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About morgan617

  • Birthday December 29

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    Spokane, WA

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  1. Thank you. It is good to be back. I have missed this site....
  2. Once in awhile you are allowed to have enough. But then you get back on that horse. I feel like the trying is sometimes so much harder than the illness. But we can't let the crappo doctors or the illness win. So back up on that horse we go....
  3. Hello, I am morgan. I was here several years ago and then left when I got the correct diagnosis, which wasn't hyperandrenergic POTS. However, it was also the wrong diagnosis! I took humongous doses of potassium to keep it at just normal range and suffered from malignant hypertension. I did not have syncope because my BP shot up instead of dropping, hence the hyperandrenergic stuff. I had cardiac ablation to slow my heart rate down (big mistake) and then had to get a pace maker. I was on 4-5 BP meds at a time. So what they were giving me for my "real" diagnosis wasn't working real well. You can't get around with BP's of 250/130 for 18 years and not run into trouble. 2 Years ago this month, I had a heart attack. I had been a nurse for 30 years before I had to quit. I worked on a cardiac floor for 13 years. I KNEW I was having a heart attack. But I was so burned out on bad doctors, I laid in my bed and said, well whatever. (PLEASE don't EVER be that stupid!) 5 days later I gave up and went to the ER. I had damaged my heart and my kidneys. I got a stent placed for 100% blockage. 5 months later, I got a second one near the first one. A year and a half ago, I asked my new pcp if I could see a nephrologist because of kidney stones (had to have surgery to laser one that was stuck) and I have a great pcp. I live in a little town of 26,000 or so. I had no hope what so ever. The only thing was, I now officially have heart disease and kidney disease. I was with the kidney guy less than 5 minutes and he said, there's something wrong with your adrenal glands. I said no, I asked my doctor THIRTEEN years ago to test and he said it was too rare. He said, let me a test. I said ok. In one day I had a REAL diagnosis. Primary adrenal hyperplasia. I take one pill a day that's about 100 years old, and I am off all the BP meds, and the potassium. I still don't fit the spectrum of POTS, however, I am back because my son does. SO I am hoping to be here to talk about what's going on with him. I don't know any of the new treatments for this or what they have found in the last ten years or so. I do want to say this, however. I am 61 years old. I have been fighting all this since my 20's. I have given up and stopped looking for answers more times than I can count. But I have always gotten back up and said...they will not win..I will look till I get the answers. And sometimes they come in the strangest places. Some days I am sad and bitter that I had to get SO unhealthy for people to actually believe I was sick. But most days I just feel validated. I think it's ok to sit back sometimes and take a breather from the suffering, not caused by the illness, but by the people you have to deal with. But never give up! Very few people would choose to feel this way for attention or psychiatric reasons. Trust me when I tell you I've been diagnosed with every one of them over the course of the last couple of decades. When they actually got it right, I sat down and wrote a letter to the doctors who had tried to crush me. Ahhhh, that felt good. I will start posting on my son later...but there may be a few people here who still remember me and for those that have no idea who I am, now you do....sweet Corina!
  4. The great slippery slope has been dealing with me. In survival mode I guess. LOL. My BP used to be so high, now it's everywhere. My potassium won't stay out of the toilet and I'm in a chair all the time now. You all know I have other things besides POTS, just hard to weed it all out, because everything seems to weave together in some form or another. But it's nice to be among friends. My doc says I am dribbling away from him..lol. That about says it all. In more ways than one. I have managed to keep my two dogs pretty healthy, which I have not had lots of luck with in the past, we have been fighting for ssdi for Jake (son) for about 4 years now...sigh. Many know how that goes too. We actually found a little house with NO steps, oh how nice. So do what I can. I still try to take care of our troops as much as possible, but not nearly as much as I have. Life dribbles on....lol. I seem to be having a lot of POTS sx, which haven't been at the forefront for awhile, so time to come back on and see what's new and improved...Nice to see familiar folks! morgan
  5. Hi all, been gone awhile, so had trouble getting back on. Just a quick hallo to those that may remember me and a hallo to the new members, hoping anyone gone, is gone because they are so much better! My typing has gotten even worse, so sorry about that. Fumble fingers malloy.... Anyway, good to be back on....
  6. Sorry, but we are in our third year of appeals for Jake, our son. Everyone has to see a mental health person. Then if you appeal, they send that one time visit to a doctor that's not in your state and they interpret what all your problems are from that one 40 minute visit. Regardless of whether you've been in therapy for 100 years. They said Jake's friends didn't notice he had anxiety and depression, well yes they did, but no one realized he was apparently supposed to take them to his sessions to verify it! It's called wearing you down so you will give up. They always get all your records from the doctors. I make sure my primary has EVERYTHING, then I am certain they get everything. All the paperwork is absolutely normal. You do need to contact your doctors and make sure they are sending them. I got mine on my first try, but I had to jump through hoops, the same ones, we've been fighting for Jake for awhile. They actually say he is disabled, but "too young." Well, he's been sick since he was 11, so der.....A disability is a disibility at any age. There is a lot of stuff archived here about it if you go back, you can get some tips. There used to be a site, but I'm not sure if it's still there, I never used it. Don't give up and don't lose your patience yet, there is still a ways to go! Just do what they ask no matter how stupid it seems, and so much of it is stupid....morgan
  7. I have been on valium forever, the generic. Diazepam. I started it for an autoimmune inner ear disorder and found out it helps with my surges too. I've been on it at least 15 years. I took about 8 mg total a day till my surgery in July, now that is too much for some reason, too sedating. I dropped to 4 mg a day and did fine with that. If I need to go back up, I will. I am glad to see the positive input on here about benzos. I agree, they are like any other med. If they help, that's great, if they don't, toss em in the big pile of other things that don't work. We are all too different to suggest that something shouldn't be taken because of a "bad rap." And no one should be made to feel bad if it didn't work for them, or if it does and they take it regularly. That would be like saying, oh betas work for you, well you'd better stop it then! My doc says there are so few things that do help me he is more than happy to be my "dealer" We always laugh about that, since I take an infant dose... I'm glad you found something that helps, those surges blow....morgan
  8. I'm not sure why he is stopping it totally. I have cut back on my own. he is ok with stuff like that, as long as I let him know. But he wamts me off it altogether. I'm guessing he wants to see if my rate will pick back up...it used to be about 120-130 at rest all the time. Or if my BP will improve. I stopped it, figuring the dose was so low by now, no big deal...wrongo! I had an absolutely horrible night last night. Surges, but the weird thing is, my pulse did go up but only to 80. But I had so many arrythmias, I just couldn't handle it. When my pacer is working, it kind of over rides them so I don't feel so cruddy. So I'm really not sure. I am keeping a log. I have gone from 25 three times a day to 12.5 three times and am now doing 2 a day. Will wean over a week or so. Still dumping the bp though. The highest it has gone is 140/80. It used to go to 230/120. This is completely opposite to what my body used to do. Anyway, it's either 1) to stop bp drops or 2) to see if my pulse speeds back up and indicates whether my S-A node is working or not. What a pain. morgan
  9. Hi all, well the oldies will know my story and don't want to bore anyone. Reader's digest...I have been hyperandrenergic for a long time. very high bp's and heart rates. They go up, not drop. I am on atenolol and have a pacer. I developed tachy-brady. Now I am totally pacer dependent apparently, my heart makes no effort what so ever to speed up. And my BP is dropping into the toilet once I am up. Fairly high while down. My pulse will not go up to compensate, so I am pretty darn sure I would be having a lot of syncope without my pacer. I actually can't remember the last time I wasn't paced. It used to always overide the atenolol, but not any more. A complete turn about from a few years ago. sigh...... He is thinking I am maybe MSA or everything is just going...... but on the bright side, at least i don't have gall bladder pain Sometimes ya just gotta laugh or you'd cry a river.....................btw, why does my avatar disappear everytime I leave for a bit? Where's my Chloe?
  10. Hi hyracinth, I am from Washington State too, and so sorry, but good darn luck! I have been fighting this machine for several years now. If you are younger and able, I highly recommend you go out of state, to one of places listed. I have terrible luck with them too, but others have done quite well. I happen to have a really good primary who has stuck by me for 26 years and believes me and takes very good care of me, but he is brilliant and admits I am the patient he will never get over. I don't know what part of washington you live in, but I know the universities aren't great. We took our son to OHSU and had a pretty good visit there, and it's only 5 hours or so from Spokane. Out of state, but If you archive you will see I have done about all there is to do here. I'm a bit flumoxed about the tilt. You might get a second opinion from an EPS, but few of them know more than the basics about OI around here and will defer you back to your primary after they do the test. Sorry to be a downer here, but I've been trying for 8 years to get adequate help from people besides my pcp and HE Has tried to get help for me. This is just not a pregressive state for these kinds of illnesses. You can pm me if you want.....morgan
  11. No clue, but I was put on tri's at age 29 for fibro and he had to stop them within 6 weeks, because the tachy I got was so bad. I've been sensitive that way ever since, but wasn't really on a lot of meds before that, so not sure if it triggered it, or was just the first one to do it. morgan
  12. Nina, Jake takes 2 nexium, but our gastro has him take 40mg pepcid at bedtime, he says the acid you release at night is different than what is released during the day and the H2 inhibitors are better for that type. he does do better when he follows that regime and the 40 is prescription strength, so it helps pay for it. You might try that. I have had an absolutely horrible time since my chole. Everyone said the diarrhea would be the pits, but I swannee, my gut has stopped moving all together and I have to take 1-3 colace a day to get any movement. I have always had a weird gut, but this is the total pits. I have a gastro and dilation scheduled in October, but not sure I'm going to make it till then. Anyway, you might try that. He always knows when he has missed one. good luck sweetie...morgan
  13. I had one with the contrast and one without. The stuff can mimic the pain for a short period but it goes away fast. It never took that long for me though. I think the longest one was about a half hour. It's an easy test. Good luck. I had mine out in July, it was a piece of cake surgery wise....
  14. Hi Alicia, I took it for a long time when I first got diagnosed with meneire's, but it's an anticholinergic, so caused all kinds of problems for me too. I take very low dose valium now and don't have nearly the problems. Like I'm on 1/2 mg right now, which is pretty much an infant dose. But it has worked better than anything else I have ever tried. Knock on wood... morgan
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