Christine

Hello, I use to get the worse headaches that seemed to last forever. Advil would help sometimes but not always. I would lay down with a cold cloth in the dark. This seemed to work the best. I started to figure a pattern out when I was getting these headaches. I would seem to always get a headache in the late afternoon or if I became upset. Also, the light bothers my eyes very much. I started to wear sunglasses all of the time. That has helped too. I think my eyes are more sensitive to the light since I have been diagnosed with POTS. Good luck, Christine

Hi Linda, I too had that same experience with my blood pressure being that low. I couldn't talk but I started to cry and I felt as if I was going to get sick. I tried to fall down but I was strapped to the table. I lasted maybe five minutes. I too go to Dr. Fouad. My first visit there I felt very uneasy and I walked away with nothing new. I was more confused by going. After I did my own research I felt more comfortable the next time I saw here. She has been more helpful as time went on. She did tell me that I should go back to my own neurologist and continue more testing. Actually, she recommended someone at the Cleveland Clinic. Best of luck, Christine

Hello, I was on Toprol. I currently went off to try and have a baby. I really liked Toprol and I felt better on it. I was taking 75 mg a day. It worked wonders for me. I would take 25mg in the morning then 50mg at night. My blood pressure did drop but my heart rate slowed down and it felt good for once that my breathing appeared normal. While I was on Toprol I could walk up stairs without getting winded. Now that I am off, I notice a difference and I can't wait to go back on it. For me, Toprol worked great. Good Luck, Christine

Thanks, Beth I go every year to make sure nothing has changed. I guess, a lesion is like a bruise or scar tissue. Something happened for me to have this. They thought maybe I had a viral infection that exposed this lesion. They really aren't sure and it is way to deep in the brain/stem to take a better look. I hope your mom is better. I remember when I first had a CAT scan they thought I had a tumor. Actually, I have had every disease out there. It is funny, how POTS can mimick a lot of different diseases. Thanks, Christine

Hi Beth, Thanks, I have a lesion where my brain stem and my spianl cord meet. It is pretty deep and there is no way to remove it. Thanks for your input, Christine

Goodnight, Beth! I hope the twitches go away soon! Christine

Hello, I have a Pons lesion and I was wondering if anyone else has one? For at least two years they thought I had possible MS. Well, after my spinal tap came back negative they told me that I didn't have MS. I am grateful for this. They did do a nerve test on my legs and arms (fingers etc.) I do have some mild nerve damage. Finally, they sent me to the Cleveland Clinic and then I found out I had POTS. I didn't know if my lesion on my Pons is some how related to my POTS? They really didn't say much about the lesion at the clinic. I just have to go for a MRI every year to make sure I don't have anymore or it hasn't grown. Has anyone heard of this? Christine

Hello, I too have the "twitches". I get them in my left eye. I once had it for 3 weeks and I just about went crazy. No one could see my eye twitch but I could feel it. I also get twitches all over my body. They don't hurt and actually I am used to them. I don't know what they are but I know when I am tired or I have put too much stress on my body they become more frequent. They are weird but I guess it is part of POTS. I remember going to different doctors telling them that I have body twitches they thought I was strange. The only time they paid attention was when they thought I had MS. Well, it turned out to be POTS. Christine

Well, I agree with all of the described symptoms. I am sitting here because I can not sleep. My heart is racing. I can feel my heart beat even in my toes and finger tips. I keep going to the bathroom to empty my bladder. I haven't felt this bad in a long time. I almost wanted to go to the hospital. My chest felt really tight and I had a lot of pressure. I never have had that symptom before. This tight chest and pain really scared me. Usually, when this happens (heart races), I am up for days. I get very little sleep because nothing can stop this. I am very restless too. It is nice to know that I am not alone on this one. Christine

India, I believe hormones in general play a big role in POTS. My symptoms do get worse during my period and also when I am ovulating. During this time I have learned to easy up on my schedule and get more sleep. I am tired anyway due to my period. My temperature gets really crazy too. Usually a week or so after my period I feel better. I wish I had more answers for your questions but at least know that you are not alone on this one. Take care, Christine

Nina, Thanks for the information, I can see that this has been addressed before. Christine

Linq, No problem, I really understand and I hope you feel better soon! Take care, Christine

Hello, My family is planning a Vegas trip and I have some mixed feelings about going. I did fly to Florida in February and the way down was fine. My return flight I became very sick and ofcourse it lasted awhile. I did read that flying is not recommended for people with POTS. I would welcome any advice. By the way, this forum is great and I am thankful it is here. Thanks, Christine

Linq, I am in the same boat as you. I have recently gone off of my medication to try and get pregnant. I didn't realize how much my medication helped me. Now that I am off my medication I had to change my lifestyle even more. I made sure I get enough and consistant sleep. I am trying to eat better and ofcourse I keep hydrated. I am more aware of my body now since being off of my meds. I can tell when I am going to have a bad spell. I also wear support stockings that help a lot. I stopped trying to do everything, basically I treat my body very carefully. This has helped but I know it won't fix everything. When I was going off of my medication, my body was in shock and I too have experienced being tired and just wanting to sleep. I know this might sound weird but I do believe in mind over body. I keep telling myself that I know this is hard on me but I really want a baby and if this is what it is going to take then I have no choice. Also, once you are pregnant you can always go back on a low dose of medication if your health is at risk. I do understand and I hope you start feeling better soon. There are somedays that I am ready to give up and go back on my medication but I feel as if I have to give this a chance. My blood pressure drops and my heart rate has increased again but like I said earlier, I don't put any extra pressure on my body. I let my husband do all of the lifting and he is helping more around the house. Before, we decided to get pregnant we sat down and talked about how he will have to help me more. I have a wonderful husband who is really caring. He doesn't like to talk about my POTS but he has been a blessing. Best of luck and if you need to chat you can email me. (jcwagenlander@aol.com) Christine

Morgan, My neurologist told me that some of the pain might be because I have a lesion on my pons and it is affecting my nerves. I had a complete nerve test on my arms and legs and I have some nerve damage in my legs (front area below my knee). They really were not sure if it is the POTS or the lesion on my pons. Anyhow, I hope you find out some news on your next appointment. Christine

Thanks Ling, I feel the same way and I want twins also. It doesn't run in my family but I thought it would be nice to get it over with. My doctor at the Cleveland Clinic wanted me to try a drug free pregnancy and now I am completely off of my medication. I told myself that I have to try this first and if it doesn't work then I know that I can go back on the meds. Good luck and hang in there, you are right it will be worth it in the end. Christine

Leah I usually have leg pains in the evening while I am in bed. I do believe they run on a cycle due to the fact that certain times in the month my pains are worse. Thanks for the advice I will try it. Do you feel like your skin is crawling when you are trying to fall asleep? Sometimes I think my heart rate must be up because I feel the beating all over my body (fingers,limbs etc..). Thanks for responding. Christine

Katherine, I wondered about the pains and twitches because my doctor really didn't think much of it. My doctor thought I had MS because a lot of my symptoms mirrroed MS. I am still learning about POTS so thanks for responding. I will check into vitamins. Christine

Hi dawn, I also feel this way. Sometimes when I am fixing my hair or putting on my makeup I have to sit down and wait a few minutes. Also when I clean the house I need to take breaks. I guess this is a common issue for people with POTS. I have learned to take breaks and it seems to help. Christine

Tearose, My blood tests show no sign that I am lacking in potassium, but it is worth a try. Thanks, Christine

Thanks Aprilmarie, My doctor from the Cleveland Clinic told me that they would like to try a drup free pregnancy but if I had problems that they would put me back on the medicine. My gyno told me that is was ok to continue taking my meds. I have be told 2 different things. I am doing ok, I have recently quit my job as a special education teacher. I know that I couldn't be off of my meds while working a full day. My job was also very physical. At times I had to restrain children who were my size or bigger. I was told that I have a 50% chance of feeling better while pregnant so I guess I am hoping that will happen. If not, I know I will have to go back on my meds. Thanks for responding, it is nice to hear from people who have been through this. Christine

I tend to get leg pains from my knee down. It hurts so much sometimes that I cry. I think my hormones play a part in my leg pain. It also seems that I am on a cycle. I will be unable to sleep for a few days then my leg pains begin. My leg pains last for about 3 days then they are gone. After that I crash and my body is very weak. I also get twitches or that is what I call them throughout my body. They just come on for no apparent reason. My twitches do not hurt. Does anyone else experience any of this? Christine

Thanks Dawn, My doctors weren't very helpful with this infact they did not want me off of my medicine but I know that I have to start trying soon. Thank you for responding to me. It is nice to talkt to people that have been through it. I will keep in mind that I need to keep my fluids up. How wonderful, 2 beautiful children. Christine

Dear Katherine, Thank you for the information and yes, I am new to this and actually I have a lot of questions but I am still dealing with the fact that I have POTS. Thanks again, Christine

My husband and I are considering starting a family and we have some concerns. I currently have gone off of my medication to try a drug free pregnancy. I would welcome any advice on pregnancy and POTS. Thank you , Christine