morgan617

Friday, I had a hyst at 31, but kept my ovaries. I have been on estradiol for 8-10 years with no problems. Prempro is normally given to women who still have their uterus, because as long as you have a uterus, you need it to keep the lining of the uterus thin. If the uterus isn't there, I'm not sure it makes a huge difference. Progesterone is the drug most problematic for women. As far as symptoms go. There is lots of controversy over the studies done and what's best and what's not. I didn't tolerate premarin, but feel awful if I don't take estradiol (estrogen). I tried the bio identicals and they actually made me sick, so I just go with what works and doesn't make me worse. It's like everything else, you just have to keep trying till you find what works for you, and not what works for others. The hope is, we take hormones till the acute symptoms get better, then we can wean off, but some people never need anything, and some need them forever. I think everything carries it's own risk, whether natural or synthetic. It's about what you can tolerate....good luck sweetie. morgan

Mary, what kind of an event monitor do you have? I've never heard of one that goes off by itself. You should push it anytime you have symptoms. Throat tightness, any of the things you associate with your heart or POTS. Sometimes you don't feel the heart doing anything, but your body is responding to it doing something. morgan

My son has to do the gummy vitamins (I can't seem to find any I can take) but his doctor said, the gummies are fine, if you eat any kind of a balanced diet. So if those work, I'd just stick with them. They are better than nothing.....morgan

Feel better soon, Amy. You are in my thoughts and prayers! morgan

Thanks Michelle! morgan

I've had fibro for 32 years now and have never used anything for the pain, which at times, has been pretty darn awful. I guess I'm glad now, because it probably wouldn't have helped and I would have become dependent on something that wasn't very useful to begin with. One of the reasons I have never taken pain meds is because of the stigma associated with fibro, and the "addictive" behavior of us. It is refreshing to see more and more research disproving the stereotyping. Thanks doctorguest! I know we still have a ways to go, but every milestone, no matter how small, is a good thing. morgan

Suzanne, I had a hyst in 1986, long before they were laprosopic. I kept my ovaries, as I was 31 and felt I was too young to lose them. They found them covered in endometriosis, so that wasn't a great choice on my part, since I continued to have discomfort from that, but other than that, it was fine. I was driving in 2 weeks and working full time again in 6 weeks, even though it was an abdominal surgery with the big incision. I never had the problems voiding. I was not as sick then as I am now, but I was definitely not healthy. I have never regretted my decision and wouldn't have, even if it had taken me longer to heal. It was so worth how much better I felt in the long run. Any doctor should tell you that it actually takes the body 6 months to totally heal, whether a surgery is laproscopic or wide open, and everyone heals at different rates. I hope all goes smoothly for you and you perk up quickly and are back at your baseline soon. Just remember, it takes as long as it takes for each of us. Like anything else. good luck sweetie! morgan

I don't believe they are that uncommon. I know two people who have the auras without the headache. My husband and son have the pain without the auras, but would switch in a heart beat. On the trust issue, it's okay to disagree with a doctor, but it doesn't have to ruin the doctor/patient relationship. My pcp and I are like an old married couple, and we argue, but I trust him with my life. I tell my doctor I will agree to disagree and we need to move on, and he will agree with that. You need to have a doctor you can be open with, but he/she also needs to be able to be open with you. There are migraines that do not cause pain, so it's not as though he was blowing you off, it was a legitimate diagnosis. We've all had those visits where we walk out wondering what the heck just happened, but this doesn't sound like one of those types of visits. I hope you can get this worked out and find someone that you really can trust, even if you don't like what they say or disagree with it. Sometimes it's just a matter of time and more than one or two visits. I guess I'd be thrilled it was being called a real migraine, as opposed to psychogenic. If that doesn't come up in the first couple of visits, I find that to be a good sign....morgan

It's sad that we don't need the validation for ourselves, but to refute others opinions. I totally get that. I tested negative for sjogren's, but that is one thing the doctors all do agree on, and no one refutes. A certain percentage of people just test negative, so they go by my symptoms. That doesn't help with unresponsive and non supportive family and relatives though, does it? It sounds like you would have had to be a freak show for these guys to believe you. I am really sorry, and it would be so much easier if we had the proof. We all need one of those easy buttons from staples or something...

Beta blockers work best for me, and many, but you have to fine tune those too. Hopefully they will see what you are going through on the event monitor and come up with a treatment plan. I've always favored event monitors, because sure as shooting, we won't have any arrythmias for that and then they decide there's nothing wrong. Good luck sweetie! morgan

Always, sweet Melissa....mamacluck

Please keep in mind that this study was funded by a drug company pushing an anti anxiety drug, that has slowed down, because newer drugs are hitting the market. I would take any study funded by anyone who may have ulterior motives, with a grain of salt. morgan

Sorry Nina, I am awaiting genetic results too, and as things usually never go well with me, expect them to find nothing...I couldn't be that lucky. I know you will know how I mean that. Who wants it, but you've got something totally crappy, it would be nice to have the validation. My blood is in Germany, so I won't have to worry about dealing with a jerk. I would imagine you have a syndrome they haven't discovered yet. For Periodic Paralysis, there are over 30 mutations and they only look for the three most common in the U.S. Hence, my blood being in Germany. I was going to recommend the injections they do under flouroscopy, but am not sure if those are the injections you can't have. I have a friend here that had them and she says she had no idea how really bad she felt till she got them and felt so much better. I hope your gut doesn't suffer too much and you can get some answers. Oh what a world.....

Hope your shoulder is better! My power chair is right handed, so even if I hurt that part, I'd still have problems. I have had 2 concussions, broken all but one toe, fractured ribs, vertebrae in my back, pulled my neck muscles so many times, I sometimes wonder if they will ever stop hurting, broken an ankle, wrist, and my elbow. There have only been a few times I've gone back like a tree, I tend to crumple or "fold like an accordian" according to my hubs. What I always manage to do, for some reason, is whack one or both kness on something, hard. They usually smack a wall or the floor or something, but they always get whacked on something. Isn't this fun!

Holy Moley....I'm not sure what to say. It about sets off a surge in me just reading about what you plan on doing.... I have absolutely no recommendations for you, but hope it goes as well as you want. Stay propped and strapped upright onto something....morgan

I have to warn everyone that I'm a "spurter." I have never been a bleeder, but lately I have been bruising like crazy. I have never been a bruiser either. My last gastro was two weeks ago and I have a huge bruise from it still. I have no idea what my blood volume is. I do have days where I feel "light." But that's hard to explain. morgan

Apologize for the way that came out, maybe not the first specialty, but I will not back down from them being up there on the list. I have been blown off by just about every kind of specialist. So it's not just from personal experience, or because I feel I've been the only one burned by a neuro...or 30 years of working with every kind of doctor. My internist who, as a peer, should be treated with respect, has been blown off by several "specialists" Thank God, he has the self esteem to say, I don't know, but let's keep trying. The gist of my post was, sometimes we don't need every kind of specialist to deal with every different thing. Sometimes we can have better luck dealing with someone who knows a bit about a lot of things, than one who deals with one particular thing and can't cope with anything else added on to make it more complex. More importantly, it's more than pathetic that most of us have had to deal with any doctor of any kind, that places his/her fragile ego above the best interests of a patient. This is hard enough to deal with. That "first do no harm" seems to have been flushed down some toilet bowl somewhere from the time I became a nurse, to now. There are bad apples in every profession, but all of us sure seem to find the worst in the barrel quite a lot before we find a good one, if we ever do. It's a crap shoot, no matter the specialty I guess, but I still believe some are worse than others. morgan

Janet Evanovich, her Stephanie Plum books......One for the Money, Two for the Dough, etc. They can be a bit on the blue side and the language off color, but they are laugh out loud funny. They are not for everyone, but I eagerly await every new one and then read them in one day... DVD's: Love Actually The Cutting Edge (older) The Magic of Ordinary Days Emma Just a few.....

Nice to hear from you again Paige! I am happy you are doing so well and hope this continues for you. It's always encouraging to hear from people who have improved to the point you have! morgan

People swear by them or hate them. Just be very careful, I have seen 3 people die from "supplements" given by them. I am very traditional, but not opposed to anything that doesn't hurt you. I believe you have to be a zillionaire, however, as I had a friend spend 6000 dollars in 2 weeks to cure his metastatic cancer with "banana bags" (bags of saline filled with vitamins.) He was not cured. Please, just get credentials first. morgan

Geez, documentation of an allergic reaction and he fires you. Trust me, he's not worth the effort it takes to get upset. I live in a relatively small city too, and not one neuro will see me, although I have a documented neuro muscular disease. I really don't ever like to clump docs together, but it just seems to me, neuros are the very first specialty to blow you off, when you are complex. Maybe it's just me, but I worked with a nurse that worked in a neuro office and she agreed. I guess most people think only neuros can work with migraine sufferers, but my hubby and son both have horrid cluster migraines, and have never seen a neuro. They both are able to take prophylactic meds in very low doses, which help quite a bit. I have a zillion reactions like you (my doctor says he feels like he's playing russian roulette every time he tries a new drug with me) so they are fortunate I guess. But that is no reason to dump you, without even a recommendation for who you could see. If you have a primary, how does he feel about this? I find if I send info with my son, his primary is always willing to work with the info. Maybe you can try that. I am sorry this is happening, but it has become so commonplace, I begin to wonder. After the email I got from a soldier in the middle east this morning, discussing health care there for civilians, I feel gulity complaining, but really, there is no excuse for this kind of treatment. Good luck...morgan

I have a very difficult time staying on track in conversations. My hubs will be talking to me about something and I realize I have absolutely no idea what he has been saying, and must ask him to start over. He doesn't mind, usually laughs at me, but he can tell when I'm not all there. As far as suggestions, I just don't have any. it's much worse when I'm tired. morgan

I am totally the opposite. I am so cold intolerant, I can't even move when I am cold, I actually freeze up. Sorry, I just can't help you. I think I may be a rare bird, or heat intolerance is just talked about more. I don't think my thermostat works either way...morgan

I have days where lifting my arms seems like a gargantuan effort. I am starting to feel like my hubby has osmosed his narcolepsy to me. I wouldn't feel rested if I slept 23 hours a day. I think part of it, something we don't think of sometimes, is a lot of us have chronic pain and therefore our sleep is more interrupted than we think it is. Which, in turn, causes daytime fatigue we don't understand. If we don't wake all the way up, but never get the deepest sleep for any length of time, it will certainly affect our stamina. And tachy certainly doesn't help. Treadmill 24/7. I haven't found anything that helps except to take a short nap, if my body just refuses to let up. If I sleep very long, I feel awful, but a 20 minute nap seems to give me a bit of a second wind. Other than that, no good suggestions....morgan

Social Security told me that about 3-5% of people get approved on their first try. Don't give up, I know it can become a major struggle, but your perseverance will prevail. We got our son involved with a social worker who has been a God send. I know I didn't get mine for POTS, but other sundry things that affect my life. The wording is very important. Have you looked at the SSDI manual for illnesses under their guidelines for illnesses they do accept as almost automatic approval? You can find it on the SS site. POTS is not listed, but arrythmias that cause problems are. It can be a big struggle, but hang in there, I felt like giving up all the time and I got accepted on the first try! All the worries that go with it. But if you attempt to work now, when you can't and don't last, you have to start from scratch. That is discouraging.....good luck sweetie. morgan