Hello,

I am a 38 years old woman, I live in France.

I was diagnosed in 2006, I think. I was suffering since a long time of headaches, and one day I woke up with a loss of vision. I went to the emergency room and had a lot of exams. Then the doctors sent me to a neurological hospital, and after other exams (MRI, LP, blood exams...), they told me that I had 2 problems :
Intracranial hypertension
and neuropapillitis on the right eye, after a few days, they could tell me it wasn't multiple sclerosis or Lyme Disease

I recieved a 3 days treatment of corticoids (for the neuropapillitis), and began diamox. I was treated during 4 years. The neuroapillitis recovered.
As I was obese , the doctors asked me to loose weight, and in 2009, I went through surgery to have a gastric banding. I lost 33 kg.
Everything  was okay, the papilloedema reduced, the visual field was better. In 2011, we stopped treatment, and continue to survey, 6 months after, and one year after.

In february 2013, the headache went back. It was horrible. I went to my general practitionner and started again with diamox. In April, I had a MRI, and a consultation with the neuro-ophtalmologist. It Was IIH again.
I have diamox a this time, but with side effects, which are difficult to endure : lots of paresthesias (hands, mouth), nausea....

I had funduscopy and a visual field, and it was better 2 weeks ago. I was very happy and hopeful. But day after day, between symptoms of IIH ant side effects of the treatment, I feel bad. I wake up very early with headache, have tinnitus, paresthesia, and globally don't feel well.


I called the neuro-ophtalmologist, and we try to reduce diamox, to see if there is a benefit... 
He doesn't want to give me topiramate at this time, because I have had severe depression, and the psychiatrists thinks it is not a good idea to give me this medication.
So I try to reduce diamox, I control kaliemia, and I'll have a new ophtalmologic examination on july 10th.

I don't speak french or any other language fluently, so I'm very impressed with your english..welcome to the group!!!

I'm sorry to hear you've been struggling so much! You seemed to respond well to medication in the past, so hopefully they'll find an appropriate treatment for you now. I'm sure your history of depression complicates things, but there are different medications that you can try..hang in there!!!

I encourage you to look through the site..maybe start with Useful Guides and Print Outs section. Let us know if you have any questions. We'll do our best to answer them and help you through this difficult time!

Take care,
Julie

Thank you Julie ! You're very welcoming !

I try to continue to move forward, but I'm a bit sad. Because I hoped like a child that, if I loose weight, as they asked me, I'd have a normal life. But the headache of this year proves  the contrary... and I think, that I am at the same place like 7 years ago... which is quite disappointing.
 

But take heart and continue ! ;)

Hello and a very warm welcome to the group. Your English is much much better than my French. I understand your frustration, and why you are so disheartened when you have been through so much to stabilise your IIH and go into remission. Could it be possible that your trigger was not your weight, especially as you have lost so much?

I hope your medication will work for you, and I will have my fingers crossed for you. Hopefully in time you will reach remission again. Keep a symptom log to keep a note of your symptoms, also keep a log of when they get worse, what you were doing etc, to see if you can find a pattern to which you can work around, and also to show your Doctors.

We are all here for you so please keep us updated on your progress.

Welcome! I agree your english is great! Sounds like you have been through a lot already I can understand your sadness to have this come about again :( hopefuly they can get you to a comtorable place soon!! That log really has helped me to narrow things down for my doctors, its hard to describe so its nice to have it right there for them to just look at with you. I find that they understand you better  with the symptom log. I have found everyone here in this forum to be great, its nice to have somewhere to come where we all understand!! Im always here if you need a vent or a chat ;)

Thank you very much for your welcome ! and for my english  (but I have to say that it takes me a long time to write, because I don't remember the words and have to search or to do a circumlocution :roll: )

I agree, it is really important to find a place to talk with persons who can understand what you're living. I am happy to have found this website, because in french, I didn't find anything specific, and that wasn't helpful.

I already have had a diary with the symptoms and the severity... and I think I'll start again, as you say to me.

Today, it seems to be better, I managed to sleep until 8:00 !!! what a victory ! :thumbs  up:
I still feel as if I was empty with a heavy head, but it's better.
I remain to rest at home, today. And I won't do a big housework !

Have a nice day

Bon Jour Yellow submarine, and 

I hope that you will be feeling better soon with the change in meds.  I know just how annoying the side effects of Diamox can be.  

And your English is very good ;)

Thank you Wylee    

Hello !

This morning I went to the riding school with my daughter. I paid for next year (she's riding since 2 years), and I hesitated to join... but it's really expensive and I'll have to think about it. But at this time, I think it's the only sport I can do... I'm living near the mountains, but I'm not able to go hiking.

But after 2 hours watching her and walking back home, I'm exhausted. She's gone alone with my husband to the carnival of the school... 
I feel bad since one small week, I'm empty  
Tomorrow, we're going to my mum, for Father's Day. I'm happy to have nothing to do !!!

I hope my daughter is not going to inherit from my diseases...

I wonder if your symptoms are getting worse because of your trying to cut back on the Diamox?  Maybe you need to see about increasing it!  I found I had to keep changig my dose of meds depending on current conditions, especially if weather affects you.

Hello !

Here are some news from France !
I am a bit better, the headache stops every afternoon, and I have a "normal" end of the day.

I have to go to the hospital next wednesday. And I hope everything will be OK...

See you after the hospital !

I'm glad things have improved..definitely keep us posted!

Glad you are feeling better already.
Hope the eye doc exam will be good news too!

Hello !
I am at home since wednesday. The doc didn't give me the choice, he gave me a sick leave until yhe 20th. My blood pressure is very low, and the headache, even if better, comes daily.
The doc would like to do an other MRI, because the last scanner wasn't injected... I don't want because it' expensive, and I really don't think I have a thrombosis...
I don't have a huge papilledema, I asked if I can have IIH without papilledema (because I know this pain, and I'm sure it is IIH) and he said no...
I also told him about memory, he said that I have a lot of things to think about, and that I am really very tired... and that I have lost a lot of weight, and have to stop now. It is the first time a neurologist doesn't tell me that I have to loose weight again and again !
I began to cry, when he told they're thinking about keeping me at the hospital to do one LP or more, to see the pressure of the liquid.
He finally said that he'll call me this afternoon, to tell me what the team decided. This doc is really human, and I think he has understood that, even if it is not very serious, it is really boring to have a daily headache for months...

I'm so sorry! At least you have a doctor that seems interested in your well being and trying to find a reason for your pain..it can be a long, frustrating process. You can have IIH without papilledema and it also affects memory, so just keep track of your symptoms to give doctor more information. If it is IIH, you should notice an improvement after the LP. There are low pressure headaches, but they usually improve significantly when you lay down. I hope they're able to figure it out and find the right treatment soon!!!

Take care,
 
Julie

I just talked to the doc. As I don't really want a MRI, and as it is the same for the pain, or a bit better... No MRI ! great !!!
I also said that I can wait until september... he sait OK, but I have to phone to say if better or not at the beginning of august.

I would like to try amitriptyline, if it is better... it is used in France to treat tension headache... I want to try and see... because I am upset using paracetamol almost every day for nothing...

Thank you Julie !