delphicdragon

Hi Everyone- I haven't been on here much because I've been doing better! But, I had a very strange turn of events in the last month and I'm looking for insight. I've been on 5mg of Midodrine for the past 2 years and it's helped a lot - no more seizures, able to stand for 10 minutes, able to work way too many hours, etc. I got my script refilled and started taking the new medication. The pills look the same as they did before but suddenly, I couldn't function. I was exhausted and sleeping through three alarms and not able to get into work until 11am. I looked pale and had headaches every day. I was nauseated and lost about 10 pounds. Finally, I came out of the fog enough to check my BP and it was low as was my heartrate (80/50 p49!!) I'm always tachy, even on the midodrine. So I stopped taking it because I know midodrine can drop your heartrate. Within 24 hours, I came back to being myself. I have the chest pain and the GI issues and the inability to stand up for more than 2 or 3 minutes, but I can get myself into work. I spoke to a friend of mine with POTS who just had her Midodrine refilled and had the same reactions. Anyone here having issues after a refill?? I should say that it was a different pharmacy, but the same chain (CVS). Sara

My research is indicating a normal range for venous oxygen saturation between 60 and 80%. (Remember the veins are carrying oxygen depleted blood back to the heart for re-oxygenation.) So if you were slightly hypoxic, I can see the ER ignoring that value.

Just read an article on Medscape regarding the starch. In patients with severe dehydration (usually due to blood loss from accidents) the starch worked great initially, but then caused kidney failure - seems like it gummed up the glomeruli. The ER physicians are getting away from using it -- ringer's lactate however, seems to not have that same problem. Since we're considered "healthy" patients, who knows, though I tell nurses to treat me as if I'm in heart failure - everything gets done slower and it seems my body can better adjust. Sara

Once for undiagnosed POTS. Thought it was psuedoseizures at first even though I had no blood pressure! Twice after that for anaphylaxsis related to contrast dyes from medical procedures (ERs are useless for that - IV prednisone did nothing!). And countless other times for joint dislocations due to Ehlers-Danlos; though I only go if I can't get the joint back in (ie hips) or if I'm not sure if I broke something, otherwise I find my old orthopedist and listen to him tell me again NOT to do something- lol. Sara

That looks so familiar. I used to get them about once a day, but now that my blood pressure is stabilized, it's been a couple months. I think (my theory) is that the vagus nerve got stimulated somehow and then you start with the uncontrollable shaking or our blood is so thick from dehydration that when it starts flowing normally, our muscles have no idea what to do with the extra oxygen and nerves start firing when they shouldn't. Often this happens if I'm exhausted AND if saline is run too fast. I used to get weekly infusions and when they ran them over an hour I'd start twitching like that (Reminder, don't do this in the ER or else you'll get valium/ an anxiety diagnosis), along with chills and the dreaded D. 4 hour infusions were fine. Doctors have NO clue about this. They all tell me saline can't do that- but I assue you, it can. Gentle hugs. Sara

Just for the heck of it, get a blood smear for dengue or other parasite like illnesses (malaria comes to mind). You have all the symptoms of dengue intermittent high fever, rash, nausea, abdominal pain, low white blood cell count. And yes, it does occur in the US. I know I'm not House MD or anything, but I studied some of the more interesting diseases while getting my Masters and this just stuck out to me. Wikipedia has a good article. Good luck and take care! Sara

jrlehnardt; I get GI episodes very similar to yours. I had them 2-3 times a week for years. They were triggered by cold foods/ cold drinks, activity too soon after a meal, big meals, carb rich meals, greasy foods, etc etc etc. What I found out was that my BP was bottoming out after I ate. This was due to the blood in my body being diverted to my stomach to digest and then my body thinking it was going into shock because my BP was so low. I started the midodrine and after about 3 months, the episodes reduced from 2-3 times a week to 1-2 times a month. I'm happy with that. I was told it was gastroparesis b/c (TMI) what was coming out sometimes was stuff I had eaten 2-4 hours earlier and that transit time was too fast. Shrug. I hope you find something that helps you. All my GI tests were "normal." Sara (PS- Sorry if this is bold, I'm not sure what I did or how to fix it)

I'm sure you've probably tried this, but I find that my pooling is really bad too, due to my EDS. Often I pool in my stomach and legs. I'm much worse after eating too. When you eat the blood flows to your stomach to help you digest ( hence the blue legs, heaviness in the back, numbness/ tingling) and if you're pooling so much, blood runs away from your heart and then you get tachycardia/ nausea/ etc. Perhaps eat just a bite of some protein. (I find carbs can often trigger worse pooling), wait 15-20 minutes and have another bite. Very slowly so the blood doesn't all rush to your stomach. I know it's not a long term solution, but maybe it'll help. Midodrine helped me, as did IV saline. If my blood volume is high enough I can eat without symptoms. However, I still can't do high carb or high sugar. That's a setup for severe nausea and pooling. Good luck and glad the doctors are helping this time. Sara

My boss has known from the start about my Ehlers-Danlos and my POTS. I'm of the belief that I would rather he know then be surprised by it. I've had to take time off work for flares and for injuries, so it's better he knows what is going on. I don't work a typical 9-5, often I work odd hours and can work some from home if I had to. I was told it was best to disclose in that I couldn't be fired if my illness got worse, and I would be protected under the Americans with Disabilities Act. This may not be the case, but it was what I was told. If you don't disclose, they can fire you without making allowances for your disability. I may be completely wrong on all of this, but I always hope that human decency prevails when it comes to chronic illness. Sara

I've been told by my doctors NOT to call my POTS attacks anxiety. Yes, the mechanism is the same, but if I say anxiety, the doctors will latch onto it and not look for anything else. Anxiety, in my opinion, should only be diagnosed AFTER other condtions are ruled out - anything psychological should be a diagnosis of exclusion. That said, if what I experienced were panic attacks, laying down wouldn't stop them. Taking the midodrine has reduced my "panic attacks" from 3-4 a week, sometimes multiple times a day, to 1 a month and they resolve in 15-30 minutes instead of 2-3 hours. Panic attacks wouldn't respond that way. I have had legit panic attacks - I'm also an emetophobe. Fastest way to make me panic is to have someone get sick near me. Those feel TOTALLY different than the POTS attacks. I can't believe that someone would say you had a fear of standing! Over the years, I've been diagnosed with GAD, social anxiety (though I have no problem being up in front of 100+ people speaking, so I didn't understand that one), life transition disorder (which I think isn't even a real diagnosis - I happened to be 18ish when the POTS hit hard), etc, etc... Nothing ever stopped the "anxiety" EXCEPT treating the underlying BP issues. Doctors need to look for organic causes before they look for psychological ones! Otherwise they cause psychological problems instead of treat them. Sara

Andrea --There seems to be a triad with EDS, POTS and either MCAD or CRPS. I was diagnosed with EDS first, then POTS and likely have some form of MCAD due to my inability to tolerate certain chemicals and all contrast dyes without anaphylaxis. Just know that she's not alone in this. These three diseases run together. It seems like there may be an autoimmune component in this. In CRPS the body seems to be attacking the nerves, hence the pain. (Correct me if I'm wrong in this). It's all manageable. She might not be running marathons, but I know plenty of healthy people who couldn't run if they were being chased by a lion. Sara

I've found that when I was on birth control my blood pressure ran higher. This was actually done purposely to try to get me out of the 80/50s. Here's the kicker, with the pill (in my case NuvaRing) by bp was 130/90 and the OB/GYN (who I have since stopped seeing) said, "oh, let's put you on high blood pressure medication too!" I ignored him, and about a month later got a diagnosis of fibromyalgia because of the severe muscle pain that I later found out was brought on by the ring. I also found that if I cut myself I would not bleed because I was clotting so much. After what was likely a small pulmonary embolism, I decided to go off the ring. Within 48 hours I was out of pain. By month's end (took maybe two weeks), my blood pressure was back to normal. I now take medication to raise my BP and have found that for me, this is safer. I'm not trying to scare you, this was just my experience. My thought is maybe (with her doctor's permission) take her off the pill for a week and see if her blood pressure stabilizes at a lower point. I really believe these pills affect BP (as does my endocrinologist). Sometimes it's trial and error to see what we can tolerate. Good luck! Sara

I know that Ehlers-Danlos often leads to Osteopenia. That's been long documented. As for ammonia toxicity, this is the first I've heard of it. Looking through pubmed, there is ONE article that links kidney function and Ehlers-Danlos. It was published in 1967 and I can't get the abstract. Based on the title, urine seems to be more acidic. ( Ehlers-Danlos syndrome with renal tubular acidosis and medullary sponge kidneys. A report of a case and studies of renal acidification in other patients with the Ehlers-Danlos syndrome. Levine AS, Michael AF Jr.) so I guess a link is possible. Perhaps see/ call a nephrologist?

Hey Everyone- I thought I'd share this with everyone on the site. For those who are new, I have Ehlers-Danlos which has caused POTS. I was diagnosed with POTS in 2007 after having seizures from low blood pressure. I currently take 5mg of Midodrine every 4 hours and am finally able to maintain a blood pressure of 110/70. Before the Midodrine, I used to get IV saline every week to try to keep my blood pressure up - I have since been able to stop the saline IVs. My doctors have recommended compression stockings for years and I could never put them on. My joints are so loose that trying to pull on regular nylons causes me to dislocate. I tried wearing knee socks but it didn't help enough. Even with the Midodrine I am still symptomatic during certain times of the month, sometimes requiring me to take time off work. (BP drops to 80/50, medicated, and the room spins, adrenaline surges etc). It was recommended to me by my occupational therapist to try wearing some sort of compression, so I went searching for something that I could put on without dislocating. A friend of mine, who is quite athletic, recommended Under-Armor brand of workout wear. They have a compression line of workout clothing. I thought this would never work, but I am so glad that I tried it!! I actually now wear compression capri pants ($40) and a compression long sleeve shirt ($30) under my clothes and have found I'm much less symptomatic. Walmart also sells Starter brand compression workout clothes in the men's section. I'm 5'8" and about 140 lbs and a small is a little tight, so that's an option too - and it's cheaper! ($12 for a shirt). Just thought I'd share something that has been helping me. Sara

Rama- Midodrine did the same thing to me the first time I took it. Scared the, you know what, out of me. I got a lot done - I was standing for 4 hours straight (something I had never done before without horrific chest pain) and then I crashed, hardcore. I couldn't get up, I was weak and shaking. It was awful. It took about a month before I was willing to try it again. I only took 1/2 of a 2.5 mg pill and this time I made it a point NOT to do anthing strenuous. I didn't crash that time. Now I take 5mg every 4 hours. It took me a while to get up to that amount, but I've been on it about a year. The head tingling thing was the hardest to get used to - but you do, surprisingly. Good luck. It's not for everyone, but I just wanted to share my experiences. Sara