SarahA33

hi, welcome to the forum. I'm on corlanor, going on about a year and a half. I haven't experienced any side effects you describe, other than the visual brightness associated with it. My thought is maybe it's too strong of a dose for you, and to talk with your doctor about going down to 2.5 twice a day and about your symptoms you have. I have read it can cause angina. Sorry your feeling this way!

A refractory/intractable migraine is considered difficult to treat, and doesn't respond to typical relief agents - basically medication resistant. I had 2 migraine diagnoses, "Intractable Migraine w/ Aura" and "Chronic Migraine" (New daily persistent known as also). I tried everything - preventative, abortive, rescue, and nothing helped except for Botox. Unfortunately, I developed severe numbness in my face and ocular side effects - blurred vision, double vision, so I had to discontinue the botox therapy. I am now looking into SPG , This is taken from American migraine foundation." The Sphenopalatine Ganglion (SPG) is a group of nerve cells that is linked to the trigeminal nerve, the main nerve involved in headache. The SPG, located behind the nose, carries information about sensation, including pain, and also plays a role in autonomic functions, such as tearing and nasal congestion. The link between the SPG and the trigeminal nerve is important in head pain. If you apply local anesthetics (or numbing medications) to block or partially block the SPG, this can be helpful in reducing head and facial pain. Another technique used to block the SPG involves using a needle to inject the SPG through an area on the cheek. This process is invasive, and usually requires the use of an x-ray machine to place the injection correctly.In the last few years, three devices have been FDA approved for performing SPG blocks. These devices involve placing a very thin plastic tube into the nose to insert numbing medication in and around the SPG. These devices, called catheters, may be more effective in reducing head and facial pain than the technique using cotton swabs and are less invasive than the injection technique. SPG blocks have been reported to treat the following conditions: Cluster headache, Migraine, Trigeminal neuralgia, Shingles, Facial pain that is atypical, Complex regional pain syndrome (CRPS)" https://americanmigrainefoundation.org/find-a-doctortreatment/treatment/sphenopalatine-ganglion-blocks-in-headache-disorders/ I'm pretty sure I'm out of options if this doesn't work. I feel for all of you suffering because it effects every aspect of my life, and having migraines like this on top of POTS or Dysautonomia makes it so challenging. Katie and DG my heart just breaks for you and your daughter. So sorry James that you now have migraines from the med. pseudoephedrine is sometimes used by POTS patients for vasoconstriction, like a Stimulant Medication such as Ritalin or Aderall. I think pseudoephedrine can actually increase dopamine, which is a catecholamine,and it can cause vasoconstriction. If you have low NE levels, my guess is that you wouldn't have an effect from it. But considering most pots patients have elevated NE levels, possibly it caused a vasoconstriction spasm... Just a theory andI'm not sure exactly how all this works so you should probably call your doctor. Like DG suggested, possibly a vasodilator used as a preventative measure (take it daily) would help. Medications like Verapamil which is a calcium channel blocker, or even a beta blocker, like propranolol or Metaprolol might be something to talk to your doctor about.

Hi, Im4God2010, Welcome to DINET. What is your diagnosis? I've never had a pulmonology test, but like Statesof mentioned, I've had heart tests (echo, bubble echo, stress test, MRA of the aorta) for occasional SOB and SOB upon exertion, which basically revealed the same as him, a PFO, and mild regurgitation & prolapse.

Oh, my goodness! So much for a quiet few days to yourself! haha! You have a great dane? I have one, also, and I do my best to keep him out of trouble, too, but as you can see by this look on his face he's probably plotting something!

Hi, Yogini, I'm perplexed by this, as a lot of others are also I think. I've had my diagnosis listed 2 ways: POTS w/ a hyperadrenergic component and Hyperadrenergic POTS. This paper was published by Raj in 2015. (Satish R. Raj - Autonomic Dysfunction Center Vanderbilt University School of Medicine, Department of Medicine Vanderbilt University School of Medicine, Department of Pharmacology Vanderbilt University School of Medicine, Department of Cardiac Sciences, Libin Cardiovascular Institute of Alberta University of Calgary) as well as some of the other Vandy researchers. In this paper he clearly lists the various components and even that some overlap under "Pathophysiology of POTS, adding a section w/ a description for Naturopathic POTS, Hypovolemia and the Renin-Angiotensin-Aldosterone System in POTS, Central Hyperadrenergic POTS, Norepinephrine Transporter Deficiency, MSA, Deconditioning, Autoimmune/Antibodies. Since this is one of the newest articles from Vanderbilt, despite what their website says, I think this is the criteria I choose to follow. I follow up with my pots specialist at the end of the month, so I will definitely ask him his thoughts! Additionally, I've also seen paper's written by Dr. Grubb where he lists effective treatments for the "type" or "form" of POTS you have. Not sure how old those articles are, however. I will look for them and post. All the best! http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html Lily, that's so great to hear you've got your motivation back. I am tapering off my beta-blocker, propranolol, as I get a lot more benefits from a stronger dosage of Clonidine. It controls my tremor, night sweats, and flushing. It also helps the flight or fright reaction, which would make sense! I am too a bit more relaxed, and now a bonus side effect of a little blood volume! Take care, Lily!

Not to go too off of topic, but I have a camel story. I think I was 8 and so excited to ride a camel at the fair. Well, the next thing I knew, this camel had latched onto my hair for dear life! Thank goodness he didn't take me back to his pack I agree Kris, careful on Camels! ahaha Katie no doubt you provided some great &useful general tips about riding. And, Katie - is it you and Ancy that are the goat lovers? I went on a field trip when I was 12 and a goat stepped on my foot and broke my toe. I had a huge bucket of food which I just should've dropped and he could've cared less about me then I'm sure. LOL. If you know me well, It's best I stay indoors! Hi, Ancy - are there any braces you can find or have made that will help with the dislocation? I know that doesn't fix the j tube concern, but hopefully with after the replacement you can try to get "back on the horse" I bet you can't wait to see your grandparents and vice-versa so they''ll see all the progress you've made! Just reading your updates you provide to us here is such a source of inspiration and motivation. You've come a long way, friend. Draven - I'm sorry that you have challenges now that prevent you from riding. I know in another post you had mentioned an a huge wait for appointment with a POTS dr. in Canada. I'm not sure if you are able to travel, or even do a Skype Call, but Dr. Svetlana Blietsheyn is located in Buffalo NY (about 20 min from the border). http://dinet.org/index.php/about-us/advise Kris - So happy for you that you are able to both ride and exercise! It was a difficult time for you when you thought you would have to give that portion of your life up. I am thrilled for you that you are still riding and able to recover so well. You definitely provide a lot of encouragement around to all of here

Welcome, Aboard everyone! We're here to help

To answer your topic question, I'm not sure if all Hyper pots patients take clonidine. Medical Management and Rx's varies from person to person. There is a lot of literature on this site about "One size doesn't fit all" in relation to medication, etc. But, for myself, Clonidine has been a life saver for me. It has controlled my flushing, tremors, lowered my BP, made a small dent in my HR, helps me sleep again. I mentioned in another post that clonidine is similar to methyldopa, which are both in the same class, used for hyper patients typically. Hi Lily! I found this article interesting about Clonidine and BV. http://www.healthrising.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/clonidine-kataprex-nexiclone-duriclone/ I'd like more information, especially since one of my dr.s conferred with that entry! He did say from what he was aware, it was smaller levels contributing to expand in BV.. Have you ever heard of that?

This is from taken from www.dinet.org, under "What Helps...." Please Remember one size doesn't fit all, and if you have Hypetension or another contradiction you should peak to you directly. Florinef (Fludrocortisone) increases plasma volume. It helps the body to retain salt and water. It also sensitizes blood vessels so that they can constrict more easily (Haran, 2004). Some doctors administer salt tablets with florinef. This is because the effectiveness of Florinef depends upon salt intake. Florinef can deplete potassium and magnesium and supplements may be required. Florinef increases intracranial pressure and should not be used in patients with hind brain compression. Numerous symptoms of sympathetic overactivity are enhanced by Florinef and some people develop severe headaches as a result of treatment (Schondorf & Freeman, 1999). Florinef is a mineralocorticoid and, like beta blockers, can reduce levels of plasma renin activity (Jacob et al., 1997). Reduced levels of plasma renin activity correlate with the hypovolemia observed in some POTS patients. Florinef may be a counterproductive treatment in these patients. Usually, POTS patients are prescribed 0.1-0.2 mg of fludrocortisone daily. The dose should never exceed 0.4 mg orally each day as adrenal suppression may occur (Grubb, Kanjwal & Kosinski, 2006). Ivabradine, a sinus node blocker, has reportedly helped some POTS patients experience less symptoms. Ivabradine is sometimes used as an alternative to beta-blockers because it results in heart rate reduction without vasodilation, sexual disturbances, ornegative inotropic effects. Labetalol is sometimes used in POTS patients because it induces both alpha- and beta-blockade. Dosages of 100-400 mg orally twice a day may be employed (Grubb, Kanjwal & Kosinski, 2006). Carvedilol works in a similar fashion to labetalol and is also sometimes employed as a treatment for POTS. Methyldopa is helpful in select POTS patients (Grubb, Kanjwal & Kosinski, 2006). Mestinon (Pyridostigmine Bromide) has traditionally been used to treat myasthenia gravis, but is now sometimes being used to treat POTS patients (Grubb, 2002). Mestinon works by inhibiting the breakdown of acetylcholine. Acetylcholine is the main chemical messenger of the parasympathetic nervous system. Some POTS patients may have immune systems that are mistakenly making antibodies that are plugging up acetylcholine receptors (Grubb, 2002). Mestinon works to unplug these receptors by allowing more acetylcholine to remain at the neuromuscular junction. Mestinon is particulary useful in patients who have the postviral, paraneoplastic or autoimmune forms of POTS. Mestinon is usually started at 30 mg orally twice a day, titrating to 60 mg orally twice daily, if necessary (Grubb, Kanjwal & Kosinski, 2006). Motrin (Ibuprofen) or Indocin (Indomethacin) might be beneficial treatments for patients with postprandial hypotension (Hilz, Marthol & Neundorfer, 2002). Postprandial hypotension refers to low blood pressure occurring after meals. Motrin and indocin block the blood pressure lowering effects of prostaglandins (Hain, 2001). Studies have suggested that nonsteroidal anti-inflammatory drugs may also lower one's risk of developing Alzheimer's disease(in t' Veld, Ruitenberg, Hofman, Launer, van Duijn, Stijnen, Breteler & Stricker, 2001). However, long term use of nonsteroidal anti-inflammatory drugs can have serious side effects. Phenobarbital is a central nervous system depressant. It can be useful in the hyperadrenergic form of dysautonomia. However, phenobarbital is a barbiturate and people can become addicted to this drug. Barbiturates can also cause fainting (Grubb & McMann, 2001, p. 109). Prednisone, plasma exchange or intravenous gamma globulin may be used in patients who are in the acute post-viral phase of the illness (Low, Schondorf, Novak, Sandroni, Opfer-Gehrking & Novak, 1997, p. 694). These treatments are most likely to be effective in patients displaying evidence of an acute autonomic neuropathy. Saline has shown to be very beneficial in decreasing POTS symptoms. It is an inexpensive treatment with few side effects. However, saline must be given through an IV, which is time consuming and may require trips to the doctor's office. Some of the most severely affected patients report having a peripherally inserted central catheter (PICC line) inserted so that IVs can be administered at home. However, some physicians do not believe the benefits outweigh the possible risks associated with a PICC line. Selective Serotonin Reuptake Inhibitors (SSRI's) are sometimes used to treat those with autonomic disorders. SSRI's are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure (Haran, 2004). Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation (Grubb & Karas, 1998). SSRI treatment can suppress the sympathetic nervous system (Shores, Pascualy, Lewis, Flatness & Veith, 2001). Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI's may be effective in treating the chest pain that is associated with dysautonomia (Low, 2000). However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution. Sleep medications are used by some POTS patients. A number of patients have significant sleep disturbances (Low, 2000). Some patients report successfully using natural alternatives to sleep medication. Herbal remedies should be used with caution and under a physician's supervision, as there are known risks with some OTC sleep aids. For example, the FDA has issued warnings regarding Kava Kava and melatonin supplements have been shown to worsen orthostatic intolerance. Stopping menstruation through the use of birth control pills has reportedly helped some patients feel better. Many women report a worsening of symptoms around menstruation. Stopping menstruation is somewhat controversial, and not all physicians advocate it. Vasoconstrictors such as ergotamine, midodrine, octreotide, ephedrine, pseudoephedrine, yohimbine, theophylline and ritalin improve venous tone which decreases pooling blood. Midodrine is particularly useful in patients with peripheral denervation (Low, 2000). Midodrine is usually started at 5 mg orally three times a day and can be titrated up to 15-20 mg orally four times a day, if necessary (Grubb, Kanjwal & Kosinski, 2006). Midodrine can be used on an as needed basis. Theoretically, continuous use of midodrine could result in constriction of blood volume due to chronic sympathetic activation (Jacob & Biaggioni, 1999). Octreotide is especially useful in preventing vasodilation in the gut, thereby reducing splanchnic pooling. Its actions help to prevent postprandial hypotension (low blood pressure after meals). Octreotide inhibits the release of a variety of gastrointestinal peptides and also may reduce postural and exercise induced hypotension (Mathias, 2003). Octreotide does not often appear to enhance supine nocturnal hypertension, however one study reports that it is a possible side effect (Hoeldtke, Bryner, Hoeldtke & Hobbs, 2007). Octreotide is administered by subcutaneous injection starting at 50 µg 2-3 times a day, and dosages may be titrated up to 100-200 µg three times a day (Grubb, Kanjwal & Kosinski, 2006). A long-acting injectable form has also been developed. Ephedrine is not often used due to its short half-life and undesirable B-adrenergic actions (Jacob & Biaggioni, 1999). Ephedrine can cause tachycardia. Theophyllineis primarily used in asthma patients. One of its effects is to increase vasoconstriction, therefore theophylline is sometimes used to treat dysautonomia (Grubb & McMann, 2001, p. 116). Ritalin increases peripheral vascular resistance via alpha receptor stimulation (Grubb, Kosinski, Mouhaffel & Pothoulakis, 1996). Ritalin is prescribed by some physicians, but can be addictive. Wellbutrin (Bupropion) is a central nervous system stimulant. It is a dopamine agonist and also a weak blocker of the neuronal uptake of serotonin and norepinephrine. Wellbutrin is not habit forming and works immediately. Wellbutrin can sometimes be used to combat the fatigue that plagues POTS patients.

Lewis - sorry for the late reply. Have you ever tried clonidine? It counteracts Norepinephrine levels. Another Rx used for hyper pots in the same class is Methyldopa. http://circ.ahajournals.org/content/117/21/2814#sec-4 Few paragraphs down under "Eval & Mgmt" http://www.cvpharmacology.com/vasodilator/Central-acting

will write more in a bit. I've had episodes of svt and those were helped with another class of bp med's called calcium channel blockers, like verapamil for instance.

I agree, have you had any testing to determine the arrhythmia? If not, something you may want to bring up with your doctor is setting you up w/ a 24-48hr holter monitor. The 2 exercise induced arrhythmias I'm aware of are Non-Sustained Ventricular and Long QT.

Oh, no! Sorry about that, thanks for letting me know! Here is the article. Teens With POTS: How Long Does It Last? William T. Basco, Jr, MD, MS | Disclosures | Author: William T. Basco, Jr, MD, MS, Professor, Department of Pediatrics, Medical University of South Carolina (MUSC); Director, Division of General Pediatrics, Department of Pediatrics, MUSC Children's Hospital, Charleston, South Carolina August 31, 2016 Postural Orthostatic Tachycardia Syndrome Postural orthostatic tachycardia syndrome (POTS) occurs in approximately 1% of adolescents. Teens often develop the condition after infectious illnesses (eg, mononucleosis) or athletic injuries. POTS is characterized by chronic symptoms, including neurologic symptoms (eg, nausea, vision change, or dizziness), and an increase in heart rate of at least 40 beats/min when standing, without an alternative diagnosis for these symptoms. Overhydration, increasing salt intake, medications, exercise, and biofeedback can ameliorate symptoms.[1] The natural history of POTS in adults shows that the symptoms improve over time, but few data exist on adolescents.[2] POTS in Teens A recent study[3] assessed outcomes in a cohort of adolescents (aged 13-18 years; mean, 16.5 years) who were diagnosed with POTS at a single clinic from 2003 to 2010. In 2013, the teens were surveyed and asked to report on their symptom trajectory as they aged into young adulthood. The survey was sent to 502 patients, and responses were received from 172 (response rate, 34%). A majority (84%) of the respondents were girls, and the average age at the time of the survey was 21.8 years. The average period between being evaluated for POTS and completing the survey was 5.4 years. Of interest, 81% of respondents had attained some college or technical training compared with 41% of the US population in the same age range. Among respondents older than 23 years, 49% were college graduates—a proportion greater than that among the general US population. At the time of POTS diagnosis, 72% of the respondents reported being prescribed a beta-blocker, and 27% of respondents were still taking these drugs. The second most common drug used to treat POTS was a selective serotonin reuptake inhibitor, prescribed for 28% of patients. When asked which treatment they believed had helped most, 48% of respondents chose excessive hydration, 45% chose physical conditioning, and 41% chose a high-salt diet. Fewer than 30% of the respondents reported that a drug was the most helpful treatment. At the time of the survey, 71% of respondents reported being in excellent, very good, or good health, and 86% responded that their symptoms were either resolved, improved, or just intermittent. Symptoms had completely resolved in 19% of respondents, and 51.2% reported that their symptoms persisted but were milder. Whereas 15.7% of respondents reported a relapsing/remitting course of POTS, only 8.7% reported that their symptoms persisted with unchanged severity. Unfortunately, 3.5% reported persistent and more severe symptoms. Young men were more likely than young women to report complete remission (36% vs 16%). Mean self-reported physical functioning and health assessment were lower than population means. In fact, physical health scores had the greatest correlation with overall health scores. The lowest health self-assessment scores were seen among those who reported pain, nausea, and exercise intolerance in conjunction with POTS symptoms. Among all respondents, despite improvement overall, 73% reported that they still experienced some degree of physical limitation during vigorous activity, 38% reported some effect on work or other activities, and 50% said that they accomplished less than they would like to accomplish. These findings demonstrate that a large majority of adolescents with POTS improve over time and that persistence of physical symptoms correlates heavily with perceived health. Viewpoint In the introduction to their study,[3] Bhatia and colleagues review published data demonstrating that a multifaceted approach is often the best way to improve symptoms in patients with POTS. My anecdotal experience correlates with their finding that many patients present after an illness or injury, and prolonged inactivity often exacerbates both the real symptoms and the patient's psychological responses to them. The take-home message from this study is to remember to offer these families hope, as confirmed by follow-up data on POTS in teens. The biggest concern for these patients is that they will never feel any better, given that they are often experiencing prolonged symptoms by the time they come to medical attention. I plan to use these findings to reinforce with families the need to take a multipronged approach. Searching for additional diagnoses is not always helpful, and rarely does one silver bullet relieve all symptoms. References Kizilbash SJ, Ahrens SP, Bruce BK, et al. Adolescent fatigue, POTS, and recovery: a guide for clinicians. Curr Probl Pediatr Adolesc Health Care. 2014;44:108-133. Abstract Sousa A, Lebreiro A, Freitas J, Maciel MJ. Long-term follow-up of patients with postural tachycardia syndrome. Clin Auton Res. 2012;22:151-153. Abstract Bhatia R, Kizilbash SJ, Ahrens SP, et al. Outcomes of adolescent-onset postural orthostatic tachycardia syndrome. J Pediatr. 2016;173:149-153. Abstract

Hi, Samantha. Welcome to the forum. I too have high HR on standing and additionally high BP, known as Orthostatic Hypertension. Like Katie mentioned above, I was diagnosed w/ hyperadrenic component and that is common. Here is a recent article written by Dr. Raj, a great POTS specialist and one of our medical advisors. There is a hyper POTS section. http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html#Sec3 Amyschi - Sorry to read you are having a rough time w/ HR and symptoms. There are days where anything revolving around excitement (positive or negative) will fuel my adrenaline rushes, which leads to a higher HR, even flushing and tremors. I am easily startled and it takes me a while to settle down. Very easily overstimulated would be the best way to describe it. Before I found DINET, I had no idea why this happened to me. Reading that others had gone through the same situation helped me a great deal. With the right medications and non-pharmacological strategies (increased fluid & sodium intake, compression) introduced it has decreased my POTS symptoms significantly. Wishing you all the best! womble, I'm so relieved for you that you've had improvement and that you finally seem to have caught a break. Ivabradine has helped me tremendously. I'm not as fatigued and it controls both the tachycardia and palpitation's, I sleep better, too. These are just some theories. One thought is that with each beat the heart contracts and relaxes and every contraction pushes the blood out of two ventricles. When your heart relaxes they refill with blood. Something Ivabradine improves is Stroke Volume and ejection fraction (ejection = amount of blood pumped out of the heart w/ each beat, Fraction = blood % left within the heart)- which is basically the % of blood that is moved out of the ventricles with each contraction. A normal Ejection Fraction # is btw 50-70 (measured usually w/ an echo). I don't remember what mine was, but in a study I was in, it wasn't low,but definetely lower before taking Ivabradine, then with Ivabradine administration, it raised. Additionally, because you have less symptoms, are you less sedentary? Before I started Ivabradine I couldn't walk up a 1/2 flight of stairs. Since I've started taking it, I've had so much symptomatic improvement that I'm now able to exercise 3-4x a week. This in return increased what's called "oxidative capacity" / "Exercise Capacity" which helped my symptoms. http://www.cell.com/cell-metabolism/abstract/S1550-4131(15)00059-5 There is a large study completed on Ivabradine called SHIFT which studied patients in 37 different countries, which also surveys patients quality of life while in the initial phase of dosing and then again a 1 year later. It shows dramatic improvement in patients Symptom Frequency, Symptom Burdon and Social Limitation Scores.

Hi, Amyschi - PM is an envelope in the corner, or you can hover your mouse over the username you'd like to respond to, and select message at the bottom. re: dental work, here is a thread that may be of interest: http://forums.dinet.org/index.php?/topic/27054-dental-procedures/

Hi everyone! This is yet another interesting article posted on our Facebook page and wanted to share it here also.. Dr. WIlliam T. Basco, Professor, Department of Pediatrics, Medical University of South Carolina (MUSC), Director, Division of General Pediatrics, Department of Pediatrics, MUSC Children's Hospital -Charleston, discusses a study on POTS teens. http://www.medscape.com/viewarticle/868032 Sarah

hi noonoo, I'm sorry that you're going through such a difficult time. I have tremors from the adrenaline surges, they are now controlled very well with clonidine and low dose ativan. Clonidine is also a Bp med, but differs from a beta blocker. It lowers NE levels which in return decreases sympathetic activity. It has helped my tremors and flushing the most. Ativan is a benzodiazepine that is a cns depressant, so it basically slows down the cns. And works by boosting the neurotransmitter, gaba, which in return calms physical tension. These often are not tried at the same time as they can suppress the cns and cause breathing issues. I started with clonidine then added ativan a while later. propranolol has been hugely helpful for my pots, too. Wishing you and your family the best! Sarah

Hi, Amyschi, Welcome to DINET You are doing a great job posting! The way you are responding currently is how we reply in topics. If you would like to contact a member privately, you may use the Private Message feature located in the top left corner. Please feel free to ask us any other questions you may have!

Hi to you both! Emma, I am sorry to hear you had shingles. I've heard from friends how painful those can be and so happy that you've recovered from them. I did notice improvements after IV antibiotics after a uti went to my kidney, It helped tremendously with brain fog for a few days later. Here is another thread you might want to check out http://forums.dinet.org/index.php?/topic/27522-im-me-again-clear-thinking-long-story/#comment-256270 Ancy, when I was severely anemic (ferritin was 7), I didn't absorb the iron pills, either. I was given iron infusions throughout a 9 month period and you wouldn't believe how much it helped w/ the fatigue and overall weakness feeling. The anemia also definitely contributed to my exercise intolerability and correcting that helped greatly in that area. I've been done with the infusions for at least 6+ months and haven't had any issues with anemia since. Hoping you get great benefits as well!

Wow, so glad you've all found your way here! Welcome

Hi Sam - thanks for updating us. I'm really happy to hear that you've had success with the Adderall. That's fantastic that your brain fog has decreased to that extent. I had to build up my exercise tolerance also once I was able to get my hr under control. I still don't push myself to keep going for a certain period of time. I find that some days I can only do 10-15 min while others I can do up to 45 on my bike. I always feel worse and prone to crash when I push myself too far w/ set times. Hope you have continued success!

hi Faye, my Dr. said the pots patients he sees often have increased cardiac awareness. I have pvc's & pac's, and am often reminded they are there. He said the general population probably wouldn't feel those. Mine occur with a normal hr, bp , and right before my period usually. possibly you experiencing palpations like goodr mentioned, which can result from a # of things, like abonormal rhythms and adrenaline surges, and can be benign. However, if its new and concerning, especially in the cardiac area, I'd suggest calling your doctor. An ekg or ambulatory holter might shed some light for you.

green - We're all glad to hear your OI symptoms have improved greatly! When long time members com back to report how they are doing, even despite their challenges, it gives the new members hope to see how far you've come and how much progress you've made. Keep up the great work. Just a thought, do you wear compression gear when you exercise - adbodem, thigh high support stocking's, might be working talking to your dr. about. Good luck!

Mary, Our physician list is terrific. Katie does a great job maintaining it and is always adding new doctors, so if you don't currently see someone in your area right now, you can check back. I have IST, too and the only med that has controlled my HR is Ivabradine (Corlanor). I dropped about an average of 60 points with it. It works on the if channel in the heart, but doesn't have an affect on blood pressure. Best of luck on your upcoming test results. I also have a very mild case of MVP, and can relate to your story of being passed around. It's frustrating, but there are very good doctors out there. Take care, Sarah

Hi, Clonidine has been the most helpful medicine for my hyper component, but I have high catecholamine levels. Maybe the combination of Clonidine and Verapamil was causing low BP, and the blurred vision was a symptom of that? Also, propranolol (pure beta blocker) has been very effective at targeting the adrenaline spikes overall, as well as my other symptoms, high BP, tachycardia, tremor, and flushing. Labetalol (alpha-beta blocker) didn't work for me, and actually made my symptoms worse, but it is very effective for a lot of hyper pots. I haven't tried this medicine, but if you aren't able to tolerate the Clonidine, Dr. Grubb recommends Methyldopa for hyper cases. This is Dr. Raj's newest article from 2015 and includes how hyper pots is diagnosed. http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html Also, a tilt isn't always used to measure catecholamine levels only. You can have these measured at a lab, the accuracy depends on the test being completed correctly, but typically they have you lay flat for 30-60 minutes in a quiet room, then they draw the blood. Just an fyi, some of the medicines listed above may alter/scew the results I was told, but you'd have to talk to your doctor about that, and it doesn't sound like you were taking them during your tilt? Sarah