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ourfullhouseParticipant
Jen,
I am one who ended up having my gall bladder removed (2/2010). It was not because of stones, but just that it was dead/atrophied/scarred/etc. My ejection fraction was a mere 8%.Then, about 6 months after my gall bladder was removed, the pain was back. Huh? I don’t have a gall bladder anymore, so what could it be? It took another 18 months to get a DX. My bile duct was also going bad! Well, more specifically, the Sphincter of Oddi was malfunctioning. It is what opens and closes to let bile into the small intestine. Mine was causing abnormally high pressure in the bile duct (this took a special pressure test, manometry)that was causing my pain. I had to travel to another state to have the test done as it is rare enough it is only done a few places in the US. The treatment is to cut open this opening to keep it open.
It took me longer to heal/recover than “normal”, but that is always true with me (and probably everyone else here, right?), but finally about a month after the surgery I was pain free in my upper right quadrant for the first time in years!
All that to get to my own little vagel nerve theory, and that is that if the nerve is not able to send and receive signals correctly I believe this is what lead to my gall bladder just kind of dying an early death and then also my bile duct malfunctioning in a way that caused those high painful pressures in it.
It is too late for me, at least as far as my gall bladder is concerned, but I would have loved to have had my vagal nerve decompressed and the ctyokines treated FIRST before resorting to surgery, to see if the gall bladder might come back from the dead if the signals were returned to normal.
Hope that made some kind of sense. =)
ourfullhouseParticipantMattiesMom,
You are welcome! =)Your cardiologist that gave you the Diamox RX can order the blood work. It is just a regular CBC and Chem Panel. Nothing weird or fancy. It would have been good if you had a baseline of where you were before you started the Diamox (maybe you have some old labs you can look at to compare to?). This is standard of care when someone is on Diamox. I also had a problem with my platelets, went lo and then high, etc. when I was running too acidic. That is why the CBC is good to do at the same time as the Chem Panel.
(side note: always ask for a copy of your lab results so you can track for yourself how your acidity is doing… sometimes you could be within normal limits, but only by one number and you went from one end of normal to the other and you would want to add more bicarb in that instance, whereas some doctors tend to only look to see if anything is outside of normal. I’ve even had doctors miss things that were outside of normal, telling me all my labs were normal, only to find out once I got the hard copy of the report that 2-3 things were NOT within normal limits. Argh!)
For me there was a time when I was ready to give up on the Diamox because the symptoms from being too acidic were as bad as the POTS, etc. It was only due to the diligence of the lab testing and increasing my bicarb till we could see my numbers finally be in the normal range that I was able to make this work for me. And, it certainly has paid off!
Baking soda in water is really hard to measure and again I will speak to consistency being key here. At first I was filling my own gel caps with baking soda, but it was time consuming and I had no idea how to gauge how much bicarb I was getting. The bottle of bicarb tablets is cheap, so easy to use and now I know exactly how much I am taking. http://www.amazon.com/gp/product/B002CPDF9E/ref=oh_o00_s00_i00_details
I also get the tingling in my hands and feet, like they are going numb. I had it much worse in the beginning and now go days/weeks without it and then have a day where I notice it again. So, I think that is one of those things that gets better the longer you are on it consistently.
ourfullhouseParticipantWow, that is a strong reaction to the Diamox! I know we are all different, but I haven’t noticed anything like that at all with the Diamox. I have been on it about 7.5 months now. I take 4 125 mg pills a day to keep the headaches, dizziness and tachycardia away. If I get a headache despite my regular dose schedule (and I think consistency is part of the key, so we don’t have huge swings of CSF pressure building up, then reducing, etc.) I take an extra pill and that usually does the trick.
I also have to take A LOT of sodium bicarb (I use the pill form that have 625 mg each pill and have to take 7 of them a day) to keep from being too acidic from the Diamox. I did find that being too acidic brings on a lot of symptoms for me and then I thought the Diamox wasn’t working. It took doing blood chem panels every couple of weeks as I increased the bicarb till I finally got to the point where I was back in a normal range and not acidic and then the symptoms were gone.
So, if you aren’t taking bicarb and/or having your blood work tested to see where you are at with acidity, I would start there.
ourfullhouseParticipantBee,
Very interesting. I don’t seem to have low CSF pressure, because Diamox helps my symptoms, but find the connection to making breast milk fascinating! I wonder if the same principal in low CSF causing the brain to “droop” and therefore put pressure where it shouldn’t, would be the same as high CSF also putting pressure where it shouldn’t, because for me, ever since I had my first baby 26 almost 27 years ago, after I wean the baby from nursing, even YEARS later(even 3 years later!), I still have milk (very inconvenient when having a mammogram done!). My doctors have chased this around for years, and my prolactin levels are usually within normal limits (though I have seen my labs and a few times it was a little high, when I wasn’t nursing or even lower than it should be during pregnancy. Not sure what that means). They also suspected a pituitary tumor, etc. But, MRI’s and tests all said that wasn’t it. And, I just realized after reading your post that since I started taking Diamox, I am finally truly dried up for the first time in 26+ years!Sorry I can’t address the low pressure side of this, but I think you are onto something here for sure! =)
~jerri
ourfullhouseParticipantWow…. what outdated thinking. So many of us have IBS, gastoparesis, etc that stomach issues are a very common result of EDS. EDS affects collagen, not just joints. That is why EDS affects the whole body.
As for finding a new doc, call and ask new offices if the dr is familiar with EDS and how if affects gastro issues. They might have to ask the dr and call you back.
There was a gastro dr, can’t remember who, who started using the Beighton criteria on his IBS patients, and found a HUGE percentage of them scored highly and had EDS when further screened.
Palomino,
Yes, I was thinking the same thing, that I would have to start calling around to see if any
GI doctors on my insurance know about EDS. I also need to find a new pedi for my kids.. our current one has NO CLUE and just wants to send us to a specialist or dismisses my concerns and gets us out the door. But for day to day issues we need a pedi who understands how EDS effects everything! My neuro did a consult appt. with one of my daughters (she can’t treat kids per her insurance) and her recommendation was to find a pediatric internist. So, she tried to find one and couldn’t. Apparently there are not any in our area (which is a pretty good size metro area).The amount of phone calls and energy needed to find doctors is daunting for me right now. Maybe in a few months when the weather is better (I usually do better in the summer, as long as I don’t get overheated – that sends me spiraling). =)
ourfullhouseParticipantHow much Diamox do you take? How long have you been taking it and have you noticed any side-effects? That’s exciting that our symptoms are very similar so we can maybe help eachother. I am sorry you are also going through this though. It has been the hardest time of my life. Everything you said about your symptoms was so me. It sounds like you have a full house also and it makes it so hard dealing with all this. How many children do you have? I have hope we will get better! Are you on any support groups? I am so happy I found this site. Thanks again for sharing.
Take care!
I am taking 125 mg of Diamox 4 times a day. I think I started taking Diamox in August 2011. Side effects, well yes. My blood chemistry has been very acidic… we continue to play with the amount of bicarb I take, trying to find how much I need to take to stay balanced (labs currently pending right now) and kidney stones (had a CT last week and I have 3 stones in one kidney and 5 in the other, though I had a stone in each kidney prior to starting Diamox… but the rest are new.. yuck).
Yes, it is very hard being this sick and raising a family. I have 13 children, 10 still living at home (3 grown). I have learned how to run the house from my bed and the kids are great at helping me and each other! I feel bad though… wishing for my “old” self before I was so sick and was so organized and able to do so much! I’m a shadow of my former self it feels like.
I do not belong to any support groups per se, besides our church (they are a great support!). I have a couple of friends that are similar to me in their illnesses, so we support each other and our spouses.
I am also very blessed with a great doctor who reads all Dr. Diana’s research, then does his own, and is doing all he can to put it all together to treat me! When I found out about CCSVI, he did a lot of research and then actually came with me to where I had my CCSVI procedure (a 3 hour drive from where we live) and got to observe and talk to and pick the brain of my IR during my procedure. He is dedicated and very much wants to learn all he can. Plus, just having ONE doctor who doesn’t think everything is in your head goes a very long way.
I love this site and to finally find a place I feel I “belong” with all my illnesses, instead of just one of them. Sorry there are others that have the same constellation of illnesses (EDS, POTS, CCSVI, Mast Cell, etc.), but I sure appreciate knowing I’m not alone. And, then add Dr. Diana doing all she is doing to find us an explanation as to what the heck in going on in us AND treatments to help! Such a blessing!
ourfullhouseParticipantI am very curious what was/is of more help, CCSVI treatment or the Diamox. Or, is it a combination of the two?
Seems interesting that Diamox would reduce BP, because for me, part of my POTS/autonomic disorder is that my BP’s are/were low. Since being on Diamox my BP’s are actually in the normal range now more of the time. So maybe what Diamox does (in that it takes some of the pressure off our brains and then some of those signals that were doing crazy things now improve) is help us have normal BP’s and for those who were running high BP’s, theirs go down and for people like me with low BP’s, ours go up?
Weirder yet is that when I’m pregnant my BP’s are even LOWER than when I am not pregnant. I would run 70/40 or less when pregnant. Kind of like my cardiologist, my OB is used to having to deal with high BP’s in pregnant patients, not low BP’s. =)
ourfullhouseParticipantI think I qualify for this DX too. I had a stress ECHO June 2010, with mild/minor abnormalities all over the place, and a conclusion of “cannot rule out cardiomyopthy at an early stage”. Also says: “Diastolic dysfunction; mildly abnormal relaxation without significant increase of left atrial pressure.” If you want to know more from this report, just let me know. I am having my next ECHO in Sept.. just a couple of weeks away.
Hi Ourfullhouse, Yes, I think we’d all like to know how your echo goes!
I know it has been a long time since I was supposed to update with my ECHO results, yikes, but this is how it went:
On the whole this ECHO (post CCSVI treatment and I was on Diamox) was better than the one 15 months previously. Resting ejection fraction 55% and the mild abnormalities seen previously in the left ventricle are gone (?), the right ventricle previously was at the upper limits of normal in size and is now totally normal, the left atrium was previously mild to moderately dilated and the right atrium was mildly dilated and both are now normal, previously had trace mitral valve regurgitation and now none, and on my first ECHO I had mild pulmonary hypertension and now it is also gone (pressures went from the 32-37 mmHg range to 23-28 mmHg range).
Things that stayed the same were that the mitral valve is mildly sclerotic and the aortic valve is trileaflet with mild sclerotic changes.
The one thing that changed the most in the most recent ECHO and has left my cardiologist scratching her head a bit, is that my blood pressure barely changed AT ALL during the stress part of the test. Doctor talk is “Blunted blood pressure response to exercise”. My doctor was saying she more typically sees BP’s go too high, not that they don’t change. She didn’t think it was bad, she just didn’t know WHAT it could mean.
So, overall, it would seem that CCSVI treatment and/or Diamox have reduced the pressure going into my heart and so where things were starting to enlarge, now they are fine and even the pulmonary pressure is back to normal.
I also wonder if as my veins restenose if the pressure will go back up again? Or, is the Diamox having more of an effect than the CCSVI treatment? Lots of things to wonder about! =)
Anyone else have a before and after CCSVI treatment ECHO done and were there any differences?
ourfullhouseParticipantHave they checked for “floating” kidney? They have to do supine and standing imaging to compare, to see if the kidney(s) drop down when standing ( > 5 cm of change). X-ray with contrast works for the imaging. This can cause significant pain and is very difficult to DX because no one thinks about it. I only know about it because my Dr. is thinking it might be an issue for me (I had my x-rays done last week). Look it up online and see if the symptoms match up. From what I have read the surgery to treat it (put the kidneys back in place and keep them there) is pretty easy and has great results. It seems to me it would totally be a connective tissue problem.
ourfullhouseParticipantElizabeth,
Just wanted to comment on the mastitis issue (and wow, makes me hurt all over thinking about it being so bad as to require hospitalization!) as I would have mastitis multiple times with each baby I nursed (except my youngest,now 3, because I hardly made any milk no matter trying everything lactation consultants suggested including an RX for Domperidone which is a galactagogue… I think I was too sick overall and making breastmilk was a low priority for my body). I did a lot of research because I was so tired of getting mastitis and found some info about using ultrasound (the kind used on muscles, etc.) to help break up the plug that was leading or started the infection process. I did that several times with my second to last breastfeeding baby and it did help (I went to my chiropractor and shared the info and instructions with him and he would set up the ultrasound machine and timer and then leave the room and I would do the treatment on myself).All this to say I now wonder if all this mastitis is because of an underlying blood flow issue? I have CCSVI (as well as EDS, POTS, etc.) and so I know my blood flow is faulty. I know my ability to make milk got less and less as I got sicker over the last several children I had (didn’t KNOW I was sick then, as pregnancy would give me an awesome remission from the symptoms I was having off and on then) and breastmilk is totally dependent on blood flow, so I think the connection to low quantity of milk is easily made. But, I also now wonder about this same poor blood flow contributing to mastitis. Maybe I’m wrong. Maybe it is more connected to cytokines? Hmm….
Oh and I also had worse OI/POTS symptoms during pregnancy, especially the first and second trimesters. First time I ever fainted was during my first pregnancy, while standing in line at the grocery store. So embarrassing! It would happen pretty often, but I learned to get my head down so I wouldn’t faint after the first time!
Your list of biggest symptoms are all like mine! I will tell you that taking Diamox has helped so much with many of those symptoms! The bladder issues (which they think I probably have IC but I wasn’t crazy about having the testing done): the one thing that has reduced the amount of bladder pain issues for me (it always feels like a bladder infection, and sometimes it is, and sometimes it isn’t) was to cut out sugar and reduce carbs. For me at least, that really helped my bladder. And also keeping up on water. If I get a little dehydrated I will start to notice bladder discomfort too.
I was also not a clear cut EDS DX… took seeing a neurologist who thinks outside the box a bit and looked at all of me instead of JUST the Beighton scale and skin/scars. I have kids that score higher than I do on the scale, some that have the stretchy skin and some that have the really wide scars, but seems none have all of those together. Some have had dislocations, but not some of the other outward signs. So, don’t give up on the EDS connection. There are other things to look at/consider for an EDS DX.
ourfullhouseParticipantI totally agree getting a DX is vital. My question is being that I was DX’ed by my neuro, not by a genetic specialist,is there any additional benefit of getting a DX from a geneticist?
Though it seems it doesn’t even matter a lot of the time in the medical community if you do have an EDS DX because most doc’s have no idea what it means. I saw my GI doc this week and asked him if my EDS couldn’t be a part of the gastro problems I am having. To which he said that EDS ONLY effects joints, making them hypermobile. Period. I was stunned. This guy is older, near retirement age, so in all his decades of practice he has never learned about EDS and/or never had an EDS patient before me? Really? Wow. I know I need to find a new GI doc now, need one who knows about EDS, but how does one go about that? It can get so discouraging.
ourfullhouseParticipantKatherine, I have had CCSVI angioplasty twice, both times having the valve treated and my left jugular will not stay open. After my first CCSVI procedure I felt wonderful relief for about 6 weeks and then it started fading pretty quickly. When I went back in for round two (initially for a separate issue, but my IR looked around since he was already in) all my stenosed veins were as narrowed as before, except for my right jugular which was still mostly open, but my left was even worse than the first time (and most, or the worst of my symptoms are on left side). I also had a stent placed in my left iliac for May-Thurners. I also realized later, after learning so much on this website, that I had had a mast cell episode the day before my 2nd procedure (heat triggered) and I’m sure that did not help things (since I was not on any mast cell stabilizers at the time, etc.). So, treating the valve is not necessarily the only component of getting a good result.
Ever since my 2nd procedure last July I have a achy pain and hardness in my neck where I think my left jugular is and my symptoms have gotten worse. I wonder how blocked it is now.. it was 80% in July and 70% at my 1st procedure. Wouldn’t doubt it is 90% now.
My IR says I need stents in that jugular and my azygos (it won’t stay open either.. it has a web across it that does not resolve with angioplasty) but wants me to try to wait it out till the dissolving stents that are being developed in Europe are available in the US (4-5 more years!). Though at this point, with Dr. Diana’s information about the vagus nerve being pinched between the artery and the jugular in the sheath (and I have POTS) I would now be afraid to get any stent in there that might further pinch the vagus nerve.
I do have a great primary care doctor who watches Dr. Diana’s video’s and has read part 1 and 2 of the Driscol theory – yeah! He is trying to figure out the next steps he wants to take with me based on this new information. One of the things he is wondering is about cutting open the sheath to get the pressure off the vagus nerve. It would seem to me that if the pressure was removed then the mast cell/cytocines/TNF and all the autonomic stuff should clear up, if it is caused by the vagus nerve compression. Am I reading this wrong or missing something?
=)
ourfullhouseParticipantI 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!
ourfullhouseParticipantPalamino, and anyone else, has having gotten an official dx for EDS from a geneticist, besides having a dx, been of any help? What I mean is did it change anything or help anything in the long run?
My neuro tested me for the types of EDS that there are tests for and all were negative, but she thinks I have type 3 or maybe some yet unlabled subtype, yada yada. I saw a pedi genetic doc with my daughter who was a total jerk… my daughter he gave a 5 on the bieghton scale and me he wouldn’t even look at because I don’t have the typical widening scars of EDS. He also dismissed us because my siblings (all younger than me) don’t have any symptoms (that I know of, except a sister with scoliosis, and all of herse 4 kids can touch their nose with their tounges – an EDS sign) and my childrens symptoms have been vauge.
Since when we saw him two of my boys have had dislocations. The most recent was my 20 y.o. He was having arm pain and was at the chiroprator to get it looked at. The chiro was doing a very benign range of motion test on that arm and my sons shoulder completly dislocated. Chiro immediatly got it back in place and knew our family history of EDS, so though he was shocked that it happened so easily, he knew why it so easily happened. And this is one of my kids I would have guessed didn’t get the EDS gene.
I now believe because we homeschool and my kids have not been huge into sports is why we have not had more dislocations and symptoms od EDS.
All that to say with a dx from my neuro it helps us know what is going on and what to expect and watch out for, but it doesn’t do anything else for us. I would be willing to try another genetic doctor, but is there really any reason to? Can’t help but wonder if some geneticist would’t find studying our family interesting for research since we have 13 children…. to see how the gene is expressed in such a large group.
ourfullhouseParticipantYes, it was pretty traumatic. 🙂
There is also something that shows up in my blood that I am wondering if it is in anyway related to cytokines, so maybe you would know, Dr. Diana? I have CIC’s – circulating immune complexes in high levels. My doctor refers to them as “clumps of junk”. Maybe I am way off base here, but something in my head is telling me they maybe related to the cytokines.
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