Meliss446

I would get at least one in the smallest size you offer (adult XS or S) , but maybe more depending what they say/look like.

Sara, I am going to send you a PM about this, so check out your messages

I am not sure if this is what your doctor is talking about, but there is such thing as a chiari malformation that can cause POTS. It occurs at the base of the skull and compresses the brainstem, causing POTS symptoms. But this is not the cause for all POTS patients, only some of them, so I don't know if this is what your doctor was specifically talking about. It is the only thing I could think of though.

I have never taken store bought potassium supplements, but I have been on K-Dur for 4 years. I take 20 MEq two times a day, once in the morning, once at night. I have never had any problems with it. If you do have low levels of potassium, that can contribute to problems. Hypokalemia can cause muscle aches, which was a problem for me when my levels were too low. But I don't know about supplements, I have just always taken the K-dur

I tend to feel worse in the heat, and I think it is due to vasodilation. That in turn causes headaches for me, so that could be a contributing factor as to why you get head aches when it is warm out.

I have the book and would suggest it. I think I got it off of the NDRF.org website. I read it a long time ago, so I don't specifically remember reading about the temperature fluctuations, but I could look when I get a chance. But it is good that your daughter got an appointment with him. I just got back from seeing him and it was well worth the trip. He spent a lot of time with us and had some interesting ideas about what I could try. Also, he was able to diagnose Ehlers-Danlos Syndrome (a genetic problem affecting connective tissue) in me almost immediately. He seems to be highly knowledgeable about POTS and I would definitely recommend both seeing him and reading his book.

I had ordered a copy of my charts and found an ECG I had from a cardiologist I saw a few months ago, and it said that it was an abnormal ECG. It read sinus tachycardia (as usual), but it also listed a "short PR interval" and "extensive ST-T changes" as abnormal. It said on the sheet that it was an "unconfirmed analysis", whatever that means. Does anyone know about this? My cardiologist said the ECG was fine. I guess I trust him, but I think that sometimes doctors get in the mind set of looking for specific things without looking at the whole picture. If anyone has any medical expertise or has heard of a short PR interval before, I would appreciate the info!

I am finally going to see Dr. Grubb in a few weeks. My appointment is on the 27th. So it is still a bit aways, but I want to get everything ready before hand. Anyways, this is my first appointment, and I know many of you have been and can offer some help about what to bring, expect, etc. I am working on getting my medical charts from my various doctors. I am planning on getting them all and then bringing all the relevent information to Dr. Grubb myself. As of yet, I am not having any test results sent to him. Do you think that is okay, if I just bring them myself. That way I know for sure that I will be able to show them. Also, I was planning on making a time line of when I got sick, all my symptoms, etc, as well as a list of specific questions that I have. Would this be too much? I don't want him to feel inundated with all my problems/questions. I just have so much I want to find out. I think that we will be driving there, since it is only like 5 hours from here, and would probably be just as much of a hassle to fly. Does anybody know of any hotels right by his office that we could stay at? We don't want a really expensive place, but we dont want a dump either. Also, I think I have read on here before that I should expect to wait a long time to see him, but also expect to spend a long time talking to him. Is that the case? I guess if I have to wait a long time then I will be nice and symptomatic! Well thanks for any suggestions or help, I really appreciate it. Melissa

I was wondering if joint pain is normal with POTS, or if it is usually associated with another disorder such as EDS that can occur with POTS. I have noticed some people on the posts mention joint pain, but it seems like most have EDS or an autoimmune problem. For a few months I have been having some new problems. I have had POTS for 4 years, without any joint pain. But starting a few months ago, I would get burning and redness in my hands, mostly on my knuckles. My hands will be warm and slightly swollen. Then I started to get some stiffness in my hands, especially in the mornings. Now it is more pronounced, but usually fades by afternoon. But often if I use my hands a lot I will get joint pain in them. I wasn't sure if this is normal for POTS or not. I didn't really think it was that big of deal at first, but it seems to be getting worse. If anyone has any suggestions/insight I would appreciate it. It is hard to know what is "normal" or significantly abnormal anymore!

Well it sounds like you are describing some sort of cyanosis/hypoxia. From what you are saying it sounds like you are not getting fresh oxygenated blood to the smallest blood vessels. My doctor always looks at the color of my lips to guage how I am doing. If they are pink, he knows I am doing okay. If they have no color or even have a cyanotic look like you described, he knows I am doing really poorly. I have never really had it badly in my lips, but my fingernails turn blue sometimes which is a similar indication of inadeqaute blood flow. But I would definitely bring it up to your doctor.

I saw this last night. The scary part was that the girl who had died had EKGs that all were deemed normal. In fact, see had one like a few days or so before she died, and the doctor said it was normal. When the parents took that same EKG to a specialist in Long QT syndrome though, he said that he could see the long QT interval. I think that it just goes to show that you need to have a skilled doctor read your test results. But like the others said, most doctors should be able to pick it up and it does run in families.

Zofran is taken on an as needed basis. I think it can be taken every 4-6 hours. My doctor just writes out a prescription for it to be taken 3-4 times daily, and then I have plenty when I need it. I take 4 mg, but have been given 8 mg when the nausea was really bad. It may not work for everyone, but it has been such a blessing for me.

Like the others already said, it is so much more than a HR increase, and you can have bad days and good days that do matter in terms of HR. Like the other day I had a resting HR of 90, and today I can't keep it under 110 lying down and 130 standing up. I have found that there are so many variables that affect how you are feeling and how your body is responding that there is a lot of variance from day to day or test to test. There are some days I could never make it 10 minutes, some days it is not a problem. One major factor that I have found is hydration. If you are dehydrated, the symptoms of POTS will probably be much more noticeable or even exaggerated. But if you are well hydrated, you might have a little lower HR or be able to stand up longer. Like I said, there are just a lot of variables. My doctor just calls me complicated, because I am all over the place with things. I have had this for 4 years, and still haven't figured it out. But most doctors have told me that POTS does tend to wax and wane, and varies from day to day.

I get really bad nausea too. The only thing that gets me through it is Zofran. It is an anti-nausea medicine that they typically give patients who are sick from chemotherapy or pregnant women with really bad morning sickness. It has been such a blessing for me. It really helps diminish the nausea, and it doesn't leave me feeling weird like some other anti-nausea medicine. I am really lucky to have a doctor willing to prescribe it for me. I have to warn you though, it is a little pricey. My insurance covers it, but even the co pay is high for it.

I am not sure about this, as I have never been diagnosed MVPS, but I would guess that is just the term that describes people that have dysautonomias relating to a mitral valve prolapse. A mitral valve prolapse is basically a malfunction of the valve separating the left ventricle of the heart from the left atrium. Since it does not work correctly, when the ventricles contract to pump blood out of the heart, the blood will often regurgitate back up into the atrium. This means that the heart is not pumping effectively, so there are many dysautonomia like symptoms that can occur. My guess is that MVPS is a collection of symptoms that occur with a MVP, but again, I am not 100% sure on that. If you do have a MVP vs. just plain POTS, it might make a difference in treatment. A MVP can be heard when a doctor listens to your heart sometimes, but I think Echocardio grams will show them the best. But a lot of those symptoms that you listed for MVPS coincide with POTS. I am not sure about it though, maybe someone else here has been diagnosed with it.

I would really suggest you get yours out in a hospital. I don't know your exact situation, but if it is anything like mine was, you should have it done at a hospital. I had mine out in a hospital four years ago by an oral surgeon. All four were impacted, but they were starting to shift my teeth so they had to take them out. All my docs felt like it was okay, so I went ahead and did it. Afterwards, my BP was really low and HR was really high so they gave me 4 bags of fluid within just a short period of time. They told me it might be best to stay overnight, but that I could go home if I wanted after I was a little more stable. I decided to go home, but it set me so far back. I had to have a PIC line and 2 liters of fluid everyday for about 6 months just to get me back to normal. Apparently the anesthesia just really messed things up. It was a pretty rough experience. I don't want to scare you though, because it might be fine. I just wanted to warn you that you should be cautious.

Are you by chance on Mestinon? I know that is a weird question, but I had the same problem on mestinon. I went from a HR of no lower than 95 to a HR no higher than 60. I even got into the low 50s, and so I had to stop taking my hr meds for a while. But it was really strange because it started about 2 weeks after starting the mestinon. I felt so incredibly weak too. My doctor finally told me to stop, and when I did, my heart rate and energy went back up to the levels I was at before the mestinon. They don't know why it happened, but it did. I guess I just had some strange reaction to it. Anyways, just something to look out for if you are on mestinon.

Yes, I have heard of it. In fact, a doctor in New York that I went to who was a POTS specialized said he recommended it for me because I had a very low blood volume even on florinef. The two drugs act a little differently. Florinef helps your body retain salt and fluid better so that you can increase volume that way. I think that erythropoietin actually increases the red cell mass. Along with the increased volume, I have heard that it also seems to have a vasoconstictive effect. I have not found a doctor here who is familiar enough with it to try it though. I know I have read about some people trying it and having tremendous success with it. But it is very expensive and does have to be injected, so I think it is harder to get than florinef.

I get this same thing too! With the stiff joints and everything. I wish I could tell you what was going on though. I have asked my PCP and he said unless I was having bad pain in my joints it was probably circulation or neurological thing. But he really doesn't have an extensive knowledge base when it comes to these things. I think I will ask some more docs when I see them. I will let you know if I find anything out.

I was pretty lucky in that I had a doctor willing to help me with my nausea relatively quickly. I had bad nausea for probably 6 months before my doctor finally realized I needed some extra help. I was losing so much weight and constantly dehydrated, so he prescribed me Zofran. It has really been a huge blessing. I still have nausea to this day (worse at some times than at others), but the zofran has helped me deal with it for like the past 3 years. I would ask your doctor about some sort of anti nausea. It just has been such a relief to me when I have unrelenting nausea

Hey I was wondering if anyone knows of a good cold medicine that doesn't potentially cause tachycardia? I have been hit with a really bad cold, but I am hesitent to take any meds because I have had a few doctors tell me not to take cold medicine because it can exacerbate the tachycardia. Usually I just don't take anything, but I haven't slept well for the last few days and if I don't get some relief/sleep I don't think it will be good. I know there are cold medicines that are are for people who can't usually take them because of high blood pressure, but I wanted to know if you guys had found anything helpful that didn't make you tachy. I wouldn't think it would be a huge problem, but since numerous doctors have warned me, and I have a tendency to get really really tachy, I thought I better steer clear of most cold meds. Anyways, if anyone has any suggestions, let me know. Thanks!

Thanks for posting that article, it seems really interesting. I get really really bad canker sores too. And it usually correlates to times when I am feeling worse. And I get sore throats/swollen glands when it happens too. I have had canker sores the size of nickels. It is horrible! And I get them in the back of my tongue/throat. It is really strange, and uncomfortable!

Yeah I am usually around 96.7. Which means that if I had a temp of like 99, I would be feverish, but most doctors don't know this, so it is good to be aware of it.

Sorry Kitsakatsa, I was on .8mg! I would take .5 mg in the morning and .3 at night. I think my doc realized that was way to high and now I am just (ya, just!) on .5 mg, .3 in the morning and .2 at night. I didn't realize how high my doses are until I read how relatively small other peoples doses are! As far as building up blood volume, fluid intake is key, but for me, only limited. FLorinef seems to be the best way for me. I think the best way to determine dose is go up slowly and just finding the point that you feel the best w/o side effects.

Yes I have this problem too. I think that it is blood pooling in the feet for me. Do your calves hurt too when this happens? For me my feet hurt most, but my calves ache too. My feet turn purple and cold, and they have a really slow capillary refill so I am pretty sure it is the blood pooling. I wear waist high compression stockings which seem to help. Also, when I get home and can lay down, I put pillows under my feet to keep them elevated to help with the pooling. This seems to help a little bit. Nothing really completely gets rid of it for me, but these things help.