momofpreciousboy

[try ice chips. sonic here has wonderful little pieces of ice and you can buy it by the bag here. Pedilyte also makes frozen pops--you have to put them in the freezer yourself. Geez it is so hard to win with this blasted POTS. Hope you are better today. JenniferTX

[sorry. I know how it is and that unless you have them-no one could understand--you really think you will die. The beta blocker has lessened them for me. I know they are just TERRIFYING--nothing helps during them. Wish I could help--only can by understanding the intense fear and out of control feeling you get. Jennifer TX

I get them too, and am sick of going to drs, as they say nothing is wrong. My latest is that my optoneuro eye appt was completely normal, and I felt pretty nuts being there. I feel there is so much wrong with my eyes-floaters, shaking, pain, muscle pulling, you name it. Whatever, I think I have just decided that I have a wacky body that has wacky symtpoms-which can be anything, and that is just the way it is. I am going to try not to worry about them and just know that it is propbably just something going on with ANS. I have accepted that my body is very different and will not work or act the way as most people's. I am really trying to accept all these weird sensations as part of POTS and not think twice (well you nkow what I mean) about them. I notice so many times that if one thing is not goign on it is another. My eyes were better, and then it came back, but the sensation is a little better. It is like the symptoms cycle. It is like your body tries to drive you nuts! This is just the way I have decided to deal with it, because it is so time consuming to go to drs and they do not know a thing. I have also decided that if I am going to go to a specialist that it is going to ahve to be POTS knowledgeable. Otherwise, it is a waste, to me. My cardio said there were 4 neuros that were familiar with POTS that he knows, and if I need to go to one, it will be one of them. If I have a bad day, I just try to go back to the basics-fluids, exercise, salt, and remeber the things that have helped and make sure I am doing them. It is a lot to go to school. Physically and mentally. As for the incompletes, I just try to remember people have no idea as to what we go through, really no one does, except us. That is just the way people are. I hope things get better, and just remember you are doing a lot. It is a lot to manage your health and school. Jennifer TX

I use a recumb bike. My cardio says the rowing maching is the best, so I am going to get one. Everytime I exercise, it brings on symptoms to a certain degree. Sometimes much worse than others. I just try to so what I can. I think it is well worth the effort. I used to only do 2 min, but now do 40 min. I am so much better than I was over the summer. I have days where I feel great now- with few symtoms, and am going to turn in my wheelchair. I think exercise and the beta blocker has made a huge difference. Jennifer TX

Hello. I am wondering if there is a difference between the jobst hose you go and get measured for and buying them off the internet. Measured they were 120.00, on the internet it looks like 70.00s. My dr specifically said measured, but if it is the same thing.... My hose just say med on the label, so wouldn't it be the same? But, I think the box looked differently--which makes me wonder. Any ideas on the cheapist places to get them? Thanks, JenniferTX

Do you notice that you feel better in terms of your pots symtoms since you started running? Does the resting hr make any difference in how you feel? I guess what I am wondering is if we were in top shape, would our symptoms mostly disappear? Good luck and be proud of how far you have come. JenniferTX

[Are you supposed to take the beta blocker at night? I thought it was important to take them in the moring so that they do not lower your bp at night. Jennifer TX

Jennifer, Sorry this is happening to you too. I am still trying to find answers. I was told it was sensory nerves-small nerves that do not show up on some of the tests I was given. I have numbness or loss of sensation everywhere. Absolutely everywhere. Does anyone know if this gets better-will feeling return? I have a few times where I feel more, but really cannot feel hot water on my legs. It started off in my face and right arm-mostly happended during spells. Let me know what the neuo tells you. JenniferTX

Let me just say that I have to constantly work to keep up the bp--salt, drinking all the time. When I was so sick, I could not even get on the computer. I could go for days without sleeping and actually felt better if I did not sleep. The sleep apnea if that is what it is is terrible. I never thought I would wake up alive. It was just awful and would wake me up. When I would start to go to sleep, if would feel like my chest would just sink and sink and I could not inhale. I really felt like I was fading out of this world. Just horrible horrible times. It really could not have gotten any lower. Maybe you will find that another beta blocker will help. Best of luck and I hope you find someone to help you. It took me forever. JenniferTX

Don't have time now to type much. Go to search and look under my posts under momofpreciousboy. We sound very similiar. I too would wake up gasping. and could not breathe. Complete with not being able to swallow, throat tightning, ect. What really helped me was propanolol. Something about adrenaline causes muscles to constrict or it does something with the oxygen in the muscles. Adrenaline release was coming from stress of standing/ heart rate. I will try to reply again soon. JenniferTX

I have a lot of problems with my eyes. Is the something that seems not right anything like this: If you close one eye, it seems normal, and it is the two working together that seems to be not right? It seems this way to me as far as my vision goes. No idea as to what it is. I have all the symptoms you list and floaters, swelling due to increased fluid. I have noticed when I am exercising that my vision clears up and if I get startled that it clears. Maybe due to an increase in bp?? I am waiting on a opto whatever neurologist for over 2 months now. It has been the neuro did not send the referral, and the neuro says they did and just not hearing back from them. Fixing to find another one. I also have a blurry spot that is more consistent. Good luck. JenniferTX

So who is good Poohbear? Which ones are ok-in your opinion? Is Dr. Grubb really worth seeing? If you have been told you have POTS and are being treated with the few treatments that are common here, what is the point of going to see him-what is it that he does that is different? I guess what I am asking is what do you guys learn from him? Is it the specifics-as in what parts of autonomic trouble you have-exactly what? Is is ruling out everything? How long of a wait is there usually for a new patient? I too, would love a second opinion. And more answers. Good luck. I too am beginning to wonder if it is just best to see Dr. Grubb. JenniferTX

Well, thanks you all. The aunt and family I am talking about is actually my dad's side. I have been told I have a murmur sometimes. But told I do not have MVP. I have always had low exercise tolerance. Who does the genetic test for that? Thanks, Jennifer

Hi guys! I have POTS and there is an aunt (has been told it is MVPSyndrome ) that has the heart rate in 120s, trouble breathing, and two of her children have some similiar symptoms and so does another aunt's child. Their mother (my grandmother) had a lot of chest pain. When I try to research what causes this, I come up with familial dysautonmia (but no history of jewish in the family-so I do not think it is that). I understand that POTS is a collection of SYMPTOMS not a diagnosis and therefore something is causing that. Has anyone found what it is when there is a family history--for example Chiari malformation, a gene, something else? The specialist I go to said that POTS only occurs in the population with "small hearts." Is it a genetically small heart that could be passed along? I am trying to do some research as it bothers me that I do not know what is causing POTS and I have and want more children. I am just wondering what others have found causes POTS especially in the family. Also, I was told that POTS, MVP syndrome, Chronic orthostatic syndrome, neurally mediated syncope were all the same thing. Is that the general understanding of you that have been to the research centers? Thanks, JenniferTX

Good luck with your visit -just wanted to say that I went to a POTS dr, and my symptoms list was a page long and I was told it was "intimidating." Anyone else had that problem? I really felt like there must be something else wrong if a POTS dr says that. It still bothers me to this day. Good luck and from what others have said-he sounds nice. But I was expecting way too much from my visit. So keep an open mind and keep expectations low so that you will be happy and not disappointed. Jennifer TX

Can beta blockers affect desire? Jennifer TX

Oh dear. I better not get my records! I saw a couple of really terrible drs. But even the dr I thought was the best had some mistakes--I only have his. I think this is terrible they can do this. They should only be able to state facts and put their ideas in a special section. No telling what is on our charts! JenniferTX

I have read some of your posts, and find it interesting because we do have some similarities. Especially with fullness of ears, unable to hold neck up-it prefers to go to the side. either side. I spent forever trying to figure out the neck pain-physical therapy, manipulation, chiro, meds. Nothing helped. Finally, I found that the beta blocker made the pain go away. From what I understand is that the adrenaline from the racing heart causes the blood vessels to constrict, which in turn does something with oxygen involving muscles and causes them to tense up. I think my neck weakness is due to the muscle fatigue from this stress. It does not bother me everyday, but most at some point and affects my neck and area where muscles go into skull, and will go into my shoulders, chest, underarm area. It is called the coat hanger effect. It is the one POT symptom that really limits me when it is bad. While I do not see this problem mentioned very often at all, the POT specialist was quite familiar with it. I will discuss it here when I go back, as I have many questions about it. I was on Toporal and it did nothing for this pain. But propanolol did away with it or does to a certain point. I am hoping he can tell me why. Just thought I would let you know that POTS alone-as far as I know causes me severe neck pain. I hope you are better today, and try to take some comfort in what the drs told you. I know how hopeless we can feel and I understand that, tomorrow is a new day. If I am having a bad day, I try to remember that- as each day I feel different. Jennifer TX

I am too in the same boat. I want another child, but uncertain how I would surivive without propanolol. I do not know if I could continue taking it. I am waiting to see the POTS dr, and ob, and will discuss all this with them. I really do want another and on a good day, I feel I can do it. I remember feeling better during the 1st pregnancy. I did terrible afterwards--I thought it was the c section--I did not know I had POTS. Not sure what I will do this time. I cannot take Florinef, so the dr told me to raise the bed 4 inches, and it would do the same thing as florinef after this for a month. Something about your body thinks it is upright, so liver or what ever it is produces something that helps you retain water. that is what I can remember--so just ask your dr. Pregnancy is a hard decision, but knowing what is wrong and the right dr, I wonder if it would not be easier this time. I will more than likely have another. Just not sure what to do about propanolol. --Oh, and I think mine is hereditary so, that is an issue--especially if it is girl. Jennifer TX

Thank you so much for posting this. If you find others, could you please let us know? Thanks again! JenniferTX

I am sorry. I was there were you are not so long ago, and it is just the most helpless feeling--the ER couldn't help, cardio did not know what to do, I just had to wait over a month to get to a pots dr. It is so hard when even the drs do not help whethter they want to or not. I nkow what you are going through, and I am sorry and know how helpless you feel. I just started drinking tons, doing what little exercise I could do, eating when I could, praying, it is just so hard. What really helped me was the right beta blocker-not perfect, but ok. This disease is so hard. One- for you really feel no one can help. One thing I have learned is you have to help yourself-you have to eat, drink, and really I think exercise has helped immensely. Compression hose too. I think exercise will kill me all the time (the chest pain gets to me), and it is the last I want to do, but even if you can do 5 min and start there. Something to keep your body up. take care and just know I understand and wish you a fast week. It is so hard when all you do is live for the dr appts. that was all I cared about-hoping someone would help. JenniferTX

Hello again guys. I was on Toporol (sp?) and then switched to Propanol. After suffering for a year with neck pain--it was gone thanks to the propanol. From what I get-the neck pain is caused by adrenaline. Do any of you have any ideas on what causes the adrenaline to be so high? Is it just the orthostatic stress that is causing adrenaline to be high or could this be part of what is causing POTS? My urine catecomines or whatever it is have been ok. Also, lately the propanol has not been working as good. Does your body get used to it and you have to increase your dosage? Mine is 20mg 3xs day. there is a family history of an aunt that had to lay down and could not get up that had mvp, and seems to have similar symptoms as I do. I am trying to see what the relationship to adrenaline is because it causes me so many muscle issues. any ideas, please?? JenniferTX

Thanks guys. I have not had pulmonary testing. Would this show if the muscles were not getting enough oxygen? They pretty much ruled out heart attack, Autoimmune, and found out quickly it was pots, because I kept bugging them. So I did not have a whole lot of testing-just cleared by neuro and internist. JenniferTX

Hi guys. Do you get chest pain when exercising? I get constant waves of chest pain that is wide spread throughout the chest region when I do the exercise bike. I am supposed to do 45 min -cannot see it happening!! I do about 20 min. But I start and stop. It is pitiful. But the chest pain bothers me. A lot. The strange thing about POTS is that many symptoms point to heart attack. I have been worked up and had the stress test (the one where they just give you meds to speed it up-not the treadmill.) But still with all that chest pain-you wonder. Just curious if this is typical POTS. Hope you guys have a good weekend. JenniferTX-I wish it would get cool-still 100 days! Tomorrow is supposed to be better.

I have noticed that a lot of us complain about nurses not being able to find veins for IVs. I have had a terrrible problem with this and wonder if maybe it is characteristic of POTS. They have had to get careflight to put in ivs for me before-and I have been told I have small veins. Any one know or have any ideas? Jennifer TX