Heiferly

Congrats on your date! I definitely wanted to chime in that it is completely normal to be single in your 30s. In my circle of friends married couples are few and far between. There are a few couples that have either chosen to stay together and not marry or are engaged but not yet married. But the overwhelming majority of people are singles who are just dating different people here and there. Our ages span late 20s to late 40s, and age doesn't seem to be a determiner as to who is single. I was recovering from a surgery when Alex first met me--hadn't even showered because I wasn't allowed to get the incision wet!! For Valentine's Day he bought me concert tickets, but we had to wait in a long line to get in and I just wasn't strong enough; he held me up by the waist through the line. I could go on, but the point is . . . illness does not automatically ruin a person's impression of you, and you can still date and even build a long-term relationship in the throes of it. Life is always going to have its ups and downs, and the right person will rise to the challenges with you.

Hm, maybe I will consider the medication then. I would love to be able to have less fatigue and a clearer head! I guess I'll see how much headway I make with the endocrinologist/nephrologist first, then maybe tackle that. I don't want to do two things at once and not be able to tell what side effects are coming from what. But I definitely am ready to make some changes because I'm frustrated with how much my quality of life has gone downhill and how little symptom relief I'm getting from my current combo of meds. I'm also relieved to hear that other OI people are having these memory/attention issues as well. Sometimes its a relief to know you're "normal" in a way, LOL.

Jennifer, I know you're right. I have no intention of ever seeing that neuro again, let alone trying to get him to see that my illness is not psychological. It's just satisfying to daydream about putting him in his place after how rude he was to me. I'm sensitive, and he really got under my skin. Maybe I shouldn't need external validation like that, but it was really good to see a highly respected expert say in no uncertain terms that it was NOT depression, emotional problems, or a personality issue. The thing that confuses me about finding a new neuro is what to do about my medical records. My medical records are all one big shabang so far as I know, because all of my docs and specialists are through one hospital system that centralizes their records via computer. They all access them in one place, and they're all aggregated together in one file. So in order to get my history to a new neuro, he will necessarily get everything the "bad neuro" has written about me in with the rest of my records. Won't this bias the new neuro to think the same things? How do I keep that from happening? I know I'm going to have to go outside of my hospital system this time, as otherwise I'll just end up with one of "bad neuro's" colleagues, but aren't I still going to have problems if whatever new doctor I get reads all these notes saying that I'm just a depressed person who complains of too many symptoms? Do I just take things like the neurocog results with me and hope the new neuro believes me that the last one was wrong?

I don't know how much this can help, but there is makeup that is designed to conceal severe redness. I have very bad scarring from two surgeries that is on my upper chest. For my sister's wedding, the scars were going to show in the wedding picture with the strapless dress. The more recent scar (keloid), especially, is very bright red which is what makes it so noticeable. We went to the makeup counter at a department store and got a special concealer designed just for scars. This stuff will cover ANYTHING. (The saleswoman said people use it to cover tattoos as well.) It is flesh colored and did completely neutralize the redness from my scars; I was very happy with it. The brand is Dermablend. Perhaps you could mix it with your foundation to help give good coverage of the redness so you wouldn't have to worry about people noticing the flushing? At least until you can find a medical solution. I hope you find something that helps! Sorry that doc was such a jerk. That's the worst when doctors treat you so poorly!

So glad to hear you are back home and recovering! Please do take care of yourself. Gentle hugs, Heather.

Do you have much recovering still to go at home? Either way, I'm glad you're home and doing better. Hospitals are the pits. Gentle hugs, Heather.

I got the results back from my testing. I am posting the summary paragraph, as the report was two pages long. If anyone wants to know more, I can answer your questions or send you the longer part over PM. I added emphasis to the parts I think are most significant. "These results indicate that she performed within normal limits in most areas of higher cognitive function. There was a consistent pattern of relative deficit on measures of verbal learning and memory, and auditory working memory. The pattern of deficit is consistent with moderate dysfunction, maximal in the temporal region of the left cerebral hemisphere. This is consistent with her reported history and symptoms. The pattern of deficit cannot be attributed to emotional or personality factors. Her memory difficulties are, to some extent, secondary to problems with attention and concentration. Medications that could address her problems with attention and fatigue could be considered. She has a relatively specific deficit in memory, and other areas of higher cognitive function appear intact. These results represent baseline levels, and it may be worthwhile to consider reexamining her in approximately two years in order to monitor her progress. This reexamination could occur sooner if there are important changes in her condition." 1. I'm not clear if the fact that he localized it to a specific region of my brain (i.e. temporal region of the left cerebral hemisphere) and said it was consistent with my history and symptoms means that there is damage in this part of my brain. (Earlier in the report it goes over my history of past concussions, including the one in September that my doctor specifically mentioned in his referral for this testing.) I will ask my doctor for clarification when we go over this at my appointment this week. Hopefully now that we know more about my memory problems there's some next step we can take to do something about it. 2. When my neurologist and I got into it at my last appointment, he told me that my memory problems just HAD to be "depression" because "people as young as you just don't get memory loss unless they have a brain tumor and I would KNOW if you had a brain tumor." (Did I forget to mention he has x-ray vision, because I haven't had a CT or MRI in over 2 years?) Well when he found out my other doc had already ordered the memory testing, he was so smug saying we'd just wait and see what it had to say. (He was SURE it would say I was either depressed or just plain crazy.) I didn't send the report to him because I am planning on finding a new doc, but OH it WOULD be lovely to see his face if I made him read the part that said "There was no evidence of significant depression. ... The pattern of deficit cannot be attributed to emotional or personality factors." What's that there? Is that humble pie? Would you like a nice big slice, Mr. High and Mighty Neurologist? 3. I see that he suggests possibly taking meds for attention/fatigue. My knee-jerk reaction is Bad Idea. Of course this guy is far from a POTS doctor so I'll have to run it by my docs and they may very well say that these kind of meds are not appropriate for me. But in the event that they do offer them, has anyone else tried anything like this? Any opinions or positive/negative experiences to share?

I don't think it was a mistake in the blood draws because they weren't drawn from my IV (they were separate pokes each time--gee thanks!), and there were 4-5 separate draws for these tests over the course of 5 days. Only one of the tests was only run once (TSH). I didn't have any infection when I was in the hospital--I was in there for chest pain because of my tachycardia and they kept me because my POTS was haywire and they were running tests on me. Considering how bad my daily level of symptoms are and how unresolved they are even with all the medicine I'm taking, I just think that no stone should be left unturned when things show up abnormal. It would be different if a person were feeling healthy and their blood levels were "off." I know doctors are used to just brushing that off if it's not too far away from the normal range. But if you're having all kinds of symptoms, why ignore something that could resolve at least part of the problem? And certainly it's quite possible that the minor changes seen in my spine were just a fluke. But I would think the right thing to do would be to say, "hey, we noticed this and maybe we need to check on it again in X amount of time to make sure it's not a real problem." My concern is that I don't think anyone but the doc who interpreted the x-ray DID notice it. I don't think any of MY doctors actually read any of these reports. Just got off the phone with SO's mom and feeling very ... not understood ... need to go distract myself with some happy music and get my mind on other things for a while.

Ernie, Yes, I saw the INcompetent endocrinologist while I was there in the hospital, and that went nowhere fast. I'm scheduled to see a new endocrinologist/nephrologist on January 6th. I am wishin' and hopin' and prayin' that this will be a good doctor. I'm taking all of this with me, and all the other wacky labs I have since I first got sick with POTS, since I don't trust any of my records to make it there intact on their own (nor do I trust anyone to read them unless I'm sitting there watching and pointing out the numbers myself).

ARrrgghhhghhhghh!!! So I went to the hospital today to get a copy of my records from my last inpatient hospitalization. I looked over all my blood labs. It wasn't just low potassium and low cortisol. Here is what I found: low potassium high chloride (is that just from salt loading, as in NaCl? but it didn't flag sodium as high??) high glucose (doesn't actually look awful, but lab flagged as high) high osmolality high TSH low RBC low Hgb low Hct low RBC Distrobution low Grans, Elec. high Lymphs, Elec. high Monocytes, Elec. AND chest x-ray 10/9/08 "comparison being made to an exam dated 3/3/08 . . . Bony structures demonstrate minor degenerative changes of the thoracic spine." Okay, I know it said "minor" degenerative changes, but that is over only SEVEN months!!! Shouldn't some doc have seen that and been at least slightly concerned?! On top of which, I have no clue what half those blood levels up there mean (I guess I have my work cut out for me in terms of internet searches now), but I have to think at least a few of them might be important?? Or else why do they bother testing them in the first place? Am I only the only one who ever bothers to look at my test results? I don't know why this surprises me. It totally shouldn't by now. I've been through this before. I'm just frustrated and it's all the more frustrating for the fact that the doctor's assessment that my chest pain was probably "anxiety" over the tachycardia. If you acknowledge the tachycardia, why can't that itself be causing me the pain?? Why do you have to say that I'm anxious and that's my problem?! Arrgghh!! And perhaps something in all that screwy labwork was contributing to my pain; wouldn't that have been worth exploring rather than making assumptions about my mental state?

I have frequent need to urinate as well. On top of that, sometimes when I go to get up to get to the bathroom, I get hit by a wave of dizziness/nausea or I start to gray out and have to sit back down. This has caused me to have accidents sometimes either because the muscles let go while I'm graying out, or because I couldn't get to the bathroom in time because I kept having to sit back down. Loading up on so much extra fluids like the docs want me to doesn't help. (Despite the salt and fludrocortisone, I'm not retaining it--it always shows a fluid deficit when my ins/outs are measured.) Urinary frequency is a listed symptom of dysautonomia. I don't know what can be done to help it though?

Yes, the Wiggles are huge in the States. I've been on disability (and thus away from "my" kids) for over 2 years now and I *still* get "hot potato ... cold spaghetti" stuck in my head sometimes. But if you're not around young kids, I doubt you'd ever encounter them. Stuff like The Wiggles, Boobah, The Backyardigans, LazyTown . . . it's a strange parallel world that adults never glimpse if they don't have or interact with kids. And probably with good reason, LOL.

It looks like you've gotten some pretty great advice so far. Fludrocortisone is in a different class of steroids than the ones we traditionally think of (like prednisone) which have many side effects. It has a fairly limited scope of action on the body, but there are certainly other treatments which can be tried first. I would caution you to talk to your daughter's doctor before trying the elevation of the head of the bed, as some articles say this is only appropriate in certain cases of dysautonomia and can be detrimental in others. Before trying medication, increasing fluids and salt sounds like a good place to start. Someone else suggested asking about whether compression hose come in children's sizes. Some people find compression garments to be of great help, if your daughter doesn't find them uncomfortable. (Perhaps even just wearing thick tights during the winter would help?) As a teacher, my best advice to you would be to work on teaching her to recognize when symptoms are coming on and to immediately sit down. Stairs are most certainly a danger; I live in a three-story house and have taken a few spills down ours. I go up them on hands and knees and scoot down on my bottom if I'm dizzy, though of course this is only a solution for in my home. It's certainly not my proudest moment at 29 years old to be scooting around like that, but tumbles down the stairs leave you really banged up. Do be extra vigilant when it comes to bath time. The warm water/steam from baths/showers dilates blood vessels and increases the likelihood of a faint.

I too read an article that said that raising the head of the bed is not advisable for all of us, that that advice was outdated before they understood as much about how much variance there is between us as they do today. I think that applies to hyperadrenergenic POTS but not the rest of us POTSys . . . or was it the other way around? Does one of the veterans around here know which it is? At any rate, perhaps ask your doctor if that applies to your form of dys?? Personally, I tried sleeping on an angle for a while (head tilted up), just for daytime naps--due to all the hubbub about not lying down on Midodrine--and found it to be miserable. I'm a stomach sleeper too and I think that may have been why, but I guess that's just a theory. It just made me toss and turn. Now I lie flat and am much more content.

Add me to the chorus of people taking Midodrine overnight. It doesn't give me high BP when supine at all either, just keeps me from getting icky low BP symptoms that ruin my ability to sleep well. Has really been one of my biggest helps, switching to round-the-clock dosing so it never wears off!

Congratulations!!

I hope today went well and that you get some good rest tonight! Hang in there, and hopefully they'll have you headed home soon!!! HUGS!

So hard to say what causes the sudden random flares, isn't it? I suppose it could be the benadryl . . . have you taken it in the past without problems? I flared up really badly last night . . HR over 100 sitting and pulse pressure dipping at random to severe lows, and my brain fogged up big time. I'm definitely sympathizing with you!! I hope you're feeling better soon!!!

I'm really surprised to hear they didn't do more from the ED for having a sustained low HR like that. Did they take an EKG in the ED or run any other tests? They didn't tell you to discontinue Metoprolol for the time being, or at least check with the prescribing physician regarding doing so?? When I was initially prescribed Metoprolol I was told specifically by the hospital AND by the pharmacy not to take it if my HR was below 60. I was also given restriction as to what my BP had to be above to take it. Can you call the on-call or answering service for your doc and ask about the metoprolol? Or at least call your pharmacist. I'm pretty sure it's dangerous to continue taking doses of it when you're already running a low heart rate. Of course you shouldn't suddenly stop taking it without asking a doctor first, but I definitely think this warrants bugging the on-call doc on a Sunday, or going through your doc's answering service to page him/her! Especially since you tried going through the ED and they didn't help you. Your heart rate may be going lower when you sleep, without you realizing it; I'm not trying to scare you, just saying that you don't necessarily want to put this off even until tomorrow.

Tessa, YOU ROCK!! After reading through the first link you put up, and following up with a little more reading on wikipedia, I think I finally found an explanation for my mismatched test results!! Thank you thank you thank you for posting that link!!!!!!!!! FYI, in case anyone else is floundering like I've been with mis-matched test results that didn't seem to "fit" any of the adrenal disease definitions but still indicated a problem, at the bottom of wikipedia's article on ACTH stimulation test is a chart which shows what constellations of test results mean what. It might not solve every case, but it was an AHA for me. I never even knew about secondary or tertiary explanations of adrenal problems before! http://en.wikipedia.org/wiki/ACTH_stimulation_test Again, Tessa, THANKS!!!

While some doctors look at us as though our test results and symptoms can only mean one thing: alien from the planet mars, we have so much in common when we network with others with dysautonomia.

I was an undergraduate at Johns Hopkins University when I was treated at Johns Hopkins for a "mystery problem" with my liver. I thought it was a wonderful hospital and they were very thorough in helping me with my problem, but I can't say anything specific about the departments you would potentially be dealing with for this. It's a tough decision and I hope whatever you decide that they get it figured out soon you can start feeling better!!

Kind thoughts and hugs!!!

Keeping you in my thoughts!! Big hugs!!

How do you get them custom made? Does that make a huge difference in comfort level? Are you finding the higher compression to be much better?