SarahA33

Oh, that's unfortunate. Shes still listed on the UNC website. Best of luck to you both!

Hi Everyone, Please help me in welcoming the following members to the DINET Community.. JoshRandall, StellaLuna, Evergreen, Lindz, k8michele, StandUp2POTS, CHAMBERS87, LStuby Let us know if we can be of help or if you have any questions! We are happy that you have found your way here and hope that you find the resources and support that you are seeking. A big, warm welcome to you all! Sarah

Becca, There is a neurologist in Chapel Hill, NC - Caroline Klein from University of North Carolina. I'm not sure how far that is from you?

Rich, My HR of around 95 is average for the day, based on a 48 day monitor. Id be interested to wear the 30 day holter again out of curiosity. I was started on 5mg bid. I responded fast to the med, but I think that most titrate up. I never had breathing problems, other than catching my breath because of the tachycardia. I wasn't able to walk up a flight of stairs previously (12) and realized I can now do that without gasping. Think its a combination of building my exercise tolerance back up and the medication. I've still got an exercise intolerance though, I can't seem to push myself further than where I'm at now with months of reconditioning. I get reminded of the very fine line with an instantaneous increase in HR, dizziness, weakness, and confusion. I'm sorry to hear about the superficial clot. Bummer. Did you stop the ivig b/c it can interact w/ the ivabradine or b/c you wanted to see the full effects of it off the ivig? Cant remember if you had the blood volume testing done by any chance? When I went to CC last year I had it done twice. Anyway,on top of discovering the low blood volume, we also discovered just how anemic I was, which I had apparently been masking in basic CBC's. Since then, I've rec'd IV Iron Infusions which has also helped the tachycardia. Take care, Sarah

Hi Kelly, I take midodrine as prn. I have the 2.5mg tablets but can 2 tablets if my BP drops every 6 hours. (max daily dose is 15mg).

Hi Sue, I'm glad that you've started this topic. I hope that you can see that you aren't alone in your feelings, also, it was good for me to read the other's stories and suggestions. You provide support to many here on the forum, those in your life are lucky to have you. I hope that when you are ready you will reach out to them, in my experience they are more understanding than we think, I've found I am harder on myself than anyone in my life has ever been. Please know that we are here for you! Sarah

Hi Puplover, Welcome to DINET. A few things that I thought you may want to talk to your doctor about. Midodrine is known to cause headaches, and I think can worsen a pre-existing condition of migraine. I experienced this in the beginning, as I suffer from chronic migraine. I am only on midodrine as a prn. I wish I had something to offer with the BP and HR fluctuations, my guess would be that it's your body getting used to the vasoconstriction (tightening of the blood vessels). We're all so different though. I hope you get this all sorted out soon, it seems like you are on the right path and that you have a doctor willing to help. Having someone in your corner who will advocate for you made a big difference for me. I noticed you are on Yasmin for BC.. in some pots patients that can be contraindicated. Here is an article by Dr. Raj, if you scroll down to the pharmacological treatment of pots there is an explanation there: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/

Hi hopeforthecure, I have a diagnosis of orthostatic hypertension that is separate from my Pots (with a hyper component). The diagnostic criteria for Ortho Hypertension (don't quote me) is I think an increase in 20 points in Systolic Blood Pressure. I remember in the beginning feeling really overwhelmed and confused by all the diagnoses. I hope you get answers with your new cardiologist and she can help you navigate, good luck at your appointment.

Hi Becca, Just wanted to clarify the rules about discussing doctors/hospitals publicly on the forum: "Doctors and Hospitals: You agree to refrain from making disparaging remarks about hospitals or medical professionals on this forum and to refrain from naming doctors or hospitals when elaborating on negative experiences. Clarifications: It is fine to make a general statement, such as "I had a negative experience with Dr. ____ ," however, per forum rules, statements naming a particular doctor or hospital cannot be defamatory in nature." The PM feature is always available. Also, have you looked at DINET's physician list? http://www.dinet.org/index.php/physician-list Sorry that you aren't feeling well atm, I hope that you find a doctor to work with soon and that some of the other members have some suggestions. Take care, Sarah

Welcome, everyone!

Hi Dancer, sorry to hear about your mom. Becoming the role of a caregiver while you are ill yourself must be so stressful. I'm sure glad that she has you! Not sure how much caffeine (if any) you are taking in, but it's a stimulant so I believe that it acts in the Central Nervous system and can temporarily make you feel energetic but then often will feel worse coming down from the caffeine, (jitters, shaking, increase in heart rate,etc). There was a study down at Brown University that says caffeine stimulates the adrenal glands to produce more adrenaline. I won't go too much further into it, but I have another study from the University of Maryland on CFS patients that should avoid caffeine all together. I drink one cup decalf in the morning, I need it for routine and the mental clarity. Not sure if that was helpful to you at all.. I cant remember if you are on a beta blocker. But if you and your doctor would like to be positive that these are adrenaline surges (Here is a link to a patients experience from the Mayo Clinic) that lists detailed instructions to determine your catecholamine levels are. https://lethargicsmiles.wordpress.com/2013/09/27/how-would-a-doctor-determine-if-i-have-hyperadrenergic-pots-all-about-catecholamine-testing-in-pots/ Also, I just wanted to throw my opinion out there that unless your symptomatic at the times of the test the results may not always show the extent of the #'s. I also had a 24 hour catecholamine urine collection that I did at home which was useful for me. I think Beta Blockers and Clonidine would be helpful to block the excess production. Everyone is different though, maybe you should talk to your doctor? Take care dancer, keep us updated if you are able to, I know you've got a lot going on. Sarah

I hear ya Kelly, I wish I Had some words of wisdom but I can only commiserate. I couldn't function at a HR of a 150 but now I'm struggling at times with a HR a 90. I wish you a happy medium and that you feel better Sorry I can't write more today I've now got an upper resp. infection that is brutal. Sarah

Jen, we have to be our biggest advocates. This was the perfect example. I second Katie -- good for you for standing up for yourself and following your intuition!

Hiya, Peace. How are you doing? As always, its great to ses you here! My cognitive issues tend to woren when I'm standing in line with 5 people behind me and I'm trying to rush, and just like yourself and I'm sure many others, while upright. I will forget what I'm saying in the middle of the conversation. I've been hit with the cognitive issues also. Last week I was at Target and my total was $12 and some change. I gave her a ten and stood there waiting for my change. I got a very kind woman who said,"Don't worry I do things like that all the time" I smiled and thought, 15 times a day at 29 y/o? Kelly, I wanted to share something (and with you all, I have a very close friend who had identical symptoms and diagnoses to mine (Her "brain fog" was #1 problem). She was convinced she had Early Onset Alzheimer's, so she had her GP sent her for Neurocognitive testing (memory, attention, visualspacil, speed, motor, and emotion.). He also asked her how she coped with her illness and her mood. She called me after the test after the test thinking she did so poorly, it turns out, the psychologist called to tell her she had an above average IQ and that cognitively she excelled despite her symptoms. I know In my case its probably cerebral hypoperfusion.. If I'm upright I can't decide to go left or right sometimes. It drives my fiancé bonkers, but as supportive as he is (most of the time) he just doesn't understand what its like for your brain to feel like it just shuts down. Its monotonous, Im sorry you all have some of these symptoms as well. Has anyone talked to their doctors about it and been able to get an answer about what may be helpful? ( Other than become supine, of course) Best of lucky everyone!

Hi VazKerges, welcome to the forum! Here is a link to the main DINET website, at the bottom it lists current studies for dysautonomia: http://www.dinet.org/ Just to clarify and as a reminder for members, here is the section from our rules concerning studies: "Soliciting: DINET does not allow advertisement. This includes, but is not limited to, medical studies, other organizations, fundraisers, products, businesses, websites, forums and Facebook groups. If you are a researcher who would like to advertise your medical study, please contact DINET. Use of our forum signifies that you agree not to use any services provided on DINET's website or forum to solicit others. Soliciting: "1. To seek to obtain by persuasion, entreaty, or formal application. 2. To petition persistently; importune. 3. To entice or incite to evil or illegal action. 4. To approach or accost (a person) with an offer of sexual services." Further clarifications regarding soliciting: It is okay for you to share your experiences with medical studies as long as you follow forum guidelines. However, it is not okay to suggest members participate in medical studies, or to post information on how members can participate in medical studies."

Hi Mike, I do wonder along with Targs about the excess stress hormone production. I know in my case, if I suddenly panic, feel overly excited or fearful of something I can immediately feel an excess of adrenaline kick in. I think for most people without an overproduction, they recover fairly quickly from an event that would trigger some type of emotional excitability. I can physically feel the effects of it for a while sometimes, tremor, increased sweating/flushing, difficulty thinking, etc. That fight or flight response is really relevant in my world. I also plan walks like yours, but mine are usually trips to the mall Anyway, I told my therapist about the thought processes and she told me that in my case that may be my way of having control over a situation where I have none. It's gotten better for me, especially since I realized I do it more in unfamiliar places. I'm just sorry that you are going through a rough patch. We are here for you, and I know that your partner is as well. She sounds wonderful, and I'm sorry to have read in another post that she has not been feeling well and dealing with some new diagnoses as well. She will be in my thoughts! Wishing you the best, Sarah

Hi hopeforthecure, Welcome to DINET. I hope you are recovering well from your recent surgery. I do know that there have been members in the past who have had low potassium, here are some past topics that might interest you: http://forums.dinet.org/index.php?/topic/19026-who-had-low-potassium-before-taking-florinef/?hl=%2Bpotassium+%2Blevels#entry174467 http://forums.dinet.org/index.php?/topic/22552-what-labs-have-you-had-that-came-back-abnormal/?hl=%2Bpotassium+%2Blevels#entry209709 Here is a link to DINET's physician list where you can search for a doctor who specializes in dysautonomia/pots: http://www.dinet.org/index.php/physician-list Sarah

I agree. I think there's a link for those of us with Coronary Vasospasms and Extra Adrenergic output for sure. Epinephrine is a constrictor. Maybe that's one of the reason's there is a higher link w/ pots patients and chest pain if cardiac testing is normal. I agree that a doctor needs to be on board! I haven't experienced the angina in public yet, as it happens at night really. I do know what it's like to experience a migraine aura in public where I slur my words and walk into things because it is like someone chops my vision in half or it blacks totally. What I have a difficult time with is scaring those who are closest to me. A lot of guilty feelings for something I've got no control over. Is MVA benign? Now that I'm on the Ivabradine I've got to be checked for long QT. Thanks for the heads up on BB's, which yes, I am on 240mg of propranolol. I don't know what I'd do without it, mainly for the adrenaline suppression, so the addition of nitro becomes even more complicated I suppose. Not sure if the episodes of CAS are often and painful enough to treat at this point. I'm glad for you that Nitro has been useful.

gjenson, hoping that you are well. Always sending positive vibes out your way.. I just had a diagnosis of Prinzmetal's Angina brought up about a month ago. I don't have CAD and don't smoke. In my case, it was the addition of the Raynaud's diagnosis and pre-existing Chronic Migraine that actually raised eyebrow's of Prinzmetal's. I've been having chest pain for a while at rest only and cardiac testing is normal. There has been some discussion of adding Nitro but we haven't pulled the trigger yet. http://www.ncbi.nlm.nih.gov/pubmed/15293589 http://www.cardiachealth.org/prinzmetal%E2%80%99s-angina Something also interesting. I recently found out I was diagnosed with Raynaud's when I was 3.. still trying to figure out how this fits into everything.

Hi Debbie, welcome to the forum! I hope that you'll find relief soon with the various medications that you are trying. The trial and error is an exhaustive process from my experience, but it's paid off and I'm grateful that I've got doctors who have been and are willing to keep trying. I will hope the same for you.. Like Corina said, our fingers will be crossed for you! I'm also sorry to read that you've had a lot going on in your world regarding family. It sounds as though things are going better though, which hopefully takes some of the weight off of you and allows you to focus on getting well and healing. Sarah

Hi Xhale, It sounds like you should contact a doctor, preferably a cardiologist if you have one, since we can't give medical advice here on the forum. From what I understand Episodes of SVT can be caught on an EKG.. do you have a cardiologist or doctor who can set you up with a holter monitor (I wore one for 30 days) to record the bouts of what your describing? Have you ever looked into IST - Inappropriate Sinus Tachycardia? Some patients can experience episodes of tachycardia and bradycardia (mainly at night I believe). http://heartdisease.about.com/cs/arrhythmias/a/IST.htm http://content.onlinejacc.org/article.aspx?articleid=1486711 I know where you're coming from with the convulsions. I was diagnosed at the Cleveland Clinic with generalized Epilepsy, which was originally misdiagnosed as Non Epileptic Seizures. They weren't sure in the beginning if they were dysautonomia related or not. I've had concussions and have also injured myself, as you describe it's really terrible. An EEG performed may be helpful for you if you haven't already had one at the ER after an event that's occurred. I'm wishing you the best. I really feel for you. I'm on medications to control the seizures, but for about 3-6 months I was having sometimes up to 3-5 a day while they were still trying to figure out what was going on. Do you have a neurologist? Take care of yourself! Sarah

Hey Rich, Doing great w/ the Ivabradine. It was certainly worth the wait in my case. It keeps my baseline HR at around 95, which is something you know I really struggled with for a long time. I still have the hr increase w/ postural challenges, (ie supine to sitting to standing) and can increase up to 140 bpm, but that was a regular day for me before this medication. I felt like my heart would just pedal off. Im pretty positive that is the IST. It's gone now. I've started a different exercise regimen, I'm building up slowly and steady. I'm bike riding and doing cardio a few times a week. It's a weird feeling for me to be off my recumbent bike after all of these years. What an amazing thing it would be to coach again. The luminous phenomenon that you are talking about, the brightness that can occur, is because of the iF channel and connection to the retina. It does affect me at times, but I put on my sunglasses and its really not a big deal. Other than that Ive got no side effects at all, it'll be 6 months that Ive been on it at the end of October. I'm doing a study right now on the effects of Ivabradine on HR response to exercise. How is IVIG going for you? Been hoping onward and upward for you.. Hopefully this medication will be successful to your therapy! http://europace.oxfordjournals.org/content/13/3/427?ijkey=3e3d4045e9ac13f7b8ea2ad5de4bbb2b78479796&keytype2=tf_ipsecsha http://europace.oxfordjournals.org/content/13/3/306 http://content.onlinejacc.org/article.aspx?articleid=1358180

Hi Smarti, As a general rule, keeping your records accessible is a really good idea. Things get lost, misplaced, etc. Especially at such a big appointment you've got coming up I would recommend having all of your records. I would have them faxed and then bring along your copies. Im sorry you've been through such a hard time. I've been in your shoes, too, this past year Ive had some lab abnormalities that have sent me to hematologists who have screened for a blood disorder called Myoproliferative. Ive tested negative for all the genetic mutations so far, thank goodness, but I see still see my hematologist every 4 weeks for further testing. I also have the hyperadrenenrgic component. I totally get how it feels to be turned upside down. When you were diagnosed with, myeldylsplactic (sorry about spelling) syndrome, did you have a shortage of red blood cells, wbc's and platelets? I remember reading about this a while back, we are opposite if that's the case - I have high levels of those. Anyway, best of luck to you at your appointment coming up. I hope that they can help! Sarah

Oh, Kelly, that's wonderful news! A bit of advice, I have those days when I'm feeling extremely well, and then I try to cram in everything I can possibly think of , and then I wind up on the couch for a week. It's a bummer.I use these days as a huge reminder when I'm feeling pretty poorly that they are just set backs. Draw strength from whomever, whenever you are able. To me, some days I feel like I deserve a gold medal for just showering. The exhaustion is unreal. You hit the nail on the head, moderation. Being the compulsive planning type that I am, I've also had to re-evaluate my goals over the years, long term goals have turned into short ones and that's okay. I still feel a sense of accomplishment when I finish them. Stress can certainly exacerbate symptoms. It's actually listed as a trigger in many of the journal articles.. I'm so happy for you that your taking that class, I hope it helps and that you'll take away a lot of useful information from it. I have coped an except from DINET's main Page POTS - What Helps, just incases you've not seen it yet. "Countermaneuvers can help to decrease symptoms by lessening the amount of blood that pools in one's legs. Useful countermaneuvers include: standing with your legs crossed, sitting in a low chair, sitting in the knee to chest position, leaning forward with your hands on your knees when sitting and tightening the buttocks, thigh and leg muscles when standing (particularly when standing for any length of time). Research shows that tensing the leg muscles while standing enhances brain blood flow and reduces sympathetic activity (van Lieshout Pott, Madsen, van Goudoever & Secher, 2001.) Squatting can also be a useful countermaneuver, although some patients report an increase in symptoms after squatting. Compression devices, such as abdominal binders and compression stockings, help to reduce the amount of pooling blood. Compression stockings should be at least 30-40 mm Hg and will work best if they are waist high (Grubb & Karas, 1999). Compression stockings should be fitted to achieve the greatest benefit. BrightLife Direct* carries affordable compression hosiery. One POTS patient has found relief of symptoms by wearing a G-suit, and she has created a website that details her experience with this compression device. Her website begins "G-suits are pants that can save the life of a fighter pilot. G-suits are pants that have 'saved' my life too." Click here to visit this patient's informative website. Correcting anemia has been shown to improve orthostatic tolerance (Low, 1994). Elevating the head of the bed 4-12 inches has helped some POTS patients become less symptomatic. It has been reported that elevating the head of the bed generates mechanisms that expand plasma volume (Low, 2000). Exercise can be helpful to those with dysautonomia. It is important that one does not let their body become deconditioned, as this will exacerbate symptoms. Tightening and building the leg muscles will help them to squeeze pooling blood back to the upper part of the body. Swimming in water has been reported to help many dysautonomics, however no one who faints should go into water alone. Yaz Exercises and recumbent stationary bikes may be beneficial to some patients with POTS. Aerobic exercise performed for 20 minutes a day, three times a week, is sometimes recommended for patients who can tolerate it (Grubb, Kanjwal & Kosinski, 2006). Getting plenty of rest is very important for those with POTS. It has been reported that some POTS patients have significant sleep disturbances (Low, 2000). These patients may require more sleep than the average person. Heart rate watches can help patients identify situations that trigger heart rate increases. These watches are available at sports stores or can be purchased on the Internet. Ice has reportedly helped some POTS patients. Rubbing ice on the body, especially on the bottom of the feet or neck, may help some POTS patients ward off an episode. Increasing fluids helps many people with POTS to feel better. Many POTS patients report Gatorade or electrolyte solutions to be particularly helpful. Drinking water has been shown to moderately reduce orthostatic tachycardia in patients with idiopathic orthostatic intolerance (Shannon, Diedrich, Biaggioni, Tank, Robertson, Robertson & Jordan, 2002). Drinking large amounts of water helps to raise blood pressure (Jordan, Shannon, Grogan, Biaggioni & Robertson, 1999). Consuming large amounts of water increases blood volume, which is especially useful in the hypovolemic and those with pooling blood. Some patients report that drinking water before getting out of bed in the morning helps decrease symptoms. Physicians suggest patients drink eight eight-ounce glasses of water daily (Low, 2000). Patients should not drink excessive amounts of water because doing so can cause essential electrolytes to become diluted in the bloodstream, which may affect heart rhythm. Increasing salt is a treatment used for many people with POTS, however salt is not recommended for all patients." http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps Hope this helps, Sarah

Hi, Hillary, Sorry that you've got a lot going on right now. This can feel frustrating,I try to remember that when one door closes, another one opens.my pots doc was also booking patients out because there such a demand for them (like a great deal of pots docs) It might help if your refering doctor could get in touch with Dr. C to discuss the severity of your symptoms, your test results, etc. It may help or call the cancellation. http://www.mcw.edu/Neurology/Faculty/Thomas-Chelimsky-MD.htm His contact info is provided in the link I believe that Dr. Chelimsky is now at Froedert University, anyone have additional info on this? I wish I had more personal information to share with you, i'm sorry. Wishing you the best of luck, we're here to offer support if we can. I hope another member may be able to share there exerpeiences with you. just wanted to welcome you to DINET! Sincerely, Sarah