ramakentesh Posted March 15, 2012 Report Share Posted March 15, 2012 http://prettyill.com/downloads/FINAL_DiamoxPoster_vert_36vx48h_02_02_2012.pdfCurrently being tested for POTS and OI. Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2012 Report Share Posted March 15, 2012 I've read her blogs before. At times, it feels like my head will pop because of too much pressure. So, not sure if she's right or not - but, she does test these things on herself and many people are using what she suggest. I've watched quite a few of her videos and find her ideas very interesting.thanks for posting.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 15, 2012 Author Report Share Posted March 15, 2012 I posted the wrong link... darn it.the one I had was about Diamox. Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2012 Report Share Posted March 15, 2012 Well, try again then. Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2012 Report Share Posted March 15, 2012 You posted about the Diaomox on the other thread. You're okay. This is just by the same doctor. Just gives more info on the pressure build up from inappropriate draining of fluids in the head. Causing some to have what she feels is POTS issues - with people that have EDS.You're good. Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2012 Report Share Posted March 15, 2012 This is about a different drug than diamox - but, I wonder if vincopetine would do what this link is talking about. Because it increase blood flow to the brain. Which could be an issue with us that have pooling problems and it would also decrease oxygen to our brains if we aren't getting enough blood flow.Issie Quote Link to comment Share on other sites More sharing options...
anna Posted March 15, 2012 Report Share Posted March 15, 2012 Isse can I ask you to do a little experiment?!Can you lean forward, as if to touch your toes, then come back up slowly. When bending forward do you feel pressure in your throat, does your head feel as if it wants to pop and do you have big pressure behind your eyes?! Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2012 Report Share Posted March 15, 2012 Yes on all accounts. Soooo, what did that show? Quote Link to comment Share on other sites More sharing options...
anna Posted March 15, 2012 Report Share Posted March 15, 2012 Well from what I was told it was because the small valves that should stop the blood from going backwards do not work properly.I will just find the proper tech terms my head is on go slow at the mo. Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2012 Report Share Posted March 15, 2012 So, maybe that's why we aren't getting enough blood and O2 to our heads - valve issues. Makes sense - I have severe issues in my legs. In fact had really bad branches of varicose veins taken out of my legs when I was only 26. If it's happening in our legs makes sense that it would be happening all over our body. What is the proposed action for that? Can't take the veins out in my head or neck. LOL.Issie Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 15, 2012 Report Share Posted March 15, 2012 I get that, too. BTW, I was thinking about when I had my neuro testing in February. Of course, one was the testing where you had to blow in a tube and sustain a certain pressure for 15 seconds. I DID NOT like that test at all, as I felt like I was going to blow something out in my head. But, afterward, things calmed down, and when I was being walked back to the waiting room, I tripped over my feet twice! I can say I never do that, ever. Weeks later I was reading up on Chiari and other things that cause intracranial pressure, and there was mentioned "clumsiness" and "tripping over one's feet" due to aggravating the things that control motor function. Well, I really wonder if all that blowing caused too much pressure, thus the tripping. So, I guess I just keep things like CSF blockages as a possibility, or even cerebral vascular flow inconsistencies, things that may affect the sympathetic system(and parasympathetic). I was watching one of the videos of Dr. Diana (international...part 1 or 2, can't remember), and she was mentioning that increased cranial pressure, I think, could mechanically cause a pressure on the vagus nerve. She said this would cause the parasympathetic system to not function, so one would be left with just alot of unopposed sympathetic stimulation. I don't know if she has all the answers, or even some of the answers, but these things should be being looked at intensively to make sure one way or the other if they could be influencing POTS or not. One of my first POTS symptoms, besides the obvious orthostatic issues, was this constant feeling of having a balloon blowing up in my head. I was so aware of it at first, but with time, it became my norm and now can't remember what it feels like to not have it. Now lately, after reading up on all this, I really wonder if I have too much pressure in my head. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 15, 2012 Report Share Posted March 15, 2012 How do they test if you do indeed have too much pressure in your head? I've wondered this as well, and me ears are a mess - not sure of the two are related. Any thoughts?Claire Quote Link to comment Share on other sites More sharing options...
green Posted March 15, 2012 Report Share Posted March 15, 2012 I tried Diamox back in the day when I was desperately trying things haphazardly. It had no discernable effect, but I had ordered it from a pharmacy in India, so there is no telling whether it was really Diamox. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 15, 2012 Report Share Posted March 15, 2012 Claire, I had read a while back that in Chiari (I just use that as an example, not advocating it!), they do a special CINE MRI. It is something where they put a special pulse monitor on your hand or something, and while they are doing the MRI, the special software can show the amount of cerebrospinal fluid moving with the pulse. Somehow this shows the doctors if there is too much or not enough flow. I don't totally understand it. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 15, 2012 Report Share Posted March 15, 2012 Claire, I had read a while back that in Chiari (I just use that as an example, not advocating it!), they do a special CINE MRI. It is something where they put a special pulse monitor on your hand or something, and while they are doing the MRI, the special software can show the amount of cerebrospinal fluid moving with the pulse. Somehow this shows the doctors if there is too much or not enough flow. I don't totally understand it.Who the heck does these types of tests? I've told a zillion Dr's about the pressure in my head - none ever dig this deep. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 15, 2012 Report Share Posted March 15, 2012 Who is testing this drug in POTS? There are parts of this that sound good, but wouldn't reducing water in the body possibly be a problem for POTS people? Not that I'm convinced about blood volume.Acetazolamide is used to treat glaucoma, a condition in which increased pressure in the eye can lead to gradual loss of vision. Acetazolamide decreases the pressure in the eye. Acetazolamide is also used to reduce the severity and duration of symptoms (upset stomach, headache, shortness of breath, dizziness, drowsiness, and fatigue) of altitude (mountain) sickness. Acetazolamide is used with other medicines to reduce edema (excess water retention) and to help control seizures in certain types of epilepsy. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 15, 2012 Report Share Posted March 15, 2012 "Who the heck does these types of tests? I've told a zillion Dr's about the pressure in my head - none ever dig this deep."Exactly!! That's what I'm thinking--these research places could be doing alot more digging! I know they are limited by insurance on testing, but the POTS research facilities could add these extra tests to look at the bigger picture. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 15, 2012 Report Share Posted March 15, 2012 Naomi, I am wondering if this is the "paradox" they always talk about in the renin-aldosterone system. Remember I posted a few weeks back about the astronaut connection? I was saying that possibly, if someone has a problem with too much fluid in the cranium due to poor drainage or whatever, maybe the brain thinks there is too much fluid in the whole system and thus tells the system to quit holding onto fluid, thinking it will reduce the pressure. This gives low aldosterone, and low renin. And low ADH. Maybe if the Diamox makes the brain have less pressure, things (hormones) might re-regulate. I'm sure it is not as simple as this, as I'm sure researchers would have already had this figured out. But, it sounds like an area that could stand alot of investigation.This is just all theory, but food for thought. Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2012 Report Share Posted March 15, 2012 Interesting idea sue, what the nephrologist told me that they usually do for low renin/aldosterone is give diuretics and beta blockers. I have both issues. He said because I have POTS he wouldn't want to do the diuretics because we stay dehydrated all the time - and I can't do the betas because it degranulates mast cells and I have MCAD issues. So, he basically didn't do anything. He said if my bp got up to 200/100 to come back and see him. I felt like it was a total waste of insurance money. He said he didn't know what to do for POTS people with this problem (in other words - he didn't intend to learn either.)Issie Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted March 15, 2012 Report Share Posted March 15, 2012 This is a good question anna, because it also happens to me. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 15, 2012 Report Share Posted March 15, 2012 I was saying that possibly, if someone has a problem with too much fluid in the cranium due to poor drainage or whatever, maybe the brain thinks there is too much fluid in the whole system and thus tells the system to quit holding onto fluid, thinking it will reduce the pressure. Maybe if the Diamox makes the brain have less pressure, things (hormones) might re-regulate. I get you and it makes sense, but I'm thinking too much cranial fluid would show up on an MRI? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 15, 2012 Report Share Posted March 15, 2012 I would assume so. I can say, though, that my neck and back posture change alot when I am standing. I wonder if that change affects all the flow and that's why things get worse the longer I stand. Kind of like holding your breath--the first few seconds don't ring any alarm bells in your body, but as time goes on, things begin to go crazy. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 16, 2012 Report Share Posted March 16, 2012 Yes true. When I get out of bed, I feel immediate pressure right there, back of head and neck. And last week when I was having the bad head and neck problems - swelling and so much pain and pressure, my POTS symptoms were worse- I was actually sweating from my palms just like when POTS first hit. I realized what happened - about 2 weeks ago I went in for an inner ear test (VEMP test). The test required me to lay on my back and lift my head using only my neck muscles and then hold it - about 5 times. It was torture- I was shaking. I didn't feel anything that first week after the test and then BAM it all caught up to me. I think it was Katybug that said due to the loss of cervical curve all that pressure from the head come straight down onto the spine - that's such a vivid image... I'm picturing brainstem compression? I want a true upright MRI. Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted March 16, 2012 Report Share Posted March 16, 2012 Definitely happens to me. I spoke with a cardiologist about this who of course told me it was "normal". Then I showed him what my neck does when I lay down and his eyes bugged out of his head LOL. He started asking me all these questions like "Have you had a carotid ultrasound (yes), Have you had an MRA (yes), Do you have a heart murmur (yes), Do you ever get edema (yes)?", etc etc etc. He seemed truly concerned, so I think I got him in my corner LOL. I said that I didnt know if all POTS patients had this happen to them when they lay down, but that most of us complain of pressure in our head. He told me that when I initially said that I had pressure in my head, he was thinking of the normal pressure that everyone feels when they bend over. I told him this was about 10 times what normal used to be for me. He said he is going to do some research on it and get back to me to see if he can find any correlation between this, POTS, and any other disorders. He's a pretty busy guy so I doubt I'll hear anything for a while, but at least I got someone thinking!!!I wish I could show you a video of what my neck does, but I will have to describe it, and you will have to take a mirror and look at your own neck when you lay down. Basically when I am laying down and I breathe in and out it pulsates wildly (as if I have an aneurysm or something). This pulsating does NOT correlate with my pulse. He said it was definitely due to pressure gradients and told me it was definitely abnormal. ....Great. Now how do we fix it?!? ..........I also have a visible pulse in my suprasternal notch, presumably from my aorta (which is NOT enlarged). Anyone else notice anything similar? Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted March 16, 2012 Report Share Posted March 16, 2012 Oh, also get fleeting sharp pains in my neck at times too. Quote Link to comment Share on other sites More sharing options...
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