Chaos

Ah yes, I see you are getting to enjoy the "do it yourself" brand of medicine that many of us have gotten to know and "love" over the years. Do you have plans to return to Duke for further follow up? Or are they willing to work in conjunction with your local physician? Some facilities tend toward just doing evaluations and aren't particularly big on follow-up or treatment. I'm not familiar with Duke so you would need to check with them I think to see how they operate. I think some people have found that it works for them to have a local doctor who is willing to learn and is willing to listen to them. Personally I don't expect my docs to know everything, but I would at least like them to be open to listening and respectful of the research I've done and the info I've found (from peer reviewed medical journals) and brought to them to help them help me. Since I haven't personally had much luck (yet) finding a local physician who is willing to work this way, I travel out of state on a fairly regular basis to one of the specialty centers to see a doc who knows this field and who works with me. I don't know that anyone can tell you what to do. Some things to consider would be: 1. see if Duke does follow up and treatment and see if that's a feasible option for you. 2. think about your local doc and if he is someone you think will be willing to learn along with you. If Duke will do some of the treatment plan for you , then he can learn as you go along. 3. Look at the DINET site and see if there are other docs in the area that are knowledgeable about POTS. A lot of times you need to see a specialist like an EP cardiologist or a neurologist with some background in it. 4. You might be able to call some local docs and ask them if they treat the condition. Or, ask around for internal medicine docs who might have a reputation for being good at treating people with more complicated diseases. They might at least be more willing to learn about your condition and therefore help you. Good luck!

Congrats and best wishes for a lovely day together on your anniversary!

Good luck tomorrow Sarah! Will be thinking of you. Please let us know what you find out. Hugs!

How did it go?

Like Hope, I take a beta blocker to keep my HR down and midodrine to keep the BP up. I have been diagnosed with both POTS and NMH. The local docs always look at my med list and see those two and scratch their heads over it until they understand my situation a little better. When I switched from Propanalol to Nadalol I was having issues with my BP going too low for awhile. Had to back off the low starting dose to an even lower starting dose and slowly titrate up. As others have said, probably best to check with your doctor, especially if you see this trend continuing.

I wonder why people get long term disability and ultimately SSDI for POTS if it's only a syndrome then? Maybe if you can bring up all the other things that go along with POTS (like IBS, migraines, etc, etc) those would help? I worked for a couple years with POTS before being put on medical leave and then ultimately losing my job. I didn't find that having a POTS diagnosis was treated any differently than any other one. Maybe having my notes from Mayo helped? Maybe your doc is just not wanting to do the paperwork to help you out.

Yes, when I finally found one who knew what he was doing, he ran quite a lot of tests for various viral titers/ bacteria etc. He also looked at my immune profile, natural killer cell function etc. IgM titer levels are usually what your average doc will look at to see if you have an active infection going on. However, if you are running high IgG titer levels, it usually indicates a past infection but may also indicate that your body hasn't been able to fight it off appropriately or that there may be a "partial reactivation" of the virus. According to my immunologist, most people will have a spike in IgG after their initial exposure but then over time it will fall off and sit at a low level. However, he says, they are finding that some people run very high levels of IgG for various viruses and they feel this may indicate that the immune system isn't suppressing them as it should. Currently there is a lot of debate about this whole topic in the field. My doc says titer levels aren't a great way to monitor viral activity but they are one of the few ways they have to do it. However, they have found a lot of the viruses live in nerve tissue and they suspect it crosses the blood/brain barrier and is in the brain. They also suspect it may hide in the bone marrow rather than in the serum so that may be why they don't find the virus actively on a lot of blood tests. If you check out the Stanford University CFS website, they have a very active research interest in the viral aspects of the disease. There are a lot of links from there that you might find helpful. A.Martin Lerner MD is another doc who has done a lot of research on viral causes/links to CFS and has some papers that you can print to take to a willing/helpful physician. In them he notes at what titer levels he feels treatment should begin with antivirals and which meds are the most helpful for which viruses. He's been doing it a long time and treated himself first when he was sick, so has a good knowledge base. Since there isn't a lot of immune research going on related to POTS at the moment that I'm seeing (other than PANDAS), I've been watching the ME/CFS research since there is so much overlap between POTS and ME/CFS and there's a lot of immune research going on there.

Gemma- I suspect most of us can relate to the experience of going to a doctor and having our questions and honest inquiries being dismissed....usually because THEY don't know what to do to help us, not because we are wrong to ask. I had a similar experience when I saw in "infectious disease specialist" when I was first sick in 2009. He totally blew me off and made me feel like a total loser. This was even a doc I had worked side by side in the hospital with, whom "everyone" thought was so great. Major drag! Imagine how happy and smirky (probably not a word but it fits!) I was when I did my own research, found an immunologist (in 2013) who DID know what to do and when he went thru my history his comment was "Shame on that infectious disease doc for not checking this out earlier. This should have been a MAJOR red flag for him to look at!" Whether it's helpful or not to find your underlying cause probably depends upon you and how affected you are by your POTS. If you are basically functioning and able to do most of your life with some modifications or meds to help, maybe it's not worth it. If, like me, you have lost most of your previous life due to the illness and you've gone thru several docs and all they have to offer and still aren't where you want to be, then I feel I have no option but to keep on looking in hopes that something else will show up that might be treatable or offer more insight into the situation. Doesn't mean I don't live life or enjoy life in other regards as well. But when I have days where I have no option but to be in bed, I might as well spend my time looking for answers rather than watching TV or staring at the ceiling. Satisfies my need to "be doing something productive" even if I can't be running around doing it like I used to be.

Good to hear from you. Was just thinking of you the other day and wondering if you'd had surgery yet and how it had gone if you had. Now I know. Ugh! Waiting is terrible!

I don't remember if it was Allegra or Zyrtec, but some of them have given me nasty headaches when I've taken them. Other times I've been able to take them with no problems. Go figure. Always just chalk it up to my wacky body doing it's wacky thing.

Sorry I don't have any experience with Verapamil personally. Is this what they put you on for the microvascualar angina? My daughter, who also has POTS, is having a ton of chest pain recently. Our POTS neuro assures me this is normal for patients, but I remember reading your post about this months ago. How did you get diagnosed? Any specific tests we'd need to request from a cardio to make sure we're not missing something? Hope you are having some success with your treatment now that you have gotten a more (hopefully) accurate diagnosis.

Like others have said, I especially notice this is I have many carbs or sneak something sweet once in awhile. It's less noticeable generally if I stick to smaller, more balanced meals but can still be an issue depending on the day.

Dianne- Looking at this website, it looks like this is a congenital thing. Wondering if you've had symptoms since childhood? Am I correct in assuming that this would be an unlikely diagnosis for those of us who had an onset of symptoms later in life, for example a post-viral onset? Or am I reading the info incorrectly?

Glad they took you seriously and sure hope the antibiotics give you some relief.

Good luck with this. Makes sense to me and what you're writing seems logical....which in our hospital system would have meant it would go right out the window. Hope you get a good resolution with this!

I think that ovarian cancer in general is one of those where it's frequently not discovered until it's pretty far advanced.The symptoms are frequently rather benign and can be confused with so many other things that it's an easy one to miss. Good luck with your chemo treatments. Keep us posted.

Sorry you are having so much chest pain Gemma. My daughter who also has POTS has been having daily chest pain the last several weeks as well. Our POTS neuro says it's very common with dysautonomia...so common that they told us not to bother taking her in to see anyone about it. Of course she talked at length to his nurse before they made that recommendation, but based on her symptoms they felt the pain was consistent with what they frequently see associated with POTS/dysautonomia. She has found that when the pain gets bad she tries to stay active to distract herself. The doc has recommended that she watch her activity level in general as well as her amount of sleep/hydration/salt etc. He seems to think if those things are out of balance she'll be having more pain. She tends to be one who is trying to avoid acknowledging that she has the condition and is still trying to live her life at 200 mph. She has noticed that there seems to be some correlation with her lack of sleep etc. Here is another thread http://forums.dinet.org/index.php?/topic/22372-chest-pain-micro-vascular-angina-new-cardio-has-interesting-observations-at-last/ where chest pain is discussed, along with the possibility that in fact there is microvascular angina occurring in POTS. It makes sense, but don't think your average cardiologist, let alone an ER doc, is going to have a clue about it.

I took it for awhile and it worked ok. Actually my allergist wrote a script for me for the 60 mg dose and I took it twice a day as the 180 mg was a bit too much for me and caused some nose bleeds when added onto the claritin etc. Like all meds for us, it's probably going to be trial and error. What works for one won't work for another, so it's going to be a matter of experimenting to figure out what works best for you. If you are sensitive to meds you might ask your doc for a prescription for the smaller dose so you can adjust the dose as you need to.

CC does have the reputation of being the top heart hospital in the country so it seems like it might be worth while getting an opinion there. It's not like it's "just another opinion" at joe's hospital down the street. However, the other consideration will be how long it will take to get that opinion and how urgently you and your current docs feel you need treatment. I think you are a smart woman who has a good feel for your own body. I suspect once you talk to this doc on Tues. you will have a good sense for whether your gut feeling is that you are comfortable with his recommendations or you think you need more input in order to make a decision. Sounds like you already have some history with him so that may help in some ways to build your trust in him.

When I worked in a hospital (up until last year) we always had water bottles around. I know they didn't want us to have food or drinks out at the desk, but it would seem like if you have water in a closed container in an area where there aren't specimens being put they would have a hard time making the argument that there is a risk it's going to get contaminated. I would always tuck mine into a back corner of a back desk where it was out of the way and out of the path of most people. If they persist I think you should pursue the ADA angle and get a note from your doc. Tell them they can either let you drink or pay you disability when you can't work any more. It sounds like they are claiming the container may become contaminated because their environment is so contaminated and therefore your hands may become contaminated? What's their point? That you might get sick from that? If the workplace is that contaminated then you are much more likely to get sick from touching the desk, the chair, the computer etc as a water bottle sitting there. And if their concern is that you might contaminate your hands from touching your water bottle before you go touch a patient, I assume you have the same "gel-in, gel-out" policy that the rest of us have so that should be a moot point too. However, having tried to have logical discussions with infection control people at the hospital, it rarely seemed to have any impact so you may have to go with getting a note from your doc. Good luck!

<<<<<<Sarah!!!>>>>>>> So very sorry to hear you are having such struggles. I know ablations are generally not recommended for POTS patients, but clearly you are having serious consequences to your heart with what's going on at this point and meds aren't doing the trick. Hopefully this Dr. Huang will be able to give you some answers and reassurance when you see him on Tuesday. Sometimes when you get to the point that you don't have other options it's a lot easier to decide what to do. Here's hoping he will know just the right thing that will help you and get you the best results possible. Sending you lots of supporting hugs and thoughts and prayers.

What type of cancer is it? Feel free to PM me if you don't want to say. My daughter had a really rare type of ovarian tumor the year before mine. Her's wasn't benign. She's 7 years out though and doing well, except she has POTS now too.

There are those of us with POTS who also seem to have a mast cell activation component. You seem to be having many of the same types of symptoms I was having a few years ago. My POTS neuro started me on a mast cell cocktail using several different meds to attack the issue and it's helped quite a bit. I know in ME/CFS patients it's been found that their immune systems are much more predominantly Th2 driven than Th1. That tends to be the part of the immune system that deals with IgE mediated allergies and mast cell issues in part. Since there is so much overlap between ME/CFS patients and dysautonomia/POTS patients, this may be a similar situation in our case although I don't know that much immune research has been done related to POTS yet. If it is the case, then this might explain why so many of us seem to have this MCAS issue. One thing that many of us have found is that it takes several different meds to deal with the issue so Claritin may help but you may also want to ask your doctor about adding an H2 blocker as well. My doc has me on Claritin, Singulair, Gastrocrom, Aspirin and Pepcid to address various aspects of the problem. I also sometimes need to add in another H1 blocker like Zyrtec or Allegra on top of the claritin during my regular allergy seasons.

My first surgery where this happened was after a hysterectomy for an ovarian mass. Luckily it was benign but that was the trigger for my POTS and the symptoms definitely started a week after surgery. They thought it was hormonal and started replacement patches and while it helped some symptoms, it didn't change the POTS. I can't imagine how miserable you must be if you can't do hormones and now you have the anxiety of cancer and facing chemo on top of it. You are in my thoughts and prayers! Major hugs!!!!

I was initially pretty good immediately after my surgeries. Had some minor symptoms, but the real problems hit 1-2 weeks afterwards. Are you going to have to do further treatment for your ovarian cancer now that surgery is completed?