I need a little bit of guidance please

Member

Hi there my name is linsey and I have been suffering with iih for the past 3 yrs on and off but at the min I am suffering real bad.
I have just had a little girl now 5 half months old and about 8 wks ago I started getting real bad head aches now 8 wks later I am still in so much pain
the bk of my head hurts so does my neck my vision keeps going funny and I'm so fed up my ears constanly ringing. I have been on bendrofluzimide for the past 6 wks and it isnt doing anything could this of come bk on cause off giving birth to my daughter I am at wits end now
I am affaid I will not b able to watch my daughter grow up because of the pain
could some plse tell me about if they think this will get better or am I gonna b watching my princess grow up from my bed I carnt take much more all I find on the websites is the bad bits and it makes me cry I just want to b human again
Sorry for winging so much I just in need of a little bit of advice xxx

Admin1

Hello Linsey hug

and welcome to our group. I would suggest that you should either see your GP as soon as you can , or if possible contact your Neurologist, because this sounds like a high pressure headache. They will be able to determine if it is and then treat it, which should then ease the pain you're in. They might even look at giving you something else medication wise to help you.

When I was first diagnosed I was in the same place you are now. When my daughter was 8 months old my head was like yours, and that was how I came to be diagnosed. I then had lumbar punctures and was put on Diamox. My daughter grew up with my IIH, and until she was 12, just thought mummy had a poorly head sometimes, which meant when she was little, she could put on her nurses outfit. When she got a bit older she was used to my bad days and accepted it as normal.

She's 21 now, and the only memories she has of the times I had low pressure headaches from LP's, and high pressure headaches, is of herself pretending to give me an injection or listen to my chest with her plastic stethoscope.

On the right medication, and by pacing the things you do, you CAN, have a good life with your daughter despite your IIH, I promise you. I was able to play games with my daughter, read to her, and do fun things even though I had IIH, and even the days I was ill, I made it so that to her, she was just playing nurse or doctor. I am always here for you, as is the group, and feel free to pm or email me anytime.

Guest

Dear Linsey,

I understand the discomfort you are having now as I have been through it some time ago. I agree with Heidi’s advice that you need to contact your GP for a referral to a neurologist who is versed in IIH. It would be best that you can find the right treatment program that would work for you because incompetent neurologist could cause you problems with lots of mishaps.

As for the pain, headaches, and other symptoms, you can find the right medical approach for them as well. But for now try to calm yourself and try to watch your diet. It's a matter of getting used to and developing a method of coping with them.

I wish you can find the right neurologist to check you out soon. And remember that we are always here for you. So, feel free to contact us anytime. My prayers are with you to get better and I wish you a better day one after the other.

Saleh I need a little bit of guidance please 539880

I need a little bit of guidance please 539880

Member

Hi there ty for the comments I have been to my gp and asked him for a referral which he has done but all he says on the subject is that iih is just one of those things you have to live with and it will just keep coming and going and just to take painkillers, I've got my appointment for the nero but its not till the 1st july!
I just worry that the longer I have to wait the more damage it is doing to me and especially my sight. I understand what your saying to me about keeping calm but its easyier to say then do when all you want to do is live a normal live
Without of the headaches the pain the worry of going blind and having no energy to even look after my daughter properly I know my glassd seems to look half empty an I wish it didn't but with all its says on the internet then looking at my beautiful daughter and thinking god if only just makes teary eyed
I never use to be this insecure eve it was take me as you find me but this illnesss has knocked me for 6 and when I ask question about it I never get proper answers I don't want to not be able to watch her grow up or always wing I want to just get on with it however I do have my gd days without a headache but then like a wally I sit there thinking well it hasn't really gone its just hiding
For a little bit. I know there is light at the end of the tunnel its jusst getting to the end to switch the light on lol xxx ty both again for replying back to me xx

Admin1

Just take one day at a time Linsey, and try not to focus on the possibilities of what can happen, because as yet that is all they are, just possibilities, and you can't live your life on if's and but's. The reason I say this is because, the more you worry and get anxious about what could or might happen, you are trapping yourself in a viscious circle, that will eventually have a negative impact on your life.

The first thing that needs to be addressed are the symptoms you're having now, because while ever feeling like this, it makes it harder for you to see that light at the end of the tunnel. You must never lose focus of that light though, because that is what will keep you motivated, determined and give you that positive attitude that will see you through.

Your GP's attitude to IIH, shows how little knowledge he has got, and his attitude is absolutely disgraceful and unprofessional. Try ringing the number on your appointment letter for the Neurologist, or if his name is on the letter, ring and ask to speak to his Secretary.

It might be better to ring for his Secretary if you know his name, and tell her all about your symptoms, and how your health is now, explain your appointment isn't till July, and you've been to see your GP and told him the problems you're having, especially with your sight, and that he's told you to just take painkillers, and that you can't carry on like this as you're getting worse.

She should then pass that on to the Neurologist, who should then decide whether or not he needs to see you sooner. If the worst comes to the worst Linsey, get intouch with PALS at your hospital. They will then be able to help you.

When you do go to see your Neuro, take someone with you, and make out a list of questions you want to ask, and take them with you. Having someone with you will not only make you feel less anxious, but will give you the confidence to push him more to answer your questions.

Hopefully you will get sorted out, and things will start to improve for you I need a little bit of guidance please 539880

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Member

hi there,
if you want to get things moveing,
GO to the Optician they will check your eye's .
If they find any think wrong with your eye ,
they will send a letter to your gp and your gp
will have to do some thing.and you will be in the hospital
very fast,beleave me .this happened to me 11 year's ago .
my doctor did not do any think.he soon moved he back side
when the letter came from the Optician.
if the Optician do not find any think you can wait for your appointment
knowing your eye are ok, good luck max I need a little bit of guidance please 491246

I need a little bit of guidance please 491246