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 when is it gonna end?

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mum14
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PostSubject: when is it gonna end?   Sun Sep 12, 2010 3:26 pm

hey everyone Smile
i was diagnosed in feb this year after noticing for 2 months that i would loose sight in my left eye for about 10 seconds after standing up, i had an MRI and then a HORRIBLE LP which landed me in hospital for 5 days before i got a blood patch and was feeling so much better! i had a whole lot of other test done and it took a good 8 weeks before i got a an answer, at times i thought i may as well just move in to my doctors office i was seeing her so many times a week lol.
So after all that i was put on diamox, 4 tablets a day, but i could never manage to take them all i was already feeling crap and they made me feel so much worse, i saw my neuro 6 weeks later and there had been a huge improvement, the pressure on my eyes had gone down so much i was actually on the graph! i was so relieved. It has been 10 weeks since ive seen my neuro and im scheduled to see her next week but im freaking out because i haven't been taking my tablets, ive only been able to manage one a day before i go to bed, im so angry at myself everyday for not taking them as i know they were working. i have a 5 year old daughter and 2 year old son and i was unable to be the mother they deserved while on the meds, its just such a horrible feeling, the pressure in my head and face, the sharp tingling pains in my feet, the confusion and dizziness, the nausea, loss of appetite EVEN though im hungry, i just cant do it anymore!!! NO body understands what i go through, and a lot of the time it seems like no body cares :( it feels like everyone is is sick of hearing me apologise for not doing this or being able to go here or there because of this condition. i DONT want to whinge about it and i try not to but i also cant lie about how i feel every single day! my sight is getting worse, i can no longer drive at night and i see a lot of things in 3D. My memory is beyond shocking im 24 i should be able to remember to reply to someones text! sometimes my speech slurs or mid sentence i have no idea what i was talking about. im just SO OVER IT ALL!!!!! And i know im making it worse by not taking my tablets but i just cant keep up with life feeling any worse then i do. is there any other tablets my neuro might suggest? or anyone got any suggestions on how to get by day by day? im sorry ive gone on and on whinging but this seems to be my only outlet, a place where people know how im feeling! it seems like the path to remission is just getting longer and longer :(
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Laura
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PostSubject: Re: when is it gonna end?   Sun Sep 12, 2010 6:39 pm

Hello, welcome to the I have IIH forum, I'd firstly like to say don't apologise for going on, we all won't see it that way as you need to get it off your chest and this is the best possible place for it as we will support you! It's what we're here for.

I'm sorry you're having a rough time with this illness but it does get better to deal with in time once you are used to the ups and downs of IIH, however hard it is though to adjust to taking regular medication, you must if it is working and your Dr has told you to. It will do you a world of good in the long run. If you're forgetting to take it, a good method my mum uses herself is setting her alarm every few hours at a specific time for her medication, so you don't forget and you will take it at the same times throughout the week and so on.

I know it's frustrating for you not to be like your old self and do some of the things you used to, but once IIH is properly controlled you will start to be able to do things little by little and get some normality back.

My advice to you for getting by day by day would be to get how you feel off of your chest whether it be here or jotting feelings down, it will give you a clearer head once you have got those feeling out, and it will enable you to try and get a little more back to normality and do things. Just know you are not alone and you have all our support, we will always be here when you need us.

I hope so of this has helped you, even just a little, keep smiling and keep your chin up, it does get better!

Laura
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Heidi
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PostSubject: Re: when is it gonna end?   Sat Sep 18, 2010 8:10 pm

Hello and welcome to the group hug. I totally understand how you feel, I felt that way myself when I was first diagnosed over 2o years ago. At that time my daughter was only 8 months old, but I was told that I'd had it all through my pregnancy which is what triggered it.

I know it's such a shock at first because you go through the relief of finding out it's not a tumour or something worse, to finding out you have IIH and it's not curable. You are going to go through a lot of emotions very much like you would if you lose someone close to you. This is a perfectly natural reaction to it, and so when you feel angry or down come and have a rant or talk with us here, because getting things out makes it a lot easier than keeping it all in.

Taking your Diamox isn't going to work overnight, but it will in the long run help you to get your life back on track. Once your body adjusts to it, it will help control your symptoms and help to keep your pressure from going up.

I know you feel isolated at the moment, and it is harder when people don't understand, so you can always point them here or to the IH Research Foundation to read up on IIH, and encourage them to do so, because the more information they have, the more they will be informed and you won't feel so stressed.

Take each day as it comes, and pace yourself, and keep a diary of how your symptoms are, and also take note of when you do things how long they take you to do before you feel unwell or tired. Then you can adapt the way you do them. Read our guide; [You must be registered and logged in to see this link.]

I also want you to take comfort that YOU CAN have a better life with IIH, and bring back the normality you had previously. I was a single parent with IIH until my daughter was 8, I was on Diamox and I also worked full-time, so I want you to know that your life WILL get better, and you are not alone. We will help you every step of the way. It may feel at the moment that your life is crap, and I don't blame you for thinking that because of the way the IIH makes you feel, but you really need to take your Diamox as prescribed and give them a chance to work.

Also remember there is also a chance you could go into remission, so please don't give up hope, keep positive, determined and stubborn, because these will get you through. Trust me! We are always here for you hug

Heidi for you
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lizb1989
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PostSubject: Re: when is it gonna end?   Sat Oct 16, 2010 4:47 am


I am posting this blog because I have found very little information on pregnancy and Idiopathic Intracranial Hypertension also known as I.I.H. I am hoping (fingers crossed) that there are others dealing with the same issues I am because at this point I am feeling quite isolated in relating this to others who are tangible.

---> A bit about myself; my I.I.H and Pregnancy:

I am 21 years old, 19 weeks pregnant and was diagnosed last year in September of 2009. It was through a routine eye check up that they noticed my nerves were quite swollen after dialating my pupils. I was than sent to a specialist within the building who was very concerned and said I would need to have an MRI, CT Scan and lumbar puncture in order to figure out what was going on. Mind you at the time I was freaking out only coming in that day thinking I needed a better prescription for my glasses. He than referred me to an Opthamologist who diagnosed me with I.I.H and immediatly started me on "Acetazolamide", I was than scheduled to see him every week to monitor the pressure.

The lumbar puncture results came back and my pressure was double what it should be but on the scans they found no tumour but a "venous thrombosis". The lumbar puncture didn't heal correctly and I had to have a blood patch done. (horrific head pain might I add) A venous thrombosis is a long name for a blot clot within a vein, specifically mine was located on the left side of my brain in a central vein. The vein is in a tube shape and has not fully re-canalized yet but they said the blood had managed to dig its way through the clot and create a small opening. This not only creates MORE PRESSURE backing up blood flow. The only solution to date is to have surgery and have them insert a tube where the clot is I have been warned by my current Neurologist that it is a VERY risky procedure of course being pregnant now I cannot have the surgery nor do I think I will consider when the baby is born.

After months of getting the pressure under control seeing the Opthamologist I still had headaches, dizziness sensitivity to light, and sound etc. I was then referred to my current neurologist who could not pin point why this was happening and had no direct solution. I was just being told to keep losing weight (note I was only 40 lbs over weight from when I was healthy with no symptoms). At the time I saw my neurologist I was on "Tri cyclen" for birth control which I was immediatly taken off of and she was surprised no other doctor had taken me off of it as it was known to cause blood clots and one was found in my scan. A Few months later I began randomley collapsing many times after I would feel my body build up too much pressure. I was taken to the emergency room and they had no clue what was the cause and loaded me up with pain medication. NOT HELPFUL!?!?! That day we found out I was 1 month and a few weeks pregnant. SURPRISE! In the time between finding a new birth control that was ok for me to take between my regular doctor and neurologist I become pregnant in early June 2010.

As soon as I had found out I had to change my medication for I.I.H from "Acetazolamide" to "Topiramate" (also known as "Topimax") because it would not hurt the baby as "Acetazolamide" was known to be a much riskier medication. My neurologist prescribes "Topimax" to her patients mainly for epilepsy to control seizures but she has used this for I.I.H as well.

To date I am basically am a "Stay-at-home Mom to be", we are in the process of moving to a bigger place. I find the I.I.H to be debilitating many a days and find it hard to explain to others what I am going through. They either cannot empathize or it's incomprehensible, I find they forget to make room for exception as this is a tiring on-going medical condition.

Anyone relating out there???

<3 Liz
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Heidi
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PostSubject: Re: when is it gonna end?   Sat Oct 16, 2010 6:54 pm

Oh Liz , what a terrible time you've been having and I totally sympathise. I went through my pregnancy with IIH, although it wasn't diagnosed until 8 months after the birth of my daughter, so I know how it makes pregnancy all the more difficult. Topamax is often prescribed now as much as Diamox, one of the things that occurs with Topamax is weightloss.

Here is a link from our Informational Links section about IIH and pregnancy that I hope you find helpful.

[You must be registered and logged in to see this link.]
I know how hard it is for others to understand what you're going through, and how it affects your daily life. You could ask them if they have had a very bad headache or migraine, and if they say yes, ask them to imagine having it all day everyday with no relief from it. You can also tell them that having IIH, gives you similar symptoms to someone with a brain tumour, which is why it was called Pseudotumour cerebri, which basically means false tumour. I would also either recommend they go to the IH Research Foundation website, where there is lots of information about IIH, or print them some off and give it to them to read, or even recommend they join our group, where we can help make them more aware of what you're going through.

I had the same problem with friends,colleagues and family, and it wasn't until I had to have a shunt that they finally understood, but back then there wasn't the information on the internet that there is now, infact there was no internet. Hopefully the more information they get, they will start to understand how difficult it is for you, and that they too have to adapt to you doing things differently.

I know in time when they have all the information, and finally begin to understand it is the kind of illness, that gives you bad and good days, that they will give you the thought and support you need
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