morgan617

just an udate. we got back from portland. jake got a great doctor...finally. he didn't want to say anything negative about the docs here, but made it clear that his care has been spotty, at best. he drew a gallon of blood and will be in contact with jake's pcp here, who is also great, so all was positive. except, i'm not certain i mentioned i broke my collarbone, a couple of ribs and cracked my shoulder blade, falling off a stupid chair. i can't rmember the last time i've had such pain. it was right side of course, and i am completely right handed. good grief. but the visit at ohsu was really great, we just have to wait for test results. morgantheklutz

There are so many new people here, but for those of you who have been here awhile and know about Jake, he has been accepted at Oregon Health and Sciences for his hyperparathyroidism! I am trying not to get my hopes up too much, but as some of you know, we have had just as big a struggle getting help for him as for me, and they believe him! He has developed a fast pulse and lots of other POTS symptoms, but we KNOW he has a tumor on one or more parathyroids, which the doctors here think they should just "watch and wait and see how big they get" They argue whether he has malabsorption (he doesn't, his GI has tested) that leaves a tumor or tumors, for which his endo says so what. You have so many symptoms of this disorder that they are blaming on depression, even though his labs are off, he has osteopenia, tanchycardia, the testosterone levels of a 70 year old man (he is 26!) his hair is falling out, he is always light headed, because his pulse races at the slightest exertion and his BP dumps and just about everyone can relate to that one. Fatigue and brain fog. He may still have POTS, he definitely has arthritis and it won't help that, but it would help his calcium absorption. His level is 9 and should be greater than 30. It could help the tachycardia, BP, gut, testosterone levels, fatigue, weakness, brain fog, and the list goes on. Please keep your fingers and toes crossed that maybe, just maybe, while I continue to be completely blown off, that he won't....Good thoughts and prayers are happily accepted. morgan

I'd get a lawyer and file a grievance and probably try the other job, although you may end up running into the same problems. In my state, they can only say whether they would hire you again or not, not why you left, if you put them on your resume, but if you don't and file a grievance, it will show the new place you lied...a rock and a hard place. Did you say you had already been offered the job? I was off the board for awhile, but know you had the ablation done. You didn't have syncope before that did you? It seemed like you didn't, as I recall. I didn't till my ablation either, and then discovered I was having huge drops in my rate, which my doctor thinks is damage from the ablation. Have you had that checked out? I got a pacer, as you may recall and haven't passed out since. Sorry you are going through all this..I am assumig this is not the same hospital you were at when you joined, since you've only been there 4 months. What a bummer. I hope you can get things worked out! morgan

WEll, we've had about 3 hot days, so no problem there. Between 3 and 7 every day is just awful for me, I have no idea why. I can't stay awake, I feel like total crappola during those hours and then I get this second wind about 7-10 pm. Go figure....

My first one. I paralyze. I had a bad experience with paramedics when I was having really bad arrythmias, like who hasn't, but was not too trusting of them after that (der)...but I did it in my husband's doctor's office during his visit. No clue what was going on.. The paramedic was very very sweet, and I had never met him (just the cretin before him) this was about something totally different than the arrythmias, but I remember looking at him and telling him how much I hated him because he was so mean to me. I remember he smiled because he realized I had no clue who he was, I was confused. But then I paralyzed and he was wonderful, so I had to send him cookies because I felt so bad. The stupidest thing ever said is a tie between my dad and a doctor. My dad said, don't think about and it will stop. The doctor said, why is your potassium 2.3...like I would know and fix it magically on my own. I also face planted in front of my doctor. I was going back to the room, he was standing there looking at a chart and glanced up at me. I remember turning my head and looking at him...and kersplat, absolutely no ability to even try and save myself. Then, while lying across my hubby's lap, I told my doctor he was the most beautiful man I had ever seen and I was in love with him.. Good grief, it's a good thing Dave knows how much I love him...so that was something stupid I said.

I personally believe that altough it is crucial to have good friends and family to talk to, the problem of being too close and therefore being able to be objective and non biased is much more difficult. While I am verylucky to have a supportive family, my therapist is actually the one that helps me untangle the strings of my discordant life without any judgement or emotional baggage to interfere. My son was going through a really awful time several years ago and I realized I loved him too much to help him. He needed someone that could sit back and look at the circumstances in a way I never could. He helped my son more than I ever could have, because I just wanted to "fix" everything and couldn't, and sometimes that just makes things worse. I believe therapists are invaluable to people struggling, but I will reiterate what everyone else has said. You sometimes have to shop a bit to find the one you click with. I have been going to mine off and on for 15 or so years and she has saved me more times than I care to count. Even my hubs has called her on occasion, when he has realized she is better for me than he is. And for reasons that are just plain old annoying, when ever a doctor questions me, I can truthfully say, I have a great therapist and she says that is NOT the problem, so stick it up your pipe and smoke it. It's a bit difficult for a doctor to tell you you just need "help" when you are already getting it.....best of luck whatever you decide sweetie! morgan

Atenolol is the only drug I can tolerate and I've been on it a long time now. Everything is trial and error. if the atenolol works for you, I wouldn't want to mess with it, but if you want to see if something else could work better, all you can do is try it and see. What works for one can feel lethal to another around this popsicle stand...morgan

Your heart seldom stays the same at all times, unless you are completely pace maker dependent. The same is true of BP's. I virtually never have the exact same BP at all times, or even minutes apart, even when I was a nurse, no one was ever the same every time you took it. it would be within a range, but not the same. Sinus arrythmia occurs with breathing. When you breathe in, it speeds up, when you breathe out, it slows down. This is completely normal. An arrythmia occurs when the beat itself is abnormal...irregular means the spaces between the beats are abnormal in some way, other than speeding up but at an even pace or slowing down at an even pace. There are so many kinds of arrythmias, it's just hard to know. If you were on a monitor, they would have had a chance to see why it was jumping around. You may have been having early types of beats, which make the monitor misread what it is seeing. Typically as long as the beats are sinus in origin (they initiate the way they are supposed to and look like they are supposed to, no one is going to actually say you are having arrythmias. She would have said you were having premature beats, which are an arrythmia. Sinus arrythmia is actually pretty easy to pick up, because even though it is speeding up and slowing down, the beats are very regular, whether faster or slower. 88 to over 100 is a pretty big jump for sinus arrythmia, it's typically only a few beats faster or slower. My pulse tended to go over 100 for no reason all the the time before I started atenolol and it's still considered normal by my doctors, regardless of how I feel with it. Arrythmias are considered abnormal beats that do not resemble your normal rythym, and are disruptive to your natural rythym. So it's hard to answer your question and it wasn't even directed at me, so sorry. maybe cardiatech can explain it better. I shouldn't do this when I'm foggy. I can't even spell today and I was a cardiac nurse for years and years. morgan

Thank you Rachel. it is essential that, although we keep open minds, that we don't blindly fall for things without this type of investigation. I have no real problems with natural alternatives, but I have seen several people die from abuse of these. I've also seen people die from FDA approved drugs, but they are at least regulated to some degree. I would feel much better about things that have some regulatory rules in place. I have to say I don't like the first sentence...non existent illnesses...there's nothing non existent about our problems, that being said, I would be skeptical also. morgan

I am so sorry Ernie! Just when you think it can't get worse...it does. It is so odd that the symptomatic one lasted longer than the non symptomatic one. Did they have an explanation for that? It's so hard to see your family suffer. Sometimes harder than yourself. Your family is in my thoughts and prayers...morgan

Well, you could use the good news right now, congrats Pat! morgan

My prayers are with you sweetie! morgan

Thanks all, I absolutely love the cartoon, it is so appropriate. I know others lives are much worse, but sometimes it's hard to remember that. I can't believe all the new folks, I didn't hink I'd been gone that long! I'm hangin in there and hope most of it was taken tongue in cheek as it was intended...I need a potassium... morgan

HI Michelle, I am in vestibular rehab right now for bppv, and she asked if I had had angiography to see if I had vertebral flow problems too. However, she didn't know what you do for it. I am going to follow up with my ent and see what he says. I have thought for awhile that something's getting "pinched" when I turn certain ways. I have unequivical meneires bilaterally, but I still think there's something more going on. Who did the MRI and what did they say about it? I would guess this would be more of a neuro problem, but if your artery just ends, as opposed to getting impinged, the treatments would have to be very different. By the way, I have been on this site forever, but have been off due to vertigo stuff, and don't know virtually anyone here now, so welcome. And I'm sorry no one answered your post, I can't help you, but I certainly get what you are saying. My guess would be neuro, or to ask the doc that ordered the MRI who could best help you. Good luck! morgan

Nina, Jake's also has dexamethasone in it, which is as bitter as you know what...but he'll do anything to help with the pain of those little buggers. As tiny as they can be, they always feel like they are the size of a quarter....good luck with getting rid of them. For those of you that think lysine will help, it's for cold sores, not cankers. Many people confuse the two and they are totally different entities...morgan

Randi, please try hkpp.org or PPA.org. They have tons of info for Periodic Paralysis. Good luck...morgan

Hi there, once i couldn't work, i couldn't work anymore, but voc rehab is probably your best option. If you are trying to get disability though, you can't work during the process. Good luck! morgan

Good job ernie, this is a hard thing to do, but i surely admire you for all you, not only for your family, but for all of us! You are always a honey! morgan

Man you have a bad day and the world's going to end, my whole life has been a train wreck, so I wonder what THAT means. Welcome all newbies from an old gramma on this site! Where's my CHLOE????? I need my avatar back and have no idea how to get it there...will need the aid of my hubby. She left me a year ago this month, so it stands to reason she's off, but I don't like it.... Well I've had a trying time, lost the house sort of, we do have offers, but the bank is trying to get us down, got a cold sore the size of New York that made me sick as a dog (I will always hate the guy who lended me his chapstick in the dark when I was 24 and when we got in the light I saw it on his lip, I never even kissed the bugger and he still gave me one off his chapstick, how pathetic is that) Thankfully I only get them, knock on wood, about every five to ten years, but they save up and make me absolutely miserable. My computer has taken forever to get up and running, my inner ear has become the monster in the closet, for real, and now I am in "vestibular rehab" where they make you do everything that induces vertigo and vomiting and you pay them to do it! I only pray it will help. I got started on a new drug for my PP, so they are messing with all my drugs, how fun. I think I know what a migraine feels like now. And Jake informed me he stopped his meds a couple of months ago....So if he wants to be a 3 year old at 26, I will be doling out those meds, by gosh and by golly. So, I have to get up to snuff here, when my eyes focus and my head's not in a bucket. I've been having a lot more arrythmias and I'm still waiting for summer and it's the middle of july. OY. Whereis that global warming, because it's sure not where I live! I'm sitting here in thermals for gosh sake... So, I am attempting to get back on board, but may be spotty for awhile. hello to all, young and old, new and oldie moldie golden gassers...morgan (am I the only one who remembers that phrase?)

Hi Randi, I have periodic paralysis, although I haven't heard of the "hyperglycemic" type. I hope this is okay, but if your neuro thinks this is her problem there is a site, well two, where you can go and see if she fits. (It sounds like hypokalemic to me, where people can be affected for very long periods of time) the sites are, well, I won't put them on here because I'm not sure about the rules at the moment, brain fog, but Please feel free to pm me if you'd like to discuss this further. It's a very rare condition and you are lucky the neuro even had heard of it! Gotta give kudos for that! good luck..morgan

Corina, I'm so glad you are doing so well! It's about dang time....hope it keeps up and you improve more each day! You waited a long time for this and have had way too many trials. Good luck sweetie! morgan

Sorry late to chime in. Ask your doctor for Reynold's solution..it's a swish and spit. it doesn't cure them, but it sure makes them feel better! Jake will get 10-15 at a time in his mouth and he uses it like crazy when he does. And you are correct, it's an autoimmune thing. Biotene is the best toothpaste, as it helps with moisture and doesn't have the abrasive qualities of the others. It's a bit more expensive, but jake will tell you it's more than worth the cost. Hope you feel better soon sweetie. morgan

So sorry about the news Pat! You will definitely be in my thoughts and prayers! hugs sweetie...morgan

I had a tubal when I was 30 and at that time there was no endometriosis at all. But from my first period to my last, they were just awful. I was also a heavy bleeder, but it wasn't the bleeding that killed me, it was the cramping, diarrhea and all that stuff. I was absolutely miserable every single period. I finally had a hyst at 31. They wanted to take my ovaries "if neccessary" I said no way. When they got in there I was full of endometriosis (this was a year later!) but I had a lot of other stuff going on that was causing all the pain. I continued to have cystic ovaries and hormone stuff, and still do darn it, but I never regretted having the hyst for one second. People who are completely against having surgery to relieve suffering may or may not have the suffering, but I can't believe anyone who really wants to die once a month would ever miss that pain. I'll take anything I can to help, since there is so little they can do about most of my stuff. However, this is definitely a personal decision. I think if ablation is done correctly, it is very helpful, but if your problem is not bledding, but pain, I'm not sure ablation is your solution anyway. it is typically for very heavy bleeding. Whatever you decide, good luck sweetie...morgan p.s. my sister is one year younger than me (I'm 53) and the doctor's been trying to get her to have a hyst for more years than I can remember. Some people just can't do it and that's okay....

Hi James, I have never been a person plagued by headaches...until the last month or two. Mine are not like yours, it's more like just too much pressure all over. I told my hubby, that old saying where everytime you learn something, you get a new wrinkle in your brain, so it would stand to reason it would get smaller? Well, I'm losing things at an alarming rate, so my brain is getting unwrinkled and too big for my head.... I know it's not funny, but I believe the majority of people on here have problems with headaches of one sort or another. The general rule of thumb is, if it's something new and doesn't go away, get it checked out. Hope you feel better soon. p.s. my son has headaches every single day and his doctor told him to stop treating them as they might be rebound headaches from too much treating. It seems to have helped a bit. I have no idea if you take anything for them however. morgan