Feeling a bit rough.

[Charli84]

Today I feel terrible. I woke up and I felt like my head was spinning then a friend of mine that I haven't seen for 13 years came over for a cuppa and I didn't even feel in the room the whole time she was here. I still don't feel like I'm on this planet now it's as if I'm just doing things and I don't even realise I've done it. It's such a strange feeling. I have a headache right above my left eye and I just feel like I need to sleep my ear is also ringing. Are they Hughes symptoms?

[Charli84]

I'm having my INR taken today at 5 shall I mention it to the nurse? Actually saying that when I first moved here in November I mentioned to her about having Hughes and she said "oh what's that" so I doubt she will know. Ill give the surgery a call now and see if they can fit me in or do you think I should get my blood done first to see what my reading is?

This happens to me quite a lot and they spinning feeling and the ringing feels like I've had a heavy night on the booze but I don't drink anymore so I know it's not that and the headache is always in the same place, above my left eye and i get an overwhelming urge to sleep. It's horrible I hate it. And as for the not even feeling like I'm here is awful I don't physically feel like I can cope its not good seeing as I have two young children to look after.

Xx

[starships]

This sounds like the symptoms my mum gets but no one is willing to put these dizzy, fuzzy spells down to Hughes. I would love to know what your Dr says and how they treat you.

Hope they can get it resolved quickly for you as I know how much my mum suffers.

xx

[Charli84]

I made an appointment to see the doctor for just before my INR so ill see what they say. My INR should be between 3-4 but it's been all over the place for weeks now. Right up to 6.9 and then down to 2.2 it won't stabilise. Xx

[Charli84]

Sorry just thought I'd add that I take 14mg of warfarin daily xx

[Charli84]

I swear my doctors know nothing about Hughes. I keep going in about these symptoms and all she told me was that I need to see a specialist biut she wont refur me coz its mot her job apparently. She said i need to see my 'family doctror'. Im fumimg. She gave me some pills to stop dizziness. What good is that gong to do. And to top it off I was waiting an hour to see her. :(. My INR was 4.2 tonight which is better then the 2.2 last week

[daisyd]

I am sure dizzy spells are due to Hughes syndrome I am now on Betahistine wonder drug for me.anyway I have found I f I feel a dizzy spell coming on if I pinch my nose and blow like trying to clear ears after a flight, I stops it, but it has to be immediate.

I sent a copy of the Hughes information off the Hughes foundation site to the ENT department and had a letter back saying that they would be more informed now and keep it in mind

Good luck, hope you feel better soon

[popshaw21]

Before i was diagnosis withTemperol lobe epilepsy caused by the hughes,I would exsperience strange feelings and thought i was going out of my mind,these strange things ranged from dizziness,sudden loss of memory,and everything seemed very surreal and also this warm feeling would surge through me and there was an aurora feeling,which i found out was this horrible Temporal lobe epilepsy.

I'am still exsperiencing this strange phuemonia and just recently it has become worse with these frightining visions,which have messages attached telling me to harm myself.I'am able to mentally block out the visions and ignore the messages.Have you had the chance to see a neurologist?it may be an idea, as epilespy is one of the sympoms with people who have hughes syndrome.well i hope things improve for you soon.

best wishes

popshaw

[Hidden]

Sorry to hear your day has not been great. I've had the same day as well, I hate it. Hope you get feeling better soon.

[Charli84]

Wow that epilepsy thing sounds scary but it sounds exactly how I felt yesterday how strange is that. So do you think a neurologist is who I need to see? It is so horrible when I have days like yesterday if only it was as easy as getting back ito be and sleeping through it. I wish I could just do that but I can't unfortunately. I also have sudden loss of memory I get it a lot and my family gp sent me to have a brain scan wen I mentioned it to him but the results came back clear. He has also requested to see me but has nothing available until the 1st of may which is a nightmare. I just hte that nobody understands and I think I will just see my family gp from now on as he is the only one who ever does anything about it when I go in, although I still think he doesn't really know himself lol. X

[MaryF Administrator]

Hi there, sorry you feel bad currently, please use the various papers off the HSF website and push your GP for a proper referral. Lots of us have had to to this, a necessary plan of action. Best of luck with this and keep us informed. Mary F x

[Charli84]

Ok ill get some printed off thanks Mary f. I will take some in to the surgery with me and ask If the doctors can read them. X

[Charli84]

Hi sorry this is going to sound really stupid but what is a TIA's?? X

[Charli84]

Thank you I've had a read. Are these common in Hughes patients?? X

[Hidden]

Hi Charli84,

I have had a lot of TIAs. With me it was microclots. But dangerous sometimes.

I do agree with APsnotFab that this is urgent. Your INR change too much.

Take good care of yourself!

Kerstin