momofpreciousboy

Ok, I won't comment on the fatigue problem-as I have the opposite problem right now. I just wanted to say-my you can do a lot. . I have a lot of chest pressure-feeling like it is constricted-like I have a tight vest on and cannot take a deep breath or even just breathe a lot of times. I also get the severe inward pulling of the head neck and shoulder area. The way the dr explained it to me was that it is the adrelin (sp) that your body releases (something that the ANS does) causes your muscles to tense up. I have so many problems with this. Is yours where the top of the shoulders and neck meet up by the spine--the worst? Not sure how to make this stop--duh why didn't I think to ask? I had ask my husband to tell me again just so I could write this. Jennifer TX

I cannot take Florinef. I was told that raising the bed 4 inches would do the same thing that the medicine does. Something about something the liver makes makes you retain water and it only does this when you are upright, so raising the bed 4-6 inches tricks the liver and it keeps making whatever it was to make you retain water. That is just what I remember the dr saying--it was something like that--. Whether it works or not I have not tried it yet (except for last night and it is supposed to take a while too.) My only problem with the idea is that wouldn't your brain need a break and be level with the heart, so you can get good blood flow? Jennifer

I am really wanting to go outside, and was looking at the cooling vests online, and really it does not seem to be an ideal solution as they are so bulky looking. We called all sporting good stores, bicycle, running stores and no one has one and I hate to order one on the internet to look at it. If someone has one with ice pack type of thing, and it is not too bulky, could you give me the brand? Have any of you made something yourself that stays cold for a period of time? I am in TX and still have a month of hot weather to go. Thanks, Jennifer

Finally the long awaited day tomorrow. I go to the cardio tomorrow and wonder about some things. Do you guys get everything from your specialist--wheelchair permits, IV prescriptions, whatever else you need from the autonomic specialist? Is there a list of questions anywhere to ask them? I had another setback yesterday night after feeling so good in the afternoon. I cut my husband's hair, and I think it triggered something-I was holding my neck down and to the sides to cut. Woke up after less than a hour and dizzy, congested feeling, feeling that my heart was fixing to start racing, lots of trouble breathing, need to go to the bathroom, neck very uncomfortable, and I get so scared during these times. I would swear they are panic attacks--but I guess they are presyncope spells, from what I understand. I actually asked ER about that and they did not think they were panic attacks--can you believe that??. Anyone know the difference? I really think during them --how do you know you are going to take your next breath if the ANS is so messed up? Also, what keeps your heart and bp from getting so high it does not kill you? My bp was 168 over something. I mean if it is not working right--really how do you know? Do you guys all have these thoughts? Way off subject. I am in a huge mental fog--which is not good as I have to do paperwork and figure out all the questions I need to ask. I tried to proof read and it is so hard to focus --do you guys have that problem too? It is like you cannot even think. Any ideas would be appreciated. It will be so nice not to have to explain what POTS is to a doctor. Thanks, JenniferTX

I am wondering something. I had a few symptoms years ago (never found out what was wrong), then was in a rear ended car accident and since then, I have had enormous problems. I really believe my symptoms are being caused by something in my neck. I am going to an alternative dr--D.O. that does GENTLE manulipation--nothing scary at all or rough-light touch manulipation, and it seems to have helped greatly. I have only been 2xs. I can get the feeling back in my arms, legs, and neck afterwards. He says that I have compression in the neck/head area. Are there any of you that have had the same issue or suspected that it was your neck? Thanks Jennifer TX

Well, if you get desparate, and I am only half kidding, I think you can get those bags from vet supplies online. I wish we could do it the way they do animals-just put it under the skin and it slowly absorbs (it does not have to be in a vein-in animals). I had to do this to my cat and it took me forever because I could not bear to stick the needle in him. If we could do it that way, it would be easy although it would be a sight (those with animals who have had this done will know what I am talking about). jennifer tx

Poohbear, You are kidding!!!! I did not know that!!! I am still laughing. That is what we need--it is perfect!!! You guys are so funny!!! I would ask just to see the drs face. I have a terrible family dr. I am still laughing:--laying down wheel chair, cooling vest, compression hoses- Thanks for the laugh JenniferTX

I have been told by the neurologist that I will probably be put on an exercise program. Techinically, aren't we exercising all the time with the heart beating so fast? (I know it is not the only muscle, but still). I am just wondering --how exactly is that possible? Wouldn't your heart rate just go higher and higher? I know the more I do and longer I stay up, it just stays right up with it. And really, is it ok for your heart rate to be high all the time? Doesn't it put a lot of stress on your heart, and everything that does not get its full oxygen supply from the heart pumping inefficiently? Is this what causes the neck and head symptoms--lack of oxygen? Getting off track. Do they monitor you at first or just give you a list of exercises to do at home? Do any of you guys go Dallas for treatment? Thanks guys. I think only people with POTS could possibly understand the way we feel. To have so many symptoms at once and try to make another person understand is just impossible. Jennifer TX

Well, I have corneal swelling and no one knows why. I take Lotemax a steriod eye drop for it and it works so good. I get a lot pain (like when I look around almost like muscles), pressure, several kinds of visual disturbances. No one knows the coorelation of it and POTS yet. I have a lot more docs to ask! JenniferTX Oh, the congested feeling, I get that too. I feel like I have a cold in my head, I get the fluid feeling in my head and ear. Do not know about that one either. I do not like the way that feels. I keep looking at the symptoms and I just wonder sometimes if I might have that Chiari malformation. I cannot have a MRI and that is how they would check, and I am going to ask about that. If anyone knows how you can tell symptom wise the difference between the two, I would love to know.

I finally got one so I could get out--It gets old at home. I could not go anywhere. Well but to the ER and that was in the ambulance . I dread it--and just hope I do not run into anyone. I did Sunday, and it was so very awkward. I will probably never get used to it. Just wish they would make a laying down wheelchair. That would be too strange though, but would feel great! Really though, it is better to have one. You do not have to use it, you could just have it if you need it. What do you guys do about pushing one? Do you have the ones that roll by themselves or the ones that you do it yourself? Mine gave me the one that you push yourself, which is fine as my mom goes with me. No telling what my hr would do if I rolled it on carpet or uphill. Do you guys have the parking permits? My dr gave me a wheelchair but not parking. Which is a problem because of the heat. It does not solve everything though as it is so hot here and I still cannot stay outside long. That is what really limits me is outdoors. JenniferTX

I really feel for you because you have children as I do and it makes it so hard. I do have those sinking chest feelings. It is hard to describe as they just feel like it just caves in. They greatly disturb me. I have had them at my worst times. I also get the arm going to sleep thing. I have had this happen while on the computer. In fact, we moved the computer to a bed so I can lay down and use it, as it seemed to be triggering the symptoms. I think it was my arm-holding it up was tensing up something in my neck while I used the computer. I do find that putting an ice pack on my neck helps a lot, try it, you have nothing to loose, and it is on one of tthe things that helps on the potsplace website. I hate that sinking chest feeling and will ask the doctor about that when I go Fri. Do you ever get Sleep apnea? The most common time I get this is when starting to dose off, but it has happened at other times. Hope things are better. I have also had the heavy legs too. Compressiion hose really does help. JenniferTX

1. Jennifer 2. 31years 3. POTS, NMS 4. found out about 1 month ago 5. live near Fort Worth, TX 6. at worst: trouble breathing, dizzy, trouble swallowing, heart racing to 170, numbness, neck pain, chest pain, severe chest and neck and head pressure, cannot move because of so much discomfort from symptoms, nausea, need to go to bathroom, not being able to drink or eat anything, feel like I am fading out, sleep apnea, loss of sensation everywhere, reflux during pre syncope, so many I do not want to type them all out 7. at best: nausea, vision problems, neck pain, headache that seems to pound with heartbeat-temporary, these are with compression hoses on and the list could be much longer. 8. Too new for this one. 9. What helps is beta blocker, hoses, ice pack on neck, making sure I eat and drink enough ***Just wanted to say that I researched my symptoms on the internet and tried to tell the drs it was POTS, no one would listen, all thought I was stupid--that is an internet diagnosis. Well, they put me in the hopital and ran all these tests and last one was tilt table--guess what? I bet that dr felt a little funny about telling me I had POTS.

Talking to the fire department might not be a bad idea, as they told me to let them know what it is anyway. I feel bad because it is volunteer. I need to donate some money to them, since they have been so nice. Although I am sure they think I am a bit crazy by now . But when you are in that situation, what do you do? When you are laying down and your heart rate will not go down, you cannot move as it only goes up, so there is nothing you can do but call 911 -- Well before you find out what it is anyway. I am going to Dr. Levine in Dallas this week. I wonder if they can write something so I could get IV fluids or something? My family dr will not do anything, my present cardio will not do anything, so I am left with nothing from the time he referred me to now. It is so terrible because you really have no options. The last time I went to the ER, they said they can repeat CT scans, but there is nothing they can do. It is a bad point when you are that sick, and the ER says there is nothing they can do. It is so hard. JenniferTX

Sorry you are going through this too. Dr. Levine is in Dallas. I was referred to him. He is a cardiologist with an interest in POTS. I have found no other doctor in this area and I have been looking hard! I am using a doctor in Fort Worth for alternative treatment, and it is too early to tell if it is going to help. JenniferTX

Wow, I was thinking I am probably crazy for doing that. Thanks for making me feel better. The scary part is going out by myself with my child, which I have not attempted to do and will not try until I get more control over everything. What do you guys tell the EMTS so they understand? This is such a crazy life--truely totally different way of life before this all happened. Thanks, Jennifer

I am newly diagnosed, but what has helped is : Beta blocker-helped with pre-syncope symptoms, allows me to sleep-I was running high from all the adrenlin (sp) rush. That really helped with the fear during the episodes. The compression hoses are a wonder. They help with the chest pressure/pain, neck, and allow me to stay up longer. Drinking all day. So far that is all that has helped, my hr is still high. I have a long ways to go and will update as I see drs. Jennifer TX

I am curious to how many times you guys have called an ambulance? I have called 4 times during pre-syncope spells---I know what is going on now. They scare me to death-extreme racing-up to 170s, all over shaking, bp extremely high, sudden tiredness, need to go to bathroom, muscle spasms all over, chest pain, inability to swallow, numb arm, numb neck and others I am sure. So hopefully we do not go through this again, but would not hesitate to call again, if it got really bad and I was by myself. Although this last time they just asked if there was anything that would slow it down -my heart rate was staying in the 140s. I gave them the magic answer--iv fluids. If I could just do ivs at home. I am embarassed by having called them so much and am really hoping I am not the only one out there that has done this. Jennifer in TX

I was just looking for a cooling vest. Are there any that you guys know of that work that you wear UNDER clothing? I cannot imagine wearing it outside clothing along with the compression hoses. I already feel like a nut in a wheelchair, with those heidious hoses with 3 year old in my lap, with my mom pushing me and pulling a basket. It is so embarrassing. What is worse is when my 3 year old pushes me. I gotta post that one sometime. Thanks JenniferTX

Hello guys. I am fairly new here -diagnosed last month and still trying to figure out stuff. I am wondering what symptoms make you guys use wheelchairs? I am using one so I can get out of the house. The intense pressure of standing up is what gets to me. The longer I stand, the more and more uncomfortable I get--neck pain, trouble breathing, trouble swallowing, chest pain (although beta blocker has helped that), chest pressure, I guess I feel that there is no blood above my heart--I cannot think, blurred vision with white spots like coming in from the sun. My heart rate runs 120-140 standing up. When I stand still it climbs too. Has gone in the upper 160s. That is what I can think of for the moment. Does this sound like what goes on with you guys? Thank you, Jennifer in very hot TX

I am new here. I am in the Fort Worth, TX area--very hot 100. I am having a terrible time, too. I cannot go outside or my pulse just starts going up and up and I think I will pass out. It usually sets me up to have a pre syncope spell later on. I have a young son, and we have been unable to do a lot. Where do you get cool vests? Any other tips? What would happen--would you pass out and wake up? I have a 3 year old and it is scary to go outside, as I am afraid I will not make it back. Thanks, Jennifer

I am a mom who is practicing extended breastfeeding. Your local La Leche League group should be able to refer you to a consultant. There is a book that they use it is called Medications adn Mothers' Milk by thomas hale, PhD. I too have the problem of getting medicines because drs do not know about them. Quiting nursing while this POTS stuff is going on just adds to problems to me. Jennifer

Hello. I have just been told I have POTS and really am not doing well. What is the best route to take? To go to the research centers? Find doctors in the area with interest in POTS? Can anyone tell me the best dysautonomic centers and doctors? Does POTS cause a lot of neck pain/stiffness that is worse when standing? Thanks. Jennifer