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skborenParticipant
Things that help my migraines: drinking 64oz water per day, taking HCl capsules with meals, avoiding histamine-heavy and histamines releasing foods and inflammatory foods (sugar, dairy, gluten, nuts, chocolate, fruits and juices, vinegar, malt, limiting meat), and taking a probiotic with meals. If I slack off on any of that…BAM, migraine.
skborenParticipantI don’t know that it’s any consolation but I experience the same things. Try sleeping elevated, either in a recliner or on a foam wedge, or elevate the head end of your bed by putting things under the top two legs. That helps me reduce the shaking significantly.
February 26, 2016 at 7:59 am in reply to: Hyperadrenergic pots and being a hypochondriac with ocd #5893skborenParticipantI’ll be praying for you. I think POTS can CAUSE panic disorders and OCD because your brain when it isn’t getting enough blood or oxygen will naturally signal production of excess levels of stress hormones. Have you been able to get a script for Diamox and try that?
skborenParticipantShe actually didn’t do tilt table. She just had me lie there for a few minutes, took my blood pressure and pulse, then had me stand for a few minutes and repeated the measurements. I wasn’t on beta-blockers. I’ve heard magnesium is a natural beta blocker, though, and I take loads of that. No idea if it would affect anything.
Catecholamines are measured through a blood test, yes?
skborenParticipantOk, I am not feeling good about the lumbar puncture anymore. I’ll run the idea by this neurosurgeon of using Diamox instead. Thank you for that suggestion.
I wonder if it’s normal for any of us to have muscle weakness and loss of coordination, without nerve damage, that makes hands/fingers or other body parts shake when we try to use them in certain ways. So, not a rest tremor, not like there’s too much adrenaline…but like a sort of jerky, uneven action tremor because those muscles have some kind of problem. I can no longer navigate on my phone with one hand because my thumb has such a hard time. My typing is affected – I used to type over 100 wpm, and now I’m much slower due to what feels like finger muscle weakness and loss of coordination. And swallowing, I get water up my nose because it’s as though my tongue is also weak and uncoordinated when I try to drink.
And the other thing I wonder about is…do others wake from sleep with their body shaking rhythmically, like an internal tremor that lasts for a minute and then goes away? When I googled that, the only conditions that people had were MS, Parkinson’s, or traumatic brain injury. I don’t have any of those. Doctors have no satisfying explanations for most of the things I’ve been experiencing, and why it all got MUCH worse during pregnancy when I couldn’t stand still for a whole minute without feeling like blacking out. They’ve ruled out MS.
I sometimes have orthostatic intolerance and POTSish issues, but other times not. My PCP did a poor man’s POTS test in her office (when she diagnosed me with venous insufficiency because my feet turn purple whenever I’m holding still) and said I didn’t have POTS. So after 5.5 years of symptoms I still have no diagnosis. After my clean EMG the other day, the D.O. offered an SSRI and Gabapentin, which I declined…I know this stuff has an organic cause…it’s not psychological. Sadly, though, I think there are a lot of other people with similar experiences and no helpful diagnoses.
skborenParticipantThank you again for the reply, Dr. Diana. I’m amazed at your dedication and attentiveness to people who need help.
I’ll have my second EMG this afternoon, so will find out if I have ALS.
I guess I knew the CCSVI train kinda came and left. People were getting awfully excited, but then only about half of everyone was having benefits, and many of those were experiencing restenosis afterwards. But there seem to be a few out there, with MS or similar conditions, who reap long term benefits. I was thinking it might be helpful just to get evaluated to see if I had CCSVI, regardless of whether I got the balloon angioplasty, because there must be other variables to manipulate that affect venous drainage, (some of which I think you’ve discovered through research and trial and error).
After a full week on Diamox, I notice my vision, concentration, and headache are all better. Also, I think as a byproduct of being able to focus and SEE what’s going on, I also lose the usually ever-present low-level anxiety while on Diamox. It’s interesting that we notice results at low dosages, because the neuroopthamologist I just saw said he recently published a study that showed that only really high doses of Diamox have an effect on intracranial pressure; the only reason I could get a Rx from him for 250mg 2x/day was because he said at that dose it can’t possibly do anything, either good or bad. I disagree, but didn’t say so…because I wanted that script! But my guess is that in the research he published, they were measuring ICP using lumbar puncture, and I think if ICP is affected by posture and head/neck position, that lumbar puncture might not be terribly reliable.
I thought I had read something of yours that stated that being on Diamox and histamine blockers might make CCSVI treatment more likely to yield positive results…but maybe that was old info.
For the next month, I have to stay off the Diamox, which bums me out…but it’s for a good purpose. The chiari specialist I’m working with wants me off of it for a month, and then to do a therapeutic lumbar puncture, where the purpose is to remove enough fluid to get ICP down to a certain level, and see what effect it has on me symptomatically. But in order for that to work well, we need to eliminate any effect of the Diamox. He wants to determine whether the tonsillar descent is causing the elevated ICP, or vise versa. Because loads of unfortunate folks get decompression and only come to realize, the tonsillar herniation wasn’t the main issue.
skborenParticipantThank you, Dr. Diana!
I managed to get an Rx for Diamox from a neuroopthamologist yesterday. He doesn’t think it will do anything at all, but he said 250mg 2x/day is innocuous so he’d go ahead and write the script. I’m hoping it will help. I have something serious going on that is acting like ALS. MS has been ruled out. But I’ve had the characteristic headache you describe for 5.5 years, and in 2014 I developed venous pooling in my limbs making them purple and painful unless I’m moving around. This year I developed fasciculations all over, followed by progressive weakness (most predominantly in the left leg where my worst venous pooling is) so that I shake when I try to use my hands, I type poorly, have a hard time using my phone, can no longer play the piano, drive, or walk normally. My tongue is progressively weaker so that I choke and have a hard time making certain speech sounds, my speech gets muddy. At night I have to sleep at a 45 degree incline or else I wake up with my body vibrating, or useless weak limbs so that I fall when I try to get up, or a feeling of suffocation. I have a 1.8cm cyst on my pineal gland that I am suspecting may be blocking the great cerebral vein (vein of Galen) and causing issues, so I am scheduling surgery to have it removed. But I’m scared out of my mind because I have no idea if the $30,000 surgery will resolve anything – I’ve been told conflicting things by neurologists and neurosurgeons. We’re also looking into CCSVI at a facility in LA. But in the meantime I’ll just try the Diamox, etc. and see if it makes any changes. Thank you for your help!January 22, 2016 at 10:01 pm in reply to: MRI Normal? Can anyone see any abnormalities here that the doctors may have missed? #5812skborenParticipantDefinitely low-lying cerebellar tonsils. Also possible brainstem compression, but I’d want to look at a few additional slices to make sure.
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