delphicdragon

I thought this was actually a good step in the right direction. I'm attempting to put the full article here (as it's short) Prevalence of Postural Orthostatic Tachycardia Syndrome in Patients with Psychiatric Disorders Battuvshin Lkhagvasuren a , Takakazu Oka a , Keisuke Kawai a , Masato Takii a , Yoshio Kanemitsu a , Shoji Tokunaga b , Chiharu Kubo a Departments of a Psychosomatic Medicine and b Medical Informatics, Kyushu University Hospital, Fukuoka ,Japan Postural tachycardia syndrome (POTS) is a form of orthostatic intolerance. POTS is characterized by a heart rate (HR)increase of 1 30 beats/min or a maximum HR 1 120 beats/min on standing without orthostatic hypotension (OH) and is associated with orthostatic symptoms that are relieved by recumbence[1] . Patients with POTS often complain of light-headedness or dizziness, palpitations, blurred vision, tremulousness, sense of weakness, shortness of breath, fatigue and sleep disturbance [2] . In addition to reporting numerous physical symptoms, POTS patients are more anxious and depressed compared to healthy subjects [3–5] . Conversely, patients with anxiety, depressive and somatoform disorders frequently complain of somatic symptoms resembling POTS [6–10] . However, there are no reports assessing the prevalence of POTS in patients with these disorders. Therefore, in the present study, we assessed the prevalence of POTS and other subtypes of orthostatic intolerance, time course of HR response to orthostatic stress, correlation between severity of depression or anxiety and maximal HR changes after standing (HRmax), and prevalence of POTS-related somatic symptoms in psychiatric disorder patients and healthy subjects. We studied consecutive 198 patients who were first-time referrals to our department between October 2008 and May 2009 prospectively. The following patients were excluded from the analysis: patients who were diagnosed as having disorders other than depressive, anxiety and somatoform disorders; patients who had taken or were taking medications that affected autonomic functions such as antidepressants; patients with physical diseases, including hypertension, hyperthyroidism, diabetes mellitus and obesity. The final assessment included 101 patients and 30 healthy subjects. All patients had a complete general medical evaluation and diagnoses according to the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) using semistructured clinical interviews for axis I disorders. The participants completed the Center for Epidemiological Studies Depression Scale (CES-D) [11] , Spielberger’s State-Trait Anxiety Inventory (STAI) [12] , self-report questionnaires to assess depression and anxiety, and underwent orthostatic testing (astanding test) in a quiet room at 24 ° C. After enough resting time (at least 10 min), the subjects were asked to lie in the supine position for 10 min. Then, they had to initiate and maintain an active standing position for another 10 min if tolerated. Blood pressure (BP) and HR were recorded every minute by an electric sphygmomanometer (Nico PS501, Parama-tech, Japan). Thereafter, the participants filled out a checklist assessing somatic symptoms that occurred during orthostatic testing ( table 1 ). Baseline BP and HR were taken as average values of the last 5 min in the supine position. Change in HR (HR) was expressed as the difference in HR after standing from baseline HR. Based on the results of orthostatic testing, they were diagnosed into 3 orthostatic intolerance subtypes: POTS, OH and neutrally-mediated syncope(NMS). OH was defined by a fall in BP of at least 20 mm Hg in systolic BP or 10 mm Hg in diastolic BP within 3 min in the upright position [13] . NMS was diagnosed as a sudden onset of fainting/ near-fainting during standing [14] . Differences among the groups were assessed using a Pearson 2 test for categorical variables or by Fisher’s exact probability test if appropriate, and 1-way analysis of variance for continuous variables. A random effects model was used to test the differences in HR among the groups after standing across every minute. This study was approved by the Kyushu University Institutional Review Board and all participants provided oral informed consent. POTS was found in 17% of the depressive disorder patients, 3% of the anxiety disorder patients, 6% of the somatoform disorder patients and 10% of the healthy subjects. The prevalence of POTS in patients with psychiatric disorders was not different from that observed in control subjects. HR was increased after standing in all groups. For example, in the control group, HR varied between 11.9 and 15.7 beats per minute during the observation period. Baseline HR and HR were not different among the groups across time (data not shown). No correlation was found between HRmax and CES-D, STAI-1 and STAI-2 scores in patients with depressive disorders and anxiety disorders (data not shown). However, complaints of POTS-related somatic symptoms such as fatigue and light-headedness were more frequent in psychiatric disorder patients versus healthy subjects. This study describes for the first time the prevalence of POTS, OH and NMS in patients with psychiatric disorders. Among 3 subtypes of orthostatic intolerance, the most common subtype observed in psychiatric disorder patients was POTS, followed by OH. NMS was not detected in any group. We had hypothesized that the prevalence of POTS and orthostatic HR response were higher in patients with psychiatric disorders versus healthy subjects because previous studies had indicated that POTS patients often experience anxiety and depression [3, 15] . However, this study suggests that this is not the case. It showed that orthostatic changes in HR are not correlated with severity of depression and anxiety, in agreement with a previous study on orthostatic stress in POTS patients and anxiety [5] . The most interesting finding here was that psychiatric disorder patients complained more of fatigue (36%) and light-headedness (25%) than control subjects (3% each symptom). Therefore, although severity of orthostatic dizziness and fatigue were reported to be good indices for the diagnosis of POTS [16] , such somatic symptoms may not necessarily predict the existence of POTS in psychiatric disorder patients. In conclusion, this study suggests that patients with depressive, anxiety and somatoform disorders do not have an increased risk of POTS, but patients with depressive disorders may more frequently complain of POTS-related somatic symptoms compared to healthy subjects. Therefore, when patients complain of somatic symptoms like light-headedness or fatigue during standing (without showing POTS), physicians should consider that such individuals may suffer from psychiatric illnesses, especially depression.

Does he have POTS due to a virus or is it complicated by something like Ehlers-Danlos. I ask because I have POTS due to Ehlers-Danlos. I don't like roller coasters in general but in college was "politely nudged" onto some of the bigger ones. I have no issues with the smaller roller coasters or the ones that don't go upside down. If I'm inverted, I black out (not 100% sure, as I kept my eyes closed the whole time, but there was definitely a feeling of unconsciousness); which may be what happened to your son. On the other hand, my joints are so loose that the g-forces from the larger rides (Superman, 6 flags, springfield MA) actually caused my neck to dislocate. That was fun! Made for a very interesting day. I've had no problems with Splash mountain in Disney or most log-flume type rides, but the vertical drop in Superman was too much for my joints. That said, he needs to be a teenager and have fun!! If he's stable and isn't passing out at home, I'd say give it a try. Adding Midodrine to my life has allowed me to actually have one! He should learn quickly what his limits are. Sara

They were running at about $300 a pair two years ago. I was told to buy at minimum 2 pair. (One to wear and one in the wash) My insurance doesn't cover them either, so I couldn't afford them. :-( I've found that buying the shapewear type hose works for me if I know I'll need to be on my feet, as do knee high "diabetic" socks. Sara

Hmmm... I tend to get goosebumps in the shower -- specifically if the water is HOT! (Granted I get them when the water is cold too). I never understood why I had the opposite response of normal. Maybe it's because of strange vasoconstriction as a way to counteract the normal vasodilation caused by the heat. Makes it next to impossible to shave my legs though. lol Sara

Chrissy- So sorry you're going through this. My jerking/ tremors/ seizures is actually what ultimately lead to my diagnosis -- surprisingly the ER in MA had a competent neurologist resident on staff who did orthostatics and that's how I wound up diagnosed with POTS. I'm so sorry you got the diagnosis of panic attacks. That's not what these are! Though, I have found they are related to stress (too much stimulation, not enough of the right types of food, etc) I know that these episodes occur when my blood pressure bottoms out. The EMTs who saw me couldn't get a bp reading and assumed their cuff was broken. It wasn't! Things that have helped ease these tremors are getting enough sleep, less stress, eating regularly (all the typical stuff that helps). Pure salt or pure sugar can bring me out of these attacks. I thought I was hypoglycemic initially but according to the doctors my blood glucose isn't low enough to cause symptoms. :-? Still, sugar helps, so I put a teaspoon of sugar under my tongue and wait. That sometimes can thwart the attacks. Elevating my feet above my head also stops them within a minute or so. Though it's not always easy to get my feet up when I'm twitching like that. Good luck in finding a doctor who gets it. Most ER doctors are great for trauma but have no idea what to do with chronic cases. I tend to only go to the ER if I think they can "fix" it. Orthopedic issues, serious illness, things like that. I've only gone to the ER with POTS once -- pulse of 160 laying down. I would have been diagnosed with panic attacks too, if my cardiologist hadn't intervened, explained what POTS was and insisted they do blood work. Apparently potassium levels in the toilet will cause tachycardia too. Sigh. Feel better! I've found these tremors do get better. Used to happen 2-3 times a week. Now it's maybe once a month, if that, and doesn't last nearly as long. Sara

((((((((((((((((hugs)))))))))))))))))) I'm concerned about you and I wish you the best of luck on this journey. We're all here to support you. And 2 ensures is great! It's a definite step in the right direction. The nurse therapist worries me. Perhaps it's time to look for someone else to help you. I don't think anyone should be telling you that your husband is gay, except, perhaps, your husband. I've had a lot of issues with foods too - never because of a desire to be thin (though I am) but because of anxiety that made eating impossible. I'm 140 pounds and 5'8" now, so things have evened off, but there were months when I was younger when I could barely eat anything. Is there a time of day when you're hungry? I tended to be hungry at night and better able to eat as the day went on. I think something to help with anxiety might help you. Medication? Maybe? I find Rescue Remedy works well - just a few drops under the tongue. You can find it at a natural food store. Also, try eating while reading a good book or while watching TV. Sometimes food just disappears that way and you don't even realize you've eaten it. I would say keep up the good work with the two ensures. Solids help keep your strength up. Maybe try puddings or other soft foods that tend to liquefy when you eat them. Sara

I've met Karen and her family. Sweetest people EVER! :-D

Try vitamin D. I have POTS and hypermobility (Ehlers-Danlos syndrome) and was having severe joint and bone pain for a while. After starting on Vitamin D I've found that the bone pain is gone. My vitamin D levels were REALLY low and mega supplementation helped (5000IU/ day). I'd check with his doctor first to determine if he should be supplemented, but that's what helped me. It does take a while to work though. Sara

First off (((((((hugs)))))) and good luck with the road ahead. I just was wondering if you tested positive for Ehlers-Danlos Syndrome. (I can't remember a darn thing lately) I have EDS and also have some strange clotting issues. My d-dimer is always high; I clot on birth control pills, but they can't figure out WHY I clot. All genetic tests were negative. The doctors in Connecticut thought it might be due to my EDS; that because of the collagen / extracellular matrix being faulty my body isn't making the right proteins for appropriate clotting. I clot very fast! A friend of mine, also with EDS, has a clotting issue too. She can't take birth control and recently had micro-clots in her kidneys. They aren't sure why this was happening, but were also suggesting EDS as a possible cause. No studies to back this up though. Wishing you all the best! Sara

Dizzy- Glad to know that I could help somewhat! Every once and a while I realize I've learned something useful. LOL. All our bodies convert things differently. Look at people's differing alcohol tolerances. It all has to do with how fast the alcohol is converted into Aldehyde. Some people convert fast- some don't or can't. As for the natural steroids and allergies - I think there is a connection. I haven't done any research on this (and am not at work currently so I can't look it up) but this is my theory. Steroids in excess suppress the immune system. (If you've ever been on pregnisone long term they tell you to be careful of infection) Allergies are often the body reacting in appropriately to something (Have you heard of the hygiene hypothesis? Theory is that too much cleanliness causes our immune systems to over-react to things it shouldn't over-react to - hence allergies). A normally reactive immune system reacts to germs and not to things in nature. An under-active immune system, like one caused by steroid USE, does not react to germs or allergens (which is why they give you steroids to stop an allergy response). An over-active immune system reacts to EVERYTHING. If we don't have the natural steroids to keep the immune system in check, it's going to react to EVERYTHING. It's WAY more complicated then that - but I figured I'll keep things simple for now. Sara

I do better with white rice than brown. I also have some gastroparesis - which makes high fiber things hard to digest. I can't tolerate gluten free bread. No issues with long grain / wild rice. If you are celiac - be warned, gluten is in a lot of things - including some shampoos! Good luck! Sara

I'm no expert on any of this. I'll tell you guys what's helped me. A lot of this is from my allergist- who is AWESOME!! (And he pissed that the ER did almost nothing)My allergic reaction was very similar to what I would expect one from food would cause. I have few food allergies. I usually respond poorly to additives. I can't do artificial sweeteners at all. I also have issues with barley malt (so no beer for me). Most of my reactions have been to medications (and rabbits). This reaction started as itching on my face, arms, and chest and then my asthma kicked in and I couldn't breathe. My allergist was surprisingly willing to mix drugs. H1 blockers block one type of receptor and H2 blockers take care of the other type of histamine receptor. For my allergic reaction I was on Allegra, with Atarax and Benadryl for breakthrough itching (H1 blockers). I was also on Pepcid (H2 blocker) and Solumedrol plus inhaled steroids and Xopenex (Nebulizer). My allergist said that Zyrtec, Claritan, Benadryl, Atarax and Allergra are all H1 blockers but certain ones worked better in certain people. Allegra and Atarax worked well for me without too many side-effects (No cardiac issues, mostly digestive and insomnia). I've taken Claritin before and I was in such a fog I couldn't spell my own name. Benadryl usually makes me a bit high, but I can tolerate it. Pepcid worked better than Zantac (also an H2 blocker) for ME. I think a lot of this is just trying stuff to see what happens. Next time I have a reaction I know that Allegra, Atarax, Pepcid and Xopenex should be enough to stop any reaction. But everyone is different. Also, (and sorry for the long post) Just because a test shows that you're not allergic to something doesn't mean that you aren't. I was tested a while back and was told I had ZERO allergies. I had a same test a year later with a different doctor reading the results and it turns out I was highly allergic to environmental things like cats, and mold, and most plant pollen. My reactions to both tests were identical - the first doctor had totally misread the test! Lieze - potatoes are members of the nightshade family- which includes tomatoes, peppers and eggplant. I'd avoid those foods as well for now. Rice seems to be a non-reactive type of food, as is de-skinned chicken. Sometimes cooking the heck out of a food makes it easier to tolerate. Cooking foods denatures the proteins (this changes their shape) and that makes us less likely to react to them. (Not a medical doctor - just a scientist) Sara

Eep! What a response. I'm so sorry you're going through this Lieze. I just had an anaphylactic type reaction to MRI contrast - and that lasted 3 days and involved two ER trips and double doses of H1 and H2 blockers and steroids to get it under control. I was so sick from the medication. Even with the double doses, it didn't knock me out. Be happy that Benadryl took care of your reaction! I just wanted to add one thing about the dye free Benadryl. My mom (who doesn't have POTS) and I are both ALLERGIC to the dye free version of Benadryl. She purchased that for her spring allergies a couple years back and took it. Broke out in hives all over. I thought, you can't be allergic to the dye-free version of something, and so I took some to "prove her wrong". I was a dumb teenager back then. Sure enough, I got hives too. If you are able to tolerate the pink version, take it. Perhaps take a few drops before you eat so that you can get some calories in your system and stop the allergic response. Maybe you should look into MCAD and stay on an H1 and H2 blocker regimen in order to give your body a chance to recover? Hope you're feeling better soon! Sara

Hey Everybody- I haven't been on here much lately because I'm doing well *knock on wood*. I'm now on 5mg Midodrine 3 X a day, with an additional 2.5 if I need to stay up later at night. It's been working quite well. My panic attacks / POTS crises, which were daily are now down to twice a month. I've been able to stop my IVs (though I'm not sure if I'll be able to stay off them in the summer) Now I've gotten myself stuck. I'm looking for some advice. I had to have an MRI of my pituitary gland on Wednesday. This involved an injection of Gadolinium, which is a magnetic mineral that lets you look at structures in the brain. I have had mild reactions to this before - some chest tightness and nausea with a drop in blood pressure. Therefore, I've asked for a 1/2 dose to be administered slowly. That worked last time. This time, well... not so much. My lips and eyes swelled up while I was still inside the machine and I started itching EVERYWHERE. They gave me 75mg of Benadryl (which should have knocked me out, but didn't) That sorta stopped the itching and I headed home. I took Benadryl at night (another 50mg) and went to sleep. Next morning I noticed that I was still itching EVERYWHERE and my face / chest were bright red. I was also having some trouble breathing. I took Benadryl and went to work. The difficulty breathing stopped, but I was itching so bad my co-workers insisted I go to the ER. (I work at a hospital). The ER doctor was a joke (no surprise). Because I had taken Benadryl, he gave me Pepcid (H2 blocker) and Steroids. That worked for all of 15 mins. Still itching. Finally he relented and gave me Atarax (H1 blocker). Meanwhile my heartrate was bouncing between 90 and 140 laying down. The nurse noted this and turned off the monitor (I think she didn't want to deal with it.) So, still itching, they sent me home. Great. My asthma kicked in Thursday night and I was wheezing. Orthostatic hypotension, which the midodrine had been taking care of came back, even on Midodrine. The Atarax helped, but not enough to stop the wheezing, just make it dealable. I went to sleep, and tossed and turned all night. This morning (Friday) my asthma was really acting up and I couldn't take in a full breath. I called my allergist and got seen in the AM. He gave me nebulized steroids and Xopenex along with a MASSIVE dose of Allegra and Zantac. I stopped itching and my rash finally went away. I can breath now, but otherwise I feel AWFUL. I know my body has been through a lot, but I don't want to eat anything or do much of anything. My brain feels shot / drugeed (which it is, I guess). Had anyone ever heard of a 3 day allergic reaction to Gadolinium contrast??? (Or a 3 day reaction to anything??) I had been doing so well, am I going to go into another POTS crisis after this? I'm scared to lose all that I've gained. Did I somehow start an MCAD like reaction? Thoughts? Sara

For those with issues with a lot of different drugs- have you looked into the inactive ingredients in these drugs? You might be able to handle the drug itself, but the other ingredients might be what are giving you trouble. I say this because I have issues with aspartame. I didn't realize how often this was added to medications. (I can't swallow pills, so I buy over the counter children's chewable pills if I can.) See if there is a component of these medications that might be what is causing your reactions. Sara

I know blood sugar can cause anger issues as can dealing with the fact that you're losing so much of yourself. Though, I hope that your son is thoroughly tested for pheochromcytoma, which can also cause these type of episodes. Good luck. Prayers abound. Sara

Used to get these type of episodes all the time, especially in college. Now they only come when I'm under extreme stress and haven't been taking care of myself. I'm on midodrine now, and they can also come if I push too hard. I can hear but not respond. I don't remember much from them. No doctor has figured out what they are, but when the EMTs took my bp during one of these episodes, it was undetectable. I assume my bp just drops out. When I used to get them all the time, the time around my period was the worst! Turns out my bp normally runs about 80/50 when I'm "due" and therefor there was less of a cushion when my bp would drop. Hope you're feeling better soon! Sara

Thanks everyone for your advice! I started the Midodrine again today. Am just doing a half a pill - so no tingly head but also not a lot of energy increase. I'm going to stay on this dose for a while and then slowly up it (maybe after a week) I think I did too much last time and that had a huge role in my crash. Actually was about an hour late in taking my last pill, I noticed it in my heartrate but didn't feel like my body was shutting down - which was good. Wish me luck and continued success. Sara

For those of you on Midodrine, I've got a couple questions. I started it yesterday, hoping it would help with the fatigue I experience. 2.5 mg every 4 hours. Took the first dose without a problem around 9am. No side effects other than an increase in energy. Took the second dose around 1pm. Noticed a feeling like my head was asleep. Which was strange, but nothing out I couldn't live with. But, I had way more energy and was able to function normally - which was great. Took the third around 5:30 - again felt the tingling in my head. This lasted about 2 hours. I was really liking the Midodrine because I was standing from about 9:30am to 2:00pm with very little fatigue. My BP was stable at 120/80 standing, when it usually drops out. The medicine started wearing off around 9:30/ 10:00 and I crashed hardcore. I felt like I was about to have a seizure, even though I was laying down. I couldn't think. I got a severe headache; which I still had this morning. Now I'm scared to take the medication again. Does midodrine usually take this much getting used to? Should I give it another shot? Am I not metabolizing it correctly? I'm really confused and really scared. Also, my bottle says take with a full glass of water. I know I didn't do this - so maybe a lot of this was from dehydration. Thoughts? Help! Sara

I too was diagnosed as D deficient. Took anywhere from 2000-10000IU per day orally and didn't really feel a difference other than my legs, specifically my shins, no longer hurt. However, the doctors did more blood work after looking at some strange bruises and found out that I was also B12 deficient. I started with 1000mcg of B12 and 800mg Folic acid and within a week noticed an improvement. I now take 5000mcg B12 and 1600mg Folic Acid 2-3X a week along with 7000IU D 2-3X a week. This has helped tremendously. For those taking D, make sure it is D3 - as D2 is not absorbed properly (or so I've been told). Sara

I'd recommend getting your Vitamin D levels checked. My very low levels caused severe leg pain which resolved after taking 5000IU/ day for about a month. Just a thought. Sara

I'm working on a doctorate in Biology and have a degree in BioChemistry. Neither of those things have made the diagnosis of POTS / Dysautonomia any easier. Yes, I understand more of the lingo, but doctors almost always assume that I am making things up because I "know too much" and are often offended because I'm using "their" language. Endocrinologists I have had a lot of luck with, but I will only see doctors who want to treat me and who don't assume that I'm faking it. Surprised you aren't seeing one anyway with the Cushing's diagnosis. Have you had your pituitary MRIed? I have a pituitary microadenoma and those things can really screw with your hormones! There is a surgical cure for Cushings (if you have the form that is caused by a pituitary tumor) and I've been told that can help with POTS too. Just something to look into. Sending you hugs too. Your education isn't the issue, it's the doctors lack of communication in treating you. Unfortunately if you have anything more complicated than a paper cut you need a team of doctors and often they don't speak to each other (OR TO YOU!!) Keep on being your own advocate. Sara

I get these all the time. They were much worse during puberty and have since subsided. I used to get them 2-3 times a week and it's now down to 2-3 times a month, often around my period, but there is no real trigger. Sometimes cold foods can set my stomach off into this "fit" especially if I combine something cold with something greasy. Thought it was my gallbladder for the longest time (and it still might be) but I've yet to get it checked. Dairy in the AM will also set these off, but many times not until hours later. Usually I get really hot and nauseated, then my stomach starts making weird noises and I have to rush to the bathroom. The only thing that really helps is lying down quietly for a while afterward, sipping water. The episodes last between 1 and 3 hours and often I am SO tired after them I nap. I'm still not sure if the need to have a bowel movement causes these (they are worse when that end of things isn't working regularly) or if they cause the need to have a bowel movement. One thing I have noticed is that teensy amounts of alcohol calm it down. (Like a sip or so) Often I can't eat of drink when these happen, but a few drops of something strong on my tongue can relax me enough to make the next few hours bearable. I've been having them for at least 10 years, so if you have been tested for other more serious things, I would assume that it's the POTS. :-/ Sara

I use IV fluids. In the summer I would get them once a week over 4 hours. Now that it's cooler they are every 2 weeks. It helps. But it only helps for about 3-4 days. I have to have them go over a long period of time or else the fluid just goes through me and it does no good for my heart. I also have to make sure that I eat salt while I'm being infused, that helps the fluids last longer. I usually sit there eating pretzels. I think I do need them once a week, especially before my period. Was seriously dehydrated this week. Glupping water doesn't help nearly as much as IV fluids do. Sara

I can't tolerate Albuterol either. Took one puff years ago and it sent my heart rate to 180 laying down!! Almost went to the ER for that, but managed to sit it out for the 2 hours it took for the med to start to wear off. My asthma is mostly controlled without meds, BUT if I have a flare, I take Xopenex as a nebulizer treatment and Maxair as an inhaler. I've found neither screws with my heart rate too much - though both will make it jump a little (from my baseline of 100 to around 125) Sara