Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Havent been on this board for a while, but do check in every so often. Empathize with everyones struggles and celebrate everyones successes you are a strong group and I admire everyones courage and tenacity. Id so appreciate your input as like many, Im in terrible pain and am so very frustrated with my doctors. Sorry this is somewhat long
For past year, my care has been based at a large university hospital system with intent on getting solid DX and treatment plan after 6 years of questionable DX, 3 VP shunts that failed and an ultimate shunt ligation 2-1/2 years ago. My symptoms started raging again 2 years ago & have rarely changed: 24/7 unbearable pressure headache; significant vision loss (peripheral + acuity) with elevated IOP but no paps/glaucoma/macular issues; raging tinnitus on both sides; daily nausea + vomiting; extreme fatigue; cant lie down flat, but reclining at 45-degree angle helps drop headache pain level to about a 6-7. Ive got photophobia + sound sensitivities, too. Sound familiar?
The ONLY times Ive felt near good were after 4 LPs. My pressure has never been outrageously high: 30.5, 25.5 and most recently 23 after 1 year on Diamox 2000 mg. For the past year, the DX has been IIH/PTC. All MRIs, CTs, CTAs, MRVs, most labs and full cerebral angiogram have been negative with one exception. On angiogram they found no stenosis, but my sagittal & transverse sinus pressures were elevated at average of 19-20.
After angiogram and last LP (23 cmH20), my Neurologist changed my DX to Cervicogenic headache, refers to my IIH/PTC as a prior event and has now referred me fully to the Pain Clinic for management & treatment. Im due for Occipital Nerve Blocks in 2 weeks. Ive tried Botox twice already with no relief, and no other meds but the Diamox have ever helped.
I understand that there can be concurrent migraine syndromes with IIH, but I am floored that because my pressure came in just under the clinical line of 25 cmH20 while dosed on 2000 mg Diamox, that my Neuro has abandoned any continued investigation and/or treatment for what Im certain are pressure-related symptoms.
Have I gone off the deep end here? Or, should I ramp up 2nd opinion asap? My thinking is to go for a local 2nd opinion and then head off to a Hopkins or a Stanford, but would really appreciate any thoughts on good headache centers around the country which also would have an understanding of IIH/PTC. Im not finding much in the way of recommendations there.
Thanks very much and sending hopes to all for as many pain-free days as possible.
For past year, my care has been based at a large university hospital system with intent on getting solid DX and treatment plan after 6 years of questionable DX, 3 VP shunts that failed and an ultimate shunt ligation 2-1/2 years ago. My symptoms started raging again 2 years ago & have rarely changed: 24/7 unbearable pressure headache; significant vision loss (peripheral + acuity) with elevated IOP but no paps/glaucoma/macular issues; raging tinnitus on both sides; daily nausea + vomiting; extreme fatigue; cant lie down flat, but reclining at 45-degree angle helps drop headache pain level to about a 6-7. Ive got photophobia + sound sensitivities, too. Sound familiar?
The ONLY times Ive felt near good were after 4 LPs. My pressure has never been outrageously high: 30.5, 25.5 and most recently 23 after 1 year on Diamox 2000 mg. For the past year, the DX has been IIH/PTC. All MRIs, CTs, CTAs, MRVs, most labs and full cerebral angiogram have been negative with one exception. On angiogram they found no stenosis, but my sagittal & transverse sinus pressures were elevated at average of 19-20.
After angiogram and last LP (23 cmH20), my Neurologist changed my DX to Cervicogenic headache, refers to my IIH/PTC as a prior event and has now referred me fully to the Pain Clinic for management & treatment. Im due for Occipital Nerve Blocks in 2 weeks. Ive tried Botox twice already with no relief, and no other meds but the Diamox have ever helped.
I understand that there can be concurrent migraine syndromes with IIH, but I am floored that because my pressure came in just under the clinical line of 25 cmH20 while dosed on 2000 mg Diamox, that my Neuro has abandoned any continued investigation and/or treatment for what Im certain are pressure-related symptoms.
Have I gone off the deep end here? Or, should I ramp up 2nd opinion asap? My thinking is to go for a local 2nd opinion and then head off to a Hopkins or a Stanford, but would really appreciate any thoughts on good headache centers around the country which also would have an understanding of IIH/PTC. Im not finding much in the way of recommendations there.
Thanks very much and sending hopes to all for as many pain-free days as possible.
The last Neuro-Ophth I saw said that the headaches + other symptoms were psycho-genic and would relieve once the headaches were treated. I see a new Neuro-Ophth just before Nerve Block treatment. I have no peripheral visual fields left in either eye and in 2 years my acuity went from 20/60 to 20/300 in both. What's up with that?
Thank you for making me feel less loony about 23 not being a "normal" pressure. I was gob-smacked. Oh, and, Neuro may be taking away DIamox RX, too. WTH?!?!?
I hope everyone has a great Mother's Day!
when i was first diagnosed with IIH, my neurologist thought i had migraines, not IIH. but i finally convinced him to do an LP and my pressure was 38. they started me on diamox. my neurologist didnt know much about IIH. he insisted i had both migraines and IIH, and told the family doc that 1g diamox was the max possible dose. It wasnt enough for me. but after several months i was still having terrible pressure headaches. so i had another LP and the reading was 24. The neurologist dismissed this saying the IIH was under control and insisted that my 'migraines' must be giving me trouble. I told him i knew what the headaches felt like and they were the same pressure headaches i had had before, but he would not listen. i spent another 4 months messing about with neurontin, topamax for migraines, migraine inhalers, and various painkillers - none of which worked - before in tears i demanded of my family doctor that they increase my diamox against the neurologists instructions. normal CSF range is 15-20. we never have a LP when we are healthy. who knows what my normal was! if *MY* normal was 15, the 24 is still terrible for me! and i proved it was correct, because within 4 days of being on 1.5g diamox my "migraines" disappeared. so obviously 24 is not acceptable for me. please do not let them make you doubt yourself. or accept months of pain like i did.
Keren
I am now on diamox and topamax together. maybe a combo might help you?
best of luck with everything.
Keren: how are you tolerating 1.5g Diamox re acidosis, fatigue, etc? And, how much Topamax?
I am managing fine - no fatigue or acidosis. I experience the horrible taste for the carbonated drinks, and strangely milk based products for some reason (all taste rancid) and i have nausea for an hour or so when i take the tablets, and mild pins and needles in hands and feet.
I also took nuerontin (gabapentin) but didnt get on with it - i found that it terribly increased my pins and needles and massively fatigued me - sort of exasperated the expected symptoms of these 2 drugs rather then having its own side effects... dont know why - but that seems to be unique to me - so other then that i havent really had any problem with fatigue.
i did find thinking very difficult sometimes on lower levels of diamox and topamax - especially combined with drugs like nuerontin, but my pressure was up and i was in so much pain... There really arent studies on what is happening within the brain during IIH... all that pressure pressing on different receptors - i am sure it directly effects cognitive response. Anyway, now my pressure is down, i am on both drugs (and have stopped the nuerontin) and my thought processes are crystal clear.
I am not taking anything for granted as i have only been good for 5 weeks now, but 5 weeks with only minor background headache is a miracle after daily pain filled hideousness!! I dont rate topamax on its own at all, but i would be loath to drop it from my combo. i would say try adding it on, if you can get them to do it, you can always stop it if you dont like it - things really wont be that much worse.
PS I dont have pap either by the way, dont let that be a doubt for you - it is one of the symptoms of the modified Dandy criteria but not the only one - it is not required for a diagnosis.
Interesting about your reaction to gabapentin, but aren't we all unique? :) And, am glad that Topamax works for you, as well. I remain hopeful for an RX.
My cognitive only drops when my symptoms spike and hold at a 8-9-10 for a few days or more, but that makes sense since everything I've got is going towards fighting wicked pain. When I'm back at the 6-7 range, I can manage some thinking things but much more slowly than before. And my math/finance skills are just gone now.
The no-paps DX has been one of the most troublesome with current Neuro(s); that plus my age (52) and having a low-normal BMI. I've read about IIHWOP, but it seems all the studies point to its occurrence only with transverse stenosis or other pressure gradient. I wish these damned numbers weren't so iron-clad with so many medical practices.
Have you ever tried any sort of neuro-stimulation treatment?
I assume that you didn't continue with the nerve blocks?