jenniferlynne76

Thanks, ladies, for your input. I have an appointment with my neurologist on the 23rd so I'll definitely be bringing it up then. It does make me feel better to know yours improved, Kelly, after a few weeks. I figure I'll see what the doctor says and if he wants to look at reducing either of the meds/trying something else. It's always something with this silly syndrome, isn't it?! ;-) -Jen

So I have a new symptom...lucky me! In the last week I've noticed that I am losing gobs of hair when washing it and combing it out post-shower in the evenings. Now, I have very fine hair and not much of it, so this is really concerning to me. I'm guessing it may be a side effect of one of the meds I'm on. (I take 60 mg of Mestinon 3x a day, and 2 mg of Klonopin each night before bed.) My question for all of you is, this: have any of you experienced similar hair loss symptoms? And if you have, have you been able to chalk it up to anything in particular? (Also, for what it's worth, it's not a thyroid issue as I just underwent extensive thyroid testing and everything came back well within normal limits.) Thanks, as always, for any insight any of you may be able to provide! Jen

I also use the Nuun hydration tablets. They're awesome. Much better than things like Gatorade and Powerade, which are full of chemicals and sugar. I order mine directly from Nuun or from roadrunnersports.com where they are usually cheaper, especially if you're looking to buy the variety packs. Just stay away from the ones with added vitamins and caffeine (it's not hard to do...they mark things clearly). :-) Good luck! Jen

I can't speak to your other symptoms, but I can tell you that I deal with numbness in my toes/feet and hands/arms. Especially my hands/arms with regularity (every night when I go to sleep and sometimes sporadically throughout the day). It's always best to get checked out by your doctor, but after ruling out all of the horrible things you find when you Google such symptoms (and I know...I've done it, too!) my neurologist has assured me that this is just part of the POTS/dysautonomia. One more "fun" symptom many of us share. My advice: stay off of Google (it'll scare the wits out of you), and contact your doctor. Always best to rule the scary stuff out, but I suspect you'll find it's just another "present" from POTS. Hang in there! Jen

You're definitely not alone here. While there is clearly something neurological happening to me I do find myself often wondering if its really "just" POTS. It seems like there has to be some other explanation. And what frustrates me is that without a full explanation, a full cure is darned near impossible. Hang in there and take some comfort in knowing you are not alone. -Jen

Bebe, The pain you describe is just about exactly where I experience mine. Like you I'm beginning to think it will continue to come and go at its whimsy (heck, doesn't everything with this crazy syndrome?!) And I laughed when you mentioned it couldn't be from exercise, because like you, I haven't lifted and arm/chest muscle in months. LOL I promise, if I ever figure anything out I will let you know, too! In the meantime, I've been having my acupuncturist work on the area when it bothers me most. Too soon to say if it's doing any good, but my fingers are crossed! Happy New Year, lovely! Jen

Thanks to all of you for your responses. If nothing else, somehow it helps to know I'm not alone. I may try curling up a little tighter to see if it helps. It's so strange and so frustrating, isn't it?! I have found I sleep better sitting up more but that doesn't seem to help my arms as much as it helps the other weird nighttime/sleep symptoms like the constant waking. If anyone has other ideas or insights I'm all ears. And hang in there everyone. At least we're in this together. -Jen

Alex, Thanks for sharing your thoughts on this. My arms started falling asleep long before I was having sleep problems actually...though it was one of the symptoms that kicked them off, and that started happening almost two months before I started trying any benzo. It just got to the point where I couldn't sleep at all: between the arms falling asleep, the adrenaline rushes, the inability to both fall and stay asleep... I had strung so many days together of 2 to 3 hours sleep maximum a night that I could barely function. That's when we finally decided to give them a try. If I really thought weaning myself off the 2 mg would improve my sleep I'd do it in a heart beat. But long before trying the Klonopin I tried everything: tea, meditation, warm showers, relaxation, massage. Nothing would work. *sigh* Like you I tried the over the counter stuff and melatonin, too...also to no avail. Frustrating, isn't it? Pumpkin, I'm exactly the same way lately. I want to curl up on my side so badly and have even done the thing where I wrap my arm around a pillow, but maybe I should trying clutching it to my chest instead? Certainly worth a shot! Hope we can both find something that works soon! -Jen

Mama, Thanks so much for your response. It's amazing to me how helpful it is just to know I'm not alone. Sometimes with this silly thing you really do begin to wonder what you're imagining and what's really there! I have a feeling we'll both be searching for answers on this one for a very long time. But it helps to know it's something more common than I maybe originally thought and that it's just another thing I can chalk up to dysautonomia! All the best to you and yours, Jen

Hi all, I'm still plagued by the fact that my arm(s) fall asleep throughout the night while doing my best to sleep. And sadly, since the Klonopin doesn't seem to be working quite as well as it intially was, I am noticing this even more. Even when I'm not laying on my side, and am on my back, they will fall asleep. The best position I've found so far is on my back, with a pillow under each arm to lift them slightly, and I have to keep each arm completely straight/down. If I lift them up at all (like to heart level or above) forget it...they will fall asleep immediately. I know there are others of you out there who experience similar issues. I'm interested to hear what you've found works the best for you/helps you get the most comfortable night's rest. I'm about at my wits end at the moment. I've tried a body wedge, I've tried stacking pillows ... is it worth trying to lift the head of the bed? I am I missing something else? Thanks as always for your advice, everyone! Jen Current meds: Mestinon 60mg (3x daily); Klonopin 2mg (1x daily at bedtime)

I thought I'd found my miracle drug in Klonopin. For about 2 weeks I took 2mg a half hour to one hour before bedtime and finally slept (after two months of severe insomnia) I feel your pain as sleep issues are the worst side effect of my dysautonomia. In the last week the klonopin isn't working as well. I'm getting less solid hours of sleep from it up front and my arms have begun falling asleep something horrible each night again. I have a sleep study scheduled for January 13 and really hope we can find some combo of meds that will help me get some rest long term. Has anyone else had experience with Klonopin becoming less effective so soon after starting it? I would still encourage you to give it a try as its worked better for me than everything else I've tired. And it does seem to be one of the few drugs most of us have had at least some success with. Best of luck to you. I know how super frustrating it can be! -Jen

Hi all, I'm very curious to know if any of you have ever experienced pain on one side of your rib cage, sort of leading up into the under arm area. My pain has been there in some form since July (in fact, it was one of the first "symptoms" I had), and it was originally diagnosed as chostochondritis, which my neurologist questions. He seems to think the pain may well be related to the dysautonomia, as many patients have inexplicable pains in their limbs and such. I can go days without feeling anything there and then all of a sudden, just the worst pain imaginable. It hurts to the touch, so it doesn't feel "muscular" per se -- like caused by a certain movement (though that doesn't always help either). I've had CT scans, xrays, massotherapy...nothing seems to help, which makes me think my neurologist is right and this is probably just one more of those things. I have an acupuncture appointment this morning and plan to mention it to my practitioner to see if there's anything she can do to help ease the discomfort. So...am I the only one out there with this weird symptom or do I have company in this area, too? :-) -Jen

I think it truly has less to do with dysautonomia and more to do with the food allergies some folks have. I was just tested last week for every food allergy under the sun and they all came back negative. Not even a blip to be found. My doctor has told me the biggest thing for dysautonomic patients is to avoid heavy carbohydrates and sugary foods. Those do NOT do well with our condition. Otherwise, unless you have an egg or gluten allergy it shouldn't be a problem. But, as with all things, YMMV. Good luck! -Jen

Hi Abby, One of the first things my neurologist assured me of was that neck and shoulder pain are very common in POTS patients (it's something I've suffered from for a long while). I assure you, you're not imagining this! -Jen

Southbel, I experienced the same thing you did. Even after we worked with beta blockers and then the Mestinon I'm on now to get things some what regulated, I would have these massive adrenaline surges that would last anywhere from 2 to 9 hours! (Those were the worst!) Initially, we disovered that the combination of Ativan and the beta blocker did the trick, but then then Ativan stopped working. For almost two months I went through what you describe exactly (and mine almost always happen at night, which means I can't sleep). We tried everything.... I did a lot of research on here and talked to a lot of folks, including my neurologist and eventually we decided to give Klonopin a try. It's been a true godsend and can stop my adrenaline surges in their tracks. It also helps me sleep. For the last two weeks I've gotten a minimum of six solid hours each night. Please consider talking with your doctor about trying some of the Benzos (and I'd start with Klonopin...Ativan sort of worked, Valium did nothing, and Restoril sort of helped as well..). I honestly don't know what I'd be doing without the Klonopin. Best of luck to you and please keep us posted; I hope you feel better soon! -Jen

Kitt, I didn't struggle horribly with energy issues from the outset (which always baffled me). But my sleep was HORRIBLE. What I've found is that because everything is working so much better now, especially digestion and muscle function, I don't feel as run down. If it makes sense, before I was taking the Mestinon I always felt like everything was taking so much effort. Like because my body wasn't working right everything took twice as much effort. Now, however, things are running along much more smoothly and, as a result, I feel more focused. Now, the other lifesaver for me has been Klonopin. Even once I'd increased the dosage of the Mestinon I still couldn't sleep for you-know-what. And we tried everything. Finally we gave Klonopin a whirl. For some reason, taking the 60 mg of Mestionon 3x a day and 2 mg of Klonopin at night right before bed (I take 1 mg 30 minutes before I go to sleep and 1 mg right as I crawl into bed), it's like I'm almost back to my old self. (Well, as close as someone with dysautonomia can be, of course!) I usually go to bed at 9:30 p.m. and I will wake up once during the night (sometimes at 2 a.m. other times at 4 a.m.) and then I fall back to sleep until my alarm goes off at 6 a.m. I wake refreshed, energized. Again, no side effects. For me, and obviously this is just my personal experience...but for me, this combination has been a god-send. I really hope that over time you find it brings you some relief. And if there's anything else I can answer for you, please let me know. -Jen

So I'm a Mestinon success story. I've been on it for just over a month now and my neurologist titrated me up to 60 mg 3x a day over the course of the first three weeks. It has significantly improved my digestive issues, helped my neuropathy and regulated my heart rate and, best of all, I've had no side effects. As I was increasing dosage is have a little digestive upset for a day or two, but then things would adjust and I'd have no problems at all. I take mine with meals, per my neurologist's instructions and really consider it a miracle drug. My doctor did say it seems to help those with less severe forms of dysautonomia and also seems to be most effective for those with sympathetic nervous system issues, so this may factor into people's experiences. But, speaking for myself, I could not be happier.

Thanks, Chaos and Mom for your thoughts on this. I suspected that was likely the case. It just seems so funny to me that it's so much more pronounced with potatoes! I've always suffered from a mild case of reactive hypoglycemia so I suppose I shouldn't be too surprised that the dysautonomia has simply brought my issues out that much more. I suspect it's time to face the music and start thinking about some serious dietary changes, especially now that my meds seems to have stabilized things and I'm actually getting some regular sleep again.

I suffer from the same issue. I have found that acupuncture is helping some, as does regular massage to help with circulation. One of the things my acupuncturist has suggested that also helps is soaking my feet in a warm tub of salt water and powdered ginger each night before bed. It helps improve circulation and warm the area. And as soon as I take my feet out of the bath (I soak them for about 15 minutes) I dry them and put on a pair of fluffy warm socks.

So I have a weird one for you all. I try to eat fairly balanced meals of fat, protein and carbs. And the only time I've ever noticed feeling particularly icky after a meal (dizzy, on edge, etc.) is when I've eaten too much sugar/too many refined carbs. However, the last two times I've eaten potatoes (once in the form of a baked potato and the other in the form of mashed potatoes), about 2+ hours after my meal I have had the worst adrenal response. Does anybody know if there's a particular substance in potatoes that might cause this? I know there's a good deal of potassium in them, but beyond this I'm baffled. What is even stranger is that I've been able to eat french fries with no problem! (Maybe b/c the oil helps slow absorption or something?) I suppose this could all be in my head, but it seems awfully coincidental, so I thought it was worth reaching out to the rest of you to see if you'd ever experienced anything similar. Thanks as always for your thoughts, Jen

Good for you, Joann, sticking up for yourself! That is the best way I've found to be taken seriously: be the squeaky wheel. I'm certain that if you poke around enough they will be able to get you in with the appropriate people. I would also encourage you to keep an open mind if they suggest someone other than the person you initially planned to see. I say this because the neurologist I was to originally see was booked out by two months, and out of desperation I went with someone I'd never heard of. It turned out to be the best decision of my life. As for the Intercontinental, while convenient, there are other, equally convenient places to stay within the area that will cost you a fraction of the price. All of the hotels in the area on are a shuttle bus line, and the Clinic is awesome about helping you find the right place to stay. Of course, if you need a local's perspective, don't hesitate to let me know that either. :-)

This was especially interesting to me as I was surprised to learn that Mestinon, which I'm taking for dysautonomia, is not only used to treat Gulf War syndrome, but was also apparently given to soldiers during the war as a means of protecting them from "some" chemical nerve agent.

Good call, Peregrine! Thanks so much for that! :-)

I live in Cleveland and was diagnosed at the Clinic last month. You will be in VERY good hands. One visit was all it took for me to get a diagnosis and I felt incredibly cared for and supported the entire way. I think you will be pleased with the response you get from any doctor you see while there, but would make sure the people helping you schedule your appointments understand that you suffer from dysautonomia. That way they will be making sure you are placed with specialists who not only understand your issues, but also are familiar with other practitioners who will be able to help you. As far as cardiologists, I had great experience with Dr. Jaeger who is director of the syncope clinic and did my tilt table test. And, like you, Joann, I don't have an extreme case: I've never even come close to fainting, I don't often have episodes of tachycardia, I can shower and live my day-to-day life virtually symptom free. If you would like to send me a message/share more details about your specific case and what you feel you need to be tested for, I would be happy to offer additional specialist recommendations. Having lived here for so long I'm quite familiar with the medical community and know others who may be able to help you as well. Best of luck, Jen

Thanks for sharing this. What's funny is I've always avoided any drink with this substance in it merely because I found the thought of vegetable oil in a drink repulsive. Who knew it was that and so much more! Ick.