Hello all,

I joined a while back but I don't think that I have introduced myself yet.

Ill introduce myself:

I started having very bad headaches when I was around 7 and then on and off until I hit my teens when they got worse. I had a CT scan at 16 but nothing was diagnosed. The headaches continued throughout my late teens and even after many trips to my GP and optician, nothing was still diagnosed. It wasnt until it seriously took over my life and having lots of time off work, I had hassled my GP so much that I was referred to a neurologist.
After a MMR and a lumbar puncture (my levels were extremely high) and a trip to an opthalmologist, I was finally diagnosed with BIH (aka IIH), around 2004.
I was prescribed Diamox and was on that for about 8 months. At the same time I was put on the medication, I went on a strict diet and managed to lose 5 1/2 stone with a lot of hard work and practically starving myself! The symptoms lessed a lot so I was taken off the medication and signed off my my neurologist as they were happy that my symptoms were controlled.
I did continue to have headaches and other symptoms for several years after; however bad some days, but some better days.
Well, here we are at present day. I am stuggling to keep my weight down and 3 stone of the weight I lost has gone back on again and the symptoms have worsened like before.
for the last few weeks, I have felt drained, I have had the 'whooshing' sound again, headaches, neck and shoulder pain as well.
I know I need to lose a lot of weight but I am constantly exhausted so dont have the energy to do anything and although I dont eat very much, my weight just will not go down, so I am in a vicious circle.
I hope that you can recognise my story and maybe offer some help and advice?

Hi Lucie! I'm glad you decided to share your story.. to the group!

I'm sure you'll find a lot of other members struggle w/ weight issues. Some have improvements w/ weight loss, some don't. Some didn't gain weight until after they were diagnosed w/ IIH. It is a vicious cycle and can be difficult to manage, but I think you'll find plenty of support here. You seemed to have good luck once your pain was under control, so I'd start there. Have you had a recent evaluation? I'm not sure how you tolerated the Diamox, but you might consider contacting your GP or optician to confirm diagnosis and try it again. Maybe once your symptoms are manageable you'll be able to lose the weight. Hopefully, you'll at least have more energy and be able to increase your activity level. I think that's the biggest struggle for me. I gained a significant amount of weight since diagnosis, but can lose a good majority of it when feeling well. When I'm not feeling good and my activity level drops, the weight comes right back on..
I have to admit it makes me a little

There is a "Weight Watch" section where members discuss there struggles and triumphs, so maybe you'll find some useful information there. I honestly would address the symptoms first, then hopefully the weight will come off again. Hang in there, and good luck!!!!


Julie

Hi Lucie

I absolutely know where you are coming from with the vicious cycle. It is hard to keep the weight down when you can't exercise like other people because it leaves you exhausted and headachey, and feeling anything but energised. You can be on the healthiest diet ever, and still unfortunately put weight on, because your body can't cope with any exertion. I know that from my own experience.

The fact that even when losing weight you still had the symptoms although lessened, could probably be a reason for why you were unable to maintain your weight once you lost the extra weight.

Now you have the full symptoms again I would go back to your Doctor and talk about renewing your treatment plan, and to also make the point that any exertion you try is making your symptoms worse. Perhaps once your IIH is under control again, you will be able to lose the excess weight and your Doctor could work with you to find a way for you to maintain it.

You aren't alone and as Julie says, we do have a weight section and I myself am one of those who is also trying to get their weight to a better place.

Heidi