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.
HHugel: Am glad that you stopped the nerve blocks, but how awful to feel like a wrenched neck, ton-of-bricks head!! My head always feels heavy and I'm careful to prop myself at an angle at all times. Thank goodness for neck & wedge pillows. I thinking duct tape might help, too. I am so sorry for your pain...
SophiasMom: I've read some about your OSA & Jaw Surgery...so very interesting and adds sleep testing to my list. Am glad that the surgery dropped your pressure and glad that it was so evident for you. Can you add any more specifics re recent study on CSF + IIH? I'm just not finding incidence reports that don't include either disc swelling and/or stenosis, especially re IIHWOP. Forgive me.
but i will go to see Dr Alexander Sinclair at the Queen Elizabeth in B'ham- she is one of the patrons of IIH UK so is top of the field in the UK so its worth the wait.
Hey Sophiasmom :) Yep i have had my Doc sign me up for 4 weeks of mornings only, back at work- then a reevaluation. - i will see how it goes. I have to take it easy, raised BP still spikes my ICP, and i am still concerned i might adjust to the current level of diamox and get headaches again but we will give it a go :) it is so much better then it was :) :) :)
pressure its chronic fatigue syndrome. Search pubmed. I'm traveling today so cant get it for u.
speaking of CFS - which actually is relevant to a lot of us - I was looking on pubmed and found a very interesting paper cross-studying CFS and IIH.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3899735/
It not only looks at the similarities between CFS and IIH but also states that disorders of raised intercrainial pressure are likely to occur at much lower pressures then previously thought. so leaves the reader with the questions: is CFS a form of IIH and are the normal pressure values wrong
(the yes being implied from where i am sitting lol)
I've always been stumped how with me they've only drained 12-15 ccs during LPs, but I've felt good-great afterwards for about 6-7 hours. Yet, this has had no meaning for Neuros. Their drumbeat has been twofold: 1) LPs are just a point-in-time and not a true read of pressure; and 2) the placebo effect. What slays me is that the last time I got a closing pressure, 12ccs were drawn and I only went from 25.5 down to 23 -- asked all the questions, but got the placebo response. Had a 3-day ICP Bolt procedure done 14 mos ago, and even with spikes and a resting pressure equivalent to 20+ cmH20, procedure was interpreted as "normal". Never got any answers about Lundberg waveforms.
No one's ever mentioned CFS to me as a possibility. Certainly will bring this and the earlier study with me next time. Thanks Keren and SophiasMom!
Back when i was 38cm/H2O on my first LP they did the opening pressure vial, a test vial, took 50ml, then did the closing vial, and i was still only down to 27cm. lol that was a lot of take! (i had a delayed 2 week low pressure headache from hell after that - but apparently its not directly related) but before and after the low pressure headache it sorted my high pressure headaches for several weeks. so it must be a very individual thing.
however once on diamox when i had my second lumber and i was 24cm and they only did the opening pressure vial - my nuero wouldnt draw off any more fluid as he said i was normal - but thats an old story lol - and i didnt get any relief from just that 15ml draw. he used that as further "proof" that my headaches werent IIH - i just told him he hadnt taken enough to help me. and when i increased my diamox and sorted out my headaches it looks like i was right - in my case anyway - lol we all react so differently to this disease.
So...my dr would agree with all of us that your neuro was wrong to interpret your LP findings on Diamox that way. Thought you might like the extra validation! :)