GingerA

I know that Dysautonomia awareness is in October but I have found conflicting ribbons for the month. Is the ribbon dark blue or turquoise?

Thanks everyone. I think I am going to start with renting. As much as I hate to admit it I think the time has come.

Thanks Katy. I had not even talked with my husband about this but he just came to me a few minutes ago and said you know you may have to do it. Like you said I would rather use it than sit at home and do nothing. Thanks for the encouragement!

I was wondering how many people use wheel chairs even part of the time. How did you finally decide to use one? I have been trying to avoid it but it is becoming obvious that I am going to need one at least some times when I am out. Just not really ready to face it.

I have that feeling of being on fire too. Even regionally, like my hands will be so hot but not my feet.

Not that I know of.

I have been looking on the internet all day for an explanation for my recent escalated symptoms and have a theory. Alone with POTS I have MVP. According to some things that I read any change in body chemistry can exacerbate symptoms. For the last several weeks I have been trying to lose weight using Weight Watchers. I thought this more healthy eating style would be helpful to my system but apparently not. Any thoughts? Can this change in eating really be the problem even though the habits are healthy?

Beginning

Thanks. I was being to think I was losing it.

I have been dealing with POTS for a while now. But lately I have been having terrible bouts of anxiety for no reason. Also I feel like my skin is burning one minute and freezing the next. Am I going crazy?

I have this reaction too. I can feel fine while doing the exercise but the next day (or next few days) it is terrible! Fatigue and pain are awful! I have stopped exercising at all out of fear. I know that is not the answer but it is all I know to do.

Cymbalta helped my pain but within weeks I was very depressed and suicidal. I have had this issue with most meds like this.

Hi! It has been a while since I have been on the forum but I really need some advice. Monday I have an appointment with a new doctor. He (to his credit) says that I know more about POTS than he does so he will follow my lead. I have POTS and fibromyalgia but have not had any medical treatment in a long time because there is no where near me that understands my condition and recently I have lost my health insurance. In the past I have tried Cymbalta, Lexapro, and Neuraton for pain and depression but all made me more depressed and even suicidal. The neuraton made me gain a lot of weight also. I have tried beta blocks for palpitations but nothing helped and all made me extremely fatigued. What else should I try? My main issues are the pain from my fibro and palpitations when I move too quickly.

I have a question that is really bothering me. Has there been any evidence that mother's with POTS have children with health issues? The reason I ask is that I have three children and all have some sort of issue. My oldest and youngest sons have asthma and allergies. The oldest also has severe flat feet, and OCD so extreme that he has been taken out of school and placed on medical leave. He is now 16 which is the same age I was when I started exhibiting symptoms. I see signs of POTS in him but he is in total denial. I don't want to push the issue until it is a problem that we have to address because of course his doctor says that he doesn't see that signs. My middle son is 12 and has ADHD but is for the most part healthy but my youngest is 5 and has a bicupid aeotic valve, had an H-type fistula that needed repair, and a possible learning disability. I just feel so guilty. Did I do this to them?

Hey Toddm, I have gained weight too. When I have a flare up I feel extremely hungry and can not get full no matter how much I eat. My family says this is a sign that they notice just before I get really sick. Do you have the same kind of feeling? I don't understand it at all.

Batik, I have this too. Doctors disagree as to whether it is a Fibro thing or a dysautonomia thing. I had all sorts of tests with no answers other than it is not caused by nerve damage. Anyway, I have learned to be proactive. Sometimes that helps. I try very hard not to let my hands or feet get cold or damp. (I know, almost impossible right!) I use something called "HotHands" hand warmers on cold or damp days. Deer hunters in our area use them. You are suppose to put them in your gloves to keep your hands warm but I also put them in my socks. If possible stay in and rest. I have tried pain medicine but haven't really found anything that helps. My thoughts and prayers are with you. It is a rainy day here in Georgia so I am inside watching lots of TV and bundling up because of the same pain.

Thank you for the support everyone. As far as local support I don't have much. There are several people who say "Oh I'm so sorry" but thats it. I am working on a way to get the kids home after school. That is my biggest immediate concern because my job is 45 minutes from their school. Also trying to think of ways to make extra money at home. I am already running the business and taking a full load at school, plus the kids and the house--now this. I really don't know if I can make it,

I started not to post this but I can't imagine anyone else who would understand. This has been a horrible day. This morning I found out that my husband has been seeing someone else for a few months. His excuse--I am always tired! Wow! Like I can help that! He says that we never get to do anything because I am always sick and he just wants to be happy. What could I possibly do about that! I have been working against docs orders to help pay bills that he could not pay and so when I get home I am exhausted. On top of that I have been without meds for a month because I no longer have insurance. Now I don't even have him to help me with the kids. What am I going to do now?

Thanks for all the tips. Southbel I totally understand because I am actually more south than you. I am in Georgia. I wonder a lot if the "wet cold" that we have is worse than a drier climate.

I was just wondering if anyone has tips for dealing with the temp change. I know that a lot of people have trouble with the heat but my pots is worse in the cold. Its like my body gets a chill and it sticks on being cold. I can't warm up or get moving. Help!

I haven't reached 40 yet ( I'm 38) but I totally reject the notion that this condition will just disappear over time. Medical science does not know enough about us to make that statement. My personal opinion and experience is that this presents itself in peaks and valleys. At 16, I started having symptoms and got no answers other that docs telling my parents that I was depressed. (If you feel bad and no one listens it will make you depressed!) I had times when I thought I was better. Even for years, only to crash again. Now I realize that taking care of myself can help prepare my life for the coming crashes but they will always come. It is just part of who I am.

I don't know what is triggering my symptoms but I am having a terrible time today. No sleep last night but I am so sleepy. My hands are achy and swollen. Brain fog is terrible but worst of all is that I can not get warm. I have a very hard time with temperature shifts. Any helpful tips?

I want to believe that he is totally healed not only because it gives me hope but because being a preschool teacher I LOVED the Wiggles. But somehow I just don't buy it. Like you said, he is only touring for a short while and you don't know what is going on in between shows.

I have MVP and it was diagnosed with an echocardiogram. However, even the cardio doc that I see doesn't think that it is a big deal. So I don't know if the docs just don't know enough about POTS or if they just try to find every detail about a person before diagnosis. (I am betting on their lack of info). Sorry you are feeling frustrated. I went through the same thing and finally had a melt down in the doctor's office. He sent me to Mayo to PROVE to me that it was all in my head. It took the docs at Mayo less than 5 minutes to tell me what was wrong. Then they did tests to back it up. So have a melt down if you have to! Stress to the doc that you know your body and something else is going on that he is not addressing. I hope you get some results.

Maybe I am just having crazy thoughts because I am not sleeping well but. . . Wouldn't it be nice to have POTS cookbook like they have for other health issues? I never know what to eat and then I too tired to figure it out so I end up eating something I shouldn't. I wish I just had a planned out list to go by in time of mental fatigue.