Introduction And Questions Pots

[Guest maia]

Hi Everyone, I was diagnosed in sept of 2009. Since then it has been a battle finding anyone who knows anything about POTS. I had to stop seeing the MD who diagnosed me because I couldn't get to his office anymore and for a year and a half I have been trying to get help with the POTS. I finally had a few good days after being on an antibiotic for something different which helped the pots and made an appointment to go back to my original cardiologist. I'm in central MA and no one, and I mean no one! around here knows anything about this. I finaly yelled at a neurologist enough that he will consider that I have pots and he is sending me for tilt table testing. I'm finding this rediculous because even the doctor who runs this clinic and will do the testing is not a specialist in pots and only does diagnostics... I am really considering not going-whats the point? I know I have it, my old cardiologist knows I have it, and even when this testing confirms it he is not capable of doing anything about it. So frustrating! I should add that at least now I can get up and move around. For most of the last 2 years I was pretty much incapacitated and couch bound and unable to even unpack after moving into my house after I was diagnosed. I was diagnosed when I was completely unable to stand or sit up. It took 5 trips to local ER's and going to an old doctor that I used to work with and demanding that he admit me for someone to even consider there was anything wrong with me-all while being completely unable to stand for even one minute. I have repeatedly been in the ER since then for chest pains wanting to make sure something else wasnt wrong-I did not find out until recently that this can be a symptom of pots-only to have cardiologists tell me that they did not know anything about pots and had not even heard of it since med school. cardiologists! I find it absolutely insane. I've also found out that when I have any kind of a cold or infection the pots goes nuts. Unfortunately though when I have had to go to the er for situations like this no one will treat anything once I tell them I have pots because they have no idea how it affects people and what could be pots or something else.

Sorry, I have about 2 years worth of **** that needs to be vented. I'll stop for now with that... I have some questions if i may...

Does anyone know any doctor in massachusetts that is knowledgeable about pots? I'm really sick of being told it is all in my head/anxiety/having to inform doctors who still dont believe that it makes you so tired its hard to even function on a basic level nevermind all the other symptoms and affects...

I saw on a posting that there is a support group at newton wellsley hospital. can anyone give me info about this?

does anyone else have exacerbations of pots when they are sick?

does anyone have a cna or anyone to help when they are ill? I'm a single mom and really need some help sometimes)

did anyone else have to stop taking fludrocortisone because it made them have eating issues/blood sugar issues?

Should I put a list of symptoms anywhere?

Sorry for the ramble, long post, vent, etc... its been a really rough 2 years.

Can't take beta blockers, fludro, pindolol, taking prednisone so I can get up and function minimally, no other meds, tons of med sensitivities, question maybe vaccine induced many years ago with a remission and then this whammy, food allergies, environmental allergies, small fiber neuropathy, scoliosis, apparently normal mri... hypo glycemic normally, hyper on fludro...salt makes me flush though I used to crave it like crazy...I'll stop there... feel free to ask questions or offer answers or chastizement for the long post(lol)

and hello! and im here with you fellow potsies!

[misstraci]

Hi and welcome! sorry you're sick and having to be here; me too. I can't find a doctor who cares, listens, or understands POTS so I understand. I went to the ER about 5-6 times in a 3 months period because I honestly thought I was dying. No one ever made me feel less scared, they only made me feel "crazy" by trying to tell me that i had an anxiety disorder. If only I had a dollar for everytime I've heard that!! Anyways, I can't answer any of your questions, sorry about that, just wanted to say Hi, welcome, and that I understand some of the things you have experienced and are going through.

Good luck and feel better! smile

[sue1234]

Welcome, Maia! You'll find low blood sugar is pretty common amongst us POTS people. It is a VERY big part of my health, but had it for probably the last 20 years, and POTS began 5 years ago. I'm not sure if/how they are connected, but I'm thinking they must be somehow.

[Guest maia]

Thank you both for the replies! Misstraci, oh i hear you about the feeling like i was dying and being treated like a fool. im on a mission to change that! i think ive found out that in my case anyway, the feeling like im dying has turned out to be an infection. oddly with no elevated white count or fever levated beyond a point and a half higher than usual. im wondering if that is part of the autonomic dysfunction. not sure where this infection was or by what but treated successufully both times by flagyl. go figure!

[HopeSprings]

Welcome. Interesting that antibiotics help you. Do they take care of the POTS symptoms fully? Have you been tested for Lyme? Do you have thoughts on why AB's might be helping?

[janiedelite]

Hi Maia,

Here's the link where we have a list of docs who treat dysautonomia in various states and countries: http://dinet.org/physicians.htm

It's usually a good idea to get testing done that validates your symptoms and illness for disability purposes and in case you need to get into a specialist that requires prior testing. My TTT was done at Mayo in Rochester. I was monitored the whole time with meds, IVs and qualified staff nearby in case I needed help. Most facilities run their TTTs the same way.

I've tried and failed lots of meds but finally am getting some symptom relief on desmopressin/ddavp. Keep pushing for answers and results! I'm glad that you found DINET.

[Guest maia]

Hi thankful, i am going for some testing in a couple days. i really dont see the point to it because i have already been diagnosed with numerous cardiac tests, rhythm strips, holter monitors, event monitors,and a bunch of other stuff to rule out a lot of other possibilities, but im curious to see if they can tell what kind of pots so ill do it. My problem has been that i cant find anyone to tell me what kind of pots this is and rule out a lot of other things that can either contribute to tachyness or cause it... so we will see, maybe these will shed a little light and lead in a direction that can either confirm or eliminate other things as causes or contributors...

[Godsgal]

Hi there...I'm sorry about your frustration and the fact that you are so sick. I just wanted to note that you have crazy allergies and flushing and it would be worth investigating whether MCAD is the cause of your POTS. Of course, you may want to get ruled out for carcinoid and pheochromocytoma. But after that, I would highly look into the mast cell activation. I found out that is what is causing my POTS and it has changed my life for the better. And you just happen to be in MA...which is near THE head doctors in mast cell disease at Brigham Womens Hospital Dr. Marianna Castells and Dr. Akin. They are in Boston. And I thank God Macks Mom and Sarah4 on here helped me see that is what was causing my symptoms.

[janiedelite]

Hi Maia,

I totally understand how you feel about having gone through so many tests already. When I went to Mayo, they tested me for any illness that can cause POTS including amyloidosis, diabetes, cryoglobulinemia, anemia, carcinoid syndrome, autoimmunune diseases, acetylcholine receptor antibodies, mast cell disorder, and more. But they also did other testing to determine if the sudomotor or vasomotor small fiber nerves were damaged (sweat-controlling nerves and blood vessel dilation nerves), including a sweat test and a QSART. They also did qualitative sensory testing to test for general small fiber neuropathy.

You're right to want to see if there is any underlying pathology to your POTS. I was so fortunate to go somewhere that would do all of this testing. Commonly, POTS can be idiopathic, post-viral, autoimmune, and diabetes can cause small fiber neuropathy as well. Unfortunately Mayo came to the conclusion that having mono in 2006 caused my POTS, but I've had symptoms that still can't be explained as well. Unfortunately, sometimes if you know the cause of your POTS you still won't have all of the answers you need.