dizziness severe for 16mths

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hi folks been dizzy now for 16 mths its ruined my life my relationshihip lost my job and stil none the wiser of what really is wrong with me been on stemetil amtrptilene nortriptilene serc pitzofen now topamaz the consultant im seeing now is saying im suffering with silent migraine and a chemical imbalance in my brain have any1 heard of these im at the end of my tether cant live like this anymore

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  • Posted

    Hi Alison, so sorry to hear all that.  Ive got silent migraine too but luckily Ive managed to just get by with it all.  Had all those meds none of which helped at all so now Im flying solo.  I believe its caused by inflammed blood vessels in the brain stem hencing giving you dizziness and a whole other load of weird head side effects.  The worst part is the not knowing, I had panic attacks and all sorts before I knew what it was even then I didnt believe it,  Its only since being on here and on MAV on facebook that I agree with it.  Once the anxiety calms down it does get better.  Im still dizzy part of every single day but my jumpy eyes have stopped and a lot of the other stuff has calmed down.
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    • Posted

      I'm dizzy everyday too....I've been told inner ear issue but I haven't doubts. With silent migraines u get no pain right? And canbu be dizzy everyday for a year? Like I've been. It's so frustrating! I have noticed that I get anxiety but its improving. I also notice advil helps me as well but not completely
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    • Posted

      Hi Tasha, I only know about silent migraine dont know about any other ear conditions.  Ive been dizzy every day now for over three years.  My symptoms are the constant dizziness which I hate and is more or less always there except when I lie down on my side with my neck supported and then Im not dizzy at all.  Dont know why.  But the rest of the time I have symptoms that come and go all day everyday which are  pain in ears, pain in head, back of head, nose, cheek, jaw, pins and needles on top of head and a weird feeling if I touch my face or head anywhere. Plus the occasional giant headache ie classical migraine.  The more anxious I get the worse it gets.  In fact it starts the second I get het up.  Plus I have bad sinuses which I thought were just sinuses but apparently its all part of the silent migraine stuff.  I have a lot of allergies too - perennial rhinitis. Its all good fun.  Ive been tested and I dont have BPPV but when this started they thought I had labyrinthitis which over time proved I dont. Mine started when I came off HRT plus the last member of my family died.  I sobbed none stop for a full week and this started. 
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    • Posted

      Hi Tasha, I have taken all sorts of stuff but couldnt tolerate any of it or it didnt work at all. Not on any meds at all now.  I have been to the migraine clinic in london and had botox.  That seemed to stop my jumpy eyes.  Im seeing my neuro this week and I dont think I will go back on any drugs.  I seem to be improving on my own.  I still want botox though as it will give my trigeminal nerve a rest and you never know, the dizziness might just stop.  Can deal with the headaches and pain its the dizziness that drives me round the bend.  I have found the more I do, the more I can do so cleaned the house today.  Wasnt dizzy till I stopped.  How bizarre.  Hope youre feeling a bit better.
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  • Posted

    Sorry to hear that you still have problems.  I am in my 19th month but, I have seen improvement from when this first started.  I am actually about 95% to 98% recovered.  How did your's begin?  I assume that you have had all of the tests, MRI, ENG, blood work, etc.  Have you done vestibular rehabilitation therapy?  Did you have an early diagnosis? 
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  • Posted

    Sorry this note book  is nuts, the post just posted itself !!  Ive had this now for three years and the worst thing you can do is worry.  Its nothing serious or life threatening but is very debilitating.  Ive lost my social life because I cant stand fluorescent lights or moving about.  I have to accept Im destined at the moment to just watch telly but as I say it has improved.  I dont know how to get it to stop, I only wish I did.  The MAV (migraine associated vertigo) site on facebook is another good place to go.  Theres lots of us in the same position, its far more common than anyone realises.  Plus its hard to get sympathy because theres nothing to see.  Do lots of research and follow the diets etc to try and help yourself, but above all, dont worry, its nothing serious.  If you feel low, just come on here and we're all here to listen.  Best wishes Paula
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  • Posted

    Good book that I am reading sheds a lot of light on our struggles.  While the author's story is one from an injury causing a concussion it resonates with a lot of the things that we deal with.  Doctors not understanding and just writing our symptoms off and the recovery process of the brain relearning from a vestibular injury.  I recommend it: The Ghost in My Brain. 
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    • Posted

      Thanks for suggesting that book, I will read it. A book Im reading now is The Neck Connection (suggested by users in this forum). Great book so far. Describes how impaired blood flow to the subconscious brain can cause numerous symptoms like headache, dizziness, fainting, poor immune system, hormonal imbalances, emotional problems, etc. Really a good book for anyone to read. Great analogies used, making it an easy read.
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  • Posted

    Hello. Omg thats crazy 16 months with vertigo, well if you tried everything (which i think you did). What I would suggest is go see fortune teller( i dont know if thats the right word, my english is not perfect, its someone with "powers" that can see future, past and other things) Ofcourse if you believe in these things, and would be good if you know someone good with these "powers". Thats just my advice, if nothing else has helped. I didnt believe in these things either, but when i saw it on my close friend, it really works wonders.

    Im have vertigo for 16 days now, I cant no more tell im getting better or getting worse with each day, i feel like im going crazy, its so hard..

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    • Posted

      Hi Alvis, I dont think I would like to see a fortune teller, if someone had told me I would have vertigo for over three years, I think I would have given up.  I spend each day hoping it will go, if you tell me Ive got another three years to suffer I would rather not know !!!
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    • Posted

      I didnt think like that, like I mean maybe someone has "cursed" you, if so fortune teller will help you with that. But like i said if you dont believe these things, well then I dont know what else to do. Im just tryng to help
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    • Posted

      Hi Alvis,

      I've often wondered that too, but I'm like Paula, afraid of what they would tell me. If they are wrong, they could turn your whole world upside down, even worse than it is now! I have a friend that is a medium and I have seen her work and it does blow my mind but I would stop short of asking her. If I recall, I don't even think she is comfortable stating what she sees/feels with regards to someone's health as it truly can be life altering. I am thinking more along the lines of a spiritual healer, mind to body connection. There are a couple of Native Indian communities in my area and I may just look in to that area. Thanks for posting that Alvis.

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    • Posted

      Hi Marie.

      Yeah I know, thats why need someone you know who is good with these things. Still would be a bit scary what they would say.

      About spiritual healer, mind to body connection is nice idea.

      How are you doing/feeling now?

      This dizziness is horrible, cant do almost anything, watch TV little bit, walk, eat, but the worst thing not knowing whats wrong with me, these thoughts are all time in my head, wondering.

      Had MRI neck scan today, after 3 days will be results, if it will be okay, then i will do head MRI i think, i had CT head scan but i think its not enough.

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    • Posted

      Hi Alvis,

      Thanks for asking how I am doing. Today I had bad headache because I ran out of my pills for it and Tylenol just doesnt work for me. All in all, dizzyness still a big issue for me, still cant work, try to walk outside but not for long. I can understand how you are feeling, it mirrors what I am doing to and very frustrating. Had my head mri yesterday so it will take 1 week for results although I'm not holding my breath for that. I think they should have performed a neck mri as well but they said my CT scan for head was quite thorough and normal so no need to but I beg to differ. Trying to get MRIs here are a big deal and a loooong wait.

      Let me know how it goes with your MRI, hope it goes well. Take care Alvis smile

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    • Posted

      I had one time very bad headache, but now just some times when it comes and goes not so bad, but dizziness well yeah is the worst.

      Its same here if, I would wait it will take until February, just ridiculous, but for money i can get MRI today, tomorrow or when I want and ofcourse its pretty expensive, but I see no other options.

      I will post how im doing and the results.

      Let me know how it goes for you too smile

      Stay strong!

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    • Posted

      Hi Marie

      Today got my MRI results, ofcourse all is good there.

      My dizziness got worse, now its spinning more then before, its soo hard. But head pressure got bit better.... Noone tells me what to do next, that neurologist didnt say why I have this dizziness, she thinks its from anxiety, thats just ridiculous.....

      The only thing next im thinking head MRI scan and maybe inner ear

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    • Posted

      Hi Alvis,

      I'm really sorry to read about how you are feeling. Did you have balance tests done? Yes, doctors are so quick to point out anxiety when they have no other answer. Try to focus on the good, your head pressure got a bit better and that might be a sign of things improving. No doubt, you will have the good days and bad days and that is what makes it sooo frustrating for us. I am trying to keep a positive mind and refusing to let this thing beat me. I am waiting to hear about my MRI of head, hopefully by tomorrow but like you, I am thinking that it will be fine. I guess that's good and bad. Good, as in something not sinister going on in you but also bad, because you (and quite possibly I) feel like we are back at square 1. 

      My family dr called me yesterday to say that my hemoglobin count was low and I normally have blood pressure that is borderline low, this could be accounting for some of the dizziness. How is your blood pressure and have you had a complete blood count (CBC) test? Ask your dr about a head MRI to alleviate any worry.

      Please take care and try not to get too depressed about all this. We will work through this smile

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    • Posted

      Its nice to hear from you smile.

      Neurologist did some balance tests, i guess they were ok, well she didnt anything about them. Like stand feet close together, point one finger to nose, then other, things like that.

      My symptoms are changing, its weird, i had all sorts of them, headaches, feeling sick, a little temperature, weeknes in body, then pain in my left ribcage(now it is gone). Sometimes like hard to breathe, ringing in ears.. All these things come and go.

      Do you feel any of these?

      Yeah and its weird why there are "good" and "bad" days, but they are..

      Its same for me, im tryng to stay positive and calm, i dont know why, but going in shower kinda relaxes me, weird i know.

      Thats the worst not knowing what we have, because if we knew then, would know how long, what pills to take and what to do.. Its good I did MRI neck, because i wanted to go to physiotherapist that it absolutely not nedded.

      I had some blood test at hospital, they said its all good. I check my blood pressure all time, write 2times in morning and night, showed that to doctor, she said all is fine there, did hearth arrhythmia too, all good. Who should I ask about cbc test?

      Yeah head MRI is nedded to stop thinking about all crazy things that maybe have.

      I think your MRI will be good, because if they see something "crazy", they would immediately contact you.

      Still let me know the results and what are you thinking to do next?

      Yeah, we will get through this smile

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    • Posted

      Hi Alvis,

      funny (well, not really) that you mentioned all those symptoms because today, I was all over the place with the exact same things you were describing. In fact, I also started feeling my ears full with some pain. I haven't felt my ears full since last July so that made me upset because I thought I was well over that.

      MRI for head came back normal.

      Re: the CBC, in all likelihood, you probably had this test while in the hospital.  Your family dr should be able to tell you, he/she should have received a copy of the hospital's report. A CBC is a blood test used to evaluate a broad range of disorders. 

      I don't know what to do next. I am kind of lost at this point in time. I will follow-up with a subsequent blood test in a month to see if my hemaglobin levels have dropped further. Until then, I will keep reading and fighting this darn thing.

      There are facilities that you can be referred to that test for hearing, dizziness and balance disorders. The tests take about 2 hours. Check with your family doctor, ENT dr or your neurologist.

      Take care Alvis, keep me updated smile

       

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    • Posted

      Hmm thats strange, what could we have I have no idea. Well thats nice, i want to do head mri too. Today called neurologist said that mri was fine, i asked what to do next, what I have, she thinks its from anxiety/stress, i was so mad, all she can say.... I asked i want to do head mri, she answered there is no rush, wait month then call her..... I will go to other neurologist, that can actually help. I have visit to very good neurologist, but its only in december, thats sooo long time.

      Yeah I had that cbc test, all is good there.

      Today was in stores with my mom, everything was spinning, I thought i will fall, but didnt, just very strange feeling, cant even think of nothing else, just this dizziness.

      Hmm i dont know if I have those kind of tests here in my country, need to do some research.

      The next i want head mri, go to check my eyes. Another thing im thinking maybe its from my wisdom teeth, 3 of them are growing right now, kinda wrong, i can feel that, but i dont think teeth can cause dizziness and pressure in head.

      What other things you did, what tests, what your neurologist said what it is? How long your dizzy? How it started?

      I will post how im doing.

      Stay strong smile

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    • Posted

      Hi Alvis,

      yes definitely get your eyes checked. I did, surprisingly my eyes were getting better and didn't need a stronger prescription so that helped a bit. 

      Personally, I don't think the wisdom teeth would cause that unless perhaps you had a major infection due to the wisdom teeth but I'm not a dentist, so I'm not the best one to comment on that.

      I've been dizzy since mid-July of this year. Started with tension headaches/migraines in beginning of July, then the ears feeling full, then the dizzyness/vertigo. Im on Atriptyline, 10 mg, at bedtime now for headaches and it has alleviated the pain. Dizzyness is not as bad as before as now I can get out for a bit to walk, not long, but better than before. Stores are brutal for me. The lighting sets me off. First I feel squeezing between the eyes, and then the balance goes, lightheaded and if I stay long enough in that store, I feel like I am going to pass out and then I get my headache. I will be going to family dr this Monday as she called me in to say I have a low hemaglobin count which definitely can be causing the dizziness. Do I have anemia? Not sure, I will be having another bloodtest in a month to check levels. For now, I am increasing my iron levels through supplements and iron rich foods. 

      Yes, please keep us posted on how you are doing. And you stay strong too. I'm glad your mother is there for you too. biggrin

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    • Posted

      I havent checked my eyes for some time now, i want to check them, because my eye pupils are very small, and then after some time become very big( in hospital they said to me you got very big eye pupils, they thought maybe im on drugs or something which im not) that kinda made me want to check them, oh and I have to wear glasses, because of vision.

      Almost same as me, but only i dont get headache, in store i had the feeling like I would pass out.

      Thats just terrible so long with dizziness, Im dizzy now about 4 weeks, but before this I had dizzy spells about 4 months that got worse.

      Now I have new symptom, but I dont why it happens in night, i get that ringing in ears feeling and fullness, this all is weird and scary in same time.

      I will go to family dr tuesday, need to ask her what she thinks and maybe she knows some good neurologist that can actually help.

      Oh and I forgot to mention I cant long time sit to pc or watch tv, i get very dizzy then.

      My mother is very, very helpful smile

      Its nice to have someone who understands how im feeling, can share thoughts and help each other smile

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    • Posted

      Your enlarged pupils could be considered mydriatic pupils and it could be perfectly normal for you but your optometrist will be able to confirm that.

      Alvis, try not to worry about this. Stress as you know will only make your symptoms worse. It could be an inner ear issue that will come and go, resolve on its own. Many people do not have another episode for years or ever, some have it from time to time and then to totally disappear. As long as you get checked out by your family dr, eye dr, neurologist & ruled out for any serious issues, that's important and will give you some peace of mind. Ask them to refer you to a  balance test centre. I would think most cities have them. Take it one step at a time, don't stress too much. 

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    • Posted

      Maybe yeah, I will go check my eyes, then see.

      Im tryng as much as I can, and doing all. Well I hope it one day will just go away.

      I will ask about balance test.

      But it started when i fell on ground and hurt my head, since then all the dizzy spells started, before that i was feeling good, maybe that could be the reason or just coincidence.

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    • Posted

      Hi Alvis,

      oohhh, I didn't know you fell and hit your head. Then you should be having a MRI done of your head if you are experiencing dizziness associated with a fall. Definitely get that checked out. My son plays hockey and was hit hard, suffered a concussion and that was the first thing they did was a MRI of head. He is still not 100% and experiences headaches so a hit to the head is definitely something to take seriously. Let us know. Take care Alvis, hope you are feeling better real soon.

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    • Posted

      Hi Marie

      I didnt have concussion I think, because there was no vomiting and no memory loss, but the next day my head hurted real bad, the next day went to work and felt like sick and some dizzy spells. I went to family doctor, she said sit at home, so I did for some time.

      Then the dizzy spells came and go, for 4 months like that and then it started 24/7 with head pressure.

      Well at hospital they did CT scan, it was all good there. But I will definitely do head MRI, just to be sure.

      You too take care, and let me know how your doing smile

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    • Posted

      Hi Alvis,

      I hope you didn't have a concussion but you should know that to not be vomiting is not a sign that you didn't have a mild one. I've had a concussion when i was younger, I was unconscious but no vomiting. When my son was hit, he was stunned & was stumbling to get to the bench, but did not lose consciousness and no vomiting. You don't have to pass out to have a concussion. We both felt after effects, severe headaches and dizzyness.  Every brain injury is different as is recovery time. I don't know when you experienced the fall or if you felt these symptoms immediately or soon after the fall but I would think your family doctor would have taken the appropriate measures if he/she suspected a concussion. If not, talk to your dr about it. Symptoms can last for hours, days, weeks or months depending on severity. 

      Hope you are feeling better soon Alvis biggrin

       

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    • Posted

      Hi Marie

      I felt in june, and then the dizzy spells started, but had no pressure in head feeling until i got dizzy 24/7, then all sudden i felt such pressure in head, that was scary.

      Now i got new symptom again... i feel like there is something in my throat like something stuck there, weird felling, it gets worse when I walk.

      Well and I still dont know if dizziness is from fall or no, nobody says anything.

      Tomorrow I will go to another neurologist, I hope she will say whats wrong with me and what to do and not talk about anxiety again like the last one. After that I will see my family dr.

      I will post tomorrow what they will tell me.

      And how your doing/felling, something new?

      Thanks, I hope your felling better too smile

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    • Posted

      Hi Alvis,

      Oh good, I am glad you are seeing a neurologist for another opinion. 

      Hopefully your new symptom of throat irritation is nothing. Maybe allergies, or something u swallowed irritated lining? Wierd thing is when we are feeling this way, we seem to be more sensitive/aware of any new aches/pains with our body which we may have ignored in the past. Try not to stress out too much, it may be here today and gone tomorrow kind of thing. 

      For me, nothing new, just trying to go out for more walks. I am finding that watching sports on tv is helping me with my dizzyness and vision issues. In the beginning I couldnt make it through 15 minutes of watching a game but now I can watch the whole game without getting really dizzy and a headache. I think fast-paced, back and forth movements helped. Not sure if you like sports, you may want to try.

      Good luck tomorrow, let me know what neurologist says. biggrin

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    • Posted

      Hi Marrie

      I can say this neurologist was much better then that who told anxiety and talked about my life, not problem. She read all tests i did, she was suprised how many i already did, and what she told me is, my brain could be damaged and this all dizziness is caused by that fall, and i told her about mri, she said its not necessary.

      So she wrote me injections, for 30 days, they are injected in buttock.

      And today had first injection, i could feel some improvements, my head pressure is 70% better and dizziness got bit better, good feeling smile. Plus im on Betaserc 24mg im taking it for month, she told the real effect of it will be after 2 month ussage.

      And my family dr adviced to try needlle therapy, she thinks it might help.

      So I really hope after 30 days the dizziness will be gone.

      I dont really like sports, but sometimes when i feel bit better, i watch some movie.

      Oh and that throat thing could be from my medical head holder, because i used it about week all day, but its only needed 3h per day, so that could be the reason. And about sensitivity yeah, i feel every pain or anything in my body and then i think omg new symptom what could this be?!

      Have you tried any therapys? Like needlle or something?

      I hope you will feel better soon smile

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    • Posted

      Hi Alvis,

      So happy to hear that you have found a neurologist that you are happy with, that actually listens to you. Sounds promising what she told you, so let's cross our fingers it works. 

      I am trying now a nerve block injection to the head, 2 spots, to help ease the pain. Yesterday, I asked my family dr about it and she said it is absolutely safe and alot of people get relief from those injections. It is a local anesthetic that is injected into the head to help alleviate the pain and relax muscles. The first injection usually works for a short time, a few days, and muscles tend to get tight again so for this to work, it usually takes several sessions for relief to take hold. So I, like you, am hopeful this will put an end to this suffering. We will keep each other updated. What is the drug that they are injecting in you? I would think maybe along the same lines. I was so excited in the office about it, that I forgot to write the exact name of the drug.

      Thank you for well wishes and I wish for you too, good health very soon so you can enjoy your life biggrin

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    • Posted

      I really hope it works.

      So we are both doing injections, kinda couisidence :D. Hmm I havent heard about head injections, hope it works for you.

      The drug is called Cerebrolysina, its used if had head trauma, or concussion and some other things.

      Yeah we will keep updated how things go and how we feel smile.

      But I still have that neck feeling, I hope it goes away soon.

      All this dizziness is lesson for me, to change things in my life and how i think about everything, that i was sad for things that are completely meaningless.

      Are you having this too, like changing something in your life and making it better?

      Thank you too, we will both get healthy and enjoy life smile

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    • Posted

      Hello....I was reading your post and had to reply. I too experience severe dizziness everyday for almost 2 years now. I went to an ENT Dr as well as had an MRI done on my brain and all was fine. Had blood work done at hospital about a month ago and all was good there and was diagnosed with anxiety. I thought for the longest something was seriously wrong with me health wise cause of all the symptons I was having especially the dizziness. I was given xanax to treat the attacks when I have them and also put on Zoloft which takes about 6-8 weeks to take affect and start working. I hope things are better with you. Take care.
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    • Posted

      Hello, these all symptoms are weird, i dont think anxiety have something to do with this, well because before i wasnt very anxious or anything like that, when the dizziness started 24/7 well yeah now i am more worried and stressed, but still i dont think its anxiety...

      How are you feeling now? Are you getting better?

      Im feeling little bit better then before.

      You take care too.

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    • Posted

      i agree alvis i dont think its anxiety either cos i can be really relaxed but the diziness dont leave me its left me virtually housebound i hate it i use to be a very active person
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    • Posted

      Hi - thats ridiculous thats its anxiety.  Ive been dizzy 24/7 now for over three years.  I finally got my diagnosis after almost a year of silent migraine. Initially my GP said it was anxiety - they are useless.  I now have two neurologists and am due to have botox.  ive tried about 9 diff medications and nothing stops the dizzies.  I am also very light phobic and sound phobic.  Ask to see a neuro.
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    • Posted

      I have seen a neurologist and had an MRI done and asked about silent migraine but tests was clear and said I don't have silent migraines nor is there anything wrong with my ears cause have been to an ENT as well. I was diagnosed with anxiety by 2 different doctors so its not rediculous at all I have all the symptons of anxiety .
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