delphicdragon

Probably TMI I don't know what to say regarding this. I was LOVING my NuvaRing and couldn't say enough about it. Then I noticed that I was getting really tired and sore all the time and my period was incredibly painful. I couldn't remember if it used to be that painful, but I had to skip a day of work due to cramps (which was very not like me). So I stopped it. I was absolutely shocked how much better I felt. My constant headaches, which I had attributed to a pituitary tumor, were GONE within a week. My energy went up, though I am still sleeping a lot. I'm bleeding less during my period with much less cramps. Now I've only been off it for 2 months, but I feel much more normal. I actually worked 10 hours today and can function. I'm tired, but not exhausted. I had ZERO luck on Ortho TriCyclen Lo, bled the entire month. Seasonique caused severe intestinal distress. I think I'm off it for now. I was supposed to take it for ovarian cysts - but now that I think of it both times I had an ovarian cyst "discovered" was right around the time I ovulated. Sara

Three things. 1) The extra stretchy skin is a hallmark of the Classical type of EDS. There are multiple subtypes, including hypermobility, where the stretchy skin is not so pronounced. 2) In my (by no means expert) opinion, a collagen disorder with symptoms of joint hypermobility is most likely EDS. I am SHOCKED that she gave you that stupidly vague diagnosis!!! There are other collagen deficiencies (Marfan's and Osteogenesis Imperfecta) but you sound like you have EDS, as the ones I listed are more severe- though look into them to be sure. Sometime people think that you need a family history to get a diagnosis - my father was diagnosed AFTER me, and he didn't have hypermobile joints but he did have fallible collagen. The penetrence of a disorder is how badly it effects someone. I'm pretty bad, my father was less so - though he was diagnosed after having multiple failed knee replacements due to the joints loosening. 3) Hiatal hernia along with GERD and IBS are also typical in EDS and other collagen disorders. I would get a second opinion if possible. Test yourself with the Beighton scale. If you're an 8 or 9 out of 9, it's more than likely you have EDS - though the diagnostic criteria is 5/9. Sara

Sending prayers and big hugs out to you. I don't know much about Bi-pap and it's relationship to a ventilator, but I think it's a breathing machine like C-pap used for sleep apnea designed to get more air into the lungs. pCO2 has normal values between 35 and 45. So, she's still retaining CO2, but not nearly as bad as yesterday. I would think the Bipap is helping. Best wishes during this difficult time. Sara

Thanks for the well wishes everyone!!!!! I'm not 100%, but back to a baseline. Actually went to the ER Friday night because the pain was SO bad in my hip. I was seen right away, which was good, but no one knew what to do with me. I mentioned Ehlers-Danlos and they just nodded with ZERO comprehension - I didn't dare mention POTS. (What was funny was in severe pain my BP was 128/77 - so I guess it was probably running low beforehand.) My shock however didn't end there - I had to get X-rays and the X-ray tech took a pic of my pelvis and said it was crooked. I replied that that was probably the reason for the pain. She said "we can't have pictures like that - your pelvis needs to be straight" and before I knew what was happening, she took my poor injured leg and pulled it!!!! A loud pop ensued and she looked panicked and quickly snapped another shot. After which she told me my pelvis was now straight, so she didn't have to take any more X-rays. Well the intense pain stopped after that, which was nice, but I don't like my joints being relocated by inexperienced people. I got lucky she didn't pull it all the way out and dislocate it in another more painful position. I'm a little upset because the X-ray tech didn't SHOW the doctor the crooked picture, so he diagnosed me as having a muscle strain, not a dislocation. OI! Sara

Hey, I figured since a lot of you have concomitant EDS along with your POTS (oh Joy, right?) this might be a good place to ask a question related to EDS. I slipped two nights ago on some sand. Barely slipped, just got knocked off balance for a bit. Went to bed without much pain, and woke up virtually unable to move my right leg. I saw my ortho yesterday and was told that I either irritated the gluteal bursa (the one that lets you sit) or tore a tendon in my hip. It's NSAIDS and rest for the next week until I see him again. I've got a couple questions for those EDSers out there. 1) Have you ever injured yourself without really "doing" anything? Up until this time, there was always a true cause. This time I had a really hard time pinpointing what happened, and can only trace it back to the little slip. 2) How do you handle the embarrassment factor/ explaining to everyone what happened? Maybe I am more sensitive than most as I was teased unmercifully during childhood for always getting hurt and never being able to run and play. (I was on crutches for 6 months in 4th grade to try to heal an ACL tear) I hate that I am on crutches and will throw them off to the side if I can get around without them. This time the pain is so bad, I can't. I'd rather deal with the invisible illness of POTS sometimes because you can just say you have a heart problem and no one questions that. Thanks. Sara

Worth it to get tested. It's an explanation at least. For me, my EDS causes my POTS. At least this way I know (95% sure) that the POTS won't be progressive. That's a relief for me. Also, I wanted to learn how to protect my joints so I don't do more damage. My hips and knees are pretty messed up and it's moving to my elbows and wrists.... This diagnosis also explained why I was always getting hurt in school (I have no proprioreception (sp?) basically I don't know where my limbs are in space - very typical of EDS). My skin isn't overly stretchy either, but it isn't normal, that's for sure. And though my scars aren't too bad (they are small, and leaving the stitches in 2X as long helps) they are very strange... (look up cigarette paper scarring) The appt should be easy, I had to show that I too am a 9/9 on the Beighton scale. Though you can get a diagnosis of 4/9 and still be classified as having EDS, esp if you are older, or arthritis has set in. I also need to get echos of my heart/aorta because of the EDS diagnosis, but these are also painless (just cold gel). Sara

Anecdotal Evidence shows that nicotine increases BP and can actually be used as a POTS treatment. Have you tried Nicotine gum or something similar? That might give you the effects you need without doing harm to your lungs. I'm not sure how it effects the baby so I would ask before trying this, but it's a thought. I know tiny amounts of alcohol (one sip) can help me get through the panic attack part of POTS. I think it calms down my nervous system, b/c my bp tends to be stable. I wouldn't call it a panic attack explaining it to your neuro. I've been advised not to call them panic attacks (by my endo) but adrenaline rushes or POTS attacks. Both won't get me a ticket to a psych. Good luck. Sara

I think you probably have reactive hypoglycemia, especially since yours takes about 2 hours to drop. I think you need to see your doctor and get your blood sugars stabilized. Perhaps you need an additional med to help moderate this. Mine takes only about 30 mins (sometimes less) to drop into hypoglycemia, then it slowly goes up and stabilizes. It basically does this... 30 min == 60 <-- hypoglycemia 60 min == 70 2 hr == 80 3 hr == 83 4 hr == 83 I eat every 60-90 mins. This way my stomach is never really empty and I'm never really hungry. No one's figured my blood sugar out yet, and this eating schedule works out pretty well. Sara

(((((((((((((((((HUGS))))))))))))))))))))) We (My mother and I) planned my father's funeral last April. He passed from pancreatic cancer. I am so sorry you are going through this and send prayers out to you during this difficult time. Funerals are expensive. Dad was cremated and we still spent close to $4000. Social security paid $250, the rest we had to cover. My advice is simple. 1) Find a funeral home that you trust. They will help you out immensely in all the planning. You can choose what you want before the person dies and they will carry out your wishes. If your mom is still cognizant, perhaps you could ask her what she wants. Dad and I had a long conversation about what he wanted before he got very sick. He chose to be cremated, even chose the funeral music. 2) There are people at the hospital / hospice who can help you. They will tell you what you need to do and help you get the resources you need, including counseling for you and your siblings. If your mother isn't in hospice, see about getting her admitted to the program. They will send nurses to the house and help you out. We, personally, did not have a good experience with hospice, but there wasn't much they could do for the pain when my father refused morphine. If you do get hospice, make sure that the nurses are on the same page as you and your mother. 3) Talk to your pastor or church if your mother has one. They can help too, and provide religious support for both of you. 4) Take time for yourself. Remember to eat. Remember to breathe. Remember that even when your mother is gone, she's still there for you. Sara

Poppet- Just out of curiosity have you been checked for Lupus? It's a blood test, I think, called ANA. Joint pain plus a facial rash are almost diagnostic for Lupus. I'd see either your PCP or a rheumatologist. Yes, I know that the last thing you want to hear is "go see ANOTHER doctor", but I would really recommend that you do get that test, at the very least. I know you want to be done with doctors. I want to be done too, and I would recommend that you take a break for a month or two to just regroup (after you make one more appt to ask about Lupus). Good luck! Sara

I know that exercise raises BP. This is normal and what is supposed to happen. I had a stress test and my BP got to 160/110; and according to the cardio who was standing next to me, that was a normal response (though it usually took people more than 9 mins to get a heart rate of 200). What I've found with my BP is it spikes right before it tanks. During my first TTT, I was having all the symptoms with a BP of 140/90 and a heart rate of 140. They kept me standing and my BP dropped to 90/0 and I was quickly lowered. The heart rate topped out around 150. You may have just caught the spike. I have the extremes too. Usually my diastolic rises to meet my systolic. Instead of 110/60 I get 110/90. Yesterday had 89/71! Sara

I've got hypermobile EDS. There is no history of aneurysms in my family, but there is a history of organs going "pop" under minimal pressure. If you do not have either as a history, you probably do not have a vascular component to your disease. That said, you need to have regular echocardiograms looking at your aorta. This is really important. I get one every year or so, just to make sure it isn't widening. I do see the POTS as a vascular component of EDS, but not one of the typical dangerous and deadly vascular complications (Abdominal Aortic Aneurysm is the big one) . My veins just stretch more than they should, as does my heart, hence the POTS. Sara

Be warned. addictinggames.com wellgames.com bored.com also, for comedic relief... fmylife.com lamebook.com <-- funny if you know about facebook cakewrecks.blogspot.org peopleofwalmart.com lovelylisting.com I spend too much time procrastinating. I also write novels. That helps pass the time, as does reading. Sara

Add me to the list! I always figured it was the force of the sneeze that caused the odd feelings. I'm a very loud sneezer. Repeated sneezing is the worst. I think it's related to the valsava maneuver too. I failed that part of autonomic testing. Sara

PROBABLY TMI!!! I'm the opposite. Orgasms help my POTS and can even short-circuit the adrenaline rushes. The relaxation afterward seems to be most beneficial. Worst thing that happens is my hips and/or sternum dislocate, but that's the EDS not the POTS. The boyfriend has gotten used to that. Sara

Bleach makes me really sick. I seriously can't handle any cleaning smells. Last time I cleaned with bleach, I was so nauseous I had to lay down on the floor, couldn't even make it into bed. :-( I found cleaning with vinegar and water doesn't aggravate my POTS as badly and I can get things reasonably clean. Baking soda works as an abrasive. (Though if you use them together you get nifty bubbles/foam) If I need to use bleach (had to over the holidays - roomie left rotting food in the fridge when she went on break) I call in my friends to clean for me. I've found that since I'm a decent cook, my friends will clean if I make them either a meal or a cake :-). It's not worth "gassing" yourself to get stuff sterile. Sara

Hey Everyone- My father passed away April 30th of this year from Pancreatic Cancer. This is my first Christmas without him and it's been quite rough. I'm hoping you can all give me some advice on how to get through the holiday. Thanksgiving didn't go so well this year. I was supposed to visit with my family and my boyfriend's family but had such severe panic attacks before the dinner, I had to cancel going to the boyfriend's. Christmas puts me in a bit of a quandary. I have church at 4:30, dinner with him at 6 and desserts with my family at 8:30. This is complicated for anyone without POTS. I had my saline today to try to augment anything that might happen (I was not on saline for Thanksgiving), but I'm scared!! I want to be able to enjoy Christmas WITHOUT the panic attacks. Help! Sara

I agree with KC. A little dab'll do ya. For diarrhea, all I need to do most of the time is take a 1/4 tsp of Immodium, and then I get the problem you've been experiencing.... Have you tried glycerin suppositories? Or Citricel? I had bad issues with constipation most of my life and these two worked rather well without causing autonomic "junk". Sometimes chewing gum or drinking seltzer fast will get things started. Also, you might want to try eating the "p" fruits. My mom called them the poop fruits- plum, pear, peach, prune.... Sara

I'm sitting here today getting my IV saline (yeah for internet in the infusion room). Wanted to share a story from this morning. I drove in today and I have a handicapped sticker for my car. In order to get into the hospital area handicapped parking you need to go through a guard station. I have NEVER had a problem getting through. Today, the guard had the gall to ask if I "stole my grandmother's handicap sticker!!" Excuse me! Believe me, I hate using the sticker, but I need it! Well, I reported it immediately to the receptionist at the desk and filed a formal complaint with security. He's been given a written warning and a two day suspension. I feel good honestly. It's one thing to take this crud from those in society, but when you work at a hospital, come on!! I feel good for standing up for myself too. Now here's hoping the saline will help. I've had 200ml thus far and I can feel the brain fog clearing. Sara

Take the systolic blood pressure (the top number) and subtract the diastolic blood pressure (the bottom number). So and BP of 120/80 = 120 - 80 = 40, has a pulse pressure of 40. You want a number around 40. (I'm usually okay until about 25 or so) Here's an article for your reading pleasure... http://www.lumrix.net/medical/cardiology/pulse_pressure.html Under 20 usually means that blood isn't getting where it needs to go. I've had 10-15 before, which stinks. Sara

I saw my endocrinologist today and brought this up. She's pretty sure I'm not having panic attacks. Said panic attacks should be a diagnosis of exclusion!! Which made me feel really good. She thinks my autonomic nervous system is acting up due to my not being given IV saline for the past 2 months. Told me to take my blood pressure when I start to get these feelings and see what it is. I did tonight. 105/86. A pulse pressure of 19!!! No wonder I'm feeling awful. I took it again after the feeling had passed and it was back to normal. At least things are starting to make sense now. She's put me back on Florinef and on IV saline :-) to try to get things in balance. I'm hoping the saline will help as I black out every time I stand up. Hope the IVs get the "panic" to stop. Sara

Ah shucks! NW Ohio isn't closer to me. :-( I think that's the big problem with medicine - ignorance. The doctor's don't know about it, so they're afraid to treat it, or they think it's benign when it isn't. Sigh. Waiting for medicine to catch up with molecular biology and waiting for molecular biology to catch up with life.... Sara

The reason it feel like anxiety is because the POTS reaction we go through exactly mimics a panic attack. Standing too long causes a rush of adrenaline. This rush is meant to prevent us from passing out because our blood pressure is too low or we're hypoxic. When you have a panic attack, you get a rush of adrenaline too. This was meant to allow us to escape if we were being chased by a lion or something. With panic attacks the trigger could be a thought or a smell. With POTS it's our brain's craving oxygen. Once the adrenaline is released, we get tachycardia, nausea, pain, difficultly breathing, etc. The adrenaline rush was meant to allow us to run away - so we feel like we're running, but nothing is chasing us! It's an evil system. What's awful though is if Doctor's see us with panic attack symptoms, they assume that's what we're having, not an adrenaline rush. They assume a psychological cause, not a physical cause. I had a seizure due to my blood pressure being 0. I was diagnosed with anxiety because they must have "read the reading wrong" and when my position was changed (feet up in the air, my BP came up) It's ignorance on the part of the doctors. If you go to the ER, have someone who supports you go with you so they can explain what's happening. When the cardiac symptoms get bad, I go to the hospital that has my endocrinologist (who treats my POTS). Though she usually brings the entire cardiology wing down to "learn" about POTS, she makes sure I am treated with respect. Having an advocate helps. Sara

I think with the right wording, a doctor can make the insurance believe that a C-section is necessary. Pushing is very similar to the valsalva maneuver - which can make some POTS patients pass out. I can't imagine fainting during labor is good. Personally, I have been told by my orthopedist that I have to have a C-section, as my hips dislocate randomly. I can't imagine trying to push out a baby, passing out randomly (with massive tachycardia) and a dislocated hip. Sara

What an awesome and productive visit!!! I completely agree that the media portrays it as a side-show which stinks. I'm tired of people (doctors especially) saying that I'm like the "indian rubber man". Yes, I am, but there is so much more to the disorder - including PAIN and DAMAGE. How nice to have a competent geneticist on your side. I'm thinking of finding one that knows about EDS, but the one who diagnosed me was about 70 miles from where I am now. Great to have someone in your corner Sara (PS- What part of the country are you in? I'm in the Northeast - perhaps your geneticist might be close to me)