DawnA

I am glad to hear that I am not the only one with these tremors. I almost always have tremors when I flex or extend a muscle such as biceps. It is kind of like a muscle jutter or sputter. Also I have difficulty with walking, esp if I have done a lot . My legs are weak, shakey and don't want to work. Do others get these symptoms? Dawn

Hi Jackie! I am also 36 turning 37 on March 7th! I had not smoked for 13 years and I started up again after becoming ill. I was just sooooo frustrated with everything and everyone. I tried to do everything right but nothing was going right so I did not care anymore. I have not told my PCP. I am a light smoker and a closet smoker. It feels good to do something naughty and rebellious even if it is only harming me. I did quit 2 wks ago, but I sure could go for one right now. I just started the florinif two weeks ago and I am feeling soooo much better. I have gained eight lbs which won't hurt me. I hope I don't put on anymore. I am also very hungry. You have to be careful not to eat too much salt and drink water to avoid the headache. When I tryed it two years ago I was afraid of it and stop taking it. I did not feel much of a difference dthen. Probably because I was on the wrong beta blocker. I think our bodies change too. For the pill I take microgestion. I do not know much about it. I probably should take aspirn if I start smoking again. Where do you live. Iam in Wisconsin. Dawn

Welcome Jackie; nice to have you on board. Anxiety was a big issue for me before I knew what I had and was on the right medications. I felt many of the same things you are feeling right now. My heart goes out to you. I pray that you can find a supportive family physician. I had a period where I was having panic attacks in public and it was really embarrassing. Many times I was sent in an ambulance to the ER where I was treated terribly. Thank God I no longer have these episodes. I can tell you my body is very sensitive to emotions and I definitely feel everything more. Before becoming sick things never bothered me and I was an adrenaline junky. Now I avoid anything that causes too much adreneline. I want you to know you are not crazy even though you may feel like it. This illness and poor treatment from the medical community can make you feel like it at times. Don't let these feelings overcome you. You do need to take care of your mental health, because it can help with the healing process. A psychiatrist's job is to diagnose you. Often they find something and dismiss the medical stuff, because they do not know anything about dysautonomia. I had a counselor and a psychiatrist who worked together diagnose me with cyclic manic depression. Yeah, one week I was hyperadrenergic and the next my blood pressure was so low I could hardly hold my head up. My counselor just could not believe someones symptoms could wax and wane so much. I look back at it in humor now. Can you believe I am still seeing the same counselor. I knew she was a great person and very talented counselor. I had to give her a chance. She now is much more knowledgable about the POTS and no longer thinks I am manic depressive. I can laugh about it now. We now have a great relationship and she is a good support system. If you are able to find a good counselor willing to learn about POTS I strongly suggest it. Dealing with emotional stress just makes all of the POTS symptoms worse. It is nice to have support. You will find a lot of it right here on this forum. Hormones: I havethe night sweats and and very symtomatic PM...major PMS. It is good to have your levels checked. Mine where fine. I now take the pill continuos so I no longer have my period. I am no longer bed ridden PM, but still more symptomatic. Medication: I am on 20 mg of Nadolol...could'nt tolerate atenolol .1 mg florinif..midodrine did not help effexor and wellbutrin...they have helped with the POTS symptoms,fatique and depression. It took a lot of trial and error to make me feel half normal. If you are unable to find a Dr knowledgable about POTS maybe you can find someone who is willing to learn about it. I gave my PCP the most consise information that I could find on POTS and treatment, it was a guide for Drs. I wish I still had a copy of it. She has done some research on it herself. She has become very competant in treating me and now sees other POTS patients. There is a light at the end of the tunnel. Hopefully the tunnel is not to long for you. This is a process of grieving, figuring out your body, finding the right meds, and a good team of Drs who are willing to try and help you. What I have learned from this process is that we are in control of our own healthcare. Equip yourself with knowledge and have proff to back yourself up. I had to learn to stand up for myself, which is something I don't usually do. Hang in there! Remember we are here to support you, noone should have to go through this alone. Thanks to Michelle we have this wonderful site. Big Hugs Dawn

Louby: I have had the claws thing when I used to hyperventilate. I thing it is caused from to much CO2. Do you have difficulty breathing? Dawn

I doubled checked and the symptoms for POTS on this site include headache/migraines. I am sorry your wife has such horrible migraines. She is fortunate to have someone as supportive as you. Dawn

Wow Nina! That is a lot of tests. Did they all come back normal? At least a diagnosis of gastroparesis!! I can understand your reluctance for furthur testing. I am happy to hear their are others who feel the same emotionaly as I do about testing. It helps me to realize that my feelings are normal and not a sign of weakness. I hate the waiting for the results and the fear of everything coming back normal. It is so emotionaly wearing. Normal test results is so common amongst us. I am in the process of being tested for mito. All the tests have come back normal, which I hear is common for adults. I don't feel up to doing anymore testing. Not at this time anyway. But, I feel obligated to follow through for the sake of my children and other family members who are ill. I know of others who have exhautive testing for mito and were not dx until they had a fresh muscle biopsy. This process took them 10-15 years. I admire their strength, courage and persistance. It must of been so hard for them! I am sorry you are having stomach problems with little relief. Not much worse than a bellyache. I hope you can find some answers or relief. That test Tearose mentioned sounds very interesting. I too, love being able to be a part of this site. It is nice to share and learn from one another. If I did not have this outlet I probably would of gone along with the psychiatric diagnosis and would be all doped up on meds, drooling and staring into space. Take care, Dawn

Thanks! Dawn

Carissa's appt went very well!! The nurse thought I was crazy and was shocked when the Dr told her it was a legitamite illness. The cardiologist believes that she has POTS and is treating her for it without a TTT. He may tilt her later if she does not respond to treatment. He did check her heart with an EEG and it was fine. She has also had basic blood tests and thyroid tests. I feel very blessed not to have to struggle with getting treatment for her. I have struggled enough with Drs and I still am re other medical problems. I hate to see any one else struggle t get treated. The cardiologist wants her to see a neurologist for migraines. She has an appt in May. They are trying to get her in sooner. I am happy to see that medical treatment for children is better than adults. I hope it is this way for everychild. Thank you everyone for your thoughts and prayers. I will keep everyone posted. We learn so much from each other. Dawn

Futurehope: Well said! It does take sure motivationto get out of bed. I like the days that I have to bring the kids to school, because it gets me up. Sometimes I go home and go right back to bed and their are times I get up. If I don't have anything to get up for I won't. However, I do need days were I sleep in or sleep the day away. I have no choice. My body will not allow anything else. I hate the fatique more than anything as far as my symptoms go. Back to the Mono topic. My daughter who is being evaluated for POTS had a mono- type virus. Her spleen was also enlarged. They could not give the virus a name. Dawn

Carissa is 12 and has had mild symptoms on and off since she was in second grade. In second grade her teacher thought she had depression and then considered ADD. Her grades were good, but she was always lethargic and could not focus. It went away for a while. I now think this was the onset. She has had many periods of anxiety/depression type symptoms since. Right now her symptoms include dizziness, presyncope, SOB, chest pain, heat intolerance, fasting intolerance, migraines, fatique, nausea , aches and pains and brain fog. She states or cries that she does not feel well. Two and a half years ago she went through a nine month period of feeling very poorly and was not herself. I kept bringing her to the Dr. and was often brushed off. She did end up getting pneumonia and they diagnosed a mono type virus. Then she got better. THings started up again this fall and the symptoms are more pronouced. She has always been a frail and sensitive child and I always felt something was wrong. It is hard when they are so young to describe how they are feeling. Carissa is much more able to tell me how she is feeling. She hates going to Drs, but seems releived to be going. I hope your daughter never has symptoms! By the way her appointment is Friday. I was wrong on the day. I will let everyone know how it goes. Dawn

Thursday is my daughters appt with a Cardilolgist at childrens hospital of milwaukee. I am so nervous that the cardiologist is not going to know anything about dysautonomia. I don't want her to have to go through what many of us went through to get a diagnosis. .... She won't have to because I already know what she has . Her symptoms are increasing and I am positive she has POTS. I just don't want any delays in treatment so she can improve her quality of life or prevent this from getting worse. Kids are only kids once Please keep us in your thoughts and prayers! I will let you know how it goes. Dawn

When I was hit hard with POTS two years ago I lost 35 lbs. in 6 months. I still remain on the slim side which I think is unusual for POTS. The Drs. say that I have something going on other than the POTS, because I have CNS deficits. Maybe that is the cause of my low weight. I get a lot of comments on how good I look. Iwould rather be fat, ugly and healthy. Dawn

I love the outdoors, but no longer go out. I can not take temperature changes. The only time I spend time outside is when it is sunny and the temperature is between 60 to 75 degrees. I also wear lots of layers. My kids hate rididng in the car with me, because I blast the heater. If I could I would wear gloves while typing this, because my hands are freezing. Dawn

I don't think I have EDS because I definitly do not look young for my age and my fingers are short. however, I am hypermobile and my eight year old can fold herself in half backwards. It is pretty scarey looking. Dawn

I have POTS and I am sure my twelve yr old daughter has it. She goes to see a neurologist at Children's on the 23rd. I have heard of others who have children with it. There must be some kind of genetic connection! Dawn

Great News Nina! I am proud of you.! A 3.9 is awesome at least you have room for improvement with that measley tenth of a point!You give us all inspiration and hope. Good job!, Dawn

Hi! I have not been here for a long time. I have been to busy researching and worrying about what I might have other than POTS. LOL Then I get totally burnt out and depressed about it. I too have become a hypochondriac. How can we not ! This causes so many scarey symptoms. I went through the whole shy-drager thing too. I also have CNS problems along with POTS. They kept telling me something else was going on. MSA looked like the answer. I was positive! Even had a neuro mention a multiple system degenerative disease. I am no longer worried about shy drager. I feel for you it is very scarey. I think it is common in the beggining of this illness. You probably don't have shy-drager! At least I hope not. My hypochondrism has brought me to another illness called mitochondrial myopathy. Along with the dysautonomia , I have CNS and neuromuscular problems. Enough problems to get me disability on the first try. Yet one of my neuro feels I have conversion disorder. Now I am 99% sure my daughter has dysautonomia. She has the classic POTS symptoms. I also have a grandma who died at 47 of pneumonia. They say she was always sick in bed. I have been networking with other mito patients and have been getting an overwheming amount of responses, I am getting freaked out. I have learned a lot. Sometimes I wonder if I should just forget about it and not stir things up. I really worry about my kids. Maybe I am better off not knowing. I need to focus on something else. It is so nice to hear others stories about what they worried that they had. Oh I used to have MS too. LOL A fellow hypochondriac, Dawn

From the research that I have done on CFS. It states that 96% of CFS patients have dysautonomia of some type. Just do a search on "CFS and Dysautonomia". With CFS you can have problems with your CNS and the hallmark of the disease is post exertional fatique that takes more than 24 hours to recover. Here is the diagnostic criteria for ME/CFS published Feb 2003 http://www.cfids-cab.org/MESA/ccpc.html I hope this somewhat answers your questions. Dawn

It is funny how we crave the things that are the worst for us. It took me a long time to realize that sugar made me feel so bad. I was really addicted to it at one point. Now I only have it occasionally. If you are going to cheat make sure it is not on an empty stomach. Also a piece of hard candy after a meal seems to satisfy me if I am desperate. However the week of PMS is very hard to control. I would like to do what Michele did and cut it totally out of my diet so I no longer like it. I don't know if that is possible for me! I like food too much. weight is not an issue for me so I have always used the excuse that it is OK. Dawn

This is my first post here! This has touched my heart! Angie, don't be so hard on yourself. This is a very difficult thing to deal with. I have been diagnosed with POTS, autonomic neuropathy and gastroparesis. I have difficulty walking and have an ataxic gait for this I have been diagnosed with conversion disorder. For a while I second-guessed myself and thought maybe this was my problem. Maybe the doctor was right ! Their is nothing wrong with my CNS or muscles. I know now that it is not true and I am convinced that it has something to do with metabilism and mytochondrial dysfuction. I have felt this for a long time. But I was not ready before to present it to the doctor. I now feel that I have the knowledge and evidence to back this up. Sometimes it takes time to sort through everything and figure things out. Unfortunately, we can't count on Doctors to do this for us either they are morons or don't want to take the time. It is so sad that we have to bring documents with us to prove that we do have an illness and documents to tell the doctor what it is. But what really frustrates me is to hear that doctors dismiss the evidence that you have presented to them and are so narrow minded that they go with the psychiatric dx. What secondary gain does your daughter get from missing out on living the life of a normal 14 yr old. Being able to do and participate in the activities that her friends are doing. None!Conversion disorder is rare. I feel sad for you and your daughter. I have had the seizures too. My seemed to be related to stress or overdoing myself. I have not had one in a year. everyone with dysautonomia responds diffirently to meds. It is a matter of trial and error. I take nadolol (beta blocker) and I feel that this has prevented me from having anymore seizure (autonomic crisis). Make that appointment with Dr. Grubb! It can always be canceled. Maybe you can get her into Mayo clinic in Rochster they have a full autonomic lab. Since your daughter is only 14, I would hope they would make it a priority. Your only a child once! As far as the nausea, vomiting and stomach pains. It sounds like it could be gastro paresis ( delayed gastric emptying). It is common among dysautonmics. It is diagnosed by a gastric emptying study. I will pray for your daughter and your family. Especially that you are able to find a local Dr. who is supportive with an open mind and willing to learn more about dysautonomia and willing to follow through on recommendations from Dr Grubb or another autonomic specialist. GOD BLESS! Dawn Anich