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 I JUST NEED HELP!!

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mcleod80
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PostSubject: I JUST NEED HELP!!   Thu Feb 07, 2013 12:53 pm

Sorry for the following long post, but here goes.........
I was diagnosed with IIH last July. Since then I have had 4 LP's and not once has the pressure been under 30.
I lost my job last month after being declared medically unfit to work.
I struggle to care for my very active two year old son.
I'm under the care of a Neurologist who has tried me on various meds which have not worked and I'm currently on a combination of Diamox (500mg x2 daily) and bendroflumethiazide ( 2.5mg x 1 daily.) I last saw him in December and even though he wanted to see me again this month, I'm currently on a waiting list just to get an appointment and I've been told this may not be until march/april.
Here's the thing.........
I went to the A&E yesterday as I know the pressure has again creeped past my tolerance levels and I'm in sooo much pain. The hospital refused to admit me, telling me to come back at 9am today and they would do an LP.
I arrived at 9am and eventually was spoken to by a Neurologist who did the usual tests of checking optic discs etc. He then proceeded to tell me that as only my left disk was swollen, and not greatly so, that he doubts that my pressure is "sky high" and also since I've not suffered "significant" visual loss that I may not have high pressure at all. He seems to think that my symptoms (mainly morning vomiting and pain in my eyes) lead him to think that I may have "migranous tendencies."
He has refused to do an LP, saying he'll try and fit me in at the out patient clinic "sometime", but in the meanwhile has given me a prescription for amitriptyline to help with the MIGRAINE. He told me to carry on losing weight (2 stone lost since Oct) as that will be a cure........go home.

I just feel like screaming NO ONE IS LISTENING TO ME!!!
I don't live, I exist.
I've lost my career, I pop pain killers like sweets, I can't get on the floor and play with my son, some days I can't even pick him up. He's started to pretend to be sick in the toilet and now says " leave me alone, bad headache." Hearing him say this just kills me, it makes me die inside to know that this is how my son sees me.
I'm trapped with nowhere to turn.
I would like to be able to speak to a Neurologist who actually KNOWS this condition and all the little peculiarities it has, not just someone who read about it once and thinks he knows the subject, but how do I find this person? I know it's my right in the UK to choose where I'm treated, but how would I know I'm going to see the right person and not just some other misinformed idiot?
Can anyone recommend a good Neurologist?

Thanks for taking the time to read this.
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DMajorly
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PostSubject: Re: I JUST NEED HELP!!   Thu Feb 07, 2013 8:02 pm

I am so sorry! :( I know EXACTLY how you are feeling, I had a similar experience when the NS sent me to another eye doc and she didnt see what my normal eye doc did.... put my surgery on hold while i had to get a bolt put in my head to meassure the pressure for three days to prove it to them all...
I am so sorry, its a horrible feeling to be put on the back burner and left to just deal with it however you can. I am not sure of a good doc out your way, but my advise to you is just please dont give up. Its so hard and people treat you like you have a made up illness just becasue we dont look sick.... dont give up. Keep making appts, if they make you wait and wait call every week to check on cancelations just keep fighting somoene will help.
I know what you mean when you say you dont live, you exist.... :(
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Heidi
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PostSubject: Re: I JUST NEED HELP!!   Thu Feb 07, 2013 8:08 pm

This seems to be cropping up more and more lately and it's very frustrating. I can't say in the past that I was ever told that when I was having recurring symptoms and there was no threat to my vision, but I'm beginning to see that there are particular hospitals around the UK that seem to do quite alot differently. To my mind they should all be working from the same page when it comes to IIH.

I would contact PALS and ask them to help you be referred to a Neurologist who is experienced with treating patients with IIH, as you are not happy with this one, and explain why.

I live in South Yorkshire, and where I am treated, they have a clinic especially for IIH patients, which makes a huge difference. They have been fantastic managing my IIH and the doctors all have a very decent knowledge of IIH. Try contacting our Partners the Brain and Spine Foundation as they may know of a Specialist in your Area. It's worth asking as they are all medical professionals.

I've managed to find a Neurologist, Dr Fayyaz Ahmed who is a Consultant Neurologist/Clinical Director at the Neurosciences Business Unit, Hull and Yorkshire Hospitals NHS Trust, Hull Royal Infirmary, Hull. He is also a Trustee of the The Migraine Trust, I don't know if you've seen him but he might be worth looking into.
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mcleod80
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PostSubject: Re: I JUST NEED HELP!!   Thu Feb 07, 2013 10:08 pm

Thank you guys!!

It's such a small world Heidi....I live in Hull (someone has to!) and Dr Ahmed is my Neurologist!!
It's not particularly him I have complaints about, it's getting to see him that's the problem. it's also the OTHER Neurologists who I see when I go to hospital via the A&E or AAU. They tell me that Dr Ahmed isn't on duty or is busy on ward 11, which I understand, but they're the ones who are questioning my diagnosis, telling me it's only a migraine and refusing to do an LP. They block me from even getting admitted. How do I get them to give me the treatment I need? No one loves having an LP, I shake during mine, but I know this is what i need. I need to have one to get drained down as far as the Dr's will allow, thus giving me at least a few weeks of a semi normal life before the pressure goes past my tolerance point.
I also feel that to be medicated for life just isn't an option. I want to be able to have more children and every journal I've read on the subject states that Diamox and Toparimate are very dangerous during pregnancy, plus the fatigue from the Diamox just kills me! I cant keep having LP's every 6 weeks for the rest of my life either, I know the associated risks.
I feel like chaining myself to the desk next time I (eventually) get to see Dr Ahmed, as my last appointment wasn't even with him but with Vicky the headache nurse! I was so disappointed I burst into tears, I had so much to ask and talk to him about!
Do I just put my foot down, I hate confrontation! [You must be registered and logged in to see this image.]
I suppose it's back to waiting again..............*checks post, still no appointment letter.
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Heidi
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PostSubject: Re: I JUST NEED HELP!!   Thu Feb 07, 2013 10:29 pm

Definitely contact PALS at your hospital and tell them all this and they will be able to help you. Years ago I was in a similar position myself, when my then Consultant wouldnt see me personally, because he said that my headache was due to stress because I'd had an MRI scan that month. I immediately contacted PALS who got me seen within 48 hours. I had my LP and he had to concede and apologise because it turned out my pressure WAS high.

Whenever I've had a problem I've contacted them and they've always been a great help. It's what they are there for really. Make a bullet point list of all these things so you can tell them, and also explain how stressful and upsetting it is for you, having to go through this all the time. Hers the information for the one you need [You must be registered and logged in to see this link.]

Please let me know how you get on. for you
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Wylee
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PostSubject: Re: I JUST NEED HELP!!   Thu Feb 07, 2013 10:38 pm

What a relief that you and Heidi share the same good fortune of having the same doctor, now, to get you in to see him!! I am sure Heidi will be able to offer more suggestions to you, but I would think that contacting PALS in the meantime might be of help. Do make certain when you do finally get to see Dr. Ahmed that you find out how to be able to see HIM again, and quickly, when you need to.

Perhaps the Amitriptyline will help, I use that along with Gabapentin and Diamox. I have Post Herpetic Neuralgia (PHN) from the Shingles, but it seems that Amitriptyline helps with depression (who wouldn't be depressed dealing with what us IIH'ers have to deal with) and the headaches. I hope it will help you too.
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