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I watched the ISNVD interview and I thought it was very informative. You seemed very calm and focussed (I would have been nervous!). You answered her questions very well. However, it was hard to hear some of the questions she was asking. The last few minutes were the most exciting for me, because I was waiting to hear about the Vagus Nerve. It was also nice to hear more of your own personal history/experiences. I just want to say Dr. Diana, that you have given a lot of people hope. You are so brave and so strong to have accomplished all that you have (research, discoveries, etc.) ESPECIALLY since you are a patient. I personally know how debilitating the symptoms are. You are very driven – you have the drive to succeed, and I thank you for all of your hard work. You have given me hope, improved the quality of my life (just from a neck collar!) and I know I will improve even more once I receive evaluation and treatment based on your work.
Gratefully,
MJHi,
I’m Jendays247 from YouTube. 🙂 Thanks for the Big, BIG hug the other day when I was watching your speech crying!
I did watch the press interview, and it answered A LOT of questions for me. I actually found a couple of doctors right near where I live (one is only about 5 minutes away). Of course, there was some controversy about whether or not the doctors are still researching CCSVI or dx/treating it (the posts I found were not very recent).
Thank you for all you’ve done. Really. You have taken so many of us who feel like pieces of a puzzle that just do not fit, and you’ve created an entirely new picture of which we can be a contributing, appropriate, and accepted part.
I have to do something, and soon. I’m just getting sicker (but I look good!) and more fearful with each passing day.
Jen
I watched the ISNVD interview and I thought it was very informative. You seemed very calm and focussed (I would have been nervous!). You answered her questions very well. However, it was hard to hear some of the questions she was asking. The last few minutes were the most exciting for me, because I was waiting to hear about the Vagus Nerve. It was also nice to hear more of your own personal history/experiences. I just want to say Dr. Diana, that you have given a lot of people hope. You are so brave and so strong to have accomplished all that you have (research, discoveries, etc.) ESPECIALLY since you are a patient. I personally know how debilitating the symptoms are. You are very driven – you have the drive to succeed, and I thank you for all of your hard work. You have given me hope, improved the quality of my life (just from a neck collar!) and I know I will improve even more once I receive evaluation and treatment based on your work.
Gratefully,
MJOh, MJ, that is SO nice. Thank you so much for your support! I wasn’t nervous (I’m part ham, I think), but I had ZERO idea of what she was going to ask! You may laugh, but a friend of mine had to help me through the conference. She had to practically duct tape me together because I was fighting a kidney stone and a blocked intestine during the conference! So, yes, I guess I am driven! But with so many of us suffering, including so many children and teens who are just starting their lives, I knew I had to do something. Oh, if the cervical collar helped you, I betcha’ Diamox will, too. I don’t know anyone who responded with a collar, but who did NOT respond to Diamox. Sometimes in conferences with patients, I “use that” as a screening tool to see who likely has mild hydrocephalus. Will you let me know? And thank you again, Sweetie. 🙂 Diana
Hi,
I’m Jendays247 from YouTube. 🙂 Thanks for the Big, BIG hug the other day when I was watching your speech crying!
I did watch the press interview, and it answered A LOT of questions for me. I actually found a couple of doctors right near where I live (one is only about 5 minutes away). Of course, there was some controversy about whether or not the doctors are still researching CCSVI or dx/treating it (the posts I found were not very recent).
Thank you for all you’ve done. Really. You have taken so many of us who feel like pieces of a puzzle that just do not fit, and you’ve created an entirely new picture of which we can be a contributing, appropriate, and accepted part.
I have to do something, and soon. I’m just getting sicker (but I look good!) and more fearful with each passing day.
Jen
Jendays247!! You’re here!! I’m so happy!! My friend, we are getting some answers, and I humbly believe we are getting to the bottom of this! I don’t think it will be hard to prove what is wrong with us, and I’m working on “fixes” until they can change our genes. There is so much hope for us right now. I’m not very good about waiting around, so I’ll be up front and center with more info soon. No need to fear (Underdog is here. sorry, couldn’t resist that one. I love Underdog). Please stay close by — I’ll be announcing a registry of sorts soon that you can participate in from the relative comfort of your doctor’s office! How does that sound? Again, I’m so glad you are here, and I’m never short on hugs. Here’s another one. ((((hug)))) 🙂 Diana
This video is great, as well as part 1 & 2 of your talk at the conference!
Going to segway here and ask about kidney stones, since you mentioned you had one during the conference (yikes, hugs to YOU, I’ve had them before… so painful!). I have been wondering if anyone in “our” group of Diamox takers was having any problems with kidney stones, since it is a known possible side effect? And, I read that if you are taking bicarb with it you are going to be even more likely to get kidney stones. I take the 650 mg bicarb tablets I bought online (so much easier than filling gelcaps myself), two tablets , three times a day because my blood chemistry is not liking the Diamox ( I get very acidic). To me that seems like a lot of bicarb, but I have no idea how much the rest of you are taking. Oh, and I take 4 of the 125 mg Diamox a day. I have had kidney stones in the past, so I am getting a bit nervous about more forming. Lately I have had some twinges in my left kidney….
I hope you are feeling better now Dr. Diana!
This video is great, as well as part 1 & 2 of your talk at the conference!
Going to segway here and ask about kidney stones, since you mentioned you had one during the conference (yikes, hugs to YOU, I’ve had them before… so painful!).
Kidney stones! PAR-TAY! 🙂 Trying to put all of the pieces together on this. I’ve read that EDSers are more prone to kidney stones, too. Is that because we have EDS or is it because salt encourages the formation of kidney stones, and most doctors are pushing us to have a great deal of salt and beverages with salt to increase our blood volume? I don’t think anyone knows the answer to that!
At this point, my kids and I are seeing a nephrologist to see what we can do to avoid stones, but stay on Diamox as long as we need it. It is interesting to visit forums for people with pseudotumor cerebri or idiopathic intracranial hypertension because they are all on Diamox for the long haul. They grapple with this, too. I will keep you posted as to what we do. Currently, we drink a LOT of lemonade (with xylitol), are heading toward a low oxylate diet, and we’re decreasing salt intake. Of course, we’re drinking a fair amount of water, but not going overboard on that. Of course, we’re on the lowest dose of Diamox we can be without symptoms cropping up. When I weigh BRAIN vs. KIDNEYS, brain usually wins! 🙂 Of course, we need to protect our kidneys, so I’ll keep you posted as to what I learn, and will be grateful to everyone else for throwing in their two cents! 🙂 DianaYes, brain transplants are not a viable option sadly.
Regarding stones, what about irritation from urine in the bladder back flowing to the kidneys and causing irritation? So many of us have bladder issues as well which is affected by the brain in large part or part of the down regulation you mention in Part 2.
My thoughts even prior to reading some of part 2 (still working on it) is that the body starts trying to compensate and in doing so gets further and further away from a truly balanced state.
I had kidney stones long, LONG before I ever started on diamox. Mostly when I’m pregnant (what is with that?). So, I am SUPER nervous of getting them now, on diamox and taking SO MUCH bicarb. Argh.
But I also wonder about the EDS component… that my/our kidneys do not work as good as they could because the defective collagen..? And, I have also noticed with me, the last year I guess, that my kidneys (for lack of a better term) don’t drain well (to my bladder) unless I am laying down. Anyone else have that? My doctor is wondering if structurally because of the EDS my kidneys are “dropping” from where they should be and that is why the gravity o them while standing up is effecting them? Anyone?
Can anyone tell me how much bicarb they are taking, just to compare? I feel like I am taking a lot and we still aren’t sure if it is enough to balance my blood chemistry. On 2-3 of the 650 mg tablets of bicarb a day I was still WAYyyyy acidic and my potassium even went below normal range and my platelets went low too. So weird. So now I’m taking 6 a day, with my 4 a day 125 mg Diamox pills (spaced out all through the day/evening).
And, I’m not sure that 4 Diamox is enough.. seems to be enough to keep the migraines away, but my tachycardia is not doing good. My heart rate is only normal if I am laying flat on my back. Sitting up it is around 100 and goes up from there when standing. And that is on this much Diamox. Course, I wonder if the whacky blood chemistry could be the cause of the tachycardia right now? All I know is I am tired of it. When I first started taking Diamox, before my blood chems got so acidic, my tachycardia was completely controlled…. bliss!
One last thought… does anyone know if the Diamox and the bicarb should be taken at different times, or is it okay to take them at the same time? And, are there any other meds or vitamins that shouldn’t be taken at the same time as the Diamox? I’m looking to see if taking all my meds/vitamins together could cause the Diamox not to work as well as it should/could?
Thanks for all your input everyone!
Yes, brain transplants are not a viable option sadly.
Regarding stones, what about irritation from urine in the bladder back flowing to the kidneys and causing irritation? So many of us have bladder issues as well which is affected by the brain in large part or part of the down regulation you mention in Part 2.
Bummer,yea, I wish I could tell you that brain transplants were our next study. You know I have to try everything first, right?
I know that we are prone to getting interstitial cystitis (bladder). I GUARANTEE, when I had my BIG stone, urine was backing up into the bladder. They thought it was 1.4 mm (from the CT scan), so I tried to pass it for FOUR LONG DAYS. Every day, my kidney started to hurt more than the day before. (turns out it was over 4 mm. Jeez.).
I found something interesting. You know that we are all low in magnesium, right? Well, MICE (haven’t tested people yet) have mast cells in their KIDNEYS when they are low in magnesium. Hmm. Makes you wonder, doesn’t it? 🙂 Diana
And, I’m not sure that 4 Diamox is enough.. seems to be enough to keep the migraines away, but my tachycardia is not doing good.
Hon, I’d be tempted to go DOWN on your Diamox just a bit to see if your head/neck aches still stay away. Then continue to go down until they come back. Diamox is a mild diuretic, and if you take enough of it, and your blood volume goes down, it may make your tachy worse.
I WISH I knew how much bicarb to take. I just guess, and it seems to vary from day to day. But I had my potassium and CO2 checked every 2 WEEKS for a while as I fiddled with my Diamox dose. Now my CO2 isn’t an issue (knock on wood). I was able to go down to 63mg once or twice during the day, and 250 mg at night time. Everyone is different, of course, and it does take some fiddling. Oh, I did learn that the extended release is NOT the way to go. Period.
I take most of my supplements and meds at the same time. When I’m supposed to take something with food, I think that I’m taking enough pills to qualify as a meal. %-P 🙂 Diana
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