Tuesday, 14 October 2008

Postural Orthostatic Tachycardia Syndrome

POT's syndrome is where the blood pools http://heartdisease.about.com/cs/arrhythmias/a/Syncope2_2.htm in the legs and as a result of this the heart rate increases upon standing by over 30 beats per minute (usually within ten minutes). Patients very often go into tachycardia http://www.healthscout.com/ency/68/729/main.html and quite often pass out.

My Profile

n May 2008 I was sitting on the train travelling into London to work. The train was very crowded and suddenly I felt my heart rate going very fast and I had to get off the train. I had been experiencing a lot of stress at both home and work and I just thought that it was a bit of a panic attack. I went straight home but had to immediately call an ambulance as my pulse was racing. Apparently it was 200 beats per minute. I was admitted into hospital. I was lying on the stretcher for about an hour and by the time the nurse did the ECG my pulse had gone back to normal. I was dismissed from the hospital and given a beta blocker. This made my symptoms much worse and the following week I was admitted by ambulance again into hospital.

As I already had Marfans Syndrome the focus was on this condition. I had a CAT scan and various blood tests the results of which were all normal. I was hooked up to a heart monitor and I began to notice that if I stood up from either a lying or sitting position that my pulse would rise to 150 beats per minute. I informed my consultant of this and he carried out a standing ECG which showed the symptoms of tachycardia. I was released from hospital but needed further investigations. These included a tilt table test, various urine collection tests, numerious blood tests, tests on the adrenal gland, MRI scan, heart and blood pressure monitor tests and autonomic function test. All tests came back normal apart from the tilt table test and the heart monitor tests. I had to be admitted another two times into hospital as I was very unwell.

I have been more or less bed bound now since May as the doctors are finding it hard to give me suitable medications. I have researched POTS now and have found that a lot of patients are intolerant of certain medications. I am taking paediatric atenolol. I take 5ml syrup a day but have to split this three times a day as I can not take the full 5ml in one go. This does bring down the pulse but I can not seem to take enough of the medicine to enable me to exercise (or even walk up the stairs without becoming exhausted). I also take a steroid called fludrocortisone (0.5mcg per day). The purpose of this drug is to help the body retain salt and thus increase blood volumes.

I am due to be admitted into hospital again to trial a new drug with the atenolol. This drug is Midrodine. I hope that this drug will work because if it does not I may have to have a pace maker fitted and I do not relish the thought of this. I will let you know what happens, well that’s if I am here to tell the tale.

Symptoms of POTS

I have experienced the following symptoms:

Tachycardia, syncope (fainting), extreme fatigue, headaches, nausea and in particular morning sickness, extreme thirst, constant urination, restless legs at night, get very hot and can not tolerate heat, diarrhoea or constipation, difficulty swallowing, stomach pains, difficulty eating due to bloated feeling, weight loss, can not tolerate taking a bath or shower (the heat of the water exacerbates the symptoms).

Useful Tips

Drink plenty of water every day to increase the blood volume.

Wear support hosiery which provides compression of the veins. Tights would be preferable to stockings. These work in some patients. I have read that some patients use g-suits but I have not tried this myself yet.

When bathing do not have the water too hot.

Do not stand in the shower but sit on the floor.

Do not bend over, always bend with your knees.

Also when standing still try to cross your legs.

Do not drink alcohol as this makes symptoms much worse.

It is sometimes very difficult to eat large meals. I found that my tummy felt very bloated and that I often felt very sick. Also I had a very weird sensation in that I felt that my throat was closing up and that I could not chew my food properly. I also suffered with either diarrhoea or constipation. After researching POTS I found that food could play an important part in helping to improve symptoms. I now follow the GI diet http://www.the-gi-diet.org/lowgifoods/ (I do not actually diet but I mainly eat GI foods). I have also cut down on dairy products as I have read that they do not help POTS patients. I am mindful that my calcium intake is now lower and the only way that I can naturally address this is to eat nuts, oats and berries which I believe are high in calcium. I now also avoid garlic as this lowers the blood pressure as do nitrates (these can be found in greens and carrots and also I believe may be in tap water but I think this would depend on where you live). I also make sure I eat two bananas a day because the steroid depletes the body’s supply of potassium and magnesium (magnesium can also be found in nuts). Every morning I juice a lemon and add the juice and lemon to a cup of boiled water. I add a pinch of cinnamon, small pinch of ground cloves (only a pinch as this is a very strong spice and you should not use too much) and a pinch of ginger. These are all good for circulation. I also add half a teaspoon of honey as this is very good for the kidneys. I also drink one glass of Cranbury juice per day as this is also good for the kidneys (I am aware that this may increase my blood sugar levels). I have read that two strong cups of coffee in the morning can help to raise a low blood pressure but as I have eliminated all caffeine from my diet I have not tried this. This diet seems to be really working as for the first time in my life I have not suffered with the symptoms of irritable bowel syndrome in that I am regular now and have normal stools. The most important thing I think is to eat little and often. I eat at least every three hours so as to make sure my blood sugar levels do not drop. Some POTS patients recommend the sports drink Gatorade to help fight the fatigue symptoms. For myself I just found that it increased my heart rate so was of no use, it might be to you so it’s worth a try. I also find that high protein cereal bars are a handy and quick snack.

Exercise is very important although very difficult at times. In particular exercise the legs. An exercise bike is a good form of exercise for the legs and if you use one with a chair and so that you can lay flat this would be very helpful. Start off gradually to increase the muscles in the legs. If you can not get out of bed it is even more important to try and exercise the legs to keep the circulation going. Lie flat on your back and then you can raise your legs and pedal is if you were riding a bike. Or you can raise one leg at a time slightly then point your toe and then move the ankle so that the foot becomes straight again. You will feel this stretching the calf muscles at the back of your leg. With POTS even these simple exercises can be exhausting so do not be frustrated if you can not do these for long. Even if you can manage a minute several times a day it will help your circulation.

When you are in bed raise your head approximately 12 inches (use pillows but you could get an electric bed although this is an expensive option).

I would be really interested to hear if anyone has more useful tips?

Does anyone else suffer with both Marfans Syndrome and Pots Syndrome? I would be interested to hear!


Jessica said...

I am in the process of being diagnosed. They believe I may have POTs. I'd love to hear more about the tests you had to complete to get your diagnosis.

Theresa said...

I am also in the process of being diagnosed, I have had these symptoms for almost 7 months now. Initially I went to the ER and was admitted with sinous tachycardia (my resting heart rate was about 120 and standing jumped to 150). After a couple days I was released since the cardiologist and pulmonologist did not see anything wrong. Tests I intially received in the hospital were an electrocardiogram, CT of my abdomen and neck (I thought I was choking), pulmonary function test (I thought I could not breathe), and sent home with a holter monitor. Every test came back normal.

They believed I was having some kind of anxiety attack which was completely frustrating because I know my body and I was convinced that they were wrong. I went to the ER 2 more times before the hospitalist decided to start me on a beta-blocker, metoprolol, to slow the heart rate.

Eventually I was referred to an Endocrinologist, they specialize in endocrine disorders such as hypothyroid, which I presented symptoms of. They tested for thyroid levels, dopamine and norepinephrine, and a tunmor of the adrenal gland (urine catecholamine test). I saw a neurologist for headaches and fainting, he did a test where they attach needles to your head, I think it's called an ECG. Everything came back negative.

Finally 5 months later I was referred to an electrophysiologist. By this time I had been on another beta blocker, propranolol 3 times a day and ativan for anxiety. I had seen a therapist on my primary MD's recommendation, just so I could talk about my situation and frustration.

Yesterday I had a stress test, and the tilt table test. The tilt table test was positive as I fainted after they gave the drug isuprel to exacerbate the symptoms. My resting heart rate is still about 100 without medication, and during the test hr jumped to 190. I have an appointment with the EP next week to hear my results.

I have not been diagnosed with POTS but my symptoms are very identical to them:tachycardia, profound thirst, intolerance to heat, anxiety, inability to exercise (or be active at all), bowel problems, etc.

I have found that certain foods exacerbate the symptoms, these include foods with nitrates such as hot dogs, pepperoni, processed sandwich meat (like turkey). Obviously I have completely cut out caffeine, and alcohol dulls the medication's effects so that needs to be avoided as well.

Also, sleeping that came so easily to me before is very difficult. Initially I had very vivid dreams, I would wake up gasping for breath and my HR would be in the 130's. I think my mind was trying to compensate for a fast heart rate, and not the other way around. My husband bought me a pillow with an incline and that seems to work really well for me.

I know this is long but a diagnosis was/is a really long process since they have to rule everything else out. And by the way, I really had no symptoms before March 2010 and it hit me like a freight train. I just turned 30 and I believe that the MD's intial diagnosis was biased by my age and sex. You have to insist to the MD's that you really are experiencing something that is not normal for you. It is your life after all!

pinkmother said...

I too have both Marfans and POTS. I wish I had this rare luck in playing the lottery instead.

I felt that I went downhill after having my babies. My kyphosis rapidly progressed and I had 12 vertebra fused when my youngest was 14 months old.

Additionally, I experience Hashimotos (thyroid); dural ectasia, hyper sensitive gag reflex, blood pressure of about 90/62, heart rate about 120, leg twitches at night, chest pain when I feel like I can't get enough air in, exhaustion, dizzy, light headedness.

All that fun stuff.

I try to focus on the fact that my needs are being me, and not the fact that my wants are not all in check.

It is a tough battle, not knowing what each day will bring, not being able to make a plan, and the guilt of dumping so much on my dear husband.

Lynne Campbell said...

Hi Pinkmother. You are the only person that I have spoken to that has both syndromes. My consultants thought that I was the only case as they can not find any other recorded cases. I have always been partially sighted due to the marfans and this has always been a problem for me especially when I had my children. But I always led a fairly normal life. The pots tho was like a bolt out of the blue and I thank god that most days I am better. The only days I tend to suffer now is around my period time of the month. I no longer bleed due to the coil but I think my hormones make me I'll. I really think you should get your hormones tested if you can. It would be nice to chat more if you want to. Kind regards Lynne