blackbirdsings

I had alot of pain after I had all four of mine removed. The doctor had me come back in and I had dry sockets in all of them. Not comfy! We had to put medicated strips in the holes and change them. After a few days of this, I remember feeling alot better. I think I had to rinse with some special rinse. Still some discomfort and a very swollen face. I would say call the dentist and ask if she can at least come in and be checked. Good luck!

With the hormonal changes has anybody here had any testing done that really shows something? If so what and what has been done to help you? What is microgestin? Thanks!

I don't know of the doctors in the LA area. Overall I have found finding a primary care doctor that is willing to work with you, go over research, call the specialists and not give up is good. From there have your specialists. It is a good idea to keep a primary care doctor for when you have non POTS related problems, such as infections that need to be treated. A good pimary care doctor that is somewhat understanding to the POTS is good when you have an infection, if they will come up with ideas and ways to treat you, so they don't cause more problems with your POTS. Hope that helps some! Good luck!

My gosh! Completely horrifying, how on earth could they not document what went on?!?!??? Really grossed out by that report. Somebody said to me about bad doctors..."That's why they call it "practicing" medicine. I'd call a lawyer. The people in that ER do not sound as if they should be in an ER or dealing with people, especially when they are ill. How do you go about get a complete copy of your medical records if they are for you personally and not to be sent off to another doctor? I want to get mine and am unclear on the process.

My gosh!! That is beyound horrifying and I was scared for you reading your horrible experience. I've certainly had my share of doozies but that went beyound and your reaction was SO serious. I hope you are doing better, but am sure you are feeling "funky". Please know I will be thinking of you and your family. This was past the last thing you ever needed. I am just so very sorry you are going through this right now, much less at all. Please let us all know if we can do anything to help. Rest as much as you can, and I hope you aren't too uncomfortable and are out of the "danger" part of this reaction. Do you have an Epi-Pen nearby just in case?

I'm truly shocked they would say you are too bad off for PT. I really don't see how that can be...I say search for another PT and do some massage. Did you ask them what happens if somebody is paralyzed or has been in a coma for months? Those people are going to be far weaker than us...They can certainly work with them. I just don't understand how they can not help somebody that needs the PT. That's the whole point! Are there any places in the area that do pilates and physical therapy? That might be another option. Good luck!

I'm sorry your having such a rough time right now. It really sounds like alot of us are in the POTS hole. I know I'm there and got the news today that I will get seen at Hopkins next week. Really hoping it will be a very positive experience and help me out. Back to you. I am not able to help with the beta blocker situation too much. I'm not able to take them, because it triggers asthma problems. When we tried me on one of them, I have very bizarre and of course unusual side effects. It took way over a week for things to settle back down. I have found that I notice the tackycardia more on different medications. Though when I am having a tough time, I have some trouble at night and it makes it very hard to rest no matter how tired I am. It sounds like you coped very well last night! No matter how many times I have these POTS holes they are all tough to deal with, and all miserable. I think knowing how to get through them, they won't hurt you and that there are others helps some. Sorry, I'm not more help. Good luck!

We had this a few months ago. The company we used put some traps in the attic and basement. Our pet doesn't go in that area and we don't go often. The man set some sort of "food" that they eat, and than they go outside...problem solved. I wasn't around when he was here, nor have I seen whatever he used BUT on a good note, no more mice. I would assume most companies would have something like that, because we didn't want to do chemicals either. Hope that helps, if you need something more specific I will ask what was used. Good luck!

Morgan and Jake- I am continuing to keep you all in my thoughts. So sorry that you all are going through all of this and hope to hear good news.

Welcome!! Sorry, you had to join but I am sure you will find this group to be very helpful. I just wanted to wish you well and add that florinef is not the right medicine for everybody. Talk to you doctor about it, but if it keeps being troublesome, there are other options. I did very badly on florinef everytime I took it, and it didn't help me-actually made things worse. I just re-read that things are more stabalized now. Read old posts on diet, exercise etc. Lots of daily things we do that help us out in addition to medicine. Good luck...I hope this makes sense..I'm in a bit of a POTS hold right now but wanted to at least welcome you.

Tearose-very glad to hear everything turned out well!!! Hope you continue to feel better and better :-)

My massage person uses reikei in combination with lots of other forms of massage. It is extremely benefitial to me and truly works. For me I am actually able to really relax, and sorta "float" and feel very calm, comforted and my body feels pretty good. I typically have more energy for the rest of the day, less pain and less fainting. My body is able to "cope" a bit better. It takes a very talented person to be able to do this technique, and a person that truly cares. My massage person just did it on me and we found it works great. I was away for several months and she wrote down the types of massage done on me and which areas to better help whoever worked with me. I found it very difficult to find somebody that does this type of massage. Som places (depends on the location) will not say they do reikei. They have found they loose customers or people will not come at all. Some believe it is a form of evil, witchery and should not be done. To get around that I found if I explained on the phone that I have medical problems, this is what I need, does anybody do it, or any form of energy work...they are much more receptive to telling you what is really offered. I would reccomend everybody give it a chance if they have found their body does well with massage. Good luck!

Good luck!!! What is a clonidine test?

Me and POTs meds...I have literally been tried on all of them and sadly none of them worked, inclduing one really bad reaction (beta blocker). I have been told I have POTs BUT my autonomic nervous system/sympathetic is all healthy. The specialists say I present with POTs but its not true pots...it's caused by an underlying cause that makes a chemical problem, causing me to have Pots. How confusing is that?!? I am now wondering if all that is going on with me is what is causing the POTs and has just now gotten so bad that it is showing up. I am really not certain, but would be content to just have the stuff going on now cleared up. Steph-Doctors say my blood volume is normal, but one said he would be interested in further testing but nothing ever came out of that. I am very interested in the Procrit injections. They sound like something that might really be able to help improve how I feel and daily functioning. Especially since my red cell counts are currently too low. I tolerate pills well, but a few weeks ago I had a horrible time with an antibiotic. It gave me horrible heartburn/acid (I now understand the people on ads for the meds that help with that!) and my body had trouble digesting the capsul. I hadn't ever had that happen before. I will bring up all of the nausea medicines you listed with the doctor. Are the thigh injections painful? I know how to do shots in arm (fatty part) but haven't done one in my thigh before. Nurses tell me it hurts less in the backside, but those have hurt me horribly-not sure why. I will see if I can drink the carnation or ensure. That would be a huge help. I can usually tolerate a Starbucks Vanilla Bean, but that is kinda expensive to do all the time, and not something I can easily do throughout the day. Today I got a little more food in, but it ended up making me sick I'm glad you pointed out that a patient should not be in pain. I am going to bring that up and stand up for needing to be on something till this is figured out. I am on something now, but the doctor I have been going to is very rude about me continuing to have to take it. I used to have a doctor that said it was ridicolous for me to go around in pain and suffering. I just turned 24 and have been fainting since I was 11. It didn't get bad until a few years ago. I am not getting to do much these days, not been able to finish school, sports, work etc. Very frustrating and dealing with horrible doctors and the amount of them I have been to is just insane. I know from this website that sadly I am not the only one treated horribly by so called medical professionals. mom4cem-Your post was actually helpful-thank you for sharing. My muscles have gotten abnormally tight lately and are not doing right. From what you said this would make sense. I am finding more and more I must tell a doctor what to check for, what is wrong and what I think needs to be done, otherwise most do not seem capable to do it on their own. I let them try but if it appears they won't do anything, I tell them what I want done. I don't like that I have to do that. Laura-I am not familiar with the syrup you are talking about. Sometimes drinking sodas works well for me if I can get them down. Something to do with the syrup and carbonation. I typically don't drink sodas but lately have really been doing alot...for some reason my body is cravinvg them and I can get it down easily. We should know tomorrow when the doctor will see me. I hope very, very soon. I didn't sleep at all on Saturday and Sunday morning was so congested I had to take something for it. Grrr...ended up in bed asleep/unable to get up until after 9pm. Not fun, will be glad to get better and not have this going on. Thanks again for all of the posts!!!

Hi everybody, thank you so much for all of the replies, support and suggestions :-) Tammy-After reading what you and everybody else said about decongestants I think I am going to go back to staying away from them. I think it added to me feeling worse, especially since the decongestant was cauing increased syncope. Blackworld mentioned people having more trouble with decongestants if they are on a beta blocker. To add to things, none of the beta blockers or other medications have worked for me. So I am on nothing for the fainting and have to control it the best I can. I will do another post about that... Blackwolf-Glad you like that name! I normally do one massage a week and find that helps more than just about anything. It will help calm a little of the swelling and pain down briefly, but it comes right back in full force. I also do pilates and the combination of the two help. I haven't had my massage recently due to being away on medical stuff. I can really tell a difference and can tell not having a really good massage is problematic for me. I had somebody massage me while I was away and did not benefit from the massage, and it hurt horribly the entire time. I am really small, and smaller lately, so I need a light but firm touch. This person didn't understand, so I switched to somebody else and it went much better. I will be glad to have an appointment with the massage person that works so well with me. I've done compression hose with no luck but not the wraps. I am going to ask about those. The odd thing is that if I am doing badly even laying down, legs up or on my side, the swelling doesn't always go down. Somtimes it takes days and days of solid rest for it to calm down, and even than it doesn't go down all the way. I agree with the lymphs not pumping fluid correctly. I also think there might be an osmolality problem due to the proetien excretion and the globulin/albumin ratio being off. I have no idea what they do about that. Neurontin, I tried and was allergic to the med, and had a bad reaction to it. Advil only works on me for temperatures, and muscles soreness related to sports stuff. Doctors don't always get that we don't respond like most patients. I wrote down the name of the medicines that might help with nausea. No doctor has agreed to put me on anything for the nausea or the upset stomachs. They really just ignore that it is happening and tell me to make more of an effort, which is just ridicolous. I found some candied ginger that is organic-it helps some but I have to do it at the first sign of nausea, otherwise its too late. I am going to push being put on something for the time being, because I think it would really help me be able to eat more, and my body really needs the nutrition. Tearose-I will be going to Hopkins. They are sending me to an internist so he can coordinate the other doctors and send me to the other specialists. He is supposed to be very good. Doctors at Hopkins have been familiar with POTs in the past. I also wrote down the name of the shake you use for added nutrition. I do fairly well with liquids, so a shake sounds good to me. I have been concerned about not getting enough nutrition lately. I know that once we get a doctor that will really work with me, things will greatly approve. I get very annoyed with so many doctors being horrible to me about the fainting and rare things going on with my body. I had one a few weeks ago accuse me of it, and throw a fit that I was going to go elsewhere for medical treatment even after they said they didn't know what to do. I think its just knowing I might have to go through yet another jerky doctor that bothers me. My family and I have decided that when we know what is wrong and I am treated, we are going to ask the doctor to write a letter explaining what was wrong. Than we are going to send it to the doctors that have been so horrible to me. I am glad that I have doccumentation from NIH stating that I have POTs and syncope. Nobody has argued with that letter yet. I am learning how to really stand up for myself and be an advocate like you say. It can be really hard and frustrating, especially when you already don't feel well. I always take a family member or a friend that knows my medical things with me. Doctors don't always like it, but it is my life and my health not theirs and I have the right to demand medical care and to not be treated horribly. Leah-I haven't had any kidney infections before. When the protein levels were so high I was doing tons of sports. The doctor decided to ignore it and said some young athletes have the protein loss. This was right before major problems began. I now know if anything comes back funny to push for more answers before something gets really bad. I looked up Lupus. I have some of the symtoms. The basic bloodwork for that had been done on me and was okay. So a bit puzzling, but I will bring it up with the doctor. Some of the medications they use sound like they might help me, and at this point it might be worth a try. Brenda-I have been to so many doctors and many of the will not listen to me and if they have to work on it, they don't seem to want to dig deeper. I am glad I will be going to a major medical center, because it seems as if there will be many resources there that could help me. Hopkins has a pediatric Pots dr that has done a fair amount. I could no longer see him because I am over 18, but I think they could easily bring him in on treatment plans. My anti body tests have been normal so far. I need to look back at several of them to see if there has been any change in them over the past few months. The rest of my bloodwork has changed so I would assume that might have too, but I will check. I had not thought about the pancreus problem and will ask for that to be checked. I am a little over 100lbs but the edema is adding weight to me, so we aren't sure how much I really weigh. Good luck to your friend! I hope they get her better very soon. I agree, this amount of swelling is not normal. I have had several doctors say that I have a body image disorder and maybe I'm not really swollen but think I am. Insane! We had a fit and I no longer go to those doctors. They didn't want to look for a reason and one also said to just ignore it. Not responsible to say the least. Well this has been a very long post. Thank you all again and I will keep you updated!

Hi Ernie, I'm glad some of what I said helped :-) I remember you asking about the muscle problems before. I find that concerning and have not heard of that being a part of POTS before. I would keep pushing to find out what is going on, if possible. Especially since they have not tested you for anything. Lately as I have been doing worse my muscles have gotten extremely tight which is not normal for me. I do not know what is causing mine, but with funky bloodwork I think it is being low on different things-not sure. I hope you can get your cart and be able to go out and have fun :-) I was just thinking that since I have had such a bad day today, and I know tomorrow might not be that great, that if we go to the store I would have to sit in the car. Otherwise stay for a few minutes and go back to the car. I saw somebody else say that happens to them. I am going to ask to use the cart if I have trouble-there is no shame in doing this I have decided. It is far nicer to do that, than faint in a huge store. Keep us updated on getting your cart!

Somebody on here said it would be helpful for me to post and see how everybody deals when faced with some challenges I am going through right now. I have been having trouble since the summer, and its not just POTS. Dealing with doctors has as usual not been going well. I am going to a major medical center in the next week or so, the local doctor doesn't know what to do with me and ends up just being rude. I was loosing lots of protein in my urine and a few weeks later I began having tons of edema. It is painful, and hard to do outfits and clothes-have to get creative. Sometimes my legs all become the same size from the thighs down. My heart, kidneys etc are all fine. Compression hose does not work on me :-( I am having extremely high levels of pain, and its not an injury pain, arthritic pain, surgery pain or anything like that. It is actually far worse than a broken bone etc. We have realized all my lymphs are very enlarged and in all of those places is where my pain is so horrible. It is very hard to get doctors to treat the pain and some do not understand why advil doesn't work. What do you do when faced with something like that? I know treating the cause of the pain would be best, but they haven't figured that out yet. Now my bloodwork is coming back abnormal. The red blood cell count is too low, a lymph count is low, many things going along with the red blood cell count is too low, also the globulins are low but albumins okay...but the ratio of those two is too high. Has anybody ever had this before? I keep loosing weight, most food makes me very ill and nobody has given me anything to help with that. What do you ask for in that area? They actually ask my family if I eat and we keep explaining I do, but an upset stomach doesn't help matters. I need to be able to keep the food in me. I also keep getting sick, it is as if it is too much for my body to fight off infections. I supposed that would make sense with the recent bloodwork. Just got over a sinus infection than got a flu/cold thing that was horrible. I am having to take a low dose of sudafed as a decongestant. The downdside to that is it makes me faint even more, which just wears me out even more. Are there any decongestants you all do well with? Any thoughts, advice, suggestions are welcome. I am not fond of going to new doctors, since I have had so many bad experiences. Really hoping this one will be excellent and can help make me better. Just POTS is more than enough, this is just ridicolous now. Very worn down, not able to do much at all, but managing to keep doing what I can. Thanks!

Mmmm...sugar...I keep craving sugar lately which is really unusual for me. A few food things that might help... Eat the sweet stuff in moderation. I don't use the artificial stuff, and accidently ate some a few weeks ago. It made me really sick and tasted horrible. I like the naturally sweetened apple sauce-it comes in a glass jar. It has less calories and sugar but tastes really good. You can mix it with the chunky apple sauce and put cinnamon on top. I really like it, for a snack or dessert. Add in a cookie if you want but limit yourself. I make cookies and freeze them. Sugar cookies freeze really well. I do this with brownies too-cut it into a serving or even smaller. Than they aren't sitting out, they stood good much longer, when you want something you can get it, also good if you feel too bad to make them. I also make dough, roll it into logs and freeze it. If you want a fresh chocolate chip cookie, you can just bake one or two and not a ton of them. You can use apple sauce as a replacement for oil and even as a sweetner in many baked goods. I came up with a combination for muffins several years ago, but haven't done it in awhile so I will try to figure it out and post the recipe. The store ones, mixes, and many recipes have an insane amount of sugar and oil. I figured out how to reduce, and have them come out really good. I found if I eat one really good piece of candy-a small square of a great chocolate or a small piece of Maple candy, that is all I want and than I don't eat so much sugar. I am trying to think of what else is helpful..I know there are some foods and recipes that would be great but they are slipping my mind. Fresh berries, or even frozen berries are great. Not sure if the natural sugars are too much though...I like to get frozen blueberries and eat them frozen. You can do this with fresh grapes too. A good alternative to other desserts. Hmm-I don't know if this is helpful or not, some of this stuff seems to junky. The applesauce is a good one though...

I've used the scooters in super stores before and they are helpful if I am feeling too bad to walk and that is the only way I can be out and doing something. The downside is being young, even younger looking and dealing with people who don't get why you are using it. I say get whatever you need so you can go out to stores, be around people and have a life outside of the house. Especially when you are fainting so quickly. I am going through a rough time right now, and its not just POTS. I will be going to Hopkins soon. It is a huge effort to get up and get out each day, but being able to sit and have somebody with me makes it possible. Any doctor who doesn't think you need a chair to get around is wrong in my book. By getting out, you are bound to gradually increase strength, even if you are sitting. When you are feeling better you can walk and move around some, but have the chair to use if you have trouble. I'm sorry you have to get one, but it sounds as if it will certainly enrich your life. I was just thinking you could even get out to museums etc with this! I do not last more than a few mins in those standing, but I was just thinking I should just request a chair so I can go see stuff. I can always walk when I am able but have that to "fall back on". Best wishes! EarthMother-what network is Monk on? I've missed something!! I am huge on having an assistant/somebody to help you out. If I am unable to get out, I make lists and have family that will go get stuff for me.

I'm so sorry you had such horrible pain after cleaning. Not being able to sleep from pain is just miserable...I go through this just about everyday. I was wondering if you would mind explaining what kind of pain you have? What is it related to...arthritis, fibro., overuse or...? I am just very curious because I have been having very extreme pain that I have to take meds for. The pain gets SO horrible it literally ***** the breath out of me and I can hardly move. It is worse than the pain I have had from surgerys or injuries. We have been doing some research and think it might be related to mold exposure. Anyhow, if you have a moment and can answer those questions when you feel better I would appreciate it. I am very curious of others that are having pain and anything that helps them and the causes of the pain. Thanks! I do hope you feel better very soon!!!

This thread caught my attention because I have been having really bad edema that changes my body weight and there has been little luck getting the edema to truly go down. It is now suspected that it is caused by exposure to bad mold that has gotten in my system etc. Doctors have ruled out heart problems, blood pooling etc. Anyhow, I've been really sick and was on a very strong antibiotic a few weeks ago. About mid week on a 10 days worth of the med. I had an upset stomach and started feeling better...Not to go into details. Anyhow, I was laying in bed and realized I was suddenly feeling LOTS better and my legs felt different. Within about two hours TONS of the edema went way way down and you could actually see bone and defined muscles, despite some of the edema still being there. My clothes were hanging on me too. I decided to weight myself and there was a 10-13 lb. difference. This lasted for a little over a day and was really truly wonderful, to feel closer to normal than I have in a very long time and to actually look it too. We know mine is not from lack of exercise, despite mine being reduced. I am an athlete so I have very low body fat and exercise makes no difference on the edema. Mine does go down some if we combine pilates with massage. We think the edema went down because toxins of some kind got out of my system but not all of them cleared out so its back. Sigh. A bizarre but nice experience and I look forward to it going down and staying down. I was very disapointed when the edema came back. I am waiting on an appointment with an environmental allergist that treats people exposed to mold. Appearently it can cause all sorts of yeast overgrowth etc. that can cause worse syncope, edema, pain and tons of other things I have going on. I just wanted to share this, because what happened to me in the past few weeks was really different and wasn't sure if it would make sense or benefit anybody.

I just wanted to add that like the others said...We are all different. On that note I have POTS and do pass out. I am unclear on why the doctor would say with POTS you don't pass out. I passed out on all of my tilts and everyday. Very tiring. Anyhow, different doctors say different things. Keep researching. Knowledge is power. If they don't like you doing the research to know what is wrong with your child, to better understand etc. if they don't want you around for tests and examinations...I have found they typically aren't the doctor to be dealing with. Florinef works for some people and for others it doesn't. For me it is horrible and does not help. It is a medication that alot of doctors push before trying others or they will say its the only one. There are other medications, just keep after it, if one doesn't work. Also increasing fluids, sodium, exercise etc. are things that can help, but you have to check with the doctor if there are limitations on anything and figure out what helps the most. Good luck!!

I think getting into NIH depends on what studies they are doing and what your problem is etc. I got into NIH the first time I went in less than a month. I don't think that happens all the time. Just keep trying to get in and check in with them every so often. As for diagnose...NIH was the first to really diagnose me but there are still things they haven't figured out. The regular doctors are clueless and ask me what to do. Real lovely.

I'm not sure about vaccines and everybody with POTS. My immune system has been pretty bad as stuff has gotten worse in the past couple of years. I had gotten the flu shot years ago and I think I was okay, but I did still get flu. Now doctors say I should not get any of those shots because my immune system isn't strong enough and they believe it could do more damage than good and make me really sick. Right now I have been sick since August and just now getting treated due to the medical field not treating me. Anyhow, have to do 4 weeks of antibiotics, still running a temp, feeling horrible, fainting etc, etc. My doctor says I am to avoid ALL busy places, places with crowds etc. to try to keep me away from too much exposure to germs and stress to my body. Still going places when people drive me, but just careful about the time of day and where I go.

Ernie, all teaching hospitals are different BUT I was at Hopkins and really pleased to find out the nurse did nothing more than take my weight, height, bp, and pulse and take me to a room with no comment. The doctor did ALL of the background etc. which does make a difference. I have gone so far as to tell the nurse I do not wish to go over my history and symptoms with them because what I have is rare and it is best to go over with the doctor BUT if they would like to be present for some of that it is fine with me. I was in an ER over the summer and the nurse tried to tell me I needed something and we sat there and said NO, she stomped off to get the doctor, who told her I was correct. It might make them angry but you have to stand up for your health even when it makes them angry. I've gone from a so called nutty female with nothing wrong with them to a so called nutty female with a dysautonomia. What they aren't able to cover in one category of being a female they blame on the other etc. SOOOOO Tired of it!