Hi everyone! It’s been a while since I’ve done a more informational post and I think it’s about time. Given the progress I have made, I am always looking to share my discoveries with all of you in the hope that you might have a similar symptom and could benefit from my experience. As the title suggests, the topics I want to discuss today are low blood volume, POTS (Postural Orthostatic Tachycardia Syndrome), and NMH (neurally Mediated Hypotension).
Orthostatic intolerance is the presence of symptoms such as lightheadedness or dizziness while standing or sitting upright and has been associated with CFS in both adults and children. There are many type of orthostatic intolerance but the primary types associated with CFS patients are POTS and NMH. POTS is classified as a rapid increase in heart rate (pulse) of more than 30 beats per minute (bpm) above normal, or to more than 120 bpm total, during the first 10 minutes of standing. Sometimes POTS can have a delayed form meaning that heart rate and blood pressure changes don’t develop for many minutes after standing. NMH is an abrupt drop (at least 20-25 mm Hg) in systolic blood pressure when standing. The blood pressure drop is accompanied or preceded by an increase in symptoms. POTS and NMH can be experienced alone or together. Overall, individuals with orthostatic intolerance experience dizziness, lightheadedness, momentary loss of vision, and sometimes loss of balance and fainting upon changing positions.
I suffer from both NMH and POTS but physicians tend to classify my condition under the label POTS as I will from now on. For about 3 months, my dizziness would strike with such intensity that I had to rent a wheelchair so that no matter where I was I would have a place to sit down and pass out. POTS made it hard for me to leave the house and significantly increased my brain fog, fatigue, and pain level. It also landed me in the hospital twice where I was tested from head to toe with no results. Without treatment for my POTS I have no doubt that I would be fully bedridden.
So what causes POTS to occur? Most physicians agree that POTS stems from inadequate blood circulation that reduces the amount of blood getting back to the heart and brain. Patients may have low blood volume throughout the body or their blood may pool excessively in the extremities. As a result, patients with POTS experience more pooling and reduced brain blood flow than normal while standing. When blood volume is low in the heart as during pooling, the brain releases chemicals that alter the pulse and blood pressure in an effort to get the blood flowing upwards again. When this chemical response occurs, patients can develop low blood pressure (hypotension), a rapid heart rate (tachycardia), and orthostatic symptoms like dizziness and sweating.
What can you do to test for POTS? (Yes there is an actual test that provides evidence for POTS!) Many patients are given a tilt table test to evaluate for POTS. However, due to the possibility of a delayed response, this test is not always accurate. In this case, a second lesser-known test called a blood volume test can be used. The blood volume test calculates the total amount of blood in the body, which is often low for CFS patients with POTS. Both tests are non-invasive and very worthwhile if you are struggling with any of the symptoms I have described.
Why was it so hard for me to get a diagnosis of POTS? As it turns out, I was diagnosed with POTS when I was first diagnosed with CFS and fibromyalgia back in 2003 but the only treatment offered to me was increased hydration and salt intake. In addition, I was very out of shape due to being bedridden; therefore, the POTS reversed itself as I resumed my normal activities. The first symptom to return with my most recent major flare up was the POTS and this time it was much more severe and could not be cured with simple measures. Also, my POTS took on the appearance of a neurological condition because it caused me to faint and tremble in a seizure-like manner. Therefore, my hospital trips were evaluated from a neurological perspective with a spinal tap and MRI that both came back negative and failed to explain what was really wrong.
What’s the treatment? Like all things chronic, POTS cannot be fully cured, but it can be well managed with medications and therapies. Personally, I use a combination of beta-blockers and the drug Midodrine. The beta blockers help regulate my blood pressure while the Midodrine (aka Proamatine) constricts the blood vessels in my arms and legs to keep blood where it is most needed, in the head and abdomen. In addition, I drink a lot of water, salt my food when possible, and wear support hosiery for hard days. As I am getting in better shape my POTS is also improving. My protocol might not be right for everyone and my suggestions are only to be taken as a patient. As if it isn’t already obvious, I am not a doctor!
If you have any further questions you know where to find me! Also feel free to e-mail me at cfsadayinthelife.com if you would like your message to be confidential.
http://www.cfids.org/archives/2000/2000-4-article01.asp “Feeling Faint? What You Need to Know about Orthostatic Intolerance and CFIDS”
http://www.cfids.org/cfidslink/2009/070105.asp “Top 10 Tips to Manage Orthostatic Intolerance On Your Own”
http://www.cfids.org/cfidslink/2009/070104.asp “Medications Used to Treat Orthostatic Intolerance”
http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx “What You Need to Know About the Blood Volume Test”