Dizziness & Vertigo Support Group
Dizziness is the sensation of instability. Vertigo refers to dizziness with a sensation of motion. Vertigo is more likely than other types of dizziness to be associated with nausea, vomiting, or double vision, to occur even when lying down, and to feel better with the eyes closed. If you are a frequent sufferer of dizziness or vertigo, join the group and find support.
I thought I would share the background of what brought me here so you all can understand where I am coming from.
Harmless "dizzy spells" had occurred several times when I was younger, usually during times of high stress or when someone made me very angry. I would take Dramamine, lie down for a nap, and it would go away.
Then last summer I took a job that turned out to be highly stressful on a daily basis. By late December the vertigo was coming and going. I was having terrible splitting headaches. My head would hurt so bad, even after coming home to relax, I would have to put a heating pad on my pillow at night to soothe the back of my head.
The first week of January 2012, the vertigo hit me like a train. I woke up in the middle of the night to go to the bathroom. I managed to make it to the toilet. As I woke up more, I realized I was about to throw up. Everything was spinning inside my head. When I looked around or tried to talk, the nausea intensified. I sat on the toilet, arms around my knees, rocking back and forth for about half an hour. It finally woke up my husband. He came to ask what was wrong. I distinctly remember I couldn't give him a full answer because I was pacing my breathing and scared to talk. A few minutes later I decided I couldn't spend all night sitting there. I made myself stand. The nausea overwhelmed me and I puked into the toilet. For a few minutes afterward I felt better. I thought maybe I'd simply eaten something that made me sick. I went back to bed.
A few hours later, morning came, and I woke up with the vertigo back in full force. I was lying on my back, trying to convince my husband that I could not move without puking again. I leaned over the edge of the bed and promptly puked all over the carpet. He called 911.
The ER doctors had to give me two pints of water. They had me take some zofran to calm the nausea and told me to see a doctor.
The first primary doctor I went to literally could not care less about my condition. He said, "you have vertigo, it's usually nothing serious and should go away in a few days." My husband asked what vertigo was. He said, don't worry I'll give you paperwork to explain it all. I got a prescription for meclizine and a printout on the basics of vertigo.
A month later, the meclizine was barely helping and it hadn't gotten any better. I was dizzy 24/7. As in, it literally never went away. Around that time the anxiety came in. I started getting nervous and having a rapid pulse throughout the day. I went back to my primary doctor's office, but this time saw a different doctor. He took it more serious and referred me to a neurologist. He also gave me diazepam to help keep me calm.
The neurologist was (for me) a waste of time. He entered the room with the assumption I was either lying to get valium or had MS. He kept saying things like, we need to get you off that medicine, you can't take that stuff forever. Two MRIs and lots of lab testing later (which took from Feb to April) he ruled out MS, lupus, and fibro.
He had made me wear a cardio monitor for 48 hours. It clocked my pulse going over 170 during an attack. He freaked out and said I needed to see a cardiologist. I said no, there is nothing wrong with my heart, it's coming from my nerves.
At that point the neuro said, well I am out of ideas, just go on and maybe it will resolve itself. He refilled my diazepam at 2.5 mgs twice a day, insisting I did not need any more than that.
By this point, I'd already gotten several absences at work. There was one day I was sitting in my cube, head resting on my desk fighting off a panic attack. My boss walked up and said, OMG you look like you're about to burst into tears. I said I didn't want to leave because I couldn't afford to keep getting occurrences. She made me go home and even told me to wait for my husband because she was afraid to let me drive.
Meanwhile, I took it upon myself to see an ENT. They checked my hearing and couldn't find any immediate causes. I had to repeat all the same information, no I'm not pregnant, no I did not fall down and bump my head, no I have not recently recovered from a nasty viral infection. The ENT said, okay let's schedule a VNG test - oh it looks like the next available slot is in July (this was late May). I was like, fine whatever, let's do it then.
About a week later, I had my watershed moment. This was right around May 30. I started having a panic attack around 8:00 at night. My husband said, take your medicine and make yourself relax. But 5mgs of valium and more meclizine didn't reverse it. I was pale, hyperventilating, sweating, groaning, and almost in tears. He didn't want to spend more money on another ER visit, so he took me to an urgent care clinic.
Boy was that an adventure. They didn't believe me about my situation. The triage nurse assumed I was either pregnant or high on drugs, despite my protests to the contrary. They made me walk to a restroom in the back to submit a urine sample and then put me at the bottom of the triage list. After an HOUR of watching me dry heave into a trash can, my husband grabbed the first doctor he saw and threatened to call 911.
Although that doctor initially bristled at my husband's rudeness, he did come and see me. He gave me a shot of phenergan and a refill on my zofran script. But best of all, he actually believed me. He remarked that the neurologist limited my valium script too much.He asked if I had ever done physical therapy. I said no. Turns out he had a PT friend who specializes in vestibular rehab.
The first week in June, I turned in my notice at my job and started seeing a therapist. By that point, I was dependent on my husband to drive me everywhere, could not go on long walks, could not read for pleasure, and could not do anything that involved a lot of bending.
We had twice weekly sessions for a month. It helped a lot. By July 3 when I finally went for that VNG, I'd made so much progress the results came back normal. VNG is where they make you wear the special goggles with tiny cameras inside to monitor your eye movement. They also blow cold air into your ear canal and force you to think of random things so they can record how your brain performs during stress.
By the time of all this, the therapy (as well as the help of quitting my job) had mad the vertigo disappear. The ENT declared me healed and sent me on my way.
I had four blissful weeks of freedom. I even started looking for another job.
Then the plot thickened. About a week ago, I awoke in the middle of the night with stomach pains and had to use the bathroom right away. As I sat on the toilet half asleep, this little voice spoke in my head: "you're about to get sick again." I felt a short burst of vertigo, but I waved it off as paranoia and went back to bed.
On Monday night, around 9:00, back it all came. It started with the panic first. Rapid pulse, sweaty palms, uneven breathing. I told my husband I wanted to take one of my leftover valiums. He said it was dangerous to rely on sedatives and wanted me to try to fight through it. An hour later, I took the last of my zofran and sat on the couch trying desperately not to throw up again. The vertigo came back strong as ever. I could barely move my eyes around the room.
After spending most of the night dry heaving, I awoke to things being little better. My husband was already gone to work. I couldn't even keep down a sip of coffee. Without any way to take the meclizine I couldn't stop the vertigo, but if I didn't stop the vertigo I couldn't stop the nausea. I remembered the disastrous trip to the urgent care place. The only time I'd ever really felt safe was the ER. I called 911 again. I managed to get ahold of my husband, and he met me at the hospital.
This time my attending doctor in the ER was very kind and sympathetic. They gave me an injection of zofran and a stronger dose of meclizine. When they finally got me stabilized, they sent me home with a recommendation to return to PT.
I went back to my family doctor to get a PT referral. He walked in the room, hardly glanced at me, said oh you're here to get a referral, and printed it out as fast as he could.
Yesterday was my first visit back to PT. I've now been through Dix Hallpike so many times she lets me do it at home. It does help.
Based on my own experience and research, it seems that one of my ears (probably the left) has a weakness and is prone to developing loose crystals. Canalith repositioning will fix it for a few weeks.
I am afraid that I will ultimately need surgery to prevent it from reoccurring. I haven't yet mentioned this to my husband because of the money. Duke University is kind of close to me and has a vertigo clinic. If I can keep a low stress job for a few months and nurse my own flare ups, I think I can eventually convince him to go for it.
In the meantime, I take one day at a time, thank God for the times I feel good enough to work, and pray His will be done. Healing might come n the form of surgery, but healing will come.
Harmless "dizzy spells" had occurred several times when I was younger, usually during times of high stress or when someone made me very angry. I would take Dramamine, lie down for a nap, and it would go away.
Then last summer I took a job that turned out to be highly stressful on a daily basis. By late December the vertigo was coming and going. I was having terrible splitting headaches. My head would hurt so bad, even after coming home to relax, I would have to put a heating pad on my pillow at night to soothe the back of my head.
The first week of January 2012, the vertigo hit me like a train. I woke up in the middle of the night to go to the bathroom. I managed to make it to the toilet. As I woke up more, I realized I was about to throw up. Everything was spinning inside my head. When I looked around or tried to talk, the nausea intensified. I sat on the toilet, arms around my knees, rocking back and forth for about half an hour. It finally woke up my husband. He came to ask what was wrong. I distinctly remember I couldn't give him a full answer because I was pacing my breathing and scared to talk. A few minutes later I decided I couldn't spend all night sitting there. I made myself stand. The nausea overwhelmed me and I puked into the toilet. For a few minutes afterward I felt better. I thought maybe I'd simply eaten something that made me sick. I went back to bed.
A few hours later, morning came, and I woke up with the vertigo back in full force. I was lying on my back, trying to convince my husband that I could not move without puking again. I leaned over the edge of the bed and promptly puked all over the carpet. He called 911.
The ER doctors had to give me two pints of water. They had me take some zofran to calm the nausea and told me to see a doctor.
The first primary doctor I went to literally could not care less about my condition. He said, "you have vertigo, it's usually nothing serious and should go away in a few days." My husband asked what vertigo was. He said, don't worry I'll give you paperwork to explain it all. I got a prescription for meclizine and a printout on the basics of vertigo.
A month later, the meclizine was barely helping and it hadn't gotten any better. I was dizzy 24/7. As in, it literally never went away. Around that time the anxiety came in. I started getting nervous and having a rapid pulse throughout the day. I went back to my primary doctor's office, but this time saw a different doctor. He took it more serious and referred me to a neurologist. He also gave me diazepam to help keep me calm.
The neurologist was (for me) a waste of time. He entered the room with the assumption I was either lying to get valium or had MS. He kept saying things like, we need to get you off that medicine, you can't take that stuff forever. Two MRIs and lots of lab testing later (which took from Feb to April) he ruled out MS, lupus, and fibro.
He had made me wear a cardio monitor for 48 hours. It clocked my pulse going over 170 during an attack. He freaked out and said I needed to see a cardiologist. I said no, there is nothing wrong with my heart, it's coming from my nerves.
At that point the neuro said, well I am out of ideas, just go on and maybe it will resolve itself. He refilled my diazepam at 2.5 mgs twice a day, insisting I did not need any more than that.
By this point, I'd already gotten several absences at work. There was one day I was sitting in my cube, head resting on my desk fighting off a panic attack. My boss walked up and said, OMG you look like you're about to burst into tears. I said I didn't want to leave because I couldn't afford to keep getting occurrences. She made me go home and even told me to wait for my husband because she was afraid to let me drive.
Meanwhile, I took it upon myself to see an ENT. They checked my hearing and couldn't find any immediate causes. I had to repeat all the same information, no I'm not pregnant, no I did not fall down and bump my head, no I have not recently recovered from a nasty viral infection. The ENT said, okay let's schedule a VNG test - oh it looks like the next available slot is in July (this was late May). I was like, fine whatever, let's do it then.
About a week later, I had my watershed moment. This was right around May 30. I started having a panic attack around 8:00 at night. My husband said, take your medicine and make yourself relax. But 5mgs of valium and more meclizine didn't reverse it. I was pale, hyperventilating, sweating, groaning, and almost in tears. He didn't want to spend more money on another ER visit, so he took me to an urgent care clinic.
Boy was that an adventure. They didn't believe me about my situation. The triage nurse assumed I was either pregnant or high on drugs, despite my protests to the contrary. They made me walk to a restroom in the back to submit a urine sample and then put me at the bottom of the triage list. After an HOUR of watching me dry heave into a trash can, my husband grabbed the first doctor he saw and threatened to call 911.
Although that doctor initially bristled at my husband's rudeness, he did come and see me. He gave me a shot of phenergan and a refill on my zofran script. But best of all, he actually believed me. He remarked that the neurologist limited my valium script too much.He asked if I had ever done physical therapy. I said no. Turns out he had a PT friend who specializes in vestibular rehab.
The first week in June, I turned in my notice at my job and started seeing a therapist. By that point, I was dependent on my husband to drive me everywhere, could not go on long walks, could not read for pleasure, and could not do anything that involved a lot of bending.
We had twice weekly sessions for a month. It helped a lot. By July 3 when I finally went for that VNG, I'd made so much progress the results came back normal. VNG is where they make you wear the special goggles with tiny cameras inside to monitor your eye movement. They also blow cold air into your ear canal and force you to think of random things so they can record how your brain performs during stress.
By the time of all this, the therapy (as well as the help of quitting my job) had mad the vertigo disappear. The ENT declared me healed and sent me on my way.
I had four blissful weeks of freedom. I even started looking for another job.
Then the plot thickened. About a week ago, I awoke in the middle of the night with stomach pains and had to use the bathroom right away. As I sat on the toilet half asleep, this little voice spoke in my head: "you're about to get sick again." I felt a short burst of vertigo, but I waved it off as paranoia and went back to bed.
On Monday night, around 9:00, back it all came. It started with the panic first. Rapid pulse, sweaty palms, uneven breathing. I told my husband I wanted to take one of my leftover valiums. He said it was dangerous to rely on sedatives and wanted me to try to fight through it. An hour later, I took the last of my zofran and sat on the couch trying desperately not to throw up again. The vertigo came back strong as ever. I could barely move my eyes around the room.
After spending most of the night dry heaving, I awoke to things being little better. My husband was already gone to work. I couldn't even keep down a sip of coffee. Without any way to take the meclizine I couldn't stop the vertigo, but if I didn't stop the vertigo I couldn't stop the nausea. I remembered the disastrous trip to the urgent care place. The only time I'd ever really felt safe was the ER. I called 911 again. I managed to get ahold of my husband, and he met me at the hospital.
This time my attending doctor in the ER was very kind and sympathetic. They gave me an injection of zofran and a stronger dose of meclizine. When they finally got me stabilized, they sent me home with a recommendation to return to PT.
I went back to my family doctor to get a PT referral. He walked in the room, hardly glanced at me, said oh you're here to get a referral, and printed it out as fast as he could.
Yesterday was my first visit back to PT. I've now been through Dix Hallpike so many times she lets me do it at home. It does help.
Based on my own experience and research, it seems that one of my ears (probably the left) has a weakness and is prone to developing loose crystals. Canalith repositioning will fix it for a few weeks.
I am afraid that I will ultimately need surgery to prevent it from reoccurring. I haven't yet mentioned this to my husband because of the money. Duke University is kind of close to me and has a vertigo clinic. If I can keep a low stress job for a few months and nurse my own flare ups, I think I can eventually convince him to go for it.
In the meantime, I take one day at a time, thank God for the times I feel good enough to work, and pray His will be done. Healing might come n the form of surgery, but healing will come.
If it's the BPPV ear crystal thing, at least you have a real diagnosis. Congrats. I'm sure it will not be so easy to deal with, but repositioning sounds promising for you.
Doesn't do a darn thing for others of us. So, I hope you can keep it managed well doing the head movements. :)
I understand that money is not always there, but if you have insurance, you should look into it and do what is best for you to get your life back.