kmichaelson

I'm similar in that I feel very guilty about my husband having to do so much more now that I'm sick. He's wonderful and doesn't complain, but obviously it adds to his stress. I think that's a big fear of mine if we were to have kids that I wouldn't be able to do as much as I'd like and it would just add even more to his stress.

Oh my gosh, that's exactly what I get! It's so frustrating because they hit when I just want to sleep, but I feel like I just drank 100 cups of coffee. Why can't I get a little of that adrenaline in the morning instead?!

Hi Lynne, my doctor told me it would take 2-3 weeks for the medication to start making a difference for me, and I think I had been on it for about 6 weeks by the time I told him it wasn't helping. At that point, he told me to stop the florinef--he didn't wean me off of it or anything--and begin the midodrine. (I think I was taking .1 mg of it.) I remember I did feel extra bad for a bit after quitting the florinef and probably before midodrine started kicking in, but I don't know if it was due to meds or just a bad phase for me. That's so annoying your doctor won't respond to your calls! Do you have a follow up appt with him or her soon? I think for me the most frustrating thing about trying new meds is that I would get my hopes up, wait 4-8 weeks to see if something worked or not, then check in with whatever dr. I was seeing at the time, be told to try it some more or get a new med, and just repeat the same pointless process! I felt like I ate up years with this wait and see approach, but I guess we can only try so many things at a time. Anyway, I don't at all mean to be dispensing medical advice of course! I just wanted to let you know my experience of it not working for me in case that's what you're experiencing too.

^^^That's a great description! I've been having this exact feeling for a few years, and I've been wondering recently if it's an adrenaline surge. For me it feels like an electric shock (or surge I guess!) going up my head and down my arms. It's usually very brief for me--more like seconds that minutes and I get them pretty frequently. Again, I'm not sure if what I'm experiencing are adrenaline surges, but they feel very similar to that "near collision" feeling you described so well, Godsgal! I hope that's what they are, because it would be nice to finally know what's happening!

I'd like to add my 'thanks' as well! I was just thinking that this forum has an incredible collection of intelligent, well-informed, compassionate, and caring people on it! Since I've only been diagnosed for a few months now, this has been almost literally a life saver for me in terms of trying to understand my disease and realizing that all the weird physical phenomenon I've had all my life are not "normal" but actually part of this disease! Most importantly, though, just the support and interaction with the people on this forum has been amazing for me. I have never been so socially isolated on a day-to-day basis as I am right now due to my inability to leave the house most days, and as everyone here knows, the majority of people we encounter have a very difficult time understanding this disease and the extent to which it affects us. I've had some very low points (mentally and emotionally) in the past months, and just knowing that there are people here who understand and care has gotten me through much of this. So I know I'm a little late for Thanksgiving (in the U.S.), but I'm most definitely thankful for this forum and all of you on it this year!

Hi Igail, I took Florinef for about 6 weeks recently and wondered the same thing! I would feel relatively normal for a few hours in the evening, but it didn't do anything to help me in the morning or early afternoons. When my doctor originally prescribed Florinef, he told me that withing a month I should be feeling 'back to normal.' I think I kept trying to convince myself it was helping, but on my follow-up appointment my doctor was good about making me tell him honestly if I thought it was helping or not, so I said it wasn't and he recently put me on Midodrine instead. This seems to be making a dent in my symptoms so far, which is very exciting because nothing has helped me at all for over two years! Sorry if I'm getting off your original topic a bit, but I just wanted to let you know my experience since I was in a similar situation to you. I just don't think there's a one-size-fits-all solution for everyone with POTS, and Florinef wasn't the one for me. Good luck finding the right thing to help you feel better!

I don't have any advice, because I'm in a similar boat, but I just wanted to thank you for asking this question! I also have endo and POTS, but I'm 34 and know that I don't have forever to decide what I want to do so I've been asking myself this exact question for a long time now! Thanks to everyone for their wonderful insight, and, Frugalmama, thank you for giving me your perspective as a child of a mother who had health concerns. I think I worry sometimes that I won't be the 'ideal' mother in my condition right now, but you're so right that just having a loving, caring parent is by far the most important thing. Not every mother can do everything, and the most important things a mother does are not the physical ones.

My nose gets bright red when it's cold actually! I think that with Raynauds sometimes it can affect your nose the same way it affects hands and feet. My mom has the red cold nose too--we always joke about inventing a nose warmer!

Hi, anaphylaxing, I'm just taking midodrine right now. I was on florinef as well, but I think that would be out of my system by the time this was happening (almost 2 weeks off of it). I've just been really sensitive to temperature lately. Like my hands are typically ice cold, but when I wear gloves, they often start burning, get super red and swell up! I probably should not take such warm showers, but I'm usually so cold that it feels good...at least, until it starts to feel bad! I've seen people advise that if you're feeling bad in the shower to spray cool water on your legs--I've noticed that DOES help me somewhat. (I think it constricts the blood vessels in my legs a bit and forces blood to other areas?) Good luck dealing with this--I'm sorry you're having it, but I'm glad you posted so I know it's not just me.

Thanks again, everyone, for the advice! I appreciate the input. I have noticed that when my hands are warmer, I get a more normal reading, so I bet it's a combination of cold hands/constricted blood flow in my hands and the device just not being top of the line. It's kind of a relief to know that for once the device is malfunctioning instead of me!

Ugh, I just noticed this today when I was showering. My veins looked really dark and like my skin was see-through. I think for me it was due to the heat in the shower making my blood vessels dialate. I also get really splotchy from the hot water. It seems like my blood is either pooling or entirely absent in different parts of my body depending on the time of day, etc! I've also been getting extremely dizzy, short of breath and feeling close to passing out as I shower, so it might be time to start bringing a stool in with me... or I'll show go on a shower strike, ha ha.

Hello everyone, I have been soooo frustrated lately by my inability to get to sleep at a reasonable hour despite how tired I am! I've recently read about delayed sleep onset, which is where you get tired at a normal bedtime (around 10 p.m.) but can't sleep until well after midnight, and that describes me exactly! Once I fall asleep (usually between 1 a.m. and 4 a.m.) I'm dead to the world until almost noon unless I have to get up before then. (Of course as everyone on this board knows, that's much easier said than done for us). It's just frustrating that I feel like total crap in the morning and afternoon when everyone else in the world is functioning, then I get my "energy" around midnight when everyone else is asleep! Maybe I should make friends with some people in India or China so that I have someone to hang out with, LOL. Like last night I was tired around 8-9 p.m. and almost wanted to go to bed that early, but then I went to bed at 10:30 and laid there with my heart and mind racing for more than four hours (though I got up on and off). Just to clarify, I have this problem no matter what time I wake up, not just when I sleep in late. Obviously that contributes to my difficulty working when I'm tired and dizzy all the time anyway and then can't even get to sleep. I searched the forum and found some really old threads that mentioned people with sleep difficulty taking melatonin and that helping. Has anyone here tried that or found other solutions to a problem like this? Also, have you done actual sleep studies or can a PCP just write a script for this? Sorry for the long post, but I know so many of us here have enormous difficulty in the morning, so I wondered if a lot of us also share the trouble of delayed sleep onset.

Hi Lissy, Sorry you're having such a difficult time! I recently had a lot of stress due to the threat of losing my job due to my illness, and I had similar symptoms to what you described: shakiness, extreme tachy, dizziness, weakness, etc. Just like you said, I too have a very hard time coping with any sort of stress these days! From things I've read from other posters (and you may already know this!), our sympathetic nervous systems, which control fight/flight in times of stress, are a big part of our dysfunction, so in my case I feel like whenever I encounter a small amount of stress, my sympathetic nervous system fires up waaaayyy too much and makes me physically feel like I'm more stressed that I should be. I don't know enough to say anything about emotional stress causing dysautonomia, but although mine seems to have started with multiple viral infections, I think that THOSE were triggered or at least aggravated by stress! I had moved 3 times within a year, started a new job several times, had major issues with my in-laws' behavior, etc. and I think that the stress just finally wore down my immune system and set this whole thing off. So while stress may not have been the direct trigger for dysautonomia, I'm sure it played a role in my getting to this point. Lots of studies show a link between immune function and stress. I was actually a clinical psych major for a time during college and interned on a study that showed the effects of stress on caregivers' immune systems--here's a link to an article on the study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC39758/pdf/pnas01514-0427.pdf Unfortunately I don't ever feel comfortable sharing with doctors any information about stress because for the first two years of my illness (before I had a dx), doctors were all too happy to try to blame anxiety, depression, or any other mental issues since they couldn't find a diagnosis themselves. Obviously there's a mind-body link, and I acknowledge that, but I feel that a lot of doctors would want to push my physical illness into the mental illness category rather than address it; however, I don't think it's so much an either/or question (physical or mental) as it is an interaction of the two.

Oh my gosh, thank you for posting that! My sister has CFS and had shingles, but it all started for her with trigeminal neuralgia. I have had EBV and CMV to kick this all off, but I also get the 'electric shocks' that you mention. Wow, it's so interesting to see something I kind of suspected confirmed (or at least a connection shown) by research!

I've had nausea after general anesthesia, but it hasn't been especially extreme. I'm able to get really bland foods and liquids down--kind of like when I have the flu. Mostly I'm just extra dizzy and prone to passing out for a day or two after, but I just know to take it easy. Good luck with it in January and I'm glad you don't have to deal with it over Christmas!

RubyTuesday, I see that you mentioned sinus issues as a common thread. I've had severe sinus problems for years and years, have had two sinus surgeries to no avail, and have not been able to treat my sinus problems in any way, so that's really interesting to hear. I also have patellar tracking disorder (kneecap slides around too much), tendonitis in my elbow, and stiff painful hands (maybe early arthritis since I'm only 34). Could anyone tell me if I wanted to see if I do have EDS based on this, what kind of doctor would I see? Do others who have this condition think it's worth checking out based on what I've said, or would my symptoms be more obvious if I had this?

Thanks for all of these good tips! Getting around in the morning is SOOOO difficult for me and it's been getting worse, so it's absolutely wonderful to see some ideas for coping with it. Fiona-Jane, I love the tip to start getting ready while I'm sitting in bed! That's such a great idea--thanks!

I actually just had an endoscopy and colonoscopy last week and had general anesthesia for it. Also, I had a laparoscopy this past spring with general anesthesia. I was really worried about it as well, especially on the endo/colonscopy since I couldn't eat the day before, but things didn't go too terribly. First, I asked my cardiologist who treats my POTS about it, and he said that I should ask the people doing my procedure to pre-load me with extra fluids before the surgery, so I think that probably helped. I made sure the people assisting with the surgery knew about POTS too. To some of them it was news, so I'm glad I mentioned it! Afterwards, it did take me a long time to come out of the anesthesia. I don't recall the whole thing that well, so I don't remember anything about my blood pressure--it's normally pretty low I know. However, I wasn't able to stand after the surgery without getting really dizzy and starting to pass out, so the nurses gave me lots of fluids and eventually took me to the car in a wheelchair and were really good about helping me into the car, etc. I've heard lots of people say they go out to lunch after a procedure like this, and there's no way I EVER would have been able to do that. I pretty much slept the entire day afterwards, and still felt pretty out of it until just recently. Essentially, it was a lot harder for me that it would be for most people, but the doctors and nurses made sure everyone knew what was going on so it worked out the best it could. I'm sorry you had such a terrible experience before and that you have to have another surgery! Do you have a good doctor who treats your POTS? Maybe he or she could advise you as to how you could best handle this? Good luck to you!

Can anyone explain to me what bed tilting does for us? My POTS makes it extremely difficult to get out of bed and get going in the mornings, so I wonder if bed tilting would help with this. Although, for me, I feel almost like I don't have enough blood reaching my head when I sleep, so maybe this wouldn't be right for me. Also, would just using multiple pillows do the same thing? I just wonder because I don't know if my husband would love having the bed tilted.

Hello all, I just ordered intramax which is supposed to be a really good liquid vitamin. My sister, who has CFS and neuro issues, tried Intramax a few months ago and has had a big improvement since then, so I thought I would try it as well. Unfortunately it's really expensive--$80 for a bottle! Of course if it makes a difference, it's totally worth it. I'm wondering if anyone else has used Intramax and if you think it's worth it, or if you have used other supplements like this that you think are good? By the way, here's a link to the Intramax site if anyone is interested in more details about it: http://www.intramax.org/

Hi Naomi, I haven't had this problem much myself, but my sister has had swollen lymph nodes in her neck a lot over the past year. She and I both have been fighting recurrent Epstein Barr, and I think that it's due to that. Have you ever been tested for EBV or CMV? I don't know if that's what's affecting you, but I know that these diseases are called 'glandular fever' so maybe it's a possibility? Good luck in figuring it out, and by the way, I love your ice skating Hello Kitty--that's so cute!

Hi Jan, I was really dreading it as well, but it's not as bad as I thought it might be. Definitely the prep is the worst part. The night before I had to drink 2 liters of what's called MoviPrep, which tastes like really salty gatorade. It's hard to get it all down because it's pretty gross, but I drank most of it before I felt too nauseous to finish. Just don't plan on being anywhere far from a toilet at all once you start drinking this! Basically you'll just be spending a lot of time in the bathroom, and it's gross, but it wasn't painful or anything. I didn't get cramps from it. Compared to the prep, the actual procedure is absolutely nothing. I was given general anesthesia, so I was totally unaware of everything and I didn't have any pain afterwards. I have a bad time with anesthesia though, so I made sure they pre-loaded me with extra fluids before the procedure. My cardiologist said I should ask them to do this and that he would talk to them if necessary, but they didn't question it. I had this done at 9:30 or so this morning and I'm still really tired and dizzy, but that's actually how I feel most days, so I'm not sure how much is anesthesia and how much is me, but I've been sleeping a lot and don't feel bad in general--just like I don't want to do anything or move around. Also, I originally had this scheduled for a Wednesday, but I changed it to a Friday just to give myself a little extra time to recover since I know it takes me awhile to feel better after anesthesia. Also, I'm sure you know that we can't eat anything the day before the procedure, but you can have chicken broth, jello, and about any liquid that isn't milky or cloudy, so going the whole day without food wasn't as bad as I thought it might be. I just had lots of small "meals" throughout the day, and then by the evening when it's time to drink the prep fluids, you'll be so full you won't feel hungry. I hope this all makes sense! I'm still feeling a little woozy so I could be typing nonsense. But I just wanted to let you know that I was worried as well, but it wasn't nearly as bad as I feared it might be, and it's good to have it over with to set your mind at ease! PM me if you think of any other questions & good luck!

Hi Alicia, Thanks for checking on me--you're so sweet! Everything went fine today thankfully! I had to have an endoscopy (tube down my throat) and a colonoscopy because I've been having a lot of digestive issues, but the doctor said everything looked fine. I guess they took a biopsy too, but I think that's just to confirm if I have IBS or not, which it seems like I do. The "colon prep" certainly isn't fun and anesthesia is always rough for me to come out of, but I'm not doing too bad considering it all! Thanks again for checking on me! I hope you're having a good day & doing well.

Yes, I get that way as well, especially when I have diarrhea (sorry to be gross). I actually have a colonoscopy tomorrow and have to do my stupid bowel cleanse tonight, so I'm feeling pretty faint right now.

I know! I love Libby's idea! That would be so satisfying to only pay doctors what they're worth. That would be great if they were motivated by quality rather than quantity.I nominate Libby to reform health care!