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 Danielle diagnosed September 2012

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Dan_Robbins
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PostSubject: Danielle diagnosed September 2012   Tue Oct 02, 2012 8:08 am

Hi all, well I'm a novice at this and of my illness! Before being diagnosed I had never heard of this before so to be honest it didn't really terrify me, but the past few days I have felt more scared about the upcoming months/years. I am not one to ask questions, I don't want to feel like I'm being a pain when the doctors are rushing around seeing to a million other patients. The 4 days I spent in and out of hospital before being diagnosed was worrying especially waiting for the MRI scan results, don't think I have ever felt so scared. (luckily I have an amazing sister who was by my side).
I found this forum whilst researching up the illness, and wondering why I was having horrible side effects. I have tingling in tips of fingers, toes, knees, lips and head. Pins and needles at least 5 times a day in the soles of my feet, total loss of appetite, feel sick (not terribly) eyesight seems to of deteriorated, and obviously the headaches (owww)! Im only on 250mg of diamox, which after reading some of your posts, seems quite a low dose. My doc has given me 30/500 co-codamol for the pain, which give me constipation and I have heard they are very addictive so trying to cut those down to when the pain gets unbearable so I am on 6 of those a day instead of 8, hoping to cut those out altogether...what are the chances?! I have more blood tests tomorrow and my doc is chasing up the neurologist for an appt,. My questions are....What can I expect from the first visit with the neurologist, what are the chances of me having to have another LP? I just don't know what to expect from now on, and would love to hear any stories (no matter how bad) I just want to know what to expect. My family are being great, I have a 12 year old son who is just a god send, and he keeps asking questions that I don't have the answers to. I have told him that I may have to go back in hospital a couple of more times but it will be fine and I will be fine. I just don't know what to expect. Please help. Thankyou in advance.
Danielle
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pennyroyal
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PostSubject: Re: Danielle diagnosed September 2012   Tue Oct 02, 2012 3:20 pm

Hi Dan,

Welcome Smile It's really hard to know what to expect at this stage. My advice would be to make a list of questions for your first Neurology visit. Download a symptom log from this website - fill it in and take it with you. I found that I forgot to ask half the things that I wanted to know and then it was 6 weeks before they saw me again. Take a list and tick them off as you ask them. I think you will know much more after your first visit and it will be easier to make plans.

As for the Co - codamol - it is possible to come off them. I found that I took so many of them I ended up with rebound headaches. I have stopped taking them altogether now. There are lots of other pain killer options.

Everyone's journey with IIH is different so its hard to give you a definite as to what to expect. What I can tell you is that you have found one of the friendliest forums I know with some of the most knowledgeable folk. This place has helped me in some pretty dark moments and I'm sure they will be of support to you too.
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GemmaC
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PostSubject: Re: Danielle diagnosed September 2012   Tue Oct 02, 2012 3:40 pm

Hi Dan,

Although I am 12 months down the line I still feel that I am at the beginning of my IIH journey as nothing seems to be working for me however don't let that freak you out! I've read plenty of positive things from other people in terms of medication that they respond well too.... Guess I'm just a fussy so and so!

I have only just started a symptom diary- too disorganised and really wish I'd done it sooner! You may find that you get asked the same things over and over again!

Keep your chin up! I've had lots of good days in the past 12 months!
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Dan_Robbins
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PostSubject: Re: Danielle diagnosed September 2012   Tue Oct 02, 2012 5:55 pm

Thankyou, both of you. I will download the symptom checker, I spent alot of time on this this morning and noticed alot of things I could download for my family too. I fell ok in my self part from the obvious headaches and side effects but just hard to put into words the angst! Thankyou again for replying and will start on that symptom checker and a diary I think to record when pain attacks happen and where. Co-codamol is not working for me I will talk to my doc again tomorrow. Hope you 2 are well today x
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lizzie793
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PostSubject: Re: Danielle diagnosed September 2012   Tue Oct 02, 2012 7:59 pm

I was diagnosed in May this year after a visit the optician found my optic disc s were swollen. I totally understand how you feel as I ended up having a lumbar puncture MRI scan and a CT scan. I was on 1000mg of diamox a day and the side effects were horrendous. I had pins and needles, loss of appetite , tinitus , hearing loss, and loads more. I only needed one lumbar puncture my vision cleared significantly after that and the diamox continued to help with that however my nurgeologist decided in July that I would benefit from a change in medication and suggested I try toprimate as it also helped the headaches and people tended to tolerate this medication better. It took a lot of soul searching but realising that I probably wasn't going to get back to work if I carried on taking the Diamox. Thankfully I made the right decision I have not had any of the nasty side effects you can get with this drug and the effects I had whilebon Diamox have all gone. I still suffer headaches but they are greatly reduced and it tends to be when I overdo it or am tired have jusbeen told that the swelling is slightly better in my optic discs is slightly better and although I still have my off days I have been able to go back to work. So what I will say it is a long journey and I think you go through so many different emotions I know I have but try to stay positive and if you font think the medication is for you there are alternatives that is what has worked for me and hopefully when you see the consultants they Will be able to sort out an appropriate treatment plan for you. I am under a nureologist and an Opthamolgist.
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Dan_Robbins
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PostSubject: Re: Danielle diagnosed September 2012   Wed Oct 03, 2012 12:02 pm

Thankyou Lizzie, needed to read that in a way today! Feeling really awful today! My dad keeps telling me to get a sicknote from the doc but I need to work you know? I need to feel 'normal' But today I just dont!! My head feels like its gonna pop off my shoulders and Ive noticed my memory and concentration is really bad! I convinced myself it was january 29th last night and panicked as I thought I had forgotten someones birthday until my son reminded me it was indeed oct 2nd! I got into such a state over it. I was in bed at 8 last night - before my son, and still feel so tired! Thing with this is people dont see the symptoms so its hard to explain. I think right about now I would rather loose a limb than put up with this anymore. :( Thankyou for all your thoughts and advice though.
Danielle x
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lizzie793
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PostSubject: Re: Danielle diagnosed September 2012   Wed Oct 03, 2012 2:41 pm


Its early days with the illness and the drugs as well. The Diamox made me feel really tired there were times when I couldn't even stand up and sometimes I didn't have a clue what I was doing. People were telling me how well I looked because it is not something physical people assume it is very hard to tell people how you feel. I have found that I know when I have done too much and I am able to work round it now doing thing in little bursts as much as I can. It is very early days yet and you need to take things slowly I was exactly the same I couldn't get used to going from being someone full of beans doing loads with my boys to hardly being able to read a book with them. My two have been great and they are happy to sit and watch a film with me if I am not having a good day your son sounds wonderful too. I understand you feeling the need to feel normal but some time off work may help I ended up being off just over 4 months but I work with computers and couldn't go back till they were happy they had all the appropriate equipment to help me. It may give you some time to adjust to the tablets etc and get your head around the illness. I hope that this is helpful and I know how hard it can be. If you need anything else please ask.
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Wylee
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PostSubject: Re: Danielle diagnosed September 2012   Wed Oct 03, 2012 4:45 pm

Hello Danielle and welcome2

It sounds as though you have some docs who are staying on top of everything. That will be very helpful.
Do you recall what your opening pressure was? Although there is a zone of "normal", we have found that each person actually has their own "normal" ICP. My opening pressures were between 22 and 24 cm of water. It seems that my body likes 12 and lower. Right now my lp shunt's valve is set at 10 cm. I am looking into lowering it again, to 9 and see how that goes. My docs are very attentive and willing to try most anything to help me to feel better. And that is half the battle. Having these good docs is wonderful. They are keeping the hope alive that I will not only get better, but will get well. And wouldn't that be nice. I hope you are able to find the same.

I have also found that the meds as well as the IIH increase the fatigue. If you feel you must work, do little else. Have someone else help with the chores. Get as much rest as you can.

Please do have a good look around the forum. So much good info here.
Looking forward to chatting with you.
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BananasMom
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PostSubject: Re: Danielle diagnosed September 2012   Thu Oct 04, 2012 1:56 am

Hi Dan! Very Happy Sorry I'm a little late welcoming you to the group. It's great to have you with us.

I agree with what others have already told you about Diamox ... it's a tough drug for your body to adjust to in the beginning especially. I've experienced ALL the side effects you talked about, to some degree, over the past almost 3 years that I've been on Diamox. But my body has adjusted some as time has gone on, and also I've just adjusted to dealing with them in some ways, I guess.

Recently, a new doctor switched me from the tablets to the extended release version of Diamox, and I think it MAY be helping somewhat with the side effects, especially the up-and-down fatigue stuff all day. Then again, I've had some bad days too, so I'm not sure. LOL Sometimes I can't tell if it's the meds or the IIH itself giving me trouble.

*hugs* Glad you found us and please let us know if we can help with anything.
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Dan_Robbins
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PostSubject: Re: Danielle diagnosed September 2012   Wed Oct 10, 2012 7:06 pm

Thank you all of you, your kind words lift me. My opening pressure was 35, the doc said it should be between 18-22. I went back up the eye clinic today and my eyesight is decreasing, they want me back in 4 weeks. He told me to chase my doc to chase the neurologist. Just so tired all the time. Turned down 3 invites to parties in last 6 weeks, i feel like a recluse ha! Just want to see the neurologist and the other LP to see if there is any change -here's hoping!- I dont think there is though. I tell you the one thing I really really miss is reading a book! Haven't been on the computer for a week to see if it helped my headaches, and it doesn't so here I am !!
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Wylee
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PostSubject: Re: Danielle diagnosed September 2012   Fri Oct 12, 2012 4:03 am

Danielle, that 35 is quite a hefty number, no one can deny that your pressure is elevated.

If your eyesight is getting worse, you really need to stay after the whole process. Don't let your docs pooh pooh you (I think you Brits call it being "fobbed"). Make sure they keep a close eye on you, change your meds (increase the dose or try a different one).

Reading a book or the computer can be extra painful when your eyes hurt, so please, don't overdo.
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Dan_Robbins
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PostSubject: Re: Danielle diagnosed September 2012   Fri Oct 12, 2012 8:36 am

I know, i need to grow a back bone and ask more questions and demand more answers, and ask to try more things. But the honest truth is I just don't understand any of it. Im so confused, this has totally knocked me for 6, confidence has took a nose dive. I need to get back to my old self and clear my head (parden the pun) !
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