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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Hello, I do not have any experience with boilogic medicine but I suffered from Vertigo for several years. Every single minute of the day. I was tested for all kinds of things and the only thing that gave me my life back was getting craniosacral therapy with an orthobionomist. (a tmj specialist) This completely relieved the vertigo. Just thought you might consider this idea. Good luck:)

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@mamaitaly

Hello, I do not have any experience with boilogic medicine but I suffered from Vertigo for several years. Every single minute of the day. I was tested for all kinds of things and the only thing that gave me my life back was getting craniosacral therapy with an orthobionomist. (a tmj specialist) This completely relieved the vertigo. Just thought you might consider this idea. Good luck:)

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Thank you sooo very much for replying MamaItaly! I will bring that up and consider it!

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@mamaitaly

Hello, I do not have any experience with boilogic medicine but I suffered from Vertigo for several years. Every single minute of the day. I was tested for all kinds of things and the only thing that gave me my life back was getting craniosacral therapy with an orthobionomist. (a tmj specialist) This completely relieved the vertigo. Just thought you might consider this idea. Good luck:)

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You are so very welcome! I hope you figure it out. Vertigo is a horrible thing to deal with every day! Keep in touch and let me know how you are.

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@mamaitaly

Hello, I do not have any experience with boilogic medicine but I suffered from Vertigo for several years. Every single minute of the day. I was tested for all kinds of things and the only thing that gave me my life back was getting craniosacral therapy with an orthobionomist. (a tmj specialist) This completely relieved the vertigo. Just thought you might consider this idea. Good luck:)

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You are a sweetheart! Will do…

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I suffered with vertigo and was relieved by wearing a transdermscope (sp?) patch like that worn to combat seasickness. I settled on 1/2 a patch for 3 days at a time. I did develop an allergic reaction to the adhesive and treated it with a topical cream.

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I am sorry to hear about how you are feeling. If you are intersted in seeing a Mayo Clinic physician to disucss your health, please click on the “Request an Appointment” link on the upper right hand corner of the screen.

I hope you are feeling better soon!

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Google BPPV and see if those symptoms coincide with yours. There is a solultion if BPPV is what you have.

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@hopefulbaby6 I just started humira about a month ago and 4 days after my second shot I woke up with vertigo, the room was not spinning more like a rocking wobbly sensation if I sat still and didnt move my head I was fine but the minute I moved my head I got dizzy but later in the evening it let's up a little bit to were it is manageable…. I took my second shot on Dec. 8th and the vertigo started on Dec.12th and still on going I was fine all this last week except for yesterday it was really really bad I have talked to my humira ambassador, my Rhumatologist, my ENT doctor and went to my chiropractor yesterday… I am feeling better then I was yesterday. But dont know if it was the chiropractor or the prednisone that my ENT doctor out me on and started yesterday…. it is very debilitating I work in surgery and have already had to miss 4 days of work cause I cant drive with this… I just need this to stop and need to know what this is

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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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@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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Hi, @nad28, nice to meet you, and welcome to Mayo Clinic Connect. That is very rough that your vertigo has not gone away for one minute since March 2017. That is a long time to contend with vertigo.

When you mentioned you were diagnosed with vertigo, are you talking about benign paroxysmal positional vertigo (BPPV) https://www.mayoclinic.org/diseases-conditions/vertigo/symptoms-causes/syc-20370055?

You mentioned you can't take any medication, as it makes you worse. Have you tried a number of medications that had side effects you didn't care to deal with?

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@lisalucier

Hi, @nad28, nice to meet you, and welcome to Mayo Clinic Connect. That is very rough that your vertigo has not gone away for one minute since March 2017. That is a long time to contend with vertigo.

When you mentioned you were diagnosed with vertigo, are you talking about benign paroxysmal positional vertigo (BPPV) https://www.mayoclinic.org/diseases-conditions/vertigo/symptoms-causes/syc-20370055?

You mentioned you can't take any medication, as it makes you worse. Have you tried a number of medications that had side effects you didn't care to deal with?

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Hi Lisa, thanks for your reply! I'm not sure about the BPPV, I must ask my doctor about it. Yes I've tried many medication such as Serc then I was prescribed Stemetil as the 1st one made me worse. Stemetil was as bad. Then i was on Stugeron, I actually couldn't cope how drugged I felt on Stugeron, I had hallucinations, it was pretty scary. Then I was back on Vertigon, all of them worked pretty bad on me as all of the drugs have side effects so we had to stop, I'm on completely natural remedies at the moment and doing yoga every week, I'm not doing too bad. Vertigo is still here ,it's draining me emotionally and physically as I have it for so long but I don't lose hope it will go away 1 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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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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