Hi Jackie.Well now, its hard to know what to think now.But it does not sound like IIH. Be glad! It really is not a nice illnes to have. And you now know that it is not a tumor.So, as frustrating as I know it is for you, at least two big problems are out of the way. Have you posted in the expert forum with this? What was your neuro said is the next step? I will have a look around here and see if i can find anything. It is all about eliminating the big stuff first and working your way down, which is good news for you. They will be more able to help, once they figure it out.I was in no-mans land for a yr and have learned patience.It will be ok soon./Keep in touch,Cath.
Hi again. I had another LP done on Friday and the pressure came back at 12. Last time, which was four months ago it was 21. Any idea what would cause it to decrease despite worsening symptoms? Is it possible that I still have IIh? All of my MRI's came back normal except a note of white matter changes probably related to migraine headaches. I am frustrated with all of this! I was hoping for some answers.
Hi Jackie. Have they not givin you a firm diagnoise yet? If they do suspect IIh/PCT, all your work ups will come back clear. They may do another lp to see what your opening pressure is now and if it has increased.Have you seen a Ophthalmologist yet? You should be seen by one to rule out Papillodema, (swelling of the optic nerve) but not every one one with IIH gets it. If you do have it , it needs to be very closely monitored as it can damage your eye sight.
The next step is usually meds, namely, Diomax.It is a dieratic which helps to pass the excess fluid.
Some drs do lumber punctures as a means of relief, every few weeks or months, depending on there result.
Surgery, for a Vp or LP shunt , is always the last measure. This is because the above have not worked and your eye sight might be in danger. And yes, I had a VP shunt fitted in Nov last year because I didnt respond to the meds or lps.
They will , if you have IIh start you on Diomax. Its nor too bad a drug, a few side effects but ok. Let me know how you get on please and the best of luck! Cath.
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Hi,
I am having a brain mri, mra and mrv next week. I am having double vision and dizziness which have started about 6 weeks ago. The chronic daily headaches have been for over a year. I am thinking they are looking for intracranial hypertension or hydrocephalus. I am only 19, and I had the first lp done 5 months ago. At that time, I was not overweight. Since then I have gained 60 pounds despite 1500 calories a day. I also have PCOS and diabetes, causing severe insulin resistance. What do they do for you for this problem? Did you have surgery? Thanks, Jackie
Hi,
The normal CSF pressure is 50-180 mm of water or 5-18 cm of water. Since your CSF pressure is 21 cm of water it is higher than normal and could very well be responsible for your symptoms of headaches and dizziness.
Thanks
Hi Jackie. I am not a medical person but your opening pressure should be between 11-15. It can be as high as 20 if you are very overweight. I have IIH and my op is 46. Have you had an MRI? What where the results? Have the drs told you what they might be looking for? Do you have problems with your eye sight? Have you seen a neurologist? Sorry for all the questions, but it will help to get a better picture and I or some one else might be able to help more.Cath278
Hi Jackie. I am not a medical person but your opening pressure should be between 11-15. It can be as high as 20 if you are very overweight. I have IIH and my op is 46. Have you had an MRI? What where the results? Have the drs told you what they might be looking for? Do you have problems with your eye sight? Have you seen a neurologist? Sorry for all the questions, but it will help to get a better picture and I or some one else might be able to help more.Cath278