I am a thirty seven year old professional working in the Middle East. I have been in perfect health until I experienced an episode of blackouts for about 10 minutes, and double vision for about 45 minutes and then a temporary loss of my vision in one of my travels to Europe. Added to these, I have been peppered with series of headaches, stabbing pain at the back of eyes, and I noticed that I get stressed and fatigued easily. Out the concerns, when went back home I visited the ophthalmologist regarding the loss of vision episodes, he did the visual field test and then he referred me to a neurologist.

Later on, I was subjected to MRI and MRV and then he diagnosed that I am suffering from IIH. Initially he decided to prescribe the Diamox and Lasix and to follow up with him, one week later to do the L.P thereafter my pressure was 230cm. This was all in Riyadh, Saudi Arabia.

Eventually, I traveled to Lebanon to seek another opinion aside from the first one because I had experienced the side effects of the Diamox and was not happy at all about the medication. As soon I got to the hospital there, I was admitted for 2 days and he did another L.P on me to which my CSF was 150cm. bearing in mind the second L.P was 7 days later of the first one. Due to the result, he reduced the dose of my medications.

However a few days ago I visited another neurologist and he asked me to do the Visual Field Test again. Based on the result, he told me today during my visit that I need to be back next week for another L.P.

Forgive this lengthy narrative, but I reckoned that my IIH is here to stay. In my readings, a typical IIH patient is a woman, with a little or more bulk to spare but nature has its way of balance, here I am a man, with a well proportioned bulk, stuck in this hard to comprehend affliction (IIH). I joined this group to share my experience, and learn more about IIH and how I can make my life as normal as possible with this (IIH) in tow. I welcome any comments or suggestions to share.

Best regards,

SALEH

A very big welcome Saleh, and for joining our yet as modest group. It must have been very frustrating for you up to this point, and probably more so now, because as you say, there is a bigger percentage of women with IIH than there is men. However, the symptoms and effects of the illness are the same, and this is what links us together here.

The medication you were prescribed has proved to be effective to lessen the effects of IIH, but yes, I do agree the side effects from Diamox are very hard to tolerate, and many sufferers have that in common too. Hopefully in time they will be able to lessen your symptoms now the dose has been reduced, and may be more tolerable. Although the lumbar punctures I know are not so pleasant.

Once your symptoms are under control, you should be able to start being able to function much as you did before, but you might have to make some changes and adapt to doing the things you find a little more difficult differently. The main thing to remember is that you are still the professional capable man you have always been, and can be, once you have acclimatised yourself to the IIH and tablets. It's just going to take time.

If it's of any consolation, I started off being treated with the same medication as yourself, and continued that way for another 12 years. In that time I went back to college and studied for 2 years, and after went to work in Medical Admininistration full time until I obtained a promotion to Data Manager and Statistics Co-ordinator. The latter jobs I obtained with an LP shunt. This is why I want to stress and assure you, you can have a reasonable life as before, even with the IIH.

It's very easy to get disheartened and even feel anger, and it is a natural process, especially when it comes out of the blue, and you feel isolated. There is no ryhme or reason to IIH, and as you said it mainly affects women, we are now seeing cases of men and children being affected.

We are here to help you to cope and adapt to IIH, by giving you support, advice if needed, and above all friendship and caring. Please feel free to email me or private message me if you have any questions or anything, I will reply asap. I'm on here everyday too.

We're here when you need us and will always try and help you as much as we can.

Heidi

Hello and welcome Saleh!!

As Heidi has just said it is mainly women who have IIH but the symptoms are the same.
Its good that you doctors noticed it as many are still a little slow on diagnosing. But hey we are glad you are here and feel free to ask any questions. Hope you find this a usefull place for information and support and advice.

Hi Charlie,

Thanks for the warm welcome. I really appreciate your replies to my introduction. I hope that in the future I could share more of my experience with IIH. I wish you all the best and again, my heartfelt thanks for the reception.

Best regards,

Saleh

Hey Saleh when were you diagnosed? And where do you live now? Are you in the UK now? Do you still travel a lot? Just wondering what kind of medical treatment or support you get where you are? I see you profile says Saudi Arabia is that your permanent home?

Saleh you are more than welcome, and I look forward to your posts. I have every confidence that you will overcome any obstacles, and any you can't we will do our best to help you to adapt to and find a way.

Hello Charlie,



I have been diagnosed January 2010. I live permanently in Saudi Arabia but I frequently travel around Europe and ME for business, trainings and seminars. I get my treatments here in Saudi Arabia. We have specialists here as well. Currently in between LP and Visual Field Test, I am under Diamox. However, since I am not aware of any cases of IIH in Saudi Arabia, and I have no one to ask about personal experiences in dealing with IIH, that's why I decided to join in this group.



I am glad that you have take interest in my case. Anyway, I hope to read from you soon and looking forward to being active member.



Best regards,



Saleh

Hey Heidi,

Thank you very much for the warm reply. I will do my best to stay active here in the group and post my experiences as I go through.