May 25, 2012

Could A Dog Prevent You From Fainting?

Yes, a dog can prevent you from fainting, if you are lucky enough to have one of the very special dogs trained by Canine Partners for Life, a non-profit organization based in Pennsylvania.  Canine Partners for Life has placed three "Cardiac Alert Dogs" into service so far, and they are working to train more dogs to do this.  The three dogs have been placed with one Neurally Mediated Syncope (sometimes called NCS/Neurocardiac Syncope) patient, and two POTS patients.

The dogs are trained to alert the person in advance of a faint, so the person can safely lay down before fainting.  Some people with NCS, POTS and other health problems that cause syncope, can faint without any warning.  This can lead to serious injuries, like concussions, broken bones and traumatic brain injuries.  By alerting the person to an impending faint, the dogs are allowing these individuals enough warning time to lay down, so they can avoid dangerous falls.

It is not known exactly what the dogs are detecting, but it is believed that they can sense changes in the body related to a drop in blood pressure.

One young woman, Shannon, who received the dog had experienced 13 concussions in one year from all of her fainting spells, and she had to wear a helmet at all times just to prevent any further head injuries.  Since she has begun working with her Cardiac Alert Dog, she has not had any injuries from fainting and she has been able to stop wearing her helmet.  See Shannon and her dog Clover on ABC's World News Tonight With Diane Sawyer.

There is a growing demand for Cardiac Alert Dogs, and right now there aren't enough dogs who are trained in this capacity.  POTS Grrl has been in touch with Canine Partners for Life to discuss what the dysautonomia community can do to help support the training of more dogs in this specialty.  Stay tuned for more info!

May 23, 2012

New Study Links Sjogren's and Dysautonomia

Hot off the presses!  A large groundbreaking research study on the prevalence of dysautonomia (malfunction of the autonomic nervous system) in Sjogren's patients has just been published:
Autonomic symptoms are common and are associated with overall symptom burden and disease activity in primary Sjogren's syndrome

In summary, this was a large multi-centre study that included over 300 Sjogren's Syndrome patients and 300 controls.  They determined that a whopping 52% of Sjogren's patients had dysautonomia!

This is good news for everyone in the dysautonomia, even if your dysautonomia is not caused by Sjogren's Syndrome.  Here's a little math to explain why...

-there are 7 billion people on planet Earth...
-Sjogren's is estimated to impact about .5% of the global population...
-that equates to about 35 million people on the planet who have Sjogren's...
-if half of them have dysautonomia, that is 17.5 MILLION people who have dysautonomia associated with Sjogren's

The more people who have dysautonomia, the easier it will be to convince policy makers to fund dysautonomia research and to convince drug manufacturers to develop new drugs to combat dysautonomia.

Since I was diagnosed with Sjogren's as the cause of my POTS and autonomic neuropathy, I have been discussing my situation with many other POTS and Sjogren's patients, and through my own anecdotal research, I had decided that many POTS patients probably had undiagnosed Sjogren's, and many Sjogren's patients probably had undiagnosed dysautonomia.  I had asked in the POTS patient forums "who has Sjogren's?" and heard from over 30 people in a very short time.  I also heard form many POTS patients whose doctors suspect some autoimmune problem as the root of their POTS symptoms, but they cannot pinpoint exactly what autoimmune issue is going on.

Then I had asked in the Sjogren's patient forums, "who has POTS?"  I got a lot of "what the heck is POTS?" responses and a few people saying they had been diagnosed with POTS and Sjogren's, but that their doctors didn't seem to think they two diagnoses were connected.  This drives me nuts, because in most patients who have been diagnosed with POTS and any autoimmune disease, it probably is the autoimmune disease that is causing the POTS symptoms.  How could their doctors not realize that?

Then I rephrased my question to the Sjogren's community, since most of them are seen by rheumatologists, and I assume rheumatologists are even less likely to know about POTS than a cardiologist or neurologist (which are the type of doctors most POTS patients use).  Instead of using the word POTS, I asked the Sjogren's patient groups "does anyone on here get a really fast heart beat and lightheaded every time they stand up?"  I got a huge response.  Even though this was very unscientific, it proved to me that there was a link that deserved some further attention from real researchers.

Drawing the link between dysautonomia/POTS and Sjogren's is not just about adding an extra diagnosis to your chart.  Understanding more about what is causing your symptoms is really important. It can give you peace of mind to understand what is causing your symptoms.  More importantly, it can lead to a more tailored approach to your medical treatment, which should lead to a better quality of life for you.

May 10, 2012

Greg Page's experience with dysautonomia is in the news again!

Why Poor Blood Flow Could Be Giving You Funny Turns - The Daily Mail, May 7, 2012

In this article a British newspaper, the Daily Mail, tells the story of Greg Page who is a member of The Wiggles, a popular children's entertainment group.  Mr. Page abruptly left the band in 2006, due to increasing symptoms of dysautonomia.  Mr. Page suffered with these symptoms for about 12 years and he was finally diagnosed after seeing over 60 doctors.  He recently returned to The Wiggles after a six year break to focus on his health.

May 8, 2012

New Options for POTS patients

Many POTS patients have been prescribed beta blockers, Flourinef and Midodrine to try to alleviate their orthostatic symptoms.  For some people, these work, but for many others, they do not.  

Autonomic experts have used other drugs like Octreotide and Ritalin on some patients, but this practice is not widespread and many doctors who are not experts in autonomic disorders probably don't feel comfortable trying "unproven" drugs on a POTS patient.  Here are two recent retrospective research studies on the success of using Octreotide and Ritalin in POTS and OI patients from Dr. Blair Grubb's team at the University of Toledo Medical Center:

May 5, 2012

PICC vs. Port vs. Regular IV lines

I get asked by many POTSies who are about to begin IV saline therapy whether they should get a PICC line or a chest port.  I am not a doctor, and I think that is a decision that has to be made between the doctor and the patient, but here's is some information I have learned that you may find helpful when you are discussing this with your doctor.

The method of delivery you choose should be based on several factors:
-do you have any good veins that can be used for IV saline?
-are you a "hard stick"?
-how long do you plan to get IV saline therapy?
-how often do you plan to get it?
-how much time do you plan to spend at the place you will recieve the infusion?
-are you comfortable getting infusions at home?
-would your insurance cover infusions at home?
-are you mature enough or physically able to manage your IV saline at home?
-are you getting anything in your IV saline besides just normal saline?

One thing I would always recommend is trying out IV saline for a week or so on the schedule your doctor thinks would help you best, before you get a PICC or port put in.  That way, you will know for sure whether that amount of saline is helpful to you.

If you only need saline once a week or less, you probably wouldn't need a PICC or port, so long as you have a few decent veins that could be accessed with a regular IV needle.  On the other hand, if you are needing 1 liter of saline everyday, you will probably run out of good veins pretty quickly.  I would always err on the side of caution and use my arm veins for IV saline, at least until you know for sure that IV saline is really helping you.  There is no point in getting a PICC or port put in if you are not going to use it.

Unlike regular IV lines, which usually require you to go to the ER, local doctor's office or an infusion center in order to obtain your IV saline, you can get your saline at home.  Home IV saline can be done with a regular gravity drip line, or with a small battery operated pump - so you can more precisely control the flow rate and timing of the dose.  I found it very helpful to use a battery operated pump, so I could set the pump to infuse the saline into my port at 100ml/hr over a 10 hour period, thus finishing the whole 1 Liter bag of saline overnight.  That way I didn't have to be hooked up to tubes and saline bags during the daytime and I was more free to work on my Physical Therapy and other exercises to help me get better.

Once your doctor has determined that IV saline will help you, you need to think about how long you expect to be on the IV saline therapy.  That can be really hard to estimate, because it's not like you have a date in the future on which you know your POTS will be cured (wouldn't that be great?).  If you plan to be on it for more than one month, and you are getting it more than once a week, I would really consider a chest port, rather than a PICC line.

Before you have any medical device implemented into your body, you should ask your doctor for a Factor 5 blood test.  This is not done standard before inserting PICCs or ports, but it should be.  About 8% of the caucasian population has Factor 5, which greatly increases your risk for Deep Vein Thrombosis (a potentially deadly blood clot).  I do not know what the percentage is in other races, but you should still ask your doctor about this.  It is a simple test and it could save your life.  I know two POTS patients who had Factor 5 and developed massive blood clots as a result of their PICC lines because no one checked them for Factor 5 before inserting the PICCs.  They are both OK, thank goodness, but they can never get a PICC or port again.

Once you have ruled out Factor 5 and weighed all of these issues, if all things are equal, here are the differences between PICCs and chest ports you may want to consider.

Pros of PICCs
PICC stands for Peripherally Inserted Central Catheter.  PICCs are cheaper for your insurance company, and depending on your co-pays, may be cheaper for you.  PICCs can be inserted bedside by an IV nurse without any anesthetic.  PICCs are easier to remove at the doctors office.  No sedation is required for PICC line insertion or removal.  You can get a dual lumen PICC - one lumen is used to draw blood when needed, the other lumen is used to deliver your IV saline treatments.  You do not want to draw blood on a regular basis from the lumen that is being used to deliver your IV saline.  You are more likely to clog up the line if you do that.

Cons of PICCs
These are usually used for 3 months or less.  The longer you keep it in, the more risky it becomes that you will develop an infection or a blood clot.  There will be a hole in your arm that leads to a vein, that leads directly to your heart.  You have to keep a bandage over this hole at all times.  If you are allergic to the bandage, it will itch like crazy and there is nothing you can do.  You cannot take the bandage off, unless it is to change it out for another one.  You can get rashes under the bandage, especially in warmer weather.  There are tubes sticking out of your arm at all times until you have the PICC permanently removed.  You cannot get your arm wet.  You have to wear a stupid contraption in the shower or bath to keep your arm dry, which makes it hard to wash your hair and your opposite arm armpit.  The waterproof contraptions don't work that well, so your bandage is likely to get wet whenever you bathe or shower.  This increases the risk of infection.  You have to change out every wet bandage, and everytime you change out the bandage, you also increase the risk of infection.

Even though PICCs can been inserted bedside without any sedations, many people complain that it REALLY hurts when they put in the PICC line.  You will have a tube, about 40 centimeters long shoved into your arm vein until it reaches a spot just before your heart.  I have heard some people say it didn't really hurt more than a regular needle stick.  However, I have also been sitting next to someone getting a PICC line inserted and I have never heard such awful blood curdling screams in my life - until I had my own PICC line inserted.  I had my PICC line inserted under flouroscopy by a radiologist - rather than by a nurse at my bedside.  Flouroscopy is just like a x-ray video camera that displays the moving x-ray image on the screen.  This helps ensure proper placement of the PICC near the heart.  The radiologist was kind enough to give me a small injection of lidocaine in the area he was about to stick the tube in, to help numb me and ease the pain.  We didn't know it at the time, but my body does not respond to Lidocaine.  It does not numb me at all.  So I felt all 42 cm of PICC tubing being shoved into my vein.  I felt it hit the wall of my vein near my heart.  Then the radiologist realized it was 2 cm too long, pulled it out, made the tube shorter, and shoved it back in again.  I have never felt such pain in my life.  I kicked, squirmed and screamed liked a raging lunatic the entire time.  The PICC lumen left my armpit sore for the whole time I had it in.  After the PICC was put in, I was told this was pretty normal because the PICC tube runs through a vein that can irritate the nerves near your armpit.

My PICC worked fine for about 3 months, then one day I woke up with a purple arm.  My IV nurse and my doctor both advised me to go to the ER.  The ER doctor was apparently blind because she said nothing looked unusual about my swollen, cold, Barney the dinosaur purple arm.  I had to stay overnight in the hospital and then next morning another doctor pulled out the PICC line.  That hurt really bad too, and it felt like it had attached itself to the vein near my armpit.

I also got a yeast infection on the skin under my bandage, despite the fact that we were very diligent in keeping it dry, changing it weekly, etc.

I will never get a PICC line again.

Pros of Chest Ports
Chest ports can be left in for years, even if you use them everyday.  Chest ports have a lower risk of infection, since there is no open wound that leads to the inside of the body.  The port is placed under the skin, usually just below the collarbone above the left or right breast.  The scar is about 1 inch long, and not bad if you have a good surgeon put in the port.  You are usually given light sedation to have the port put in, which is a pro or a con, depending on how you look at it.  Personally, I prefer to be knocked out when I am going to be poked, prodded or cut with a surgical knife.

When you are not accessing the port, there are no needles or tubes sticking out of your body, and no need for a bandage or dressing.  You can hide your port, which kind of looks like a bottle cap under the skin, with a halter style bikini or tank top - or any shirt that covers the collar bone area.  No one will know you have it unless you show it to them.

If you have bad veins or you hate getting stuck with needles all of the time, you can have your blood tests done through your chest port. The needle can be left in the port for up to a week, and it does not hurt once it has already been put in place.  That way, if you have an infusion on Monday and you are getting some blood draws on Tuesday, you don't have to get stuck twice.

Cons of Chest Ports
While insertion of a chest port is considered a minor surgical procedure, it is still a surgical procedure.  If you do not tolerate sedation well, this may not be a good option for you, as most people are given mild sedation prior to the port installation procedure.  Depending on your insurance, it is a more expensive procedure to put the chest port in, which is usually done in an operating room by a general or vascular surgeon and an anesthesiologist.

Unlike a PICC which can just be pulled out of your arm by a doctor at your bedside, a port has to be surgically removed.  This is another minor surgical procedure and most people are given mild sedation prior to the procedure.

In order to use the chest port for a blood draw or an infusion, you have to insert a Huber needle into the port.  Since the port sits under a few layers of your skin, you feel a little pinch when the needle is inserted, although it does not hurt as much as getting a regular IV needle stick, since the needle is not piercing your deeper tissues or your veins. After it has been used often enough, the skin over your port gets something like a callous, and it does not hurt anymore for most people.  You can also use prescription EMLA cream (a lidocaine like cream) to numb the port site 20-30 minutes before you are stuck with the needle, so you don't feel it at all.

What about Mid-lines?
I am not that familiar with mid-lines, but after speaking with a few doctors about it, it seems like they have all of the cons of PICC lines with only a few of the benefits of a chest port.  If you have to have a surgical procedure to insert and remove them anyway, you might as well go for a regular chest port.

What if my port or PICC line stops working properly?
You should also have an "in case of emergency" game plan in place with your doctor in case your port or PICC becomes clogged or stops working properly.  What should you do if that happens?  If you have to go to the ER to have a port study, does your local hospital have that available?  Should you ask for your doctor when you go to the ER, or should you ask for the surgeon who put your port in?  What should you do if your doctor is on vacation or if this happens during a time when your doctor's office is closed? 

Note, if you are allergic to CT contrast dye, you cannot have a normal port study, which uses the same dye.  If you are allergic to CT contrast dye, there is an alternative port study procedure they can do, but not every hospital has it available.  You need to know whether your local hospital has this or not.

Despite the risks and challenges of managing a PICC line or chest port, there are many POTS patients who have reclaimed their lives with careful use of IV saline.  Getting a PICC line or a port installed is a serious decision that deserves a careful consideration before moving forward.  You and your doctor need to have a discussion about this before hand, and have a game plan set up to deal with any problematic situations that could arise.

May 3, 2012

POTSgrrl is now on Facebook!

Check it out and "Like" us.  The POTSgrrl Facebook page as a convenient way to connect with other POTS patients, to hear the latest medical news about POTS and to see the latest blog posts from POTSgrrl.