These past few weeks have been quite the struggle. I have always suffered the dizzy spells associated with Orthostatic Intolerance (OI) or Postural Tachycardia Syndrome (POTS), which almost 97% of those suffering with ME/CFS have, although I had no name to put to it until recently.
Despite that, since the toxic chemical exposure, I am having more and more difficulty with these dizzy spells and unfortunately I am finding no help from the VA healthcare system. I think Sue is right when she says they are thinking hypertension, not OI/POTS. Sadly, once the VA says you don’t have something, and they have no understanding or belief in the thing that you think you have, getting the necessary testing is almost insurmountable.
I have had many days now where I lay in bed, curled up in a fetal position, trying to breathe deeply and get through the next moment of horrible dizziness. Five to six hours will pass before these bad episodes lesson enough that I am able to get upright. But even still, prone is the favored position as too much movement tends to just set off another round. This past week, I have gone down to check my mail once and it took everything I had in order to do it and not feel like I would pass out.
I’ve also noted, that wearing my mask when I’m struggling with the dizzy spells, seems to heighten them. Not that, that will make me even begin to contemplate going anywhere outside my apartment without my mask. However, it does mean that more often than not, I am finding that I am not leaving my apartment a whole lot.
Thanks to Sue, I read up on the literature for treating OI/POTS, which recommends increasing water to two plus quarts a day and increasing salt upwards of 8,000 mg a day! Of course, everyone is different, so the salt is something each of us has to take the time to listen to our body and determine what the right amount is, but as you can see, we need to add about 2-3 tsps more of salt to our diet every day. For me that is a lot because I don’t use too much salt.
For those reading my blog who have no idea what OI and POTS is, let me share this explanation with you.
POTS is characterized by rapidly increased heart beat upon standing caused by low blood flows to the heart. The symptoms found in POTS appear to arise from decreased blood flows to the brain, increased cerebrovascular resistance, and (an unexplained) hyperventilation associated with low-carbon dioxide levels.
Low blood pressure and high resting heart beat can be present. Low blood pressure (neurally mediated hypotension (NMH) is not a requirement for POTS. The only overt autonomic abnormality in POTS is increased heart beat upon standing.
POTS symptoms are manifold; they include: dizziness, light-headedness, shortness of breath upon standing, fatigue, exercise intolerance, frequent urination, headache, flu-like symptoms, tingling and/or numbness in the extremities, poor sleep, abdominal discomfort, irritable bowel syndrome, poor balance and coordination, visual disturbances (floaters), allergies and chemical sensitivities, chest pain, neurocognitive disorders, anxiety, palpitations (sound familiar?). In contrast to those people who simply experience fainting upon standing people with POTS are often disabled, and unable to attend school or hold a job. POTS effects up to a million Americans.
In a small study in 1997 Jacob et al. demonstrated that reduced blood volume was associated with low plasma renin and a trend towards low aldosterone levels in about half the patients with OI. In another very small study Streeten and Bell (1998) found CFS patients demonstrated low red blood cell (RBC) mass but not low mean plasma or blood volume levels. While mean plasma and blood volume were not significantly different from controls the range of readings was very high; a subset of CFS patients clearly did have reduced blood and/or plasma volume. Because the RBC’s carry oxygen to the tissues and organs of the body Streeten and Bell argued that low RBC mass and normal blood volume was analogous to have normal RBC mass and low blood volume. In either case insufficient oxygen was very likely reaching the brain.
occurs when peripheral (i.e. outside the CNS) nerve failure or central nerve atrophy results in rapidly reduced blood pressure (systolic and diastolic) during the TILT test.
Needless to say, in past tests (not a tilt table test for OI/POTS) that I have had to undergo on a table that tilts, I have passed out every time. I remember the technicians laughing in one particular test because every time they would tilt the table, out I would go. They finally gave up using the salts to bring me around after I passed out multiple times and did the test with the table flat.
In addition, I no longer allow the Dentist to pull my seat upright as I have been known to pass out as a result, the latest episode being this past May.
This week I started the water and salt recommendations and I thought I was noticing a difference, but I’m back to having a really bad episode today so….I think this is just one of those areas I have to keep working at it till I get it right.
I am now drinking anywhere from 12 -14 glasses of water a day which is over the 2+ quart suggestion. I am unable, however, to drink anything like Gatorade or V8 juice so my mother suggested drinking broth (bullion) which is actually a speciality drink in France. So I am going to be adding that and any thing I can get that is salty like pickles, olives, pretzels and so forth.
Besides feeling so yucky, the real downside to this dizziness is how physically limiting this is. I am pretty much tied to my bed and most definitely, until this passes, my apartment.
Which reminds me. The Fire Department is doing a fire test this Friday and our building has to be evacuated so I have to venture out for an hour or two, even if I am experiencing the dizzy spells.
So, I am coveting your thoughts and prayers for a breakthrough and to have a dizzy free day on Friday. Or at the very least throughout the period the Fire Department is completing their test.