Stace915

I took a prescription strength supplement of vitamin B for a while and then we tried vitamin B shots... neither one helped at all. My pcp said that generally unless your body has low levels of vitamin B, taking any sort of additional supplement of it does not make a difference, I figured it was worth a shot anyways.. but no luck.

I think BellaMia is right, maybe we should set up some kind of chat room and anyone who is up in the middle of the night with nothing to do and frustrated because they can't sleep can go on and have someone to talk to! I am the same way either I wake up 10 times during the night or I sleep for 15+ hours at a time. There are many times when at 3 or 4 in the morning and I am awake I grab my laptop and search stupid stuff online just to pass the time, or end up doing work (I work freelance), I also usually text "worththewords" and see if she is awake... and half the time she is! Maybe we really should look into that? And bluesman, I know its hard but try to hang in there!

I know that when I lived in NY there were quite a few of you that lived in the tri-state area that I talked too (even met one of you!) and it was really helpful to be able to discuss local doctors etc.. with everyone. I have been living in Columbus OH for what will be three years in October and I realized that I never checked to see if anyone was in my area. If you live here, or close please message me!!

Its me again, April what state do you live in? Maybe someone on here lives close to you and you could meet and hang out? I was also thinking about your post last night, and realized that in my brain fog yesterday I might not have made much sense lol. I know I mentioned something about finding a friend who is willing to come hang out even when you are stuck in bed, but it sounds like now that you are feeling good (knock on wood), you are really just looking for another adult that you can go out and do things with and I know how much it can suck when you feel like you have nobody (although it sounds like your hubby is wonderful, sometimes you need a change of scenery), what about some of your daughters friends Mothers... are you friendly with any of them or could you see yourself becoming friendly with them? If there is anyone you could see become a friend that she hangs out with their kids maybe next time you see her (or could call her) and just say hey, I am starting to feel pretty good lately and I was wondering if you would maybe like to go out and get a cup of coffee or see a movie. Let her know that you are still not up to running a marathon or a day of shopping but that it would just be great to have some adult company for a few hours even if its just to b.s. and talk about the kids. OK...now I am rambling...time to try to dry my hair (my first attempt failed and left me laying on the floor!)

Thanks for all of your responses, I know plastic surgery is a touchy subject with some people so I was a little nervous to post about it but like I said its not something that I just woke up yesterday and decided I wanted to do... its been many years. I will definitely let everyone know how the appointment goes on Monday and what the surgeon has to say. My feelings are that if he leaves it up to his anesthesiologist and the anesthesiologist seems hesitant at all when discussing it with me then I will take that as a sign that it is not meant to be. If on the other hand they seem completely comfortable with the idea and offer to do it in the hospital etc.. then I will almost definitely go through with it (my EP also said he would be willing to talk to them, maybe they can figure something where he would be on hand during the procedure??) At this point I just want the appointment to be over so I know one way or the other!! The good thing is if I do go through with it my Mom offered to come stay with my boyfriend and I so that she can be home with me while he is at work. I got this surgeons name from a few co-workers who have gone to him. Both said they had no bruising and very little pain, but I guess that is all relative and depends on my body and is different for everyone. Time to attempt to dry my hair... thanks again for everyones input Till Monday!! -Staci

Hi all, so since I was 16 I have wanted to get a breast augmentation. I went for a consultation years ago before I got sick and decided to wait because I didn't have the money for it. Shortly after that I got sick and assumed it meant I would never be able to do it. Well I haven't stopped thinking about it (I am 28 now) and finally decided to talk to my electrophysican about it. He said it was ok for me to do it and gave me the green light. He said the only issue could be that I might not find an anesthesiologist willing to work on me because it is general anesthesia and my BP could swing dramatically. I have an appointment Monday with the plastic surgeon to find out if his team is willing to work on me, if he says yes I am ready to go, if he says no... I will drop the subject forever The procedure itself takes about an hour and the recovery (as I am told) generally takes anywhere between 3 days and a week... if I get the ok from the plastic surgeon I would wait until Sept/Oct to have it done since the Summer heat makes me much more symptomatic. I am guessing that my recovery will just be longer but when I have really bad days I am stuck in bed and can't imagine that I will feel any worse than that. Have any of you had any sort of elective surgeries requiring general anesthesia? How was your recovery?? Do you think I am crazy? (And this is something I want to do for myself, to feel better about myself, not for anyone else... so if you don't agree with my decision and think the procedure is silly, please keep it to yourself)

I think we all feel that way sometimes. You really should be so proud of yourself for making through school and graduating, I didn't get sick until a few years after I graduated college and if I had gotten sick earlier there is no way I could have completed school. You will find a job, unfortunately it may take a while because of the economy. I am 28 and have been sick for a little over 4 years and I have lost my share of friends because people didn't understand that I really was sick, or just how severe it was and once I was no longer able to go out to bars or hang out and do "normal" things a lot of them had no use for me. It sounds like you have a wonderful husband and a child who are there for you and you have all your fellow "potsy"'s, maybe you could make plans with some of the women from school that live further away that even once a month they can come visit and just come over to your house and hang out for a few hours, have a cup of coffee, talk, watch a movie... or whatever. I have a friend that still invites me out with her and her husband all the time and the majority of the time I am not feeling up to doing whatever it is but she will stop by every once in a while, even if I feel like **** and lay in bed and she hangs out with me and watches tv. Adult companionship besides our significant others is helpful once in a while to keep us sane! Keep your head up and try to enjoy your weekend, I will keep my fingers crossed that a great job comes your way soon.

I have been taking adderall since I saw Dr.Grubb last time (I think its been about 8 months), I take 10mg of the extended release pills as soon as I wake up along with my other medications. Adding that along with cerefolin nac has helped my brain fog, and concentration considerably. As I feel like the adderall starting to kind of wear off I start taking midrodrine every 3 hours for the remainder or the day. When I first started the adderall I had NO appetite and lost a few pounds (nothing significant) but as my body got used to it my appetite has come back, I also take florinef which makes you retain water and gain weight so maybe the two just balance each other out. I do notice that more often than not I am not very hungry during the day but at night I am starving. I see the doctor on Monday and I am going to discuss possibly increasing my adderall dose for the Summer. Mornings are always REALLY hard for me, and now that it has gotten hot and humid I don't feel like the adderall is helping as much as it was. Hope that was helpful!

I work but I work freelance so that when I am up to it I work 40 plus hours a week and that my schedule is very flexible... now that its getting warmer out and more humid my days at the office and working are less and less. Currently I am on day 3 laying in bed and not able to do much. I really enjoy working and have always been a work a holic but I have had to leave jobs because I was missing so many days and was sometimes out for weeks at a time. I am not sure how much longer I will be able to keep working but in Ohio you have to be out of work for a while before you are even considered for disability and if you get it, it would be barely enough to cover half of my bills never mind rent etc. so I don't know how I would be able to survive without working. I live with my boyfriend but in this economy there is NO way he can make enough to support the both of us, and its even harder because I am the "bread winner" of the two of us so it makes it even harder for me. Ugh... gotta love POTs and dysautonomia!!

So its in the 80's here today and really humid.. I am starting to seriously consider moving some place that doesn't get hot but no idea where and since I can't move today does anyone have any suggestions of things to do and ways to make this weekend not suck? Before I got sick Memorial Day weekend was always the first weekend the beach or pool, and even my friends who don't drink are out at the outdoor bars or BBQ's. Even with all the water, gatorade, medication etc in the world being outside will still just take too much out of me. My bf took our dog to this Pug Fest (I know it sounds silly) but its for charity and there are supposed to be 500 pugs there and I was really really looking forward to it. So now I am home laying in bed, dwelling on all of the things I can't do and how it is the same thing every year..... so if anyone has any good suggestions please pass them on!!!!

Very well written and as long you don't mind I would love to forward this on!

I ordered the variety pack so I could try all of the flavors... I really didn't like any of them. I tried to force myself to drink them in hopes of getting used to at least one flavor but it didn't happen. The rest has been sitting in my kitchen cabinet for months and I am back to gatorade.

I take my all of my medication before I get out of bed. I try to take it 30 minutes or so before getting up and then try to get up. I leave all my pills and a bottle of water or gatorade on my night stand, it definitely makes a difference.

I was wondering about the vests too. Dr.Grubb showed me one that has a fake white scoop neck so it looks like you have a white tee or tank layered under something but how bulky is it? Does it look all lumpy under your shirt?

I don't notice the change in my color but I have been told I get a greenish tiny to my face when I am really wiped out. Back to bed! Good night all.

I think most of us POTSY's have debilitating fatigue at least some days if not all. Today is one of those days for me, I guess that I am lucky enough that there are many days I get to the office and I freelance so I have the flexibility of working from home and a wonderful boss who is as understanding as she can be but today it took me 4 hours to get out of bed and pee and walk the dog. I was just laying here and thinking about it but I was just too tired I couldn't move (and that is with all my morning meds including adderall which usually gives me enough energy to get out of bed) but I was just too exhausted. I finally got up, I went to the bathroom and walked the dog and grabbed my laptop and now I am back in bed and was trying to push myself another 1/2 hour before I let myself go back to sleep. The days when I do go to the office that is really all I can do, by the time I get home I am so exhausted I have no energy for the laundry, or making dinner, I usually can't even make it through watching a movie on the couch (and fatigue is great for your sex life too!)... on the weekends I usually sleep a good part of each day and attempt to get out of bed earlier enough in the afternoon that I can still try and run some errands or do some things around the house, last weekend I was so excited that I got up early and went to run errands and was feeling decent so I called some friends that I haven't seen in a while and made plans for that night. Well by the time I got home from errands I was done, I was asleep for the night by 7pm and slept over 15 hours to compensate for the few hours of errands. I guess its give and take and it ***** but I think most if not all of us battled with this.

A friend of mine is an assistant editor at her magazine, I could ask her if she knows who we could contact at the show, or is she has an email or name.. I am not sure if she will know since the tv show is out of Chicago and the magazine is out of NYC but if you want to me find out let me know!

what does a sweat test test for? I mean I understand that it shows if you sweat too much or too little but what do those results mean? I have hyperhydrosis and its been getting worse lately, I even sweat when I am cold. All my doctors are aware of this but I didn't know that there was a test for it and I am wondering if I should have the test and once we get the results then what do they do with that information??? I have used drysol etc but it burns my skin too badly, the dermatologist has been trying to get my health ins co to cover botox injections (I guess that stops sweat), but now this post made me wonder if the excessive sweating is a sign on something else besides autonomic dysfunction. Thanks

I really like that!!

No changes with my period, I did see the EP yesterday and he had possible good news. He thinks there is a possibility that I do not need as much medication anymore. Besides the crazy change in BP and HR I have also put on about 6-7 pounds in the last six months, and my diet hasn't changed, I haven't been able to exercise in years so that hasn't changed and I figured age was just creeping up on me. I have always been thin and never even considered the weight gain was POTS related... So he thinks that I may not need to be on the florinef anymore and can possibly cut down on the cymbalta as well. He said if I had too much florinef in my system and more than my body needs that I would gain more water weight than I did previously on the medication, and that it would cause my bp and hr both to spike. Today was my first day of cutting the dose in half and I have to monitor all my numbers closely and check in with his nurse weekly and depending on the results he will try to get me off of the florinef completely and then maybe try to reduce some other meds. I HOPE this is the case, I have been waiting, and waiting, and still waiting for the day that something changed with my health in a positive way and reducing meds would be fantastic! Keep your fingers crossed that the med reduction works and that I am not just starting to get hypertension and get fat because I am getting closer to 30 lol.

Thanks for all of your responses, I have been trying to eat healthier the last few weeks because I am packing on some unwanted pounds but I don't think that would affect my bp. Maybe it could? Besides that everything is the same, meds, fluids, day to day activity etc... Hopefully the doctor has an idea!

I have an appointment with my local electro-physiologist today but the last 3-4 weeks (I have not changed anything, no meds etc) my bp which has always been really low, has all of the sudden spiked up! In the past with all of my medication I was lucky if I ran 100/55 but most times I was in the 90's and without the meds, forget it I couldn't even stand.. but now even in the morning before I take my meds my bp is anywhere between 130-145 over 67-115!!! This morning I took it right after I got out of bed, I figured I would check it before taking all my pills and it was 145/115!! I couldn't believe it, I have never in my life seen numbers like that, however I am not feeling better I think it actually makes me feel worse. I called the doctors office to see what I should do and they said to take my morning pills as usual but to check my bp again before I start taking my midrodrine (I generally start that every day at 1pm and take it every 3 hours) and that if my bottom number is down I should take the midrodrine and they will see me this afternoon for my appointment. Has anyone else had this happen? Even before my diagnosis and as a kid I always ran very low and I am little freaked out that all of the sudden with no changes it is so high. I always assumed that if my bp was ever high I would feel a lot better but that is definitely not the case. Does POTs go through changes like this?? Does this mean I am moving forwards or backwards in my road to recovery? Help!??

Last time I saw him was 6 months ago and he added Cerfolin NAC to my list of medications.

I am home today with a sinus infection and no you are not alone.. its amazing that getting a cold or sinus infection affects us "Potsy" people so much worse than a healthy person. I have been laying here coughing and sneezing and thinking about how I feel like I got hit by a truck. Ugh... hope you are feeling better!

I keep fingerless gloves at work too!! The doctors have told me the key is keeping your hands from getting cold, like in the grocery store in the frozen aisles etc because its once they get cold that you can't warm them no matter what. Have you tried drysol? Its a prescription deodorant. It smells really bad and burns but it you can tolerate it, it does help. You put it on before you go to bed and wash it off in the shower in am. With insurance its only $10 for a bottle.. my pcp gives me the prescriptions but I think you can ask a dermatologist for it too. If you try it, before you put it on use the hair dryer on the cool setting for a few seconds on each armpit (sounds crazy but the doctor suggested it bc it was burning and itchy so bad I couldn't sleep) and it did help.