Hi all

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first time posting ive been reading the board and can relate to so many of you with the head dizziness off balance and lightheaded. this may be long but just want to tell my living he** with all this. it hit me one day out of the blue everything was spinning i was holding onto walls and things to walk around this went on for a few months like that. then the spinning stopped but it never left i was having the dropping sensation and feeling like i was being pushed forward that lasted for two years like that. then it just became a constant off balance like on a boat sensation and like things move but don't. still to this day thats what im dealing with i feel pressure like a tight band around my head my vision seems off with all this its almost 4 years of this my neck has alot of tension and seems its all stemming from that but i just dont know anymore. today i bought a hand held massager decided to try to massage my neck that was a very very bad idea. i got so dizzy i thought i was gonna have to go to the ER i started panicking so bad now on top of what im already dealing with, i get spells like i did when i used the massager. im at a loss as to why this is happening to me and what the cause is. ive not really lived my life for the past 4 years im a prisoner in my own body or should i say my head. i cry everyday and pray and plead and beg for it all to stop. im afraid to try a chiropractor if it is coming from my neck scared will make it worse. i recently saw a audiologist and he says everything is fine cant find a cause for any of it. any ideas on anything that helps even if its just a small bit of help im desperate for my quality of life back.

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  • Posted

    i feel the same as you... mine comes and goes though. today is not a great day! i went to an audiologist as well they said it was fine. the ent dr said that its vestibular migraines not because he checked anything ... but because i also get ocular migraines. im at my witts end with drs and trying to find solutions. i just keep telling myself as long as im not spinning i can cope! (i do get the vertigo a few tines a year). definately not a great way to live life !!

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  • Posted

    Hi Pamela! Sorry to hear about your quality of life! I too can relate its been four years of HELL! I live with being on constant rocking boat most days to shaky. Mine came on sudden as well. I have been told many things from a virus, labyrinthitis to Vestibular Neuritis, to Vestibular Migranes to POTS and most recently encephalitis, whatever it is has been a nightmare! I use a massager as well - not much relief but hopefully it works for you. What I keep hearing about in other support groups is Physical Therapy, this is something I have not tried but I will be looking into it. I highly recommend that you go to an Internist of medicine you need to have a CT or an MRI of your brain to rule out lots of things first if you haven't had that already.

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  • Posted

    thanks for both your replies and yes its a living hell for sure hope you both find relief soon

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  • Posted

    I have not tried a lot of medications - just a few for Vestibular Migrane, I was FORCED and they didnt work. I modified my diet - no dairy, gluten or wheat and that works well for me, and minimal sugar. You have to look at the whole picture when you are sick for this long, like what you are eating, your stress levels, underlying diseases, etc. Do you live in a house with mold maybe bringing out an unknown autoimmune disease? Could you have Lyme disease? You need lots of testing. I am my own advocate I fight and beg for testing. This is strictly me but lately I think my illness is motivated on on allergies, I think my house is moldy - it seems like its some kind of chronic inflammation clearly, I take a shot of Benydryl in the AM and then some Ranatidne for my stomach and I am doing alot better. Things that took me a long time to learn about are Histamine, MCAS, (which can be connected to POTS). You need to get your b12, checked, vitamin D, full blood work up. I have low b12 as well. Another thing I did recently was the 23 and me DNA then you take the raw data and run it throught another site, kind of interesting what comes back, mther mutation, histamine, b12, folate issues. There are lots of supplements that helped too- devils claw, tumeric, Magnesium, Methyl b12, anything anti inflammatory basically. Found lots of relief with the neck and pain issues with CBD oil. Not sure if its legal where you are,

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  • Posted

    Look up pppd. I have read a lot of people with these issues have pppd.

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  • Posted

    Hi Pamela 2016,

    I suffers with the same symptoms for nearly 3 years now, I didn't have a quality on life for that time, we all here trying to help each other if any one has tried something and worked.

    I've seeing millions specialist Doctor and few months ago I've been diagnosed with chronic migraine which affected my brain and is now PPPD this condition won't show on MRI or CTSCAN as my Dr explained.

    but you have to push your self if you going to stay on close door is not going to help you, you need to go swimming a least 1 or 2 a week if you think you rocking and your body cannot do it walk in pool is very good, try to do gym 1 week, walking is very good.

    I know how you feel and you going to tell me you cannot do it. I've been there by myself so please you need family or friend to push you as with me is my kids and husband who give me a bit of courage to do it.

    last you need to see a good neurologist to start you on balance therapy which they going to teach the brain back to normal.

    therapy is not easy too it makes you more dizzy but it helps you body to adjust.

    I hope that will help you.

    best of luck

    sab

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    • Posted

      I had this once before following a stroke in 2011, My Dr recommended Betahistine 3 times a day, however they weren't enough. I still had dizziness and panic attacks. I was paranoid about falling over. He added Cinnarizine 3 a day as required. I had been alright until my BP kept going high and I was getting panic attacks again. It seems none of the medics could diagnose the problem. In fact they didn't seem to understand what I was getting. I've had Counselling, a visit to a Psychiatrist, who told me to get over it!! After waiting a year, I've been given a place on a six week group therapy session. I hope that will help.

      Since getting this I am experiencing " static" episodes, when going to medical establishments, hospital, Dr Surgery etc.

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    • Posted

      hi pamela

      you need a lot of testing. you also need to see specialists. there are doctors that specialize in this area. and they do caloric testing, MRI, blood work, audiology, the list goes on. sab is right, the worst thing for you to do is just lay in bed or on the couch and not move around. your having trouble with your brain or your brain and ear. you should do vestibular PT. there are exercises to help. you need to look up a "dizzy clinic" in your major city. look up otolaryngology and nuero-ontology. these doctors can help you. i know you feel lost and sick and confused. you need to find the motivation to try to get help. first, try taking mecclizine (bonine) its over the counter and can help with the dizzy to get you moving. i went thru same nightmare, diagnosed 3x- the 3rd was accurate, vestibular migraines. i am better now and not dizzy confused or vertigo. im on medication and have a wonderful dr who specializes in this. your regular GP- isnt going to know much, you must see the specialist to get healed.

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