I am being told by my neurologist that I have atypical migraines with pseudopapilledema, not IIH. That diagnosis doesn’t make sense to me. I have had a headache every day since January, and given my other symptoms, that all seem to comport with an IIH diagnosis, why would my bilateral optic disc swelling only be pseudopapilledema and not papilledema? 

I am wondering if someone here can describe the way an IIH headache feels so I can compare my head pain to that. I feel squeezing pressure, like a belt around my head is continually being tightened and that whatever is inside of my head is too big for the space and if someone poked a hole in my head, it would relieve the pressure. (If any of that makes sense.) I’ve also started having severe neck pain and stiffness with it, and have for a while been experiencing dizziness, blurred, distorted vision, feelings of falling, numb, weak limbs, and ear pain and pressure. 

I appreciate any responses. Thank you!

IIH headaches can mimic migraine and tension headaches.  the only way to distinguish them is the LP.  now, there are definitely people who have had papilledema at lower pressures like yours.  I know someone who had it at an ICP of 13.

in these cases, I strongly suspect obstructive sleep apnea.  OSA has been shown to be able to cause papilledema from ICP spikes that occur ONLY during apneas while sleeping.  ICP measured during the day can be normal.  I don't know if you can convince your doc of this, or if you would want to do it, but given the fact that you have papilledema, it might be worth having inpatient ICP monitoring so they can watch how your ICP changes over the course of the day, and especially at night while sleeping.  

would you consider going to Johns Hopkins?  I have heard there are some very good neuro-ophthalmologists there.

I read about inpatient ICP monitoring, but I will have to find a new neurologist to order it. At the University of Michigan hospital system, the neurology department does not believe IIH without papilledema exists, and they continue to say my optic nerve swelling is pseudopapilledema. I don’t really care what labels they give my conditions, as long as they are treating my symptoms, but they are not. The headaches are getting worse, more constant, more painful, and I’m taking nothing but Tylenol, which  barely touched the pain. I have had to quit Motrin because it is ripping up my stomach, but it also didn’t help with the pain. My MRI, MRV, MRA were in February, and they won’t order another one. I’m beginning to worry I have a brain tumor or aneurysm. I’m just truly scared and frustrated. I’m not opposed to going as far as John’s Hopkins, but I will have to figure out the best way to get there.

hey, if you can get in to see Dr. Ronald Chervin at U Michigan, he could probably get your OSA properly managed.  he has published papers using esophageal manometry, which is a very sensitive technique to detect sleep disordered breathing when the usual methods are inadequate.  if you get that managed, it might indirectly help your headaches and papilledema.  
https://medicine.umich.edu/dept/sleep/ronald-d-chervin-md-ms

I'm sorry this has been such an ordeal for you, Melissa! They use MRI, MRV, and MRA to rule out a brain tumor and other diseases, so hopefully that will put your mind at ease. IIH mimics other headaches or vice versa, which is part of the reason it's difficult to diagnose. Your symptoms sound typical, but, as I mentioned previously, there are other conditions that bring on IIH or have similar symptoms. It really is your response following LP that confirms the diagnosis, and that can also vary depending on your position, medications, diet, activity, environment, and a slew of other factors.

I had ICP Monitoring at Cleveland Clinic, but I doubt that you'll need it once you describe your symptoms, attempted treatments, tests, etc. I keep a running list of tests (x-ray, mri, LP with results) and medications (including botox, effectiveness, and side effects) to present at appointments.

I also learned that being emotional isn't helpful because they start looking at depression and anxiety as a cause of your symptoms. It's frustrating and overwhelming, but you really have to approach your appointments as a business meeting to a point. Be honest if you're having symptoms of anxiety or depression because they both relate to chronic condition, but try not to breakdown and become what they would consider to be "hysterical". We have all been there..I completely lost my mind once after waiting three months for an appointment and being told I wasn't on the schedule. I refused to leave until he saw me and never went back. Of course he told me that I was "not my body" and I could "rise above the pain" while comparing my pain to others in his trauma ward that were in accidents and had brain matter leaking out of their ears, etc. Unfortunately, not all specialists are compassionate or knowledgeable and they're usually looking for the easiest solution.

Hi Melissa, 

I'm sorry to hear that things are not so great. 

Personally, my headaches feel like there's a big old ball of pain right in the centre of my head. Behind my eyes ache and feels like they are going to pop out and any light makes that shines in or near my eyes makes me want to punch the sun, it just makes it all worse. 

When I'm having a particular hard time with the headaches and raised pressure there are other symptoms that go hand-in-hand with the headaches. I get dizzy whenever I stand up, I have whooshing in my head & ears, I feel nausea and my head/body feels like its thumping. 

I'm so sorry that you are feeling frustrated and scared. It's unfair that you have to feel so unwell on top of not having the medical support or facts to back you up. Please stick with it! I had months and months of being knocked back and being not believe in and then I found my GP, she is amazing. It took her believing in me  to back me up. As soon as I had her support, she referred me to a handful of neurologists, she pushed for me to get all the tests and was just a driving force which then resulted in the diagnosis. 

Don't give up & best of luck! 

Kind regards,
Chelsea