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 Hi I'm Sarah and I was diagnosed in 1993 and didn't know it could come back again!

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sarah mc
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PostSubject: Hi I'm Sarah and I was diagnosed in 1993 and didn't know it could come back again!   Fri Nov 09, 2012 6:45 pm

Hi my name is Sarah and I stumbled upon this group when
desperately looking for help to find out what was happening to me.



In 1993 I was diagnosed with IIH after I went to have my
eyes tested after suffering dreadful headaches and difficulty focussing. My
optician found papilledema and I was referred to a neurologist to have a lumbar
puncture. My CSF measured 39. I went on
some water tablets and was discharged by the neurologist after 6 months when I
became pregnant. I was told at the time that I had had IIH but no longer had
it! I have spent the past 18 years having occasional debilitating headaches. I
was once sent back to a neurologist 2 years ago when I described my headaches
as the same as they were when I was 1
st diagnosed with IHH. He
looked in my eyes, saw no papilledema and said that I couldn’t have IIH again.
I was sent away with a diagnosis of stress and anxiety.



I have been on amitriptyline for the past 18 months for
chronic nerve pain in my head and neck. Sometimes it seems to be under control
if I lie down for a few minutes several times a day. Other times it feels like
I can’t focus properly, I feel sick, have whooshing in my ears and my head
feels too heavy for my neck. I have not had any information on IIH in the past
18 years and was surprised to find that there is no cure for it but you can go
into remission. How do I get my GP to take my symptoms seriously when as far as
they are concerned I had it 18 years ago end of! I feel frustrated and
desperate for someone to take my symptoms seriously but don’t know what to do
next. Is it possible that my symptoms are not in any way related to IIH and I am
just stressed? If so why was it the first thing I thought of when the same
symptoms came back suddenly 2 years ago?



I am starting to feel very down about it and cannot function
normally on a day to day basis as my vision goes blurry and I feel dizzy and
lose my balance when I turn round. When I bend down I get an intense pain in my
head, the same when I laugh or cough, when I am cold or hot. I went to the Sea
life Centre in Birmingham last week and had to leave because the movement in
the water made me feel really ill. I wish I knew what was going on. Can
remission last this long?
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medmisfit
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PostSubject: Re: Hi I'm Sarah and I was diagnosed in 1993 and didn't know it could come back again!   Fri Nov 09, 2012 9:36 pm

Hi Sarah, and welcome to the group! Remission can last a matter of days or an entire lifetime. I would like to say that I'm surprised your physician isn't taking your IIH into consideration, but I can't. I think they always look for the easy solutions first. I would suggest keeping a symptom log that includes your medication. It will help you track your symptoms and hopefully show any patterns or reactions to meds. I would also schedule an appointment with your optometrist or neuro-ophthalmologist, if you have one. They may be a little more educated about IIH or at least more willing to advocate for you if your vision has been affected. You honestly won't know for sure until someone is willing to do a spinal tap and confirm your opening pressure. You can have IIH without papilledema, so just keep pushing until your GP listens or you find someone that does..it never hurts to get a second opinion and no one knows your body as well as you do!

Take care, and keep us posted!

Julie
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Sophiasmom
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PostSubject: Re: Hi I'm Sarah and I was diagnosed in 1993 and didn't know it could come back again!   Sat Nov 10, 2012 7:07 am

hi Sarah;
it seems obvious to me from your current symptoms that you have IIH now. you probably had intermittent symptoms with it over the last 18 yrs but it just wasn't severe. right now I think you need to see an ophthalmologist and figure out what is happening in your eyes. if you have papilledema then they cannot blow you off any longer. certainly yes you ought to have a spinal tap to confirm. can you just go to neurology or do you have to be referred thru your GP? if you can't get to the LP through ophthalmology and you need the neuro referral then I would go back to your GP with a list of all your symptoms (make sure to use the term pulsatile tinnitus, which is a classic sign and you have it) and ask them if they understand enough about IIH to really tell you you can't have it. say, "OK, do the LP on me and prove to me I don't still have it, because I think you are wrong." I am a doc and if you want to tell your GP that a doc on the site thinks it's obvious you still have it then go ahead and use that card. just saying that you can't have it because your remission appeared to last 18 yrs is completely inappropriate. the doc needs to be paying attention to the symptoms you have right NOW, forget about the past. right now, you have classic symptoms of IIH. and if you have told him about your visual symptoms but he has neglected to refer you for evaluation, then he is negligent. I am so sick of doctors who think everything is in our heads (psychological) if they can't actually SEE our symptoms. I find it abusive.

hang in there and be persistent. sometimes it takes the second visit for them to pay attention to you. you know what is wrong with you so just keep going. believe in yourself.
Deb
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Sophiasmom
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PostSubject: Re: Hi I'm Sarah and I was diagnosed in 1993 and didn't know it could come back again!   Sat Nov 10, 2012 7:17 am

oh, and make sure to discuss the issues in a logical, organized way with your doctor. try to not be too emotional about it. this distracts them and makes them think you are just depressed or anxious. which of course you are! but it is all secondary to the IIH. so try to suppress those symptoms and discuss the other ones. print out scientific studies from pubmed and also scientific descriptions of IIH where you highlight the symptoms you have. good info on IHRF website. this will be info he probably hasn't seen and so you will show him you know as much or more about it than he does. then he will be shamed into investigating it, whether or not he is swayed by your logical argument.
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sarah mc
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PostSubject: Re: Hi I'm Sarah and I was diagnosed in 1993 and didn't know it could come back again!   Sat Nov 10, 2012 8:02 am

Thank you Julie and Deb, I am so glad I found this site, you have made me feel like a valid human being. I have made an appointment to see a different GP at my surgery on Monday and will speak frankly and calmly to him about my symptoms. I only stumbled upon this site yesterday when I was googling Benign Intracranial Hypertension, which was what it was called when I was first diagnosed. Back then very little was known about it. My GP didn't ever see the Papilledema that the optician and neurologist saw, but was forced to take notice when the optician asked for me to be referred. I am disappointed that me being the 1st person he had ever come across with it and the first the surgery had ever had, and me being his patient, that he didn't do more to find out about it.
Once I had been referred to the hospital he washed his hands of me. When the Neurologist discharged me after I had lost 4 stone in weight and had my LP and been on water pills for 6 months, I thought I was cured and that was that.
I know what I am feeling right now, and I know it is exactly the same as it was 18 years ago. I am struggling to keep my head upright and need regular lie downs to relieve my neck and to keep my energy levels up enough for me to get through a day.
Thanks for listening and supporting me. I really do appreciate it. x
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sammyjo
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PostSubject: Re: Hi I'm Sarah and I was diagnosed in 1993 and didn't know it could come back again!   Sat Nov 10, 2012 11:37 am

i wish u all the luck in the world huni it is hard to get the doctors to listen as a last result u could go to A&E tell them ur having a uncontrolable head ache and that u have been treated for iih in the past they will give u an LP they usualy do good luck sweet hart x x
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sarah mc
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PostSubject: Re: Hi I'm Sarah and I was diagnosed in 1993 and didn't know it could come back again!   Sat Nov 10, 2012 5:17 pm

Thank you Sammyjo, I will keep trying and appreciate your support. x
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Heidi
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PostSubject: Re: Hi I'm Sarah and I was diagnosed in 1993 and didn't know it could come back again!   Sat Nov 10, 2012 7:06 pm

Hi Sarah and a very warm welcome to the group, I am so very glad you found us. It doesn't surprise me that you have gone through all you have, and that your doctor has failed you, despite that somewhere in his notes, will be your diagnosis of IIH.

It is 24 years since I was diagnosed and things have not changed when it comes to diagnosis, or should I say, failure to make the correct diagnosis. My optician found the swelling behind my eyes, after my GP had misdiagnosed me a full year before with migraine.

The medical practitioners have access to alsorts of medical sites, where there is information and medical journals for them to read, so I find it inexcusable they don't take advantage of them. We aim to change this, which is why we are conducting adult and childrens surveys on their diagnosis process, where our findings can then be presented to the necessary medical associations etc.

As to convincing your GP, you need to remind him of your initial diagnosis of IIH, and that your symptoms have returned and that you have done your own research, and found that it is documented that you can have IIH without any papilledema. You could print off the information that the links in this topic to give him, as the IH Research Foundation are the leading authority on IIH.

Information to give to your GP

Your GP will only have limited knowledge on IIH, and as you have had experience with symptoms before, he should be taking you more seriously and at least referring you back to Neurology. Don't take no for an anwer when it comes to this, and insist if you have to that he refers you for an LP at least, because if it is raised pressure, which it sounds like, it needs dealing with before it starts to affect your vision.

Let us know how you get on and if there is anything else we can do to help you.

Heidi

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Sophiasmom
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PostSubject: Re: Hi I'm Sarah and I was diagnosed in 1993 and didn't know it could come back again!   Sat Nov 10, 2012 7:55 pm

Dear Sarah;
I am so glad you have gotten some courage and motivation from our site. keep coming back because we are always here. no one else really understands what we go through so we are our best support.

I have to point out that you did quite well in your 30s but in your 40s you are crashing again. sounds like you lost weight and that helped this condition for you earlier. did you gain weight again? or is your weight stable? I just think it might be important to think about the possible contributing factors. I have seen so many of my friends get sick in their early to mid 40s, as if there is a hormonal change or something else that happens that pushes their own genetic predispositions over the edge into illness. for women, perimenopause is a big trigger, I think. we think of estrogen going down but really we become estrogen dominant because progesterone drops first. I have found significant improvements with supplementing progesterone. AND, it has been shown to decrease brain edema. high estrogen states definitely cause problems for IIH. something to think about and consider asking your docs. you might have to go to a natural hormone doc for this. I definitely would not take synthetic hormones. a recent HRT study showed that in contrast to the prior studies, the natural bioidentical hormones were protective. and btw, with progesterone they usually cycle it with your periods (luteal cycle only) but I found I have to take it nightly or I crash. it did not cause any problems for me doing this.

Deb
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Hi I'm Sarah and I was diagnosed in 1993 and didn't know it could come back again!

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