jenniferlynne76

I love this! Thanks for sharing! :-) -Jen

Thanks everyone for weighing in. I really am SO lucky I went in when I did and didn't just chalk it up to a POTS flare. They ran the d-dimer which came back positive, then did the CT and there it was: clear as day. I go back to the neurologist Wednesday. He is most concerned right now with me staying as active as possible to prevent additional pooling (since that could have caused the clots). But he also wants me resting/no real work for st least two weeks. So for the time being we are upping my mestinon by one dose (from 3x a day to 4) and he wants me on the treadmill for 5-10 minutes at a time working back up to 10k steps a day. I'm sure he'll have more to talk through with me when I see him Wednesday. Went for my first Coumadin check this morning and everything is great. Holding steady at 2.7. So I will go back on Monday morning and we will go from there. I'm committed to using the spirometer, walking, taking meds, etc. so hopefully I will continue to feel better and we will have even more answers soon. Thanks again! Jen

Hi all, Finally back home after a five day hospital stay. My husband took me to the ER on Friday night after what I thought was just a really bad POTS flare, marked by chest pain and shortness of breath, turned out to be one heck of a pulmonary embolism. I am VERY lucky I got there when I did. It was later discovered that I also have a clot in my left leg. Now, since I've been on birth control for 20 years they are chalking all of this up to use of hormonal contraceptives for so long. I do wonder through, any of you out there with dysautonomia also have a clotting disorder or similar experience? I am now on Coumadin and will be following up with my neurologist who is thinking there very well may be some connection here, as I have always been really healthy until this last six months or so, and now I have a POTS diagnosis AND this. No more birth control pills for me, so I have a follow up appointment in a few weeks for a pap with my OB-GYN and think I will ask about tubal ligation at the same time. My neurologist has agreed with my husband's and my decision not to have children (if we change our minds there is always adoption) and now that hormonal pills are off the table, I think it is time. Plus, who knows what else we may find as we begin exploring clotting issues, etc.? Anyone out there have experience with this? The pulmonary embolisms, DVTs, or decision to go the tubal ligation route? Thanks in advance, Jen

I can't thank you enough for giving me the encouragement to do this. You are right: I am concerned because our disability is less obvious than others' and I am afraid of the nasty things I know people will say. That said, it will make my life SO much easier/safer. And I am convinced that, at least twice now, the long cold walks have added to a couple of flare ups I've experienced. As usual, I'm SO thankful to have the support of all of you here. Thank you, thank you! -Jen

So I'm thinking about breaking down and asking my doctor for a script for a handicap placard for my car. The parking garage where I work is not only very full this time of year, but it is three stories tall, a long walk from the building and has no elevators. Instead, they've just cordoned off most of the first floor nearest the building for handicap parking spaces. I hadn't even considered this before, but lately I'm having a hard time walking long distances (especially when they involve stairs) and I'm out of breath, exhausted and my HR is through the roof by the time I get to the building/my car. The walk never bothered me before I was diagnosed with POTS but lately it's been torture. Has anyone else run into a similar situation? Has your doctor been supportive of such a request? I admit I feel badly even asking because I feel like there are people out there who are "sicker" than me, but a recent experience caused such a flare it really got me thinking about how "unfriendly" the structure is to those with less "obvious" disabilities. It seems like this is the best answer at this time... Any thoughts or experience with this kind of thing would be appreciated. Thanks! Jen

Welcome to my world! This is a very common symptom of dysautonomia. My answer is also to dress in layers. I'm constantly stripping down and the bundling back up. It's almost become comical to me at times... I can't control the cold or overly hot feelings but at least I know how to quickly address them! :-)

We don't know for sure, but my electrocardio physiologist and neurologist believe it was caused by a virus. I developed a salivary gland infection (very weird!) Labor Day weekend and a week later had horrible stomach problems. A week later, I was sent for a gastro consult and that day wound up in the ER with high blood pressure and tachycardia...then all the other symptoms started showing up: insomnia, neuropathy, odd aches and pains, adrenaline rushes, etc. I had an endoscopy which came back clean, an electrocardiogram and several EKGs that came back clean, tons of blood tests via a rheumatologist--also all clean. An MRI that came back clean. Finally saw a neurologist and was diagnosed. Never any symptoms prior to the onset of this virus. So while we will never know for sure what caused this, I think that virus is a pretty safe bet.

I was never on benzos prior to POTS either (I'm on 2mg of Klonopin per night), and it has helped my symptoms immensely. No more adrenaline rushes and my insomnia is gone. I believe the extra/normal sleep has also helped my body to finally begin healing, which has improved my neuropathy in conjunction with acupuncture and supplements. I know this is a touchy subject, but my neurologist has no concerns about me being on the Klonopin for as long as necessary, so long as it's helping me to live a normal life. While I don't love the idea of being on benzos because they are so polarizing (opinion wise) I do have faith in my doctor and can't deny that the Klonopin has helped give me my life back.

All, My neurologist at the clinic took a thorough medical history and then scheduled me for blood work, a chest CT (because I has a lot of chest/rib pain for months) and scheduled a tilt table test at the syncope clinic (syncope is another word for fainting, btw...) At 41 minutes into the 45 minute test my BP dropped from 112/72 to 72/35. Needless to say I almost passed out and they put me down. After reading the tilt table test result and examining my history and blood work results (I also had previously had an MRI) my doc updated me every day for almost four days...including over a weekend...until he had a firm diagnosis of POTS. At that point he started me on Mestinon, which I worked up to taking 3x a day (60mg each time). I also take 2mg of Klonopin a night due to severe insomnia. (We tried seven other drugs and a sleep consult before we found something that worked... but he NEVER gave up on me.) My doc also worked with me to get me into an acupuncturist for my neuropathy (both arms/hands/feet) and was supportive of me working with one of the Clinic's holistic practitioners to get me started on other vitamins that might help...and boy have they ever. Especially MetanX (which is prescription only) and Alpha Lipolic Acid. I also take fish oil, vitamin d, and a curcumin supplement. I began seeing a new chiropractor recently too which is helping with the neck and rib pain. In short, my doc is my hero. He quickly helped me identify a proper diagnosis, helped me find the right combo of meds and, best of all, treats me like an individual. Am I cured? No. Do I feel 90% better (or more) than I did 5 months ago when all of this started? You bet! And, best of all, I feel like I have an ally in this fight. Truly...best of luck to you in finding the right person to help you out. If you are persistent and listen to your instincts I believe it will happen. All the best, Jen

Wishing and Hoping, I'm sorry you've had such a disappointing experience. The clinic has been a life saver for me. I started with neurology then went on to syncope and had a diagnosis in less than four days. Over the course of the following month we tweaked my meds and treatment plan and I'm continuing to do well. Not cured of course, but nearly normal which is a huge blessing for me. I hope you won't give up and that they can help you. -Jen

I also didn't find the salt loading helpful. But about one week into taking 60mg Mestinon 3x daily (it took me three weeks to get there, imcreasing by one pill per week) I noticed pronounced improvement in a number of my symptoms. I hope you have a similar experience! -Jen

Thanks all. Yeah. No history of bed wetting at all. I'm inclined to keep an eye on it for now, assuming it was just because I was in such a deep sleep and admittedly don't have as strong a control over my bladder since vein diagnosed with dysautonomia. If it happens again ill be sure to reach out to my neurologist. Thanks again for the reassurances. Definitively a humiliating experience for me. *blush*

Thanks all. Yeah. No history of bed wetting at all. I'm inclined to keep an eye on it for now, assuming it was just because I was in such a deep sleep and admittedly don't have as strong a control over my bladder since vein diagnosed with dysautonomia. If it happens again ill be sure to reach out to my neurologist. Thanks again for the reassurances. Definitively a humiliating experience for me. *blush*

So last night was a new and disturbing one for me. I was in a very deep sleep (as I often am--thank you Klonopin), and was dreaming deeply as well. At one point in the dream, I was in a bathroom, on the toilet, having to pee rather badly. The next thing I know, I am waking, and my first thought was, "My, I really need to go to the bathroom badly NOW!" But that same moment I realized I was laying in a puddle and I'd wet the bed! Alarming to say the least as this kind of thing has never happened to me. Have any of you had experience with such an episode? Thanks, Jen

Definitely talk with your personal doc/nurse about this. I take 2mg of Klonopin at bedtime every night and never feel groggy the next day. Instead it just suppresses my adrenal surges and ensures me a good night's rest.

I take 60mg three times a day and would think you'd definitely have to take it more than once a day to notice any effects from it, especially as its a very short acting drug.

Bebe, That's exactly what mine feel like, too. Pretty much always at night, always internal, and through it all my vitals stay normal. Weird and awful feeling all at the same time. -Jen

Cmac, I had horrible stomach pain when eating that would reach up under my ribs and into my shoulders. The process of digestion was excruciating. Other times, I would experience a dumping of sorts...like my body wasn't properly digesting food and I'd find myself on the toilet quickly. And it was clear the food in my "stool" was not digested, as there were pieces of whole food in it. Since I started the full dose of Mestinon I have had no trouble at all. I can eat comfortably and my digestion seems as normal as ever. That in itself has been the greatest gift the drug has given to me. If you have other questions please key me know. Hope this was helpful.. -Jen

Abby, I'm also on Mestinon (60mg 3x a day) to help keep the blood pumping through my system harder. Helps with the pooling and has really all but solved my digestive issues. The Mestinon helped this jittery feeling you asked about for sure...and the Klonopin has completely resolved it. Been on it for a month and haven't experienced a single return episode (fingers crossed). What are you currently on?

Welcome to POTS. You are definitely not the only one who gets this. I experienced it really severely right after onset and its gotten better as we've used medication to get my symptoms under control. I wish I knew exactly what caused the issue (perhaps someone else here can provide some insight). But please know you are not alone. This is extremely common among POTS patients. In my case pooling blood in my legs/feet can cause it, but it also happens at random, and used to happen most often at night. Since I started taking Klonopin before bed its all but stopped, however. This makes me think there's some type of adrenal response involved, as well. Good luck to you! Jen

The left side of my body is worse than my right, as well. My left rib, chest, shoulder, and especially knee. Not sure if this just coincidence or not, but it's been this way from the beginning. I don't think, however, that slamming your knee in/on the door would even come close to triggering POTS. Usually there's some type of severe trauma, illness, etc. at the root of this tricky syndrome. My neurologist informed me on my last visit that it's very common for people to experience severe limb pain on one side of the body (often the dominant side, but not always), and that it can be as bad as what you're describing about getting into the shower. Once again, you are not alone, my friend!

Wow! I'm so fascinated by this! Who knew dysautonomia caused hair loss as well?! It's crazy, but once again, I feel better knowing I'm not alone. I think I may start taking some biotin depending on what my doc says in a couple weeks. Can't see where it would hurt, but it never hurts to be sure. P.S. I am having to unclog the shower every day too! Yikes!

Peregrine, Glad to hear you are able to discontinue it. That's actually one of the questions I have for my neurologist when I go back in a couple weeks. At what point can we begin to taper off and see how I do? Because I've been wondering: do I feel better because of the Mestinon or do I feel better just because my body is finally healing and adjusting (since I don't have an awful case to begin with). Hmmmm... For example, I notice no difference in how I feel whether I eat a lot of salt or not. Or whether or use the electrolyte drinks or not. I found I'm able to drink alcohol in small amounts and coffee with no problems either. So again: med or me? How do we know what's really making the difference here? I'm not having any side effects (that I'm aware of) from being on it, but I hate taking anything that isn't necessary. So my goal is ultimately to get back to the point where I'm on nothing but vitamins again. Some day! :-) -Jen

Mine also feels very dry. Heck everything feels dry...and even more so than usual at this time of year (which I expect tosome degree since I live in a cold climate where we're dealing with dry heat). I'm really hoping it's not the Klonopin since the stuff has been a godsend to me...I've actually slept decently almost every night since going on it (as it controls my adrenaline surges). Really makes me wonder if it's not a general dysautonomia thing!

I so wish my hair were thick! I have always had very fine hair and very little of it. So I really worry that this is going to become noticeable sooner rather than later. I have begun B and D vitamins in the last month on the advice of my holistic doctor, who's working with my neurologist and his findings. I've noticed the neuropathy got a bit better when I started the b vitamin (called MetanX). But nothing seems to he helping my poor hair...yet!