Can anyone else identify with me sometimes feeling slighty drunk?

[Galaxy2]

Thats the best way I can describe it, I often have a feeling of just feeling not with it, finding it really hard to concentrate on anything, getting my words muddled up when I talk and type. When I am like it I don't want to go anywhere as I don't feel confident to even cross the road. I don't have it all the time so doubt it is a side efffect of my medication but would be interested to see if anyone can identify with it.

[NannyAlli]

Hi Jenny

Oh yes deffo can relate to this and i also use to hide away from ppl.

But i have a good friends and they all understand me and if i do get muddle up we can laugh at it x

[Hidden]

Steroids and chemotherapy both left me with a slightly disconnected feeling and depression can also produce similar effects.

[vivdunstan Volunteer]

I'm like this for much of the time. It's similar to what is referred to sometimes in the context of other illnesses as brain fog. In my case it's a direct result of brain damage from my cerebral vasculitis. What form of vasculitis do you have Jenny?

I just go with the flow with mine. When I'm more confused (I'm always pretty confused) I don't try to do important things. I find the confusion/brain-tiredness typically worsens after doing anything, including brain stuff, so I restrict anything like that to no more than an hour. Then I usually need to lie down to rest. For example near the end of my part-time PhD I had to restrict meetings with my supervisor to no more than an hour, because after then I would deteriorate rapidly, losing the ability to hear, to speak (getting very slurred), to think, concentrate, and even to control my limbs. I also had to do the PhD study in 1 hour chunks near the end, spread throughout the week. If I tried to do stuff (even non physical stuff) for any more than an hour I would be in the bad state again.

It also makes watching long TV programmes a challenge. I'm only occasionally up to watching stuff that's over an hour long. Or I have to watch it over separate nights in stints. Thank goodness for Sky+ recording for us.

[Layla_Mc]

Hi Jenny,

This is exactly how I felt. What type of vasculitis do you have? I was also dizzy and found I was sometimes staggering when I walked. I was terrified it was cerebral vasculitits but frustratingly my consultant told me my vasculitits was mostly confined to my skin but was a nasty illness and I was bound to feel "bit unwell". He said it could take few more months to fully feel better and if I hadn't improved by Xmas then he'd send me for MRI. I was frustrated as I thought he was not taking it seriously. I felt so out of it - and like vivdunstan - am finishing a phd. It has made work so difficult as my supervisor is disappointed with the speed and quality of my work, though I half killed myself to meet deadlines. Considering I could hardly speak at times I thought I was doing great! After a mortifying meeting with him where I mixed up all my words and could barely make sense - and was almost crying with frustration- he realised how sick I was and backed off - a little. Like you I had to stay home and worked from home for 2 months. My GP sent me for vestibular function testing with a physio who identified some problems with my inner ear, he thought maybe the vasculitis had exacerbated an old ear infection injury but wasn't sure and had no experience with vasculitis. I was still on fexofenadine at this stage and had just came off the steroids. I did exercises with the physio and also came down on meds as my skin was much improved. Now finished physio and off all tablets and feel a lot better. Was like the cloud just lifted almost overnight within a week of finishing meds and now I feel like I can think clearer. Not sure what caused it but improving lots, though still get very tired. Back in work now and have just weeks left to write my thesis and while I am definitel slower than others I'm getting there.

Best of luck.

Layla

[vivdunstan Volunteer in reply to Layla_Mc]

Oh good luck with finishing off the thesis! I got quite a lot of disability support from the university during my part-time PhD. My supervisors were also very understanding, though I had to explain things to them very clearly: having an invisible illness isn't the easiest for others to understand. I also got special arrangements for my viva. It was restricted to one hour for disability reasons, because otherwise I couldn't have defended myself properly after that time, and would have deteriorated far too much. Also had to arrange a wheelchair accessible venue for the viva itself. But I got through. My viva was in March 2010.

[Galaxy2]

Thanks all for your replies. I too have a form of vasculitis that affects my skin and causes bruising under the surface and ultricaria, I have had all sorts of tests to rule out any other form of vasculitis. I have been off work for over 6 months now and felt so ill for so long haven't been doing much at all except sleeping but now I am feeling better find that as soon as I try to do anything that requires concentration have this horrible 'spaced out' feeling very quickly. I'm so uncomfortable when I talk to people I don't know as I'm sure they must think I have been drinking, and am often dizzy too and worry about falling over. I'm sure the medication doesn't help but good to know I'm not the only one. Thanks Jenny

[Layla_Mc]

That's exactly what I seem to have Jenny. Have the urticaria and bruising too. Its great to hear someone else has the exact same problems, I was starting to feel like a Whinge, because it is contained to skin I thought I should be better than this now. Have been sick since last June too. I had something they thought was ME years ago and now doc wondering if in fact it was something to do with vasculitis. Have you had this before? As I'm off meds now my doc is bored with me now. But for example I had to work late last night and as a result I am so exhausted today was totally dizzy etc and sent home from work as I couldn't do anything and my legs hurt too much to walk upstairs. That's not fully better in my eyes! Best of luck to you Jenny. Hope you start to improve soon.

[Galaxy2]

Hi Layla. Thats a real co-incidence as I was mis-diagnosed with ME when I was a teenager and was ill then for about 5 years. My vasculitis is caused by Sjogrens Syndrome but I also have some Lupus symptoms, I started getting ill again about 4 years ago and the bruising on my legs started to appear then, but my worst spell of it started last summer, when I started getting numbness in my arms and legs too. It took a long time to get the correct diagnosis as at one stage I was also mis-diagnosed with HSP, my specialist thinks that it all started when I was a teenager but was just not recognised. The sun for me is a trigger to my symptoms and can start off a flare. I am also lucky enough to go to St Thomas's now and have a really good specialist who really knows his stuff. Be careful not to do too much, I carried on working last year feeling so ill and ignoring my symptoms and then just became so ill I couldn't even climb the stairs without feeling totally exhausted and have been off work now for over 6 months. Take care and I hope you get back to normal soon.

[vivdunstan Volunteer]

I was misdiagnosed with ME too, falling ill in 1994, aged 22, and only diagnosed properly with cerebral vasculitis in late 1997. Initially my symptoms did look very like ME. Then they looked more like MS (with things like severe bladder incontinence that are typical MS) and I had to fight to get more tests. I was very worried I had something that could turn out to be far more serious and needed urgent treatment. I was right.

My consultant thinks that I had ME and it developed into cerebral vasculitis. I think the diagnosis was wrong.

[BooBoo39 Volunteer]

Hi Jenny, i too suffer the same spaced out symptoms and confusion. Sometimes i feel so drunk i feel like i am walking on a north sea ferry on a rough crossing. Like you it comes and goes unpredictably this draws me to the same conclusion that it is the condition not the different meds i do notice it is much worse on occasions when i get tired more than my usual fatigue. Which also impacts on my speech. I have Cerebral Vasculitis. In early days ME was mentioned but not formally told, i have always been diagnosed with CNSV

Its a comfort to know others suffer these weird events.

Keep battling

Jo