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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@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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@nad28

Hi , did you improve, hows is your vertigo now? I was diagnosed with it in may 2016 my symptoms lasted for 6 weeks and went away for 9 months, then the vertigo came back in March 2017 and never went away even for 1 minute ever since. I have it now for 23 months non stop.It's awful, sickening in the head , feel like drugged or drunk all the time. I get it worse after flying and my symptoms get very bad for 6 weeks after flying. I have a small brain cyst , it's not dangerous and its fluid filled. Other than that no illnesses, checked my neck, had a neck MRI, checked my ears, I was told no inner damage so it's not Meniers disease as I was told in may 2016. So far I have been getting slightly worse every year, have worse tinnitus, worse headaches, more lightheaded than before. I cant take any medication as it only makes me worse. So I'm off everything, curing myself with herbs and fresh veg and fruit juices, stay active, doing yoga, going to accupuncture and massage treatments every week .So far no improvement in vertigo symptoms at all, its still here 24/7. Also I cant drink alcohol at all, I had some months ago over xmas,thought I was gonna die, I was in bad way for 8 weeks after consuming 3 glasses of red wine. And I can't eat too salty food, literally nearly fainting when my meal is a bit too salty, my vertigo gets 10/10 , I get a relief when its 2/10, normally its 5/10 and having bad weeks when its 8/10.

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Hoping that things have gotten better for you in the last few years. I am new to this journey but have found amazing relief and focus from The Steady Coach on YouTube. Please, everyone, check her out! Very well life changing.
I am also doing PT for horizontal canal issue, cervicogenic dizziness, and vestibular-occular issues.

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@amandamarieb

Hoping that things have gotten better for you in the last few years. I am new to this journey but have found amazing relief and focus from The Steady Coach on YouTube. Please, everyone, check her out! Very well life changing.
I am also doing PT for horizontal canal issue, cervicogenic dizziness, and vestibular-occular issues.

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Hi, yes , thank you! I got better when I stopped worrying about it altogether. I have done acupuncture for a year. It helped so much! Doing mindfulness, self work , setting my mind on illness free
health mode. If you believe your body is capable of healing itslef,- healing happens ! Also I do detox and get rid of parasites(worms) every 6 months , take herbal remedies, no meds nor chemicals in anything , sugar free and low salt diet, organic
whole food only, also fasting. Trying to keep the cells free from the glucose and toxins , otherwise illnesses and viruses stick if they have what to live off in the body . People do not realise how powerful our mind is and how much damage do we do with toxins (physical and mental) to our only best friend- our body.

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@nad28

Hi, yes , thank you! I got better when I stopped worrying about it altogether. I have done acupuncture for a year. It helped so much! Doing mindfulness, self work , setting my mind on illness free
health mode. If you believe your body is capable of healing itslef,- healing happens ! Also I do detox and get rid of parasites(worms) every 6 months , take herbal remedies, no meds nor chemicals in anything , sugar free and low salt diet, organic
whole food only, also fasting. Trying to keep the cells free from the glucose and toxins , otherwise illnesses and viruses stick if they have what to live off in the body . People do not realise how powerful our mind is and how much damage do we do with toxins (physical and mental) to our only best friend- our body.

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That is wonderful news, and great info!
How do you keep your glucose down, and what parasite cleanse do you do?
I've been doing a lot of stress work as well as doing it nucca chiropractic, and physiotherapy. Getting a bunch of lab work done through a functional medicine doctor and eating an anti-inflammatory diet, and doing tons of walking and stretching.

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