AllAboutPeace

Welcome to the forum Laura! I have had all of the symptoms you mentioned, including the weight loss and lack of sweating. The weight loss was leading up to and upon sudden onset of Pots. I didn't sweat for the first 10 months (until I started Florinef) despite the fact that I always had several layers of clothing on. I'm not sure if simply increasing low blood volume was what helped me to sweat again or if it worked indirectly - by allowing me to exercise more than 6-7 minutes at a very slow pace which then led to sweating. I have been more affected by the cold, than the heat and tended to have lower body temps when checked. To echo what others have said - finding the right doc is soo important. I'm from a small city (in Canada) too, so the docs have no experience with Pots. It's unbelievable how different it feels to come out of my EP's office as compared to my local (and former) Pots doc. I would come out from my local appt feeling like 1) I was annoying him. 2) I looked like a crazy person because the more dismissive I felt he was, the more I tried to explain and of course Pots symptoms DO sound crazy to people who don't experience it. I've recently come across the term 'heartsink' patient and I feel like that's how he saw me - not because I demanded a lot of his time, but because he didn't know what to do with me. The first time I travelled to meet my EP, she acknowledged how real and debilitating Pots can be. I didn't realize how much I needed someone to say that to me until I heard it. She has only ever had a few Pots patients, so she's not an expert, but she is willing to learn about it and do what she can to help. I would not hesitate to do some research (rateyourMD, etc) to find someone with good reviews that is close enough for you to get to. I travel four hrs to see mine and it requires planning, but it's worth it. Good doctors are out there so don't give up I agree with Chaos, the poor mans tilt is a good place to start, if you haven't done it already.

I'm not sure if this is the one you were looking for... http://forums.dinet.org/index.php?/topic/19324-the-complete-guide-to-pots-therapies/?hl=complete

Just bumping this for anyone who hasn't seen it Thanks for all the work you put into this and for sharing it, Carrie!

Has anyone mentioned Paroxysmal Supraventricular Tachycardia (PSVT) to you regarding those very high heart rates while sitting. It can hit out of nowhere and causes a sudden very high heart rate. I've had it go instantly from 70's to 180's (and higher) while sitting quietly. It doesn't go incrementally up like sinus tachy - it just makes that big jump at once. The longest I've ever experienced it was for 15 minutes, but it didn't stick at the higher rates for the entire time - it cycled up and down. My EP says it's an 'electrical' issue. I'm not sure if it fits in your case, but I thought it was worth mentioning. The heart rates can go from 60-250+ The following is a brief excerpt about symptoms: PSVT often presents with the complaints of palpitations described as a rapid heart rate. There can also be a fullness in the throat that is associated with the rapid heartbeat. Other symptoms include the following: lightheadedness, weakness and fatigue, shortness of breath, chest pressure, and syncope (passing out) may also occur. The symptoms of PSVT usually occur while the heart is beating quickly but the fatigue can persist after the heartbeat returns to normal. By its nature, PSVT is intermittent and its onset cannot be predicted. As well, once the heart starts to beat quickly, there is no way of predicting if and when it will return to normal rhythm on its own. Some patients are unaware that their heart is beating quickly and PSVT is found only when the patient presents for care and is found to have a rapid heartbeat. If you do not have symptoms or any other heart condition, PSVT may not need treatment. If you have an episode of PSVT, there are techniques you can try on your own to interrupt the fast heartbeat. One is called the Valsalva maneuver. To do this, you hold your breath and strain, as if you were trying to have a bowel movement. Another technique you can try is to cough while sitting with your upper body bent forward. Some people find that splashing ice water on the face is helpful.

Ryan, I'm soo sorry I'm tearing up just thinking about it. We had to put our 13 yr old yellow lab down a year ago. It's a heartbreaking decision to have to make too. As Becia mentioned though, we do it so they don't have to suffer. I looked at my dog one day and knew by the look in his eyes that it was time. Those paw prints on our heart stay with us forever. Allow yourself the tears for now & know that we are thinking of you. (((Hugs)))

I'm so sorry to hear that things are very bad for you right now...and I'm late to the conversation. I, too, shared many of the same symptoms you are describing, when I first got sick (sudden onset). I felt like my body was in some kind of failure. I felt like it took every ounce of energy just to beat my heart and breathe. All I could do was lay in bed. I would wake up in a choke (apnea) often and felt like my body would forget to breathe sometimes while awake. I couldn't lay flat on my back or on my left side. The laying flat would cause the breathing cessation problems and a 'tightening' type of feeling down in my throat area (just above breastbone). Laying on the left side brought discomfort, then pain if I remained. It just felt like something was just 'wrong' with my heart in that position. My echo showed some mitral valve regurgitation in that position, so I'm not sure if that's what I'm feeling (??). I never had an issue before Pots hit. I've had the issue with the swallow/locking up, too. It's happened to me while sitting at the computer - I wasn't eating or drinking anything, just felt the urge to swallow. I started to swallow, but couldn't finish it - it just locked up. I then realized that I couldn't breathe either. I forced a cough which opened things up again. I never even told my docs about that because they already looked at me like I was an alien. I found that lots of people with dysautonomia had issues with swallowing, although I haven't heard anyone else talk about the locking up until now. So, things were really bad and I was hospitalized for over a week. I would say the biggest thing that helped me out of that state was time (and lots of salt &water). The first 4-5 months were the worst. I have no idea if we are dealing with the same 'monster' or not, but I know my body forced me to stop everything and pay attention. Exercise is a tricky one when things are really bad - I wasn't able to do it all, but I moved as much as I could, when I could. The workout at the time was just brushing my teeth As Looneymom suggested, I also found it helpful to keep a daily log of my symptoms/triggers, etc, because the progress was so slow that I might not have noticed the little improvements that were soo important psychologically. IV saline was helpful for me, too. Some people have very good symptom improvement with it (albeit temporary), but even that is a good boost to get the blood back to where it needs to be. I printed out a study on Pots treatments/IV saline and took it with me on a trip to the ER and the attending doc had no problem giving it to me. I didn't have volume testing, but given how well I responded to saline, then later Florinef, the assumption is that it was low. If I could go back in time, I would have addressed volume issues much sooner. Hoping you are able to find some relief...

Welcome to the forum! I have had the same symptoms you are describing, so I also have to watch the carbs and eat smaller meals? Have you considered postprandial pooling (more blood going to your abdomen to help with digestion)? Since you get the symptoms regardless of what you eat, it may be something to look into. Sometimes an increase in heart rate can be a compensatory mechanism to get blood back to where we need it most (brain, heart). Some of us find abdominal binders to be really helpful for postprandial symptoms. They just fit snuggly around your abdomen under your clothes.

Deucykub, I had the same experience with compression hose! By the time I wrestled with them to get them on, I had zero energy to do what I was putting them on for. Lol ! I noticed in your signature that you are on a high dosage of Florinef (.3 mg). Do you mind me asking if you started out with that dosage when you were diagnosed or did you find that you needed to increase it over time? I'm taking .125 and if I attempt to go beyond that, I get headaches and I feel like I'm swollen up like a blowfish!

Cheers, right back to you I have a hard time explaining how the ab binder helps, because it's more of a feeling than it is something measurable. It boosts my BP a little; it helps me to be able to sit longer without symptoms; I can do short walks without feeling nauseous. Overall it makes me feel less cruddy {that's a scientific term, isn't it }. I have bad leg pooling, and that study indicated that there is actually more pooling in the abdominal region. I didn't realize that I had constant low level nausea until I put on the abdominal binder and it helped. I'm motivated to put it on every morning and I don't care if people can notice I'm wearing it - it's that helpful for me !

Interesting info - I didn't realize the connection with NO. I was diagnosed with iron deficiency anemia six weeks ago and have been supplementing 300mg/day since then. I was hoping for a little energy boost, but don't feel any difference at this point. I just had blood work today, so I'll be curious to see if the levels have come up at all.

I find this really helpful, too! I was surprised at how much of a difference it made as compared to just drinking slowly all day. I read about it in a study a few months ago that talked about the effectiveness of ab binders and the bolus for low blood pressure/OH. I've found them both to be helpful. I appreciate the reminder, as well

I'm sorry you are feeling so low (((hugs))) The first time I started Florinef, I saw very minor improvement in the first few weeks; no depression; in the 5th week I achieved the full benefit.(more functional/ able to drive). I stopped it for four weeks this past summer and when I restarted I was a mess (depressed and cried off/on for six weeks until the Florinef kicked in). I felt strongly that Florinef was causing the extreme mood changes, but it couldn't say for sure because I also was on a landslide backwards in terms of symptoms (so it could have been just the situation). It was strange because I didn't have the depressed mood the first time around and the second time it took two full weeks longer to see any results. So, the effects can vary even with the same person (which makes it very unpredictable). I've also found that the dosage needs to be just right because if I bump it up even a quarter of a tab, I will get headaches and heavy bloating. In my case, the benefits were obvious and clearly outweighed the downsides of being on it (and I hate being on medication! So, that's worth considering. Have you seen any improvement at all or has it all been negative?

Thanks, Jennifer! Sorry to hear it didn't work out for you - that sounds like a nasty response! Were you able to find anything else helpful? Trying new meds is soo frustrating, especially after a few paradoxical or adverse reactions. It's like taking a deep breath and throwing the dice...you'll either have a positive outcome or an interesting story to tell. I don't think any of us need another crazy/riveting story...

I'd love to have any information you can share about your experience with Wellbutrin. My EP wants to start another med and I'm thinking I'd like to try Wellbutrin instead of an SSRI. From everything I've heard, it seems like it might be a good fit for me. I have Pots/ NCS; low BP; resting bradycardia; fatigue; exercise intolerant, etc. I'm hoping it will help with energy levels. My super helpful pharmacist printed off 22 pages of info for me, but I'd like to hear from fellow Potsies, if possible. What is/was your overall experience? Has anyone used Florinef and Wellbutrin together? Has anyone experienced arrhythmias (other than tachy) with this med? Any idea which is better - SR or XL ? Any and all experience is appreciated ~ good or bad it's all good info!

What about the local pharmacies? The ones in my area have bulletin boards to post community events, etc. Other than doc offices, that is the place I've most frequented since getting sick. I hope you are able to get it started up - I'm sure it would be valuable to many! I love your quote about the angels with one wing

Yes, I've experienced this too, with body tremors. The adrenalin surges seem like that could fit - although I have certainly had surges without teeth chattering too. I do also get that cold-to-the-bone feeling at other times with or without teeth chattering. I have checked my temperature a few times and discovered a low body temp...but no goosebumps or feeling cold on the outside...weird?! The last time I had the teeth chattering/tremors was about 1/2 hr after the TTT. I had passed out (BP 60/34 HR 35) and when I think about other times its happened, it seemed to follow a nasty near syncope while sitting. So may be connected to BP drops?? The swallowing trigger is not something that I experience, so it may be a different thing all together. Wish I could be of help...I would love to have an explanation too!

Just thinking about you Sarah and hoping you're doing ok!

Hi Gemma, I'm sorry you are going through this - I know it can be scary. Chest pain has been a big issue for me as well, especially two years ago when dysautonomia hit. It looks like you have had quite extensive cardiac testing, so that sounds reassuring (even though it may not feel comforting when you're in the midst if it...) I've had several of the pains that you describe. My worst was a center of my chest pain that would last for about an hour at a time. It definitely felt like heart attack pain and I had constant pain in my back and shoulders. I had changes in my ECG's (inverted t-waves); irregular rhythms on hospital telemetry; a stress test which 'looked like' cardiomyopathy (later ruled out by echo); mitral valve regurgitation on echo; and BP crash after stress test. All of those things came on with pots and despite those new findings, they assured me I was fine. What I realized then was that I had to try to manage the pain somehow myself. I don't know what your activity level is like, but have you tried having some good rest time to see if that will help or keeping a log of symptoms/activities to figure out what your triggers are? Is blood pooling an issue for you? That can definitely contribute to the hypoperfusion in your upper extremities. I have lots of blood pooling, so keeping my feet up when sitting made a big difference in the upper back pain; and my abdominal binder helps too. I put a game on my iPod that I would lay down and play to help to distract me/wait out the pain. Chest pain is not a common symptom for me anymore. It's great that you were able to have two consults with your EP and cardiologist, so you have a quick second opinion! The echo should hopefully give you some extra peace of mind as well. Just curious, did you ever search up benzo withdrawal on this forum, or try to google dysautonomia (or Pots) & benzo withdrawal? Since you mentioned that you've heard from the benzo site that the third month can be the worst, but no one mentioned chest pain as a symptom - I wonder if a subset of people with Pots/dysautonomia do experience it as a withdrawal symptom?? I hope you are able to get some relief soon

Hi Angel, Welcome to the forum! I hope the new diagnosis & gluten free diet will help you to feel better! There have been forum members (both with and without the Celiac diagnosis) that have reported improvement with a GF diet, so I'm sure you'll get some good feedback from them. Would you mind sharing a little more about the signs you've had over the years and the nutritional deficiencies?

Ashley, I didn't realize that aldosterone affects your eyes...interesting! Visual disturbance Is one of the things that I had documented that Florinef helped me with. {I don't fully trust my memory, so I looked back } I stopped driving for the first 9 mos when I got sick as it just wasn't safe (partly due to vision; partly due to an inability to process info/react quickly; and partly because I was just too ill to be out). After 4 full weeks of Florinef, I felt comfortable driving. The visual disturbances were greatly reduced. I had other visual issues as well, but the biggest issue for me was the floaters. I would constantly think I saw bugs crawling or flying, especially peripherally. Badhbt, I'm so tempted to try gluten free, but still haven't made the leap. Glad you are seeing some benefits - please keep us posted on how it's going for you

Wow, hugs to all of you who have had to go through surgery with Pots! It's tough enough to get through everyday life... MedicGirl, I just wanted to add that my thoughts & prayers are with you too! Please keep us updated on how you're doing. I hope your puppy is toning down his energy for you and giving you lots of snuggle time

Sarah, (((Hugs))) I'm so sorry to hear that you are going through all of this Your day yesterday must have been both very terrifying and very exhausting. Irregular rhythms are the worst, especially when they hit you out of nowhere. I'm glad you have an EP that you are happy with for your appt on Tues. and I hope that you both will come up with a plan that will give you peace of mind.

Yikes! Did they do x- rays to discover this? My teeth have been soo sensitive and feeling brittle lately, but my dentist and hygienist said they can't see any problem. They gave me desensitizing paste and a desensitizing treatment and that has helped minimally, but I wonder if I should go back for x-rays. The dentist said that too many teeth are affected so he wouldn't even know where to begin.

Hi Millyaulait, I hope Florinef helps you ! It seems that it's one of those things that you don't know if it will help until you try. I kept track of how the med affected me when I first started it, so I'll attach a link to that in case you are interested. Everyone is different, but it's one experience. http://forums.dinet.org/index.php?/topic/21480-mad-love-for-florinef-5-weeks-in/?hl=%2Bmad+%2Blove+%2Bfor+%2Bflorinef Others who find it helpful have also reported that it takes awhile to notice the effects (I've heard of ranges from 3 weeks to 2 months), so that may be something to keep in mind. Welcome & keep us posted on how you get along, if you are up to it

Hi LTC Bill, The documentary can be found directly on YouTube, if you search Changes & Pots or the full title. The video is a great one to share with family and friends. My in laws watched the whole thing and came back to me to talk about it. It was great!