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 Feel like I am going backwards

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lizzie793
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PostSubject: Feel like I am going backwards   Wed Nov 14, 2012 11:37 pm

I haven't posted for a while although I do check in regularly.

I have been managing quite well I had been told by the Opthamologist that the swelling in my optic discs had gone down slightly and I had been managing the new medication my neuro had put me on Toprimate. I was having no major side effects, although I was having problems forgetting words and when I was having an off day I did find this was much worse and I do find it very difficult to manage to do quite simple things. I had started back at work and was managing, finding it it extremely difficult and very tiring but I have a very understanding Line Manager and office and they have made a lot of changes to my office environment and are very good at checking to see whether I am feeling ok. I thought I was managing. However over the last few weeks I have noticed that the headaches have started creeping back and the odd glich in my vision and the wooshing is back. My hair has also started to fall out which is really quite upsetting. I know that this is a side effect of the toprimate. I am not due to see my Neuro or my Opthamologist until January and unfortunately at the moment the appointment system at our local hospital is up in the air I have already been told that it is unlikely that I will be seen by my opthamologist in January as there is an extra 2 month wait on top of the original appointment dates which is worrying when they are the people that are supposed to be keeping tabs on the changes in my vision. I was told by the clinic if things get reallly bad I would have to go through A&E. I have had to go back to my GP to try and get my neurology appointment brought forward and I am hoping that it is just my medication that needs amending. I just really feel like everything is going backwards again I got to a point last week where I thought that I was going to have to go off sick again something that I cannot afford to do. Needless to say I have been persuaded by my Line Manager to have some counselling as he thinks I have not come to terms with my illness properly, as I said I have a very understanding Line Manager. My GP is going to contact my Neurologist and I am awaiting a date for counselling. Although my symptoms are not as bad as what they were at the beginning of my journey I just feel like I am going backwards. Thank you for listening.
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sammyjo
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PostSubject: Re: Feel like I am going backwards   Thu Nov 15, 2012 11:34 am

the toprimate your on can help but it can also cause your symptoms to worsen maybe a change in med may help. i dont think tou need councling i think the medical community just needs more info and as dose your boss. i know the old to familer sinking feeling when those syptoms start to come back. i think the actual fear of whats to come aka the pain the sickness the blindness the wooshy ears and of course th LP. i know first hand its easier said than done but try to breath and relaxe b4 it gets to the LP point stress can increase the symptoms i am a 10yr sufferer and i am always here for a causual chat or any thing u may need x CHIN UP AND REMBER YOU ARE NOT IIH U R THE PERSON WHO KICKS IIHS ASS EVERYDAY X (read that somewhere on here)
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Heidi
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PostSubject: Re: Feel like I am going backwards   Thu Nov 15, 2012 3:59 pm

Lizzie I am not surprised you are going through the emotions you are, because you have basically been left in a limbo when it comes to your treatment. It is not acceptable that you are having to wait till January for an appointment, when you are suffering from raised pressure now. Contact your hospitals [You must be registered and logged in to see this link.] because they will help you to get an appointment and mediate for you. Your Neurologist has a duty of care to you, and as he is, or should be aware, that as soon as pressure affects your vision, that it has to be dealt with quickly. The fact that he isn't is not acceptable.

One of the things we are working to change, is this whole process with the medical system, of dealing with patients with IIH. At the moment it is far too lackadaisical!

Please keep us updated, and if there is anything we can do just ask. hug
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lizzie793
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PostSubject: Re: Feel like I am going backwards   Mon Dec 10, 2012 12:52 pm

Just thought I would post how I have been getting on. I have managed to get a consultants appointment on 17 December this is due to my doctor writing to the hospital and requesting my appointment be brought forward she has also put be on a small dose of frosomeide this was suggested to me at me consultants appointmentvinJuly along with the primate but I was worried that we it would have the same side effects as the diamox. It seems to be helping my symptoms veenvto have subsided a bit. I definitely think that the primate needs to be lowered though as I am struggling with those symptoms although my hair loss seems better as I have been taken extra vitamins. It is so frustrating that the drugs make you feel worse than the illness sometimes. I spoke to the doctors about works suggesting that I possibly needed counselling and she put me forward for an assessment. I was told that I was very emotionally sound and what I was going through and how I was dealing with it was absolutely normal ie getting fed up upset etc. I have been struggling at work since I went back in September but have plodded on because I needed to feel normal and prove I could do this and obviously because financially I cannot afore to be off long term however on Saturday last week I had a severe nose bleed something I don't suffer from and I had a particularly bad bad day with my eyes and head and I just thought I am not doing myself any favours trying to carry on when I aren't well. So I went to the doctors on Monday and she said have a few days and see how you feel. IWork had booked me an OH appointment for that week and at that appointment I was declared unfit for work and told I was to take st least four weeks off to make sure my med were adjusted accordingly and that I was ok. I think the nose bleed has made me re evaluate things a bit and work have been worried about me so I am going to concentrate on getting well again.
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Heidi
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PostSubject: Re: Feel like I am going backwards   Mon Dec 10, 2012 3:56 pm

Lizzie I am so sorry that you're having a bad time right now. Hug I have been through the same thing in the past with the nosebleeds, medication and work, and I know how difficult it all is. Would your employer allow you to be eased back to work when you're ready to go back? It does make a difference especially with confidence levels, and gives you chance to adapt and cope with your work.

It is understandable that you feel low, you're life has been turned upside down, and you can't control what is happening to you. Take time to come to terms with all this, there is no rule of thumb of how long it takes, because everyone is different. We are all here to support you, and when you need to rant, come and do so in the group huddle, it's not just for questions.

I hope the new medication combination works for you, and will bring some relief. My fingers are crossed for you. We will help you in anyway we can.

Heidi xx
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medmisfit
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PostSubject: Re: Feel like I am going backwards   Wed Dec 12, 2012 7:09 pm

I hope you'll find some relief now that you're able to focus on getting well. Stress makes everything worse and I'm sure you've been feeling it! I know it's stressful to take a leave of absence, but you won't have the day-to-day struggles. I know I have to talk myself into getting out of bed every morning..make a plan of how to deal with certain people, meetings, activities, the drive...it can all be very draining! If you're using all your energy to maintain, you have nothing left for healing..you have to take care of yourself first and foremost!!!

I agree w/ Heidi and would look into a reduced work schedule..ease back into it and see how you're going to adjust. I'll be thinking of you!

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