Hi all, my name is Kathleen and I was diagnosed with IIH almost a year ago.  For the bulk of this past year my symptoms have been fairly well managed with Diamox and I had great relief from a couple LPs (I've unfortunately had 4 and my opening pressures have been 31, 24, 27, and 17).  I have borderline papilledema but both my neuro-ophthamologist and ophthalmologist are pleased with how my eyes look and I get them checked regularly.  I also don't have any neck pain and I have tinnitus extremely rarely.  Headaches have been a huge part of my life since before my diagnosis and continue to be, both because of the IH and for other reasons.  Really long story short, I was able to live with my disorder and make sacrifices without greatly compromising my quality of life.

I do now, however, have this severe, constant feeling of pressure originating from deep within my head and it lasts all day, everyday.  This started about two months ago and I haven't gotten a break from it since.  I wouldn't describe it as like having a headache, as it usually doesn't necessarily cause pain, but the feeling of pressure is debilitating, just walking from room to room or up a flight of stairs is incredibly uncomfortable and makes things like chores and work frustrating and difficult when they didn't used to be.  It's gotten to the point of being so uncomfortable where I struggle to get through the work day and then spend every other free moment at home sitting.  The nurse practitioner that I see in the neuro department near me is useless and has just upped my dosage of Diamox to 3000 mg/day and told me to take my migraine medicine or get a consult with a neurosurgeon, so I'm shopping around for a neurologist now.

I feel like this is a really, really silly question, but I was wondering if anyone else has symptoms similar to mine?  I've done a lot of reading up on IH but most of the symptoms that I read about are the classic ones:  headaches, tinnitus, visual disturbances, etc.  I just feel lost with the lack of support from my nurse practitioner and her inability/unwillingness to help me to get better.  If anyone has any input at all I would so greatly appreciate it, whether you can relate to my symptoms or not, I would really appreciate any feedback at all.  Thanks in advance

Hi Kathleen,
i get the bad head pain but i also get the pressure everyday, its hard to describe but its like being underwater it makes it hard to concentrate, its not always painful( mine will get painful if i leave it to long) but as you said uncomfortable. does yours ease with the migraine medication? im struggling to get help with my migraines and have had to change neuros so i cant really give you much advice but to keep trying:flower:

Welcome Kathleen. Have you checked out our A-Z of headaches commonly experienced with IIH? Sometimes pain relief medications can  cause rebound headaches and I wonder if that could be what you're experiencing. When you use  pain medication on a daily or near daily basis, analgesics can perpetuate the headache process. They may decrease the intensity of the pain for a few hours, but then, they appear to feed into the pain system in such a way that chronic headaches may result. Many times you could mistake this for a high pressure headache, when in fact it could be merely a rebound headache.

Symptoms are a dull, tension-type headache or may be a more severe migraine-like headache and will continue unless you stop taking the analgesic, or it will become more severe and also have you experiencing nausea and vomiting. What pain relief are you taking?

I also get the brain fog, feels like you are underwater.  I guess it could be described as a pressure sensation.  kind of like you are 100 feet under and communicating with the world through a thin reed.  bad irritability, noise sensitivity.  just want to sit and be alone, no stimulation.  I have tinnitus all the time, but not super loud.  occasional headaches, no pap.  so mostly I've had this brain fog, fatigue.  I don't know if that helps.
I'm 95% better after jaw surgery.

Hi Kathleen, welcome to the group! I do have days when I just feel drained and can barely hold my head up from the pressure..not necessarily pain. It increases with activity and stress. Rebound headaches and low pressure symptoms are possible causes other than IIH. Do your symptoms improve once you lay down or get worse as the day continues? If it's not a rebound affect from pain meds or caffeine, I wonder if you're having side effects from Diamox..either taking too much or interacting with something else. Did you add any vitamins or change any meds (even over-the-counter) before this started? I'm sorry the NP has left you to deal with this all on your own..hopefully the new doctor will help you figure it out!

I would suggest keeping a symptom log that includes medications and caffeine, so your doctor has more info and you don't forget anything. There are examples in Useful Guides and Print Outs section. Let us know if you have any questions or concerns.

Take care,
Julie

Yes, I can relate to how a lot of you are also feeling/have felt.  My pressure feeling skyrockets with movement or stress, and it makes focusing and working very difficult, I would feel much better if I could sit and ride it out and be left alone for a bit when it's at its worst.  I feel 1000x better when I can sit or lay down and it's probably worst either while I'm up and about or at night, that's usually how my body tells me that I need to go to bed.

I actually got a second opinion from a neurologist a couple weeks ago and the first thing he did was scold me for my ibuprofen use haha.  There was probably a long period where I was taking ibuprofen three or four days of the week and taking at least three a day.  The main side effect that I get from Diamox is a headache, so the cycle of treating headaches with a medication that gave me headaches began and I would further medicate with ibuprofen.  The neuro was very confident that this was the problem and didn't think that it was related to the IH, I wasn't 100% sure about that so I wanted to reach out to others with IH to find out more about their experiences.  Does anyone have any info on how long rebound headaches last for?

My NP prescribed me Maxalt for migraines, I think it's helpful for me for a more traditional migraine but it doesn't help this pressure sensation. I didn't change any meds prior to this new symptom, but I have now added B-2 and a multivitamin to my meds.  Next step is to drop caffeine, I've reduced it down to one cup of coffee a day but even that really isn't worth it for me anymore if it's possibly causing me discomfort.

Sophiasmom-may I ask you about your jaw surgery?  Was that related to IH or another condition?

I just want to say as an aside  for all of your comments and support.  I've read lots of posts here and I think that this network of support on this website is amazing, I've been brought to tears by reading both the struggles of people affected by IH and the love and support sent out to those that need it.  It's really special to span the globe to reach out to others, it's very isolating to have a rare disorder but having a digital support system is incredibly helpful.  Thanks again

I had rebound headaches from Excedrin Migraine, but I don't remember how long it took for everything to calm down..sorry. I tend to have low pressure issues as often as high pressure now, so caffeine is my crutch. It's really the only processed thing I still eat/drink. I know it's really bad for me, but sometimes you have to use whatever you can get to take the edge off. It sounds like the new neurologist is interested and paying attention, so hopefully you'll figure it all out soon. Good luck!

Not to put down the group in it's entirety, but, our type of issues require an expertise greater than a NP would have.  I would consult only a Neurologist, Ophthalmologist, NeuroSurgeon, etc when it comes to your IIH. Even a PA (Physician's Assistant) would be a better choice.
Do try to ween off the OTC and see if your symptoms improve. Keepings fingers crossed.

I do agree that an NP might be over her head with IIH, and it's better to stick with your neurologist, not even trust your internist with this.  but I'm a doc and I think that NPs tend to be better, and better trained than PAs.