Tried cortef

[morgan617]

Well I tried the cortef. I was supposed to take 40 mgs in am and 20 in pm. That made me a little nervous, so I took 20 mg. OMG I did not like it. It didn't help that I had to get a tooth extracted I suppose, from fainting and cracking my head and my tooth.

I do not believe it causes me to have my episodes, but it certainly seems to exacerbate them. I took 10 the next day and 5 yesterday. I felt crummy all three days, so I guess that rules out adrenal insufficiency, even though my doctor did say none of the tests were normal. Man I was so sure I was on a right path finally. I could try it again, but it is soooo hard to take something that makes you feel worse when you already believe you can't feel any any worse!!

I couldn't even sit up without my heart taking off on a wild goose chase and not letting up. And I couldn't lie still. I had the heebie bejeebers all day long.

Dan , my doctor said, if it didn't help he was going to put me in the hospital, and have me checked out by everyone. But since I couldn't even take one full dose, I feel really really stupid. But then tonight, my hubs took me for a 15 minute drive and we had to come home so I could lie down. So this is no life either. ARGH

I know the hospital will be fruitless, but there is absolutely no quality to my life at this point now. We both know, no one in this area knows POTS, and it's just so frustrating. I am so tired. What would you guys do, knowing hospital will probably be useless, but not even being able to sit up, let alone stand or walk anymore? Thanks, tootiredtobealivemorgan

[Ernie]

Hi,

I would give the hospital a try.

[Radha]

sorry to hear you are feeling so bad, i take cortef too, but much lower dose, 5mg in a.m. and 5mg in afternoon, maybe you could try a lower dose? hope you get some relief soon,

radha

[calypso]

Morgan,

I know you hate the hospital and don't have much faith, but I don't know that you have much choice here. I am worried that if you do nothing, you may be more peaceful, but you would miss the chance at a potential treatment or diagnosis. How long would you have to stay? I would make sure there is a specific plan in place, and that you have all of the testing scheduled before you are admitted. It's easy to get admitted and then be just sitting in there, waiting for the wheels to get moving.

I so wish you could be figured out. I wish so many of us with odd problems could be figured out -- but I especially wish this for you, considering how long you've been dealing with it and how many horrible experiences you've had to endure with various incompetent or rude medical staff.

Amy

[Aprilmarie52]

I am sorry that you are feeling so bad lately. I hope that the hospital stay will give you some answers.

[DancingLight]

mydearweeniemommorgan,

the thought of going to the hospital makes me cringe too. but i am not sure there is another choice here? if they SEE how sick you are maybe they WILL pay attention.

i haven't been online hardly at all to respond to posts, and haven't gotten to reply to many of your posts. but i have read as much as i can. and all i know is that EVERY SINGLE DAY i pray that you will have logged on to POTSplace and written something, anything so that i know that you are still out there somewhere. i worry sooooo much about you and so do so many others on this board.

i have come to care very deeply for you over the past couple of years (NDRF to POTSplace) and i'm not ready to give up on you! i am just not convinced that you have gotten the attention you deserve/need to possibly help you achieve some better quality of life.

YOU ARE WORTH FIGHTING FOR...just like you fight for your family.

if you do decide to go to the hospital, can you have dave post an update if he can? or jake? or maybe you've taught chloe to type? now that she's the star of your avatar?

thinking about you more than you know and wishing i had better words of wisdom...

much love from pa all the way out to coveredwagonland, emily

[steph37822]

oops

[morgan617]

stephmydocisgorgeousandsingle and everyone else, thanks for the input.

Some of you haven't been here long enough, but after my ablation, which made me so much worse, I applied everywhere you can think of back east. Mayo, NIH, Cleaveland, Vandy and got rejected at all of them. My wonderful doctor called and left his work, home, cell, hospital, every number you can think of, and not one of the doctors called him back. Trust me, we have tried everything.

I still have the letter from Vandy and Mayo, saying I could not be helped by them. I believe this is because right after the ablation, my heart couldn't race, so it just looked like I had htn. I actually wrote back to Mayo, asking them how they could refuse to help someone, and got a letter back saying they were sorry if I was offended, but too bad.

So I have not only been rejected by doctors here, who know nothing, I have been rejected by every specialist too. So now you know why it's just easier to give up. Now I feel way too sick to travel, even if they did take me. I have episodes every single day and they are just wearing me out so much. I am tired of fighting this. They do not have all the stuff here. Actually I don't believe there's anywhere really except back east to go for ans problems. Maybe I'm wrong, but I believe briarrose would agree with this. I think she travels to see Dr. Grubb. From further west than me. I can not justify putting us so deeply in debt anymore. Even if I felt like traveling, the waiting time to get in is so long, it wouldn't be worth it anyway.

And that is my conundrum. Pretty sure it won't help here (although he can talk me into anything) and no one else wants me. Couldn't afford it if they did. Man I am just so tired. haditmorgan

[JaneEyre9]

Hey Morgansbeenthroughtheringerandback,

You may have already heard of this place (or been there), but i did some searching on the internet and found The Heart Institute in Washington. It looks like they offer some of the specialized tests that Steph mentioned. Here is the web address:

http://www.hcnw.org

At least this group would be in tune with your heart function. They list syncope on the website as something they treat. Anyway, even if this isn't an option, i hope that you are able to get some help from that wonderful doctor of yours.

Kristen

[morgan617]

ohmisseyremygoodness, I am very familiar with that place And it's the best we have to offer. But thank you for looking. uhuhnotmenottheremorgan

[steph37822]

oops

[briarrose]

Morgan

I feel your pain and I'm glad that I read your post, I agree with you 100 percent. I haven't been very good the last 3 months about keeping up with the board. I totally understand what you?re going through. I know you've looked everywhere out here, been there, done that!

Steph and yes the U of W is regarded as one of the best medical universities in the country, top 20 for almost every specialty of medicine. They also (with Bill Gates help) have the Genome project. http://www.genome.washington.edu/UWGC/index.cfm

So of all places you think you would be able to get help there. Before I traveled to see Dr. Grubb I searched almost all of the NW looking for care. I kind of stopped short on California but did make calls down there too. Each hospital I called in Washington, Oregon & California I talked to the cardiology department, Neurology dept. and Infectious disease dept, just to cover my bases and I didn't get anywhere. I know that there is a Dr. at Oregon Health Science University that someone else sees and she's been pretty happy with her care but I've called that dept and been blown off too.

I live a little farther West in Portland, Oregon but Dr. Grubb has been worth the travel and the money. I wouldn't be where I am today without his help. He was an investment and a life saver. I know that without his advice and treatment I would be too sick to work and I would have had to let my ex-husband have the kids because I would be too ill to care for them. Before I traveled to see Dr. Grubb I was ready to give up and life was kind of minute to minute, symptom to symptom.

Morgan try to hang in there and continue turning the stones, something has got to turn up. And if all else fails I would be happy to have you in my suitcase But I won't be going back until at least next year sometime as I just saw Dr. Grubb and I have many issues that I have to take care of before we can attempt to tackle my hypotension issues again.

In all seriousness if you want to send me a private email of what your symptoms are and what you need done I would be happy to get back on the phone and retry the medical system again here in the NW for you.

Just a side note but I was looking for a new primary care doctor here and I thought what the heck and called my health plan referral line and told them what kind of doctor I needed & what my diagnosis is; 2 weeks went by and I thought they gave up on me but they finally called back to say they had been hunting that whole time and really couldn't help me because no one knew what Dysautonomia was They did give me a couple of names to try of internal medicine doctors.

I also know that Roselover has a very good primary care doc, I'm familiar with many doctors? there because they are affiliated with the hospital I work at and they are always well receptive of our phone calls from the ER. So I might just switch to her doc.

Take care Morgan and let me know if I can be of any help to you.

Steph

[morgan617]

mydearyoucanthavehimhesminesteph, Well, yes.....He did a very bad thing and then asked me to discharge myself from his practice. Wasn't that sweet of him?

As far as NIH, there are no programs for me right now. I checked. They are out of money for this type of thing I guess.

When I did the prelim stuff for the other places they had me do orthostatics, and my pulse did not race at that time, as it has started to do again, therefore, it did not look like autonomic issues, therefore I did not meet their qualifications. Also sweet.

During my ablation, my rate was at 320 at times. He found a spot and ablated 27 times. He said the worst that would happen is I would feel the same. unh wrong. He didn't bother to ask any experts in this area (the area of ans problems) and my doctor and hubs trusted him. I did not want the procedure, but did it for my family and my doc. It would have taken one 10 minute call for him to know it was very very bad. But he needed a beemer I guess. I got disability. Not a trade off I would highly recommend to people.

This is one of the reasons my doctor won't let go of me. He blames himself. Man cute and a concsious..... (drool off the tongue) He has said he will go to his grave regretting decisions made for me and not by me. He is very guilt ridden over me, which is sad, as it wasn't his job to see about this, it was the infamous, go away little girl, cardiologist's job.

My hubs feels the same way. It is very difficult to see, because they were REALLY trying to help me and the jerk just needed 25,000 from me.

My circumstances are such, that I will not do any more financially to my family. They are not the healthiest chubs on the block either. It is just very difficult to see people you love pull away out of fear, or guilt or whatever it is they are going through. If Dan pushes me, I will go, but I will certainly not hold my breath. And then maybe we can all agree everything that we were able to do was done and no one has to feel bad any more.

I always feel funny writing this stuff, don't know why. But that's the pooper scooper on it. Cardiologist messed up, says good bye, nephrologist says, to hard for me or any one, bye bye, er docs say cuckoo cuckoo bye bye. PCP says, OMG I've killed you and now I have to scramble and do everything I can to save you... readers digest. Oh nih, vandy,mayo,cleaveland say no way jose, pulse isn't fast enough.

FYI, my pulse seems to have found another accessory pathway, but now I don't tolerate anything. Fast slow irregular nada, high bp low bp nada. My butt is shaped like my big squooshy couch. I only weigh about 100 pounds, but it's all there. bigbuttincrushwithherdocmorgan

[steph37822]

oops

[MightyMouse]

Morgan, honestly, I don't know what I'd do... I hate the hospital too as, for me, they always seem to muck something up with me.

Whatever you choose to do, I hope you start to do better soon. Nina

[morgan617]

I think you hit on it Steph.

What my body did use to be pretty predictible. Sorry about spelling. I mean, I knew what to expect when it was bad, but now, it just whacks out and I never know what's going to happen.

I'd never fainted before, now I do. My arrythmias were not real prolonged, now they are. And sometimes it's really bad and sometimes just bad, I have no clue what triggers it, and no idea what's going to happen when it does trigger. I think that's what's throwing me into a downward tailspin. And the fact that my body used to tolerate these weird things and now suddenly, it doesn't. It is such a horrible feeling, to try and tell your hubby that something is wrong, but you can't get the words out. gross!

I will think on whether anything has ever helped, although I haven't ever really been on anything. I have never taken very many drugs. hmmm I'll get back to you. I think the surgeon general idea is a good one.

Briar, thanks, it does really stink out here. One of the hospitals here is listed in the top 100 of the united states and they give me all the psych diagnoses! Go figure. About the time I considered Dr. Grubb, he got really sick. I can't bring myself to add to his already to much life. But I appreciate everyone's support and understanding. No judging, what a refreshing concept. morganistired

[michiganjan]

Morgan, I wish I could help you. There was a time about 17 years ago that I was really bad with symptoms--my quality of life was poor and at the same time, my doctor decided he didn't know what else to do with me. I don't think the term POTS had even been invented yet.

Anyway, I was left to deal by myself. Any help was going to have to come from me. Well, I did have a supportive husband and kids, but I did not have this forum then, nor did I even know anyone else had the same problems I had.

What pulled me through and eventually did help was coming to some sort of acceptance of being ill--kind of like a long sigh and then an oh, well, and telling myself something like. "Well you feel pretty crappy, don't you? And you can't do anything about it either. So just don't worry about it and do the best you can and be satisfied with that."

I adopted this quote from Mother Goose

"For every ailment under the sun

There is a remedy or there is none

If there be one, try to find it

If there be none, never mind it"

I did try to find a remedy and had been successful, so I did my best to never mind it and strange as it may seem it helped a lot.

Now I am not saying that it is a case of mind over matter--that if you decide you are not sick than you won't be. I know better than that. I am saying that if you can't do something about it at the time, then do the best you can to live with it.

For the most part, I gave up worrying about it, because that did not help me at all. I put all my energy into just doing what I could.

This may sound simplistic but for me it was powerful. I learned that I was stronger than I thought I was.

I was not messed up by an ablation, but my body was pretty messed up in significant ways. If your body is finding new pathways to make up for what was done, that is a statement of your resiliancy. There is strength in that resiliancy. Hold on to that and it will see you through.

I am sending you prayers and love.

[Patricia]

Morgan,

I am so sorry to hear how ill you are as I have been there frequently and still am one of the more "afflicted" on this forum. I have never had the opportunity to be hospitalized more than one day for research testing, so if I had the opportunity I would take it. I do wonder if the primary physician heading your hospitalization could find out if he could consult via the phone with one of the autonomic specialists? If it is explained you are too frail to even travel, could one of them offer suggestions to your primary while you are hospitalized or how to interpret the tests? As busy as Dr. Grubb is, maybe another one of his colleagues would be willing as they seem to be a compassionate group.

Don't give up HOPE.....

Patricia (sending my prayers to you)