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It has been awhile since I have posted. I am EDS type 3, Hyper Pots nd need some advice.
I have had a pretty ugly last 5 months, now working from home. Having terrible neck pain/problems, headaches, fatigue and all the other lovely pots type stuff. I have been to several neurosurgeons who have looked at my neck and suggest surgery which i have not done for instability. So its kind of odd as the majority of my problems are shoulders up this last year. I complain of severe headaches, neck pain, extreme tinnitus, ear fullness and a horrible ear pressure and ear dragging feeling like they are being ripped downward and being cognitively “out of it” and some sharp electric like sensations in my neck. So when I take small doses of diamox I get significant relief from the head ache, a reduction in the neck pain but an increase in the ear symptoms. Sometimes the ear pressure and dizziness are so bad I am in bed even with the diamox. Without the diamox I am lying in bed with unbelievable head and neck pain most of the time. I am always at a cross roads as to take it or not. two weeks ago all hell broke loose when against my better judgment I let the mayo clinic do an LP on me and within 6 hours I was dying with a spinal headache etc. Ended up in the Hospital and getting a blood patch 3 days later and it took about ten days to get back to my normal state of yuck. So here I am the last few days I have taking my diamox and have very little head pain but extreme ear symptoms and I still have the very bad neck pain. Any thoughts? I have tried higher doses of the diamox and i dont get any better relief and I do make sure my Bicarb level is ok. I have had the million test and scns/mris’. I show an empty sella ( although hormone levels are ok) and have had opening LP pressure of 22 and 26 h20. Maybe my instability is just worse than I think and I need surgery?? I also have tried the ZZ meds several times for many months without much notice of improvement so I stopped them. Any of you who have had a instability fusion still have the headaches and require the Diamox? Really at a cross road of what to do. Seeing a pain guy Tuesday and neurosurg again on Feb 7th.
Thanks allI don’t know if you are doing this already but my advice would be to get a Philadelphia collar (and coolmax liners) as soon as possible – the conservative treatment for cranio-cervical instability, see if this makes a difference.
Incidentally, what’s your blood pressure like ?
Barbara
(UK)Barb,
Thank you- I do wear a hard collar from time to time. BP is good as I take beta blockkers for the hyper pots.
Respectfully
BrentOne thing I’ve learned is that we must look at all of our vessels, in addition to CSF flow and vertebrae… Has your doctor run MRV’s and MRA’s? They’ll probably want to look for any impingement of vessels near your ear. Some folks have blockages (internal, or from external compression) that can be corrected, resolving the tinnitus, etc. AGH! You had an LP?! I’m wrapping up our study about our high pressure, and was SHOCKED how many patients didn’t know that LP’s can be hard for us to recover from, and sometimes reopen even years later. I’m on a mission to see if we can avoid LP’s in our diagnoses, unless the doctors need to rule out meningitis or something life threatening. I told my husband that if I went to the hospital for any reason, I was writing “No LP” on the base of my spine with a permanent marker. 🙂 Hopefully, you’ll do fine, though! 😉 Meanwhile, I can’t help wonder if an MRV/MRA could tell your doctors why your tinnitus is persisting… Let us know? 🙂
Barb,
Thank you- I do wear a hard collar from time to time. BP is good as I take beta blockkers for the hyper pots.
Respectfully
BrentBrent, I think you need to be wearing your Philadelphia collar ALL the time.
I need to frame this properly and tell you that I have never had the extreme problem you are having. However, I did suffer from head pressure with some being behind my eyes. I have tinnitus. And I went in to develop an occipital headache that would really stop me from doing anything. I’ve hale POTS jntermittently but not the extremes that some people have. Anyway, I used Petadolex (German brand name for Butterbur…it was the type used in studies). I went on it for 4 months and then tapered…mainly because the studies did not run longer than 4 months and because some studies noted some ‘staying’ power of relief. It worked very well for me and got things to calm down. The society for neurologists (exact name eludes me) recommends it as a top evidence based choice for migraines. So just thought I would mention it. I have mast cell activation and my theory is that it crossed the brain barrier and treated my brain like an HI/stabilizer (that part is totally my on theory and not science based).
Also, im a little concerned about my daughter and looking for any insight anywhere. We see the MD/ neurosurgeon tomorrow at Tufts (actually today …it is 1:16 am right now). My daughter just saw Rordorf out of MGH. (Vascular neurologist). He was very nice. It seems the radiologist (fellow) signed off on the U/S he ordered and said it was fine. Subsequently, Rordorf looked at the images himself and said it wasn’t …noting an ICA stenosis. We have since moved to a pediatric neurosurgeon (daughter is 22 years) who is EDS friendly and connected to Francomano & Henderson. Has anyone seen Rordorf in Boston before? I’m afraid I’m making a wrong move by taking her to another neuro when Rordorf sees stenosis. The original complaint was a droopy eyelid…and then the stenosis was found. The neurosurgeon will run an MRA and MRI. But at the neurosurgeon, they will use Gadovist which is the safest (most stable) gadolinium contrast (so it is used in pediatrics) whereas at MGH uses Ablavar which is fairly new and gives the best picture of arteries (but no long term safety studies and the studies are 68% of white older men). My thought is that a big picture EDS evaluation should be the starting Pinot…I’m assuming the Tufts neurosurgeon at least has a clue about the cerebral nuances of EDS.
You all are pretty experienced with this sort of testing. Am I making a mistake by having the testing done at the pediatric hospital with the neurosurgeon and NOT the vascular neurologist ?
Sorry I don’t mean to de-rail the thread. I can be PM’d.
Thanks Dr D. So far MRV and MRA are read as normal. MRI of frontal noodle shows chronic sinus inflmation an empty sella and inflammed optic sheaths.
Thanks
BrentMRV and MRA, what type of Dr will order these tests?
Great question! Obviously, it deals with vessels. I’ve seen anyone from a therapeutic optometrist to a PCP, cardiologist, geneticist to a neurologist order them! I think the key is to find someone who knows how to interpret them (someone who is not afraid to look past the radiology report!) 🙂
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