SarahA33

Hi again. You may find this past thread helpful:

Hi. Just wanted to say I'm sorry that your going through a rough time right now. It's really frustrating finding the appropriate medical care for our condition. Many of us need to travel to find a specialist that can help. I can't remember if I sent you a list of specialists in MA? If I didn't please let me know and I can do that. Maybe It could be the doctor you saw for your tilt table isn't accepting new patients? 

Also, some doctors perform catecholamine labs during a tilt table, but most have you go to a regular blood draw lab, like quest, to have it done. The protocol is typically to lay flat, free of stress, for about an hour, and then have your levels measured. So your primary or cardiologist can order this. Perhaps you could then send these results along with your tilt back to the Dr. Who did your tilt or another specialist? 

Hi iamerror--here is a list of support groups from the DINET site, maybe there is someone in your area http://www.dinet.org/support-groups/

Hi there, 

I'm so glad that you got an appointment. Until then, please know that we're here for you on the forum.  Is this a primary doctor or a specialist you'll be seeing? on our website we have some some great information for diagnosing pots and dysautonomia, also a symptoms list page where you might find it helpful to print out and bring to your appointment with you. Also, many doctors do an active stand test, which records your vitals during the appointment throughout a ten min period, it might help to ask for that in order to get a referral to a specialist or for a tilt table. Maybe there is something they can do to help you with insurance. We've had past threads about this you can search through them above. 

Hang in there, Kat. Things will get better, this illness requires a great deal of strength and courage which your displaying every day.  Would your partner be willing to go to your specialist appointment with you? Sometimes it can help if a doctor explains the complexity and difficulties that are faced with this condition.

Wow, so exciting to see all our newest members. Can't wait to get to know you all, we have an entire community waiting to help! 

Hi, there. Unfortunately many of us know what your going through. Fortunately blood draws are easier than iv's but still a huge pain. Here's a past thread on similar issues but you can also do a search in the upper corner for more: http://www.dinet.org/forums/topic/27303-trouble-with-ivs/#comment-253561 At my lab, the tech's are now using a portable "vein viewer" It looks like a large flashlight that lights up your veins which allows them to choose the most viable one for the blood draw. Maybe you could ask if they have anything like that available?  Welcome to the forum!

Oh, no - sorry to hear about the midodrine reaction! Treatment of our conditions includes so much trial and error, and like Kim mentioned it's quite difficult.  Have you tried Florinef yet? It basically works by helping your kidneys to retain sodium and therefore increases blood volume. http://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/

Hope your feeling better today

Hi, Ringsmackie - sorry I'm late here but wanted to welcome you to the forum! Hopefully you've recovered from your trip to the dentist - are you feeling okay now?

5 hours ago, SScott said:

I had a TTT several months ago and was diagnosed with POTS. I wasn't really nervous for the test, just ready for some answers. I had an IV , the nurse told me just in case they needed to raise my heart rate in case of an emergency. I was in a lying down position for 10-15 min & then was in a standing position. This portion of the test was supposed to last 45 min unless something happened. It took me less than 10 min in this position until I passed out. The nurse said my heart rate dropped to the 40's. Before this I have never fainted, but had so many symptoms. Palpitations, heart flutters, chest pain, left arm numbness, extreme fatigue, light headedness, brain fog, bummed out mood, nervousness in my chest, and panic attacks. Basically when my blood pressure dropped my heart would be working harder causing all my "fight or flight" symptoms. I was prescribed midodrine to help ease these symptoms. Midodribe has been a life saver, but the side effects take some getting used to ( chills and constant goosebumps, and a tingling itchy scalp) 

Welcome, Sscott - I have the same side effects from midodrine. Do you take it regularly?  There is another medication you could look into, Florinef.

On 2/8/2017 at 5:18 PM, Awkwardspondy said:

I had an IV inserted for my TTT so they could give me fluids after fainting. I have been fainting since I was a toddler and am now in my mid 20s, so this test was long overdue. Anyways, they started the IV before the procedure and gave me half a bag of saline in the procedure room after fainting. I had a very hard time recovering, so my nurse started a new IV in recovery for more fluids because my original one stopped working...grrr
I would not have been able to leave the hospital without the IV fluids, because everytime I tried to sit/stand up, I started to faint again. The TTT resulted in a diagnosis of POTS and neurocardiogenic syncopy  (NCS).

Hello, Awkwardspondy - welcome!

So sorry to hear your struggling right now.  I went undiagnosed/misdiagnosed for years, so I understand the hopeless feeling you describe well. Many of us here on the forum have had experiences with doctors who misdiagnosed POTS/Dysautonomia as anxiety and our symptoms dismissed.   In the hyperadrenergic form of POTS, adrenaline, a stress hormone is produced in excess. It is incorrect to say that anxiety is the primary cause of dysautonomia symptoms, It can be a symptom, but isn't the cause.   From what I understand, General Dysautonomia is life-altering, not typically life-threatening.   Once you have insurance again, I'd suggest finding a doctor through our list asap as it can take a while to get an appointment. When you find a knowledgeable dr. on autonomic conditions & receive a diagnosis, chances are you'll notice some improvement with treatment.  This can be a really discouraging and overwhelming process so I'm glad you've found the forum.  -Sarah

Hi, Welcome to the forum. What is your normal resting heart rate? Does your HR decrease at night? Bradycardia can be horrible, sorry your having to deal with that, plus your other symptoms! I experienced bradycardia for a short time because my electrolyte's were off. A metabolic panel showed elevated potassium. Since we can't give medical advice on the forum,  I second Kim's suggestion of notifying your doctor and maybe he/she can order a holter monitor for you, some wear it for 24-72 hours as they can pick up more information than an ekg performed in the office.  Take care, Sarah

Welcome, everyone! We're glad you've found your way to our corner of the internet.  DINET launched a new website in December 2016 as M2G mentioned above, now DINET is reaching over 4 times the amount of people!  Please take a look at the website when you have a moment and utilize all the POTS and dysautonomia(s) resources available.  I look forward to getting to know you all, and hope you find DINET to be as supportive and informative as I have. Let us know if you've got any questions! -Sarah

Hi!  Thanks so much for the update,  Tyler is still an inspiration to us here at DINET, as are you.  Its great to hear that his migraines are gone.  We've had a couple members begin ivig. Some have done quite well!  

hi DG! There's a syndrome, Wolff-Parkindon white, It's a pre-excitatory syndrome. My guess is they'd have picked this up on the EKG's by now but you may want to check out when you have a sec. Have you tested her calcium recently? Those can impair sodium channels, too. All the best to you and the girls!

https://ghr.nlm.nih.gov/gene/SCN9A#conditions

I have hyper pots, and high bp. My POTS dr. recommends 5-7g of sodium and 2-3 liters of fluids daily. The members above described the reasoning for this perfectly. Of course we're all different though. Welcome to DINET!  

Hi, MJ - welcome to our community! Sorry I'm a bit late here. Have you seen anyone at Duke? I just shared a link on our DINET Facebook page this morning that was a Dysautonomia Presentation from Duke.  Diana Harris, a NP at Duke has experience with syncope. https://www.dukehealth.org/find-doctors-physicians/diana-m-harris-acnp-bc-msn  also there is Dr. Camille Frazier-MillsI know they were going to be opening a Dysautonomia & Syncope Center, I would call the main Duke contact # and ask for more info. Unsure if your in close proximity to these doctors, Dr. Royce Bailey (Hendersonville)  Dr. John Fortunato,  Winston Salem, NC,  336-716-WAKE 

We feature Dysautonomia-related support group's on our site, there is one in NC. Here is the info: http://www.dinet.org/support-groups/

I'm sorry to hear of the struggles you've faced, I hope that you'll soon find relief. Take care, Sarah

Hi again, I just remembered more of that convo about drug metabolizing with my doctor. He said the iron has a form of metal in it which is the reason for not absorbing well, also said that antacid's have that as well. I was trialing a med, Provigil, which is a weaker form of a med like Ritalin, but he said that type of medication can cause a metabolizing issue if taking it close to a dose of another medication.

Hello! I have the same problem with long-acting medications, they always wear off in about a 4-6hour period. My doctor told me I metabolize medications quickly, I tested positive as a rapid metabolizer in bloodwork. He also said that certain medications and vitamins can counteract and cause an absorption issue - he asked me if I was still taking iron (which I have been on for almost 2 years now) he said iron can decrease your body's ability to absorb the medication. Are you taking any supplements/vitamins? I would check with your dr or pharmacist about splitting the metaprolol er, it's not typically advised to break those forms of drugs.

There may be a couple medication options to talk to your doctor about. Sometimes one type of beta blocker works better than another. There are many BB options, however, Propranolol in low dose is recommended for POTS patients. http://circ.ahajournals.org/content/120/9/725 , http://www.neurology.org/content/early/2013/04/24/WNL.0b013e318293e310.abstract  Another option is a drug that was just recently approved, Ivabradine (corlanor) I'm on both of these medications, Ivabradine changed my life.  I had refractory tachycardia and palpatations for years, on mass doses of bp meds until ivabradine was added. https://www.verywell.com/ivabradine-corlanor-1746411 

Hi, Blackdiamond -  If you go to the main dysautonomia discussion page, where you can see all the post listings, and click in the top corner "create new topic" that should start a new post for you. Please feel free to send me a PM (in the very top corner with an envelope) if you have any questions. Sarah

DINET works with another pots/dysautonomia website,  pots UK.  They offer information,  support groups,  and doctors who specialize in our community on their website.  Best of luck to you and your family 

Hi there. I don't have MCAD or mastocytosis, but I think prostolandin's are affiliated with an activation of the inflammatory response, production of pain, and fever. I was told that when there is inflammation or infection that WBC's basically rush to the site where tissue is damaged in an attempt to prevent tissue damage and prostoglandin's are elevated in all acute inflammatory levels as well as vasodilating effects. Vasodialating effects from prostaglandin, I was told along with adrenaline spikes it's the reason for my flushing and redness, and play a role in increased blood flow.  I had a previous high histamine level, but the last series checked was normal, my prostoglandin's were high and tryptase normal. As far as I know, the above blood work doesn't need to be high, once or consistently, but symptom's are vital. My local hematologist wasn't experienced in mcad, so I think he followed the guidelines for mastocytosis.  http://www.brighamandwomens.org/Medical_Professionals/education/publications/ppd/2012/April2012/mastocytosis-center.aspx, http://mastcellaware.com/

.  Do you have joint inflammation, or pain in your body, including in your GI tract? Prosotoglandin's protect your stomach by excreting necessary acid's from stomach lining members. They also play a role in asthma and flow to your kidneys.

katcanny-- in somee pots patients yaz can be contraindicated . I hope we referring to the same yaz (birth control), . Here is an article by Dr. Raj, dinet medical advisor and pots specialist  if you scroll down to the pharmacological treatment of pots there is an explanation there: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/

http://europepmc.org/articles/pmc3413773

,

oh, no. In our recent website upgrade, we lost a few posts that we are still working on rretriving. In this topic, a woman was asking if anyone knew of Bev Karabin, as her sons initial appointment was with Dr Grubb, but follow up was schedule with NP. Runnersmom if you see this would you mind chiming in? Well anyway, Dr. Grubb's assistant bev is supposed to be fantastic. She co-authors a great deal of his publications with him. Last summer I watched Bev's series on a dysautonomia organization website -- Educational Information and 504/IEP Planning for the Dysautonomia Student conducted. sponsored by DYNA kids

http://www.dynakids.org/Documents/ModafinilPOTS.pdf?_ga=1.21930232.2144663939.1484406703

Hi, nemesis, 

Please read about familial dysautonomia here,  http://www.familialdysautonomia.org/facts.htm from the familial dysautonomia foundation.

FD is a rare genetic disorder of the autonomic system that primarily affects people of Eastern European Jewish heritage. There is a blood test that can confirm if you have the gene,  and a Dr.  Would do a clinical exam to look for scoliosis and lack of tear production.  The other test to confirm is a lack of a response after receiving a histamine injection (normally redness and swelling would occur). Was this doctor a specialist that said you had this? 

Hi there!  DG,  I'm sorry to hear this news      not entirely sure if sleep paralysis affects BP, but I know insomnia can cause hypertension.

https://webcache.googleusercontent.com/search?q=cache:WZLjrOPanxgJ:https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet+&cd=3&hl=en&ct=clnk&gl=us

POTS symptoms can change over time, possibly she could need a change in bp meds?    This is a great article by our medical advisor, Dr. Raj, where you'll find a lot of info on hyper pots and other types. http://journal.frontiersin.org/article/10.3389/fphys.2014.00220/full  I don't see anything related to hyper pots & bp, but that would be a good question to submit to him for our Med Q&A Column in the newsletter! DinetandForumInfo@dinet.org