Meliss446

Thanks for the suggestion. Yeah I know that april is not too far off considering I made the appointment in September. But I am just getting so desparate. I do have a cardiologist here, but he is not really wanting to try anything himself as he is not really comfortable with giving many drugs. I have a neurologist who has really been the one treat me, but he is really busy so I only see him once and my next appointment is not that much sooner than when I would see Grubb. I guess it will be fine to wait. It just gets so frustrating to wait for answers! And I was just so fed up with my PCP today. He never even took my pulse. He listened to my heart for a second, and then my mom asked him if I was really tachy, because I had been all day. He said he didn't hear anything, but then my mom took it and it was 130. I don't know what his definition of tachy was, but I would think 130 would qualify! I just wish there were more dysautonomia experts out there! I think they certainly are in high demand!

I was wondering if Dr. Grubb has any sort of cancellation list or ways to get into him faster. I know the answer is probably no, since everyone wants/needs to get into him, but I just need someone more knowledgeable. I just got back from my PCP and had a horrible experience. They know absolutely nothing about dysautonomias or patient care, and I was so disappointed. I have been having new/worsing symptoms that my mom felt needed to be checked out, but this just turned out to be miserable. In fact, my mom said she never wants any of her kids to go back there and is switching our PCP. Anyways, I don't want to rant, I just was wondering if there was a way to get into Grubb faster. I have an appointment at the end of April, which I guess isn't too far away, but it just seems like a long time when you feel so sick. I just want to get help so badly! My cardiologist told me it looked like Grubb was my best chance for getting more help at this point, as my docs here are running out of ideas. Any suggestions would be appreciated!

I tried it three or four different times, each time titrating up on the dose and staying on it for quite awhile, but every time I felt worse. I had a doctor tell me midodrine would never work for me because my blood vessels clamped down, and so a vasoconstricter would just make things worse. All my other doctors thought otherwise though, but I think that one doctor was right. POTS is so differentiated among individuals that what helps on person may make another sick.

Wow your episodes sound exactly like mine. I get "night time crashes" too. I can get flushing episodes other times of the day, but it is almost always in the late afternoon or night. So is it treated with just a regular antihistimine? Also, has anybody heard if mast cell activation disorder can cause unilateral flushing? Like the other night, I had an episode, and my left ear was bright red and burning, but the right ear was pale. This happens with my hands a lot too. It is pretty crazy how random it seems to be. Keep us updated if you hear anything else.

I was doing some research today, and found some interesting things relating to autoimmune POTS and anti-ganglionic antibodies. I read that an autoimmune reaction may be the cause of some peoples POTS. I was wondering if anyone has tested positive for anti-ganglionic antibodies or have an autoimmune disease that is causing the POTS. I also read that this is sometimes treated with a plasma exchange or IVIG. If anybody knows that they have this, or knows anything about it, I would really appreciate the information. Specifically, is there a more specific presentations of symptoms that would indicate an autoimmune reaction? It seems like the symptoms of POTS varies by the physiological cause behind it. Is it difficult to get tested for this, or is it worth it? My POTS was post-viral so I am pretty interested in this.

I know how you feel. Most of the time people don't mean anything when they say these things, but once you have had a bad experience, you just become hypersensitive to any sort of comment like that. At least that is how I am I think. When I was first sick, I had this nurse that was convinced that I was anorexic, even though I had obvious symptoms and had been diagnosed with POTS. So now, I am just super sensitive to comments about me being to skinny. Like the other day this nurse goes "wow, you are so skinny, do you ever eat?!". And afterwards I told my mom how much things like that bother me, and my mom told me she meant nothing by it. And I knew she didn't, it just still bothers me. I love the look doctors give you when they hear what is wrong with you and they have no clue what you are talking about. You have to find the humor in doctors who are way over their head and don't know anything about dysautonomias. At least that is the only way I can handle it!

Well like the others mentioned, it cause problems for some people that it doesn't for others. I tried it about a month ago, but I had to stop. I had no problem with muscle weakness. The problem I had was with nausea. It was so bad I really didn't eat the whole time I was on it. But the strangest reaction for me was that when I took it I would become bradycardic. Which is crazy for me, because I rarely have a resting HR of under 90. The pharmasist said that it can have a moderate interaction with the digoxin I am on, but that it was still really weird to have the reaction I had. I was also really light headed and hypotensive. But I would talk to your doctor, and maybe just start with a really really small dose and titrate up if you don't have any side effects. But if your gut tells you it won't work, then you need to listen to that to. I had that same feeling with midodrine. I tried it 4 different times, each time working up to a higher dose. Each time it just made me feel worse and gave me bad headaches. So I think you have to reach a balance between trying new meds and listening to your body at the same time.

Yeah I think that it can go either way too. Because a lot of you have mentioned that it seems to slow your metabolisms down, but it speeds mine up. I was disgustingly thin when I first got sick. I had meningitis first, so I was already thin from all the vomitting, but I just kept losing weight, even though I would eat as normally as my nausea would allow. I hit my low at about 87 pounds. I couldn't even look in th mirror because I hated how thin I looked. And once I started feeling better, I ate a lot and really caloric foods, and it took forever to get back to a healthy weight. So I think that it can just do crazy things to the metabolism.

Sorry you had such a difficult time! I understand what it is like to think you are just going to do a little thing, and then it ends up being a much bigger undertaking than you expected. I do this all the time! I have had the same thing happen to me. My hands will be purple, and my finger nails will look hypoxic and turn blue. I think that it is inadequate circulation. I have been told by a few different doctors that when it happens, it is like my blood vessels just clamp down, and so the blood cannot circulate properly. In fact, when I had my TTT, after I came to from passing out, my hands and part of my arms were completely numb. The doctor told me to squeeze his hands to check for muscle weakness, and I couldn't even feel his hands let alone squeeze them. The nurse kept asking me if I wanted a warm blanket because my hands were so ice cold, and the doctor kept telling her that it was because I was clamping down to maintain my blood pressure. So at least for me, I think that is what happens. When I am up my vessels in my hands and feet just clamp down to keep my BP high enough.

This is kind of a generalized question that I am not sure anyone there really is an easy answer for, but I was wondering how some of you have found good GPs. I have been going to a pediatric group for about 5 years, but I have never been happy with them. In fact if I wanted to, I could probably sue the pants off of 2 of the doctors there and at least one of the nurses if I were more of a litigious person. They messed so many things up, it is pretty sad. Needless to say, I haven't been really happy with their level of competancy or care. I think they are fine for runny noses, but I need more than that. I haven't ever really gone to them unless I have strep or a sinus infection or something, and have been just going to my neurologist and cardiologist. But I am 18 now, so my mom and I are thinking that I could go to an adult GP and it wouldn't be a bad idea to sort of have a central doctor to coordinate my care. The problem is, I just don't want to make a bunch of appointments and try to hunt down a doctor who actually knows something about dysautonomias. Does anyone have any suggestions? Is there some sort of way to find the best GPs in certain areas? I am sure there is probably not really an easy way and it has to be a bit of trial and error, but I probably need to have someone to check up on things who actually knows what they are doing. Thanks for any suggestions! Melissa

dizzygirl, I will definitely let you know if I get any answers. I know this can be all related to POTS, but I wish I could find a doctor who could explain the physiology behind it. I also get a worsening of POTS during flushing as well. So I will keep you updated if I find any thing out. Renee, Thanks for the suggestion about Raynaud's. I actually had my primary care doc look at my hands and suggest it before I was even diagnosed with POTS. I have never officially been diagnosed with having it, but from what you wrote and other things I have heard about it I suspect that I have it. So with Raynaud's Syndrome, can anything be done? Also, is there any problems with the decreased circulation? I know that any sort of wound on my hands or feets takes forever to heal, and somethings never really do correctly. Do you know if this is part of bad circulation possibly from Raynaud's? Thanks for the help! Melissa

I don't get this, but my aunt had this for a long time. She would cough so hard she would throw up. She went on antibiotic after antibiotic thinking it was bronchitis, but nothing would work. It ended up being that acid reflux was causing the problems. It sounds weird, but acid reflux apparently can induce coughing fits. I think her doctor explained it as something to do with the gag/coughing reflux. She didn't think she had it, but when she went on an prevacid the coughing spells pretty much went away. Obviously there are lots of reasons that coughing spells can occur, but I thought this was a pretty interesting and unknown one.

Well I think that how low a person's BP can go with it out being a problem for that individual varies from person to person, just like HR or temperature. The lowest I have been recorded at was around 50/25, which was when I was doing orthostatics in the hospital. I started to pass out, so I told them I needed to lay down, so this was my BP laying down. But lower BPs like you have been having are not fun. If you are concerned about the effects of it, it is probably best to ask your doctor, to see if there are any other meds to help. I know that when my systolic dips below 100 increasing my fluid intake seem to help. When I was really sick, I had a PIC line and received 2 liters of IV saline each day just to keep my pressure up along with the meds.

I haven't been to a dermatologist. I hadn't of ever really thought of it because it seems more like a circulatory problem than a skin problem. It doesn't itch at all, it just burns and is warm to the touch. It seems more like flushing then a rash, but it seems rash like in that sometimes is will only affect half of my hand, sometimes all of it. I think I might just go see my GP though just to see what they say. My mom is worried because I get stiff joints, and then now that they are getting bright red, burning, and swelling, she thinks it could be some sort of autoimmune problem going on.

I used to be really fit too and was playing basketball and swimming competetitively before this all hit. Now, I try to excercise, but no matter how hard I try my body has a hard time with it. This last summer I decided to give walking on a treadmill a try, and I started out slow, but the tachycardia would never ease up. I kept pushing though, and trying to build up, but my mom made me stop because she took my pulse on time when I had been walking for 10 minutes and it was 212. So that didn't work too well for me. But I know that I often feel best when in the water, so I would suggest light swimming. Every single doctor I have seen who knows anything about POTS tells me that swimming is a good idea to try. But I know what it is like to go from being really active to getting tired after a flight of stairs! It is so frustrating! It is still a little bitter sweet for me to see basketball games and realize what I am missing by not being able to play any more!

Dizzygirl, you mentioned that the doctors have given you steriods for the problem. What was there reasoning behind that? Did they believe that it was an autoimmune or inflammatory type of problem? I guess I am just curious about why it happens, because no doctor seems to be able to explain it, and it is getting worse.

I personally don't have a problem with this, but i have heard of many POTS people that have. Like the others said, part of it is standing up. In my opinion, I think part of it is also based on catecholomine levels. Lots of people with POTS, including myself, have abnormally high levels of of catecholomines when standing. Norepinephrine is one type of catecholomine that is more commonly known as adrenaline, which is responsible for the "fight or flight" feeling that I think someone already mentioned. I think that if we produce too much norepi in normal situations, then even slight stresses that wouldn't normally bother people could trigger an even greater release of catecholomines, causing a feeling of anxiety. Thats really just my personal theory of why anxiety type symptoms can come with POTS.

Well I have been having this weird flushing that I was wondering if anyone else had or knew about. I have always had flushing with POTS, but it seems to be getting worse and is different than usual. Most of the time, I have freezing cold purple dusky colored hands and feet. They are sometimes really stiff, especially in the morning when they seem really cold. I notice that sometimes it is hard for me to write when this happens. Because my fingers feel so stiff and cold. Anyways, then I will get these episodes where suddenly my hands will turn bright red and my veins will pop out. I have had this pretty much for four years, and really haven't thought to much of it. Recently though, it has been a little different and worse. I still have the same cold hands, but now I am flushing more. And it looks more rash like, because it will sometimes only happen on half of my hand. Sometimes it is in both hands, sometimes one hand, sometimes part of my hands. It also can happen where my ears will be really red. Again, it is sometimes unilateral and sometimes bilateral on my ears. When it is bad I also get it on my face, but just on my nose and a little bit of my cheeks. Also, when it happens, I feel miserable and get this feverish feeling that is hard to explain. My hands will burn, to the point that I run them under ice cold water for relief. This has been happening at least once a day for the past few weeks, and can last for up to three or four hours. It's increasing severity has been hand in hand with a decline in my overall health also. I know that lots of POTS patients get flushing, but does anyone have it like this or where it is rash like in appearance? It is weird how it is getting worse and appears different than before. I have red some things about Mast Cell Activation disorders, but I don't know if it fits. I have tried taking some antihistimine medication when it happens to see if it is a histimine related thing, but haven't found any correlation. My mom wants me to go see my GP about it, but unless it is something that either could be helped or could be a sign of something else wrong I don't really want to waste my energy. That may sound bad, but my energy is a precious thing! Thanks for any suggestions Melissa

I take florinef, which has taken me from passing out every time I stand up to at least being able to function somewhat. The thing about florinef is you have to keep up with salt and fluid intake to achieve maximum benefit. Like the other Melissa said, it essentially helps you retain fluids better, which hopefully keeps your blood volume up. I tried midodrine three times and it never worked, just gave me bad side effects. But everyone is different. I would just start on one and see how your body reacts to it, and then you always have the other one to try.

Momdi, Thanks for your help and sharing your experience. Yes, high school is definitely difficult with POTS, but I was lucky enough to get a diagnosis relatively quickly. I am glad your son is doing at least well enough to study engineering. My mom is so worried about me starting college this fall! I think I will try to get into to see Dr. Low. It sounds like it can really be benefitial. And like you said, different medicines help people in different ways, so I think it is helpful to pinpoint which ones are the most likely to help. I am not sure if I will be able to get in, but I will give it a shot! My mom is pretty persistent when it comes to caring for her kids, so I know she will fight for me to get an appointment! Melissa

How much florinef are you on? I have had to be on a pretty high dose at times to get my BP up. I have been on as high as .8 mg, but now I am on only .4 mg. Also, your fluid and salt intake are essential to raising the BP when on florinef. Like Carmen said, the Beta blocker can lower BP too. IV fluids also help. There was a time when I was so sick that no amount of florinef was helping and I was too sick to get adequate fluid intake, so I had to have a PIC line for 6 months to get me back on my feet. So the doctors aren't monitering your potassium levels? That was a major concern of my doctors, and when I first started with florinef I was put on a Potassium supplement and my levels were monitered closely. Now they only check it every so often, but that suprises me that your doctor does not feel the need to check it. Low potassium can cause muscle aches which can just make everything worse.

My neurologist told me he wanted me drinking a gallon a day when I first got sick. This was pretty much impossible for me at first because of the nausea, but now I drink a total of around 120 oz of fluid a day. I drink Propel fitness water. I really like it because it is not as sweet as gatorade, has the electrolytes, and is a little more exciting then water. My mom goes to target and buys a cart ful of Strawberry-Kiwi Propel, and I will go through it in like a week! I also drink a lot of water too. But during periods when the nausea is really bad, my fluid intake drops so dramatically that I usually need a little help from an IV or PIC line. There was one 6 month period where I had a PIC line and received 2 liters of saline every day. But I think you really just have to find a balance that is right for you. What may be too much fluid for one person may be not enough for another.

I don't know if I have noticed this on a day to day basis, but I recently had a TTT where it was a problem. I was up for like 20 minutes, and I started feeling my breating become more rapid, and then I passed out. When I came to, I was breating really fast and the nurse and doctor kept telling me to try to slow down. Even when they brought my mom in after I had stabilized she said I sounded like I was panting. I have noticed it a little bit before during pre-syncope episodes as well, but I have never counted my resps or had it all the time.

I just recently went to a neuro opthamologist and had my eyes dilated. It bothered me too. It just really threw me off and gave me a bad headache. I don't have a suggestion really on what to tell the doctor other than that it makes him feel worse. I am sure if you just explain your son's situation the doctor would be understanding. Oh by the way OC Sunshine, I think that is really interesting about your pupils always being dilated. I think what your doctor was refering to was the autonomic nervous system, which controls blood pressure, heart rate, and the dilation of the pupils. Like when your body is in stress, the sympathetic division of the autonomic nervous system kicks in, dilating your pupils and increasing your heart rate. I think that is really interesting though about how they are always dilated. Sorry, I am just really into medicine! That must be such a pain though! I can't imagine always having that!

Momdi, So were you able to get other diagnoses than POTS through the testing. I was diagnosed four years ago with no TTT and just some orthostatic heart rates/blood pressures that were consistent with POTS. I had a TTT just recently and it was positive, even with all my meds. I know I have POTS, but I always have felt that there was more going on, and that extensive testing might be benefitial. Was Dr. Low also able to offer suggestions on treatment? Also, (and this question can really be answered by anyone) how long were you there for? I am a senior in high school and am on schedule to graduate, so I can't afford to miss much school. I am doing half of my classes homebound and half at school, so it would be hard to be gone for long. Thanks for your help!