Hi, my name is Clare and I am 33 yrs old. I have just been told I have IIH after a week spent in hospital where the only tests that showed anything were a lumber puncture. I had two types of CT scans which were both normal but the LB showed high pressure and raised levels in protein. Is this the normal thing you get diagnosed from? I also get very dizzy, feel like I am on a boat and have a morning sickness feeling all day long, alongside a headace and an aversion to bright lights. No-one seems to know much about it, not even my G.P.
My question really is, what's next? What's the future going to be like?

Any thoughts would be great

Thanks

Clare xx

Hi Clare, and a very warm to you.

Your questions are very typical of those of us diagnosed with IIH. True, seems there are not many people out there that really are helpful with the answers about IIH. But, now that you have found this wonderful website, you will see that we share what we have learned, and tried, about our frustrations and successes, and a whole lot of love and support. Because we have bben there and done that, we can help you along your journey of life with IIH. It is doable!!

Have your docs put you on any medications? Many of us are taking the diuretic "Diamox", the number one most commonly prescribed for IIH. I also take the diuretic Furosemide, just to help control the amount of fluid my system produces lower. Then there are pain meds if you have headaches, the meds for dizziness (I used Meclizine for awhile) as well as alternative therapies.

There is lots to read here, when you feel up to it, and many great listeners too.

As far as what is next, finding some good, knowledgeable docs would be helpful. You will need a plan of action and someone to lead the group. Often it is a Neuro-ophthalmologist or a Neurologist. Hopefully your pressure will be reduced, via lp, and then kept down through medication. If that doesn't work, there are surgeries available that can help. This is a treatable disease.

Again, welcome, and look forward to hearing more about you and your journey.

Linda

A very warm Clare I am so pleased you've joined us. I can only agree with what Linda has said, and I know you might still be feeling a little shell shocked and there is an awful lot to take in, so take it a bit at a time.

It is possible to get on with life , but adjustment to certain things is necessary and par for the course I'm afraid. You'll have noticed that there are certain activities that may aggravate your headaches, so pace yourself when doing things and listen to what your body is telling you. We do have a booklet I Have IIH - A New Way of Life which you might find helpful.

Please take a look at our other booklets and leaflets as they do address all the things that you experience. We also encourage you to keep a symptom log sheet which will help you with your Neuro Appointments to give them a clear view if what is going on with you and for how long etc, and also a Housecleaning Task Log to help you adapt to doing tasks in the home and help you find a middle ground.

Please dont hesistate to ask questions or even have a rant if you need one.

Heidi

Hi Clare! Welcome to the group. I can say from my own experience that you have found a wonderful place here for support and encouragement from people who are living well with IIH.

I can relate to all the syptoms you've mentioned here. Like the others, I'm wondering if the doctors have started you on any medication yet, and if so how is that going for you? Wylee mentioned Meclizine ... that was a very helpful medication for me too, in the beginning, for dealing with the dizziness and nausea.

We look forward to getting to know you better. Please don't hesitate to ask if there's anything we can do to be helpful.

Hi Claire,

to the group!

Having your CT scans coming back normal and having a LP is the normal dignosis for IH so don't worry and dizziness and nausea are normal symptoms of IH. If they persist talk to your Neurologist and you'll be able to discuss together the best form of treatment for you.

Not a lot of GP's know about IH and as a organisation we are working towards making a change so that people who are newly diagnosed are given the information about condition straight away.

Please have a look through our booklets and any questions please don't hesitate to ask

You can still live a full and fulfilling life, its not the end, stay positive, you are not alone :flower:

Thank you all. It is nice just to know there are other people who understand how you feel and what you are going through.

I have an appointment on Wednesday to discuss what's next. I was interested to see other onditions associated with IIh as I have PCOS and my blood pressure is often high, maybe that's something I should mention?

I look forward to getting to know you all better

Clare

Clare I would definitely mention you have PCO's, I too have them and so do some other members and it has been documented as being related to IIH. Please come back and let us know how you get on.

Heidi

Yes, I would definitely mention your other conditions to the doctor. I also have PCOS, and I know some think there may be a correlation between IIH and PCOS. I am treated with medications for both myself.

Hope your appointment goes well on Wednesday! Check back in and let us know how you are afterwards.