Merrill

Jackie -- never fear -- you're NOT the only one! (Hooray!? ) When I was in my late and early teens I had the kind of panic problems that manifested in physical symptoms I've described on another recent post ... but yes, now that I'm older (42) and know of all the dangers in the world my panicky moments are usually triggered by thoughts of the unthinkable. With my husband traveling so much in the last year, these days they often revolve around something horrible happening to him--plane crash, car crash, random shooting--you name it, I fantasize about it. Triggers terrible tachycardia, feelings of fire shooting in my veins, and all the rest. It's easy to get caught up in the cycle of negative thinking about things we have no control over. But I've said this before elsewhere too...the frequency of these episodes has decreased since my diagnosis... and now, when they happen, I think, oh you darn pots--why you make me feel this way? STOP IT ... and I try to distract myself with something else. don't worry, m

Hi Deb -- I was just looking back over some of your posts to try to remember what you've been saying about your meds over the last couple months. It's so weird about those blood pressure fluctuations ... When it's high, does it remain high for several days in a row? Or does it sometimes go to normal? Is it the high blood pressure that tends to make you feel crappiest? Or is it the tachycardia? It certainly couldn't hurt to try to get in to see Dr. Low at Mayo...I know from your posts that you've already been through the wringer test-wise. Repeating the tilt also sounds like a good idea (tho it sounds too like you know how that one will turn out!) I wonder if you can get by without any medications at all--except for maybe the ones you take for allergies. You're really good about wearing the compression hose and staying hydrated and eating lots of salty stuff... with your drug sensitivities, maybe you'd feel better without? Not sure what else to say--except that I hope your good days outnumber your days of feeling punk... and that I'll be thinking of you as you search for more information and answers to your body's mysteries! Merrill

I had surgery last summer to remove a tumor inside an ovary--It probably wasn't considered major surgery, but I did have general anaesthesia. I was able to go home that night. I had this surgery pre-diagnosis. I remember the anaesthesiologist saying to me, "Does your heart always beat that fast?" I said yes, and then she made whatever adaptations I assume were necessary. Much depends, I think, about what kind of surgery you're going to have (as far as some of your other questions go)... Getting extra IV fluids would be a great thing for you, both before and after surgery. The amount of walking you're able to do, I think, depends more on the kind of surgery you're having than on the pots... I STRONGLY recommend that anyone facing surgery order the "Successful Surgery" pack from healthjourneys.com--listening to these CDs before, during, and after surgery saved me, I'm quite sure! Good luck--and let us know what's going on for you!

I just have to add that we don't ALL pass out... I think I'm posting this for any new people coming to the board who perhaps haven't been diagnosed yet and come here looking to see whether their symptoms match up. There are some commonalities in our experiences--and it's important to have a place where we can come to get those experiences validated! (If even one other person shares one of our goofy symptoms, it can make us feel so much better about it...)

Between the Vanderbilt questionnaire and the symptom list you can launch to from the potsplace home page (which includes a section for patient-reported symptoms along with research-proven symptoms), we'll have a REALLY good start. Doncha think? Things get a little complicated, I suppose, because it seems like some people suffer only from POTS, while others suffer from POTS and other diseases and/or syndromes not related to dysautonomia. I would imagine that sorting out which symptoms come from what condition would be difficult! Still and all, I plan to bring the symptoms list to my follow-up appt w/cardiologist in a couple weeks. I highlighted the document earlier today, marking the symptoms I experience, and I was shocked to see that I marked 30 out of the 59 listed. (I wouldn't have guessed it was that many!) Plus I added one more: dry mouth and dry eye, which, given other posts here and on ndrf, should be added to the second list of non-proven patient-reported symptoms. funny note: I saw my dentist today for a checkup (I also consider him a friend), and he commented on the whites of my eyes and said I looked really healthy. (It's true that the whites of my eyes are very white and clear, but...) I had to laugh--and I pulled out a copy of my marked-up symptom list and gave it to him. I thought of this post when I did so--if we're going to educate the medical community, dentists count! (Who knows, maybe someday he'll have an undiagnosed patient in his chair who will complain of some of these things...) Take good care, merrill

Your daughter is a sweetheart, Sue. I remember downloading that book -- and I printed sections of it at work -- but I felt too guilty to print the whole thing (using company time and resources etc) ... It's really long! I'm telling you this simply because there will definitely be some cost involved in the printing and copying... (Yes, envelopes and postage would cost a fortune!) Would be great to do double sided copying... It might be worth her calling NDRF and explaining what she wants to do. Maybe they'd be willing to donate some copies of the bound book? (Wishful thinking on my part, perhaps...) Good luck to you both -- sounds like a great idea.

So tonight I went to the world's easiest, slowest, loveliest, and most relaxing yoga class... and once again, I had the weirdest arm symptom I thought I'd share--and see if anyone else has this. When I raise my arm/s overhead--whether standing or laying flat on my back, I kind of lose feeling in my arms. Then (especially if I'm standing), when I lower my arm back down, I feel incredible heat (blood?) rush down my arm and into my fingers. It's not particularly pleasant... I kept finding myself wimping out--not holding the stretches or doing the moves. I know that's OK, and you gotta do what you gotta do--I mean hey, I made it to class didn't I? I know that's a very good sign... (I reminded the teacher today afterwards why I couldn't hold my arms up so he wouldn't wonder, but still it made me feel odd and sad.) Also, during the night while I'm sleeping my arms and/or hands go numb. This is all just funky pots stuff, right? Does anyone else have this? Thanks, m

Ditto what Nina said, Leah. I just read your post on the neurontin topic. Sorry to hear you've had such a rough spell lately--and especially sorry to hear about your dear kitty. It's just heartbreaking to lose a special pet... they mean so much and add so much joy and beauty to our lives. Wishing you peace and comfort (and speedy healing), merrill

Oh, m'gosh--that sounds so scary! I'm sorry that happened to you today! I didn't get diagnosed until last January but had symptoms since I was a teenager (I'm 42). And yes, I used to have panic attacks too--mostly characterized by extremely severe dry mouth, heart pounding/tachycardia, and sometimes uncontrollable shaking. I never had the choking/throat closing symptom you described, and I never took meds to control them... just dealt with it best I could. They're much fewer and farther between now, than goodness--and now that I know I have POTS, I think I'm more calm. (When I get symptomatic--or panicky--I just remind myself that it's the pots, not me, and then I do something that may make me feel better...lie down for a while, drink a bunch of water or gatorade, eat something...) Do you know what triggered it for you today? Were you thinking about something worrisome? Everything OK w/your daughter? Are you still breastfeeding or can you consider going back on the meds that worked for you before your pregnancy? I hope this was a one-time thing for you, Calypso... Take care, Merrill

I've been wearing the thigh high compression hose for several months, and I LOVE them... I wore knee highs before a different cardiologist told me those were a no-no and that I should wear thigh highs or to the waist instead. They don't strangle my legs, and they stay up and feel great. (I use Mediven brand, "Elegance" or something like that.) I can't bear to have anything tight around my waist, which is why I wear thigh high. (But I should add that my cardio strongly recommended to the waist...) I've been wearing 20-30 compression, and some days I wish I had 30-40, so I will soon buy a pair of those and try them out. Except for the extra labor everyone describes, I think I'll love those even more. I do not find the 20-30s difficult to put on; I put them on before I get out of bed in the morning (taking them off to shower a little while later) and I take them off for the night after I'm already sitting in bed. They make a huge amount of difference in my energy level and in my walking, standing, everything! I wore them non-stop on a hot-island-mini-vacation in April... and I've been wearing them in Chicago's heat. Yes, life is warmer with compression hose, but with a good attitude and adaptations in the other things you wear, you can still do great with them. (I wear really lightweight pants over the top and sleeveless blouses. An icy neck wrap for when it's super unbearable and would be too hot even without the hose...) I wrote this once in a different post, but it's worth repeating again... IF you have health insurance, chances are excellent that you're covered at 100% for something like 2 pairs a year. (I was told "one to wear, one to wash.") It's under the "durable medical goods" category. Ask your physician--any of them--to write you a prescription or to call one in to your medical supply store (I use Walgreens Home Health). Also, keep in mind that it's a good idea to buy your first pair at a medical supply store where you can get measured. (I guess you can measure yourself if you prefer to buy online...) Let us know what you think, Danelle, if you give 'em a go!

My very best wishes, Nina--to you and Stephanie and her baby. These are tender times... hang in there. m

No, the technician didn't say why... I don't even know if the doctor/s interpreting the results will even be able to say! (I'd love to know, though, and what--if anything--I could do differently! You're so out of control during sleep hours, you know?) I'm curious about a few things--like whether those apneas occurred during REM sleep, and what happened to my heart rate during REM. The technician said that my HR stayed pretty stable--I think under 100 bpm the whole time. (During my 24 holter, I woke up from a dream with heart racing and noted it in my journal. In fact, I got the notes from my doctor later and found that my hr went from 77 to 119 in that minute. I guess that didn't happen to my heart rate last night during sleep study, even tho I did wake from a dream--feeling full of anxiety and a little sick. That's when I got up to use the bathroom.) Anyway, m, good luck with your study next week. Getting hooked up to everything is pretty bizarre, and you'll never believe that you could possibly find a comfortable place to fall asleep. But be confident--you actually will! talk to you later, merrill

I posted several weeks ago that I was going to have a sleep study... and I had it last night. I'm sooooo glad it's over! I'll be happy to share the details if anyone wants to know what the process is like before you go through yours. The bottom line--I slept better than I thought I would, and I think I may even have slept better than at home. With all those wires, I couldn't toss and turn as I normally do, and of course there was no clock! (I think I'll get rid of my clock radio and have my husband tie me up at night. Maybe that will help! ) I am aware, however, that I fully awakened 5 times (and had to get out of bed once); the technician reported that I did have several apneas when I was lying on my left side, but then I turned myself over and they stopped. It takes 2 weeks to get the full report; they slow down the tapes and look for apneas and other sleep arousals that the technician wouldn't have seen just watching me in real time. If I learn anything that would be of interest, I'll post again. Take care, all. m

Calypso, I too was concerned about possible damage to the heart -- even the person administering the stress/echocardiogram the first time told me that over time, tachycardia can lead to an enlarged heart muscle (which apparently isn't a good thing). She was shocked at my high resting heart rate (that day it was 148; they brought it up to 193 on the treadmill and made me stop, saying they didn't want to see what would happen if it went over 200). But I know my heart's been going this fast for more than 28 years... and it's of normal size and function. But after I was diagnosed with POTS, and they saw on the holter monitor that my heart rate dropped down to well within the normal ranges during sleep, the docs set my mind at ease. They said they wanted to continue to monitor me for problems down the road--perhaps with annual echocardiograms to play it safe. (I was diagnosed 6 mos ago and have a follow-up appt in a couple weeks; I'll report back...) I just reread your post and saw that you were asking about the effects blood pressure swings have on the heart--not high heart rate. Oops. I don't have a clue what my pressure is; I never check it myself. I think the bottom line, tho, is that it's true what others have said--the heart is an extraordinarily tough cookie as muscles go... take care, merrill

Ernie, I think it's time to start experimenting with different brands of compression hose! My cardiologist (and several others since then) have told me to always wear thigh high or higher--not the knee high. (I had thought I was getting great benefit from the knee highs for a few months before that--and I had--but since I've been wearing thigh high, I do even better!) However, the long ones shouldn't be causing knee pain and skin irritation. I'm guessing you don't have the right size and brand on hand... There are a LOT of differences among brands, and people who wear these get attached to the brand that fits them best. I know you don't have time before Thursday to get this figured out--you already have a lot on your plate. But promise yourself a graduation present! Do a search on this site and on NDRF to see what others have to say... it may depend on height and weight and getting properly measured at a reputable medical supply store. So be good to yourself--and try not to worry too much about graduation day! Think positive! (Easier said than done, right? ) m

All these suggestions sound good. Two to three minutes standing before fainting isn't very much--but it's enough to walk across the stage to accept your diploma! If you know you cannot stand more than 3 minutes, period, no matter what you do (midodrine, compression hose, hydration, and all those other suggestions), then I would go ahead with the wheelchair UNTIL it's your moment to shine! Then get up and go in all your glory! Another option might to have along w/you one of those canes that has a pull-out seat in case you feel faint during the ceremony. By the way, are you OK if you're walking around? Because if so, maybe you'd be OK w'out that chair if you keep those legs moving...kind of march in place and/or do those muscle-tightening exercises, toe raises, etc. Good luck--and CONGRATULATIONS!

Kimberly. Which doctor did you see? (This chain has me confused!) Are you describing a visit with Dr. Robertson at Vanderbilt? This does sound confusing...

In response to someone's question on the ndrf site, Briarrose posted the following link to a Mayo Clinic article about a new drug being studied to benefit those people with orthostatic intolerance who suffer from dizziness when going from lying to standing. I thought it was interesting enough to post here... http://www.mayoclinic.org/news2003-rst/1954.html m

Briarrose--I'm so glad to hear that you don't have MS... but I sure can understand why you'd have more questions...even if you don't know what they are yet. Keep digging for the truth. It's there somewhere; clearly some doctors know more than others about dysautonomia and the body's healing systems. (And those that don't know probably know about something else instead... at least one would hope!) I too have been a lot more symptomatic lately--don't know if it's stress ... or if the longer days mean I'm trying to be more active and accomplish more than I can actually handle, or what! It's extremely annoying. Somehow, though, I take some measure of comfort in knowing it's the POTS when I'm feeling crappy. That may sound weird, but at least it's not a mystery any more (even tho I understand so little about what's going on and why and what the triggers are and so on). Take care, m

Congrats, Jessica. Making a decision can be freeing sometimes, huh? These are fragile times as you wait to hear which direction you'll move, but you sound like you have all the strength and flexibility you need to find your joy, wherever it may be. Take 'er easy, Merrill PS keep us posted on what happens next! I know you will...

What does it feel like? I can't even begin to imagine... I wish I could write with real feedback or advice, but I haven't a clue! Never been on the meds, and my heart's been racing for decades... Are you on a beta blocker? One that you could take a little bit less of for now? I wonder too what your doctor thought could be done for you at the ER. I hope it's not too scary and that you're not too fatigued. If it ain't one thing it's another, huh? Best to you, m

April, I realize that you didn't post your announcement because you had any particular questions or concerns about it... and I thought long and hard about whether to post another reply. Perhaps I'm overstepping my bounds--and forgive me if you think I am--but I want to share with you some information from the National Dysautonomia Research Foundation Web site (NDRF.org) -- written by Dr. Low, one of the leading clinical physicians for patients with POTS and other dysautonomias at the Mayo Clinic in Rochester MN. I'm pasting this info here because of something you wrote in your last post ... your cardiologist is concerned about taking care of you and not your developing fetus. (When I mentioned before about florinef and other drugs not being approved for use during pregnancy, I meant that it wasn't safe for the baby--not that it wouldn't be safe for YOU.) The 21st of June is three more weeks away, and your first trimester will be nearly over, yes? An awful lot of development is going on during this time... please read this from Dr. Low, and consider at least calling your OB to talk over the medications you're taking--if not changing your appointment and seeing her/him earlier. Your OB and cardiologist may need to work together--and with you, of course--to find appropriate therapies that will be OK for everyone (you AND your baby). Question: Has any research been done on the effects of pregnancy on women with Dysautonomia ( specifically POTS, syncope, and Pure Autonomic Failure) and the effects of the mother?s health and/or medication on the baby before and after birth? Answer: We have limited information on POTS and pregnancy. These patients being typically female and being fertile can become pregnant. Our patients have managed very well during their pregnancy and the delivery. They typically do very well during their pregnancy, feeling better than when they were not pregnant, especially during the first and second trimesters. They should not be on any medications during their pregnancy. The advice I give is as follows. They need to feel sufficiently well that they can manage without any medications. They need to be on a high salt, high fluid regimen. Their pregnancy should go well but should be managed as a high risk pregnancy by their obstetrician. During their delivery, their physicians need to ensure that they are volume expanded and like other high risk deliveries, they should not have to undergo prolonged labor. Finally, I tell them that they should be aware that they may feel worse in the puerperium (after their delivery) when their symptoms may return. Patients with MSA, PAF and the autonomic neuropathies are more often older patients who have had their families, so that the question of pregnancy usually does not arise. The same advice that I give to POTS about medications and delivery applies. Additionally, they should be aware of two additional facts. First, they have generalized autonomic failure, so that their BP control is poor and the stress of pregnancy is a major stress to the autonomic nervous system. Second, the drugs that are sometimes used during delivery may have unexpected effects. Specifically, they may have denervation supersensitivity to certain drugs, so that an excessive rise in BP can occur with certain drugs. Some hypotensive drugs can cause their BP to plummet. In general, we do not recommend pregnancy for patients with generalized autonomic failure. Dr Phillip A. Low , M.D.

Ditto! PS I hope your pots symptoms will get better with the increased blood volume. Salt and water will definitely help with that. Florinef hasn't been approved as a medication that's safe to take during pregnancy; I'm not sure about Zoloft and all the rest. But I'm sure your OB will talk to you about all this! (Don't forget to tell them about the meds you're on!) Good luck!

Steph, let us know the results of your test when you get them! I hope others on the forum will share their experiences with some of those meds--I've certainly heard others say that side effects developed even years after taking something. best, m

Briarrose--I've had some of these symptoms, but not all. I wonder how frequent these are for you? Constant? Only sometimes? I also wonder whether any of these could be the effects of some medications... (I wish I had time this morning to go back and read old posts to see what you might be taking... sorry!) My brother was diagnosed with MS a few months ago; the first optical symptom he had (a number of years ago, actually) was called optical neuritis (in one eye), and the symptom is not like any you describe. It seems like a curtain is being pulled over one eye, and you essentially lose vision in that eye almost entirely. This is the most common early (visual) symptom of MS. As for the other symptoms, these were not his experience either--and he has suffered, and suffered, from many. (The Avonex has finally gotten things under control and he feels much better, thank G-d.) Please see if you can get an MRI of the brain and spine, though. Everyone's different, obviously! It's important to get some answers--either to set your mind at ease (dysautonomia is WEIRD) or to begin treatment for a new condition that may have developed. (There are many good ones out there! I've seen that even MS can be successfully treated and managed--my sister-in-law has MS too, and she too is doing GREAT on Avonex.) Take good care, Merrill