Hello,

This is the first time I have posted since I joined so I don't really know where to start, but i'll try my best.

I was diagnosed with IIH in July this year. I had been having severe headaches for quite a few months but I had put it down to stress so never went to the doctors to get it checked. It was actually picked up at my routine eye check and I was rushed straight to eye casualty that day, I was also sent for an MRI and a visual fields test the same day and was sent for a Lumbar puncture 3 days later. They took my pressure from 30 to 7.

Since my Lumbar Puncture I have had chronic back problems as they had to go in 6 times and i find it extremely difficult to do simple tasks such as walking up and down the stairs, sitting down and sitting up out of bed. Even driving has become a difficult task.

I was first put on Diamox which I really struggled with, I was being violently sick and lost over a stone in weight in less than a week so my doctor told me to stop taking them and I am now taking Topamax, which I seem to be getting on fine with. My doctor said that they would help with my weight loss as they help to curb appetite but I seem to be eating more than ever right now! Does anyone know if they can have the opposite effect?

Since then I still have constant headaches and I have the occasional day where I go temporarily blind for 10 minutes at a time, which has now resulted in my having to leave work as they deem me unfit. I also suffer with bad memory loss over such silly little things, I forgotten how to get home from the supermarket the other day and sat and cried for half an hour and it actually makes me depressed.

Before I was diagnosed me and my partner were trying for a baby, but at the hospital the doctors have told me that I am not allowed to get pregnant until I have lost at least 2 stone, which is quite disheartening but I can deal with this. What I would like to ask is, are there any suggestions that could help me with my weight loss? Due to my back problem, excessive exercise would be quite hard for me to do but I do try to do some. Is there any specific diets I could follow?

If anyone could please help me and give some friendly advice I would really appreciate it.

Thank you

Hello ikiskizzle and  


So sorry you have had to join us, but so glad that you found us.  We will try to help you along your journey with IIH.


Many do find they have issues with Diamox, especially if you are super sensitive to sulfa type drugs.  Topamax is a commonly used second choice, but it sounds like you are now dealing with the side effects of that!  It is nicknamed "dopamax" because of the mental issues that can happen.  I suggest giving the drug a while to see if your body gets used to it, but you may need to change to a different dose or a different drug.


Perhaps the lp was done without the benefit of an X-ray (here in the U.S. we do it under a fluoroscope).  I wonder if they hit the sciatic nerve?  I would suggest telling your doc of the back issues and see if there is anything that may help.


Try to keep a symptom/medication log, samples of which can be found on this website.  Keep track of how you feel, what meds you have tried and how they make you feel, what the weather is, activities you have done that day.  You may find there are triggers that make you feel worse.


BTW, becoming pregnant can cause IH so it is mandatory that you get yours under control before you attempt to get pregnant.  But that is possible, so hang in there! 

Welcome to the group! There are definitely side effects to these meds, so you may want to check with doctor if symptoms don't improve or get worse. I also think a symptom log would be helpful and you can find an example in the Useful Guides and Print Outs section.

As far as weight loss, I would check with your doctor. It's been my experience that nutrition is the main component in weight loss, so I would start by focusing on incorporating more fruits and vegetables. Reducing calories is key in the beginning, but intake depends on size, health, metabolism, etc. Maybe you could get a referral to a nutritionist to help get you started?

Take a look at the site and let us know if you have any further questions or concerns.

It does sound like they hit your sciatic nerve when doing the LP. Did you feel an electric shock in your legs or leg at the time, that's a usual indicator they hit the sciatic nerve. 

See your GP about your back he may treat it with an anti inflammatory that may help, don't buy over the counter ones, as it's better to get them from your GP, who may also refer you for physio. Use a heat pad or hot water bottle where your back hurts as it helps with the pain.


Ask your GP as well about whether there is a weight management programme, or a dietician he can refer you to, to help you lose the weight. There may be one in your area that you can go to, who will be able to give you advice on diet and exercise that will be suitable for you.

Please keep us updated and we of course will do all we can to help and support you.

Thank you for getting back to me

I didn't feel anything at the time of my LP just a lot of pain in my back as the anaesthetic kept wearing off quite quickly. When I was able to get up and about after the procedure I was unable to walk properly, my legs felt like jelly for a few days?

I've been to see my GP today and he has prescribed me Oramorph for my back pain and has also referred me to a pain management clinic for some acupuncture, so I will see how that goes.

He has also referred me for slimming world, I have tried it before and didn't get on with it but i'm going to give it another go and hopefully will be able to get used to it

Hi and welcome to the group!    I'm glad to hear your GP is trying to offer some help with your back pain ... my diagnostic LP was not quite as traumatic as it sounds like yours was, but I do remember I had low back pain early on too, after my diagnosis, and I was referred for some physical therapy which helped.   Not sure if that is an option for you, but thought I would mention it.

I'm not sure what slimming world is, I don't think we have it in the US.  Is it a diet plan? 

Glad to have you with us!   Let us know if you have questions.

Hello BananasMom

Yes slimming world is a diet club here in the UK. My doctor has given me a 12 week referral where I have to lose 5% of my body weight and then I can get another 12 weeks.

I've tried it before I struggled with the plan but they now have a new plan which i'm going to follow.