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!

I took at flight to San Francisco on September 21st and landed with a sharp pain in my back, kind of like a pinched nerve. That night I couldn’t sleep because I had numbing and tingling in my hands and feet. The next day I woke up with dizziness and a disequilibrium feeling through my body. The disequilibrium hasn’t left my body since then. I went to my doctor and she took blood tests for almost everyone but they all came back healthy. I got an MRI done and my neurologist found nothing. I went to an ENT who also said he found nothing; he then referred me to a neuro optomologist who diagnosed me with benign and reversible Vestibular Migraines. It has been really tough going through all of this. The neuro optomologist that diagnosed me told me that I would have to get some physical therapy done, which should take care of my symptoms, but after reading how this condition usually changes people’s lives, I honestly feel very hopeless. The loss of equilibrium, dizziness, brain fog, etc. is very scary to me because it happened randomly. I am having a difficult time at work and focusing in school. I really hope this PT works.

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Welcome to Connect, @smhidal1 I can imagine that this new diagnosis has you worried and asking will it get better. I like that the opthamologist said it is reversible. I found this video on Mayo Clinic https://www.mayoclinic.org/diseases-conditions/migraine-headache/multimedia/vid-20078200 Does this sound like you?

Will you be seeing a physical therapist who specializes in vestibular rehabilitation and balance issues?

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To all: Ask for a consult to a Neurotologist…..

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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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@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.

Jump to this post

Which 2 supplements?

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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.

Jump to this post

@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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@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.

Jump to this post

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!

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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.

Jump to this post

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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