Chronic dizziness and vestibular migraines

Posted by kimh33 @kimh33, Feb 25, 2016

Hello ^_^

My name is Kim. I am 33 years old and have been dizzy every single day for the last four years. I have had blood tests that have come back normal, an MRI which showed no abnormalities and I have seen a Neurologist and an ENT who did all the different tests and could find nothing wrong with me. The ENT, six months ago, decided that I must have Vestibular Migraine and prescribed me Pizotifen. I have not taken these at all because I am not convinced that I have had a four year unrelenting migraine and also she told me that it is common to put on lots of weight while on Pizotifen so I am not thrilled about that for sure.

I am supposed to go back in a week for a follow up visit but I think I will just cancel it because she can’t really follow up if I am not taking her advice.

I just wish I could work out what could cause four years of dizziness like this. I am still functioning, I can force myself to go out, to work, to college and pretend like everything is normal. I am not falling over but have the constant sensation that I’ve had a glass of wine too many. I can no longer drive a car. I do not get headaches or any other symptoms. Just the neverending dizziness.

I struggle at work. Every day I think about quitting and just staying at home but then I force myself to carry on as I do not want this feeling to become a disability. The only time that I feel ‘normal’ is lying down in bed at night. I also feel better sitting, not normal but definitely improved. However as soon as I have to walk anywhere, it’s back.

I was thinking about trying Sertraline as I read somewhere that it can help chronic dizziness but I’m scared of the other potential side-effects or if it is even worth trying. I might just be clutching for any solution here. Has anyone got any suggestions on anything that I can do? I’m really willing to try mostly anything at this stage!

@doc3rob

Which 2 supplements?

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riboflavin and magnesium

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Hello Kim
My name is John and I have been with this motion disorder going on ten years now. I to have gone to numerous doctors and had every conceivable test they could do to you and everything within normal limits, just like you. I finally went a different way and went to JFK neuro science center hospital and saw a renowned Neuroctologist who deals with dizziness and balance disorders and was diagnosed with CRONIC SUBJECTIVE DIZZINESS. It is mostly misdiagnosed by all ENT's. This condition is treatable with meds but you will have to let the Doctor try different medications. It's not perfect but I do get relief. There are still bad days but I can function. Find yourself a doctor who deals in CSD. Most ENTs are just good for ear infections and what they can see. This is not vistibular migraines, believe me, I have seen enough doctors. I to had to retire and felt the same way you do but dont give up and find youself a good Dr who knows about this condition and you will get results. Good luck.

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@jenniferhunter

@natvlk I would recommend seeing a spine specialist and/or a physical therapist who has knowledge of rehabbing spine issues. When you get neck muscles spasms it can move your cervical vertebrae around which can cause dizziness. There are some spine issues that alter blood supply in the vertebral artery like Bow Hunter's syndrome. If you feel like you've eliminated other possibilities and no one knows, it could be a physical alignment problem that physical therapy may help. I am a spine surgery patient and have had muscle spasms cause dizziness.

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That is a good thought, although the feeling I am experiencing is more lightheadedness than vertigo dizziness (the two are so hard to tell apart, but the room is not spinning for me, more of a weird fog sensation that my head is moving and my vision is blurry almost 24/7). I also get pressure on my face near my sinuses (why I went to the ENT in the first place), sometimes I get headaches but not always. I have also had no relief from the feeling for 5 months. I will look in to physical therapy though to see if it would be something that would help. Thank you!

Liked by Jennifer Hunter

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@natvlk

Hi all,
I am 19 year old female and I have experienced chronic lightheadedness/dizziness nonstop for the past 5 months. I have had these dizzy spells in the past for a course of two years, but usually they would last a few weeks or go away with steroids given to me by my ENT. I have also been experiencing blurred vision and numbness/tingling in my left arm and leg. When I saw an ENT prior to this spell he gave me the steroids because he believed it was sinus congestion and inflammation. However, during the past 5 months nothing has helped this feeling. I went back to my ENT and he told me to see a neurologist. Neurologist was reluctant to give me tests because I am "young" but he agreed to because of the numbness i was experiencing. My MRI, MRA, and bloodwork all came back perfectly normal. The neurologist told me to see a counselor, as he thought it was anxiety/stress. I started seeing a therapist and psychiatric nurse whom have helped me emotionally a bit but I was still feeling sick so I went to my PCP and asked what do I do now. She had me see a specialist ENT and neurologist at Yale hospital both who told me I am most likely experiencing vestibular migraines. I was given an antidepressant, and two supplements to take and was also told to change my diet (very difficult for me to do because I am already on a strict diet for interstitial cystitis). I am still concerned because I don't know if anything is going to work. I asked if i could have a steroid and i was told no. I am having a hard time focussing on school and work and it is very stressful for someone as young as me to deal with.

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Hey, i’m 21 and this sounds exactly like what I have been going through the last two months. I had had recurreent dizzy spells before (like over the the past year) and went to an ENT and they figured it was just from anxiety. I tried to ignore it, but now I have been lightheaded and dizzy every day for the past two months. Its like my vision is constantly blurry and grainy but gets worse when i stand up. i also have random numbness in my right arm and leg. Sometimes numbness in the back of my head and neck. My doctor thought it was just from muscle spasms in my neck so I started to see a PT for the past few weeks. I went to a neurologist and all my MRIs and spinal tap came back normal. They still can’t find the main reason why i am feeling dizzy which is so frustrating. Finishing school with this is getting tough. I got a nerve block in my neck muscles and was prescribed meclizine, setraline and topamax. I am hoping with all of that and PT i may start to fee normal again. I also started allergy medicine daily as I have heard that helps. Anyways you are not alone in this problem! What dietary changes did they suggest? @natvlk

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@ssss10

Hey, i’m 21 and this sounds exactly like what I have been going through the last two months. I had had recurreent dizzy spells before (like over the the past year) and went to an ENT and they figured it was just from anxiety. I tried to ignore it, but now I have been lightheaded and dizzy every day for the past two months. Its like my vision is constantly blurry and grainy but gets worse when i stand up. i also have random numbness in my right arm and leg. Sometimes numbness in the back of my head and neck. My doctor thought it was just from muscle spasms in my neck so I started to see a PT for the past few weeks. I went to a neurologist and all my MRIs and spinal tap came back normal. They still can’t find the main reason why i am feeling dizzy which is so frustrating. Finishing school with this is getting tough. I got a nerve block in my neck muscles and was prescribed meclizine, setraline and topamax. I am hoping with all of that and PT i may start to fee normal again. I also started allergy medicine daily as I have heard that helps. Anyways you are not alone in this problem! What dietary changes did they suggest? @natvlk

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@ssss10 If you have constant neck muscle spasms, it can be caused by thoracic outlet syndrome which I do have. I also had a bad cervical disc and had spine surgery for that. With one side of my neck being chronically tighter, it can start turning and shifting vertebrae causing a misalignment. When that happens, and if bad enough, it can cause vertigo and nausea, and bad muscular headaches. If you also have some arm symptoms, you might consider seeing a specialist for TOS. You have to find them at places that treat TOS like Mayo, and a lot of doctors don't understand it. Physical therapy helps. https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

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hi!!
I am Eliza 36 f, I'm going for 3 years of dizziness..I am just like u!! they can't find anything but I only don't feel dizzy in bed resting, driving, working out, but the rest washing dishes, showering, working, or in public o feel like passing out. what is wrong with is??! I made another doctor appointment for February to check more…I been 12 years on antidepressants and antipsychotics so my husband thinks is that I don't think so

so I wish you the best glad to find you!!
I also had a lot of ringing in my ears that went away….

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@redhead63

Hi:
I know how you feel I have been lightheaded since 2013 and was convince that it was my right ear. I just discovered that I have an Enlargement of my right atrium and right ventricle thickened of my aorta valve thickened of my mitral valve. I also found out that I have Advanced Degenerative arthritis in the Cervical Spine and Subluxation in the Cervical Spine and not one freken Doctor told me any of this. You have to be your own advocate. Don’t give up. Get all of your records and Doctor’s notes and do your own research.

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hi redhead
I feel glad you finally found something out…how old are you, if you don't mind…I been dizzy 3 years now

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I have these types of migraines. The effect can last more than just during the migraine because it overwhelms your balance center. It is sort of like a migraine hang over. They can happen often enough that your body cannot fully return to normal befire the next one occurs. You may have other issues that compound with the migraines. I have Chronic Subjective Dizziness coupled with my Vestibluar migraines and it makes me "dizzy" for hours…days…weeks…months…and even years at a time. I went to Mayo Clinic and had it diagnosed. I use a combination of medication, suppliments, exercise, talk therapy, and some less convential methids to strengthen my tolerance to the dizzy. I also work to prevent triggers from causing more acute attacks. It is a life long challenge for me going on 8yrs now. Be open minded. Our brains are very powerful and very delicate. Keep Looking for answers but be willing to really hear what doctors find in medical evidence. Not all cases of any one medical issue have the exact same symptoms. Take Care Hang In There!

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@urdream05

hi!!
I am Eliza 36 f, I'm going for 3 years of dizziness..I am just like u!! they can't find anything but I only don't feel dizzy in bed resting, driving, working out, but the rest washing dishes, showering, working, or in public o feel like passing out. what is wrong with is??! I made another doctor appointment for February to check more…I been 12 years on antidepressants and antipsychotics so my husband thinks is that I don't think so

so I wish you the best glad to find you!!
I also had a lot of ringing in my ears that went away….

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@urdream05 Hi I have tinnitus in my ears it's a ringing or humming I became dizzy and fell a couple of times my ear Dr is sending me for a special ear test Appt tomorrow best wishes

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@lioness

@urdream05 Hi I have tinnitus in my ears it's a ringing or humming I became dizzy and fell a couple of times my ear Dr is sending me for a special ear test Appt tomorrow best wishes

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@udreams05 After my 2gr8 testing Dr said it's nerve damage in my inner ear I had the dizziness and balance problems but the ear exercises he gave me to do still cause dizziness but he said this will improve as I keep them up Hope you found something to help you The rest I had was 2 hrs in length

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