Anybody have IIH or Pseudotumor Cerebri

[Tiggeroo]

I have been recently diagnosed and feel so overwhelmed. Also, wondering how it will affect my upcoming family trip to Disney and how it should affect my planning.

 

[sarabguerra]

Hi there! I do. Was diagnosed beginning of December. Just returned from a split trip to Disney/Universal. I suffered from a history of pretty bad motion sickness and vertigo. Between surgery this past summer to correct some sinus/ear stuff and meds for the IIH, Bonine at night and my ReliefBand on rides, I was 100% symptom free the entire trip. I went on every ride with my family except Hulk as I was just too tired from pushing DX all day in her chair. I even did Velocicoaster and Hagrids twice in one day.

 

[Tiggeroo]

what meds are you taking for the iih and are you getting side effects? I just had surgery to repair a csf leak. I get an lp in a week. This will decide if I can try weight loss, lifestyle changes, diet and medication to treat this or if I need to have a shunt placed in. In addition to this I also was diagnosed with psoriatic arthritis. This was shortly before the csf leak. The leak may have been partially triggered by the steroids I was taking for the psa. I am not allowed to start meds for the psa yet due to the IIH.

 

[sarabguerra]

I'm on Topomax for the IIH. I have not had any bad side effects that I can tell. I do have a much lower appetite, but I welcome that! I also have some inflammatory arthritis in my spine and large joints and fibromyalgia. I take Flexeril daily for that, but had to stop the Plaquenil because I was getting horrible sunburns (a known side effect). I also take Effexor for my anxiety, which is also an appetite suppressant (yippee!) and I think also has helped me just get back to being more of myself instead of sick me. There is some fatigue but I sleep so much better now. I have no leaks, but my eye sight and hearing were greatly effected along with my balance. I have honestly seen a great improvement in all my symptoms but every person is so different.

 

[Tiggeroo]

I'm on Topomax for the IIH. I have not had any bad side effects that I can tell. I do have a much lower appetite, but I welcome that! I also have some inflammatory arthritis in my spine and large joints and fibromyalgia. I take Flexeril daily for that, but had to stop the Plaquenil because I was getting horrible sunburns (a known side effect). I also take Effexor for my anxiety, which is also an appetite suppressant (yippee!) and I think also has helped me just get back to being more of myself instead of sick me. There is some fatigue but I sleep so much better now. I have no leaks, but my eye sight and hearing were greatly effected along with my balance. I have honestly seen a great improvement in all my symptoms but every person is so different.

Thank you. When I got this diagnosis I joined several fb groups to get advice. They are full of negative people who say you never get better. Nobody goes on to live a good life. People have to quit their jobs and more. This all happened so quickly and I feel very overwhelmed. I love my Dr but not really wishing to have a shunt implanted that I will have forever if I can reverse this with weight loss and can tolerate the meds fir a few months while I do this.