Hello everyone

I am Tamar and I am 34 and in the UK! 

I had a lumbar puncture on Thursday and my opening pressures were 31. So a positive diagnosis of IIH. With hind sight I have probably had symptoms for about 6 years, but these have worsened significantly in the last 12 months since the birth of my third child.  My children are all small and I am worried how this condition will affect me and my ability to care for them.  Also I am worried, is this something that I can pass on to them.  

My neurologist started me on Gabapentin 6 weeks ago to try and manage the headaches and limb pain I am having and it seems to have helped. I was also told on Thursday that I would be started on Diamox but that has not yet been confirmed... I am now waiting to see the consultant again... am a bit sore from the LP... got a headache and the whooshing in my ears still so I am worried that the pressure is increasing already... Would love to hear from other people who have this x

Hi Tamar and a warm welcome to the group. I totally understand all your concerns, I myself started with IIH during my pregnancy, and wasn't diagnosed until my daughter was 8 months old. I was very worried at first how I would cope, and worried for my sight, but I have to admit the Acetazolomide or Diamox as it is now known, worked very well for me, and within a month I was functioning normally again apart from experiencing the side effects, and my vision returned to normal. I went back to work which was part time at the time, shelf filling at Sainsburys in the evenings, so I could care for my daughter in the day. I then went back to college for 2 years, redid my Business Administration qualifications and went to work for the NHS.

I didn't need a shunt until my daughter was 12, and she hadn't realised up to that point that I had anything wrong with me, so please take conmfort in that. I'm sure that other members who have children will also be able to reassure you, when it comes to being able to take care of yours, while managing your IIH. When I was having a flare up, or a low pressure headache from an LP, I let my daughter play nurse, and even bought her a nurses outfit an doctors bag, and made a game of it, so that it wouldn't have too much of an impact on here, which it didn't, she just remembers playing nurse and wearing the outfit.

As to whether your children can have IIH, it hasn't been officially stated as being genetic, although there are cases of parents and children with it, and even siblings, they still don't really know what causes it, only that it can affect anyone of any age, gender, body type and ethnicity. My own daughter is 24 now and she doesn't have it, but my sister who is now 50 was diagnosed at 48 with it, 25 years after I was. So as you can see there is no rhyme of reason to this condition. Don't focus on whether or not they may or may not have it, because you have enough to deal with as you do have it, and you don't want your children to pick up on your fear of them having it.

The only thing you can do at this stage, is to take each day at a time, keep a symptom and medicationl log, which you will find in our printout section, as well as lots of helpful booklets for you to read, both from us and our Partners, The Brain and Spine Foundation.

If you find that your headache is worse when you sit upright and move about, it could be that you have developed a low pressure headache after the LP. The best way to cope with that is to drink plenty of fluid, especially caffeine to help your pressure to stabilise, and to lay flat, and take the pain relief you have been prescribed. If it doesn't get any easer after a few days, ring the ward you had the LP done on, they should be able to advise you in a more medical capacity.

Importantly, remember we are all here for you, even when you want to have a good old rant. You're not alone you're part of our community, and we will help you all the way.

We are soon to be a Registered National UK  Patient and Advocacy Charity for IIH, and we are in the process of being able to provide hospitals with our Big Lottery Funded IIH Support Packs. We are working hard to get IIH established and recognised as a rare disease and chronic condition, and to be able to advocate to employers and the DWP your behalf. We can also help you with your benefits should you need it.

Hi Tamar!!!  I know this is a scary time for you I also was dealing with my headaches for years before getting a diagnosis, I felt better finally having a name for my pain!!  Hopefully now that you know what is going on you can get to feeling better! I hope the medication they are starting you on helps. This group has made such a difference for me in this journey such great people with very good advice im glad you found us!! I just wanted to say hi and welcome!!! Please keep us posted!!

Hello Tamar and 

If I remember correctly, it is not uncommon for IIH to rear up when pregnant, due to the change in hormones.  That may be a trigger for you.  
I also hope that your docs will keep a close eye on you and get you feeling better real soon.

Hi Tamar! I also just wanted to add a quick welcome. I agree with Heidi and would start a symptom log, which includes medication. Especially if they're going to add Diamox to Gabapentin..it will help you track any patterns or possible med interactions.

I lost the ability to have children before they diagnosed IIH, so I'm afraid I don't have much info regarding pregnancy and child rearing..I do know IIH has been linked to hormones and other members started having issues during pregnancy or after birth. I had a cousin that was also diagnosed with IIH, but we were told there's no genetic link..I'm not sure there's enough research to confirm it's genetic, but it has happened.

It seems that most members are able to modify tasks and function with IIH, but it depends a lot on your symptoms and how you respond to treatments. Unfortunately, everyone responds differently. The log will help you identify triggers, so you can make adjustments to activities, foods, etc. It's really all just trial and error, but let us know if you have any questions or concerns and we'll do our best to help you through it!

Take care,
Julie

hi tamar

i have been dealing with iih since aug last yr after having surgery for a chairi malformation.
i have been taking tramadol for my headaches and paracetamol also but i find the best relief is lying down and eating ice pops lol. i am under stoke hospital as that is my nearest neuro hospital and am due to go back to have a ct scan and xray to check if my shunt is working correctly, if not i will have to most prob have more surgery.

i have 2 boys 8 and 5 and they are fab when i have a flare up, looking back i most prob had symptoms when i was pregnant but pushed them to the back of my mind :(. take each day as it comes and if u are having a bad day the kids will adjust. i know it easy to say it but really do try and rest and you will find your abilities to do things change, takes me nearly 2 hours to prep veg for a sunday roast lol but do take ur time hun. dont rush anything.

we are all here if u ever need anymre help/info.

Hi, Tamar!

Welcome to the group. As with all new members, I am glad you came here to share and be comforted; but I hate that the reason is IIH. I hope you will feel free to share and vent freely. Hopefully, together, we can piece together some of the common threads and make some progress on curing this thing.

Mark