevators with sinusitis can set a person up for pure hell.

Bottom line-- I told my Dad I don’t care if I live or die. But I know deep within I DO care.
I’m just tired of being house-bound and too scared to get in the car anymore.
The more I try and drive, the more all hell breaks loose when I get OUT of the car.
And if an MRI machine can screw me up, do you think I’m going to get in a rotary chair? :shock:

Spielberg should hire me. I’d win an oscar for playing “motion” better than anyone.
I don’t just play motion, I am motion.

I’d love to drive to JH, but scared to even think of driving that far.
Heck, a ride to the grocery store can mess me up.
Good to meet you Kira! :slight_smile:

Heather

Heather,

Sorry i misunderstood you regarding Klonopin & Xanex. But now i understand. Yes…i prefer Xanex because it keeps me from being homebound and atleast i can work part-time…so far. Plus i can go to a movie or concert. There was a time at the beginning of this mess where i had to leave movie theatres and resteraunts. When your in a movie theatre or a resterant and all of a sudden you get this feeling that the room will be going into a Spin very shortly…i would begin to panic and leave. It feels like your out of control! Thank god…that has not happened in a long time! Every now and then i think about switching to Klonopin only because i understand it stays in your system much longer…but i just don’t want to risk it because if i stop Xanex and switch to another med and if i’m not satified with it and go back to Xanex…there is a possiblity that it work as well for me.

Heather…you are one of the few people who actually use the phrase “motion in the head”. Most folks just say they feel Motion when they are sitting or they feel motion when they walk. I recall at another forum a woman referred to herself as having a “Jello Head”…and now that i look back i can say my situation is similar.

Hang in there!

Joe

When your life is “kidnapped”, so to speak, you research to find out who stole it.

Heather,
Exactly what I’ve done.
I’ve had many, many sinus infections, and had 5 surgeries, and after the last, the vertigo got worse. I remember having it post-op and thinking it was low blood pressure.
Just FYI: after 5 surgeries, I discovered the use of low dose macrolides, and my ENT agreed with it, and it has made a huge difference in my sinus disease. There’s so much current theory that sinusitis is caused by biofilm formation, and opening up the sinuses with surgery doesn’t correct the problems with the lining. After 5 surgeries, I agreed. Low dose macrolides have been used in Japan and Anders Cervin wrote a number of articles. I take biaxin 250mg/day. It’s not an anti-infective dose, it’s an anti-inflammatory dose. There was a good article in Chest about low dose macrolides.
chestjournal.org/cgi/content … ppl/52S#T2

I know how horrible it feels to experience these feelings, and not find answers, and often not find help in the medical community. So many of us have felt despair and frustration. But people do get better from this, often despite medical intervention.

Another irony you’d appreciate: about 6 years ago, vestibular rehab was prescribed 2001–before my big crash in 2003–and I looked up exercises on the web, while waiting for the appointment, and did them violently–swinging my head in violent circles–and developed a sphenoid sinusitis–with pain on the top of my head that lasted for months, despite antibiotics. This was before the biaxin. I personally think I caused it by the head swinging. Normally, I was a frontal/ethmoid/maxillary sinusitis person, with a frontal sinus mucocele.

Heather, I hope you get some peace and relief. I know how hard it is to suffer with this.
Kira

Heather,

You have been through the mill - like the rest of us.

It took me almost a year to figure out howto get out of the house and to a doctor to even try to get a diagnosis and treatment. I decided to load up on Valium and go! It took a ton of doctor visits, testing, etc. In the meantime I found this forum and knew right away I had MAV and probably MdDS. I didn’t think I wanted to drug myself enough to get to Hopkins, but I found a neuro-oto who trained with Hain and went to see him. He started me on preventatives and I have had slow but steady improvement.

You have that Klonopin. Would it work to take enough to just put the seat back and go a long distance? I’m sorry if it sounds like giving advice, but getting the right Dx and treatment was my turning point.

Yep, I also long for peace. For the world (and the floor) to be still.

Hang in there,

Julie

— Begin quote from “joseph0952”

Heather…you are one of the few people who actually use the phrase “motion in the head”. Most folks just say they feel Motion when they are sitting or they feel motion when they walk. I recall at another forum a woman referred to herself as having a “Jello Head”…and now that i look back i can say my situation is similar.

Hang in there!

— End quote

Thanks for the positive support Joe! :slight_smile:
Maybe I’m just more specific?
I have a lot of motion going on in different places: when I sit (especially in flo lights! God How I hate doctor’s offices) when I walk,
(picture feeling like even your spine is bouncing at times when you are on the floor trying to tie your tennis shoes)
but when that motion in the head is going on, it’s like your brain moving back and forth on a raft at sea.

I just want everything to be peaceful. And that would mean no motion at all.

Heather

— Begin quote from “Julie”

It took me almost a year to figure out howto get out of the house and to a doctor to even try to get a diagnosis and treatment. I decided to load up on Valium and go!
Yep, I also long for peace. For the world (and the floor) to be still.

— End quote

Ya know, this is a real crapshoot with me.
Of course we all want a DX. But Julie, that night I had the MRI REALLY messed me up.
Physically and emotionally. I was on a cane for 2 weeks after that.

I still can’t figure out what happened to me that night and that was in January!
When things that shouldn’t hurt you do, I cringed when some idiot at the balance center said on the phone “we’re gonna make you dizzy!!!”
I thought, oh for crying out loud. I have vertigo/motion as it is, and now I am I actually going to allow (and pay) someone to make me dizzy?
Is there a cure for MdDS? Nope.
Is there a cure for MAV? Not really.
I do not have menieres, and even if I did, again, there is no cure.
My point? Do I want to risk harming myself to get a DX for which there is no cure?
Nope.

Would I take SSRIs or AD’s, beta blockers etc? Nope.
Anti-migraine meds like Topomax? Nope.
So what am I doing? If I know what I would and would not do, what is the point of going through the hell?
Even one of my docs said she would never submit to a rotary chair test in the dark.
At least she was honest. :slight_smile:

Heather

Heather,

It sounds like you have thought through the risk:benefit ratio well.

Benzos have helped me the most, and even though you’re sensitive, at least you’re willing to take them.

FYI - the people at Hopkins told me on the phone - they don’t do rotary chair or posturography. They believe it provides them with little information and with too much torture to the patient. They did use the word torture. My doc feels the same way, didn’t suggest either of them. He told me he knew of at least one patient who after the rotary chair was much worse for months.

the ENG, I’ve been “lucky” enough to have avoided, so far. My neuro-oto didn’t need it - saw MAV the minute I walked in. But I’m not sure anybody else would let you get away without it. AND - they require that you have it without any kind of vestibular sedation for 2-3 days. So I guess I won’t be having one anytime soon!

Oh Heather, it sure feels like we’re paralyzed by lack of reasonable options.

Julie

Julie,

A number of years ago when my Psyciatrist at the time thought i had Inner-ear dysfunction w/anxiety…he sent me to the Stanford Ear Institute to go thru a number of tests. I was taking much more medication back in the mid 1990’s and had to go off ALL medication the night before testing. I had a friend pick me up and drive me and i felt like a Zombie case. At that time i believe i was on an SSRI and 7 Xanex’s a day! I got thru all the tests fairly well except the very last one which was called the ENG where they put water in your ear that causes vertigo like symptoms. I was reluctant to go thru that test but the Technician said only about 5% of people have trouble with this test. I told her i have always been Motion Intolerant including Motion Sickness…but she said i would be fine. So the test began and as the water went into my ear the spinning began and it overwhelmed me and made me feel sick…so i screamed out to please stop the test. She said just one more minute…and i said “NO”. So the Technician stopped and the test was incomplete. Soon as the test stopped…i visited the restroom and vommited. The tech said it’s rare for people to get that sick. On the way home my friend had to stop at the side of the free way because i got sick again. It was a TOTAL Nightmare!! To make matters worse…one week after the Eng i began to have Intermittant Tinnitus. I honestly believe it was brought on by the stress of this test. Doctors say that could not happen.

Joe

Hi Heather , just a shot in the dark here, sorry if I missed this, but did you have contrast dye during your MRI?
if so could you have been allergic to it?
it’s just that some people are allergic to the dye.
I wonder if this could have made things worse.
jen

— Begin quote from “jennyd”

Hi Heather , just a shot in the dark here, sorry if I missed this, but did you have contrast dye during your MRI?
if so could you have been allergic to it?
it’s just that some people are allergic to the dye.
I wonder if this could have made things worse.
jen

— End quote

No, I purposely declined contrast. Good thing, too. I would have blamed the contrasting agent.

Heather

— Begin quote from “joseph0952”

had to go off ALL medication the night before testing. I had a friend pick me up and drive me and i felt like a Zombie case. At that time i believe i was on an SSRI and 7 Xanex’s a day! I got thru all the tests fairly well except the very last one which was called the ENG where they put water in your ear that causes vertigo like symptoms. I was reluctant to go thru that test but the Technician said only about 5% of people have trouble with this test. I told her i have always been Motion Intolerant including Motion Sickness…but she said i would be fine. So the test began and as the water went into my ear the spinning began and it overwhelmed me and made me feel sick…so i screamed out to please stop the test. She said just one more minute…and i said “NO”. So the Technician stopped and the test was incomplete. Soon as the test stopped…i visited the restroom and vommited. The tech said it’s rare for people to get that sick. On the way home my friend had to stop at the side of the free way because i got sick again. It was a TOTAL Nightmare!! To make matters worse…one week after the Eng i began to have Intermittant Tinnitus. I honestly believe it was brought on by the stress of this test. Doctors say that could not happen.

— End quote

See, this scares the piss out of me. Why? I am very motion sensitive right now.
I just had another sinus CT scan and the mere motion of being conveyed into the tube was freaking me out.
Ever since the night of my MRI in January, I have not been the same.
Anyhow, the more stories I read from both men and women, the more I do not want to be spun around in a chair in the dark or have an ENG.
I remember what happened to me with Tympanometry and that isn’t even supposed to do anything to you at all.
The pressure exerted in my right ear that day, rocked my brain like an earthquake and I had pain above my left eyebrow.
I yelled out loud, “Jesus H. Christ!” and pulled the ear piece out of my ear–fast. I didn’t care if the test had to stop.
There was one gal on another group who had the rotary chair test done and the dizziness she got from it was not temporary.
I mean WTH? Risk making myself worse for a DX there is no cure for?
One of my Doctors said she would never allow anyone to spin her around in a chair in the dark.
My Dad and brother cannot believe Docs can’t figure out what is wrong with people without putting them through such nonsense.
I agree. Geez is this 2008 or 1968? :shock:

Heather

Julie,

You hit the nail on the head.
Yes I have done my homework well. Too well.
Now I have analysis paralysis. Lol.

Great info there about JH. Unfortunately at UPMC they ordered both an ENG and Rotary chair for me.
I canceled. Haven’t rescheduled.
The more I read, the less likely I will submit to something that will make me worse.
Posturography tortures the patient? How so?
I could see an ENG or rotary doing it .

Ya, I saw the paperwork here in my city-- no Benzos for 2 days. Oh puuuuuuhhhhhhleeeeeeeeze.
That’s negligent to even suggest someone suddenly stop taking Benzos who has been taking them every day.
I could see the brain over-firing just from that act alone. (suddenly stopping)
Not to mention, with me, it’s the car ride that can really screw me up.
So I thought to myself, hell, my tests could come out one way not because of the test itself, but because of the car ride I took to get TO the test.
Oh the irony . . .

Heather