Postural Orthostatic Tachycardia Syndrome--Purple Toes

I am 19 years old and I have POTS syndrome. Believe me when I tell you that I understand wanting answers, bouncing from doctor to doctor, and the frustration that you are feeling. If you do, indeed have this syndrome, suggest a tilt-table test. It was the first (and only) test that I failed, which proved that I have this syndrome. It took doctors five years to figure out what was wrong and the condition was misdiagnosed many times. I now have permanent damage done because of so many wrong diagnoses. The doctor who informed me of my disease told me that the most dangerous thing for a POTS syndrome patient is to see a doctor who is unaware of the disease. Try increasing your salt intake, try drinking more fluids and especially Gatorade or other sports drinks with a lot of electrolytes in them.

Some other symptoms of this disease are: passing out, migraines, headaches, dizziness, limbs falling asleep, and constant chills. Although some of these are still symptoms that I live with, I am taking beta blockers to slow down my heart rate. This makes me tired and doesn't help the chills or my limbs falling asleep, but it does help control my passing out spells, headaches, and the like.

If you get too hot, eat too much, don't drink enough fluids, are stressed, don't maintain normal sleep patterns, or don't get enough sleep, you could be worsening your symptoms.

I hope this helps. Don't get discouraged if this is your diagnosis. I thought my life was over when I was reading through the symptoms and triggers, but I have lived with this for my whole life and I am now on my way to medical school. POTS syndrome isn't fun, and it isn't something to fool around with. With the proper care and the proper knowledge, it is manageable. Ask your doctor. I would have saved a lot of time, a lot of money, and a lot of misdiagnoses if I had just asked. I wish you all the best of luck and I hope this helps.

My guess would be that her toes get purple any time she's been sitting up or standing for a long period of time.... at least that's when mine get purple.... it's caused by my POTS ... If you suspect that she has it you should find a POTS Specialist .. there are not many of them but you can find a list of them at Dinet.org .... they will do a tilt table test ... it is the only way to diagnose POTS... POTS is a form of Dysautonomia and is a very serious and life threatening condition... it is critical that you find a specialist who knows how to treat it and not just any cardiologist who said they know about it because most don't but are too egotistical to admit it and a couple have almost killed me.... at you can also find a complete definition of what Dysautonomia actually is and compare her symptoms... I wish you luck this is not a condition that is easy to manage, understand or LIVE WITH... but even tho there is no cure symptoms can be alleviated!
Be WELL...
...if you have any questions Samantha Gilliland
POTSY GIRL XD

First off, everybody please try taking a B-100 every day. My parents had peripheral neuropathy, and I studied the medical literature, and found that at the heart of it is a vitamin B deficiency.

That said, please also consider a psoriatic arthritis diagnosis. I was diagnosed with this after years of not knowing why I was in pain, my toes were swollen, and I had skin lesions.

Hope this helps!

I have purple toes almost all of the time....especially when Im sitting for any length of time. I also have very high blood pressure even though I am on medication. My doctor just looks at them....presses on them and then says and does nothing else >:( Im not sure what else to do, but it is very concerning to me. I get headaches almost daily and everytime I stand, whether I do it slowly or not, I am dizzy and have to steady myself.

I am now 50 and started having painful purple toes with dots that would eventually shed outer dead skin when I was in my 20's. over the 30 years I have had at least 10 episodes where putting on shoes was painful and sometimes impossible and even sheets touching my toes would cause pain. I went to Univ. of PA hosp and Dr's were baffled and finally diagnosed aas cholesteral embolism. This is when pieces of cholesterol travel down and lodge in the toes blocking circulation. I am in god health otherwise and have learned to cope with episodes.

For starters. POTS Postural Orthostatic Intolerance does not always respond to everyone in the Same way! Doctors for years have misdiagnosed patients because they had not been taught in Med School what some of the more unrecognized illnesses were. The non sense that blood work, cardiologist etc would need to be done to "Confirm" such a condition is incorrect. What is now recognized in the medical community is a "Tilt Table Testing" in which the patient is tested by laying flat for a matter of time, while having his or her bp/ pulses taken. After a certain period of laying flat you are then put in an upright position, again your blood pressures and pulses are taken. If your pulse increases dramatically then you can be considered to have the condition. Simple enough to do this procedure in the comfort of your own home, using a blood pressure cuff, that gives the Blood pressure reading as well as the heart rate. Write the numbers down and the next time you go to your Dr give it to him or her to look at. If you get light headed when you first get up, just go slower...sit first before standing up. Seriously its just a matter of common sense. The medical community can be your friend or foe, but only You., yourself know how your feeling. A little Faith in the good Lord has never hurt either, I have personally found that when Drs could not help to take it to a Much Higher Authority, who would KNOW More about us anyways than the Creator or some Dr who may or may not have your best interest at heart.

I too have traveled a journey of finding out what was wrong with me. Two years ago I ended up in an ER with what they called a severe case of vertigo which had lasted over 8 hours. My hand and arm to my elbow was white and numb. I had experienced the blue / white feet and finger issues for years off and on. After many referrals to many specialists, tons of blood work, and tests I was told I had everything from Lymes Disease to MS. I finally came across a Neurologist who listened to everything and did some simple physical test in his office. Based on that, he recognized that I had Autonomic issues and referred me to a Neuro who specialized in that area. That is the key, you have to find someone who understands the Autonomic Nervous System and how other issues relate. After a full Autonomic work up that includes a Tilt Table Test along with four other tests, I was told I have POTS. I can sympathize with all regarding the fatigue, pain, cold hands and feet...blue toes, etc. My life was at a stand still as they experimented with various drug combinations. Everyone reacts differently to this syndrome and what works for one person does not work for the next. That's why you really need to find a doctor who understands this syndrome. A few suggestions that I can make based on all of my research and experience is:
1. Play with your caffine intake. Some people it helps and some like me, it makes things much worse.
2. Drink TONS of water. I drink about 60 to 80 ozs a day. I have learned if you drink through a straw...you drink more.
3. Exercise each day, even if it's for 5 mins. I have a stationary bike that I ride from one commercial break to the next in the morning.
4. Make sure you get a good nights sleep. A rule of thumb, if you aren't dreaming you probably aren't getting enough REM time.
5. Take Thermotab Buffered Salt Tablets. I take 6 per day.
6. Take Deglycerized Licorice Root. This with the salt tablets have been the game changer for me. I take 4-6 tablets (450mg each). I found this on the internet about a year ago. What a blessing!! I could barely make it through the day before I started this routine. 1 week in and it was incredible the difference. The lightheadedness was basically gone!
7. Wear compression stockings. They do make a difference.
8. Learn patience, not frustration. Be open minded to the drug thearpies that doctors suggest. Make sure you keep an open communication with their office and let them know what is happening. My rule of thumb is try something for about a month. If it isn't helping then I am calling to see what the next option is. Keep in mind though, some drugs take time to get in your system and make an impact. Your doctor will let you know which ones those are.

I was a healthy, active 30-something year old when all this started. It is a mental battle that is exhausting at times. However, know that as you get further in to this, your natural instinct to survive kicks in. You cope better. When your hands and feet are so cold that it hurts to walk, you know you need to just put on two more pair of socks and two sets of gloves and go on with your day. I found that my mental state severely affects whether it's going to be a really bad day or just another day. The more stressed you are, the more impact on the blood flow, the more symptoms, etc.

Good luck and God bless.

my daughter has the same problem and is 14 she was born with a heart problem svt (spontaneous ventricular tachycardia) and I thought it may have been because of this but our gp says her circulation is fine (despite a very irregular heart beat which she didnt bother to listen too) and suggested raynaurds disease I would ask your doc about this and Lm going to ask mine about yours lol !

congenital heart problems may be due to prenatal low B12.  low B12 causes circulatory problems too.  you and your daughter should be tested with these three tests:  B12, homocysteine, methylmalonic acid.  B12 deficiency is very common, and exists even in the so-called normal range of B12 (homocysteine and methylmalonic acid may build up in a person who doesn't have enough B12) 

POTS can be a sign of B12 deficiency. 

I suffer from purple toes and fingers, have all my life. They are constantly cold and sometimes they are "freezing" but sweaty. I have a very high bpm it generally ranges from a low of 85 up to 125. I get migraines on a daily basis(don't think this is normal either) but I had no idea they could all be linked. If anyone has advice or comments please let me know.

Thanks!

I just turned 15 and my toes are ALWAYS purple in the winter, it never goes away.. they are really dry and the toes get pretty big. What is this? 

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I have never heard that pots is life threating why do u think that who told u that I am very confused now cuz all I have ever been told is that it won't kill me I will just always be sick? ***this post is edited by moderator *** *** private
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I am by no means an authority on any of this. I too am still trying to be an advocate for my own health concerns.  I do have a couple comments that may help a few in here.

Raynaud's Phenomenom is similar to but different from Raynaud's Disease.  The Phenomenom is usually (almost always) caused by some underlying issue.   It is good to treat symptoms but I'd insist on finding out the why!  I found out that a gluten intolerance can be one of the causes.  I am now off gluten, but still occasionally get the purple toe on each foot and the tiny red blisters.  I am still researching this as I'm not sure if I now have permanent damage from years of gluten intake.

Along with the above, the migraine's can also related to gluten.  Mine surely were.  Check with your doctors and make them listen to you.  They are trained to treat symptoms with medications.  I went for years being medicated for conditions I DO NOT have.  We have to trust them but make sure they've heard you to your satisfaction first.

I have not been tested for Celiac's Disease because I would need to go back on the gluten in order to test.  Maybe some of this could be explained by this under-diagnosed condition.

?????

Now I'm off to do more research on some of the things you all suggested.  Thanks to all of you for taking time to add to this discussion.

 

Im struggling with a similar problem my hands and feet are constantly cold, they go purple, sting and itch mostly on the left side. There are also purple lines goin across the toes and it's quite painful. My fingers are also cold but only 3 on the left side.I also suffer from pain in my lower back, I get pins and needles with sharp shooting pains, goin from my lower back down into my knee! The pain is usually on one side but seems to have worsened and is now on both sides. Could these two problems be linked to each other? Any suggestions are appreciated

I have just recently been diagnosed with POTS. my doctor told me that I have an 80% chance of growing out of it in 2-5 years. Have you ever grown out of it?