I have been diagnosed with pots and I am putting together a reference journal for publication regarding pots etiology, pathology, symptoms, diagnosis and treatments. I am reaching out to anyone who wishes to share their story as part of my research. I look forward to hearing from you. Bb
Maybe you can help me. I was in a car accident and had a head injury and since then have been told that I now have POTS. Two doctors seem to think it is from the head injury. I am trying to find more information on head injury and POTS. Do you have any information that might be able to help me?
I also had a head injury in a car accident and have just been diagnosed with pots. Believe me, you are NOT alone. POTS can develop after of injury or trauma, (among other things)and a car accident is both.
The only connection I have found between POTS and head injury is the damaging of the medulla. The medulla is responsible for your autoimmune system which is failing us both right now. I'm not sure if the damage has to be significant enough to show up on an MRI or not.. my MRI's came back normal--but I still have POTS. so who knows.
Eating more salt has been advised, but make sure to increase your fluid intake as well. This increases blood volume.
My 13 year old son had the swine flu in Sept, and now has been diagnosed with POTS. At first nobody believe him that he was sick and he even spend time at a psychiatric institution, due to suicidal ideation. Due to depression and feeling that nobosy believed in him. He has severe headaches, does have terrible stomach pains and gastroparesis, and they did blood work for niacin (B-3) and found none in his body. This test was done x2 and came back w same result. Now, the doctors are telling me that the blood test for niacin is not reliable and only through a 24 hour urine collection essay can it be daignose. However, NOBODY does this urine test. Only done at present in clinical trials. I believe that the lack of niacin has to do something with the POTS and his migraines. The swine flu precipetated all of his symptoms. Anyone, knows a lab that can check the niacin levels in urine?..any pediatric specialist in POTS?..
desparatemom1 ~ I am so sorry to hear you and your son have gone through this. My daughter was 14 when she found out she had POTS, and I remember so many people told her she just needed to 'toughen up' and some people told her she was lazy. By the grace of God not longer we found out by a wonderful cardiologist that she has POTS. ~ The problem is finding doctors who do know about POTS. Our family physician had heard of it, but his co-workers had not. Go to dinet.org and you can find a lot of info on there. I wish you and your son the best! ~ Also if you are on facebook there is a 'POTS' site and it has been wonderful for information. There have been a lot of people that have helped me find answers to different questions I had about it. God Bless you guys!
I've been taken to the hospital twice this month because of very rapid and irregular heart beat. I am a 31 y.o. female, 120lbs, healthy, don't smoke, eat well...etc. Out of nowhere it seems, I have developed POTS. I am going to a cardiologist for more tests tomorrow but I am usually around 100bmp when resting, and I jump up to around 140bmp with simple activities like climbing a set of stairs. This all began last year with a bout with the swine flu, and since I've have 8 strep throat infections.
Can the illnesses be related to this newly developed heart/neuro condition?? Please advise. Thank you!!
Was very healthy util I had back surgery. Thats when I believe i developed my problem. I went for a physical and they checked my pulse and said it was 165 and said I needed to see a cardiologist right a way. so She refered me to one. I went for an ablation and there was nothing to ablate in uc davis and the did a total work up and but it was too expensive for me to keeep going down there so i needed to find an electophysilolgist closer to me so I found one in Chico. six months later after I started having symtoms again , puse in the 170s, The electrophysilogist in Davis never gave me a dx so I but I knew it was postural. Everytime I would go to the er they would lay me down and put the leads on and say your rythem is 80 why are you here and I would insist on standing up to show them how fast i would go up to 170 plus before they thought I was crackers. So, finally I go to to this guy in chico because of new symptoms High pulse for a month , stomach problems, weight loss, 30lbs in a couple months and neausea, ohhhhhh the neausea. I am surprised im still working. My Bp is low its but he told me to break the toperol in half and hopefully it doesnt tank me. Im just scared because ive never had anything wrong with me . Im 37, my questions is.. is this a progressive disease? Can it turn into somthing else?
Med Student with POTS for 7 years... Finally right MEDS!!
Long story short, I have had POTS for 7 years, thought I was misdiagnosed with narcolepsy for the first 4-5. It had previously been a real struggle for me, as I knew I did not have narcolepsy, but the medications they gave me really helped. I started on Provigil but bc it deactivated my BC, I moved on to Ritalin. When I started medical school, I had NO IDEA how hard it would be dealing with this. Before, in college, school wasn't really something i "had to" go to, and my absences really didn't affect my grades so I thought that my medication was working just fine. THEN, I had to try and figure out how I was going to take the time to let my medication to work in the morning and still make it to 8am class on time after studying until 1am every night. Ok so here is the summary of why I found 100% controls my "spells" from POTS...
- Two hours before I wake up every morning, I take 20mg IR or XR ritalin/Adderall
- So when I wake up, am I not only "wide awake" but I have energy, and my vascular tone is high enough that I am even able to immediately take a hot shower in the morning (I really missed those)
-- THIS DOES NOT WORK IF, I decide to indulge in one too many beverages the evening prior Alcohol is a HUGE factor for me, so hydration is also VERY important. If I come home, drink a two bottles of water and take multivitamin, I'm usually ok... but I know that drinking kills my whole next day.
-- Another problem is, sleeping through my alarm I'm way better about it now, but if you forget to take that dose in the morning... you are stuck in bed just like a normal day
--My second dose of the day is DAYTRANA PATCH, 15mg (I cut a 30mg in half), usually around 1pm or about an hr before the first dose wears off. To give you an idea of how much I LOVE this treatment option, I pay $200 every month for these bc my insurance won't cover it (some will mine just sucks) and it gives me a rash on my skin when I wear it but the positives still FAR out-weigh the negatives!!! Why? Ok, so Daytrana is pretty much a transdermal patch of ritalin... so what's the big deal? It lasts for 12 hours at least... AND if I decide I want to go to sleep... I just take it off two hours before I go to bed and I'm sleeping like a baby!
-Negatives- just as you have to rip it off two hours before you go to bed, you equally have to put it on two hours before you want it to start working. And if you forget to take it off... sleep will not be easy
+ Daytrana is also an appetite suppressant, WAY better than any of the other stimulant/ADD/ADHD drugs out there. So go ahead a disagree with me if you want, but if you have POTS, having energy to workout is next to impossible... and I gained about 40lbs the first year I had POTS. BC I was too tired to get out of bed, just sat around and ate food all day. Daytrana also not only makes you not think about food, but if you are hungry, you crave salty foods... which, we are suppose to increase our salt intake... so yet, another benefit! After I started with daytrana, I literally, was a functioning better than a normal person - as long as I didn't go out drinking that is .
**This may be a little much for some people with POTS, as my schedule is way more demanding than most peoples... and honestly, when I was just working over the summer... a 15mg patch of Daytrana was enough for the whole day... sure it was a pain in the butt to set and alarm 2 hrs before I woke up and put a patch on... but again... way worth it.
ONE LAST THING-
**DAYS I HAVE SPELLS...
- For me, it is impossible for me to have a spell and return to normal. I have to go to sleep and let my body recalibrate or I will continue to have spells all day long. So in that event, I will sometimes take melatonin (5mg) to help me go to sleep. I DO NOT RECOMMEND THIS ALL THE TIME... but it is way better than taking medications that depress your nervous system. A lot of people with ADD/ADHD take this regularly but from the pubmed articles I have read, it can cause problems in POTS pts, luckily I am not one of them, but if you are, please don't do this!
I would love to hear if this works for you! I have tried everything for the last 7 years and for someone with a demanding schedule, this has changed my life! Now I just need to get my health insurance to cover daytrana!!!
I do have concerta but i was afraid to take it since i have pots because i was dx with adhd a while back ago. Hmmm maybe ill try taking that a see if that will keep my bp up while Im taking those beta blockers. Maybe it will keep my energy up too. I was kind of thinking of that too. Thanks, I have actually been researching alot about taking meds for ADHD and pots and how it counter reacts. Unfoutunatly doctors around here know NOTHING about pots!!! . Nobody around here has heard of pots syndrome. But I do have a Phyc doc that gives me Concertta. And a physiologsigist that gives me the Betta blocker that tanks the crud out of me, and midodrine that doesnt do anything by the third day . I work 12 hour shifts at a very busy hospital and cant be slurring because my speech bp is tank or passing out because I stopped my meds and my pulse goes to 170 pluse immediatley. I am very new to the pots thing so I am starting the salt thing and the hydrating thing so that is helping. But at first it was a very depressing dx. But now, I am going to kick some pots butt!!
I agree-i am new to POTS had since last year so about 7 months, I am just upping water and fluids and salt intake, exercising when I can, eating small meals-at work I dont eat at all not even brekkie b4 lunch-mornings are my worse and any food does not help-i work fulltime in a busy office 8am till 5.30pm so by the time thats drained me its hometime, be good to add me if anyone wants a chat =)
back in 2007 I was jumped by an ex and his 4 other friends one of the girls stomped on my nose witch led to staph in my nose it went from my nose to my eye to my lungs I had a chest tub in my left lung and a biop. in my right I was in the hospital for a whole mth when I was ready to go home they sent me home on a pick line I was on that for two weeks and when they removed it about an hour later I was soooo tired so I took a shower and layed down when I woke and stood up I was out of breath like I had been running a mile race or some thing I went in to the er and they found notthing wrong with me for four years I had no idea what was wrong untell I seen a heart dr. in feb. on 2011 and he explained to me P.O.T.S. and what its side efects are I finaly had a answer and knew I wasnt ganna die well I hope it dont cause other problems I have been on beta blockers but they slowly stoped working im so fustrated waiting on the dr. to get back to me
Hey guys, facebook has a few pages/forums for POTS...message me if you want to know more =) We have ppl worldwide posting questions and sharing tips etc...would be good to get alot more POTsies over there too =)
The Children's Gastroenterology and Allergy Clinic, P.O. Box 25-265, Christchurch 8144, New Zealand.
Hypothesis: Gluten causes symptoms, in both celiac disease and non-celiac gluten-sensitivity, by its adverse actions on the nervous system. Many celiac patients experience neurological symptoms, frequently associated with malfunction of the autonomic nervous system. These neurological symptoms can present in celiac patients who are well nourished. The crucial point, however, is that gluten-sensitivity can also be associated with neurological symptoms in patients who do not have any mucosal gut damage (that is, without celiac disease). Gluten can cause neurological harm through a combination of cross reacting antibodies, immune complex disease and direct toxicity. These nervous system affects include: dysregulation of the autonomic nervous system, cerebella ataxia, hypotonia, developmental delay, learning disorders, depression, migraine, and headache. If gluten is the putative harmful agent, then there is no requirement to invoke gut damage and nutritional deficiency to explain the myriad of the symptoms experienced by sufferers of celiac disease and gluten-sensitivity. This is called "The Gluten Syndrome".
Hi i'm Jillian, and i have dysautonomia. I was born with it. I'm 16 now, and i go to a autonomic clinic in the childrens hospital. It has caused me to have seizures, stop breathing, low plasma, HR of up to 210bpm, sometimes when i stand my heart and blood pressure drop extremely low which causes me to pass out and stop breathing(depending how low it goes). However, standing isnt the main cause my "episodes" - they happen when i'm laying down, sitting, standing, walking- no matter what i'm doing really. The past 2 weeks i have went into autonomic crisis and have dropped 17 pounds in 14 days so i have to go back to the hospital on the 5th to be admitted for treatment and more testing. I have a chest port that they give me medications through, i also get IV's at home through it too. I take 11 medications daily for my heart, blood pressure, blood volume, kidneys, stomach, seizures and i get breathing treatments 3 times a day because dysautonomia has lowered the ability for my lungs to cough up any mucus, so thats why i get breathing treatments, the breathing treatments help all the mucus and nasty stuff in my lungs to come up. No matter what happens, i won't ever give up my battle to live. Stay strong everyone <3 don't give up