Katybug

I tested B12 deficient and was given 3 shots over the course of 3 months. I did not have any side effects other than pain/soreness/bruising at the injetion site (which wa tolerable although it lasted longer than other shots I have received in the same spot) but also did not gain any benefit from it. When we retested my B12 levels 2 wks after the 3rd dose, I was well over the recommended levels. I stopped taking the shots since I was not feeling any difference in my well being and I was essentially "overdosed" (although I did not experience any adverse effects from this.) Just didn't seem worth the pain of a shot if it wasn't helping.

Hi Pulp. I went through being misdiagnosed with anxiety too. And at first I believed that's what it was (I had never even heard of POTS). But when the other symptoms (migraines, vomiting, diarrhea, severe abdominal cramping, visible shaking) continued to get worse, I knew it was something other than anxiety. Your autonomic test sounds like the typical POTS results. Please keep on the doctors until they help you, even if that means finding new doctors. I don't know what healthcare is like in your country but I have found even here in the US that it is more about the doctor's attitude than their knowledge. My cardiologist didn't know much about POTS, but she has made a point to learn since she diagnosed me. I think she's an angel but it wasn't her knowledge that helped me, it was her willing attitude that made the difference. I have my fingers crossed for you and send a hug your way.

Hi lgail. If you are willing to come to the Baltimore area, Dr. Khurana is a POTS specialist (neurologist) at Union Memorial Hospital in Baltimore and he doesn't require you to have a falling BP to treat POTS. He will take a while to get an appointment but he is a great doctor and I am really glad I found him. He is listed on the POTS doc list on this website. If you are considering it and want more info, just let me know.

Hi Pulp. First, don't stop advocating for yourself. Trust that you know your body best and if you feel something is wrong, find a doctor that will commit to helping you figure out what it is. I actually asked my current cardiologist up front if she was willing to help me figure out what is wrong and not shrug me off. She has been a angel. You jut have to find the doctor that is going to work with you but any doctor dimishing you symptoms or brushing you off is not helping you. My 24 hr/holter monitor did not give us the information we needed but I was so sick that I was laying down most of the time I had it on, so that could have been the problem. From everything I have read, the official diagnosis of POTS, Orthostatic Intolerence, and/or Neurocardiac Syncope, comes from a Tilt Table Test. Then, there are other tests that can be done after receiving a diagnosis that help to develop treatment plans and/or determine the origin of autonmic dysfunction (i.e. breathing tests, blood tests for catecholamines, sweat tests.) Hope you find a diagnosis soon. Feel better.

Oh it's a sad state of affairs that so many of us have had basically the same experience. At least it seems that most of us can find some sort of humor in it. Last year the 1st cardio I went to spent 3 minutes with me, saw that I had been treated for anxiety attacks 2 yrs earlier (which was a mistaken attempt at dealing with what we now know to be POTS symptoms), and told me that he was sure that if I just committed to walking for a 1/2 hour every morning and didn't make excuses about it, he was sure 90% of my problems would go away. I thanked him for helping me chase my tail some more as I stripped off the hospital gown and put my clothes back on. The only fun thing that happened was the look of utter shock on his face at my response to his foolishness. When I got out to the waiting room my mom (she had to drive me because I wasn't safe to be on the road that day) asked what was wrong. I told her that I would have to wait until we got to the car so as not to embarass myself. Ooooo...I was so mad at the time! Needless to say he was fired, fired, fired. Maybe it is taught in med school?!

Hi Dani! I know what you mean about the doctors dismissing the driving safety issues. I finally told my PCP last fall when things got bad that he was as safe driving next to me as he was driving next to someone who drank a fifth of vodka. He looked at me like I was crazy but I told him again how my vision blurs, and the dizziness starts, and I feel like I'm driving in a Salvador Dali painting...you know, all warped and distorted and slow like I'm melting mentally. He didn't get it until I showed him how close to being drunk it is. He finally got it but you would think doctors would be more concerned/understanding when someone tells them they have severe presyncopal episodes. I hope you find a doc that takes you seriously. Good luck in your search.

Hi Tenille. When I was about a year and a half into my chronic illness and with no diagnosis, my boss gave me the best advice anyone has given me to date. She said to me, "You need to be kinder to yourself." I couldn't believe it! I thought surely she was tired of my missing work and having to leave early looking like I was on my death bed. But she told me that it was obvious how sick I was just by looking at me and that she knew I was trying to track down a doctor that could help. She told me that I needed to be as kind and understanding with myself as I was with my employees all of the time and that I needed to stop beating myself up. I took her advice to heart and each time I start to get down on myself about my situation (I am housebound most days), I ask myself "how would I treat my mom or my best friend if she were the person laying here?" Then, I try to treat myself that way. This also made me completely change my attitude about doctors/healthcare providers. I was not very happy with the medical profession at large because of the poor care I had received from many of them. One in particular had really made me hate doctors (he asked when was the last time I had a boyfriend...like that was the cause of my projectile vomiting) . But, then I started thinking, "If this was my mother or best friend, what would I do?" The answer and the road ahead became clear. If it was one of them, I would not take bad care or treatment as an acceptable answer. I would search high and low to find a doctor that was willing to help and I would FIRE the ones that were uncooperative or just downright rude. So now, I do not persue relationships with any doctor that will not commit to working with me to find answers (and I ask them the first time I meet them...I put them right on the spot). And I am very brutally honest with the ones that commit as to what I need from them at each appointment. I was always raised to "respect" doctors and to be basically meek with them. Not anymore...they work for us, not the other way around. We would not continue to pay for bad service by other service providers, why do we accept it when it comes to our health? So I write all of this because I hope that you (and all of us) can be kinder to yourself. Care for yourself as you would care for your mother, your best friend, or your children. And that includes what you will and won't accept from healthcare providers. Once I changed my tune with them, I found those providers that meant it when they took the Hypocratic Oath. I hope you feel better and I hope you take care and I hope you find healthcare providers that want to participate in your wellness. Many hugs to you, Katie

Yes, my symptoms were worse around ovulation. I can't take BCP because of my GI issues so I use the Nuvaring and I don't skip a week in using it so I do not get a period. It makes a big difference. I don't have one week out of the month where I'm even worse than normal (cause normal isn't that good.)

Hi Liz. When I first started Lexapro it seemed to help, but, after a couple of months I started to experience POTS symptoms within an hour of taking my Lexapro. I did not know at the time that POTS was what I had, so I can't say for sure that it caused tacchyardia but it definitely made me symptomatic. I also experienced this with Paxil when we tried it as an alternative to the Lexapro.

John Kabot-Zinn is the author of "Full Catastrophe Living", "Where Ever You Go,There You Are", and "Coming to Our Senses". All good books. I think he has written others as well.

Hi Tennille. Sorry you are having a hard time. Here were some thoughts as I read your post: - Can you make arrangements with your therapist to have your appt on the phone instead of in person if you are not well? Then you could still keep your appt but skip all the prep and talk while you are lying down. - For docs appt that are for your dysautonomia, can you take a cab and have them meet you at the curb with a wheelchair to take you into the office? I know its hard, but I find my doctors work harder on my treatment when they see me having acute symptoms so I do whatever I can to keep my appts on days when I feel bad because I know it actually gets me further with the docs. I hope this might help. Feel better.

Hi all! Does anyone know if there are any non-profits out there that do fundraising for Dysautonomia/POTS research? I ask because my doc says that since we POTSies are not really money-making for the hospital he works at, he does not receive a lot of funding. I just wonder if any of us have started to try to raise funds to support our cause. Any information is appreciated.

Hi Emma. Sorry you are feeling bad. Lots of water, Gatorade, and salted food is what I would recommend for what you can do at home. If you can get a hold of a pair, you could try some compression stockings for time when you are out of bed. I hope this passes soon for you!

Before we knew I had POTS and just thought I was having anxiety attacks, I tried Lexapro. It did help for a couple of months and I felt better. However, over time, I started to have symptoms again. Then, I noticed that I was actually having acute attacks about an hour after I took my Lexapro each day. We switched me to Paxil and the same thing happened. I guess I became senitive to them over time. I really think that trying any drug to treat this disorder is hit or miss for each of us. It seems like we each reacte so differently to treatment. I hope you find it works for you.

My weight fluctuates up and down 10-15 pounds on an ongoing basis but I can track it to the severity of my symptoms. If I am couch/bed bound a lot, I will gain because I am being sedentary UNLESS I am also going through the bad GI symptoms at the same time. Then I lose weight because I'm lucky to eat one meal a day successfully. I also gained weight when I started the Florinef from carrying the extra fluid.

P.S. The section of the report that tells which antibiotics will work against the harmful bacteria also gives "natural agent" information regarding which natural treatments may or may not be effective in fighting each type of harmful bacteria growth. Nice feature for those that like to use alternative therapies.

Don't know if this will help anyone but the Lyme doc I saw 4 yrs ago had tests (gut bacteria/parasites/absorption) run on me because of all of my severe GI symptoms. I don't know if you can get the testing without a doc but here is the lab info: Genova Diagnostics 63 Zillicoa St Asheville, NC 28801 (sorry I don't have a phone #) I am looking at my lab report and it was called the "Comprehensive Digestive Stool Analysis". It showed how I digested meat and veg fibers, fat absorption, several metabolic markers, microbiology growth of helpful and harmful bacteria (itemizd by specific bacteria) and yeast microbiology. We also ordered a parasitology test from them as well. The report gives the results and then a "commentary" on how to interpret the results. It also has a section that shows what antibiotics are effective for any harmful bacteria that showed up in "possibly pathogenic" or "pathogenic" quantities. It was a very helpful test. It ultimately showed that I did not have any parasites (I worked around a lot of animals so this was a consideration). It also showed that I had almost no growth of the beneficial bacteria and yeast that are good for both digestion and immune system function but I did have possible pathogenic levels of 3 harmful bacteria and definitely pathogenic levels of another 3 harmful bacteria. It allowed us to treat for this. We added high dose probiotcs and made changes to my antibiotic regiment that I was already about to start for the Lyme to also accomodate the gut bacteria issues. It definitely made a difference. (A side note is that the test samples were collected before I started any antibiotic treatment so the reults were not tainted by the antibiotics.) I am considering whether or not to have the testing done again to see where everything is. I know at the time that the doc said this is one of the few labs that do this extensive testing. Hope it helps someone!

I take Florinef (.1 mg) and it definitely makes a difference. I didn't realize how much it helped until I had to go off for a couple of wks during the summer for testing. I felt a difference within a few days. I think I pee'd more than I drank once the Florinef started leaving my system. And I was soooo thirsty all the time, my skin was drier, and even my eyes were really dry especially when I woke up each morning. I didn't feel a huge difference in my major symptoms but it was apparently doing something. We did try to up my dose and I had a severe migraine and swelling in my face by the third day, so I have to stay at the lower dose. I would recommend trying it. The effects from moving to the increased dose did not last long (24-36 hrs after decreasing the dose) so if you have bad side effects, I don't think you will have to deal with them for an extended period of time if you stop taking the med. Maybe others can let you know how quickly they recovered from poor side effects?

I was really fascinated to see how many of us are from "Generation X". That made me wonder what kind of environmental factors might be at work with us, or, again, is that just a scewed stat because of who is using this forum? It is definitely all interesting though. My POTS specialist is supposed to be a a big medical conference this month. I'm going to ask him on my next visit (Oct.) if the medical community has any of this demographic info tracked and if so where to find it.

I am unable to work and mostly unable to exercise (I might get to walk the dog for 15-20 minutes 3-4x/wk but only if it is less than 70 degrees.) If I am having a "good day", I can leave the house for errands/socializing for 2-3 hours but have to be very careful not to stand still anywhere while I'm out or that could mean a sudden acute attack that ends the outing (like getting stuck in line at the bank...I usually have to go home immediately after layng in my car for 20-30 minutes before attempting to drive again.) On a "bad day", I am not just house bound but usually bed/couch bound for the day and struggle to get up just for the essentials (bathroom, drink refills). Going up steps is always a struggle. I often have to lay down after taking a shower and getting dressed to go somewhere as I start to shake badly even on the good days. I have been unsuccessful in cooking a meal from start to finish for the last 2 1/2 months. I can make easy things like cereal, sandwiches, heat up left-overs but to actually try to cook dinner hasn't worked. I have had to come back to living with my parents so that I am not living alone because the "bad days" have gotten bad enough that living alone is a safety concern right now. Mom has had to finish the dinners I attempted to cook at about the 2/3 mark. I own a horse that I amunable to ride at all but am now even struggling to groom when I check on her because that involves lots of standing, bending, and repetitive motion (thank goodness she is at a great facility with wonderful full time care!) The good days are about 1-2 days a wk, the mediocre to bad days usually cover the other 5-7 days of each wk.

Hi Dani! I'm with you! I would LOVE to just have the flu! Katie

I can't believe they can't even decide which doc you should make an appt. with. I totally understand your frustration. Something else you said rang true with me, too. After 4 years of knowing something was wrong and not having a diagnosis, I was so excited to get a diagnosis in Feb. But, here we are in Sept. and my symptoms are worse instead of better and I am also ready to get on with it. Intellectually, I understand that it will take a while to find a good treatment plan, but, emotionally, I want them to treat me with everything they've got and quick! I, too, am frustrated. Hope you hear something soon.

Ginger, So sorry for your loss. Please take good care of yourself. My good thoughts and energy are with you and your family. Katie

Hi Petuniasmom. I have been dealing with this issue myself this summer. I know exactly how she feels. Its like someone has put a hundred pound weight on my chest. I can breathe but it just doesn't feel like I get enough oxygen and it is an effort. Cooling the air temp does seem to help but I have noticed recently (I live on the East Coast of the US and it has been wet, wet, wet) that it is not just the temp but the humidity too. For example, this morning I have goose bumps because the air temp outside is chilly (maybe around 60 degrees) but it is so humid that I am about to turn the air back on because I just feel like I can hardly breathe. I am going to get a dehumidifier as I believe this will help. I will probably have to put a long seeve shirt on after the AC has been on for a while because I can't regulate my temp very well and I will be cold but will still need to have it running for the breathing. I also find that when I am having a really bad day or an acute attack that an ice pack on the back of my neck wrapped in a thin towel helps. Interestingly, in the winter, I go the other way when I am indoors and can never warm up, have to wear many layers of clothing all the time including hats and scarves, and have to use a humidifier to keep the air from becoming too dry. I really think that my body has just gotten to a point that it can not adapt as others can and I have to be careful to control the environment to kind of maintain an artificial homeostasis for myself. I hope your daughter gets some relief soon and please let her know that she is not alone and there are people that really get what she's going through.

Hi kayjay. I only have very mild, very occasional night sweats now. But, when all of this started 4 years ago, I had them every night and they were really bad. It turned out I had Lyme Disease and Babesiosis(another tick-borne illness) both of which went undiagnosed for a long time. After I was properly treated for that, the night sweats improved dramatically. It may be worth looking into if you are active in the outdoors and they don't have any other good explanation for it. It is a common symptom of Lyme.