GingerA

Where is she located?

I think one of the problems with tracking this genetically is that problems with the autonomic system are so discounted by the medical profession that many people with these problems try to "push through" because doctors tell them that there is nothing wrong or that it is all in their head. So people never tell because they think that they will be ridiculed or they are making to big of a deal about the way they feel. Since my POTS has gotten severe enough to finally get a DX I have discovered that several cousins have autonomic problems as well. Also my dad complained constantly of feeling bad and other strange symptoms that we just dismissed either because of his age or because "that just Daddy." But I tried to tell my son's DR. about this and he just said, "This isn't really something that is passed on. You shouldn't worry." REALLY!

Hey Running Wild, Welcome to the world of POTS! your symptoms sound very much like mine and many others that are on this sight. I have been trying to get answers for 16 years before I finally got a diagnosis. But to be honest, other than having a name for my condition the medical people haven't really helped much. I even passed out yesterday and the ambulance was called. The EMT said he had never heard of this so just lay down and rest. They either don't know enough to treat us or they don't care. Still there are people who suffer from this everyday and have great information to pass along. Even though it is not "legal medical advise" I have seriously learned more about how to take care of myself from this site than from anywhere else. My advise is search this site with a fine tooth comb and print out what you think is relevant to you and take it to the doc and say, "SEE!" You said you had one doc who said he would treat this the way other docs did so he may be open to following things that you find. There are links to medical research and personal accounts on this site as well as the tips and the forum. If nothing else maybe the "medical papers" will get some attention.

I have a double bed that is raised about four inches. It worked great for a while but now it seems to be sliding toward the headboard. I was told that the entire body needs to slanted to help with circulation while we sleep. Just tilting your head will not work.

How is the best way to tilt the bed? I have cement blocks under my head board but it is putting pressure on the foot board & causing it to break because of the slant. Are there beds that will slant the entire bed not just tilt the head?

Winter is had always been worse on me and I live in Georgia where it doesn't even snow much. But we do have cold damp air all winter long. My husband is great about watching me. He has learned to put extra blankets on my side of the bed and not to expect much from me until Spring. LOL. What is worse is that the most stress filled holidays are right smack in the middle of winter so I know to clear the calendar for at least two weeks after Christmas!

That is the prefect name!

Julie, Are you keeping some carbs in your diet? I am gluten free but I can't go carb free or I have symptoms like you described.

I think that this is such a complicated condition that docs really don't know anything much. My experience is that the symptoms come and go. Especially if you don't know what your triggers are. For me, I am in agreement with the others who said that cold is worse. In the summer I have low energy and if I don't sit down I have trouble breathing but in the winter I CAN NOT get warm, the brain fog is worse and I have episodes of severe pain. The best thing to do is to keep the appointment at Mayo and with anybody else who will seriously listen to you no matter how you are feeling. You need to learn as much about YOUR POTS as you can. Knowledge is the key to understanding how to function properly. I am just learning to build my life around what I have to do and not what I want to do. But I sincerely believe that this can be managed so that we can live a fulfilling life. . . .It may just be a different kind of life than I am use to.

I have this too. Actually this is the symptom that finally go the ball rolling for me to get help. The first severe episode I had of this speech and brain fog I was at work. My boss thought I was having some sort of blood sugar problem and took me to the ER. Of course nothing showed up on test but it was my family's wake up call that something was wrong and I wasn't just making everything up. Now they know that if I start "not making sense" then I need to lie down. My 14 year old even sits with me some times and teases me about the funny things I say or the missing words. He does it in a loving way and we have a good laugh until I feel better.

Mwise, Thanks for the pep talk . I need all of the help I can get trying to figure this out.

I think it might be the combo of both eating out (I thought I was doing good but you never really know when you eat out) and the activity. I was just so happy to think I had found a way to stay in my field because I love it. Maybe I can work it out some how. I didn't think about the stress. it is so frustrating because in a way I think that if a doc said I was suppose to be better and I am not then it must be my fault some how. Plus I really need the money from working. I have been out of work 7 months now & can't get disability because all of the doc say that you will get better. But they don't tell you that you will get better but not as good as you were to start with.

What a bad day today! I am typing this very slowly because my brain fog is so bad that I got confused coming out of my bathroom to the laundry room a few minutes ago so please bare with me if there are mistakes. a freind who just bought a daycare center in a neighboring town asked me to consult on her facility.I was feeling so much better so I thought it would be just a few days and at my own pace so I took the job. Last week I went two days with no problems but I went yesterday and BLAM. Today I cant do anything. The bad thing is on top of that the word got out that I was doing work in the field again so my phone is ringing off the hook with people wanting me to either sub or consult. I thought working like this would be the answer but now I don't know. Can't see today very well & my feet are freezing! What happened to you will be better in 6-9 months. Doctors are so stupid some times

Yes I feel this way too. i feel like if I don't eat I might die. Katybug you have just helped my self esteem so much! I have terrible cravings for fast food at times and have been beating myself up because I knew it was bad for me but I just couldn't resist. Sometimes I would be literally sick without it! I didn't think about the fact that it had so much salt. No I don't feel so much like a out of control junk food addict.

I had a terrible experience with Nyquil too so be very careful with that. My heart rate shot up over 220 and I wound up in the ER. They actually stopped my heart and restarted it.

I don't know how large your kitchen is but I have a rolling office chair that can be raised up. It has a foot rest so if I need to I can raise the chair high enough to comfortable reach the counter, slide the chair so that it is horizontal to the counter allowing room for the foot rest if I need it. Also I when I feel like cooking I try to cook enough to package extras for the freezer (esp. spaghetti and stuff like that) so that I can have them when I don't feel good.

Bren is right. There are so many different symptoms. I have blurry vision at times and terrible brain fog. Also I have a lot of pain at times that docs tend to dismiss but I have read in this forum that many others have pain as well. That does give me some comfort in a strange way. Its like you are not crazy there are others out there that understand what you feel. It is just hard to me because I have doctors who told me that I would "be better in 6 to 9 months". They didn't explain that "better" does not mean the same thing as "totally healthy again".

Thanks Julie. We will try it.

I have the same problem sometimes. I feel RAVENOUS for days and if I don't eat right then I get sick. I think it is just one of the joys of dysautonomia.

Thanks for the input. I was afraid that would be the case. I will try the google search that seems to be the best way to go. I looked at the Paleo diet and it looked like a good idea but very hard to put into practice with 3 kids under 15. I will have to slowly sneak changes in on them. lol

I was just wondering if anyone saw a nutritionist and if it helped. It looks like this is affecting me and my son so I need to get a really good handle on the best possible way for us to live.

You were right Julie! Not only did the doc look at me I was being an over protective mom, when I tried to tell him that I had POTS he said, "You do know that is not a disease. Just some peoples body's make them feel crappy once in a while." MY MOUTH HIT THE FLOOR!!! I would like to see him live like this. Anyway, he did put a heart monitor on Matt for 24 hours. But my husband was so mad when I called him to tell him what the docs said that he told me to start looking for someone else.

My POTS symptoms started when I was 16 (I'm now 37). Now my son who is 14 is having arrhythmia and extreme fatigue. I am so scared but I don't want to scare him by saying too much. I have an appointment for him tomorrow with a cardiologist but the problem is I don't know what to pray for! If they don't find anything, is that really good news? I went to docs for 21 years before I finally got a diagnosis. But on the other hand this is a horrible disorder and I do not what my baby to have to go through this! I'm so confused. . .

It's perfectly normal to grieve. This might be hard to grasp, but this stage will NOT last forever. I had not thought of this as a grieving process but you are exactly right Julie! Somehow that makes me feel not so guilty about being upset that I can't do everything that I once did.

Thanks Julie (Mack's mom), I didn't know that you had this too. I just knew from a conversation that we had the other day that your son had this problem. (My son is the one that is now showing symptoms too). I talked to the adviser who fixed the classes so that I do not have to intern for at least another quarter. It will just set back my graduation. Maybe another by then I will feel like being in the classroom. I do believe that if I can find out what type of POTS I have and what is behind it, I can feel better. I just don't know how to get anyone to help us. I hear everyone talk about this test and that test but all I got was a doc who said "you have POTS. Eat a lot of salt!" At the time I was so relieved to have a diagnosis that I didn't question it. Now I need more answers! Jnew, Don't give up! This is not going to beat us!