Many months of 24/7 vertigo...very debilitating

Posted by hopeful_baby6 @hopefulbaby6, Mar 22, 2012

Hi all, this is my first post on this site. I have had Rheumatoid Arthritis for 13 years, I am currently 45, turn 46 shortly. I have been on many biologics, basically since they came out, including Remicade, Enbrel, Humira, and Orencia. After having many infections in a short amount of time (approx. 2 months), I was on and off of my Humira. During this period, I woke up with extreme dizziness, 24/7, do not even have to move my head or open my eyes. This lasted for 8 1/2 months! I quit my Humira all together, as we had to look at this as a possible reason for my central vertigo. It has been proven through inner ear testing that it is central. I also had an MRI of brain done which came back normal. My RA and Osteoporosis became very bad after being off the biologics for about a year due to the horrible vertigo. It became so bad that I finally decided recently to try Orencia. My vertigo had subsided, and it was about 85% gone for about 2 1/2 months, then returned after only a month on Orencia, and is exactly as it was before, 24/7, very miserable, in which my head perceives it is in constant motion. I have a rocking sensation in my head at all times, worse when laying down, feel very drugged, very off balance. I have to believe this is due to these biologics!! Has anyone else experienced anything like this with biologics or other meds for other chronic illnesses? I would so appreciate your comments! I have been to several neurologists who cannot grasp this, so I have been left to suffer immensely…Thanks for your time!

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@joant

Don’t know if you ever got an answer but Check out Superior Semicircular Canal Dehiscence. Should not be flying if you have sscd.

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Hello @joant and welcome to Mayo Clinic Connect. Thank you for joining the discussion to share with @nad28.

Do you have personal or familial experience with Superior Semicircular Canal Dehiscence?

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@amandajro

Hello @joant and welcome to Mayo Clinic Connect. Thank you for joining the discussion to share with @nad28.

Do you have personal or familial experience with Superior Semicircular Canal Dehiscence?

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Yes, I have autophony, hearing loss, tinnitus and vertigo. I have not found any ent that are knowledgeable in sscd Michigan or Florida.

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I’m sorry I have never taken biologics. You may be like me and have more than one issue causing the vertigo. I’ve found when I lay on my left side or on my back I wake up with vertigo so I sleep sitting up which seems to help. Not sure what all those medications are but my friend had great luck with infusion for rheumatoid.

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I have severe balance problems as so many of us do. My "neurologist" said it was my imagination. I then fell badly and went to the ER. They could find nothing wrong with my vestibular apparatus. Then the audiologist sent me to a PhD vestibular expert. She put me in a totally black room where I had no visual support for up or down or any direction and it was totally silent except for the whir of her machines. She took a number of x-ray or MRI type recordings of the electrical (?) emanations (?) and they indicated I had a good deal of demyelination going on in my cerebellum and brain stem. She confirmed the ear was perfect wrto (with respect to) vestibular apparatus.
I would like to read what other people with severe balance problems have done wrto living with this problem. Simple things I used to do have become a subject to debate if I turn my head too fast….I am very careful when I drive about that!

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@bodega

I have severe balance problems as so many of us do. My "neurologist" said it was my imagination. I then fell badly and went to the ER. They could find nothing wrong with my vestibular apparatus. Then the audiologist sent me to a PhD vestibular expert. She put me in a totally black room where I had no visual support for up or down or any direction and it was totally silent except for the whir of her machines. She took a number of x-ray or MRI type recordings of the electrical (?) emanations (?) and they indicated I had a good deal of demyelination going on in my cerebellum and brain stem. She confirmed the ear was perfect wrto (with respect to) vestibular apparatus.
I would like to read what other people with severe balance problems have done wrto living with this problem. Simple things I used to do have become a subject to debate if I turn my head too fast….I am very careful when I drive about that!

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First, immediate imbalance/vertigo after turning your head quickly is BPPV–benign positional paroxysmal vertigo. Many older people have it as their vestibular systems don't work as well as they used to. The vertigo is very momentary (doesn't last more than seconds) and often happens when you turn over or start to get up from sleeping. Lots of us with other inner ear disease also are "treated" to BPPV, just to add to the fun.

Answer to imbalance/vertigo is to learn to use your third balance system, proprioception. When your inner ear isn't as effective as it used to be, you automatically begin to use vision (second balance system). That's bad, because every time you move your head you lose your position in space. Simply put, proprioception is leaning just the right amount into the wind when you're standing on a very windy exposed place. Your feet, ankles, knees, legs, hips are all very important to using proprioception. The simplest thing to do is to stand with your eyes closed, thinking about your feet, as long as you can without wobbling. Then, walk a short distance, eyes closed (in a safe place like a hallway). Start in sock feet and progress to wearing shoes, which makes the exercise more difficult. Do NOT use night lights: instead, walk in your house at night without any lights on (after checking for anything that could trip you, of course). Don't use a flashlight outside, but let your feet tell you about the surface underfoot. When you're walking a distance outside in the light, do NOT stare at the ground ahead: instead, look ahead 10-20 feet to check for obstacles, then let your feet lead you that distance while enjoying the things around you/above you. There are specific exercises, but that's the core of vestibular rehab (VRT). IF (big word, that!) you do VRT for 10-15 minutes every day, you will feel far more secure within a month, or less. The great thing about VRT is that you can do it as part of your daily life, at any time.

I have Meniere's, now bilateral (both ears), am 79, and still do very difficult instream data collection for our state fisheries agency, in a remote watershed by myself with no cell reception for about 20 miles. I've had nonfunctional inner ear balance systems for nearly 40 years. Every time I slack off on VRT, I quickly have less confidence moving around; the small effort is very worthwhile. Try it!

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@bodega

I have severe balance problems as so many of us do. My "neurologist" said it was my imagination. I then fell badly and went to the ER. They could find nothing wrong with my vestibular apparatus. Then the audiologist sent me to a PhD vestibular expert. She put me in a totally black room where I had no visual support for up or down or any direction and it was totally silent except for the whir of her machines. She took a number of x-ray or MRI type recordings of the electrical (?) emanations (?) and they indicated I had a good deal of demyelination going on in my cerebellum and brain stem. She confirmed the ear was perfect wrto (with respect to) vestibular apparatus.
I would like to read what other people with severe balance problems have done wrto living with this problem. Simple things I used to do have become a subject to debate if I turn my head too fast….I am very careful when I drive about that!

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Tia Chi exercise helps me

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Tai Chi is very helpful, as it makes you aware of your entire body (instead of relying on vision).

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Hi all! I am definitely no expert in vertigo but do know a bit about sensory dysfunction. I thought that might be the problem with my mom. She is 72 years old and developed vertigo to the point where she could not turn her head without experiencing extremely bad dizziness and vision blurring. Her PCP couldn't find anything wrong so she was referred to an ophthalmologist. They did multiple tests and could not find anything except that her eye muscles were weak and said she could have "special glasses" made to strengthen her eyes. They did say that at her age, it is normal for her eye muscles to weaken. However, for a reason I am not sure of, they requested that she visit her endocrine doctor (as she has hypothyroid) to rule anything else out. Turns out, she was low on Vitamin B12. The doctor gave her a shot and within a few minutes the vertigo was gone. She has a prescription for B12 and takes it daily. The vertigo is completely gone and she didn't have to get the glasses. I don't know if this is helpful but figured I would share.

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@keeg1010

Hi all! I am definitely no expert in vertigo but do know a bit about sensory dysfunction. I thought that might be the problem with my mom. She is 72 years old and developed vertigo to the point where she could not turn her head without experiencing extremely bad dizziness and vision blurring. Her PCP couldn't find anything wrong so she was referred to an ophthalmologist. They did multiple tests and could not find anything except that her eye muscles were weak and said she could have "special glasses" made to strengthen her eyes. They did say that at her age, it is normal for her eye muscles to weaken. However, for a reason I am not sure of, they requested that she visit her endocrine doctor (as she has hypothyroid) to rule anything else out. Turns out, she was low on Vitamin B12. The doctor gave her a shot and within a few minutes the vertigo was gone. She has a prescription for B12 and takes it daily. The vertigo is completely gone and she didn't have to get the glasses. I don't know if this is helpful but figured I would share.

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Hello @keeg1010
I'm glad that your mom's vertigo problem was solved so quickly and easily. I appreciate you sharing how a low Vitamin B12 level can contribute to vertigo.

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I had never heard of vertigo caused by a B12 deficiency but you learn something every day 🙂

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