Is anyone else feel like they are fighting a losing battle? I have had dizziness for 8/9 months now along with a hole host of other symptoms and I have come to a dead end, I have been searching for answers for months but keep coming to the same conclusion, I have had a multitude of tests, scans etc and the doctors to are drawing a blank, does anyone else feel like it might be something you have to live with for the rest of your life? X
I feel that way every day and I cry a lot. It's so depressing and frustrating. 9 months and little progress. I feel ok some days and then it's back. I hate this feeling. Like my whole life is going to be like this.
Have you tried Vestibular Rehabilitation Therapy?
Have you had the caloric test done? It'll show if it's your ears causing it. This is how I got my diagnosis of labrynthitis.
I haven't had a calorific test but have vestibular rehabilitation therapy! They initially told me it was vestibular neuritis but have since back tracked and said they aren't sure what's going on, all they can say is they don't think it's anything sinester!!!! Which is great but it doesn't help me, I still feel as bad as I did on day one, yes I have good days but then the bad days make me forget the good days and I'm back to square one, I'm sick of feeling sorry for myself I just want to get on with life without worrying all the time x
Over 5 yrs for me so I hear you. I have been working on my SCM muscle in my neck since the muscles are tight and I think it could be helping some. Look up SCM muscle issues and how to fix them and give it a try. You have nothing to lose.
Ys agree, 6years for me. When I read this and many others the sameIMhave come to conculsion they dont know!agree with rocksold, also check,the Occipitals, muscls below skull atnthe back, above neck.
I work on those as well
Me,too!
Tell them you want the caloric test it'll show if you have damage and then they'll know what's causing it. I know how you feel I've suffered over 4 months now it's a horrible illness 😞
They also keep fobbing me off with the good old it's anxiety, it's just anxiety all the time and dishing out the pills, I've never suffered with anxiety up until now and that's only because of what's going on!! I've tried therapy that didn't really help, I've had counselling, acupuncture, chiro, physio the list is endless the only thing I think I haven't tried is a head transplant lol.
I had bloods last week and it showed my electrolytes were low but not enough for gp to do anything so I googled it and have now decided to take magnesium as I here low magnesium can cause dizziness etc.
I'm off to see a neuro doc Monday so maybe he might be able to shed some light on things?
For me bad days are constant dizziness or unsteadiness which leads to fear and heart pulpertations and a general feeling of ffs why is this happening to me and makes me panic that something isn't right, I know the mind is very powerful and it's great at tricking you into thinking the worst but honestly who doesn't fear the worst when this is going on all the time xx
I just came from the ent and he said the anxiety will make it not get better. And he said continue vestibular rehab
Its right that anxiety will not help, and that would apply to any illness. But as we all know it,is not the cause, and they dont seem toget that or,choose to,ignore and blame it on anxiety!
Exactly Gillian they are saying that it could be anxiety, well I didn't have anxiety until I had the dizziness so I know it's not the cause, yes I know the anxiety makes it worse and the hole fight or flight then comes into action but I didn't wake up all of a sudden and I have anxiety did I ?!?! No I got whatever is going on and that then caused anxiety not the other way round...! I'm very well aware that it makes things worse and I need to control the anxiety however how can you control the anxiety when you feel dizzy etc?!?! X
Totally agree,but they seem to,go deaf when you say all that eh? The number of times i've seen the eyes glazing over look from them is a joke!they need to swap heads with us for at least a month and understand what we have to endure,on a daily basis. Makes me so angry too! (Which i have told them Too!!)
Hi Emma
I've been goint thru this it will be a year in July. I totally agree with you. It seems as if know one can really figure this out. I've been researching and looking for answers for months. You can't read anything online because there are to many opinions about what is happening. The only thing that seems to be the same in all of this is the "stress and anxiety" factor. I've noticed in reading that almost every person who has this or did, was in some type of stressful event prior to it.
Also most of the people who have it, have anxiety disorder, so naturally when we are hit with this awful dizziness that comes out of knowhere, I don't know about you, but my anxiety went thru the roof and it has taken me 8 months to finally start to calm down, (my anxiety that is). I still have days of dizziness that will put me down for the night or a weekend. Most days now I have the rocking dizzy crap in the background all day, some days Im lucky to have a day or two and sometimes 3 with no dizzienss, and i can tell you this much, on the days of no dizziness, guess what I have no anxiety either. But when I feel the slightest sensation of off balance or dizziness, i get anxious, I try really hard now not to worry so much, as i know it makes it all worse. I worry its something awful, that they have missed. But I've had blood test all great, head ct all good, docs listen to my heart and say sounds great, I also tell myself like the docs have, if it was your heart or a brain tumor you would be dead now, coz its been going on so long. Yes I know my anxiety has soemthing to do with it being worse, but my anxiety is not the cause.
I was under alot of stress when it happened, so maybe thats it.
But I agree, I'm sick of worrying all the time, I mean all the time. I'm now in psychological therapy for the anxiety. I've spent thousands of dollars on this mess in the past year.
I think the worst part is, the symptoms change and you feel you have to go back to the doc to see if its something new. Mine started with rocking swaying when I was sitting, still have it but not as bad, then the dizziness would come on a bit followed immedieately by a headache with neck and shoulder pain, dizziness bad before my hot flashes, when walking feel like i'm being pushed forward by some force, or walking an feel like i'm on a trampoline or marshmello's, vision is off at times, get a gray vision before a bad headache and dizziness, anxiety, fear, panic, heat palps every morning as soon as i wake up, chills occationally, now its the feeling off falling backwards at times and feeling like i'm going to the left, or feeling like half my head is different from the other half, hands shaking, muscle aches I think thats from trying to balance all the time. Its ever changing so how is one suppose to know.
I'm very sensative to meds and have tried amitriptyline a couple of weeks ago and it sent me into some kind of panic attack i new experienced before so the doc said to stop taking it, Now he wants me to try nortriptyline and I'm scared to death to take it. So yes your right, how are we suppose to get on with our life when everyday is diferent. I dont know about all of you, but its hard to plan anything now, I have anxiety just going out alone, i worry about something happening and no one knowing what to do. I work all week in an ofice in front of a computer and by friday night I am whipped, all i want to do is rest. I am even having a hard time cleaning my own home, I can't vacuum or mop anymore cause it will send me into a dizzy spell for 2 days, I don't bend over as much if I can help it, coz that causes dizzinesss for me. Showering is tough to, but i'm trying not to get anxious wtih it. I used to be on the go all the time, now I just go home and sit on the couch and pray this will stop. i am thankfull for the good days I've been having, but the bad days make me forget the good.
sorry to ramble on, but I guess I needed to get this out. I'm so tired of being anxious and worried and sick all the time. I worry alot about wether this is a life long disorder and how I will take care of myself when i'm older. I mean I'm 53 now and its stopped me so i can't imagine in 15 years.
I pray everyday for all of us that this goes away and we all can be happy again.
Hi Emma
Have you googled BPPV?
I had it for 7 years before it was diagnosed - then it was simply 'fixed'.
Just google it and see if your symptoms are similar.
It might be worth trying a magnesium supplement. Some of the symptoms you describe fit in with those of magnesium deficiency, as it can cause dizziness and panic attacks, and muscle pain. Apparently it's quite common, as it's quite hard to eat enough, as it's things like beans, nuts, seeds, and fruit and vegetable that contain it. I have type 1 diabetes, and decided to increase my vitamin d, and then I started to feel dizzy, and did a bit of reading and realised it was a problem with not enough magnesium, so now I am taking a supplement, eating a handful of pumpkin seeds every day, and a couple of bananas. It can't do any harm to eat a few foods containing magnesium anyway. Though if it's been going on a while it might be a more complicated problem than just a magnesium deficency, but it's worth a try.
I have started taking magnesium today as I did read that it can cause dizziness! I've had recent bloods and they said electrolytes were low which is things like sodium, potassium and magnesium so decided to give it a go as can't do any harm can it x
I have and unfortunately my symptoms don't fit bppv but they do fit pppd, I'm super fed up now x