Okay, I thought we could begin the "treatments" portion of my blogging with a real demonstration of how many pills I have to take a day. This picture is how many pills I have to take every day:
Doesn't that look like fun? No, it isn't fun, but so far it has been necessary for me to have some semblance of a life over the past few years. All of the treatments for POTS are for symptom relief only (ie none of them cure it in any way) to make life a little more livable for us. This post is going to deal with the prescription meds only, then later I will talk about lifestyle changes and supplements that can be helpful.
Remember, none of what I tell you is meant as medical advice but is for informational purposes only. Do not change your medications (start or stop) without contacting your doctor.
One of the best resources that I have found for POTS drug information is dinet.org. They have a great section that describes the most commonly prescribed drugs for dysautonomia and how they might be helpful, as well as non-medication treatments. I also have a great article by Dr. Grubb about POTS and treatment options on my website www.wheredidigetthislemon.com (Go under Links and down to POTS articles to find his article).
Here is a quick rundown of some of the most common drugs used for treatment of POTS (keep in mind this is a super quick summary and barely skims the surface about most of them):
Beta blockers: since high heart rate upon standing is such a huge component of POTS, beta blockers can be very helpful to reduce heart rate. There are many POTSies that cannot tolerate beta blockers or do not find them to be helpful. They aren't for everyone, but can be a lifesaver for some.
Midodrine or octreotide: these are vasoconstrictors that can be helpful to decrease blood pooling in the legs and can increase blood pressure (helpful for orthostatic hypotension as well)
Florinef: a mineralocorticoid that increases the amount of salt retained by the body, thereby increasing overall fluid volume/plasma volume.
Mestinon: usually given for Myasthenia gravis, but recently has been found to be very helpful for some POTS patients. It inhibits the breakdown of acetylcholine, a neurotransmitter, and helps with neural transmission between nerves.
SSRI's: increase the level of serotonin in the body which enhances how the brain sends nerve impulses; can reduce many symptoms, but not helpful for all patients
Clonidine: centrally acting alpha-agonist that can be helpful for those with sympathetic POTS (helps reduce sympathetic activity), but is also used to treat hypertension and therefore is not for all POTSies
Benzodiazepines (klonopin): anti-anxiety medications (CNS depressants) that can help with anxiety or panic attacks; addictive and not for long term use
Desmopressin (DDAVP): enhances reabsorption of water in the kidneys by mimicking the effect of natural Anti-Diuretic Hormone, therefore can help patients increase water volume and blood pressure.
Erythropoietin (epo): stimulates the production of red blood cells, but can have many dangerous side effects and therefore is usually not given unless other therapy is not effective.
IV saline: can be helpful for some POTSies, but often must be given daily to have any significant benefit.
There are some other drugs that are helpful for POTS but are less directly related to blood volume treatments. Some of these include Proton pump inhibitors like Protonix (to reduce acid reflux, a very common disorder among POTSies), Antihistamines (many of us have allergies), Laxatives like Miralax (many of us have GI motility issues), anti-nausea medications, sleeping pills, etc.
This is not an exhaustive list by any means, just some of the most common treatments. That being said, many POTSies cannot tolerate drugs and must find non-pharmaceutical methods to help their POTS. Sometime in the future, I'll post about non-drug therapies that can be essential for living with POTS.
So what drugs do I take, you ask? Well, we're going to get super personal here, but here goes: many of us have tons of allergy problems, so for those I take Allegra (antihistamine) and Singulair (to reduce allergic rhinitis). I also have an autoimmune thyroid disorder (used to be hyperthyroidism, but now hypo after treatment) so I'm on Synthroid and Cytomel for that. For dysautonomia specifically, I am on Midodrine (to increase blood pressure), Bystolic (to decrease heart rate), Florinef (to increase water and salt retention), Celexa (SSRI to balance neurotransmitters like serotonin), Protonix (to reduce acid reflux), Orthocyclen (to balance hormonal fluctuations). For pain, I am on Tramadol (pain), Zanaflex (muscle relaxant), and Lyrica (neurologic pain). I sometimes take Ambien (sleeping pill) if I can't sleep. Recently, I was also started on Doxycycline(antibiotic) and Rifampin (antibiotic) to treat a Bartonella infection and have to stay on it for 3-8 months! Whew! That's a lot of pills, huh? I'm constantly trying to get off of them or reduce them, but since I am doing a bit better now than I was a year ago, I'm nervous to change too many things at once. And this is JUST the drugs, not the supplements yet. Those will be coming soon...
So are you jealous yet? Hey, I guess I can't complain because these drugs now allow me to stand for up to 5 minutes at a time! I know that this has been a VERY long post, but I wasn't sure how to make it short and still cover most of the meds... Again, next time I'll talk about non-drug therapies for POTS that can be just as helpful as the drugs (give me a little while to put it all together though...this research stuff takes it out of me!)
To mark my return, I thought I would talk about a new toy that I got for my birthday: the magical Vitamix. 
For those of you that do not know about the Vitamix, it is a crazy powerful blender (similar to the one from "will it blend" series on youtube) that can pulverize almost anything. I have been really trying to improve my nutrition b/c I feel better when I don't eat a lot of junk, but it can be really difficult to get proper nutrition and no processed foods when you feel terrible all of the time. I wanted the Vitamix so that I can have fruit and vegetable smoothies and soups without much effort required. So, my parents and husband pitched in to get me this mega-expensive blender for my bday! Such a great family! So far, I love it. I've been blending everything I can find and I think it will really help my nutrition. Maybe on future posts I will talk about recipes or cookbooks that I like...who knows?
Hopefully you'll be hearing from me more regularly now that I am feeling a bit better. Maybe I'll actually get to that post on drugs for POTS that I've been talking about for months and months! :) Hope everyone is feeling well!
Sometimes the pain can really get to you and you need something to take the edge off. If you don't have a heating pad that you like, then try making (or having someone make) this heating pad for you. It could be helpful for painful necks and backs or just relieving excess tension. I have not made this pad myself, but it sounds pretty easy and is probably much more attractive than an ordinary heating pad! An even quicker option would be to take an attractive and soft sock, fill as instructed below, and sew the open end closed. Hope this helps those aching muscles and joints!
I promise I will post about drugs sometime soon...things have been bumpy lately, so I haven't been able to post about it yet, but I will!
Courtesy of Martha Stewart Living, Inc
Tools and Materials
Sewing machine
Iron
Fabric (about 1/2 yard will make at least one)
Machine-sewing thread in coordinating color
Bone folder
Scissors
Dried cherry pits or buckwheat
Lavender essential oil (optional)
Heating Pad How-To
1. Fold a 20-by-14-inch piece of fabric in half lengthwise, right sides facing.
2. Sew one short side and one long side with a 1/4-inch seam allowance.
3. Fold the open end out 1/4 inch and press it.
4. Clip the corners, being careful not to cut into the seams. Turn the fabric right side out.
5. Use a bone folder to push out the corners and make them sharp.
6. Fill the bag a little less than halfway with dried cherry pits or buckwheat. If desired, the pits or buckwheat can be mixed with a few drops of lavender oil before filling.
7. Close the open end of the bag with a top stitch.
I hope everyone has had a wonderful holiday. During this time of giving, we wanted everyone to know about an important non-profit dysautonomia research fund we have founded. Many of you who have been following my blog know that I have been struggling with a disease that has disabled me and changed my husband's and my lives forever.
To give those who are just joining us on my blog a summary of what we have experienced, here's a quick recap. I have been severely ill for over 4 years. In 2004, I was an active, healthy 26 year-old emergency veterinarian. It all started with a severe cat bite that landed me in the hospital on IV antibiotics for 3 days. I then began experiencing severe dizziness, blurred vision, heart palpitations, fatigue, pain, and fainting. I was unable to drive, walk for more than very short distances, or stand for more than a few minutes without assistance. Even my memory and concentration were affected to the point where a long conversation would force me to rest for several days.
After 1½ yrs of getting progressively worse, we went to the Mayo Clinic in Minnesota where I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, which is the dysfunction of the autonomic nervous system. POTS is a chronic illness that is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. Patients experience tachycardia, constant lightheadedness, dizziness, weakness and extreme fatigue. I have never been able to go back to work and have been disabled since my illness began.
This disease has no cure and the cause is unknown. Some cases can be triggered by an illness or insult to the immune system, such as the cat bite, but it is not understood how this happens. Even treatments are only able to give some symptomatic relief, but cannot affect the disease itself.
There is very little research being done on these diseases, so Adam and I have decided that it is important to us to start a fund dedicated to increasing research devoted to dysautonomia and POTS.We have chosen to join with the UNC Medical Foundation of North Carolina, Inc. to develop a UNC-based Dysautonomia Research Fund. This fund will give yearly seed grants to early researchers looking into dysautonomia and POTS. I will be on the board that decides who will receive this yearly grant, and will ensure that the money goes to a candidate looking to further research that can assist those of us that suffer from dysautonomia.
This research could make an amazing difference in the lives of all people with dysautonomia and POTS. We feel that this program will be able to do a huge amount of good and hopefully help to fight dysautonomia and POTS. The more money we can raise, the more research we can fund. If we can raise more than $100,000, we can fund research in many institutions throughout the country. So little is known about dysautonomia and POTS, that every dollar that goes to research is essential. We have seen firsthand how life-altering POTS can be, which is why it is vital more research is done.
If you are able to donate to our Fund, please consider giving as much as you can. We know that economic times are tough right now, but our health depends on research. Thanks so much to everyone who considers giving. All donations are fully tax deductible and 100% of proceeds go to UNC research.
Have a wonderful holiday season!
How to Donate:
NOTE: **Make sure that you choose "Excellence Fund" under the drop-down menu for “Please designate my gift to.” In the “In honor of” field below that menu, write in “Butare-Smith campaign.” **(Otherwise the funds may be used for other parts of UNC Hospitals). Also note that you can donate to this fund even if you are an alumni of UNC. The “alumni” the form refers to is UNC Medical School Alumni, not UNC as a whole.
The Medical Foundation of NC
880 Martin Luther King Jr. Blvd.
Chapel Hill, NC 27514
The Medical Foundation donation site also has a complete description of each way to donate, just make sure to follow our instructions for designating the funds.
