SarahA33

Thanks to all that have signed. POTS U.K. is getting close to their goal of 5,000 signatures but still need additional supporters. Please consider signing if you haven't already.

Hi, Katcanny, I think a lot of us have gone down that path of "what if's" and sometimes when we feel so physically exhausted, it's hard to pull yourself out of that thought process. I've been there a million times, so try not to be too hard on yourself. We all just do the best that we can. Your son is lucky to have such a compassionate, considerate and loving mom. I'm sure you would do the same for your mom and son without even thinking twice, and we all need help sometimes. When I first joined the forum someone gave me really great advice, cherish every good moment you have and cling onto them when things get hard. I feel like this reminds me there is hope. We've had hundreds and hundreds of members who came here feeling the same way and got better over time. We don't always hear about their progress because they've moved on to a new phase in their lives. I couldn't get out of bed for months, then I found the right doctors and treatment and I was able to regain some control of my life back. Hang in there and always know there is someone here to listen!

Hi, Tiffany! Welcome to DINET. Sorry you have to wait so long for an appointment, months feel like years when your feeling poorly. Like Katie mentioned, it's uncommon to wait for POTS specialists. Luckily, from what I've experienced, it's the initial New Patient appointment that is sometimes a 1+ wait and the established visits are easier to book. I'm not sure if your interested in seeing if these dysautonomia doctors can see you sooner, but they are in the boston area I believe. Dr. Roy Freeman, Dr. Paul LeLorier and Dr. Peter Novack. Here is the DINET physician list for you to search through also: http://dinet.org/index.php/physician-list

Oh, Wow! It's so great to meet everyone We'd love to hear from you!

Hi, P8d, Sorry that your struggling with #'s like these. My doctor recently split my Fludro dose in 1/2 - I take .05 in the am & in the pm. It does seem to be helping with regulating my pressures somewhat. I've been on Corlanor for almost 17 months now. Did you know it was approved in the US a while back? My cardiologist writes a script then I get it filled at a local pharmacy. It had to get a prior authorization, which included records submitted by my dr. that I had tried a beta blocker, a calcium channel blocker and an EKG showing sinus rhythm. I ordered it from Canada in the beginning, I was so happy it got approved here in the states.

Hi, I'm not sure if this helps or not, but I've had a PET Scan and it was normal. I had a ton of cardiac tests, too and the only one that came back abnormal was a bubble echo showing I have a PFO. I developed POTS symptoms at 19, and I'm now 30. I struggle with labile BP's now, but within the first 7 years I rarely had a pressure under 150/90 and it ranged into 200/120. I know exactly how you feel, these numbers are terribly scary. I'm not sure what changed, but something did because I now bottom when standing too quickly or for too long. I was originally dx'ed with Orthostatic Hypertension. It does make treatment hard, I carry midodrine (raises BP) and clonidine (lowers bp) with me in my purse. Wishing you the best. Sarah

Medication & Allergies List Name: ______________________________________________ DOB: ____/_____/_____ Pharmacy: ____________________________________________________________________ Keep your health safe by sharing this list with your doctors and pharmacist. Bring this list to Medical Appointments and keep it with you in case of an emergency. List all current medications (RX & OTC) Medication Dose / Frequency Reason/Additional Information Allergies Medical & Food/Environmental Reaction X:__________________________________________________ Date Updated: ________________________________ *For information & Resources on Dysautonomia and POTS, please visit www.dinet.org

If anyone would like a word version of this please let me know

Hi everyone, Our Dysautonomia community has just finished celebrating Awareness Month this past October. We at DINET wanted to mark this occasion with a small token of our appreciation to our members for their support and participation. We've designed a Medication and Allergy List that you can print out and use at your disposal.

Our friends at POTS UK have asked our board of directors to share this petition with you all. Please take a moment to sign this petition for urgently-needed research to understand & treat life-altering health condition POTS. This is an opportunity to get research in the UK off the ground through such an incredible consortium of local and international clinicians, leaders and patient groups by applying to the MRC (Medical Research Council) for funding. https://www.change.org/p/dame-sally-davies-fund-urgently-needed-research-to-understand-treat-life-altering-health-condition-pots?recruiter=76157910&utm_source=share_petition&utm_medium=email&utm_campaign=share_email_responsive

Hi again, What is polycythemia? I've had the same exact problems with my BP. I was originally dx'ed w/ Orthostatic Hypertension also. But, as time has progressed it's turned into hypo - so I guess the correct term would be Orthostatic Intolerance? I was always pre-syncopal upon standing, however, I've also now actually started passing out. I too have had a very high HR for many years, and recently I've been experiencing bradycardia. My dr. thinks it's from the HR lowering med, Ivabradine, which worked wonders for my tachycardia. There is somehow a link that Florinef (indirectly) could be making me more susceptible to the medication, because we realized the other day the bradycardia started a short time after I began Florinef. I don't disagree but don't understand his thought process so if you have any ideas on this I'd love to hear them. When I passed out about 3 weeks ago, My BP and HR were both low. I stood up and then fell backwards. I went to the ER because I didn't feel right after I fell, and ended up with a concussion, then passed out again at the ER. My vitals were much like yours. This is different than the events we talked about above, and I saw my dr. and he said with both a low HR and a low BP, neither can compensate for the other. I totally understand how scary it is when something new begins, and I hope it was just a one time thing for you.

Hi, katcanny, welcome to DINET! A lot of patients describe the symptoms you listed above. This is a symptoms list from the dinet.org site, yours are listed here: http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms I hope the tests all turn out alright. Have you tried non pharmacological measures yet to see if it helps your symptoms, like Increased fluid/sodium intake, compression socks, or elevating the head of your bed?

Hi, P8d. Glad to hear from you - sorry not under better circumstances though! My POTS doctor said he's got a lot of POTS patients flairing during the change of seasons. Sorry that your feeling so poorly. Hang in there! Sarah

Hi Stephanie. This happened to me for years before I started Clonidine. I barely slept before finding this forum. My doctors treated me for insomnia, but nothing helped. When I read about others experiencing the same issue I knew it was adrenaline surges. I started Clonidine which is a BP med that works by blocking Norepinephrine (adrenaline) and it was amazing to finally sleep. Sometimes people use a pure beta blocker like Propranolol, but this didn't work for me. Sorry you are experiencing this, I understand exactly how you feel.

TMP, I had this happen in May for 3 days. I'd stand up and my hearing and vision would fade, then my arms and head/neck would twitch and I'd drop to the floor, as soon as I laid back down this would stop. I was totally conscious during these attacks though, were you? My BP was very low supine and I couldn't get a reading sitting up, so I went to the hospital. I did find out that I was severely dehydrated, my hemoglobin was 15 so my blood was basically like syrup and my platelets were through the roof. I could barely sit up to drink at home, so it was definitely from not taking in enough fluids in my case. I just couldn't believe that all happened in 3 days. Like DADof said, I improved too after 4 liters of saline and Florinef. My POTS dr. told me it was cerebral hypoperfusion. He said basically a healthy person has 5 liters of blood, while I sit at 4. So, there is a heightened sensitivity to blood volume changes that can cause this type of crash. There are different types of Circulatory shocks/Collapse though, Neurogenic, Hypovolumic & Septic Shock. I hope your feeling better now.

Welcome to the DINET community, everyone!

I loved it too, Corina. I thought it was really helpful and interesting. I like how they broke down the various types of salt. It's still a challenge for me sometimes when sorting out salt to sodium, etc. So I use this converter. http://oxsalt.org.uk/db/?page_id=37

Hi, everyone. This an entry from Dr. Blitshteyn's website, director of the Dysautonomia Clinic & DINET Medical Advisor. Jill Brook, Nutritionist, breaks down The Salty Truth! http://www.drblitshteyn.com/blog/ : 10 Salty Facts for POTS patients

Hi, Green. I don't have any personal experience with this, but I just wanted to see if you were feeling better now. Hope you are! -Sarah

Hi, there, I believe every state has a period of time that is recommended to refrain from driving after syncope, I've seen some states recommend 3 months and others up to 1 year depending on if you have a medical condition or if the event was unexplained. I'd suggest reaching out to your doctors, and if they feel you are able to drive safely, write a letter stating this and submit to the DMV, or maybe they'll need to fill out a form? Have you ever fainted while in a seated position? This was from the CA DMV site, https://govt.westlaw.com/calregs/Browse/Home/California/CaliforniaCodeofRegulations?guid=I32A84770D46811DE8879F88E8B0DAAAE&originationContext=documenttoc&transitionType=Default&contextData=(sc.Default

Hi, Amyschi! Well, ivabradine is working too well now it seems! I'm experiencing bradycardia for the first time, I had a hr of 37 at the doctor's office this past Friday. I never saw this one coming. He thinks I'm overmedicated w/ the Ivabradine and also a bit from Clonidine. So, I cut the dose in 1/2. Hopefully it's the medication, if my HR hasn't increased in 2 weeks I'll need an implantable loop recorder put in. How are you doing? I hope feeling as well as possible!

Beautifully said, Dancer. The forum has helped thousands of people find knowledge and encouragement when they needed it the most. Like Katie mentioned, your experiences and willingness to share part of your world with us has made a difference as well.

A big welcome to you all & hope that you have a safe and happy Halloween!

hi guys! feel free to check out the dinet facebook page for more warriors recently added, and a few more to come.

Welcome, everyone!