morgan617

Lots of thin ridges, very thin and peel like crazy, fragile and grow very slowly. Quite ugly, actually....morgan

I had symtoms before, but actually the best I felt was the second trimester. The first and third were awful. It took me forever to recover. My H & H was 24 and 6 after my second delivery, although I didn't bleed excessively. I never felt the same after my pregnancies. But wouldn't trade my boys for anything. morgan

I'm sorry to hear this. My son was denied SSDI for the second time today, so he has to decide what he's going to do. It's a horrible situation for you. Wish I could say something that would help, but all I can say is, I understand...morgan

I'm not sure I understand either. If the heart is beating too fast, it doesn't have time to fill with too much blood, that's part of the problem. The heart will beat too fast trying to get more blood in to circulate, not because there's too much. I would get the results and get a second opinion. I know it is a two edged sword, getting a diagnosis, especially if you've been looking a long time for one, but then finding out it's chronic. I have taken care of a fair amount of people on betas with lung problems, so it shouldn't be completely ruled out. I know nothing about EDS, however. I went from working a 14 hour day, to disability the next, literally. It's a long story, but if you can't work, you need to file for SSDI as soon as possible. Most of us have been where you are right now, and it's pretty scary for sure, but there things you can do. You need to decide if you can work and if you just can't, that's just the way it is. As a person who has lost just about every single thing in her life, I can tell you, you do get through these things. Right now you are understandably in shock and need to get through that. The first thing I would do is get a second opinion and then get ready for the wild, frustrating ride that is pots. morgan

First of all Cindy, welcome! Secondly, I'm not sure why wikpedia said you are gpoing to die of sudden cardiac death! You may feel like you are at times, but POTS is typically a chronic long term problem. Some people get better, some slowly worse, and some wax and wane. There are lots and lots of various symptoms and your best bet is to look at the info on this site, as opposed to wikpedia. There is an abundance of information here. With all your problems with menses, conceiving, etc, has anyone looked at polycystic ovaries? The problem with pots is that so many things can over lap, symptom wise. Depending on where you live, (sorry, I didn't look to see if you put that down) most people see a neurologist, cardiologist, endocrinologists. The most important, however, is a good primary willing to work with you and other doctors. The largest percentage of us have had many struggles in finding good doctors, or even a diagnosis. You will learn patience, if nothing else! Hopefully this is a starting point for you, but I do want to assure you, that wikpedia is misinformed. morgan

Exertion is one of my worst triggers for symptoms. Needless to say I have flabby bat wings everywhere by now. My bp was never below 180/100 for about 4 years. Now it drops like a bomb out of the blue, from 140/90 to 90/40 in about a minute. I never know what it is going to do. I started having syncope because my heart rate was dropping from 130 to 30. Since my pacer, that has been better, but I still get the symptoms. morgan

I guess since I'm still waiting for anyone to confirm anything with me, I haven't had to deal with an actual diagnosis and the mixed feelings that come with them. However, at this point, I don't need a doctor to tell me I'm sick. It's like a big DER. I have just gotten so used to psych diagnoses, I don't even blink at those anymore. I'm sure it must be hard to know you have what may be a long chronic illness, but I think somewhere inside of all of us, we already know it. I think only of a bit a validation I would feel, and it doesn't strike me that I would be upset by it. But, since I will never get a straight answer from anyone, I can only go by my experiences. The really positive thing I see is that your husband had an aha with it, and that may prove to be the most positive thing of all, and will hopefully help in the future. morgan

Geez, that makes me want to get my hepatitis titer rechecked. I knew they were starting to recommend some boosters for adults, but didn't realize it was pertussis. It's pretty scary isn't it? Sometimes I think we get too comfortable that we have eradicated all these things. I remember getting the small pox vaccine, and no one thought anything about it, now people fight it tooth and nail when going overseas, but it isn't given anymore and some third world countries still have it. Makes you wonder.

I just want to know what's up with the pertussis? There is an immunization out there for this, so why are people contracting it? Babies tend to get antibodies from mom if she is breast feeding and kids are supposed to be immunized before they are allowed in school. In Idaho, in the north (where many odd people live, like aryans and people who hide from government conspiracies) they don't get their kids immunized and there are some cases every year, but they are contained in very remote areas. These kids don't go to school, they are home schooled, because they won't allow them in without the shots. I just find it really weird. Anyway, I hope the baby recovers very quickly and you don't contract it....morgan

Amy, you are in my thoughts and prayers. morgan

Congrats Lisa, what a long road! Maxine is right, it is bittersweet, but it is definitely some weight off I'm sure. morgan

Gad, I'm 53, I should have been over this 10 years ago!!!! According to your doc. I am still wondering how you can get percetages on mental and physical health. It has actually become a huge joke in my house and we all get the giggles over it....is this your 20% moment Deb, or your 80% moment????

Hey Jennifer, good to hear from you! Glad your trip went well. Hope to start hearing from you again, or if you are cured, hope you don't need us!!!!! morgan p.s. if you are cured, please share that

I saw my muscular dystrophy doctor today. She said I am only 20% conversion disorder and 80% really sick. She is writing a letter for the ER saying that although I have psychosomatic problems, I really am sick. Think that's going to help if I go there folks?......I give up....Now I 've percentages on how crazy I am...my life is complete and I can die happy....

Guilty, but I'm very short and my legs dangle a lot, which is not comfortable. It's hard for me to sit still (unless paralyzed) because I always seem to hurt somewhere, but find if I sit crossed legged, it makes me very light headed. I do it sometimes anyway, without thinking...morgan

I haven't been able to tolerate any SSRI's, but my son, who shows OI symptoms has done well on several. He started on Paxil and never had any problems, but after several years, they felt he have become "tolerant" to it, and was switched to Celexa, which he also did really well on, except he could not raise the dose past 20 mg, without becoming really ill. The Effexor was a total nightmare, but he started on Lexapro and we have noticed a huge difference in him. He was started on a fairly high dose to try to counter the effects of effexor withdrawal, but just tolerates it really well. No weight gain, no sleepiness, no weight loss. He is really pleased with it. It seems if a med gives me bad side effects, no matter how long I take it, they just won't go away. The SSRI's just seem to exacerbate the symptoms I'm trying to get rid of by taking them. I wish I could though, it would be nice to lose some of this sadness....morgan

I've been having 3-7 bowel movements a day, with absolutely no idea where this comes from. I am actually due for a colonoscopy, so maybe will see what the deal is. And yep, it's something to mention to the doctor....morgan

Dizzy, have you contacted the Muscular Dystrophy Association? They are the ones that are supposed to deal with paralysis. There are a lot of triggers for it, such as salt, carbohydrates, hunger (not eating, even if you aren't hungry) etc. I can't tell you anything about chiari at all, but I can tell you I get miserable headaches when my potassium drops. I did not need a referral, just sent the closest one to me an email and got in quickly. You might want to try that, if you haven't already. I have found that so many of my problems are tied into PP, autonomic and otherwise. I'm sorry you are feeling so poorly, been there, am there. morgan

glad you don't have MS! I have a friend that has lesions and her neuro told her it isn't unusual, they are often found incidentally when looking at other things, especially during middle age. She had arm numbness and stuff and they never did figure out what it was, (ruling out MS also) but it went away. Any way he said many people have have small lesions that don't seem to be indicative of anything, but who knows. morgan

Mary, I take 50 mg of atenolol at bedtime, which helps with the daytime fatigue. I worked up to that dose. I also take a low dose of valium, which I was initially given for my inner ear disorder, but discovered it helped with the hyper surges. I had to try a whole lot of meds before we found atenolol to be the best. It controls my bp pretty well, which has a tendency to sky rocket out of the blue, which is no fun at all. I still get break through tachy and bp spikes, but they are better controlled. I have an unrelated disease that has a huge affect on my autonomic system, and so take a lot of potassium. But this is done under a doctor's orders and carefully controlled. I don't do anything that's not regulated, because I figure as intolerant as I am to regulated stuff, it's really terrifying to me to take something with no regulations placed on it. This is a personal choice and holds absolutely no judgement about anyone on here that uses natural remedies. I also veer away from salt, the opposite of many here, because it does contribute to my high blood pressure. That's it, they know of nothing else. I had cardiac ablation in 2003, which actually caused my bp to not flucuate at all. I guess since for a short time it took away the tachycardia, my body tried to keep things in check by jacking up my bp all the time. My constant bp was never below 180/110 minimum. Over time, the tachycardia has returned and my bp has become paroxymal again. But on the atenolol, it hasn't gone that high again. morgan

Atenolol actually increases my fatigue, but the benefits far out way the side effects. Sorry, jumping in late here. My primary and cardiologist had a big fight over my TTT. The cardio said it was negative because I didn't faint and my pcp said you don't have to faint for it to be positive. I went with my pcp. my lying was about 150/90 100 tilted was 170/100 130 after 5 minutes They gave me a quarter dose of Isuprel and my pulse went to 180 and bp 200/120 I felt crummy all day.....It was not fun, but they argued that because my bp went up so high, it couldn't be an OI problem......so my pcp said he felt I was hyperandrenergic and it was probably a baro reflex thing with me. But no one has ever given my any specific diagnosis, ever. I told them I would never have another one, but I know that many people have had several. But since they do it and have no idea what it means here, it seems a bit silly for me to do it again. I'm glad you are feeling better, sweetie! morgan

Yeah, Julie, the H2 blockers are now widely used for people with chronic hives and allergies. They've gone to pretty much using the proton pump inhibitors for reflux (prevacid, protonix, etc) and now are using the older reflux meds for allergy stuff. My sister takes Zantac for the same thing. I have found that drinking club soda, not to be mistaken with tonic water, which my husband has will help get the burps out even better than gas x or phazyme. Those drugs, for some reason make my reflux even worse. The club soda doesn't seem to bother me and I don't have to drink much. We even found a salt free brand at Albertson's. However, almost everyone else here eats salt like there's no tomorrow. It helps me probably more than anything. I have pretty bad strictures really high up in my esophagus, so guess we have similar symptoms, but for different problems. My throat closes up, but it's spasms and strictures. It's horrible and scary. I'm sorry you are having this problem, sweetie. morgan

My son is 26 and has been sick since he was 11 with arthritis. It is progressive and he has many other problems associated with it. He went out with some friends the other night (he has never had a girlfriend, because he is afraid to put himself out there, so cautious) and said, mom you will never guess what happened. He was talking to a girl he had gone to school with and she told him she had arthritis. The same kind he has (she was unaware he had it) he said No Way, because he's never met anyone his age with the same kind of problems, let alone a girl. She, of course, thought he was questioning whether she was really sick. She got annoyed and told him to "look it up" it's real. He realized she thought he didn't believe her and quickly cleared that up, and they had a good time. Her's is a new onset, he's had his for 16 years now. He knows what she is facing, but didn't say anything, except he understands. My point here is, (and I do have one) when we are ill, it becomes very easy to misinterpret or become defensive, when people say things. She obviously doesn't look ill, but very obviously has had people say that, so automatically assumed my son was invalidating her. I guess this is what I'm talking about when it comes to walls and things. We assume no one will ever accept us as we are, sick, pudgy, shy, afraid, whatever. I believe we have a right to be defensive, as we tend not to be treated well by doctors and sometimes family and friends. But that sure doesn't mean everyone is going to react that way. You never know when you are going to meet someone, who's going to say No Way! And it's because it's okay, they get it, or at least don't care that you have it. If the girl had been comfortable with her illness, she may have just waited a moment and given him time to explain he had it too, or not taken it as an invalidation, but I think we reach a point where we assume no one believes us or could ever love us. That just isn't so. As hard as it is, we have to sometimes stop and figure out whether we are over reacting or not actually hearing what the other person is saying, just what we believe them to be saying. Open minds. Have I made my point? Maybe not, articulation is not one of my finer points anymore. I guess I am saying, never assume stuff. Give a person a bit of the benefit of the doubt. My son never thought he'd meet someone who understood and obviously this girl didn't either. But there you go. He came home knowing he wasn't alone and feeling better about himself. So, you never know when it's going to be an opening and not a slammed door, so we can't assume all is a slammed door. Sometimes we get very lonely, but we get so comfortable being lonely, it's too scary to think about not being in that place. So we assume things that aren't true to justify staying there. it's very hard to let our guard down and leave that comfort zone. But I have seldom had regrets over the times I have, whether it turned out well or not, because i know I at least tried. That is not to say I haven't cried an ocean in my life, but looking back, I know I have learned from my experiences with relationships, whether they worked out or not. So keep your mind open and the door in your heart cracked and peeking. You never know when when it's going to want to burst open! morgan

Have you tried H2 blockers, like Zantac or Pepcid? They work as well as Benadryl, without the sleepiness and other side effects, for allergy control. As far as burps getting stuck, it happens to me all the time. Only it's down in my belly, then I will eructate like a volcano or something. It's very uncomfortable. I haven't heard of low grade anaphylaxis, so can't help you there, other than histamine blockers. morgan

Sometimes I think it's not a question of whether or not there is someone, but rather, are we willing to make ourselves vulnerable enough to find out? I think when we have been sick and mistreated, we just naturally develop trust issues and build walls. Add any type of traumas and it starts to feel like a mine field out there in the world of relationships. That being said, however, I think there are people out there for everyone. Not everyone finds their "soulmate" but certainly someone to share your life with and be very content with it. The fireworks are nice, for sure, but remember that fireworks burn out quickly. I was reading an online advice column yesterday and this gal was saying she met this guy and everything was perfect except for one thing. He doesn't like opera or something and she does. So should she stay with someone who doesn't share that particular love with her??? If this is what we strive for, absolute perfection, we will never attain it. There are plenty of good hearted loving people just as willing to deal with our warts and all, as we are open to dealing with theirs. With as much as I have been hurt in my life (and believe me it's a lot) I still believe in love and that we can all find it, usually when we least expect it. We just have to put ourselves out there and leave ourselves open to whatever comes. Easy to say, so much harder to do. I have been married to Dave for 27 years. At times he drives me crazy and I know I do the same to him. I am certainly no picnic to live with, but he has remained steadfast in his love and faithfulness. Even more so in these last few years. So I say to Emily and Ernie, yes, there are good men out there, or women, or potential significant others, so never give up! Some people say they are quite content to be alone, but I don't really think we are creatures that are meant to be by ourselves. I believe there is someone there for you, and you need to believe that too. There are so many people that are willing to look past our limitations and see what we are inside. We tend to get tunnel vision I think, but sometimes to get what we want and need, we have to get brave enough to go outside the box. You are wonderful special people and and there are fellas out there who are meant to see that. morgan