SarahA33

Hi there, Katie, listed under pharmacologic interventions, side effects of mestinon/pyridostigmine are urinary urgency and frequency. Not sure if this was what you were experiencing, but hopefully it's resolved. I hope that you are continuing to have positive results from this! ASH Position Paper: Evaluation and Treatment of Orthostatic Hypotension, Dr. Biaggioni http://onlinelibrary.wiley.com/doi/10.1111/jch.12062/full

Hi, Pumpkin! We missed you! I was so sorry to read about your struggles with your BFM. This is such a difficult condition to manage without extended family/friends adding extra stress to our lives. You definitely need support and encouragement when your struggling and feeling so poorly. We're certainly here for you! Even when we try to focus on other things, our bodies remind us that we're sick. So, I can see how having a person who is so disrespectful and uncompassionate to deal with could take it's toll. I’m just sorry you have to feel attacked and be confronted in such ways, and I’m sure most of us here can empathize with you to some extent. I've had the "but she doesn't look sick" card pulled by family and it's horrible and hurtful. However, there's only so many times you can explain this condition, and at this point it sounds like she is baiting and poking. Whatever is going on here, these are her issues and it's not your fault. I think all the others have made really great suggestions. I feel boundaries could prove useful here, and Lily mentioned something important. We only have control over our behavior, not anyone else's, so we can change how we react to them. All my best, Sarah

hello darling, I'm so happy for you also! I've had similar results with this medicine too. Its really given me my life back in so many ways. I celebrated my ten year anniversary with a trip to NYC a few weeks ago and managed to make it up 7 flights of stairs to a rooftop restaurant. I walked around 2 1/2 days straight! last summer I began riding my bike after I started this drug, I've been on it for exactly a year. I wish you the best. The only negative is that it has a lot of interactions with other medications for the potential of an arrhythmia called long qt syndrome, so i suggest researching all new meds. you mentioned in another topic you have ist also right? My symptoms of ist are virtually gone on the ivabradine. I'm so grateful. Anyway, I'm truly happy for you that you e found relief. Like we talk about on this forum, its really about trial and error with meds until finding the one(s) that give the most benefit. Do you experience any brightness? There's a side effect called luminous phenomenon because it affects the if(funny channel) connected to the retina. The natural light is a bit bothersome when I'm outside, so I i just make sure I've got sunglasses. please keep us updated! Wishing you all the very best ;-) Sarah

Yes, Lewis that is great news. Really happy for you!

Thanks so much, Katie! 2015 Heart Rhythm Society Expert Consensus Statement on the Diagnosis and Treatment of Postural Tachycardia Syndrome, Inappropriate Sinus Tachycardia, and Vasovagal Syncope http://www.heartrhythmjournal.com/article/S1547-5271(15)00328-8/fulltext Sheldon Et all, Dr. Grubb, Dr. Raj, Dr. Stewart,Dr. Friday, Dr. Mayuga 2015 For our members with Vasovagal Syncope, Dr. Raj Feb 2013 Confounders of Vasovagal Syncope: Postural Tachycardia Syndrome http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3522867/ POTS & IST - http://jaha.ahajournals.org/content/3/2/e000700.full Postural Tachycardia Syndrome and Inappropriate Sinus Tachycardia: Role of Autonomic Modulation and Sinus Node Automaticity Dr. Nwazue 2014 Diagnosis: Tilt VS Stand Test: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3478101/ Diagnosing Postural Tachycardia Syndrome: Comparison of Tilt Test versus Standing Hemodynamics Dr. Walker Plash 2014 NCS, POTS, Orthostatic Hypotension linked to Antiphospholipid Syndrome (Hughes Syndrome) Dr.'s Blitshteyn& Schofield 2014 http://lup.sagepub.com/content/early/2014/02/25/0961203314524468.abstract Orthostatic Hypotension http://content.onlinejacc.org/article.aspx?articleid=2423750 Dr. Ricci 2015 Midodrine: Midodrine: https://www.nice.org.uk/advice/esnm61/chapter/Full-evidence-summary Orthostatic hypotension due to autonomic dysfunction: midodrine National Institute for Health and Care Excellence 2015 Midodrine Efficacy in Orthostatic Hypotension. Dr. Mike Joyner, Dr. Sandroni 2015

Hi Percy! Yes, I would agree with Yogini re: seeing a dr. about the neck issues, on another note, have they ever done a Doppler/ultrasound of the carotid arteries to look at blood flow? So sorry that you have all of this going on, it must be really scary when the blindness occurs. What is your BP like when this happens?

Hi, Kris, I have great relief from my BB -- propranolol, because I have high levels of NE, also. My understanding is that BB's are beta adrenergic blocking agents, a type of med that block the body’s normal response to stress. I had a doctor once explain that it basically blocks adrenaline and mutes the sympathetic nervous system,they're particularly useful by blocking the physiological symptoms and minimizing the pounding & rapid hr's, tremors, cold sweats, etc. The other medicine that has been useful for me is Clonidine, as it decreases activity in the Central Nervous System. Here is a really good article: http://www.healthrising.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/clonidine-kataprex-nexiclone-duriclone/ http://www.dinet.org/index.php/information-resources/pots-place/pots-mechanisms - - Link to our DINET Site that discusses OI & Mechanism's The following excerpt is from Dr. Raj's newest paper, Postural Orthostatic Tachycardia Syndrome: Beyond Orthostatic Intolrance. He mentions elevated Cat Levels w/ the hyper form. Have been diagnosed? "Central Hyperadrenergic POTS Although the elevated sympathetic tone in POTS is often secondary to another pathophysiological mechanism, such as neuropathy or hypovolemia, it can also be the primary underlying problem [19]. Furlan et al. reported increased sympathetic tone in patients with POTS [52]. Resting sympathetic nerve activity, measured by microneurography, is elevated. A spectral analysis index of sympathetic function and plasma norepinephrine are sometimes higher at supine rest and increase more with HUT in POTS [52, 53]. Plasma norepinephrine levels should be determined in patients with POTS while in steady state in the supine and upright positions (at least 10 min in each position). When measured during upright posture, norepinephrine is elevated in many patients with POTS (>3.55 nmol/L (600 pg/mL) and sometimes >5.91 nmol/L (1000 pg/mL)), consistent with the sympathetic neuronal activation elicited by standing in these patients [19]. This is sometimes used as a criterion for the “hyperadrenergic subtype” of POTS." http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html

Hey Sam, I was wondering how things were going for you. I understand what your saying about being proactive and trying to find the best treatment possible. I went through many Beta Blocker's before finding the right one for me. Maybe this article can help you? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758650/ It's a bit older, but my dr. at CC just told me the same information. I hope your PCP will be helpful w/ the brainfog meds. It must be so difficult trying to work on your PhD while struggling with these symptoms. Here is a newer paper written by Dr. Raj, he mentions Provigil (modafinil) , incase your PCP may find it useful. http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html Mine was denied initially, then approved w/ a prior authorization. Anyway, I hope your upcoming appointments go well! Sarah

Hang in there, Sean! How long have you been on the Ivabradine? This medication has been the only one my HR has responded to. On average, I've gone from 120's to to 80-90's. I take 5mg am/pm. There are some days mid afternoon when my heart just pounds, and I feel like the medicine is wearing off. I have been told by my dr. it's short acting. Do you notice any relief after taking it in the am?

Hi there, so sorry I will be thinking of you and wishing you all the best. I so wish you weren't going through this right now, we're here for support when you need it. Sending you a big hug and positive thoughts.. xo http://circ.ahajournals.org/content/119/6/880.full -- thought you might find this article of some interest b/c it mentions EDS and Aortic dilatation of >4.0

http://www.dinet.org/index.php/physician-list?view=physicians not sure why that happened

Hi Angelloz, I always feel terrible when my pulse pressure's are close together too -- sometimes before I take in my fluids for the day I'll have a 10-15 point difference btw the top and bottom # too. I'm relieved for you that IV fluids have helped. Like the others have said, hang in there and don't lose hope. I've made a lot of progress with my POTS but still have periods where I take steps back, with no rhyme or reason to it. I don't get it, I don't change my medication routines, exercise routines, fluid intake, and yet I can have a flair up. I remind myself though that I'm doing the best I can for now and to think about one day at a time. Take care of yourself Sarah

http://www.dinet.org/index.php/index.php?option=com_physicianlist&view=physicians&Itemid=276 Hi Tanja, Here is a link to our physicians list. I believe in the past members from the SD area have traveled to Dr. Ahern, in La Jolla, who treats Dysautonomia patients. Sorry to hear you had a flare up, welcome to the forum. Sarah

http://forums.dinet.org/index.php?/topic/11863-physicians-in-las-vegas/#comment-108479 http://sunrisehospital.com/hl/?/602989/Tilt-Table-Test http://www.nevadaheart.com/node/90 http://www.desertspringshospital.com/hospital-services/cardiac-care-institute-at-desert-springs-hospital hi roxy, it looks like they perform tilt table testing at these facilities, perhaps you can check who the physicians are that supervise these tests and go from there? Best of luck to you

roxy, I believe there is a branch of the Cleveland clinic in Las Vegas. You may want to call both their cardiology and neurology dept. And ask if any doctors specialize in autonomic disorders. also, local universities may offer testing. I'll try to see if I can find any information. Sarah

hi roxy, welcome to DINET. Here is a link our physician's list. http://dinet.org/index.php/physician-list Sarah

hi draven, I'm so happy that you've been helped by our organization. Educating physician's is one part of DINET'S mission. We have amazing volunteers who work so hard to make sure these brochures are sent to the medical community. Thank you for sharing your story with us, its always so nice to hear things like that. I think there is an aid/device you can use to help put the compression socks on. I've seen them discussed in past posts. good luck with the topril. I'm truly happy for you that you've found answers, I hope you can start feeling better soon. take care, Sarah

Hi there! I see this original post is from 2012, I feel badly that you've been going through such a long fight. Do you have a follow up scheduled with Dr. Kinsella? I'd just like to offer some personal experience. I've left office appointments too with feeling like there were things left unsaid. What I've found most helpful in those situations is to work on what I can from the last appointment, and write down a list of the 3 most important things for the next one. I am on the ER Topamax, and I've got word finding difficulties from it. It's controlling my condition though, so the benefit outweighs the side effects. It takes 4-6 weeks for Topamax to start working and build up in your system and 2-3months to experience full affects. So, it required patience for me. I understand your hesitations, however, maybe topamax could provide you relief. We talk a lot about trial and error on this site! If I'm thinking of the same Dr. Kinsella, I'd really consider talking to him about your concerns regarding autonomic issues. He's spoken at the Dysautonomia International Conferences and has done seminars on Autonomic issues,. We have members on the forum who see him, maybe someone will see your post and offer some input. Anyway, I have supine hypertension - meaning my BP rises when I stand, headaches, dizziness, and temp. regulation issues. Heat intolerance mainly, though, so I know what your going through. Good luck with your upcoming job. Sarah

Welcome to DINET everyone!

Hi Sean, Welcome to the forums, Great that your appointment went well with Dr. Barboi. Other members have had positive experiences, too. For the fatigue issues, Provigil has been rx'ed for pots, etc. Here is a recent thread on it - http://forums.dinet.org/index.php?/topic/27481-cognitive-dysfunction-in-pots/#comment-254746 Re: your question about BB's and fatigue, everyone is different, and I've seen a majority of member's and personally gone through a trial and error process with med's. I took a very high dose of propranolol for a long time and I really had no fatigue from it, however, Metoprolol, a different Beta, was exhausted on and couldn't stand up. So, don't give up right away try to talk w/ your dr. about how your feeling. Which BB are you on? Take care, Sarah

Hi, Sam, I'm so glad Dr. Arnold was able to get back to you! That really is awesome that she's sending along information to your doctors, it really sounds like your headed in the right direction. Yeah, I figured that since the Modafinal/Cognitive function study was still open, she wouldn't be able to talk about that. As I just said above, I just recently had to stop the Provigil (modafinil) mainly due to insomnia and racing thoughts, but I have been on Propranolol for years and also a new HR Lowering Med (Ivabradine) and had no issues with Tachycardia while on it. Unfortunately, most of the medications are a trial and error process, and it's taken me a while, but I'm on a really good combination. So, it's definitely possible. It's requires adjustments, but I'm just thankful that help is out there. Good luck to you and I'm glad you've found the forum! Sarah

Well it makes sense, prescription and non prescription stimulants are going to have a vasoconstriction effect. My understanding is that they basically work by enhancing dopamine and other neurotransmitters. I did very well with Provigil in the beginning for about 3 1/2 wks (no tachy), but then recently (in the past week) it started causing insomnia and a feeling of chaos in my mind. I have had very high NE levels (in the 2,000's), so I'm not sure if that may have anything to do with it. Glad you have something that works for you Rama. Are those the only things you've tried? Other than a cup of coffee I'm guessing. My pots dr. mentioned if Provigil didn't work, we could try nuvigil, I think that's longer acting, so I'm not so enthusiastic. Take care, Sarah

Hi, Sam, Best of luck to you and I hope you will be able to reach out to the professor for further insight. Good luck with your Phd. If you do have POTS, it seems like you may be fortunate in the sense that you have some of the best doctors in the world at your fingertips who can help you. Take care, Sarah

Hi Sam, you might find this thread helpful: http://forums.dinet.org/index.php?/topic/27481-cognitive-dysfunction-in-pots/

Hi, Ebrahimi, (and all) Welcome to the forums! Amongst a community of almost 5,000 members, and just in your topic alone you've already seemed to identify with a few who know what you're going through, I'm sure there will be others, so hang tight. I just wanted to say hi and offer some resources that you or the other members may not have seen yet. Also, on DINETs main page, we have a section for PAF links kim mentioned she had started Droxidopa recently (Kim I'm hoping your noticing improvements!), I've heard is supposed to incredibly promising. I was wondering If you had tried that as of yet, I know another option is Midodrine and also Octreotide. I'll include some info and studies at the end. Best of luck to you also, kpflma, on your exercise regimen. Taking your dog for walks must be therapeutic in a sense for you both. I'm lucky if I can make it to the mail box some days! I like walks, and I bring my great dane,... but like I try to remind myself, tomorrow is another day, and maybe then I'll bring my yorkie, too! - All my best to you all, Sarah a drug treatment of orthostatic hypotension because of autonomic failure or neurocardiogenic syncope" Lamarre-Cliche M1. http://www.ncbi.nlm.nih.gov/pubmed/114727996 "Idiopathic Orthostatic Hypotension and other Autonomic Failure Syndromes" Author: Mohini Gurme, MD, Chief Editor: Selim R Benbadis, MD (This is quite lengthy but covers various chapters in great detail) http://misc.medscape.com/pi/android/medscapeapp/html/A1154266-business.html