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 New to the forum. Looking for any advice and helpful tips :)

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JessG26

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PostSubject: New to the forum. Looking for any advice and helpful tips :)   Tue Sep 05, 2017 9:51 pm

Need to the forum and was keen to join to read other people's posts etc maybe learn more for myself.
I was diagnosed with IIH in February 2017 aswell as papiledema. This came abouts after not having regular 2 yearly eyesight tests for 5 years. Went for my long awaited eye test in January 2017 (I already wore glasses for long distance reading a d driving but very weak) and after noticing differences in the back of my eyes referred me to the hospital ophthalmologist. They then referred me to AMU for a lumbar puncture after noticing the pressure was high behind my eyes etc. And had mri & ct scans too.
The consultant diagnosed me with IIH after the pressure from my lumbar puncture came back higher than normal (around 32.5 even though he said it is probably higher but he has used too small a needle for my back to be kind and it has been 50 mins of waiting for the CSF to slowly drip out so we called it a day). The consultant did remove some CSF bringing it down to 16 to avoid low pressure headaches. Instantly I felt a relief, I never knew all the symptoms I was feeling before my eye test was anything to worry about. I would bend down and feel a lot of pressure in my head and upon standing back up or sitting up I would get white milky vision blinding me for a few seconds along with feeling light headed and dizzy. I had issues with a stiff neck, suffered with horrible debilitating headaches that I couldn't get rid of every few days. I also was very sensitive to light causing me a lot of eye pain and my vision had got more blurry over the last 5 years since my last eye test. I was diagnosed with under active thyroid a few months before hand and been taking medication for it so I thought all the symptoms could have been related to that.

I was put on acetazolamide 250mg twice a day and sent on my way. After 2 weeks I started to feel the symptoms slowly but surely come back. I was onky given a 2 weeks course of acetazolamide after my l.p so the symptoms started to come back then.
I met with the ophthalmologist again 3 months later my pressure was still higher than normal behind the eyes but he he was useless and just said we will leave it to your neurologist who I was seeing 2 weeks later. He prescribed me with more acetazolomide.
My symptoms come may were back to normal, met with my neurologist who I have to say completely shocked me and let me down. He was so bad I broke down in tears in front of him during the appointment which I never usually do because I was explaining how I didn't want to sit through repeated lumbar punctures and telling him about the related symptoms and all he did was laugh at me and shake his head and say short term memory loss, speech difficulty etc is nothing to do with IIH. Him laughing at me made me feel so small and silly I asked him how many patients he had seen over the years with IIH. He stumbled upon his words then saying only a few cases over many years. Which proved my point...he didn't actually know much about this neurological disease and the he was laughing at me when I spoke about the symptoms I was struggling with.
Now I am very overweight, I am 26 years old and have 2 young children. I am 5ft 2 and weigh 17stone so I do need to lose about 7 to 8 stone to be classed as healthy in the professionals eyes (rolling my eyes as I'm typing this!). I did have scans and see an ear nose and throat specialist about 3 and a half years ago as I was suffering with severe pulsatille tinnitus for 8 months. It calmed down and I onky had the tinnitus when ill, stressed and in bed. I never knew all of this was linked to IIH as I had never heard of this before myself till I was diagnosed.
The neurologist told me to up my acetazolomide to 3 times a day and do vigorous exercise and lose some weight. I walk up and down hills for 3 to 4 miles a day 5 days a week and I feel dizzy and light headed and nauseous just speed walking let alone not being able to tolerate any excersice harsher than that! With my thyroids struggling to be controlled with different doses of meds being adjusted all the time I struggle to lose my weight too! I have been on tablets for weight loss from my GP which were of no use and caused trouble as I have mild IBS too.
I have been waiting 4 months for a date to see a dietician after a referal from my GP! I was told to discuss weight loss surgery with my GP and neurologist by the consultant that did my lumbar puncture but they weren't having any of it.
Now my symptoms are really bad my eyes feel bad I'm not due to see my ophthalmologist till October and still awaiting my 2nd appointment with the neurologist who I would much rather be a different person than him seeing as he was useless! So that could be a few months yet.
I was told I should go straight to a&e for another lumbar puncture of I got the milky vision again which I have had for a few weeks now but with 2 children and struggling to find childcare with my partner working full time it's hard to juggle and I'm pushing my health aside for them which I know is silly of me.
I will be going for the lumbar puncture asap as my symptoms are terrible I'm sick of feeling dizzy and faint all the time, my eyes are terrible, my speech is getting worse, I'm just all over the place and the onky people who understand and care out of a huge family and a few friends are my fiancee and mother :(.
Just don't know what to do as I'm not sure this is all weight related as I was a few stone lighter when the tinnitus and eye sight started! I'm worried when I lose the weight it won't go into remission like they are promising. Any help and advice would be greatly appreciated! Also would anyone say there is a hospital that works really well with IIH patients and knows their stuff? Would be interested to know!
Thank you for taking the time to read my essay Smile
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JessG26

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PostSubject: Re: New to the forum. Looking for any advice and helpful tips :)   Tue Sep 05, 2017 10:00 pm

Also i am struggling to constantly take the acetazolamide tablets now. Even with a pill crushed or taken with yoghurt etc. I've always struggled with tablets since young and needed liquid form for a lot of anti biotics and pain relief. I have tried different methods to sealloeomg the tablets and luckily the first few months i was great taking the acetazolomide till recently I just gag to try and swallow it so haven't been able to take them as often. Has anyone had a liquid version before or alternative?
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Sophiasmom
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PostSubject: Re: New to the forum. Looking for any advice and helpful tips :)   Wed Sep 06, 2017 1:40 am

my son can now swallow the Diamox split in half, but prior to that I was able to crush them and mix them in honey and he took it fine.  will try to write more later.  it does sound like you need to lose a lot of weight.  in your case it may really make a difference.  I don't know what a stone is but if you have to lose that much in comparison to your current weight then you should do it.  when you are very overweight you are more likely to have obstructive sleep apnea which can cause IIH by itself.  in that case I think I would seriously consider weight loss surgery.  the problem with taking pills could suggest a small airway which would be seen in OSA.  if everything is small back there it produces swallowing difficulties.  for me it was all about that even though I was still very sick when I was thin.  I got better after jaw surgery which pulled my tongue out of my airway and away from my jugular veins.
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medmisfit
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PostSubject: Re: New to the forum. Looking for any advice and helpful tips :)   Mon Sep 11, 2017 6:03 pm

Hi Jess, welcome to the forum! It does seem like you have typical IIH symptoms and are getting the appropriate treatment. Unfortunately, IIH is a rare disease and we end up educating our providers more times than not.

I think they are taught to focus on weight because the largest demographic of people affected by IIH are overweight women of child bearing years, but it affects men, women, and children of all sizes. Losing weight has helped some members, but not all. I actually gained over 100lbs after diagnosis. I have exercise intolerance and thyroid issues, so completely understand your concern and frustration. All I can say is do the best you can to eat healthy, fresh foods and do low impact cardio exercise, like your walks, as tolerated. Everyone seems to be a little different, but I do best with a plant-based diet and no processed foods. I'm not always successful, but at least I know what to try once my symptoms start acting up. You may want to start a symptom log to see if you can identify any triggers or patterns. I add food, medications, activity to mine, but here's an example from our Useful Guides and Printouts section (http://www.ihaveiih.com/t59-i-have-iih-symptom-log).

As far as the surgery for weight loss, you'll have to discuss the benefits and risks with your physician. If you have a primary or family physician that you trust, I would start there. We always encourage members to be as healthy as possible, but surgery isn't best for everyone. I know that one surgeon recommended it for me, but my supportive service providers like my primary care physician, neuro-ophthalmologist, physiologist and nutritionist all thought that it was a bad idea. When I got 2nd and 3rd opinions from other surgeons, they also disagreed. There are risks and side effects that can be worse than the condition they're trying to treat, so it really depends on your health and history.

The biggest risk with IIH is losing your vision, so I wouldn't put of the ophthalmologist. If you don't feel supported by them or the neurologist, then get a referral to someone new. Your vision can be restored in some cases, but can also cause permanent damage if ignored.

Check out the forum posts and let us know if you have any further questions or concerns. We'll do our best to support you through this process.

Take care,
Julie
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