Avatar universal

Idiopathic intracranial hypertension

I have been diagnosed with IIH for about 2 years now. my initial papilledema was grade IV, and initial pressure was 32 second LP pressure had gone down to 25. I am on 500mg acetazolamide qid, 150mg topiramate bid.I have lost quite a bit of weight during these two years as well. My GP and I have tried numerous medications for headaches (gabapentin, tramadol(reacted negatively), advil, tylenol, elavil, etc) with absolutely no result. What concerns me is that the headaches associated have actually gotten far worse and my neurologist at my last LP put them off to being simple migraines and walked out on me. From the research I have done on the condition i have found that LP measurements can be low at times but the condition is still present. I now have daily underlying throbbing headaches that go on all day with almost daily stabbing headaches. I am trying to start my new career and this is severely affecting my life. What I would like to know is, should I be looking in a different direction for a cause or is it likely that this is still my IIH?
2 Responses
Sort by: Helpful Oldest Newest
745090 tn?1259078360
25 is NOT low....good grief some of these neurologist have a chip on their shoulder,simply because they can`t find out why you keep having headaches doesn`t mean they can apply a `one size fits all` and brush you off with it`s only migraines!

The worst thing about IIH is that the headaches do tend to get worse and more frequent if medication doesn`t work,the option then is to try for a shunt which is something your neurologist shoud be taking to you about especially after 2 years worth of pain etc,not getting up and walking off!!
Can you not look at a second opinion or go to another neuro because frankly I`m disgusted with your present one.
Helpful - 0
Avatar universal
I have been trying to get back in to see my neuro for the past 6 months (thats how long it takes here to see any specialist it seems) and i dont have the money to go elsewhere since i just graduated from school. if i dont get a more favourable answer out of him this time im hoping to be referred to another neurologist....but there are not many here and mine is supposedly the best.....just not on bedside manner. I did discuss a shunt with him at one time but since my papilledema has gotten much better he thought no neurosurgeon would even consider the procedure.
Medication is working from the perspective that the pressure has gone down i suppose, but the side effects are that it is significantly affecting my ability to function at work....i just started my career as a nurse and the topamax is making me dopey and sluggish and i dont feel like I am safe to practice some days so i call in sick. I work in the emerg department so i need to be on the ball.Either way, something needs to happen
Helpful - 0
Have an Answer?

You are reading content posted in the Neurology Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
5265383 tn?1483808356
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease