Vasculitis UK
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Anyone experienced a dizziness episode?

I opened my eyes this morning and quickly shut them again! The room was spinning at a fast rate of knots. I opened my eyes again and tried to focus on my ceiling lampshade but couldn't.

I shut my eyes again for a few more minutes and when I opened them I could just about manage to focus properly on the lampshade. I felt extremely nauseous but sat up and got my bearings. After about 10 mins I sat on the side of the bed, still feeling nauseous. Eventually I could get up and made my way to the bathroom where I tried to be sick but couldn't.

I lay back on the bed for a couple of hours where the feeling of dizziness and nausea stayed with me (but not as bad) for the next few hours.

I've never had this happen to me before and would appreciate anyones comments.

(btw I have heart failure as a result of CSS)

14 Replies

No, this hasn't happened to me, not in the way you describe. I have suddenly felt dizzy and passed out completely. At that time my BP had fallen drastically. Doesn't sound as if that is what is happening to you. Did you do anything or eat or drink anything different the day before? Have you changed any meds, forgotten to take any or, dare I say it, drunk something alcoholic when you didn't ought to have because of your medication? I only drank one glass of wine with a new tablet and I felt so ill (I didn't read the instructions).

If you can't put a handle on what caused it, and if it happens again, then have a word with the doctor.



I have experienced something similar several times, room spinning very fast, quite scary really. I found that if I kept my eyes shut, then I could cope. Open them and everything spinning again. It usually lasts about half an hour, and I don't feel nauseous, so perhaps it is not the same but it sounded so familiar.

It comes out of the blue about once a year and I haven't asked for a medical opinion, perhaps I should. This all started about the same time as the MPA was diagnosed.

Unpleasant - very, but it may not be dangerous. As PatriciaAnn says, perhaps get it checked out if it happens again?



Definitely get any re-occurrence thoroughly checked out. I haven't quite had this bad an episode but several less severe, and they were almost always linked to an infection of some kind. I think its probably because of all the meds and immunosupressants in particular. The body loses its ability to fight infections and you have a rather over-the-top reaction to the high ESR. I could be totally wide of the mark but worth consideration. Hope you dont get another such episode.


At the moment I am having the dizziness... The room spinning and loss of balance.. I've had this before and not had it explained why !!! Have an appointment with my consultant this week, this will be on my list of questions..


You might be suffering with vertigo. I suffer and get the same symptons. It's to do with your inner ear. When you lie down it does it get worse?


I get this regularly I have at various times been told I have fluid behind my eardrum when I have seen various ENT consultants who all have their own theories, two of them both gave the same answer 2 years appart and that was that it was Vasculitis hat was causing the problems. I still get it but now I am more controlled it is now 6 months since the last episode.


Vasculitis can cause inner ear problems especially WG. So it is best to get it checked out. Many people who have WG get ear problems. WG can also cause deafness, also WG can cause problems with eyes. Other types of Vasculitis can also cause dizziness. So as everyone else has said it is best to get it checked better to be safe than sorry.


Thanks everyone, for all your advice and comments. I will mention it to my Rheumatologist. I have had a "cold"(?) for a couple of weeks now so maybe the inner ear suggestion might be nearer the mark.

Hopefully I won't have any more episodes of this. It takes me all my while to get going in the morning as it is!

Thanks everyone. Best wishes to you all.


I have CNS vasculitis and I do get episodes of vertigo exactly as you describe. For me it happens when I lie down, the room spins and I feel very nauseous. After six years of treatment I now know that it is a sign that my symptoms are not under good control and I may be tipping into a flare.


Yes I have had very similar symptoms too, again due to cerebral/CNS vasculitis. It was actually one of the first things that I noticed, as I started to fall ill. I would fall over repeatedly due to it, even down stairs. Very dangerous! It did improve with treatment though, one of the few things in my case that did.


yes, I experience this. it also hits me when my eyes are closed. I put mine down to vertigo.

it can be because of a pinched nerve in my neck.

mine can come on suddenly, during the day or in bed.

Stemetil are very good.

regards, sandra b


I also had very severe vertigo one weekend. At first I couldn't get out of bed as was so dizzy and then I felt very dizzy as I lay down. My head would "swim" as I put it onto the pillow. My balance was affected as I walked around and I thought about getting a walking stick.

On the Monday I saw a young GP and he gave me what turned out to be an immediate, magic cure! I really have not had anyhting like the same level of dizziness since!

The GP said I had Benign Positional Vertigo and did what he called The Epley's Proceedure on my head! This is a series of slow head movements. It is very simple and safe and involves no medication. You can look it up online and on You-Tube!

Hope this helps some of you.


It's sounds like Meniers disease. Try to eat less salt.

For me l get more floaty, spaced, out of body experience. Like walking on cottonwool and being disconnected from the world. It last for a few weeks, drives me mad.



Before being diagnosed with WG I went to my GP as I was suffering with extremely bad dizzy spells. I felt like I was really drunk, couldn't stand or walk without assistance, but no spinning room. I also had problems with my hearing. My GP thought I had Meniers, but my ENT consultant thought it was WG, and transferred me onto my Vasculitis consultant. I haven't had a dizzy spell for about 18 months now, although in that time I have had two flare ups.


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