Deb

Jess and Lisa, I've been seen by Dr. Phillips! He is so gentle and kind. He actually held my hand while he was talking to me. He isn't new, though. He's been there quite a while. He heads the neuro lab which is where I first met him. I really like him. I've heard someone comment that he wasn't very friendly, but I found him to be the opposite. He's quiet and soft-spoken, and definetly knowledgeable. Jessica, I work at the Medical Center, so I could even meet you there. Send me an email and let me know when you'll be coming, and we can make plans to meet!

I think you should ask your Dr. about it, too. It probably isn't anything to worry about, but it's better to know for sure. I get that too, but my cardiologist said that it's the sympathetic nervous system fighting to control my blood pressure. Hopefully your's is as simple as that.

Hey Jessica, I live in Charlottesville. Well, 23 miles away. Who is the doctor you are going to see? And, maybe we could see each other while you are here?

Dear god, Julie, my heart goes out to you. I don't know how you are coping with what you've described. I don't know anything about most of what you wrote except for the walking part. When the blood pools in my legs, I can't walk either. I twist my ankles all the time, because I also push myself. My legs feel like they are dragging, because I also trip a lot. I don't know why it only happens some times. I have had weeks between these episodes, but they have lasted for days at a time. I really have only recently recognized what was going on. I was having a hard time with anxiety, and those symptoms and the side-effects of the medications masked so much. Now I just try to ride them out, and try to be as active as I can stand. I sure hope you start feeling better real soon. I would try to see another doctor for a second opinion, but I don't know which specialty to even suggest. If you have a primary care doctor, why don't you start there by asking for a recommendation? Good luck, and I'll be thinking of you.

I may as well be more specific, I have the pain in my groin, down the inside of my thigh, behind the knee, in the calf, in my ankle, and in my big toe. It's only on the inside of my legs and feet though. The swelling is in my thighs, and behind my right knee. I haven't seen or felt it anywhere else, but that's just as of today! Isn't it ODD how the symptoms keep coming? I used to only have the pain in my big toe and behind my knees. The swelling is fairly new. I'm afraid to ask, but I wonder if it means the nerves are worse. I know the pooling is worse. I wrote about two months ago that I didn't see any pooling. Now I not only see it but I feel it when it happens. It's the strangest sensation. At least there is a warning so that I can get my legs up. Putting my legs up is the only way I've found to relieve it. I started back on the midodrine, and it has helped to prevent the pain most of the time. Has anyone found anything else that helps with the pain?

I have that, too. I call that area the backs of my knees. It hurts like the dickens when it happens. I thought it was from the blood pooling.

This past week hasn't been very good, but today is much better. I've been off midodrine for three weeks, and had to take it today. Had my parents up for dinner. Cooked out, and then took a nice long walk around our property. Only a bit tired. Was able to do a little cleaning, too, before they came. I realized it's been four weeks since I cleaned the kitchen floor. Oh Well!! Hope all of you enjoyed the long weekend.

Thanks for the info Roy. I have the breathing problem at differnet times, too, with the exception of when I am lying down. My asthma is usually worse when I am lying down, so the pooling really does make sense. I have an appt. with an asthma specialist next week, and I'm going to ask about the possibility of blood pooling around my diaphram. Like Paige wrote earlier, I also get out of breath just talking. I start to stutter.

Hey Julie, I don't think anyone thought you were refering to this discussion as gossip. People can be so cruel. I know what you mean about being thin and then heavy, too. People really do treat you differently. Everyone is forever saying how thin I am, and people who don't even know me say things like - "You must exercise a lot and know how to eat right". Like only thin people exercise and know about nutrition! Sometimes I want to shake them and tell them how hard it is to make yourself eat when your stomache hurts, and everything tastes the same, and it takes so much energy to just sit at the table. I told that to a couple of close freinds at work, and to my surprise they said, "Gee, I wish I had that illness."

I use Flonase, too, and it works great. Before I was dx I use prescription Allegra-D. I have terrible hay fever, but since the dx of POTS, that seems to have alleviated some. Or maybe the Flonase is working better. Who knows. I do like the Flonase. Easy, and effective.

That's hilarious, Merrill! I think I'll watch just so that I can say, Hey, that's Merrill's house! I loved looking at your pictures, Jessica and Katherine. You have such happy looking families. One day I'll get my act together and put some pictures where others can see them. I'm quite proud of my two Golden Retrievers, Duke and Ruby! Great idea to share.

Sadly, I do exercise my legs ever since I was dx six mths ago. It just doesn't always help. I'm sure it does some of the time. The compression hose help A LOT. I couldn't live without them. As for being worse during my periods, that doesn't seem to be a problem. I did very well on the midodrine and florinef for the six mths I was on them, but my BP, which is usually low, has been way up for me. I had to stop the midodrine completely, and then I went down to half of a florinef (I think it's .05) but the chest pressure and BP didn't go away. My BP is still around 158/95. The chest pain is gone. Hooray! My heart rate is great, so I'm not getting lightheaded, either. Another Hooray! I still wonder if some of these symptoms we POTSers have are connected to hormones that haven't been linked to this yet. Like the hair loss. My Mom, told me she lost most of her leg and arm hair after she went through menopause. I'm not going through that, yet, but it does give me something to think about. Besides Paige, is anyone else losing hair? Just call me Hairless in VA!

You're probably already gone, but best of luck with the presentation, and have fun!

Oh Morgan, I'm so sorry about your precious little kitty. We lost our beloved Golden Retriever of eleven years a year and a half ago. It still hurts. People who have never had a pet don't understand how much love they provide. It is like losing a child. Hang in there. It helped us to talk about Bo so if you want to write to me, please do. I'll be thinking of you. Deb

Hmmm. I started feeling bad after I gained the weight. Then when I started having more POTS symptoms, I lost it all and continued to have even worse symptoms. Then when I was at my very worst, symptom-wise, I lost even more very fast. So, I think I would say yes, too. But none of the weight gaining and losing was intentional. That's another puzzle piece.

Thanks Paige, It scares me sometimes because it comes from out of the blue. I am VERY fortunate in that my good days far out-number my bad days. But when I have a bad day, or two or three in a row, it is SO bad that it just doesn't make sense.

I don't understand why, but some days the pooling in my legs is MUCH worse than usual. Like today, a few minutes after I stand up I can feel the blood pooling and then my legs ache and I have pains all up and down them, and I quiver slightly. Then I get this headache behind my right eye. I understand the pooling and the pains, but I also have trouble breathing. It's like tiny spasms in my diaphram, and I feel like I can't quite catch my breath. It was worse today then it's been since I was dx with POTS. My blood pressure and heart rate are remaining pretty constant. I wear compression hose because if I didn't, I wouldn't be able to walk. I'm not on any medications right now except my allergy/asthma medications and Zoloft. I had been on midodrine and florinef but had to stop because of side effects. I saw my cardiologist and my neurologist on Monday, and they didn't know what the cause of the breathing problem could be other than it is probably related to my asthma. But the inhaler doesn't relieve it so I'm a little skeptical about that. Plus, I've lost almost all of the hair on my arms, and the hair in my underarms and on my legs is very sparse and is growing very slowly. I only shave once a week now. Plus, my periods are weird. I start spotting days before the actually flow starts, and then I spot some a day or two after I've stopped. Any ideas? Anyone else have any of these symptoms?

Yes, I wonder what this means, too. Maybe we all have some gene or something in common that others don't have. The Mayo Clinic asked for some of my blood for research purposes. Wouldn't it be great if they found some correlation, and then are able to correct it? I'm an optimist, and I will always believe that their is hope for us to have a more normal life.

Great flowers Nina! I have that same hardy geranium. It was really spectacular this year, like your's. I guess the weather conditions were perfect for them.

Ditto with the above. You probably should talk to your doctor. I started having problems when I was in the hospital after being started on Florinef. The cooks had to grind my food so that I could swallow. The doctors thought it was due to anxiety, and it probably was exacerbated by that, but I believe it was the Florinef that caused it. I stopped having it every time I ate when I went home, but I continued to have it occasionally after I'd gone to bed. For me the feeling was more like my throat forgot how to move the muscles to allow me to swallow. I could put my hand on my throat and it helped. It was almost like I had to touch the muscles so that they knew they needed to respond. What really made me think it was the Florinef is because it has gone away now that I'm off of the Florinef. And yes, you most definetly can become allergic or just intolerant to medication after taking them a while. That's why I'm off the Florinef. It was making my breathing very labored.

Losing muscle was part of my problem, too, when I lost that 40 lbs last summer. I was so weak, it was hard to put the groceries away or even unload the dishwasher. I'm not that bad now, but I don't have the strength I used to have. Since I stopped the Florinef on Tuesday, I know I've lost some weight already. I believe it's because we have to use sooooo much energy each time we stand up. I'm sure most of you can feel your sympathetic nervous system fighting inside when you stand for very long. I tried to explain it to one of the doctors months ago as feeling like a war was going on in my chest. I swear it feels like my organs are battling each other for control. I am curious about the digestive thing, too. I could eat as much as I wanted without ever worrying about gaining weight. I weighed 115 when I was 32 probably due to going through a divorce. I gradually added it back on and was at 135. I started really gaining weight though after I got married even though I didn't change my eating habits. I wonder if somehow my autonomic nervous system was going wacky as early as then. I definitely had GI problems that began around that same time. And, I had episodes when I almost fainted when I was too hot. Looking back, those episodes resemble the ones I have when my BP goes too low. After reading all of your posts, I wonder if there is a connection with being thin and being succeptible (spelling?) to disautonomic problems. Yes its "very interesting".

I just realized that when you wrote you would be spending the rest of your life "burning in ****", you were reffering to the burning you have been experiencing from your illness!!! I looked up in Google and got this link http://www.ninds.nih.gov/health_and_medica...entpain_doc.htm about Central Pain Syndrome. That's when I remembered you had written about burning up and being real hot. So sorry I didn't pick up on that sooner. After reading that info, I see why you sound so low. Hopefully you have a mild case of it. I'll keep you in my thoughts and hope that you'll be doing better soon.

Gosh Merrill, You wrote MY story! I too was extremely skinny (5'6 1/2", 115 lbs although I did manage to gain to 135 lbs in my mid-thirties and felt great). I met my husband to be in 1995 (when I weighed 135), got married in 1996, and put on 40 lbs too. I have no idea how that happened, but I was miserable. I think that is when I first started having problems with my autonomic system. In late 2003, a little more than a year before I was diagnosed, I started losing weight for no reason that anyone could determine. I went down to 123. I was a mess. After I was diagnosed this past Dec. 31st and started on Florinef, I put back on 18 lbs. I now weigh 141 lbs. I feel sooooo much better at this weight then when I was heavier. I had so much more trouble breathing, and the GI problems were more severe. I'll stop eating completely before I go back up to 175 lbs. Something that I found that helps me is to eat small meals during the day. I guess I fit into the grazing catagory. Otherwise I get terribly bloated and nauseous. I have read a good bit about carbs and dairy products having adverse effects on people with POTS. I guess I'm just not ready to take that step. Good luck to all of you, and I hope you'll keep us posted. If it helps you, then who knows? Maybe your example will be the impetus that I need!

Welcome to the forum JSB. As Nina wrote, not everyone suddenly has POTS. Mine was very slow coming, about two years before I had full blown POTS. I've had, and still have, most of your symptoms except for the tachycardia after eating and the constipation. I have intermittent diahrrea. I lead a pretty normal, average life with all of that. I work full-time and have several flower gardens and two vegetable gardens. I love to be outside. I love to cook and entertain. And, I still do all of that. But, I had to learn to take things easier and to change course from time to time. My house is no longer as clean as I once kept it. I have to lean on people a bit more, and ask for help when I once never did. Sometimes I wake up ready to do something I've planned and had to postpone or cancel it because I just am too tired. These are little things that all of us with Disautonomia learn to deal with. It all has gotten easier since I started reading the posts on this forum. I don't think I would have done nearly as well if I had to handle this illness alone. This is a great place to vent and share and learn. Please try to find a doctor that specializes in autonomic nervous system disorders. It will make a huge difference in your care. But, be prepared to try different medications. As you have already experienced, most of us are very sensitive to medications and what a "normal" person can take usually is too much for us or totally wrong. Once I got on a regimen of medications that I could handle, my life became incredibly better. The bad days are never as bad as they once were. There seems to be more good days now than bad. Some days I think that maybe I don't have POTS anymore. I'm quite an optimist. Good luck with the GI appointment. I hope that something good comes from it. And remember, we're here if you need us.

Wow, this sounds exciting! Since I was a teenager, YIKES! that was 30 years ago!!!???!!! Anyway, since I was a teenager I have tried to eat a healthy, well-rounded diet, but I do enjoy my carbs. I can't wait to see how you all three do!