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 Having a really bad week

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emma;)

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PostSubject: Having a really bad week   Thu Oct 11, 2012 12:15 am

I have had a horrible week and I just need to let a little steam off.

Since seeing the opthamologist in September I have been doing OK even though I was told the pressure was back up.
I went on holiday and had lovely two weeks in Cornwall, which didn't get the rain like every other part of England.
Very Happy
then I saw my neuro last week he up my meds to 1000mg a day said even though pressure was up I was OK I wasn't having headaches and my eyes where ok even though there is another of pressure on left eye it wasn't affecting my vision that bad. I was really pleased with this has I was scared he was gonna send me for another lp. A appointment was made for jan after i had seen tge opthamologist again and we would see where things where up to. This made me so happy i felt i could try just getting on with life for next three months without worrying about my appointments and if I have to have another lp cause I am that scared of them it makes me feel physical sick. (I know I am a whimp )lol.
Sunday was bad has I was being sick with just uping the dosage from diamox and then it settled.
Then things changed yesterday first I received a letter from DVLA they revoked my licence which upset me but I half expected it to happen so now I rely on others to get my round [You must be registered and logged in to see this image.]
then I found a lump in my neck. Which is making shallowing more difficult. What worries me is I have an underactive thyroid and this could be causing the lump. Went to gp this morning and they did blood's have go bk first thing tomorrow and then take it from there. Then I had an Auidology appointment and both my ears have got worse I am now moderate deaf and now to have hearing aid for both ears.
my right ear being worse then the left one.
Oh I just thought things where looking another brighter. I know the lump isn't cause by the IIH but the problem with my ears and losing my licence where. Feels like the straw that broke the camels bk. [You must be registered and logged in to see this image.]
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lizzie793
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PostSubject: Re: Having a really bad week   Thu Oct 11, 2012 10:20 am

Have just been reading your post I am sorry you are having such a bad time. It is such a horrible illness. I hope thingscstart to pick up soon. It is the post you have put about your hearing I find interesting. I. My hearing got very bad on diamond I was diagnosed with a 30% hearing loss. My nureologist suggested that I change to toprimate as I was struggling quite badly with a lot of the side effects on diamox and since changing I don't have any side effects and my hearing is totally back to normal.
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emma;)

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PostSubject: Re: Having a really bad week   Thu Oct 11, 2012 1:39 pm

Thanks for u reply.

Before I was diagnosised with IIH I already had hearing problems in 2010 I was given an hearing aid for my right ear has I was viewed has being slightly deaf and there was problems with my left but not bad enough to have an aid for that ear. So I am not sure what cause this problem. Before I started to take diamox I had noticed a sudden in my hearing. But I will bear in mind what u have said and speak to my neuro about it when I next see him. Cause u never know do u. The Auidology whom I saw yesterday said that my hearing can change and get better so she wrote to ENT to ask them to see what the underlying problem is a try and fix it.

Been doctors this morning doctor thinks the lump is my glands that are infected he put me on high antibiotics for two weeks. He will see me again in three weeks to make sure lump has gone if not they will investigate more. But my blood's from thyroid had not come back yet so I am hoping when they come back they will been fine.

I know there is quite a few on here that have pso I was wondering what meds are available for us to take. At the moment I take networking which I have been on for five years but now I need to start having blood tests to check vit B12 is OK has if not I have to have it injected has it's not like other vits which u could get by eating foods or by tablets. My doctor may want to change it but the only other tablets I know to treat pso usage pill and things like that which I am not allowed to take because I have IIH and some because I have asthma. I was just wondering so I could review my options.


Last edited by emma;) on Thu Oct 11, 2012 2:42 pm; edited 1 time in total
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blisa05
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PostSubject: Re: Having a really bad week   Thu Oct 11, 2012 2:03 pm

Oh Emma, I am so sorry this is going on.
I really hope things start getting better for you!
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medmisfit
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PostSubject: Re: Having a really bad week   Thu Oct 11, 2012 4:48 pm

I'm sorry you're struggling so much right now Emma! Hopefully the majority of your symptoms are from the infection and will improve w/ antibiotics. Feel free to steam away any time..we all need a vent session from time to time and you're definitely dealing w/ a lot. Good luck w/ the ENT..keeping my finger's crossed for good results!!!

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Julie
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Heidi
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PostSubject: Re: Having a really bad week   Thu Oct 11, 2012 7:36 pm

I am so sorry you're having such an awful time of it. hug Hopefully the antibiotics will see off the worst of it. Are you under a Gynaecologist at all, because it might be worth having a chat with him about your options, you could ask your GP or even your Neurologist if he could refer you to one. That way you could discuss with them the right option for you, as well as be able to ask all the questions you need to.I wondered if you might find this helpfulPolycystic ovary syndrome - Treatment
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Wylee
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PostSubject: Re: Having a really bad week   Fri Oct 12, 2012 3:43 am

Gee Emma, how simply terrible, when things were starting to look so good, out goes that darn rug, straight out from under you, again.
Do keep good notes on the medication symptoms log. Maybe going back to your previous dose would be a better option?

I hope you get to feeling better real soon.
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