Hi, was diagnosed with iih, since 1st May my life has completly changed, to say ive been fed up these past few weeks is a understatement, today i have been yet again in floods of tears, i really am so very down about this. This is the second day i have felt sick, woke this morning not feeling quite right and im fed up with looking at life from my living room come makeshift bedroom, where i look at the pretty neclaces hanging on the mirror i use to once wear, when i cared about what i looked like and when i actually bothered to get dressed and go out!!! I tried talking to my boyfriend, but he thinks im just having a bad couple of days, but my feelings of not wanting to be here anymore are going a lot deeper than just a bad day! im already on anti depresants, im at a point i just dont know what the hell to do anymore!

Lainy , the way you are feeling is a normal reaction to your life being changed by IIH, and I understand the position you are in at the moment, because I was like that when I had my very first shunt. I felt I couldn't make anyone understand and that it was me against it on my own because of that. I too cut myself off completely and wouldn't bother with makeup and all the things that made me me.

The antidepressants will help in time, but that's the thing, it will take time, so try writing down how you feel because it will help you get those feelings out, putting them on paper. Take each day as it comes, and one step at a time to putting yourself back together.

Start with putting on the things that you most like to wear and the same with the jewellry, you need to remember who you are when you look in the mirror. Maybe put on a little bit of make up and style your hair like you usually would even if you aren't going anywhere, do it for YOU. This illness is only part of you, it isn't who you are and that is what you need to hold on to. Inside you are still the same person, it's just that somethings have to be adapted to the IIH, and this can be done, but again one step at a time.

You can come here and vent as much as you like in Group Huddle, or for instance you can start an online journal here in Members Journals which you will find in the I Have IIH sections. It is locked for privacy so that it cannot be viewed online, only by the members of the Members journal group.

We also have the chatbox and feel free to PM myself or any of the Admin or Moderators on here to chat with you when we are all on the board, or any members.

We're always here to support you and listen to you. You are not alone Lainy

Heidi xxx

I'm sorry to hear you're struggling! It may not be helpful, but I can tell you that things can improve w/ the right treatment.

I know you said you were diagnosed in May, so I assume you're on some sort of medication..you may talk to your physician about side effects. Depression can accompany IIH at times. IIH is debilitating and isolating, but these feelings/symptoms can also intensify as a side effect of certain medications. I don't tolerate meds well, so tend to become agitated or depressed..it's exhausting and frustrating, but you can over come it!!! I would definitely start w/ your physician..anti-depressants take time to build up in your system, but they can also increase symptoms if they're not right for you.

You can always find support here, but you may also want to consider talking to a professional who specializes in chronic illness..it's new to you and you need all the support you can get! Surround yourself w/ positive people and things..family, friends, pets, music, jewelry, crafts..whatever helps. It's definitely an adjustment..trust me, we all have periods of mourning and become overwhelmed. Talk to your physician to try to find out what's causing it and make a plan. Look over the coping methods, guides, and print outs provided here..just know that you're not alone and it can get better!! If you need additional support, you can PM me or anyone from the Admin team, request a chat, or even a call..we'll do our best to get you through it.

Take care and keep us posted!

Julie

Thank you both for your very kind replies.
I would agree that i am very in mourning and realisation that Im not going to get better over night, I have not been to work since i woke up the ist May in so much pain, so i have all the worry of my future, my job and money, as i have 2 part time jobs i do not earn enough to get paid sick pay, so i have find out how i can get some help.
Some days i wake and i really do not feel to bad and my family want to do something, so i go out and end up getting sick, in pain and the even the car journey can make my head hurt so bad, this makes me anxious and most of the time i just feel safer doing what i know i can do, but i feel the pressure from my family and i can the disapointment when im bed ridden for a few days, not even being able to shower! ITs still very early on for me i know which is probably why im feeling like this?. I have been taking Citropam for 3 years now, since my mum died, there 20mg, so maybe i can increase them? the only side efffect im having is from Diamax which i take 1000mg daily spread over 4 times daily.40mg Furosemide and 40mg Propranolol twice daily, the Propranolol is a new tablet after my second LP. I have had 2 LP so far, the first was 26, the second was 23, there is talk about refering me to another Hospital now, just waiting for a apt to come in to see current Nurologist. I did not get treated very well with second ER visit, i was sent home twice as they said they didnt have beds, nursing staff for me, i was in so much pain and weak, i couldnt fight the fight, i felt awful having to explain myself, to plead for decent pain relief, to explain how you feel, how you just cant cope anymore, I have very bad piercing, pulsating Tins, which drives me up the wall!! I just feel a former shell of myself, all the things i enjoyed, I just can not do anymore, I have just turned 40 and a dog has a better life than me. Thank you for your kind words, it all makes sence, I will talk to my gp about how i feel, as it scares me sometimes.

Lainy are you in the UK? If you are have you tried applying for DLA, you might be entitled to it, and they are more aware now about people with IIH. When you do apply make sure you print off information about IIH. Here is the link to our post about which pages to print and give employers, DLA etc from the IH Research Foundation site.

Lainy, we will definitely be here for you. I think Heidi's right..you just have so much going on right now it's easy to get overwhelmed. You're looking at what you've lost and afraid of the unknown future..it's completely understandable. You are just in the beginning stages of IIH, but I think that is the most difficult. You're really just learning about IIH yourself and having to educate others, you're trying to find medical care and supports, trying to work two jobs while dealing w/ treatments and side effects, changing dynamics w/ family and friends..it would be a lot for anyone!! I can just reiterate what Heidi's already said..try to take one thing at a time and one day at a time. It will all come together!

Take care and keep us posted!

Julie

Hi, yes i am in the uk, will be talking to JSA about money support. Im currently not working, i have been off sick since May, im due to go back to work next week and am no wat capable of working, i am sure the doctor will write me another sick note. Im ringing gp up later for a appt as still feeling very down.I am having very bad side effect of very painful pins and needles, which are almost and sometimes feel cramp like, it wakes me up in the night!, today the tip of my nose has been numb! this week is PMT week also, which always has given me even worse syptoms. Had letter today confiming that my recent, first MRI is normal and my las filed test states that there is improvement in my discs with no blind spots ect. I told my family this and they actually think i must be getting better?? Im getting ink for my printer this week and printing of some stuff you have on here to show them, i think it may help!im hoping it does and its hard to explain. At the moment i can not see any job i can do in the future, im so sure i will not be able to go back to my cleaning jobs, i felt sick and ill even after given my dog a shower!, I have not been anywhere alone since May 1st, not even to the shop at the end of my road. If i go anywhere new i sometimes trip or loose my balance and get high anxiety, this is the new me, The high piched pulsating tins, well that would just drive anyone crazy, i loved the last lp i got, the silence was worth all the rubbish i went through just for that, you can not explain that sound to someone who has never had it, for me, it all the time and sometimes my eyes pulsate with it also! grrrrrrrrrrrrrr


Thank you all again for being there for me, for your kind words and your help and support!!!!!!!!!!!!!!!!!!!!!!!!!!!!! xxLainyxx

I'm sorry you also have the eye pulsation, but I'm glad there is someone else who gets it too. It's really hard to describe and very annoying. I'm a waitress and when it happens at work, it's hard to dodge around the chairs and tables. I have been fighting depression for a long time. I have chronic depression as well as post traumatic stress disorder and I know when my depression gets worse I have iih flares which is very stressful. The stress just makes the iih worse and then I get more depressed. I find that when I'm in that hole, if I change what I'm doing or where I'm at it helps. Sometimes that's as easy as switching chairs and sometimes it takes a lot more, but getting out of a bad headspace can make everything just a little bit better. We take the good moments where we can get them and try to make the best out of everything else. Take care.
Betsy

Lainy, I know exactly what you mean..the tin and pulsating is MADDENING and I used to beg for LP just to get some relief! I still get them both on occasion, but they're much better..usually just come on as pain/pressure increases. The tingling in my face and balance issues also increase w/ pain. They're usually very manageable these days, but when they start to increase I know I need to go home and lay down. Some people find symptoms increase w/ menstrual cycles and storms too. It is all an adjustment, but it can get better!

I'm glad to hear you're getting good results, but would encourage you to investigate the meds you're taking..they can really make a bad situation worse. Personally, I had a horrible time w/ Diamox and could barely function, so I'm glad you're talking to GP about side effects. It is very disheartening and difficult to see the light when you're constantly struggling and in pain. Sometimes you have to decide whether the benefit is worth the hassle..talk to your doctor and decide what's best for YOU. No one knows your body better than you do, so you are your own best advocate!

As far as your family, I think time and education will help the most. It's difficult for people to understand because we don't look sick..that's why they call it an invisible disease. I know it really helped me to get my family involved in my appointments. When they saw what I was going through and were able to talk to the specialists, they came around pretty quickly. It sounds like you're on the right path..just educate them and give it some time.

When I'm depressed or struggling, I have a few quotes that bring me around. Mother Teresa has some good ones, but my favorite is "God never sends us more than we can handle. Sometimes I just wish He didn't trust me so much". John Wooden said "Don't let what you cannot do interfere with what you can do". And, the ultimate from anonymous.. "Life isn't about waiting for the storm to pass. It's about learning to Dance in the rain". I honestly think that's the key. It takes time and is constantly in flux, but you can learn to adjust and improve your quality of life..hang in there!!!

You might consider joining the Members Journal group..it's a safe outlet for sharing your thoughts, feelings, struggles, and triumphs. You can also PM me or anyone from the Admin team for additional support..we'll help you through anyway we can!

Take care,

Julie