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 Wendy- diagnosed 2009

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WendyR
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PostSubject: Wendy- diagnosed 2009   Mon Sep 12, 2011 11:46 pm

I am new to any kind of forum, so please bear with me. I was diagnosed with IH in Sept of 2009. I have had one spinal tap and been on Diamox ever since. I have seen significant improvement in my eyes (the swelling has completely subsided - thank goodness), and the white outs are completely gone. Things are being managed by the dr.'s somewhat. They can't really help me all that much.
I have sporadic headaches, and I am starting to think that I don't have as severe a case as many others. But then I have days where everything hurts and I can't get out of bed. I think the biggest issues I struggle with regularly, are extreme fatigue, severe aching pain in the neck/arms or back, and the tingling from the Diamox. I also suffer from bouts of depression, but it seems to be mainly because I get so tired so easily and I am so limited in what I can do. I was recently laid off and looking back, I don't know how I was making it. I was so tired all the time. Now I don't know how in the world I will ever work full time, but I hope I can again. I am on my own so I will have to work at some point soon. I have migraines at times too, and was told they are a completely separate thing, but I'm not convinced as I didn't have them before.
I also have questions about this - concerning women only (men I apologize) but is it just me or do your symptoms seem to flair up around the time of your menstrual cycle? This can completely take me down and does most times. I will feel terrible for 2 to 3 days for no apparent reason, and then... oh. That was it. If you have this issue would you please let me know? Thanks for reading. Glad to have a place to speak about it.
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Heidi
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PostSubject: Re: Wendy- diagnosed 2009   Tue Sep 13, 2011 2:27 pm

Wendy welcome to the group hug. You've certainly been through the mill, but now seem to be on the right track, as your vision has shown improvement. I know how hard it is struggling with both the illness and side effects from the Diamox, and in some cases the side effects do settle down after awhile, but if they dont speak to your doctor about an alternative.



After speaking with many people with IIH, there is a common thread of some type of migraine, the common ones being during bad weather (Barometric Headache), and of course your menstrual cycle (Menstrual migraine). These seem to be the times the headaches feel worse, and seems to aggravate the pressure. You're not on your own with experiencing them at those times.



The tiredness is caused not just by the medication but because your body is fighting against pain most of the time, and high pressure causes this as you now know. This means that you have to adapt your lifestyle unfortunately, but it does help to tweak things here and there until you find a balance in what you can and cant do. All this being said is what leads up to feeling low and depressed, which is perfectly normal because you have had a massive disruption to your life. IF you feel that things are getting harder to cope with emotionally, it might be an idea to speak to your doctor, and nip it in the bud before you spiral down.



We have lots of helpful booklets on coping with fatigue and headaches etc, which I think may be very helpful to you. Also dont give up on working, and check out our link Advocacy for Patients with Chronic Illness, Inc Most of all remember you are not alone and we're here for you hug



Heidi


Last edited by Heidi on Tue Sep 13, 2011 8:20 pm; edited 1 time in total
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PostSubject: Re: Wendy- diagnosed 2009   Tue Sep 13, 2011 8:02 pm

Thank you! Yes I have those menstrual migraines. And I have been taking anti-depressants as needed. The side effects did settle down some. We had to tweak dosage to get a balance. The first 5 months were unreal...

My energy levels will rise at times and I think "wow, I'm doing a lot and not feeling bad". Then, sidelined. Yes that is the hardest part I think. I get used to all this, but I think it is a downer to know it may always be this way. I love your comment on your profile from Emerson. It is very encouraging and thank you for putting it there Very Happy

Thanks for the reply and the resource link. I really do need to research this more so I know how to deal, and even to explain to others who cannot fathom what is going on with me. Sometimes I can't either LOL

Regards,
Wendy
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PostSubject: Re: Wendy- diagnosed 2009   Wed Sep 14, 2011 11:06 pm

Hi Wendy and big welcome to the group!

I also feel terrible a couple of days before my cycle and during and I think its due to the hormones, I know a lot of women suffer from this and your not alone. hug

I'm glad that your IH is being managed some what through Diamox and that you have managed to get some eye sight back xx
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PostSubject: Re: Wendy- diagnosed 2009   Thu Sep 15, 2011 12:07 am

Do your IH symptoms go crazy before/during? That is what happens to me. It was never that way before I had this. Yes my vision black spot has actually shrunk (praise God) and the Diamox works - most of the time I would say. Sometimes it seems nothing works lol. Still this medication is so awful. I have no idea what it will do to me long term. Liver/kidneys I suppose? And I can't enjoy an ale anymore - due to the carbonation tasting horrendous. But that has been good for a little bit of weight loss ;)

I've also noticed a great deal of you guys are in the UK (on here and on IHRF FB wall). Is it that there is more awareness abroad, or a higher rate of the disorder? Both?

My main issue on a regular basis is the fatigue. That has been the hardest thing for me to come to terms with. I am so grateful for the resources here and I found that article on fatigue and neurological disorders. It really helped me to understand more of what I was dealing with in my own body. It had been a puzzle for a while even though I had gotten used to doing "bits" of things and knowing I can't do any more. Giving up alcohol pretty much altogether, changing my diet, trying to hydrate (because it's needed plus the fact I'm on a diuretic). Little things that you just adapt to as time goes on. still it has been a challenge to deal with emotionally. I'm so happy to know it wasn't just me. - not that I wish this on anyone, but you know, I thought something was really really just wrong with me - and it is, but to know it is common in the condition and that I wasn't some crazy person.

Thanks again for this group! I'm happy to have it and thank you for welcoming me and keeping the positivity alive.

Wendy
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PostSubject: Re: Wendy- diagnosed 2009   Thu Sep 15, 2011 12:46 am

I think that because we are a smaller country we dont have as much awareness as you'd think and I think we rely on research done in America, the ratio of sufferers in the UK are probably the same ratio for the USA for their sizes.

I have to admit I rarely drink alcohol now, but I do stick to drink that arent gassy when I do, especially as alcohol causes dehydration and being on diuretics it's better to be cautious. Although I've found drinking an equal amount of water to the alcohol consumed helps a great deal.

I'm glad the leaflets are helping you and you are feeling happier knowing you aren't alone. Feel free to PM me anytime should you need anything. hug
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