I was diagnosed 9 months ago with this dreaded disease. I am 27 years old and I can honestly say this has been the worst year of my life. It started off one day I couldn’t move my head or neck and getting out of bed put me in excruciating pain. It took several ER visits and they did a Lumbar puncture thinking I may have meningitis and I got immediate relief. I seen a neurologist and went through the proper channels and had an MRI done, I was diagnosed with pseudo tumor cerebri or IH and put on the common diamox. Turns out I am severely allergic to the drug and after 5 days of taking it it almost killed me putting me in the hospital with severe problems. It has been a steady downward spiral since. The only thing that helps relieve my pain from the IH is therapeutic spinal taps which are dangerous and leave my lower back and legs in excruciating nerve pain. I have had one every month since I was diagnosed with pressures well over 45. Originally they thought it was a primary disease but my doctors and myself are not so sure if the IH did not present itself from something else. Only problem is finding out what else? I am in constant pain. My bones hurt, literally every extremity hurts inside, my neck(which has this huge knot in it, we have no idea what it is) severe head pressure, back (especially lower), I have GI problems either constipation or diarrhea and do not want to eat much at all with no weight loss ( they have put me on 2 different medications so I can eat and not get sick (nexium and pantoprazole), recently I have had an endoscopy done and colonoscopy, they found mild gastritis and one polyp (was benign). My heart rate at all times is extremely high. I have to take medication to keep it in the low 100s range and you can forget any caffeine, coffee, etc. I have been cleared by a heart specialist they say my heart is perfect other than excessive heart rate. I have these spells VERY similar to panic attacks I went to the hospital over 30 times because I would get chest pain and tightness, SHortness of breath, sweaty hands and feet, and my skin would turn blue and just an overall adrenaline type  rush that lasted for hours. They started me on clonazepam which helps mildly with these “episodes” but only with the anxiety portion. My body still has them I just am able to lay there and accept what is happening better without panicking. Overall on a daily basis one thing is wrong or the other. I am in constant pain. There is several other things I have left out but these are the big symptoms. I am curious if anyone else has had things like this happen due to IH or been diagnosed with an underlying disease. The healthcare system is failing me and it is causing me so much depression. I am a mom of two young girls and a college student. I should be graduating this month. Due to this disease I will not be graduating and have no quality of life. I push myself for my children to still enjoy their time but suffer greatly after the fact. I need answers, relief, and support. No one understands because it’s a disease you cannot see with the visible eye and we cannot seem to get any answers. Any advice or knowledge would be greatly appreciated.