As I watch this I feel like I’m falling apart. I have a loving family and set of friends but they are far away from knowing how I now experience the world. I’m 16 months in with very little medical support. It’s a very lonely life right now. Last year I spent 9 months alone in my room in the dark. I had intermittent respite from but would relapse. Just hearing you articulate this is choking me up. I miss being me.
I can relate to everything that you are saying! Asthma as a child, severe allergies, acoustic neuroma, and mennigioma as an adult! Can't wait to read your book. Love your discussion! Healing and the new normal.
So true about smiling and pretending everything is ok! I have had vertigo constantly for fourteen months. Everything you are saying rings true with me. Thank you.
I'm sorry to hear about your vertigo. Feel free to contact VeDA directly if we can be of assistance by sending you related articles and referrals to vestibular specialists. (info@vestibular.org)
In my understanding there's so many issues of cause to vestibular issues. From Meniere's, damaged vestibular nerve, tumors, certain medications, hearing loss, ear wax build up, water in ear, exposed to loud noise, Multiple Sclerosis, autoimmune diseases, (I'd seen a doctor speak on the affects Hashimotos- autoimmune disease that attacks thyroid gland can affect the Celleberum in the brain), smoking, alcohol, caffeine, bone issue in the ear, high blood pressure, hormonal imbalance, Anemia, PPPD, Migraines, deficient in B12, certain brain lesions in Dorsal Pons or Celleberum, neck issues. I've had a 24/7 floating in my head for 3 year's, am suffering terribly, than in August of 2020 Tinnitus started, with those symptoms my head feels heavy all the time, (from that I've developed severe neck tension from trying to compensate), have chronic severe fatigue, debilitating anxiety, tingling in feet, right leg spasms sometimes and feels heavy, in past 3 months began developing mild headaches which I've never been one to have headaches in my 54 year's. Went to Neurologist in 2018, had a MRI and two small white matter lesions were found, he stated my symptoms are not from that and the lesions are not MS, ( Multiple Sclerosis) related. Had Vestibular tests conducted which were normal. I'd been to a Audiologist, tests conducted and only finding was high frequency is slightly affected which is normal for aging. Been to a Cardiologist, a series of tests were done, A1C and all normal. Had extensive blood tests, vitamin B12, and D and which D was kind of low. ANA Antibody tests, which returned a soft positive with a Titer Value of 1:40 so more extensive antibody tests were done and they were all normal. "Only" thing I haven't had checked yet is "cortisol levels" which I'm sure is off from the anxiety in trying cope with this. In addition need hormone levels checked. In 1993, had a full hysterectomy, was placed on HRT, than in 2017 had to stop taking it and that's when I noticed a couple months later the 24/7 floating began. In 1993 diagnosed with Hypothyroidism, had a partial thyrectomy due to a "benign" tumor, was placed on thyroid medication, however although there were times needing adjustments in medication I'd only slightly had vestibular issues during that time but never "constant" as when I stopped the HRT replacement. I'm not looking for a diagnosis online but telling my story as someone may have a similar story also looking for answers. Thank you for letting me share and I thank you from the bottom of my heart to all those helping others. My heart goes out to those suffering. Much love and sympathies to you.
I'm sorry to hear about what you have gone through. There are many causes of dizziness, some of which are vestibular (and, as you pointed out, many different types of vestibular dysfunction). It's also possible to have more than one thing going on at the same time. It sounds like you are in capable medical hands. You may be interested in joining the Vestibular Disorders Support Group on Facebook to share with others who are also struggling and see if any of their stories ring true for you. facebook.com/groups/894515707291390
I also had a hysterectomy and put on hrt but couldn't tolerate it and noticed the start of vestibular issues which went away on their own. Two years later however I'm suspected PPPD, I have hashimotos and total thyroidectomy and past history of menieres. I definitely think there's a link. Thankyou for sharing
I suppose the essential thing to always mention in these situations is that is that PPPD and PPV are linked to anxiety & depression so it's important always to address that. Your situation with the allergies would take a lot of honest self compassion to purge the unfounded shame. Fear is a big problem these days as we are not encouraged to find faith but I think an endemic issue is self-hate related to divorce and the assumption by the child that they are unworthy. Once they gain the realisation that the parent who left did love them our western shunning of emotion stops us purging the self-hate demon. Anyway, if it ever is a childhood issue compassion is the key to freedom, but your suffering does not mean you've wasted your life - it's the most valuable experiences, albeit unpleasant.
So if you're vestibular nerve is damaged and your anxious because of the vertigo you aren't necessarily an anxious person No meds work no diet changes work What to do !?
Joanne - everyone is different, so there isn't a one-size fits all solution, and sometimes it's a trial and error process with your healthcare provider to find a treatment that works for you. You might also check out Joey's website at www.seekingbalance.com.au/ for more information on her Rock Steady program, which uses neuroplasticity to rewire the brain and change your response to your anxiety.
I wish i can talkto some one about how feel and how my vestibular episodes start. Sometime its very bad and i feel like dyiing. I cant do nothing and just lay down. All the spinning and noise in my ears and head. Im very warm and wish im dying on that moment. I cant do nothing untill the noice in my head is still. Then im cold and feel terrible. Thats so hard to explain how i feel and what going on.
Thank you both for this honest and informative exchange, healing balm but also a call to arms. So grateful x
As I watch this I feel like I’m falling apart. I have a loving family and set of friends but they are far away from knowing how I now experience the world. I’m 16 months in with very little medical support. It’s a very lonely life right now. Last year I spent 9 months alone in my room in the dark. I had intermittent respite from but would relapse. Just hearing you articulate this is choking me up. I miss being me.
I can relate to everything that you are saying! Asthma as a child, severe allergies, acoustic neuroma, and mennigioma as an adult! Can't wait to read your book. Love your discussion! Healing and the new normal.
So true about smiling and pretending everything is ok! I have had vertigo constantly for fourteen months. Everything you are saying rings true with me. Thank you.
I'm sorry to hear about your vertigo. Feel free to contact VeDA directly if we can be of assistance by sending you related articles and referrals to vestibular specialists. (info@vestibular.org)
Do you still have it , it’s been over 3 months for me
In my understanding there's so many issues of cause to vestibular issues. From Meniere's, damaged vestibular nerve, tumors, certain medications, hearing loss, ear wax build up, water in ear, exposed to loud noise, Multiple Sclerosis, autoimmune diseases, (I'd seen a doctor speak on the affects Hashimotos- autoimmune disease that attacks thyroid gland can affect the Celleberum in the brain), smoking, alcohol, caffeine, bone issue in the ear, high blood pressure, hormonal imbalance, Anemia, PPPD, Migraines, deficient in B12, certain brain lesions in Dorsal Pons or Celleberum, neck issues.
I've had a 24/7 floating in my head for 3 year's, am suffering terribly, than in August of 2020 Tinnitus started, with those symptoms my head feels heavy all the time, (from that I've developed severe neck tension from trying to compensate), have chronic severe fatigue, debilitating anxiety, tingling in feet, right leg spasms sometimes and feels heavy, in past 3 months began developing mild headaches which I've never been one to have headaches in my 54 year's.
Went to Neurologist in 2018, had a MRI and two small white matter lesions were found, he stated my symptoms are not from that and the lesions are not MS, ( Multiple Sclerosis) related. Had Vestibular tests conducted which were normal. I'd been to a Audiologist, tests conducted and only finding was high frequency is slightly affected which is normal for aging. Been to a Cardiologist, a series of tests were done, A1C and all normal. Had extensive blood tests, vitamin B12, and D and which D was kind of low. ANA Antibody tests, which returned a soft positive with a Titer Value of 1:40 so more extensive antibody tests were done and they were all normal. "Only" thing I haven't had checked yet is "cortisol levels" which I'm sure is off from the anxiety in trying cope with this. In addition need hormone levels checked.
In 1993, had a full hysterectomy, was placed on HRT, than in 2017 had to stop taking it and that's when I noticed a couple months later the 24/7 floating began.
In 1993 diagnosed with Hypothyroidism, had a partial thyrectomy due to a "benign" tumor, was placed on thyroid medication, however although there were times needing adjustments in medication I'd only slightly had vestibular issues during that time but never "constant" as when I stopped the HRT replacement.
I'm not looking for a diagnosis online but telling my story as someone may have a similar story also looking for answers.
Thank you for letting me share and I thank you from the bottom of my heart to all those helping others. My heart goes out to those suffering. Much love and sympathies to you.
I'm sorry to hear about what you have gone through. There are many causes of dizziness, some of which are vestibular (and, as you pointed out, many different types of vestibular dysfunction). It's also possible to have more than one thing going on at the same time. It sounds like you are in capable medical hands. You may be interested in joining the Vestibular Disorders Support Group on Facebook to share with others who are also struggling and see if any of their stories ring true for you. facebook.com/groups/894515707291390
I also had a hysterectomy and put on hrt but couldn't tolerate it and noticed the start of vestibular issues which went away on their own.
Two years later however I'm suspected PPPD, I have hashimotos and total thyroidectomy and past history of menieres. I definitely think there's a link. Thankyou for sharing
I have had some aha moments listening to this .. thank you ...
What do you do for BPPV that has not resolved with maneuvers . I am ready to move on from the constant maneuvers
Hi could you tell me synapse xt will help tinnitus? or long term treatment with acoustic devices for make it a lot better to live with???
I suppose the essential thing to always mention in these situations is that is that PPPD and PPV are linked to anxiety & depression so it's important always to address that. Your situation with the allergies would take a lot of honest self compassion to purge the unfounded shame. Fear is a big problem these days as we are not encouraged to find faith but I think an endemic issue is self-hate related to divorce and the assumption by the child that they are unworthy. Once they gain the realisation that the parent who left did love them our western shunning of emotion stops us purging the self-hate demon. Anyway, if it ever is a childhood issue compassion is the key to freedom, but your suffering does not mean you've wasted your life - it's the most valuable experiences, albeit unpleasant.
So if you're vestibular nerve is damaged and your anxious because of the vertigo you aren't necessarily an anxious person
No meds work no diet changes work
What to do !?
Joanne - everyone is different, so there isn't a one-size fits all solution, and sometimes it's a trial and error process with your healthcare provider to find a treatment that works for you. You might also check out Joey's website at www.seekingbalance.com.au/ for more information on her Rock Steady program, which uses neuroplasticity to rewire the brain and change your response to your anxiety.
Joanne roberts how are u feeling
I wish i can talkto some one about how feel and how my vestibular episodes start. Sometime its very bad and i feel like dyiing. I cant do nothing and just lay down. All the spinning and noise in my ears and head. Im very warm and wish im dying on that moment. I cant do nothing untill the noice in my head is still. Then im cold and feel terrible. Thats so hard to explain how i feel and what going on.
Im from South Africa and 61.
I'm from the Philippines and have no money. Please help me. Please
What caused your vertigo ?