unbalanced, walking on a boat, dizzy

[SnowyGreen]

Some of you may remember I had surgery last year for endometrial cancer. It was early, all gone. They gave me a hysterectomy and took my ovaries too. I guess as my hormones depleted, it awoke a beast in me, named vestibular migraines. Six months after surgery, I suddenly got really dizzy, and felt like I was walking/sitting on a boat and feel unbalanced. Now I have felt like this for the past 7 months 24/7. It left for 2 weeks, I think as my estrogen patch started working a little bit, but now again, it is still 24/7. I'm seeing a neurologist soon, as well as upping my patch again. But I am not coping, and I rarely ever ask for help or talk about myself, and maybe no one knows anything about this, but I actually want to die.
Has anyone ever been through this and come out?

[pulisa]

Snowy, I know that BikerMatt has had months of vestibular issues like you..He has just returned to NMP and posted in the Misc forum yesterday.I know he's obviously not female but has suffered greatly and has been for numerous consultations. He may be able to help and will certainly be able to empathise.

I'm so sorry that you are feeling so desperately low..Your surgery was such a major one and the after effects have been harsh. It is so understandable that you feel depressed when you are absolutely dogged by continuous symptoms which affect your quality of life. Is there any professional you can talk to about this? Any chance of seeing the neurologist sooner? Is there an online support group for people with vestibular migraines/disturbance that you could access for information?

Please talk about how you are feeling on here? We're not doctors but we all recognise when someone is in distress and needs help in any small way xx

[SnowyGreen]

Thanks so much for the reply pulisa. I really appreciate it. I'll get through this, just get moments where I want to kill myself.

Bit bewildered why I didn't get more replies, but I guess I'm not going on about phantom smells, breast lumps and blood in my poo.

[pulisa]

Sadly the more significant stuff often gets overlooked because it's just too complex..

I appreciate how desperate you must feel. Is it worse when you lie down or change body position? Is it like true vertigo?

[Midnight-mouse]

Hi Snowy, I’m sorry that you’re going through this. I’ve experienced something similar, although mine was diagnosed as a problem with my inner ear. But I was always feeling unsteady and off balance, it made me feel so sick all the time. I think it lasted about 18 months (I was also feeling very low at the time so I don’t remember fully) it reoccurs a few times in a year now, usually for a few days. It really does impact every area of life doesn’t it! I had to learn to do everything again with the new balance.

Is there much of a wait to see a specialist? Any way to bug them to get an earlier appointment, perhaps on the cancellation list? Although I’m sure you’re already being as proactive as possible.

I think when someone’s obviously struggling it can be hard to know what to say, and so people say nothing, for fear of saying the wrong thing. Do you have people/professionals in real life that you can say these things to? Especially if the low thoughts get really severe?


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[Lolalee1]

Hi Snowy.Yep I often feel like I’m walking on a bloody boat I know it sucks had a hysterectomy quite a few years ago but this dizzy wobbly feeling I get is due to having inner ear infections which I get often along with debilitating fking headaches
hope you get some answers off the doc.x

[Carnation]

SnowyGreen, I too have been suffering this for nearly a year now. Just like you say, like walking on a boat, unbalanced feeling with lightheaded dizzy feeling. I was putting it down to anxiety, but I've had some weird things going on in my ears. At one time I could feel motion from inside my ear, so I'm tending to think I've an inner ear infection. Although I know the symptoms can be anxiety too, but, hey, not 24/7.
I do these exercises where you centre yourself. You look at an object and move your head from side to side, up and down and corner to corner. You can get a video on the internet. Sorry you are suffering, I know it can really get you down x

[BrokenGirl]

Hi Snowy, just wanted to say that I'm really sorry you're going through this. I've been there too. I used to call it the floaty boat feeling. It started in me about 6 or 7 years ago. Always off balance, had it 24/7. Constantly felt like I was on a boat, swaying. Didn't matter if I was standing up, sitting, lying down or whatever I was doing. It's a very lonely experience because nobody understands how debilitating it can be, no matter how much you talk about it. Mine lasted for about 2 years. I had my ears checked, nothing found. Then I had a brain scan. Again, nothing found. The truth is the doctors never found out what caused it. While I don't believe myself that anxiety causes it, I do believe that it makes it a hell of a lot worse. I personally think it was the medication I was on at the time and then trying to come off - benzos. Awful tablets, side effects are horrendous. It could possibly be a side effect of the medication you are on.
I wish I could offer some advice as to what it causing it but please just hang in there. For me anyway, the more you accept it, the less control it has over you.
I really hope you turn a corner with it soon xx

[Scass]

That sounds horrible Snowy, I’m so sorry for you. I hope you get some answers & help soon x


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[Carnation]

Just was to point out that I have it and not even taking meds, so I can rule that one out. I also have the swaying feeling and if something moves I tend to move with it. I also have the feeling of falling forward occasionally. It's not really a feeling dizzy, it's more like a permanent stay of feeling woozy and unbalanced. Some floors make me feel like I'm bouncing like on a boat. It's horrid.