hannahsmom03

Hi LindaJoy, It has been a while since I have posted here but I feel the exact same way. Unfortunately about everyday. It is so scary and I have questioned the doctors about it and they just say it is part of the dysautonomia or my MVP. I just do not feel like this is normal and it frightens me that this will only get worse. My throat always feels like there is a lump in it and sometimes my tongue feels thick and heavy. I know this sounds crazy to some people but it happens more often than not. I had ask this same question before also and wondered if anyone else experiences this. I would be curious to find out your test results to see if this could be something more.. I will keep you in my prayers..... Take Care Erica

Hi Bri, I am sorry to hear about your symptoms. Unfortunately I feel the same way but mine is mostly my left side only( arm , leg , hands) it is so scary and hard to tell anyone about I usually feel this way everyday and especially if I stand longer than a few minutes or writing or typing. I think the feeling in your legs may be the blood pooling , I know most days my legs are so weak and feel "heavy" My arms and hands feel like "jello" to. Having POTS and several other problems to is very overwelming at times especially if you have no one to talk to . But this forum has been wonderful and very comforting to know that you are not alone. Have you taken your blood pressure when you feel this way to see if it is low or your HR? I know for my self that can really make a difference. I wish I had more advice for you besides I know how you feel I hope you feel better soon. God Bless, Erica

Hi Tammy, I am also taking Florinef .1mg . I have only been on it for a couple of days to raise my BP so I can start taking my Beta Blocker (Toprol Xl) again. I have also had weakness and mild headaches. I posted a question about the side effects of this medication a couple of days ago and everyone seemed to have little side effects except for ( fluid retention, puffiness). I am very sensitive to meds since I never really had to take much until now so I have noticed certain changes. I am hoping this will raise my BP soon lately it has been 67/47. So I am not sure if the weakness is the med or my pressure. I am glad to hear that the "yuckies" seem to be getting better , I know that for many people this medicine has been great for that. I hope to be one of those lucky people soon. Take care Erica

Hi everyone, Last night I had a horrible experience after eating what I thought was Gluten free bread but apparently it was not. My heart rate was really high , could not breath well and felt extremely tired. It was the strangest feeling. I was really hoping this kind of food would not bother be because I love my bread I was wondering how these things (breads, cereals, pizza,everything good ) affects others. And what you substitute for these things. Any thoughts are welcome. Erica

Thanks for all of the helpful information. My doctor is about 4 hours from where I live so I see him next week . I am curious to see what my blood volume level is and my cortisol & sodium level. In March when I had my sodium checked level checked it was on the high end 142. I am just confused because I was having all the same symptoms I am having now but not sure why I should be on a high sodium diet besides raising my blood pressure. I have always had a problem getting rid of fluid after having toxemia during my pregnancy3 years ago. When I was a teen I had polynephritis which they think might have caused some damage to my kidneys and caused me problems during my pregnancy. It is hard to pinpoint a cause but in time with the right meds maybe my quality of life will increase I have to say I am so thankful more my doctor , dysautonomia is so hard to diagnose unless you have a physician that understands this illness. It is comforting to know that you are not alone and other people understand and feel what you are going through. Joining this community has been a blessing to me Erica

Hi, I also have this feeling everyday . It is difficult just doing simple things like going grocery shopping and standing for long periods of time. Driving concerns me because my legs feel like weights and sometimes just go "numb" I wake up this way and go to bed this way. It is very dissapointing because I have always been so active (walking , pilates) but now I find it difficult to do any of those. What makes it harder is not keeping up with my young daughter they way I used to . I totally understand. I hope your day gets better Take care Erica

Hi Everyone, I have a question for anyone who has taken Florinef or knows any thing about it. I am a little concerned about taking it. This is the story. I had a reaction this weekend to Toprol XL 100mg. I took 25mg. to start with and had severe drop in BP 77/47 HR 47 and an extreme left sided migraine. They told me to immediately stop taking it and call this morning. When I talked with the nurse I told her how I am retaining fluid in my hands and feet, and she said it is probably from the high sodium diet. My doctor wants me on .1 mg of Florinef daily to increase my BP and next week start back on Toprol Xl 25mg. I am not pleased about that because of the side effects. But I am concerned about this Florinef. She said it has something to do with my cortisol level. I apologize for being "long winded" this is all new to me. I welcome any information and advice on how it is helped others. I have read about this medication and have medical proffesionals in my family that are concerned also. I understand that this may effect everyone differently but sometimes it is good to know what to expect. I am desperate to not feel so dizzy and "out of it" all the time. Maybe this is what I need ! God Bless , Erica

Hi Mary, I know some days for me it feels like I need one. Like I can't get a good breath and I can not think well. Its like a "brain fog" . It is a really scary feeling. I have been feeling like this for over a year with no DX and it is hard to explain to some docs without them thinking you are having an anxiety attack. There are so many symptoms that tag along with this disorder. I am not sure about anyone else but some days I feel brand new symptoms that I have never felt before and some days I feel good. It is difficult to explain these symptoms to people who do not know about dysautonomia. I know the best medicine is to be your own advocate and teach people about this disorder. My family are a bunch of nurses (mom, sister, aunt) and no one had heard of this disorder. Of course they all have mitral valve but not an autonomic disorder. I am learning new things everyday about this disorder and thanks to all of the great and knowledgeable on this website. Take Care Erica

Hi Linda, I also have this problem, and am feeling like my throat is tight and closing in now. I was just about to post a question about this. If anyone experiences this feeling alot ( hard to swallow, tightness in throat , feels hard to breathe, tongue feels like its thick) it is really scary and I am wondering if this is just part of the disorder. I also have food allergies ( peanuts, shellfish, and tree nuts) it is really uncomfortable to feel this way and not be able to do anything. I wish I had more positive things to say besides I feel this way to . I hope this gets better for you and for all of us. Take Care Erica

Thank you all for the great information. I appreciate the information that this wonderful website offers to a newbie like me. Have a great day

Good Morning , I wanted to know if anyone with POTS feels strange (sleepy, shakes) after eating sugar. I am not big on sweet stuff but I noticed that when I do eat sugar every once in a while I feel like I am going to go to sleep. I know that sounds so strange but I did not know if that might be a trigger for people with POTS. All of this is new to me and I am trying to avoid anything that makes me feel worse. Especially right now since they have taken me off my meds because of the side effects. I am trying to eat right , drink alot of fluids , and take in a lot of salt, but I feel like I am blowing up like a balloon I noticed also a bad feeling with caffiene, cereals, breads. My husband (god bless him) has kept me well stocked with Pickles. For some reason they have become my friend The more salt I eat the better I feel. Hope you all are having a good day. Any thoughts are apreciated God Bless, Erica

Hi Mary, I totally understand how you feel! It is a daily chore for me to stay awake and keep moving but luckily I have a 3 year old little girl that keeps me busy. Some days I am not sure how I can get through the day . I have noticed that drinking alot of water and keeping my mind ( even though it's fuzzy sometimes) busy with reading or playing with my daughter some days it is easier for me to go to sleep at night. I can't wait until I have more energy and I know you all do too! Take care of yourself! I know this is a daily struggle for all of us that some people do not understand . I feel lucky to be a part of a group that support each other and give each other hope God Bless You, Erica

Hi Sophia, Thank you for your opinion. I wanted to know the same thing. I asked my doctor and nurse why I was given Toprol Xl at first. They said since I have POTS, Mitral Valve and Neurocardiogenic Syncope I needed something that could regulate my heartrate when standing. I am confused because my normal blood pressure is 80/50 heart rate sitting and lying can be as low as 40's and 50's. But when I stand up my heartrate increases to 130 or above. I had the tilt test last week and passed out within 18minutes . They stood me up and my heartrate went to 158 and within minutes I passed out when my blood pressure and heartrate dropped in the 40's. I was suprised about the dosage they wanted me on in the begining. I was just diagnosed last week but have been suffering with symptoms for over a year. I feel desperate to feel somewhat "normal" again and thought this might be what I needed. I was supposed to take 50mg 2x daily . I was not sure of that so I started out at 25mg daily and started having severe headaches. They were totally suprised since they give this med for headaches also, and they told me to stop taking it. I am just not sure what to do. I am drinking 64 ounces of Propel a day and taking Thermotabs and nothing is really changing. They told me to call back on Tuesday and they would see about changing my medications. I just feel really sluggish and my vision is blurry all the time. I feel a constant weakness in my legs and arms and shortness of breath . I was hoping this medication could help this but maybe I will have to try a few things until I find the right medicine for me. I am thankful for the information on short acting medication and I will definitely ask on tuesday about that. I feel so thankful to have people to talk with that understand my symptoms and that are so knowledgeable about POTS. I appreciate any thoughts take care Erica

Hi everyone. I am newly diagnosed and wondering if it is normal to feel dizzy and lightheaded all day long. Nothing seems to help, (salt pills, Propel, rest , ) I also wanted to know if anyone has experience numbness on just the left side (leg, feet, hand , head) They say this is all part of the MV, POTS but I am just curious. I know I may be asking alot of questions and I apologize. This is all new to me. Thank you all for your advice.

Thanks Carmen for replying. Honestly I think it was the Toprol that gave me severe headaches. I would not get them until after I took the medication. Also I was concerned about taking it because of it lowering my blood pressure and heart rate. Both of mine are already so low its crazy, And then when I stand up my heartrate goes to 130. I think my body is just really messed up right now And I am so depserate to not feel so dizzy and disoriented all the time I will try just about anything. They told me to call back on Tuesday after the holiday and we will try something else. Thank you for the warm welcome. Have a great day!