Ash

Thank you guys for your suggestions I have used almost all of them! LooneyMom- setting goals that I had to be up and off the couch and complete a task has helped me be a little more up right and productive. I don't have compression stockings but am going to make an outing to the store tomorrow to try and get some. E. since I was trying to get pregnant I had stopped taking all my medications other then prenatals (unless it was an emergency) but I do have a script for Midodrine and kinda forgot about it, so thanks to your suggestion I have been using it again. I did also get my pain medication switched to something else that I could tolerate better and have been trying to balance out the gastroparesis with diet and miralax. I also talked to the Dr again as well as my boss and they both agreed to give me some more time off if I need. I just feel so guilty about it since in my career in means I have to reschedule my patients and I am already so booked out, but since I am registered dental hygienist and that requires bending right at my incisions I don't think I am going to be able to work the full days this next week. But luckily my doctor was a little more compassionate when I saw him for my follow up appt and he did say it was a major not a minor surgery plus with the dysautonomia I just need to listen to my body and go slowly so now I just have to work on not feeling so dang guiltily about sitting on the couch.

I am really hoping someone can give me some ideas on how to cope after surgery with PoTS. If you have read my ectopic and methotrexate post from earlier you know that I ended up with internal bleeding last Saturday and emergency surgery. The 30 min procedure took over 2 hours. The doctor has never seen what he saw in me (of course my body just cant be "normal" once in my life) it seems maybe 10 plus years ago my right tube must have twisted around an adhesion left from having my appendix removed when I was 3 (which makes sense, as I was in the hospital for a week with severe pain when I was 13 with what they thought was a twisted adhesion/bowel) but it must have been my right fallopian tube, but it was twisted and knotted, my right ovary was just a streak of scar tissue, and then everything was "glued" to my uretha, the two major blood vessels in my pelvic area and my uterus so he cleaned out a lot (I am left with my uterus, left fallopian tube and ovary. Thankfully. Although in a month I will have to do a hsg test to check my left tube). Now, he is thinking that maybe the ectopic is in my left side, because the right side was so bad, but we won't know for sure until the pathology report comes back. I was in the hospital for 3 days and 2 nights (should have been one night, but it took a while to manage my pain and stabilize my breathing). Now when the doctor came in and said I needed surgery I panicked not so much because of having the surgery itself but because in Dec 2011 when I had surgery to have my gallbladder remover it led to a bad flare and diagnosis of PoTS. I was terrified of feeling that bad again and well It has been 6 days now since surgery and I am miserable. I called my OBGYN two days ago, who pretty much said I should be feeling better then what I am (I think he forgot I have dysautonomia).. I am still in pain when moving, and extremely dizzy when I stand up and exhausted. I am sure the combination of surgery and the methotrexate shot isn't helping. But I need tips or advice on how to get off the couch. I have been trying to drink a lot of water, am eating salt (and chocolate) like it is going out of style, I have also tried to push myself to walk some but can barely make it to the bathroom. Any ideas or advice would be greatly appreciated especially since I have to go back to work in a week and a half.

I don't have any immediate family with varicose veins other then an aunt who also has Crohn's disease. But I have started getting a few of my own since the onset of PoTS.

Thank you both of you for your support. Momtogiuliana- I have posted on a pregnancy board about the ectopic portion but haven't found anyone that has had the methotrexate shot and pots. However, that isn't my only concern now. I ended up with internal bleeding Saturday and emergency surgery. The 30 min procedure took over 2 hours. The doctor has never seen what he saw in me (of course my body just cant be "normal" once in my life) it seems maybe 10 plus years ago my tube must have twisted around an adhesion left from having my appendix removed when I was 3 (which makes sense, as I was in the hospital for a week with severe pain when I was 13 with what they thought was a twisted adhesion/bowel) but it must have been my fallipion tube, but it was twisted and knotted, my right ovary was just a streak of scar tissue, and then everything was "glued" to my uretha, the two major blood vessels in my pelvic area and my uterus so he cleaned out a lot. Now, he is thinking that maybe the ectopic is in my left side, because the right side was so bad, but we won't know for sure until the pathology report comes back. So now I get to deal with all the "fun" extras that happen when you have PoTS and surgery. I was in the hospital for 3 days and 2 nights, but sadly wish I was still there, as sitting at home by myself feeling this bad is a little scary.

Hello Andybonse, I am sorry you are having to go through this. I was officially diagnosed withPoTS February 2012. Since then it has been a constant learning curve but I have found at least for me that it does seem to get a little easier. When I first got diagnosed I had a 24 hour Holter monitor test done during that test I was unable to get off the couch, my highest heart rate I think the whole test was 130 granted that was just getting off the couch to walk to the bathroom. A year later I redid the Holter monitor test and over 24 hour. I cooked dinner, did a little house work, went out and fed my horses and lived the life that I have learned to live with since having pots. My cardiologist walked into the room when he gave me the results of the test and asked me what I thought my highest heart rate was over the 24-hours. I told him that I don't take my heart rate as often as I used to but I would guess somewhere around 155 (since that was the number i saw when i did decided to take my HR) His response was shock he said not only had my heart rate hit 180 once but it got up to 180 multiple times throughout the 24 hour period. And he is asking how I functioned with a hr that high where a year before when I did the test I wasn't functioning at all at 130 bpm. So I told him which is probably also one of the biggest things I can tell anyone first diagnosed with Pots is overtime you just learn how to live with it you don't necessarily feel a hundred percent better or like you did before you got sick but you know how hard you can push yourself before you crash. In the year, well over a year now since being diagnosed I have learned that it takes a lot of water and a lot of salt, That as much as you want to lay on the couch you have to push yourself to slowly get off the couch even if it just means walking to another room to lay down, you also have to know that there's going to be days or weeks when yes you don't leave the couch but over time you can learn to "manage" some of your symptoms. It used to be for me that as soon as I stood up and I got dizzy I laid right back down and now although I still get dizzy when I stand up I know that it's coming and that it is not necessarily going to "kill" me so I push myself through it and over time I just almost learned to ignore it in a way. A year later I know that I can't spend hours outside in the heat but I do go outside for a hour or two and I do do things with my friends, I know that if I wanted to go out and spend an evening with them, I need to take it easy in the afternoon and the next morning. I have had some drinks since getting diagnosed and for me it's not worth drinking because I don't feel very good when I do but I do think there are a lot of people that do drink and are okay with drinking with pots. I know it can be really discouraging especially in the first few months of getting diagnosed. Just try to hang in there and know that over time you might not get your old life back but you will get a new type of life, that in time you will learn to love and be okay with. I do work three days a week as a dental hygienist and I have tried lots of different medications although I currently only use them if I absolutely need to because we are trying to have a baby.just know that PoTS doesn't have to be the end, you have made a great first step, there are a lot of really caring and knowledgable people on this board who will help you get through this crazy journey.

Hello Everyone, it has been a couple months since I have been on here. Some of you may remember my Clomid post from back in April. Well the Clomid made me extremely sick with messing with my hormones and so I've had a hard time functioning let alone get on the computer. And then finally three weeks ago we got a positive pregnancy test and all of those extra symptoms I was having were suddenly all worth it. That was until I started spotting last week, which at first the doctor didn't think much of it at first as it is semi common in normal pregnancies well after having my blood hCG levels drawn every other day for a week and them coming in rising very slowly and even dropping by a point until it rose again it was finally determined on Tuesday after not being able to find anything in my uterus. And then with a combination of not being able to find my right ovary on the ultrasound twice (still haven't found it) and having some pain on the right side the doctor decided that the pregnancy was ectopic and the best thing to do for my safety would be to have a shot of methotrexate. Since having the shot Tuesday afternoon I feel like I've been hit with a really bad flu and I am wondering if anyone has ever had this shot with pots and if so how did it affect your symptoms and how long did it last? I am really nervous about feeling even worse (if its possible) and would really appreciate any suggestions anyone has. I know the biggest thing with this shot is that it depletes your folate and I am nervous I guess how it will affect me as my immune system doesn't seem to be the best compared to most women that get this shot for ectopic pregnancy. Any advice would be greatly appreciated thank you I will also be going back in Saturday and Tuesday to make sure the hcg levels are falling correctly, if they are not then I will get a second shot of methotrexate. The doctor did also warn me that even with the shot 1 in 10 still end up with surgery which I am praying I can avoid.

Hello London, sorry I just saw your question. I have never been tested for my type but the cardiologist and I both believe I have the Hypo type of PoTS. I also saw your concerns with taking it and low libido. I had no sex drive before wellbutrin now my husband is pushing me off of him because despite how tried or PoTSy I am I want to have sex. Not sure if it is 100% due to the medication or if baby fever has something to do with it.... But I would recommend trying it, you can always stop taking it if you don't feel like it is benefitting you or you are getting bad side effects.. I know I was skeptical when I first started on it and now I am so happy I did as it has helped give me some of my life back

I am on just wellburtrin 150mg 2 x a day I take one in the morning and early afternoon. I am not on an SSRI and only take BB and Midodrine as needed. For me wellburtrin has helped with the fatigue it seemed to help give me a boost and I can tell on the days I forget to take it either in the morning or afternoon as I am a little more worn out. I have not noticed it lower/raising BP or a difference in my heart rate just a little more energy and maybe a little more help with concentration.. Does your doctor now about PoTS I know I have brought up things by saying I belong to s support group and have seen that (insert medication) may help with symptoms, what do you think about it? The first trial run I did for it my internist put me on for a month he gave me the option of wellbutrin or Ritalin (gave it too me for CFS he knew nothing about PoTS) I chose wellburtrin as I thought Ritalin might make my HR jump too high. But then after my month ran out I called the internist asking if I needed to see him again, or if he would call in another script, etc and I never heard back. Well then the cardiologist asked what I have been trying with the other doctor and he agreed if I noticed a difference on it then he would refill the script, so I have a 6 month supply called in now. I had tried celexa a SSRI while having symptoms and prior to getting diagnosed as I kept being told I was depressed so I gave in and tried a medication I was on it for a year and did not see any changes with my symptoms and continued getting worse, but I do think for some people SSRI work good both alone or in combination with another medication like Wellbutrin. : )

Like you during my journey I often heard from doctors that I was just depressed or stressed out from being in college (I checked no to first question, as they never said anxiety). After, going to countless doctors one did diagnosis me with CFS and pretty much told me to go on and live my life. I thought CFS fit too a point but couldn't explain everything. It wasn't until I ended up in the ER with my heart rate going from 50-60 laying down and 160+ standing up that the doctors sent me to see a cardiologist. All they could tell me in the ER was that they don't know what is wrong but something is gong on. I did google high heart rate and found PoTS and was expecting when I met with the cardiologist the next day he wouldn't even bring that diagnosis up as I read not many doctors knew about it...well much to my surprise after telling him my life history and what I had been going through for the last 3-4 yrs he said two things that changed m life 1: was he told me he didn't think it was in my head or depression, there was something going on and 2: that he thought I may have something he has heard of called PoTS...from there he sent me to an internist to rule out other things and then officially diagnosed me a few months later. And yes like you it was so hard hearing time after time that every test was negative..the only positive tests I have ever had was for a strep infection in my blood and low Vit D.

Okay everyone, I need some input.if you read my hormones and clomid question post, you will see that my cardiologist wanted me to get a test to check for hormone imbalances, so off to the OBGYN I go (had to see the new partner in the practice and not my normal OBGYN as he is booked out forever ) well the whole time he was talking to me I felt like he wasn't listening or running the correct test and kept questioning that as well as called the office to ask questions and confirm the test he was running would show a hormone imbalance. The Doctor and nurse both assured me it would...yeah wrong! So the test they ended up doing was a Clomid challenge, which doesn't show hormone imbalance but shows fertility and if you have any problems with ovulation.. So today I went into see him to go over the results and after being in there for a total of five minutes he just kept telling me that I had no problems with ovulation and should not have any problems getting pregnant. I asked him about my progesterone and estrogen levels and he just said that the test they did was normal. So I asked him if I could go back to my cardiologist and tell him that I do not have a hormone imbalance his reply " you dont have any problems with fertility so your hormone levels should be in balance and I don't think a hormone imbalance would be causing any of your symptoms". So I left feeling really upset and disappointed as I really had high hopes that this other doctor would be able to give me some insight on something or at least listen. Now comes in Dr. Google, so I googled good tests to check for hormone imbalance and found that the 24-hour urine is a good test to run to check your hormone levels and I am actually in the process of doing a 24 hour urine right now for the cardiologist to check metanephrines which I think is related to adrenal function? So I called the cardiologist And asked if he could add the hormone panel to the 24-hour urine I'm currently doing, I got a call back saying that he could not run that test as it is out of his realm but to call the OBGYN and just ask them if they can call the lab and add it to the order. So I called the OB/GYN left a message with the nurse and she just called me back saying that the doctor doesn't feel that Test is necessary and that if the cardiologist wants it done he needs to be the one to order it. So, this is kind of when I lost it and went off on the nurse :/ and said that I need to know what my hormones levels are and that I never asked if I was fertile as this is not a concern at this point but needed to know if my dang hormone levels where out of whack. Because I cannot go on living the way I'm living anymore, I am so tired of being tired and having a high heart rate, digestive problems and insomnia and extreme fatigue and all the symptoms I live with every day and the only tests I have not had done in the past year have been to check my hormone levels and my adrenal function. So I need him to check my estrogen, progesterone and testosterone and any other hormones... Because, there might be a small chance that hormones are my problem, or part of it and if she were in my shoes she would want to test everything under the sun to feel good again, because as of right now i don't have a cure! So she is going to talk to him and call me Monday and let me know but my question now is there any other hormones that need tested that I need to ask to have done, the cardiologist doesn't know thus why I am seeing a "specialist" but it seems like I am the one that needs to tell him what we need tested. I do feel bad for yelling at the nurse but I guess at least I am hopefully gonna get results. Anything else you can think of would be greatly appreciated and sorry for the long rant but I really needed to vent to someone sorry for all the grammatical errors I am using the voice type thing on my ipad as I am feeling too POTSy to type and it isn't doing the greatest job.

Nice article.thanks for sharing

Thank you so much Friedbrain! I am sorry you had to go through all that, but glad you found answers and had 2 healthy babies. I have wondered about progesterone as well, and will ask my doctor this Friday if this last test tested it and if when I do get a positive pregnancy test if I can come in and have him do it, if not I am going to go and see my reg OBGYN who has always been great and is very good at working with high risk pregnancies and referring and working with someone more specialized if needed, he is just booked out for 2 months :/. Have you noticed a difference at all with any of your symptoms now improving when your hormone levels are balanced correctly?

Thank you guys for the information, I meet with the doctor again next Friday to go over other results and may bring it up casually Relax- from what I have read wellbutrin has been looked at for being used as a weight loss drug, not sure if it is only for people that have an over eating addiction to food type weight gain or just in general, but it is also used in smoking cessation so not sure how it helps exactly in breaking "addictions" there seems to be a lot of info on this forum on wellbutrin and some people respond well to it and some not so much, but that is fairly normal across the board with all medications. I have not gained weight on it, it does seem to make me not hungry or have as big as an appetite but I also had that before getting on it, it would just come and go. I have also lost about five pounds since going on it again a month ago. i did trial run for a month, loved it but got off it as we are TTC, but got back on it as it was approved by my normal OBGYN and cardiologist, to use it until we get a positive PG test and then we will go from there. But so far it is the only medication I take daily, and the one that helps my symptoms the most, it does help with increased energy and maybe with brain fog slightly for me....

Thanks Corina! I am excited to hear it helped you get pregnant the first try! I completely agree I really do think that PoTS and hormones are interlinked at least when it comes to fertility. I truly question if both miscarriages where possibly caused by the blood being pulled away from the baby, as I know the reason myself and I guess many people with dysautonomia get so many stomach issues, is or can be related to the blood being constantly pulled away from our digestive tract. it is hard though because my husband still doesnt seem to understand why it upset me so much as we were not very far along, I keep trying to tell myself that it is fairly common among many women who don't have PoTS to have a miscarriage and God has a plan, but they were still my babies and I loved them regardless....I did call the nurse to see why the clomid was used for hormone testing and she gave me a solid answer that made sense, I have a few more days of the clomid and then get my blood drawn on Sunday and next Friday will get the results, part of me is praying something comes up abnormal, so I may be able to treat it and maybe get rid of some symptoms, and then part of me hopes it is like all my other tests and is normal as the infertility road scares me. As far as the clomid for PoTS pts so far on day three the only symptoms I have had is extreme bloating (I look 3 months pregnant) and I have had 2 real hot flashes, not just my "normal" go from freezing cold to a hot flushing feeling, but sweating every where for 5 mins..all I know is if that was a taste of what women go through during menopause I am not sure I want to get to that point :/ I am sure the mood swings will come though..but it doesn't seem to make my actual PoTS symptoms worse, other then maybe more fatigue, that or I am really used to feeling crappy all the time

Thank you Sue, I am so glad to hear it helped you get two babies. Do you remember if they did or how they did fertility testing prior to prescribing the clomid. I have never had any of my hormone levels tested and it concerns me to take a fertility drug, when I am not even sure I have a hormone imbalance or if it is something they normally do in testing a hormone imbalance....Got to love all this medical stuff.

Good luck Katybug , keeping my fingers and toes crossed that it works for you. Keep us updated

Okay, so I am unsure where to start on this. But after talking with my cardiologist I brought up that in all my testing these last few years I have never had my hormone levels checked, and after looking at some symptoms of hormone imbalance I asked him if it would be something to look into (well hubby is also convinced it is hormones, i think he is just finding something to blame for my roller coaster emotions ) He agreed and was shocked it hadn't been done yet, well of course he tells me that he would be happy to do the blood work for me but has no clue what to run, and what results to look for since that is not his specialty, and sent me to my OBGYN and then to come back to him with my results. Easy enough, right? Ummm no! Lol. The normal doctor I see was booked out for a month so I scheduled with the new doctor that just joined his practice (only had to wait 2 days, yay) so I met with him, tried to explain what PoTS is and dysautonomia since when I asked if he had heard of it he said he has not, and went on to explain some of my symptoms which he seemed to half heartily listen too. In the end he just kept telling me that because we haven't been trying to conceive long there isn't any reason to test for infertility..so I kept explaining I don't want tested for infertility I want to know if I have a hormone imbalance that may be causing some if not all (wishful thinking never hurt, right ) of my symptoms he said he doesn't think it would but if I insist on having him do the test he would, I said my cardiologist wanted it done so he agreed. Okay now my questions and sorry if I am sharing more then what you all want to hear....I got a call today that I have to be on my third day of my period and get blood work (which came a day early, so it means day three is Sunday, so I get to go through the ER to get my labs done, yippee :/) then on Tuesday I am to take clomid for 5 days, then go back to the ER as it will be Sunday the next time my blood needs drawn again, and then we will go from there, oh and to do it all correctly my hubby needs to donate a "sample" yep he is thrilled about that one! So talking to my husband he keeps asking me if they are really checking for a hormone imbalance or infertility, as it seems a like a lot? So is this the same test do any of you know, or do I need to ask for a different one? And has anyone ever taken clomid, I know it is only for five days, but I have been so bad since getting periods again, this last month I have been cramping for 18 days, granted I did have a cyst on my one ovary but dang it ***** and makes me really miss my mirena and no periods for 4yrs, it did make a huge difference. So I am worried that five days of clomid might well send me into a down word spiral and since the days I will be taking it falls into the days I work, I am worried about functioning..okay sorry for ranting, this just seems so over whelming, I really want a baby, and have had two miscarriages in the past, but all I want to know now is if my hormones are causing everything......thank you in advance for any insight

I agree 100% with Issie! I know it can be frustrating when a medication you want to work so bad ends up not helping at all, I remember being devastated when different meds I have tried did nothing for me or made my symptoms worse, especially since many of them were ones that most people loved and saw huge improvements with. So hang in there!

Sending positive thoughts your way.

I am so sorry you have to go through this pumpkin! Sounds like your mother in law and mine have been talking...they are sooo much fun ; ) unfortunately I heard this same thing a few weeks ago, only it got brought up my my husbands grandmother (the only family member who asks me about my condition) she kept saying "we'll I heard it is unsafe for you to have kids" " I don't think you can have them" etc...I informed her that yes until December my cardiologist and OBGYN wanted me to wait to start trying until they could figure out my symptoms and how to help them, but that I have there blessing to start trying now. In fact my cardiologist is hoping that pregnancy will help me feel better as it increases blood volume, and the only precaution is that I will have to see him more and he wants to be in close contact with my OBGYN. The only thing he is concerned about right now with having a baby is postpartum and that I will most likely crash around the 6 week mark, so just be prepared and have help lined up. But in his words " you already know what exhaustion feels like, and how to deal with horrible symptoms, so you have to decided if you want to put your life on hold or fight through it to enjoy it" oh and that I should be better prepared since I am not going from lots of energy to none like most momma's and already know how to "function" on no sleep when I asked her where she heard this she said my mother in law told her " they better not be trying for kids she needs to figure her own stuff out first" okay my MIL has never once even when I was in the hospital for 13 days asked me about my health, I don't even know if she knows what I am diagnosed with! Sorry ranting. Lol. But this is also the women who six months ago told me " that she is too young to be a grandma, so we need to hold off on having babies" it is amazing what we put up with because we love their sons

Hello, I am hoping somebody will be able to answer this question for me, so that I may better be able to inform my doctor..so my cardiologist has me on wellbutrin to help give me some energy, and so far it is the only drug I noticed a marked difference with. Well he wanted me to go to my OBGYN to have my hormone levels tested, as it is the only blood test I haven't had done and I have had 2 miscarriages. My normal OBGYN was booked out for a month so I went to his associate, it was the first time I have met this OBGYN. Well aside from arguing with me about doing a hormone panel, just kept saying that it is too early to test for infertility ( haven't been trying for a year) and since I have had miscarriages it does mean I can get pregnant, soi kept explaining to him that I don't want the test for infertility but see if my hormones are imbalanced and may be causing some of my symptoms (he doesn't think so, but also didn't ask what my symptoms really are)....okay I will get to my question, when asking what medication I am taking I told him wellbutrin to help with energy, he kinda looked at me and semi rolled his eyes and stated "well I don't think that's the case" I then told him I am not depressed and that it was prescribd to help give an energy boost ....but I am hoping that maybe someone can explain to me why it is used and how it works so next time I have a doctor challenge the reason I am taking it I can politely inform them of why it is used a how it works. I have tried searching on google but haven't really found an answer. Thanks in advance for any replies.

It is always so helpful when something happens in our day that can make us laugh. : )

Hope things go well for you!

I am 24 and have never had the chicken pox vaccine, I did get the chicken pox when I was 3-4ish and got a fairly bad bought of shingles (have a scar from where it came out at on my back that has no feeling due to nerve damage) I was 10 when I got shingles and I believe the only reason I have scarring is because my parents did not take me to the doctors until it had already crusted over (doctor was surprised they had waited so long since it feels like the area it is in is on fire). ..however, since then knock on wood I haven't had another outbreak but I have had phantom pains in areas when my immune system was really down that felt like I should get the rash...

Most of my life I have had symptoms of gallbladder but it wasn't until last December when I was admitted to the hospital they looked at it as a possibility and it actually took 2 different hospitals and 12 days before they decided to take it out..the doctors kept looking for other issues, and since there where no gallstones, I was young and not over weight they dismissed it. It wasn't until they did the HIDA scan until they saw that it was barely functioning. The surgeon said my gallbladder was covered in scar tissue and has probably not been functioning right my entire life. However, it wasn't until after surgery that I started having bad PoTS symptoms and got a diagnosis. And as a side note I haven't noticed much difference in my stomach issues but per my cardio doctor that is due to PoTS, I was also diagnosis with a hiatal hernia in the hospital and the doctor said I could have it fixed if I wanted but didn't see any reason to do it..oh the big difference I have noticed is weight loss since having the GB out, Although I eat a healthy diet, it seems like I have to eat more healthy fat foods (i.e. peanut butter, nuts) now to keep my weight at 117-120 when I was admitted to the hospital I weighted 159 and although I wasn't "technically" overweight, I was unable to loose any weight despite trying, while 2 months ago I weighted in at 114.