yogini

Hi, Check with your doctor or pharmacist, but it is pretty common to take a couple of months to adjust to birth control pills. The first month is usually the worst. Feel better soon, Rita

I don't know anything about this drug, but it's usually a good idea to talk to your dr if you are experiencing unusual symptoms. If you're worried about losing the med, maybe you could look online to see what the side effects are (to see if this is a normal one) and/or talk to your pharmacist before talking to the dr. Sometimes new drugs take a little getting used to, so hopefully that's all it is.

Apart from a few episodes here and there, my BP and HR have been regulated by meds since being diagnosed. I still felt pretty miserable even though my BP and HR looked "normal". The main symptoms I was having were dizziness, fatigue nausea and headaches. For a while, my doctors even kept insisting that I was fine and these symptoms weren't POTS-related. After a lot of back and forth and seeing many different specialists (and finding this forum), I finally figured out the symptoms WERE indeed POTS. So I'm someone who can attest that it is definitely possible to have symptoms even when your HR and BP aren't acting up. I agree with Dayna that something is off in our bodies - it's like the meds we take can help with actual HR and BP, but not necessarily whatever is going on in our bodies to cause the HR and BP to be off in the first place. (Not to mention that the meds themselves have side effects. I know that my BB makes me really tired.) You may want to check out the DINET main page - there is a good explanation about the mechanisms of POTS and the various symptoms.

If you look at the definitions of POTS on Dinet and NDRF, they say that POTS "may include" or "often includes" other symptoms, which means that other symptoms aren't always involved. If you read through old posts, you will see that there are few others with just a high HR, although this isn't very common. You are very lucky if you don't have any other symptoms! I think an ablation is one of the options for treating IST, but not the only option. In some cases it totally fixes things, but in some cases not. One of the secertaries at my work had an ablation and it helped her a lot, but still has to take meds and has episodes. Since it's at least possible that you have POTS, be sure to research and get multiple opinions before going the ablation route.

Hi I get these, although not as severe as you. I take an extra beta blocker until it goes away. You may want to check with your dr about when to go to the ER. It's probably different for each person, but I was told not to go unless I had a high HR that stuck around for a couple of hrs and didn't go away with extra meds.

I've struggled with acne on and off over the years. It was definitely worse when I was taking florinef. I've different prescription meds over the years, until I finally found a great dermatologist who put me on a routine of cleansing with Glyderm cleaner, using Ovace gel every day and Differin every other day. Then there was another med she gave me for spot treatments, which I can't remember. This routine worked great for me, but I stopped it when I went on birth control.

Maybe I'm confused here, but my understanding of POTS is that you have it if you have the increase in HR upon standing. That is the only symptom you need. You don't necessarily need any other symptoms or to not be "functional" in order to have POTS. Part of the confusion here may be that different practitioners may have a different understanding of what it means to have POTS. My experience is that even among doctors that treat many autonomic patients, some know much more than others.

It seems that no two cases of POTS are alike. I often feel different than other people here because I don't have any other health conditions (EDS, GI issues, etc.). But I'm pretty sure I have POTS. I wouldn't rely too much on the polls here. The number of people who respond is too small to be statistically meaningful, and I think the people who tend to respond are the ones that are affected by the particular topic. My guess is that many (probably most) people on this forum ARE able to drive. POTS affects people at all different levels - there are lots of people here who are highly functional (and probably many more out there that aren't even affected enough to need the forum). You may want to do a search on IST vs. POTS. It's come up from time to time before. My understanding is that the treatment is pretty similar for both conditions, although maybe people with IST go for ablations... This is not to say you DO have POTS...I hope you're able to get to the bottom of things.

I'm told I have terrible veins too. Lisa, I actually had a similar experience to you when I went to have blood drawn last Nov. The lab tech must have pricked me 20 times before she was able to draw blood. It hadn't been that bad before, so I think this woman must have been particularly incompetent. I think it becomes tougher for them to find good veins if you get lots of IVs and bloodwork, which probably doesn't help any of us. I will have to remember some of your suggestions for next time.

I take a very low dose of midodrine as needed. I'bve only taken it a handful or times, but I have found the exact opposite. I feel I have to go to the bathroom more. It also makes my nose run and, not to be too graphic, makes me have gas. But, then again, I have a pretty weak bladder to start off with. I agree with doctorguest. From what I understand, when your body isn't producing enough urine it's because you're dehydrated or your kidneys aren't working properly. You may want to check in with your doctor on this one.

I'm experiencing severe lightheadedness. Although my POTS is up and down, it's rare for me to have such a huge increase in symptoms... and when I do, I can point to a specific cause. I'm hoping it's the change in season. I know that in the past I've felt really lightheaded right before a thunderstorm. Part of it may also be that I went from 1/4 pill atenolol in Dec to 1 pill in Jan. Although this is a ow dose, I think it's more than I need and lowering my BP...although I have been on this dose for 4 months now. Unfortunately, I won't be able to try reducing it for another few weeks. Hopefully whatever it is will calm down soon because I'm supposed to hop on a plane next Friday...midodrine is helping some...keeping my fingers crossed...

Hi, I've been feeling extra dizzy over the past few days. Normally threre is some kind of explanation for my dizziness - stress or my period. This time there doesn't really seem to be any reason. I am wondering if it's the rain or the change in weather, since it finally seems to be warming up here in the northeast. Is anyone else feeling it? -Rita

I would agree with the others and tend to not have any kind of line or port - sepsis just seems to scary. Is there any way to slow down the lyme treatment (as opposed to ending it) or take it without an IV? I think this is ultimately a question that you need to answer for yourself, because you are closer to the situation and know more details. Hope you feel better soon.

I can understand how you feel. Just yesterday I tried on a pair of jeans I bought in October and couldn't pull them past my hips. This is because I am on more medicaiton and haven't been able to exercise. It is really a miserable feeling. How much florinef are you taking? Is it possible for you to try a slightly lower dose? Can you incorporate some exercise into your routine? It is great that you have found a med that is working for you- many people on this forum are not so lucky. I agree with Maxine that it is better to weigh a little more and feel better. I am not familiar with Adderall, but it is not one of the more common POTS meds. If you are going to play around with your meds, you might want to try some of the more commonly used medications before trying something like Adderall.

YES! I do get this from time to time. It lasts for a few hours and then goes away as mysteriously as it comes on. Sometimes loading up on fluids helps, but sometimes not.

I get this symptom - I can feel my heart beating in my stomach, on the roof of my mouth and on my teeth, among other strange places...but most often it's in my ear. This symptom happens from time to time, and it is probably related to POTS. I would go ahead and get it checked out anyway just to be sure, especially if it's a new symptom.

Hi Tessa, I won't repeat the advice that some of the others have given you -- but was wondering, have you tried wearing compression stockings? Many of us use them to keep up our BP.

Actually, it's the other way around for me. Right now my morale is low because all I do is go back and forth to work and have little energy for anything else. If I don't work full time, I will be able to do other activities, volunteer, spend time with friends and family, light travelling, etc. I'm not planning to be homebound if I take time off! Part of the reason why the disability route probably isn't appropriate.

Is it doctorguest or doctorquest? Anyway, welcome! This place is a lifeline for many of us. Thank you for taking the time to provide your insight and medical perspective on the forum. Also, thanks for the other help you've given to Dinet. Like most, I'd never even heard of POTS before getting sick. The medical information here has been invaluable and helped in my improvement. -Rita

Thanks, guys. I am covered by long and short term disability through work. I'd have to check, but not sure I'd qualify right now. I was out on short term disability for 3 months in 2004 and for a few weeks earlier this year. I've been back at work for several weeks and am able to go to work these days...it just doesn't leave me energy for much else. It is making me sad, especially since I was much more active just a few months ago. People are leaving my company left and right, so they would probably grant me a leave of absence. It's just that if I went out on leave, people would stilll be calling me about work, so I wouldn't get the total break I need. People in my office usually work intensely for a few years to get training and then move on to something else. I've stayed longer than I planned because of my health. It's time to transition to something else, I think I just need a long break first. I'm not one to make rash decisions, so I'm just mulling this idea over...though it's sounding better and better. If anyone else has any ideas or advice, I would love to hear them

Have any of you considered taking time off work to recover from POTS? My POTS is moderate, but I feel like working is such a struggle for me. I can do it, but it keeps me from doing much else. Although I feel lucky to be able to work when many others can't, it has really taken its toll on me. It has been especially hard over the past few months - I worked really hard in Dec and have been in a POTS hole since. I have been interviewing to try and find a less stressful job, but finding that my current job may be as good as it gets. I had a "light bulb" moment the other day and started wondering why I am doing this to myself?? Since then I've started thinking about taking some time off. This is a scary thought, but the idea is sounding better to me every day. I think I can manage it financially for a little while. And I know my health would improve a lot - if it could go back to what it was in December I would be thrilled. Just wondering, for those of you who work, whether any of you had thought about doing this or had any advice?

I am not sure why people are attacking one another personally here. I for one am glad that this topic is being discussed - it doesn't come up often and I certainly find it more interesting than many of the topics that keep reappearing. I'm not a moderator, but if there are people in the POTS community that are uncomfortable taking SSRIs or other meds then they should feel free to express themselves here. These feelings need to be expressed and discussed. I don't think there is anyone on the forum that has so much influence as to discourage someone from taking a med by expressing their opinion - if there was such a person, it would be one of the moderators or veterans who've been here for years. More than anything, I am glad to see that so many people feel so strongly about using all available resources to get better. I am glad to see the strong reactions to the post and relieved that most of us are of a similar mindset. I don't think its feasible for people (other than perhaps the mildest cases) to treat POTS naturally. I think those who don't use all available meds are doing themselves a huge disservice, but that's my opinion. I think the strong reaction here is in part because we care about one another and want to see each other get better.

I just wanted to add two thoughts. First, many, many people on this forum take SSRIs for POTS. Yet in all my time on the forum (and all the complaints about doctors), I've seen very few posts about being stigmatized for using them. This does not seem to be a major issue. Secondly, I can see how doctors could speculate that we have a mental illness before we are diagnosed. But once we are diagnosed with POTS, we can show our doctors medical articles about how SSRIs are used to treat POTS and/or get the prescribing doctors to speak to the other doctors. If the other docs still think your issue is mental and not physical, then it probably means it's time to find a new doctor. These points are not necssarilty meant to influence any particular person, but thought they should be raised.

I agree with Katherine that SSRIs are pretty well-recognized for the treatment of POTS. Even my cardiologist knows about them - he doesn't know about any other meds except for florinef and BBs. As for the medical community at large, they aren't the people to help us - most of them don't even know that POTS exists. For me, the most important thing is being as comfortable and active as possible. When I look back on my life, I won't worry about what doctors thought about me, but rather the life I lived and the experiences I had. Life is short and I don't want to spend any more time than I have to feeling sick or being stuck at home. A couple of little pills for me make the difference between being barely able to walk around the block and being able to live a very full life for someone with POTS. I haven't tried SSRIs, but have seriously considered them and wouldn't hesitate if needed. Of course this is a personal decision...most of all, it makes me sad that the ignorance of doctors and the public is discouraging people from trying medicines that might help them.

I was in Barnes and Noble this afternoon and saw a book on the bestsellers' shelf called "How Doctors Think," by Jerome Groopman. It's all about how doctors make their diagnoses, and the reasons for misdiagnoses, so seems to hit on the frustrations that many of us have with doctors. It sounds like it also offers the lessons that some of us have learned the hard way - to keep looking until you find the right doctor and to be proactive in your own care. I'm posting this in part because I thought it would be of interest to many of you and also because I'm curious to see if any of you have heard or read about it. I didn't buy it, but probably will soon. Here are the first few paragraphs of the New York Times book review. The full review is at http://www.nytimes.com/2007/04/01/books/re...amp;oref=slogin "This elegant, tough-minded book recounts stories about how doctors and patients interact with one other. In the hands of Jerome Groopman, professor of medicine at Harvard and a staff writer for The New Yorker, these clinical episodes make absorbing reading and are often deeply affecting. At the same time, the author is commenting on some of the most profound problems facing modern medicine. Groopman powerfully conveys the complexity of the physician?s role, the anxiety and uncertainty that dog his every step, the difficulties that arise in understanding patients, eliciting their stories, making a diagnosis. One of the messages of ?How Doctors Think? is that patients need to be active participants in their care; and without question the best physicians encourage, and even demand, the involvement of patients. Yet a paradox lies at the heart of Groopman?s subject: although the medical profession has long recognized that doctors communicate poorly with patients, physicians receive little training to improve that interaction. Historically, medical education has regarded communication skills with an indifference that approaches contempt. It?s unscientific, it?s hand-holding, it?s bedside manner. Yet it?s clearly important. Groopman focuses on one aspect of the doctor-patient interaction: how it influences a physician?s diagnosis, and even his ability to make a diagnosis at all. His stories show us instances where a doctor makes snap judgments that are wrong ? and right; where past cases distort present perception; where rapport with, or dislike for, a patient alters diagnosis or care. (This leads Groopman to one of the few direct recommendations in this book: if you get the feeling your doctor doesn?t like you, find another one.) Unlike such simple errors as prescribing the wrong dose of medicine or reversing an X-ray, Groopman writes, misdiagnosis is ?a window into the medical mind,? revealing ?why doctors fail to question their assumptions, why their thinking is sometimes closed or skewed, why they overlook the gaps in their knowledge.? According to one study he cites, as many as 15 percent of patients receive inaccurate diagnoses, a finding that matches research based on autopsies."