Alcohol
Most experts advise avoidance of alcohol in patients with postural orthostatic tachycardia. Alcohol use prevents blood vessels tightening as usual, stopping the return of the blood to the upper body and the head. This may lead to low blood pressure, dizziness and possibly passing out. Alcohol is also a strong diuretic (Roberts).
Dehydration
Dehydration needs to be avoided, as it will worsen orthostatic intolerance and other symptoms. Fluid intake should be increased in POTS and care taken to ensure adequate fluid replacement.
Dietary Factors
See the section on diet for an in depth look at diet and POTS. In addition to increasing fluid intake, POTS patients should increase salt intake. Smaller meals low in carbs are preferred. Caffeine limitation may be beneficial in some. Energy drinks should be avoided.
Doctors Inexperienced in POTS
A POTS diagnosis can be very frustrating, a large part of which is getting the diagnosis in the first place. Despite being common, POTS syndrome is generally not recognized by most Dr’s and symptoms are frequently diagnosed as anxiety. In fact there is a trend towards less anxiety in POTS patients as compared to the general population (Raj et al). It’s vital that POTS patients find a doctor experienced in the treatment of dysautonomias.
Some Medications That Can Worsen POTS
There are so many drugs that can worsen POTS that there’s no point writing out a long list here. It’s critical though, that before starting new medications that POTS patients inquire whether there could possibly be any worsening of orthostatic symptoms. Your Dr will be able to answer these questions if asked whenever a new medication is prescribed.
To find experts in POTS around the United States check out XpertDox.
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Can ADD medications or pre work out drinks such as C4 effect POTS? My son is in college and was rushed to the emergency room because of dizziness upon standing which led to falling. His heart rate increased upon standing up to 60+ upon standing. The hospital has advised us to take him to Cardiologist to evaluate for possible POTS syndrome. He has been working out and is in great physical shape however he does take ADD meds and the C4 workout treatment. Any information you could give me would be greatly appreciated. Sincerely Concerned Mom
Hi Debra,
I also have ADD and have H-POTS. Some days the extra caffeine in the medicine can trigger POTS Syndrome and other days it doesn’t. The extreme fatigue I feel is helped with my ADD medication as well as my ADD symptoms so for me, the sporadic symptoms are worth the benefits I get from the medication. That’s one of the things about this syndrome, unfortunately it is pretty unpredictable. However, it is recommended that POTS patients avoid energy drinks and from what the website says about this C4 drink, it doesn’t sound like something even a healthy person would want to consume too much of. I would definitely advise him to steer clear of the work out supplements until he’s seen a cardiologist familiar with POTS syndrome and finds out which sub-type he might have.
Was your soon lifting heavy weights before he got dizzy? This might be important to tell the cardiologist as it could also have been a vasovagal response to the strain of lifting. I am not a doctor so please take this information as my personal experience and not professional medical advice.
I don’t know if anyone else has experienced this … but Caffeine, energy drinks and other high uppers helps my dizzyness… I take salt tablets and Midodrin… I still get extreme dizzyness but the caffeine helps…. I’m at wits end and dont know what else to do. I’m starting to lack in my ability to work.. Anyone else experience this ?
I had to take a leave of absence…. This is the worst thing I’ve ever endured…. I’m even now afraid to try new needs because the others affected me so terribly..
Meds
Melonie D
Can you email me? I’m having problems getting diagnosed
[email protected]
Hi I just discovered that my anxiety symptoms correlate strongly with POTS. Especially notice if I fast for a few hours my chest pain gets really bad. anyways I am responding to you bc I did a sleep study recently and found out I am narcoleptic. If you suffer from chronic fatigue and POTS, its possible that you could have narcolepsy or sleep apnea. a sleep study could be a good idea to rule it out.
Yes I too am helped with caffeine or coffee. This is because I have spinal fluid leakes (SFL) caused from EDS which probably caused my POTS. My neurologist put me on massive doses of caffeine to seal up the dura in my brain where the leak was. It worked!!!! My headaches, nausea and balance all improved greatly and very quickly. I now just drink about 4 cups of coffee a day but I use a healthy coffee. I know this works and is needed daily because on a very hot day recently I only drank iced water by the following day I had another SFL and ended up in hospital where I still am. Many people who have POTS or EDS or CFS get SFL and need caffeine. Maybe you should be checked for a SFL because some people need blood patches too. Please skip the energy drinks though, because they are too high in carbs which can make your symptoms worse eventhogh the caffeine in them probably helps for a while, it’s not worth the effects of high carbs. So coffee can be good for some people. My Dad was also helped greatly with lots of coffee and lived to 86 with similar problems to me. I spent years trying to get him to stop all his coffee only to find out that he needed it too. He like you kept saying, “but it helps me so much, I can’t cope without it”. Now I’m the one saying this too!!!
Hi Court, Yes I too am helped with caffeine or coffee. This is because I have spinal fluid leakes caused from EDS which probably caused my POTS. My neurologist put me on massive doses of caffeine to seal up the dura in my brain where the leak was. It worked!!!! My headaches, nausea, balance and dizziness all improved greatly very quickly. I now just drink about 4 cups of coffee a day but I use a healthy coffee. I know this works and is needed daily because on a very hot day recently I only drank iced water by the following day I had another SFL and ended up in hospital where I still am. Many people who have POTS or EDS or CFS get SFL and need caffeine. Maybe you should be checked for a SFL because some people need blood patches too. My Dad who lived to 86 also believed coffee helped him, I spent half my life trying to convince him to stop only to find out he needed it to, it really was helping him. Please skip the energy drinks because they are full of carbs. The caffeine in them probably helps for a while then the carbs will make your symptoms worse!
i have several issues–hypothyroid, hyperparathyroid, limited scleroderma (although rheumatologist is ruling out other possibilities). the POTS i diagnosed myself (i’m an RN) and the arrythmia specialist agreed with my diagnosis. he put me on propranolol and signed off on my case because he said i had already implemented all the changes that were needed and had it under control. my PCP put me on ropinirole 0.25 mg at night for severe RLS a few months ago. lately i have been feeling much worse and am trying to sort out what the issue is. i suspect it is the ropinirole. although i am fairly strong because of all the conditioning work i do–i am finding it difficult to do most anything again. the rheumatologist increased my gabapentin in hopes i won’t need the ropinirole (also having severe diarrhea–which she thinks may be from same med.) i stopped it last night and will take it every other night for few days to ween off. the arrythmia guy said never to go on norepinephrine reuptake inhibitors—since ropinirole affects dopamine i thought it might have similar problems. any thoughts?
Ropinirole can cause nausea, dizziness, hallucinations, orthostatic hypotension, and sudden sleep attacks during the daytime. Unusual side effects specific to D3 agonists such as ropinirole and pramipexole can include hypersexuality, punding and compulsive gambling, even in patients without a history of these behaviours.[8]
Gabapentin was almost the death of me. I was first given gabapentin to help with nerve pain suffered from nerves in my abdomen caught in scar tissue following surgery. I became so brain fogged and yet the dose of gabapentin was continually increased for the pain, which it did help somewhat. Then, as the brain fog worsened, I was referred to a neurologist who diagnosed me with dementia of the Alzheimer’s Type. I lost my job and my drivers license and fell into deeper depression. I finally got fed up with all the meds and just quit taking everything but my Adderal, I can’t function without that. After a month, I had friends telling me how much better I was in being able to hold conversations and I myself thought my memory better and confusion less of a constant state of being. Turns out, that Gabapentin’s number one side effect is mental confusion and memory loss! So I was very hesitant to go back on any meds, but after nearly 4 months of very little sleep and debilitating chronic pain from all sorts of conditions, I agreed to try new meds. They worked for awhile, but now, not so much. Just wish doctors could figure out the real underlying cause for all my pain. All that to say, be very cautious of Gabapentin!
no sleep and chronic pain, I finally agreed to try some different meds. caution with
My daughter (12) was just diagnosed with generic POTS this past week. She started experiencing symptoms roughly 2.5 years ago out of nowhere. The first episode was her passing out randomly and lasting for roughly 30 minutes. We initially thought it was hypoglycemic/diabetes undiagnosed.
She is tiny (71lbs soaking wet with no fat on her at all (gymnast). Over the course of the past 2.5 years she’s experienced a variety
of symptoms, all still suggesting that she was an undiagnosed hypoglycdmic/diabetic. She drinks water constantly and if she doesnt get enough water/snacks, we found that she would pass out for very short intervals (10-20 minutes).We have seen the doctor countless times and been tested always with a negative. We have been seen countless times over the past 2 months for
Constant headaches & stomache aches, always being told it’s viral. Finally this past weekend my daughter passed out & was unresponsive for over 45 minutes along with presenting with seizure like symptoms. After thorough testing from 3 different departments & having ALL tests come back negative, even her pediatrician is now treating us like it’s all psychological. In the hospital they met with both she and myself, each for roughly 45 minutes and came back to us telling me that in their professional opinion, aside from the fact that they recognize how healthy & focused she is as a gymnast, “a breed of their own” they definately didn’t see any red flags or believe this is a “psychological condition”. After we were discharged from the hospital, the next day my daughter appeared to have 2 more very short “seizures/convulsions” and then later her legs locked and she couldn’t walk. I brought her back down to the same ER, we were admitted with more neurological tests to be later simply told it’s psychological;. In spite of me reminding the team that the psychology team completely ruled out an anxiety/psychological problem,
My daughter STILL can’t walk & her pediatrician saw her today as a follow-up & told me to bring her to school. She said she needs to calm down and relax and that she’ll be fine. I am absolutely furious!! Anyone have the same problems?
I added a post to this discussion that may help. In my research headache and stomach ache along with a POTS diagnosis leads me to recall searching up different dysautonomia disorders with those being some of the symptoms. There are several different subtypes with POTS being one of them but there are others to research and consider on her specific symptoms so I would start there if POTS treatments don’t help her. POTS treatments include increased water and salt intake and physical therapy. Compression stockings also. Of course she may be anxious because of her symptoms causing nervousness and trauma but don’t give up on your search for answers and make someone listen. She knows her body best and it took me 19 months to get answers because I was also misdiagnosed with anxiety and depression, so keep hoping and searching for a neurologist that specializes in POTS and get some answers
Hi I have just been through (and still going through) a similar thing with my 13 year old daughter. It started not long after the HPV vaccine at school. I just wondered where you are at now and how you are getting on. I really do empathise as a mum it is incredibly worrying. We have been waiting months to see a paediatrician but I am convinced it is POTs Syndrome
Kim xx
Hi – has anyone checked her blood levels of B12? or B1? I know this might sound a bit wierd but it really is a simple blood test, your doctor should do it, and is a good thing to rule these deficiencies out. If anyone had told me to have these included in one of the many, many blood labs I had done in the last several years, it would have saved me from alot of suffering.
Good luck.
My daughter started having issues right after her hpv shot. I’m now thinking it’s pots. She gets dizzy when she gets up. Everyday she has stomach pain. She started having panic attacks too. I’ve told doctors it’s from her chronic pain.
Hi Lowrissa – Our daughters are about the same age, so I thought I’d reach out. Yes, we have also had our PC doctor begin to treat us like my daughters symptoms are psychological, despite her POTs diagnosis. Her first diagnosis two years ago was Generalized Anxiety and Depression and she was put on 10mg of Prozac, only to be increased to 20mg after she attempted suicide. She is only 13yr old. The immense exhaustion and stomach aches are the worst.
At one point I read that Fluoxetine should not be given to a POTs patient. Our PC argues this and increased my daughter to 30mg this past week, which we’ve decided not to administer yet (still doing the 20mg). She began cutting recently and can barely make it to school most days. Just looking for advice and support from other parents who don’t know how to combat the pain. Thanks
Please look into Ehlers Danlos Syndrome. This condition is characterized by hypermobility (being extra flexible, double jointed and many of us are “naturals” in gymnastics, ballet, and even musicians) however, there are many conditions that accompany EDS.
POTS is one of the conditions, however, serious neurological conditions also apply and need to be evaluated ASAP in your daughter’s situation if found to be relevant. Chiari is one, where the brain tonsils “clog” the flow to the brain, cervical instability also is prominent which can also cut flow the the brain and cause spinal cord damage. I don’t mean to alarm you, but if applicable, and PLEASE KNOW THAT EHLERS DANLOS IS CONSIDERED RARE, BUT EXPERTS AGREE THAT IT IS HIGHLY UNDER DIAGNOSED. I was 40 years old before my diagnosis.
Take care and be persistent, as your momma gut is what should guide you.
This sounds just like what we went through with our then 17 year old daughter. It took us going to The Cleveland Clinic before we were diagnosed. It may be in your best interest ( both mental and physical) to contact them and talk to someone there. They were instrumental in getting her pointed in the right direction for treatment and care back at home.
How did you go about taking her there? Through ER?
I know it has been some time since your original post, but I want you to know you are not alone. 5 years ago my son had a similar story. Passing out 30-35 times a day, evolving to pseudo-seizures that would even present as though he is either drowning or choking. Waking up and not being able to feel his legs, unable to walk. Told by all the professionals that it was “all in his head.” And there was nothing they could do. We got a proper dx and help from Mayo Clinic in Rochester. As soon as we began treating the POTS with the standard salt, water, sleep, exercise he showed signs of improvement. He still has good and bad days, but nothing like where he was.
I’ve recently been diagnosed with POTS after 19 months of no answers and several normal blood tests. It took my physical therapist all of 5 seconds to watch my heart rate increase over 30 beats when going from a seated position to standing to realize it was POTS. Blood pressure only increased slightly. My primary doctor said he didn’t believe in POTS after my therapist told him but thankfully I found answers on my own by requesting physical therapy to get my strength back. Main issue was heat intolerance at onset. I also smoked which is a blood vessel constrictor. I also didn’t sweat very much at all. Had a heat stroke in August 2015 then was experiencing some left side arm and facial jaw tingling in Dec 2015 which I later found out can also be a POTS symptom. Doctor sent me for a stress test(abnormal) then a heart catheter Feb 2016 which was normal but it took two months to heal from. EKG, Echocardiogram, Carotid ultrasound and Holter monitor all normal. Started work again and 4 months later in June 2016 had a near episode of fainting from heat again and went into a severe panic attack with ER visit by ambulance for fear of a heat stroke again. Tests were all normal and no dehydration present. That episode wiped me out completely for the next six months but I have kids and had to force myself to get up daily for small chores while physically spent and dizzy but still spent all summer in air conditioned room with little activity. Was unable to do any prolonged activity and could only last 5 minutes outside in summer heat with instant headache and light sensitivity. A/C was needed constantly in summer or I became weak. After summer heat was done was able to move a little more but always kept hydrated. I did realize that after another visit to the ER from near fainting that two IV’s relived my symptoms for about three hours and I felt pretty good. Was even able to cook dinner for once. I still experience heat intolerance, dizziness, light sensitivity, memory loss, brain fog, and more during night episodes of hot flashes like trembling. I’m in early stage of menopause so any hot flashes increase heat rate because of my heat intolerance. Heat constricts blood vessels increasing heartbeat and dizziness. Be careful not to take too hot of a shower. I also suffer some anxiety because the fast heart rate scared me for so long. I’m learning to cope with symptoms and watch out for triggers. If I overexert myself then I’m wiped out and it will bring on night tachycardia and wake me out of my sleep. I sit up and slowly try to get up and walk a little and drink plenty water until it subsides. I learned that continuing to lay down doesn’t help tachycardia decrease at all. During the day if I need to rest or lay down after exertion it’s helps but it’s not recommended to be very inactive during the day if possible. Increased water intake also helps as well as compression stockings overall. I’m in my first month of physical therapy and my exercise tolerance is slowly increasing but the first month is very taxing and you will feel worse at first so don’t give up. What I’ve read in some studies is POTS patients have smaller hearts than normal and their stroke volume is lower so strengthening to increase your heart size is key for some. Increased salt intake also helps to keep up your blood volume and alleviate symptoms. Explains why the IV made me feel good. Extra water, salt, and blood volume. The ER also gave me something for nausea but I found out ranitidine severely increased my heartbeat at home. The key for me now is water. At least 3 liters per day is optimal. That equals 6 water bottles 0.5 size. I also like the compression stockings to help blood flow back up and decrease heart rate. I use the 20-30 mg pressure size. Can’t eat heavy carbohydrate meals or large meals because it brings your blood volume down for stomach digestion and heart rate increases causing dizziness. Had a bad episode of tachycardia and dizziness after a big bowl of cereal. My therapist said she sees POTS more commonly in adolescent or late teenage girls and boys and therapy is always recommended for recovery along with water and other suggestions I’ve mentioned. Hope this helps someone who doesn’t know where to turn or how to heal. The general consensus is increased water and salt(slowly) along with physical therapy to strengthen heart and lower leg muscles to help blood flow back up to the brain. Doesn’t matter if you’re an athlete or a mom my therapist has treated all types whose bodies needed strength in the key area of the lower legs she says. Other suggestions are to raise the top end of your bed 4-6 inches to retain water volume at night. And as always get enough sleep. Studies show many patients fully recover with these changes. Avoid alcohol and for me I cannot tolerate caffeine while yet it helps others. Find yourself a physician or Neurologist who’s willing to help. My area only has 2 and the wait list is very long. Studies have shown improvement in as little as three months with physical therapy so do your research and make your doctor listen or find one who will get you to physical therapy if a referral is needed.
DNRS has been healing people of POTS. You may want to check it out. I have a lot of your same symptoms, have not been diagnosed. I have mold and neuro-inflammation from a concussion and looked into DNRS for that reason.
Best to you
How does smoking effect P0TS and sweets too?
I’ve managed POTS to the best of my ability for the last eight years. Sweets definitely make me worse. I do my best to avoid cupcakes, cookies, etc. anything with high sugar makes me feel worse. Of course, there are times when I do have something but I limit the amount and try to eat natural sweet things to satisfy me. There are plenty of good sweet things to eat. I have smoked for 34 years and did not stop once I was diagnosed with POTS. It’s interesting you ask about the effect of smoking on POTS because I am going to quit smoking and just read a bunch of blogs where people who have POTS said they got so much worse after quitting smoking. This has me scratching my head because I know that smoking brings on or strengthens symptoms for me. It brings on or strengthens headaches, migraines, nausea, dizziness, fatigue, brain fog, muscle aches, etc. I have paid very close attention to how I feel before and after smoking and there is no doubt in my mind that while some days I “get away” with smoking without it adding to my POTS, a good majority of the time it makes me worse. So I am quitting as I find it hard to believe it could make me worse. After all, my body is trying to heal and straighten itself out so how could giving it toxins and nicotine be helpful.
Hi Chris, I just wanted to let you know I was a smoker for almost 20 years & I have EDS & POTS. I quit smoking last year & my symptoms are MUCH worse. I feel like I am learning how to live with these both all over again. Nothing is the same, they things that are are much worse. I don’t want to ever encourage someone not to do something that would benefit their long-term health but I don’t want you to find out the hard way either.
How have Energy Drinks “been proven to worsen symptoms of POTS and ruin chances to improve symptoms”?
I really need to know.
Also,
Is caffeine OK to use to treat POTS?
Many thanks and best wishes,
Mim
postural orthostatic tachycardia (POTS) is something I had no knowledge of until now. I was in hospital for most of 2019 due Acute Pancreatitis
I lay in bed waiting to die. But God had other plans and I am slowly recovering, finally. Get squared away and moving about once out of bed is still difficult. I also have inner ear issues which further complicates matters.
I have a long way to go but the info. gathered from those using this site is very helpful. Thank you. cfa
Hi what kind of sports and exercises cant we do? Such as kickboxing and HIIT.
Not everyone’s solutions will be the same and not everyone has the privilege of avoiding the nots or having access to the dos. You must and you must not is horrible titles. It’s gatekeeping nonsense. There is no size fits all.