Gena

Everyone else gave great advice so I can't really add much except to say your in my thoughts and prayers. I assume mom is driving you, so I'm sure you'll be in excellent hands! Maybe you can bring along some books on audio to keep you entertained as well. I hope everything goes smoothly for you Em and that you return safely without any complications. Hugs, Gena

Hi Julie, I'm so sorry you're going through such a rough time. I am having a lot of autonomic storms lately too, so I know how you feel. And dinner is always hard to digest when I'm in a POTS hole. Seems like it takes forever to finally get out of my stomach. Have you ever been dx'd or tested for celiac? Do you notice a flare up of symptoms after you eat something with wheat or grains in it? Just curious, b/c gluten can wreak havoc on your body if you can't tolerate it. As far as the twitching goes, I have that on and off for years even before I had POTS. It was at its height before I was dx'd with celiac. After going gluten free the twitching subsided a lot but I do get spells of it from time to time. It can be my face, my eyelid, my foot, you name it. There's not a place on my body that hasn't had a twitching spell!! I never wanted to be on any meds, but I do take Klonopin from time to time. Like you, I was afraid I'd depend on it too much also. However, I find that I take it only when my symptoms are acting up, which can be for a few days, weeks or maybe even a few months at a time. However, I have easily been able to go off of it for months at a time too, when my body is feeling better. I mostly take it right before bed and it does help. I hope your symtpoms get better soon. I'm sending hugs and some calming tea your way. Hang in there girl. Gena

I have been near syncope only a few times when my BP is really really low. My question to everyone who faints or comes close, do you get tachycardia of any sort first? When I have tbad achycardia I start getting queasy and dizzy and feel very faint. Sometimes it's the opposite though.... when I'm sleeping and my BP gets very low and I have bradycardia, I feel like I stop breathing and I start to pass out and I jolt awake, which gets my heart going 90 miles an hour! Just curious what everyone experiences with their heart before they grey out. Thanks! Gena

Katie, I am so sorry you're going through a rough time. I know it feels awful not to have some control and management over your symptoms. I would definitely get some tests done neurologically and cardiology, even ones you may have had in the past that were normal. Never hurts to test again, especially if you're symptoms have changed or gotten worse. I agree with Ernie, if you can get your doc to write a standing order fo IV saline solution this might help your body recover from this slump. I've never tried it, but I'm getting ready to ask my doctor for an order. I've fallen back into a hole to and I'd been doing quite well for so long. I know mine was stress induced, but now can't seem to recover even after the stress is gone. One other item to consider is compression hose. I didn't see that mentioned in your previous post. I'm going to order some this week myself. Hang in there. Even if it's by a thread. Believe that you will improve. I found this quote that I really like... How wonderful it is that nobody need wait a single moment before starting to improve the world. Anne Frank Hugs, gena

Becky, I'm sending you thoughts of inner strength, courage and peace. I hope all goes well and that you find a way to say and do all the right things. Best wishes. Gena

Hey Tea, Just wanted to say hi and that I miss your wonderful posts, but I completely understand about conserving energy points. I've been in the same boat. I hope your progress continues on and that you don't over do it. I was feeling awesome and barely had any symptoms for several months and then BAM!! I started getting a heavy workload at the office and the stress finally got to me. So I'm just telling you in a not so subtle way to TAKE CARE OF YOURSELF FIRST!! Hugs, Gena

Does anyone know when this show will air a repeat. I'd definitely like to record it! thanks Gena

It seems a lot of us experience palpitations of some sort and I know this topic has come up before but I'd like to know this... What symptoms or feelings do you actually experience when you get arrhythmias? Fluttering in the chest, feeling like your heart dropped, a quick a sinking feeling, shortness of breath, indigestion, pain of any type? And what triggers them? Are they triggered by deep breaths, yawning, sneezing, crying, eating too much, or do they mostly appear when you're feeling anxious? I'd be curious to get everyone's input. Thanks, Gena

Thanks Dizzy, I think I should too, it's just that I never know when they're going to happen and everytime I've had a monitor on of course I only experience tachy or bradycardia and no palpitations. So I'll look into it further though. Maybe I can get a monitor now, since I've been having them a lot lately. gena

I have never been able to actually capture my arrythmias on a holter monitor, so I don't know if mine are totally benign or not....but I definitely go through spells of them. I have been having them pretty bad the last few months. I'm under a lot of stress though and that always seems to make them worse. Does anyone find that when their heart gets out of rhythm that you suddenly feel dizzy and weird, kind of like you're going to pass out? Most of my missed or extra beats are just a scary in the chest feeling, but I've had some runs that made me feel like I wasn't going to make it. Does anyone also get chest pains with the arrythmias? I never know when I should consider going to the ER about these or not. Any guideance or suggestions on this? I called an ambulance once for them, but things had settled back down by the time they got to my house. Also, does anyone notice that after arrythmias that their heart takes off to the races (i.e., tachycardia) for a few minutes and then settles back down? Would this be considered IST? Mine does that alot, almost like it's trying to find the right rhythm again. I try not to panic about it, but some days are easier than others!! Thanks, Gena

Have you tried putting Celtic sea salt in some bottled water and drinking it each morning before you start your day? I have gotten to where I can drink pretty salty water and actually enjoy it! I try to do this once in the a.m. and again in the afternoon/early evening. Sometimes I add it to my apple juice or gatorade as well. I have also discovered miso soup from the health food store. It's high in sodium and I cook it up with a little veggies, onions and almond butter. Sounds weird, I know, but that's one of the recipes suggested on the small tub that it comes in. It's actually very tasty! And for extra salt I add some dulse seaweed in it. Again, weird sounding but I love the taste and it's a great, nutritious soup to have on a cold day, and loaded with sodium. Salty nuts or crackers are also an option. Good luck! Gena

My BP gets extremely low while I sleep so when I wake up to go to the bathroom I have to use a wheel chair to get there (I don't use one during the day). It helps offset any severe tachy and dizziness I get. Even with the wheel chair I still get symptoms and it usually takes about an hour before they settle down and I can go back to sleep again. I hate having a small bladder b/c it really disrupts my sleep. Evie--I sometimes dream that I'm fainting/passing out too, and in actuality when that happens my bp and hr are very very low and it causes me to jump awake and then my heart goes off to the races. Night time just plain ***** for me, especially when I'm in a POTs hole! Gena

This is interesting. I went to their links page and it had some other useful links as well. One of the links is great for really differentiating POTS, orthostatic Hypotension, dysautonomia, etc. from each other. Great info Steph. Thanks. Gena

I tried cardizem, a calcium channel blocker for about a week and it lowered my BP too much. Just felt really drugged and woozy if I tried to wake up in the night to use the bathroom and super tired in the morning when I had to get up for work. I stopped taking because of that. I don't remember if it helped with the arrythmias though. I still get them all the time. Scary and painful, but learning to live with them! Gena

I've taken this and it definitely helps with sleeping, but I have to use small doses, otherwise I feel really drugged. I don't notice any negative side affects from a POTs perspective. I would not advise taking it on a long term basis though.

Glad to hear everything is going well as can be expected. Get plenty of rest and I'm sending lots of hugs, prayers and healing energy your way. Hope to see you back on the board soon. Hugs, Gena

Tell Deb that with such a wonderful supportive husband, her good sense of humor and amazing courage I know she will make it through this and put these episodes to rest. What a strange and scary time she has been through. I hope, for her sake, the dx is correct and that she can work through this with some counseling. She's a funny and smart woman. We'll miss her on the board here, but I hope she'll be back soon. In the mean time, send her hugs for me. Gena

Your stomach problems could easily just be part of your anxiety and/or dysautonomia, or they could be caused by celiac or any number of other factors. Constipation, gas and diarrhea are common symptoms of so many things that it's hard to say. You should speak to your doctor about this. With that said, I have celiac and had all of the same digestive problems you speak of before I was finally dx'd with it about 5 years ago. When you speak to your doctor, you can ask him/her about getting tested for celiac....it's a simple blood test. Celiac or gluten intolerance does seem to be fairly common among those of us with dysautonomia. The best thing to do is speak with a physician for some further testing and some peace of mind. Beware though, the first doc I saw when I was going through the diagnosis phase refused to do any tests and told me I just had IBS (irritable bowel) and said I should eat more high fiber grains - this of course only made things worse since all the grains I was eating were high in gluten. The next doc finally figured it out. Hope you find relief soon, as I know it can be painful and unpleasant! Gena

I hope things get better for you real soon Julie. Klonopin is the only drug I take and I only take a 1/2 of a .25 mg wafer (not the pill) before bed. It's great because it has no taste and dissolves under your tongue. It does help me on most nights, although sometimes I wake up and wind up having to take the other half. I try not to use it every night....just when I'm going through a rough spell, like now. Well, hang in there and I hope it helps you. Gena

HI Dizzy, et al, I just wanted to say I'm right there with you! Very low BP, brady, then tachy, chest pain, dizzy and incredible headache tonight. Wish I could sleep through the night. My body could really use it. Well, I'm hoping the sandman will visit us this week and give us all some much needed rest and will put our symptoms at bay for a while. I am ready to get out of this hole!! Hugs, Gena

Hey Emily, I'm wishing you the best darned 30th birthday ever!! Thirtly is nothing to fret about. It's all about attitude baby!! Well, I'm sending you a yummy gluten free cake with only 1 candle on it, so you don't get tired blowing out 30 of them! So make wish and I hope you get back to sleep with sweet dreams. P.S. It looks like we have a lot of night owls up tonight/ this morning. Hugs, Gena

Many hugs and wishes for a speedy recovery. Here's me sending her healing thoughts... Take care, Gena

me too, but haven't had them in a long time. knock on wood! Gena

I agree with Earth Mother. I keep quality protein bars (that are low in sugar) or salty nuts with me all the time. If I eat a large meal and then try to stand on my feet for a long time or do something physical, I just don't have enough blood volume to do both. I do much better eating small meals and just kind of snacking lightly throughout the day (I limit refined carbs and sugars). I've been gaining weight by making high calorie, high protein smoothies in the morning. They add about an extra 400 calories or more to my diet each day. It's definitely helped me gain a few pounds. Best wishes, Gena

Yes, I've been waiting for Chad's reply too, so I'm glad you're following up on this. Although I am not expecting anything miraculous! Hope you have a good day. Gena