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 Lizzie Diagnosed 28/5/2012

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lizzie793
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PostSubject: Lizzie Diagnosed 28/5/2012    Tue May 29, 2012 2:30 pm

I finally got my diagnosis officially yesterday after waiting a month not know what was going on and as I thought it is IIH. The Dr thinks that mine may have been caused by me taking Roaccutane for acne last year. However I have got to say it was not an experience that I enjoyed as I was made to feel quite small. I was asked whether or not I was having any side effects from the tablets to which I replied all the usual pins/needles, muffled hearing, wooshing in ears, but I told him that I was struggling with tiredness, He then stated that these tablets don't cause that (sorry it is there in black and white on side effects) and suggested that I myself was doing that by acting poorlier than I was. I was then given the talk about loosing weight. I am slightly overweight but need to loose about half a stone.

He suggested that I take the tablets 1 four times a day as this sometimes helps with the side effects.

I asked him what happened with treatment and how often I need to see him, he just said not very often and then said it was up to the Opthamology Department to watch me.

I then mentioned that I had not been at work since my hospital appointment and he asked me why and again stated that I was very nervous when I came in to which I informed him that I was nervous because I had been waiting a month for answers but he said that I needed to get back to work as I was talking myself out of it.

My own Doctor could not have been more different as as he did not want me back at work until I had a diagnosis and I was dealing better with the tablets and he had said to me last week. "You are talking like you have nothing wrong with you, you have a rough month finding out you have got something wrong with your head and have to deal with some nasty side effects from the tablets, give yourself a break".

So yesterday I came out feeling like I was overweight, totally neurotic female that was basically skiving from work and had nothing wrong with her. Not a good day :(
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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Tue May 29, 2012 5:57 pm

I'm so sorry you went through that I'm glad you have a defendant dignosis of IIH now.
Give yourself time as IIH can be very disabling and if you and your GP feel its best to take time off of work don't feel bad for it as you do have a condition and are sick. Give yourself time to adjust.
There is no guarantee that losing weight will ease your IIH symptoms as that usually only works if weight is your trigger. It is good for your general health if you can be at a healthy weight. Idiopathic means "of unknown cause" so it may take time to figure out what triggers your IIH.
I think you may have got a few of your IIH symptoms and side affects of medication a little mixed up,Whooshing in your ears and fatigue is usually a symptom of high pressure but the pins and needles a side affect of Diamox.
Here are the Diamox Side Effects I really hope you find a solution soon and any questions please don't hesitate to ask.
:flower:
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Heidi
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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Tue May 29, 2012 7:09 pm

Lizzie what an absolutely awful experience you have just had. hug Tactless is not the word for the way that Doctor spoke to you, but downright rude and condescending! As for telling you you don't have to go often, is not a suitable answer to tell someone who has been told they have a rare incurable condition, if indeed you have been told that at all.

As Nikki says the whooshing is usually an indicator of high pressure and isn't from the Diamox. Keeping a symptom log and also a medication log will help you to recognise the seperate symptoms, as well as keep an uptodate record of what is going on with you.

As a patient you have rights read What are my NHS patients' rights? and you are also entitled to make a complaint or ask to see another Doctor if you aren't happy with the one you have got.

PALS are there to help resolve and help with any problems you may have in regards to your treatment in the NHS, and will help you with the complaints procedure if needed.

You should not have been made to feel the way you do after seeing that Doctor, he should have been informative and reassuring, so that when you left you were both confident in your treatment plan, and in him, rather than be left to feel like you wasted his time, had imaginery symptoms and none the wiser about what happens in the future with appointments and monitoring.

His whole manner and approach to you were unsatisfactory and unprofessional, and I would not be happy seeing him again under those circumstances. As your GP is more approachable and sympathetic to you, it might be an idea to have a chat with him about what he could do about you seeing another Neurologist instead of that one, so that you wont have to go through the stress of seeing and dealing with him again. hug
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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Tue May 29, 2012 8:16 pm

Dear Lizzie, I feel so bad for you. let me reassure you with my story. I am a doctor, and I have been treated just as awfully through my illness. I have been told it was just sleep deprivation, just depression, all I need is the right antidepressant, I'm lazy, etc. meanwhile I felt like I was 200 feet underwater and tried to tell them it was not sleep deprivation or depression. I could barely function, and even my own husband questioned whether there was "a mental component". I am lucky, in that I knew enough medicine to figure out what was going on with me eventually, and I knew enough to know when a doc was completely wrong and and an idiot and I just ignored them. if I meet one I don't like or who says something stupid, I move on....NEXT! a big key is having health insurance that allows you to make your own decisions and referrals. I am in the US and I don't understand the UK system to know what your options are, so listen to Heidi on this. please don't take what this doc said to heart, he's a jerk. I have seen docs say the stupidest things to cover up their own ignorance. losing weight and exercising can be a big problem when you are as ill as we get, so please, be gentle with yourself. I felt just as sick when I was 126 pounds, as I do now 30 lb heavier. I actually "crashed" into this illness after losing 10-15 lb so in some ways weight loss was a trigger that I don't completely understand. I have a theory involving hypoglycemia potentiating glutamate neuroexcitotoxicity which might cause brain edema; a problem for us. so however you diet, don't let your blood sugar level drop. do it very slow. for me my sleep apnea is my biggest trigger, and for a long time thought the symptoms were just from the sleep apnea, but it's more complicated than that. I am on social security disability for all of my symptoms which also include chemical sensitivity. it is not possible to function at work when the pressure in your brain is too high. don't let yourself be bullied. get clear on your condition and your boundaries and find docs who support you.
good luck and take care!
Deb
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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Tue May 29, 2012 11:19 pm

Absolutely! It sounds like your GP is understanding & a great support, so I'd ask him for another referral. I'm sure he'd be more than happy to give one once he hears how poorly you were treated. It really is an ongoing struggle with this disease, that's why it's so important to advocate & surround yourself with supportive people. I think most of us have been there at one time or another, so please don't get too discouraged!
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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Thu May 31, 2012 6:04 am

Hi Lizzie! Smile

I'm glad to hear you finally got your official IIH diagnosis, but I'll add my voice to the chorus of others here who have already suggested that you try to find another doctor. It sounds like you were treated very unprofessionally by this current specialist you are seeing. I know I have often found myself confused over whether a symptom I was experiencing was caused by the IIH or the Diamox... and you need a doctor who understands what a tough medicine Diamox is, and will not be so dismissive with you.

Keep talking with your own GP as they seem to be your best advocate right now. *big hugs* Stay strong, sweetie. This disease is life-changing and it's so much to adjust to at first. Diamox is life-changing. Everything you are dealing with is totally normal and I can relate. And if you ever feel like you do want to think about trying weight loss, I would be happy to share my story with you. Keep us posted on how you're doing, hun! Smile
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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Thu May 31, 2012 4:57 pm

Massive hugs

IIH is not easy for anyone. I was very sick for years without help before having it seen in my eyes. I had already had to leave my job as i was too sick but the doctors had told me i was mentally sick and it was stress. then a year from loosing my job I was told i had iih now a year on from where you are now i have a vp shunt and would say im heading full steam into remission. No drugs helped me so vp shunt was the only way for me.

IF you look for VDubsTDi on you tube then you can hear how my life and iih have been

massive love and wish i was good with advice but thats what the others are for i give big hugs xxx


Dyslexic & Special

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medmisfit
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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Thu May 31, 2012 7:09 pm

I'm so glad you've maintained such a positive attitude. I also lost my job before I was properly diagnosed, but a couple years after shunt placement I was able to go back to work. I've maintained a full time job since 2005 even w/ four revision surgeries, so it is possible for some once IIH is managed properly.

Good luck, and thanks for taking your story to youtube..awareness is key!!
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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Tue Jul 10, 2012 11:48 am

It has been six weeks since I went to see the dreaded Consultant. Since changing the way I take my Diamox. I now take it four time a day. I am still getting side effects but they are more bearable. The headaches have kicked in with vengeance though which is something that I had not really suffered with previously.

I have had my first field vision text and I am to continue with these every couple of months and have visits with the Opthamologist. I have been dreaded my next appointment with the Neurologist after my experience last time. My appointment was on Monday and I did not see the same Consultant as last time, obviously not important enough, but the gentleman I saw could not have been any different, he made me feel at ease he listened to everything I had to say and even said that he thought I had done the right thing with regards to work bearing in mind what I do, (I working in a busy Human Resources office(, which means I am sat on a computer all day. he discussed with me all the different options available in terms of medication. He has suggested that I may want to try Topiramate as an alternative as this drug is particular effective for the headaches. Weight was only mentioned in connection with this drug because he was actually telling me that it could cause weight loss, not because he was suggesting that I was. He has left me to consider this and he is going to write to my doctor and ask that he discusses this in detail with me. He is happy with what the Diamox but he has said a lot of the early stages of this illness comes down to trial and error with regards to getting the medication right. He is happy to see me in six months as I am having regular appointments with the Opthamologist, but said that if anything changes or I am not happy about anything I should contact him. Just shows you what a difference another doctor can make.

I am not back at work yet but am working closely with them to ensure that I am able to go back and they are trying to ensure that I take more breaks and spend more time away from the computer if needed.

At the moment I am feeling quite positive about things, I am obviously worried about the possibility of changing my tablets and struggling a bit with getting my head round the fact that I have an incurable illness, I presume this will come with time, it is early days. But hopefully things are looking up

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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Tue Jul 10, 2012 4:39 pm

Lizzie I amso pleased for you! hug It sounds like you are finally on the right track and that seeing that Doctor has made you feel a lot better and more positive. He has given you information and options which not many doctors do, as well as making sure you know you can contact him. This kind of doctor makes all the difference, and I hope that he will be the one who continues to oversee your care.

It is also fantastic to hear that your employers are doing their best to help you, and are being very understanding about your IIH and it's effects. These two outcomes combined are half the battle with this disease, and it relieves the stress that both these things can create when there is no understanding, information or help.

I look forward to reading more posts from you and I'm sure so will our members.

Heidi
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medmisfit
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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Tue Jul 10, 2012 7:26 pm

Lizzie, that is great news! I know that finding an effective treatment can be an overwhelming and daunting experience, but it sounds like you're in good hands now. IIH is such an invisible illness it's really important to surround yourself with compassionate professionals.

Heidi's right, it's such a huge relief to know you have a physician and employer that understands..I'm so glad you're in a good place right now!!!

hug
Julie
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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Wed Jul 11, 2012 1:00 pm

Thanks for posting your great update, Lizzie ... so glad to hear that things are getting on track for you with the management of your IIH. You're so right -- having the right doctor really does make all the difference! Very Happy
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PostSubject: Re: Lizzie Diagnosed 28/5/2012    Wed Jul 11, 2012 4:34 pm

Good news, Lizzie. A good Doctor makes all the difference.

I hope you find relief through the meds. Even though IIH is not curable, it can go into remission for years and years. Keeping fingers crossed
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Lizzie Diagnosed 28/5/2012

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