delphicdragon

Let's see... I'm wicked bad at immunology IgG: Secondary Antibody response, how your body remembers what you've been sick with IgM: Primary Antibody response - what happens when you get an invader (bacteria/virus etc) IgA: Mucosal Immunity - Digestive tract, respiratory tract, etc (First line of defense) IgE: Allergic response antibody Hope that helps (and that my POTS brain isn't wrong tonight, it's a little hyper) I so wish the letters corresponded with what they did. Sara

Hey Everyone- Just wanted to let you know that I finally got up enough guts to ask my current PI (boss) to be my thesis advisor and he said YES! I'm on top of the world right now! I'm so happy, I was jumping up and down!!! And he knows about POTS and EDS and has been very very understanding. Here's hoping the next three years goes well with only a few flares. Sara

I don't know how you guys can wear abdominal support belts. If I have anything touching against my stomach I get severe pain. All my pants are two sizes too big just so I have no pressure on my belly. Do they help though? Sara

MountainSunflower- My legs feel awful when I do it, and if I stand up things get 100X worse. It's a fail safe mechanism so that I don't pass out. Sara Don't know if you can crouch "wrong"?

Just wanted to add in my two cents here regarding EDS and head/neck instability. I have EDS type 3 and thought that my neck was the one part of me that DIDN'T dislocate. I had wisdom teeth pulled - no problem- granted they had all ready broken through, so this was a regular extraction (2 teeth at a time) done without general anesthesia, just local. (I now realize that with all the pulling, I'm lucky I didn't get nerve damage) However, I have had issues with depression for a long time that was attributed to puberty and hormones. Finally realizing that I was about to be medicated for the depression, and there was a need for medication, I decided on a long shot to try a chiropractor. I explained to him about my depression and EDS and he did a quick scan then adjusted my neck. My occipital and axis were dislocated, to the point that there was a 2.5 cm shift between the two bones, visible on X-ray, and the axis was rotated almost 90 degrees. My regular doctor had seen it because I was complaining on headaches, but it was dismissed as the cause of the headaches. The spinal cord compression from the dislocation was affecting blood flow and nerve impulses to my brain! It was incredibly scary (not that painful) to get those bones re-adjusted. I went back every day for the next two weeks to get the bones in line (now go back on a month basis). The thing is, the depression lifted within 3 hours of my first adjustment!!! It was literally miraculous. I was so shocked that I could suddenly function. My ortho has advised against fusion surgery at all costs because once you fuse one joint, the other joints around it become much more unstable as they are used to sliding in and out of place together, and once one doesn't move, the others can't attempt to re-align themselves. Though, in your case, it may be warranted. I'm not as bad with back instability yet. www.ednf.org is a wonderful place. I'm a member and go to meetings regularly. Perhaps finding a compassionate chiropractor who is familiar with EDS and does cervical adjustments might help a little bit, though you have to go back a lot to get the bones to stay where they are supposed it. Warm, gentle hugs to you. Sara

Crouching down helps me SO much! What's funny is I used to do this all the time as a kid when I was standing in line. I guess my body knew what to do. Usually I get myself supine - quick, or pull my knees up to my chest. Apparently crouching down is a sign that your heart isn't getting enough blood and that's the fastest way to regulate it. Very interesting. Sara

When I get really really symptomatic one sip of wine is often times enough to stop the symptoms completely (and usually put me to sleep). I've tried to drink more than that and I wind up buzzed so quickly (1/2 glass or less) that it's not worth it. I get buzzed even if I make sure that I drink an equal or double amount of water to compensate for the wine. So, alcohol can help me stop an attack, but I've never allowed myself to drink enough that I have symptoms of OI. Wish I could consume just a glass, then I wouldn't feel so awkward in some social situations where everyone has beer or wine and I've got soda. Sara

I don't believe that we can retrain the ANS - but I think we can control some aspects of how we react to a malfunctioning ANS. No matter what I do, my heart rate is going to rise when I stand up. No amount of fluid is going to make my EDS veins able to retain the fluid that allows my heart to function properly. That said, I think not panicking when you have a flare can help the flare be less bad. For me it's a cycle. I'm nauseous and have high heart rate from the flare, then I panic because I hate feeling nauseous, then my heart rate kicks higher, which makes me more nauseous. If I just calm down when the nausea and high heart rate hit, my flare only lasts 10-15 mins because I'm not pumping more adrenaline in by panicking. If I panic, it lasts about an hour or two. So, yes, in one way I'm "controlling" the ANS, but the initial trigger will ALWAYS be there. I think there are things that we can do that can help make us live better with our syncopes and high heart rates but there is NOTHING we can do that can change the fact that we have them. Yes, everyone has some control over their heart rate and blood pressure, but all those things are ultimately controlled by the parasympathetic nervous system. If we were thinking about them all day, and trying to control them, we could NEVER live our lives. Sandy - regarding pain as a motivator and our ability to control pain - yes, I think that pain is an excellent motivator and we do have the ability to control it. I have Ehlers-Danlos. I live in constant pain but I do not take ANY medications for it because I have trained my body to live with the pain. Pain though works differently than the ANS. (Neuropathic pain is extremely hard to control and pain medications rarely touch it- it's very different) I've tried various electrical stim units for pain and they have done nothing for me. If they work for you- great... but they do nothing for the pain that I am in - so I have two choices - either learn to live with the pain or be VERY heavily medicated. Living with the pain was the best choice for me and eventually your body adjusts. (I think the difference is acute verses chronic) The mind heavily influences pain (hence the reason why placebos work) but as for heart rate and BP, those are less under our "mental" control, and it's a very dangerous thing to think that we can control those things because Docs will jump on that and say that this disease is all in our minds - when it's NOT. Sara

Just to add to what everyone has said. I would be careful with this. Tried Florinef and felt great but I was swelling EVERYWHERE. I put on about 10 pounds in a week and my hands were so swollen I couldn't bend them anymore. I wanted to keep taking it, but my endocrinologist pulled me off it and gave me an emergency supply for when I get my period, as my BP drops to 70/50 then. If it's not water weight, great! But if it is, you need to be careful as it can add to the heart strain. (Which I'm sure you know ) Sara

I wish that they did echos while standing or sitting. My murmur is definitely audible in those positions, but when I lie down, it goes away. I think this is due to my EDS and my heart is stretching different ways in different positions. I wish I could get tested upright. I'd love to see what happens with my aorta as it is seen as small lying down.... Sara

I'm thin now. Used to be a lot heavier. I was 5'3" and 150 before I started college, and before POTS. Now I'm 5'8" and 130. Not excessively skinny, but thin. I've been told that gaining weight will help the POTS, but every time I try to gain weight, I actually wind up losing it - so I stopped trying that. My weight has always fluctuated. I can lose more than 10 pounds in a day if I'm sick. Sara

Your heart is supposed to race when you have a fever. It may be due to dehydration or may just simply be from the fever itself. Last time I was sick (about a month ago) my resting pulse rate went from 85 to 120. I had a fever of 101.7. Try drinking some more water, if you can, and maybe have some chicken soup. I hope you feel better! Sara

Well I had to take my Employee yearly physical today and surprisingly the APRN knew about POTS and Ehlers-Danlos. I was beyond shocked!! I thought I would never find that - even though this was at a teaching hospital. :-) So maybe the word is getting out there. She did however keep calling me a "poor dear", due to all my medical problems and me being insistent on finishing the PhD. I think if I had told her that I was just too sick, she would have started the disability process. She did confirm my heart murmur (only when sitting up) and also feels that I have some DeQuavain's Tendonitis (so off to a hand surgeon). My BP was 112/58 sitting and my heart was going along at 120. She said if it had been 130, I would have gotten a ticket to the ER (I think I would have just gone back to work- LOL). So yes, just wanted to share that I found someone who knows about POTS and Ehlers-Danlos. The word is getting out there!!! Sara

Have you thought of turning up the refresh rate on the monitor. I find that I can notice if the monitor refresh rate is low and that will give me one heck of a case of the dizzies. Try turning it up to 75 Hertz and see if that helps. If it is high, try turning it down. Also you may not blink when you're on a computer, so try taking "blink breaks" where you focus on something in the distance. Good luck! Sara

Just had to comment on this... I have a pituitary growth that I call Fred. LOL! Sara

Aha- I see you've met a psychotic psychiatrist. Seems there are a lot of them around, and I've met my fair share. Had one when I was 8 (didn't want to go to school due to an abusive teacher) who promised me that he wouldn't tell my parents what I told him and then promptly did so. Also asked me numerous questions that I refused to answer because I felt they were too personal (and extremely sexual, now that I look back on it) and he informed my parents that I needed to be admitted to a psych ward because I wouldn't answer his questions and was obviously defiant and unstable. My parents asked me what questions he had asked, I told them, and never saw the creep again! He had apparently tried to proposition me, but I didn't know that then. We should have reported him, but my parents decided not to, and they, instead of deciding that I had a problem, decided the school did and things were remedied. He was eventually stripped of his license when it was found he was sleeping with his patients (THIS WAS A CHILD PSYCHOLOGIST). So many doctors, and psychologists, shouldn't be allowed to practice. It's really scary. And they can do so much physical and psychological harm. It's amazing how many malpractice claims some doctor can have against them, and nothing is done. Good luck! Sara

Strange thought, mkoven, could the chest pain be purely positional as well? I have ehlers-danlos, and though a distinct heart murmur is heard when I am upright, no such murmur can be detected on Echo, as they are done lying down. You may have the exact opposite. I get severe chest pain if I am up too long- you may be getting these pains when you are laying down too long and then stand up, forcing your heart to move into a new position. I look at it this way, if all my collagen is disorganized, and there is collagen in the heart, that too can get overstretched or move in ways that it shouldn't. Just a thought. Sara

When I had my last tilt, I had to be given oxygen because I was having such trouble breathing when I was tilted upright. Without O2 my pulse jumped up immediately upon tilt to the point where I had to be lowered to "try again". On a decent amount of oxygen, this immediate rise didn't happen, though my pulse did go up, but not to the same point. Anyone have to be given O2 during the tilt? I looked this up today (bored at home, attempting to drink a ton of water for an ultrasound) and came across the term orthostatic dyspnea. Has anyone been diagnosed with that? Who should I see to get this treated, if it's treatable? Sara

Ann- Some people have had some luck with natural black licorice. But check with your Dr. Sara

Angela- Oh my Goodness! I hope you feel better soon and am sending warm thoughts and well wishes your way. Sara

If you feel safe that the CPAP will compensate for the shallower breathing, I would give it another shot. I personally have asthma and refuse to take BB, as I don't notice when I'm having an asthma attack until it's too late and I stop breathing. (This is due to years of being undiagnosed, and my body got used to not breathing right). I've had cardiologists yell and scream at me over the fact that I won't take them - denying that my asthma is that bad! Finally I talked to my PCP and he said that BB are contraindicated in cases of asthma or severe allergies and that I should never, ever take them. As for telling the doctor, perhaps say that you were nervous about taking them, and waited until a SO or a friend could stay over in case there was a problem? And go to the cardiologist if you want to. As long as you keep your PCP in the loop most are very willing to have you see specialists (especially if the PCP is a decent doctor). Sara

Have you thought of taking them off after 12 hours, and then trying to stick them back on, maybe with a soft gauze wrap or something? This way you would get one every 3 days, but you would be able to use them every 12 hours. If you place them on areas of your body that you can wrap something like an ace bandage around, the medicine dose should be the same. Maybe you could even put them in the fridge overnight so they don't lose as much stickiness or some of the medication. Just a thought. Never used a fentynal patch... Maybe this isn't possible and once they are unstuck, that's it. It sounds like you are unable to clear the drug fast enough from your system- hence the overdose type reactions at 12 hours. Sara

Weird! I get this too. That's how I know I'm going to be having a really bad time- when it smells like burning. It's usually a short-lived thing and just never associated it with the POTS attacks before. Interesting. Sara

I was told that I have reactive hypoglycemia as well, but my numbers are nothing like anyone's here. Within 1/2 hour of drinking the sugar solution, my BG dropped from 80 to 60. Over the next few hours it climbed up to 84. I was told that this was reactive hypoglycemia, but my numbers never went higher than 84. What do you all think? I'm feeling that this was perhaps just my body reacting to more sugar than I've had in a LONG time. Sara

I was diagnosed with neuralgia after a car accident. Thankfully that pain did eventually go away on it's own as I healed. I was given neurontin for it. The pain is SO intense. It felt like pins and needles and I couldn't stand to have anyone or anything touch that section of skin (this was on my side - made getting dressed interesting). I went from completely numb, to the neuralgia, to mostly normal but slightly diminished sensations. I don't know what the solution is if the pain isn't due to a traumatic injury. Good luck and hope you get better. Sara