Persistent dizziness and nausea since subarachnoid haemorrhage

[Phoenix_Faith]

I often feel like I'm the only person who feels like me! I wondered who else is going through anything like this. My subarachnoid haemorrhage (from a ruptured aneurysm) was treated by endovascular coiling n November 2020. In January 2022 I had gamma-knife radio-surgery for an AVM. I have been dizzy, with balance issues, nausea and vomiting a few times a week (in the mornings) ever since I woke up in hospital. I was subsequently given a diagnosis of Persistent Postural-Perceptual Dizziness and have been doing daily physio for well over a year, but I still feel as though I'm standing on a small boat in choppy waters, trying to stay upright. The thought of it possibly being permanent horrifies me so clearly I'm not doing a very good job of coming to terms with it! Any advice, resources or anything that might lighten the load a little would be gratefully received.

[Leaf100]

Hi PF,

I have an mtbi though not that diagnosis.

I did have dizziness and nausea quite badly for quite a long time, and balance issues. I used to lean over so far some people would come running over thinking I was going to fall. And I spent quite a bit of time with my head in a bucket, or on the floor in the bathroom with the room spinning. (And no, not a drop to drink.)

What helped me were things that helped my proprioception - ie helping my brain know where I was in space. So, some of these things were : using a 4 wheeled walker - you might call them zimmer frames over there, but I'm not sure; running my forearm along a wall when walking at home without the walker; using a weighted blanket; reducing visual disturbances by wearing sunglasses with the tops and sides also screened in, plus a hat; reducing sound by wearing sound reducing gear - either construction muffs or those ones musicians use - one brand is called Loop, one here is called D-Bud; and not watching fast moving things on tv - where I also reduced the contrast and the saturation..

Your mileage may vary.

In my case , yes, it did diminish over time - it has taken a really long time, though. I can't say it's totally gone, but it's 1000 times better than it was.

I tried a vestibular phsyio therapist, though that just made it a lot worse, so I gave it up. It seemed time and my own trial and error did the most for me.

Sorry you are going through all that, it is not a great thing to have to weather.

Our brains can and do adjust though.

Leaf

[Phoenix_Faith in reply to Leaf100]

Thank you much Leaf. This is all so interesting, and I hadn't heard any of this before. I'm so grateful to you for sharing this.

Since embarking on my dizziness 'journey' I'm finding that quite a few people I know also have dizziness of one kind or another - oh my goodness there seem to be so many different varieties! I totally take your point about avoiding fast moving things on TV. My physio had given me some exercises to help re-educate my brain to manage complex/fast-moving environments better, but actually I don't think that has been my biggest issue. It's really hard to describe what my issues are! Looking up is definitely one of them though, as is looking to the right and left. It feels like my head is floating and makes me queasy. It's horrible. One of the medical team advised me not to avoid 'safety behaviour' - I think the idea being that if I start to avoid situations that make me uncomfortable/dizzy/nauseous I may never go out or do anything!

I think in the end only we can be the masters of our own symptoms, and I completely understand why you gave up vestibular rehab. I do take comfort knowing that your symptoms diminished over time. I think in the meantime I must try not to let them define me. It's really hard though!

Thank you so much again Leaf, and very best wishes

Faith

[Leaf100 in reply to Phoenix_Faith]

Hi Faith

There is an idea that exposing yourself to small amounts of what bothers you helps build up your tolerance.

If you constantly try to do everything you did before, you'll only wear yourself out and if you don't get proper rest, you won't heal.

The trick is to find the happy medium. Or, to rest a day or two, do the activity that you really want to do that bothers you, and plan to rest after.

The reason I gave up doing the vestibular is that doing the exercises was so debilitating I could do nothing else quite literally, and since I live on my own I did have to do the necessary, like be able to get to the bathroom on my own and get food in me somehow. And, I also just couldn't go on like that.

I also just remembered there are neuro optometrists out there, though at the moment there are no standards for them. These are people who look at the eyes and the brain and how they interact. They have prisms they can put in glasses (whether you wear them normally or not) that can change, for example, the perceived speed of something. I use this as an example as one woman I asked said that if something went by her peripheral vision it made her feel ill, and the prisms somehow made it so that didn't happen.

I did get checked out by one and don't need prisms. Some people really swear by the neuro optometrist here and some got nothing out of doing it - and the cost isn't covered. I had a neuropsychiatrist at the time who had a lot of patients who tried it - he felt checking out the prisms was a good idea, but the actual therapy was hit and miss and so he didn't recommend it unless someone had funding.

You also don't want to put yourself in places where you literally do throw up, as doing too much of that can damage the part that closes between your stomach and your windpipe, which is not a good thing.

And, while I am on the topic - if you are on medications that make your mouth dry, you will get cavities. Your eyes will also be dry, which can harm your vision long term. So, make sure you don't get dehydrated and do use eye drops and things like xylitol in your mouth - xylitol is a sugar that helps your mouth stay moist - and, it is a sugar that the bacteria that cause cavities can't digest so it kills them. You usually can find both toothpaste and mouth spray.

Leaf

[Phoenix_Faith in reply to Leaf100]

Thank you so much Leaf. I realise I've never been a 'happy medium' kind of person, and I think with the way I am now it would be helpful if I can learn to be more that way. I do actually have a dry mouth, although my eyes are okay, and I always keep water with me, which I didn't do before. Even back when I was in hospital I remember being advised to stay hydrated. It sounds so easy, but sometimes I need to remind myself how important it is!

I completely understand why you had to give up the physio. Conversely, I stopped doing the exercises that didn't trigger symptoms because my understanding was that you are supposed to feel 'uncomfortable'. I have to say that I do feel better for doing the exercises, but it might just be that I'm pleased with myself for getting them done! Even if it works as a sort of placebo effect, I feel (at the moment) that it's probably worth carrying on, even if they don't feel they are helping much in the 'real world'.

I haven't heard of neuro optometrists and am not sure how I feel about it! However, thank you for bringing them to my attention.

Many thanks - Faith

[Letsrock in reply to Leaf100]

Hi leaf100, thank you for the advice and reassurance as I have had mine fir 2 years now and, as you say, with no help from doctors who just call it a migraine. Good to know it will go away even though the head actually hurts at the back when I lay on pillow.

[June08]

Has anyone looked into planetary shifts? I've heard that this could be one of the symptoms... Just a thought!