misstraci Posted May 17, 2011 Report Share Posted May 17, 2011 Hi everyone.I have just joined your website and just (a week ago) been diagnosed with POTS/vasovagal syncope. I just wanted to introduce myself. I'm Traci and live in Atlanta GA with husband, two kids, and a dog. Work fulltime (when possible). I've been struggling with my mystery illness for over six months and have been to every specialist imaginable with no concrete answers. Everyone had their own opinion as to why I am constantly lightheaded and feel like i'm going to pass out. Multiple people assumed I had nutritional deficiencies because I'm really little and almost everyone "diagnosed" me with anxiety/depression no matter how hard I tried to convince them I'm happy/content and it's not that. Finally last week, I got a concrete answer and it was that I have POTS and vasovagal syncope. I am still trying to figure it all out, I had never even heard of this before. Also, I'm not totally convinced that that is all that is going on with me because I am having other symptoms as well. I've tried to increase the water and salt like everyone says and I was put on some pills but I need to follow up with my primary care. I guess that's about it.Nice to be here and to meet you all!!!! I have two quick questions, if you don't mind.1. Is there a specialist that deals soley with this POTS condition? 2. Does anyone have weird head feelings such as pain, pressure, numb, weirdness in their head? I am convinced I have a brain tumor (no I'm not a hypochondriac either) but my MRI from about 9 months ago was fine and no one wants to do a repeat.Thanks, talk to you soon Quote Link to comment Share on other sites More sharing options...
potsgirl Posted May 17, 2011 Report Share Posted May 17, 2011 Welcome Traci!It's great to have you as a new member on the forum. I know you'll get a lot of support and information from this site. If you haven't already, I would read through the info on the forum's home page. It also gives you a list of specialists that deal with dysautonomia/POTS and the symptoms/conditions that can sometimes go along with your POTS diagnosis. Chronic fatigue syndrome, fibromyalgia, small fiber neuropathy, there are many related problems that may crop up or that you may be experiencing now. A lot of us have ended up going to a POTS specialist for the most help. I've been to the Mayo Clinic in both Rochester, MN and Scottsdale, AZ. Rochester has a department that deals with people with our kind of illnesses. You said you were given "pills". What medications are you taking? Headaches and "coathanger pain" (where the pain comes down your neck and across your shoulders) is common in POTS, and some meds will make those worse, or better, depending on your and what the best treatment is for you as an individual. One thing that's sure about POTS is that it's different for everyone, so make sure you're treated according to what's best for YOU.Again, welcome to the forum, and we look forward to seeing your posts and exchanging ideas and support. Usually they'll always be someone who has experienced something similar to what you have or are going through, which is so nice to know you're not alone. We're sorry that you're suffering from POTS and vasovagal syncope, but glad that you're enriching our community!Cheers,Jana Quote Link to comment Share on other sites More sharing options...
misstraci Posted May 17, 2011 Author Report Share Posted May 17, 2011 Thank you Jana!I will go look over the information on the home page as well as look for the doctors near my area.The pills I mentioned and I said it vaguely because I'm not sure they are actually used for what I have going on but long story short, I went to an urgent care clinic the weekend before I was diagnosed. The doctor got my hopes up. After explaining in detail everything I had been going through he said "I've got it, I know what's going on here" and he then "diagnosed" me with post partum depression. I was so upset. Yet another person making a fool of me. He told me to go see a psychiatrist and everything would improve. I started crying and felt like yelling at this man. So, he prescribed me cymbalta and klonopin for my "depression". I went home and, of course, in my heart, i know I do not have depression nor anxiety and definately not post partum depression. I decided to fill the pills because I felt what do I have to loose, maybe they would at least do something for me. I've tried everything, why not try these too. Well, I'm still taking them because I mentioned it to the cardiologist who performed my tilt table and explained POTS to me and he said that cymbalta was a type of vasoconstrictor and klonopin does something with the nervous system so try them out and see if they help. I would love to talk to an actual doctor though and get a combination of someting that is truly going to help in this situation.Thank you for your response. I am happy to be a part of this community and look forward to talking with everyone else.Traci Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted May 17, 2011 Report Share Posted May 17, 2011 I have CFS and now POTS. The best doctor has been an Integrative MD that understands these illnesses and how to support the body in healing and also help symptoms with supplements. Also, the correct blood tests to find out things you need. Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted May 17, 2011 Report Share Posted May 17, 2011 Congrats on a diagnosis! That's a great first step. The Dinet website and forum will prove very valuable to you, I'm sure. I think you will find that we all have "weird" things that tend to make us worry, but they are usually related to our dysautonomia. I also have had the wierd pains/feelings in my head. I've suffered from headaches for many years, but since POTS I'll get "different" pains/feelings. It took me about a year not to constantly feel that they must be missing something. But now all the different oddities that seem to come, seem to go as well, which is rather reassuring for me. Hopefully you will be able to find a good physician you are comfortable with that will help you manage things. Thanks for introducing yourself - oh, and I think there are some others on this forum from your neck of the woods, so maybe they will be a good resource for you. Quote Link to comment Share on other sites More sharing options...
misstraci Posted May 17, 2011 Author Report Share Posted May 17, 2011 Thank you both sallyblooms and tablet. It's nice to talk with you all and have something in common. Hopefully after awhile, I will also be convinced that this is it and just deal with it and stop thinking the worst. I actually already met one person in my area, she emailed me and was very nice.Thanks guys, talk to you soon! Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted May 17, 2011 Report Share Posted May 17, 2011 Welcome !!!Unfortunately you might note that a lot of us have dealt with Doctors who did not listen and treated us poorly. It's part of the long road to diagnosis. I'm so glad you found us!! There are a lot of supportive people on this site and I hope you can find some of the answers you seek. Take care and enjoy your summer Quote Link to comment Share on other sites More sharing options...
janiedelite Posted May 17, 2011 Report Share Posted May 17, 2011 Welcome misstraci! You asked if there were doctors who specialize in treating POTS/dysautonomia... on the DINET home page there's a link for "Physicians List":http://www.dinet.org/physicians.htmHopefully you can find someone in your area. If there's no physician near you, you can always start a topic on the forum asking about doctors in your city. I'm glad you've finally gotten at least a real medical diagnosis. But you're right in wondering if there's something underlying your POTS symptoms. POTS is a syndrome of a collection of symptoms that you fit into, and a specialist should be able to rule out the more common causes of POTS.Good job continuing to advocate for yourself even though you seem to have a lot of responsibilities with your family and work! Quote Link to comment Share on other sites More sharing options...
Victoria Posted May 17, 2011 Report Share Posted May 17, 2011 Welcome misstraci! Having a concrete diagnosis is at least half the battle. I'm glad you found us! Quote Link to comment Share on other sites More sharing options...
Magnesiumgirl Posted May 17, 2011 Report Share Posted May 17, 2011 Hello!Welcome, and may things go better for you now Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 18, 2011 Report Share Posted May 18, 2011 Hello and welcome, Traci! I'm glad you found us (but sorry you needed to).There aren't any POTS specialists in the Atlanta area. If you want to see a specialist you might want to consider going to Vanderbilt. There are some good doctors there who might be able to help you and also pass on helpful information and instructions to your primary physician back home in Atlanta.As for the pain in your head, it could be migraines or headaches caused by dysautonomia. You might also be getting strange pain sensations if you aren't getting adequate blood flow to your head. Increasing water and salt intake could help, as could compression hose or midodrine.I hope you'll be able to find something to help relieve some of your symptoms.Rachel Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted May 18, 2011 Report Share Posted May 18, 2011 Hi Traci!!!I totally have and have had pain, pressure, numb, weirdness in their head. Ugh, it is horrible right???I was totally convinced i had a brain tumor and I did have a brain MRI an MRA, an EEG and all were normal. So weird because it feel like something so, so bad is happening up there right?The head pressure is terrible!!!I am seeing a wonderful neuro now and she would like to do some testing about the pressure and she'd like to help with the headaches. I'll move forward with that in a feweeeks and keep you posted.xo718mom Quote Link to comment Share on other sites More sharing options...
misstraci Posted May 18, 2011 Author Report Share Posted May 18, 2011 You all are wonderful and so welcoming, I appreciate it!!! I am glad to know that I am not the only one who struggles most days, if not, everyday. Makes me feel so not alone. Rachel, thank you, maybe going to Vanderbilt is the best option, I surely would like to meet with someone who knows what they are talking about unlike most of my recent experiences 718mom, that makes me feel good to know you also have felt those feelings, keep us posted about what happens with the neuro.Thank you all, glad I found you!!! Quote Link to comment Share on other sites More sharing options...
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