January 22, 2016 at 6:46 pm #953
I would like to try the Zyrtec/Zantac/Diamox protocol in an attempt to avoid Chiari decompression, but I have a concern, because Zantac is an acid inhibitor and I already have low stomach acid and have to supplement Betaine HCl or else I have bowel pain and lots of undigested food in stools (sorry, TMI).
Will supplementing Betaine HCl negate any effects of the Zantac?
Also, knowing that Diamox is a diuretic, and that I have low blood pressure, will the Diamox further lower my arterial blood pressure?
Thanks!January 26, 2016 at 6:07 pm #5816
Great questions! Many of us have low stomach acid due to poor vagus nerve function. Parasym Plus is designed to correct that. If you have other symptoms of low acetylcholine and/or vagus nerve problems, it may be just what you need. Being a mild diuretic, many of us with POTS had your fears — HOWEVER, if you have any pressure on your brain stem from high intracranial pressure, that can cause issues with low BP, heart rate, etc. Reducing the pressure can often correct it. It’s contrary to what our first instincts are — I think that is one reason doctors don’t go to it first. I *hope* you are like many of us and can avoid decompression. I had “Chiari Zero” — sort of a no-brainer for me, but it can still be effective for “true” Chiari. In the Driscoll Theory book, I have some references to published research explaining this and presenting case studies. Fingers crossed for you!January 27, 2016 at 11:30 am #5817
Thank 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 27, 2016 at 6:00 pm #5818
I’m so sorry you are dealing with so much… 🙁 I don’t know if you have ALS, of course, but I will tell you that it is something most of us fear when we are so dramatically ill (including myself). But ALS was ruled out immediately — although I was incredibly ill, my balance was not significantly altered. Balance problems are often times the first symptoms of ALS — patients aren’t necessarily that ill (like many of us), but stumble around almost appearing drunk to the outside world. Although it wasn’t an answer for me as to what WAS wrong with me, getting the ALS monkey off of my back was helpful. I hope someone can give you an answer for that soon. Concerning CCSVI, you know we’ve been there, right? We did not find treatment to be of any benefit, but it is high risk (death from the heparin used to control post-treatment clotting). I do think that when folks did notice improvement in some symptoms (brain fog, circulation for example), it may have been the heparin that they were responding to (as opposed to the dilation of the vessel). Instead, I came to understand that most of us need systemic treatment. Our problems were not limited to one or two vessels, unfortunately. You are the second person I’ve heard from with a pineal cyst lately. I hope you get some relief soon. Big hug,February 3, 2016 at 1:33 pm #5825
Thank 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.February 3, 2016 at 2:19 pm #5826
I agree with you on all counts, but want to add one thought. Because so many of us do not heal well from lumbar punctures, I wonder if there is another way… Instead of using an LP to check for changes in tonsillar descent, could they use a fairly high dose of Diamox (assuming your CO2 is 22 or above)? Did you see the references in The Driscoll Theory (case reports of how Diamox can reduce or eliminate Chiari)? The other fear I have is that an LP can CAUSE a Chiari (it’s called “induced Chiari” and is also referenced in the book). What patients describe to me is that during an LP, their CSF shoots out (often across the room), then STOPS because they now have an induced Chiari corking the top of the spine, halting the CSF flow. Does that make sense? Their doctors see or measure very high pressure, but then it stops, totally confusing them. Induced Chiari is real and if your doctor can accomplish the same thing with Diamox, wouldn’t that be just dandy? 😉February 5, 2016 at 9:22 am #5829
Ok, 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.February 5, 2016 at 10:14 am #5830
I think plenty of us have shaking/tremors/poor coordination and all that involves, sadly. I had hyperadrenergic POTS and the catecholamines were quite elevated, contributing to tremor. High intracranial pressure also contributed to my tremor, but there are SO MANY other potential reasons for tremor… The tilt table — I just wanted to be sure you weren’t on beta-blockers at the time?February 6, 2016 at 12:36 pm #5832
She 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?February 6, 2016 at 1:20 pm #5833
You should know that I passed a “poor man’s tilt table test” (what you described) when I was first ill. On the ‘real’ tilt table test, however, my heart rate went up 50 beats/minute. Sometimes the poor man’s is not indicative of POTS (some of us use our leg muscles even without trying). I would suggest a real TTT. Magnesium shouldn’t be sufficient to throw off your results. Yes, catacholamines is a blood test.
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