cmreber

Thank you all so much for your encouragement and kind words! I have always loved how everyone in here is so supportive of each other <3 @songcanary I will so give him an extra hug...he definitely scored some serious points with this LOL! I'm very sorry to hear you are going through a flare up and I hope it passes quickly for you! Those are never easy, especially if they come after a long stretch of feeling better. I am also so sorry you never got the support you needed and deserved... but that just means you are that much stronger for getting through by yourself, and that is an absolutely amazing accomplishment!!!! @StayAtHomeMom <3 <3 <3 Thank you! Whenever I'm at my lowest, I always try to remind myself that nothing is permanent and that there will come again that light at the end of the tunnel. @KiminOrlando thank you so much!!! <3 <3 <3 @SarahA33 thank you!!! It really is helpful to have some good people in your corner. I'm pretty sure my theme song over the past few years has been "With A Little Help From My Friends"! @DizzyGirls thank you so much! It truly was indescribable, and a moment I will never forget. I definitely plan on keeping my momentum, as best I can <3 @BuffRockChick THANK YOU!!! <3 I'm so glad my post might be helpful for you on your journey, but I just know you'll get there! Just know I am over here rooting for you!!! xoxoxo!

I just wanted to share here, because I know everyone here understands how important the victories are to us, living with this stuff day in and day out. But, YOU GUYS, I completed a 5K mud obstacle run! I never, ever in a million years thought I'd do that, after being diagnosed with Hyper POTS in early 2011. I have had so many ups and downs over the years, and many, many dark times. Things have been looking up for awhile though, and I have been working really REALLY hard trying to get back into shape, but not do so much that I fall right back to where I started (what a balancing act we all have to constantly do!). My first thought was that there was no way I could do it, but then I figured that was just why I should try anyway LOL! Fortunately for me, I have an amazing, rockstar of a husband and a wonderful, dear friend who have both been rocks for me throughout this whole thing. They did the entire event with me, helped me when I needed it, motivated me when I was faltering, and I could not have done it without them. I'm just so excited and this is seriously my biggest victory to date. I thought I would share a positive post for you all! <3 <3 <3 Giant hugs and lots of positive energy to anyone struggling today!

Oh I am so sorry all of that happened. That is awful! I never had to have the ERCP, but yikes!!! I hope things start improving for you <3

This might be a helpful article all about the Valsalva Maneuver and results, and it also goes into dysautonomia. http://www.sciencedirect.com/topics/page/Valsalva_maneuver

Has she ever been checked for PCOS? Both a good friend of mine and my sister-in-law have it, and it affects so much: definitely all over the place menstrual cycles, heavy bleeding, weight gain, hormonal issues, predisposition for diabetes, among other things.

They actually make the cooling neck wraps that look like scarves! I have a couple and they are a real life saver when it gets above 80! Definitely be really well hydrated before and take water. I'm not sure if anyone else finds the same, but I actually feel better in the heat with less salt than normal, at least during the day; I still heavily salt my foods, but in the summertime, I actually only take my salt pills before bed. Maybe it's the water retention or something? Not sure, and it could just be me! LOL! I have only recently gotten on an SSRI, so this will be the first summer on it. So far, we've had a few hot days (high 80s) and it seems like shopping was a lot easier than it usually is when it's that hot, so it might be helping.

Oh good! They usually recommend someone with you for the first 24 hours anyway, so I'm glad she'll be with you! Man, sounds like you guys have a lot of things on your plate right now >_< That was probably a good idea with the dogs. The less stress the better! Also, I found that cleaning the house before, and stocking up on lots of foods that are easy to make helps immensely during recovery! <3 <3 <3

I definitely noticed that my desire to be intimate took a bit of a dive after my diagnosis. I think, for me, it was difficult to have a drive when I felt so poorly all the time, and especially when I barely had energy to get out of bed. Over the years, it has gotten better, and, especially after figuring out how to get back to exercise, it helped with the energy levels. I am probably still not back to where I was pre-POTS, but things are definitely a lot more like they used to be. I think some of that was also me mentally coming to terms with how different my life was, and how differently I felt I had become. I fortunately don't have any nerve issues that hinder how it feels for me, but I can see how that would change things if that is the case for her. I definitely think openly talking about it is good for both of you, and perhaps, she might want to discuss with her OBGYN. I know that a lot of times, diminished libido can be effected by hormone issues, and perhaps there is something she can try to see if it helps, birth control, hormone therapy, etc. If not, maybe you guys can do other things that create intimacy without the actual sex. Massages, cuddling, that kind of thing? Not the same, I know, but definitely might help with the lack of closeness.

So sorry you're going through all of this! I've had three surgeries since my initial POTS diagnosis: knee lap, gallbladder removal, and lap for endometriosis. I was super nervous with my first one because I had no idea how it would go with the anesthesia, but I have always let them know ahead of time, gotten some extra IV fluids, and I always do fine. I do take a little bit to wake up, but there have never been any real issues, and I seem to tolerate it all just fine. My advice would be to take extra care when you do first get up; for me I do get dizzy/tachy/pre-syncope throughout the first day due to the aftereffects of anesthesia, but I usually just go sleep when I get home and be extra cautious to move around the first day (my hubby is always home the entire first day, so make sure you have someone with you!). I would definitely let them know your concerns going in, especially about the bradycardia, just so they are aware of everything beforehand. Good luck and let us know how it goes! <3

For a long time I was able to mostly get my symptoms under control, at least enough to go about life in a fairly functional manner lol! However, the one thing that I could never quite get a handle on was my anxiety and all of the mental and physical stress that came from that. When it would be its worst, I would either have many panic attacks, or I would be incredibly short-tempered, and I would spend a lot of time removed from people, noise, etc. Unfortunately, my husband and I own a business and our office person was out due to medical issues, so I had to muddle through most days. I eventually talked with my doctor and we decided to give Zoloft a try. Everyone is completely different, and I don't think everyone should just jump on another medication (I mean, most of us are on enough as it is!), but it seriously changed my life. I have read a lot about SSRI's helping HyperPOTS people, and I honestly think this was the missing piece for me all these years. I have probably only had one major panic attack in the year I've been taking it, and my husband has mentioned that he feels like I am truly back to my old self again. I agree, because I FEEL so much more like my old self again! I do know that there are lots of dietary supplements that are helpful for anxiety as well, to keep away from the medication route.

Hello @Altruism I am so sorry to hear that things have gotten bad again, though I am so glad to hear that you were able to get back on track for awhile! I think that is one of the hardest parts of this thing, the ups and downs, feeling like you have beat it only to get hit by another flare. The good news is, we do sometimes get those breaks, for which I am grateful. I have been off and on here for the same reasons. I get back to things and then I get hit again. But I have found that my periods between flares have gotten longer and better, and when I do have a flare, it seems to be brought on by something else. The last horrible one, I found out I needed my gallbladder out. Once I did that, things got a lot better. I am slowly learning to take the good when it comes and do what I can with the bad and wait for the storm to pass. There is always a light at the end of the tunnel, even if there is another tunnel waiting down the road. It sounds like you are on the right track, restarting with some of the things that helped you before. I also very much agree with @songcanary about resting when needed; I have finally realized that I don't need to try and be superwoman to push through, because it only makes things worse. A huge part of my recent (and most steady) success has been lots of self-care. Downtime when I need it, sleeping in when I need it, things that make me feel good and relieve stress. I used to feel selfish, but now I realize that taking care of me does in turn take care of those I love. Keep your chin up and please keep us updated! xoxoxo

Super interesting, BuffRockChick! I also get the Bier spots, though I never knew it was weird to get them or that there was a name for them! That makes a lot of sense for me, since my form of POTS is hyperadrenergic and I am currently on a beta blocker, which helps a lot. Yes, thank you Finnmin!

Interesting. I tried and also got a white line.

I'm glad you are seeking other opinions. I had the best luck with a neurologist also! Unfortunately, so many doctors have never even heard of it.

I agree with Kim, if it is a beta blocker, most pharmacists don't understand what we use it for with POTS. I've also had many MA's say, oh, metoprolol for high blood pressure? But, in reality, it does help with the high heart rate and makes symptoms a lot more tolerable!

So sorry you are having a hard time finding a doctor who will listen, it is one of the most frustrating parts of POTS! (Well, among all of the other super frustrating parts LOL!) But not being listened to when you are actively seeking medical help, that just makes everything so much worse. People think, oh you are too young to have anything wrong with you, or you look too normal to have anything really wrong with you. I definitely experienced some of that in the beginning, but I eventually found people who did take me seriously, and it made such a huge difference. Maybe see if you can find someone who specializes in autonomic disorders? Not sure where you are located. My first stop after a wonderful cardiologist at Stanford finally diagnosed me with POTS was the Mayo Clinic. They not only listened to me and confirmed the diagnosis, but also helped me understand it better and put together a plan for me to try and get my life back on track. Don't give up on getting help, you just need to find the right person to help you sort through everything. It can be a long road, but we're all here for you to vent to in the meantime <3 I hope you find some answers soon!

Thanks guys! And also sorry for everyone dealing with the anxiety and panic attacks. Seriously awful stuff >_< For my own self, I've always felt like it's kind of a chicken and egg situation...which came first? lol! But after reading some responses, I'm feeling like maybe a lot of us have always had some degree of POTS symptoms, even before the syndrome really started presenting itself. I actually can remember being a teenager and getting super light-headed in the shower, to where I would have to sit down and stick my head out of the shower curtain. At the time, I never thought anything of it, but now that I know what I do, I think I always had some dysautonomia going on in the background, just not bad enough to really think there was anything wrong.

Thanks everyone! It is interesting to me that many of us had at least a small degree of anxiety even before all of the full-blown POTS stuff.

Hello all! I was just curious how many with HyperPOTS (or other) have lots of anxiety symptoms (I'm pretty sure most do), and how many that do had it in some form prior to POTS, or if it came more as a byproduct for you. I never really thought about it in my teen years, but I do believe I had mild anxiety, even before all of this. Now that I have HyperPOTS I definitely have insane levels of anxiety that didn't used to be there, especially when I'm experiencing a flare, but I do wonder if there was a correlation, even before my diagnosis. I was just curious to see what everyone else's experience was pre and post POTS. Hope you all have a good day!

Gotcha! Yes, I'm also northern Ca, up by Yosemite area (Sonora). I completely understand, that is NOT a cheap trip and it is also super exhausting! You really should be able to get in to see him, and it is so weird they haven't been able to make that happen for you. And I've never tried UCSF, but it really is astounding to me how many doctor's don't know a thing about dysautonomia. The neurologist I went with is at Stanford, so that's where I've been going, though I really am only going on an as-needed basis there. My GP actually has listened to everything Mayo Clinic recommended and has done a lot of research along with me on POTS, so she has really been my go-to over the past few years. Again, though, mine doesn't sound as complicated as what you have going on, so I think that makes it easier for me to stick so close to home. It seems like there should be someone there at Mayo you can contact to at least get a call back directly from Dr. Goodman, if nothing else. It isn't cheap to get there and you would think he could at least do that! I don't blame you one bit for being frustrated!

I tend to have a lot of shortness of breath when I get flares, though I don't have asthma, so I think mine is purely POTS related. I have hyperPOTs, so I think that mine has to do both with blood pooling and the adrenaline dumps that come along with my sympathetic nervous system briefly taking over. I do find laying down/putting my feet up helps a lot; sometimes I need to remove myself from any sort of stimuli, and sometimes I actually need to distract myself with Netflix, etc. It's actually been awhile since I've had a really bad flare, and the worst one came a couple of years ago right before I discovered I needed my gallbladder out. I had shoulder/neck pains at the time, but mine was associated with gallstones and the inflamed gallbladder.

I wish I could help, but I have only made one trip out there. I, too, saw Dr. Goodman, and really liked him, but that was the only time, and it was about 4-5 years ago. I have called with questions since then, and have always gotten the NP. Sorry you're having so much trouble getting answers! I didn't want to make more trips out there (I'm from California), so I found a specialist closer to me. My initial testing there was super helpful, but my new neurologist has been able to pick right up where they left off. Of course, my situation isn't all that complicated, and it sounds like yours is, but maybe you can find someone closer to you, or at least someone you can get in to see. Hope you get some answers soon!

For me, getting started with exercise was extremely difficult, but after starting slow and working my way up, I am doing SO much better now. It has taken a lot of patience and perseverance, and there are still some days I have to accept that it might not happen the way I want it to, but over all, it was the best thing I could have done for myself.

Welcome! I hope you find some answers soon!

I know I've seen quite a few on here who have had luck on SSRIs. I had tried Prozac once and it was not right for me; I felt weirdly disconnected and out of it, even after I waited for a couple of weeks to give it a chance. However, I am now on a low dose of Zoloft, and that has been much better. I don't have the unwanted side effects, but it REALLY helps with the anxiety issues (since I'm hyper POTS) and I have hardly had any panic attacks since I've started. Not sure why one was better than the other for me. I also take beta blockers, so the two combined seem to be working, though my dosage is low at night, so I definitely have more tachycardia then. Not sure how to help the palpitations!