momofpreciousboy

I did get the rabies shot because I was going to be working with bats. It was relative painless and goes just under the skin on your arm--although I have probably had POTS my whole life, I do not remember if it did anything to me as I did not know I had it. I would not know who to ask--sorry. JenniferTX -- Maybe look up the package insert for the vaccine.

I know. I felt exactly as you do. It was the same way for me, only I am female. And a mom. Things got better for me fairly quickly after I got the right bb--we were all at our breaking point. The stress this places on your family is tremendous. My child is totally different since I have been better. you will get better--you have to think that. It is hard, hard, hard. Jennifer, TX

Hello. I did a search, and looked at the past posts and really did not find a lot of people have swelling. I wear the 20-30mg full hose. I noticed my legs were swelling by my knees and above them. I have also been noticing my hands feel tight. Any ideas? Is this POTS? Could it be from drinking too much and salt (although I do not think I eat that much salt.)? I just hate all these symptoms. I could write a book of just symptoms. Thanks, JenniferTX

Does not make a difference for me--which always surprises me!! Especially since I thought that bp was making me feel bad. I have wondered this too. JenniferTX

I too live where there is not a lot of help. I also went into the hospital only to be told everything is neg. It is really hard. You have every symptom and every neg test-so they just say you are fine. Lucky I had a cardio who stuck by me even though he had no idea what was wrong. Plus I did not even have the tachy problem since they kept me on a drip!! That was starting to get to me as I did not realize that fluids would "correct" that temp for me. I was starting to think -geeze I am crazy. But then I realized that is what it was plus I ws on bedrest. All of my chlet what ever that word is they test for with the 24 urine test were done while I was on ivs, and I wonder if they were invalid since I was getting so much fluid. I am sorry you are having so much trouble. If one doctor does not work-get another!! That is my new motto! Really though, do not give up--they are out there. Can you travel to find better ones? Take care, JenniferTX

Hi Morgan: I do not think we have met. I am fairly new, and most of you know a lot more than I do, but do you ever think about going back to the basics?--I do not know what some of the things are you have, but when all else fails--trying liquids again? try some sort of exercise-even if only lifting small weights? salt? beta blocker? even a D.O. that does GENTLE -just light massage on your neck in areas that ANS could be affected? I mean-when all else fails and these things would not hurt you, maybe it could help? It is so different for me for the breathing-I could not breathe until I took the bb. My muscle problems were being caused by something the beta blocker corrected. Anyway, I am sorry you have such a hard time. JenniferTX

It is strange. I know nothing about neuropathy stuff. I have loss of sensation everywhere, these falling asleep feeling things, stuff getting really numb. What sort of test are there for neuropathy stuff and how bad is it? A lot of mine is sensory problems. I was checked for MS, and the large nerves in my arms and legs work-(some test my neuro did). Thanks guys. Jennifer

I have noticed that my arms, legs, feet, hands keep getting that feeling which is like when your leg/foot falls asleep. Complete with that tingling/sparkle feeling. But they do it all the time, even if I have not been laying funny or sitting on them but for a second. Does anyone know what causes this and if it is POTS? Thanks, and hope everyone is having a good day. Jennifer TX

My original dr is the director of cardiology, and is part of a huge group of like 13 drs, including EPs, and did not even mention them. I am assuming that he would not use them. Can you not take beta blockers when you are pregnant? I have a lot of work to do. Thanks for the suggestions. You really get stuck on what kind of doctor to go to. Do you just call and ask? My cardio and POTS cardio do not know anyone. Thanks, Jennifertx

Hi guys: I am doing much better, but still have lots of questions, and really do not have any doctor to ask (not even family doctor--mine is HORRIBLE (got to find another)). Do you just go to the autonomic centers to be diagnosed for the most part and have to ask questions to someone else? Who does your medication changes? Are the centers mainly research only? What is the purpose of them once you have already been diagnosed- it really does not seem like there is a lot you can do for POTS other then the standard things we all list on here. I went to a cardiologist that does research in POTS, and am left with really no one to ask remaining questions, and I would like to have another child, and I will need someone to answer questions and know what they are doing . The dr I went to is really not available- just does clinics every now and then, teaches and lectures and research. Beyond the list on the site, how in the world do you find a doctor? Does anyone know of a good doctor for answering questions, changing medications that knows the mechanisms of pots in the texas or surrounding states? Still trying to figure stuff out..Jennifer TX

Thanks guys. I just feel so dumb. I feel like I cannot think, remember or anything. At least I am not alone. Already do the coffee-it helps. I have a young child, so I am limited in the sleep solution. Thanks again. jennifertx

I just wanted to say thanks for the replies to my questions. It is so nice to have others that are going through the same thing to discuss this with, as so few understand. Thanks for taking the time out to post links. I am amazed at how much time some people must take to find links and help others. Thank you everyone and I am sure we all feel the same way. JenniferTX

I bet you are greatful!! I know the feeling when someone believes in you and cares. It is great that you found someone. Now you have HOPE. jennifertx

Are there any books that talk about POTS? Or do you just have to read the research papers? Anybody know if there is an easy way to get research papers nowdays? Or do you still have to go and do it the old way-find the journal and copy? I know sometimes a link will come up and you can access it for so long for 10 -15 dollars, but that would get too expensive. Jennifer TX

I have had that happen many times. I have trouble breathing off and on. Your description sounds a lot like what happens with me. What I think they are for me is pre-synscope spells. If you go to the potsplace and look under neurocardiogenic or whatever it is NCsomething, it talks about them. I will lay down when I feel like that and it sends me into seizure like episodes complete with racing pounding heartbeats, in which I have called the ambulance 4 xs in the past . Inderal GREATLY helps reduce these for me and reduces the fear. I can only speculate and I am not sure but from what I understand, the adrenaline makes the muscles tighten up and therefore could explain the breathing trouble. Needless to say it used to scare me the death (they still would, but the beta blocker takes that away for me) . Hope that helps. Also, breathing is one thing that is under the ANS, so it makes sense in terms of POTS. JenniferTX

I am just wondering how far you guys go to find out what is causing POTS or if there are a lot of people that do not know. I have been told I have POTS, and am uncertain as to just accept that or try to find out what is causing it. Thanks, JenniferTX

Jennifer, It is so funny, we have so many similarities. I have the same situation as you with a 3 year old and what to do when feeling faint. Your blood pressure readings are similar to mine. I feel really faint at the upper 80/50s range. How do you handle going out in public? Really what do you do when you have a child that young-I have not been in public alone because I am afraid of this. Just a trick if you are standing up, cross your legs. squeeze your legs and bottom together for 2 seconds. It works, adn is supposed to increase your bp. Also squeezing a ball in your hand is supposed to work too. JenniferTX

I am trying to figure out a bothersome symptom--it is hard to describe. You know how you feel when you wake up too soon and do not feel right at all head wise? I feel like that most of the day. I also have a hard time thinking, remebering, concentrating. It is almost like you have a cold or took cold medicine-you just do not feel clear/alert/just kindof out of it feeling. My eyes also bother me a lot when I feel this way (blurry, spots). Is this POTS or something else and does anyone know what helps? Any ideas on what is causing it-specifically (just blood flow??) I will wake up like this and it will last a while if not the whole day. I would appreciate any ideas. Jennifer TX

I too cannot find anyone to give IV fluids. I am searching out other options. One is a D.O. who does special pain management stuff. I am in the process of seeing if he would do it, as he does other IVs. Just an idea. I know it so hard to be in a situation where no one will help. It should not happen. My drs are the same way--do not call back, sense no urgency, when you feel like you just cannot take it anymore. Sorry, JenniferTX

Poohbear, I have had a lot of issues with my throat -not being able to swallow, throat tightening, most of which lasts under a minute. And food getting stuck. It is almost like the muscle stop working. I also get acid reflux during those times and if I am laying down, it just creeps up. They come and go. Is this what you are describing? Jennifertx

I don't know. I have always gotten lightheaded especiaaly when standing up (everything turning black). Fainted once. I started gettin miagranes when I was working in a lab. The fumes from certain solvents would trigger an attack with miagraines, feeling like I am going to pass out. I quit and for 2 years I felt terrible and never figured iit out. After I had my child i had a terrible time--so much pain, neck pain -did have a c sect, but it took me forever to recover, and I think now that this probably was going on. Then, car wreck--started it up big time, and after continuing to get treatment for injuries, and stuff did not add up, I was diagnosed (it was not nearly that easy, just briefly what happened). I had so many weird symptoms, and no one could explain them. During all this no one knew my heart rate was high except when we called the ambulance and it was high--they just said probably anxiety. No one ever knew until i figure out that it was high all the time that it was high. Funny thing was was that I had no anxiety especially from the wreck as it was minor. So I have events in my life that seem to go with me feeling bad-"triggers" and never knew, but I think i have had this forever as I have always been a little different--hypersensitive, low exercise tolerance, lightheaded. There is a family history on one with MVPsyndrome. I was told that the people who get POTS are ones with small hearts--weird but could explain the mostly women get it thing, as men generally have larger hearts. I wish we had a dr to moderate this site. I would love to get a hold of all the research papers and see if they explain this stuff better. Anyone do research on this? I would --just time issue-I have a child. Jennifer TX

Eating has been hard for me if not impossible at times. I am frequently nauseated. There are times when I do not even think to eat--I forget to eat because I am not hungry and nauseated. I eat a few bites and I get full very quickly. During the really bad times, I just drank milk shakes. I could drink them and the dr said it was better than nothing. It was showing up in my blood proteins that I was not eating. I think this all has to do with blood flow/pooling-for me anyway. Hope things get better. JenniferTX

I have a lot of trouble with this neck pain--neck, shoulder, head. I was taking tylenol, soma, and ice pack just to try to get through it for probably almost a year. I thought it was from whiplash, but am now thinking it is from POTS as nothing has helped until recently my dr switched beta blockers. So the one before did not have that vascoconstrictor effect-toporol xl, so he switched it to propanol inderol or however you spell it. I think my neck pain is related to the effects of adrenal release, as he said that does something to the blood vessels and muscles--he said that causes the muscles to tense up. I have done everything to get rid of the pain and nothing worked and I could not believe that this helped so much--I am so happy as it was a major problem--major. However, on the down side, it does not help with the chest pressure and breathing as much as the other did and now I am so tired!! That is a real problem now. If I could just take both--any of you know if they ever combine beta blockers????? Take care and I hope you can find some relief. Jennifer TX

Do not give up. As hard as it is and as impossible as it seems you have to keep trying. What kind of dr do you have? Is it an expert? Could you let us know what you have tried, so we can see if we have anything to add? When you feel like you are going to pass out, if you are standing, cross your legs and squeeze them and your butt together for 1-2 seconds. This causes a short rise in bp. It helps me. And IV fluids really do help. I hope you feel better just knowing that you are not alone. Jennifer TX

Morgan, We have not met, but I have to say, do not give up. Somewhere there is a good doctor who will help you. Maybe if you think it is adrenal find a website and maybe they have a list of drs? or a wonderful group like this? I do not like ERs and you must certainly know you are not alone. I am not sure what is wrong with some of these drs. I am just thinking maybe that is a way to hide their "I don't know what is wrong with you." I hope things get better. JenniferTX