Many of us with mast cell disease suffer from episodes of dizziness, lightheadedness and the feeling that we are going to faint (presyncope).
Some of us, myself included, do faint and a few of us, like me, sometimes have seizures or convulsions when it happens.
In my case, the unexplained fainting/seizure episodes first began at around 9 months old and stopped at about 6 years old but unfortunately they have returned in the last few years as my mast cell disease worsened. And as you can imagine, I am pretty desperate to keep these episodes from happening (!) because not only have I injured myself a few times now but it has severely impacted my ability to drive, work or leave my house without fear.
The most important objective in treating neurocardiogenic syncope is preventing injury. Falling while unconscious can result in broken bones (including skull fractures), serious internal injuries, and even death. Driving an automobile becomes dangerous if the problem is not controlled, and the impact of recurrent fainting on a person’s quality of life and their ability to work is substantial.
I had to close my business and I haven’t driven in two years. I do get out more now but not without worrying I will faint and embarrass or injure myself in public. It’s a real problem!
So what causes fainting and seizures in some MCAS patients?
It may be from the inflammation caused by the mast cell degranulation itself, which may in turn trigger dysautonomia, but how exactly does the dysautonomia cause fainting and seizures?
According to the same experts:
One of the most important jobs of the autonomic nervous system is to deal with the effects of a change in body position (posture) on the distribution of blood in our body. When we are lying down, the blood only has to travel sideways in order to get to all of our organs. However, when we stand up, gravity has a significant effect on the distribution of the blood. In fact, about one third of our blood is pulled down into the bottom half of our body away from the heart. This leaves less blood available to be pumped to the brain, and generally results in a slight drop in blood pressure. The autonomic nervous system must compensate for the change in posture. The brain senses a reduced flow of blood through the carotid arteries in the neck. These pressure receptors send signals to the brain to tell it that the blood pressure has dropped. The brain immediately sends signals out to the blood vessels in the body, getting them to constrict to increase the blood pressure and help to drive the blood upwards back towards the heart. Sometimes the autonomic nervous system malfunctions, and instead of maintaining an appropriate blood pressure there is a sudden withdrawal of sympathetic nerve activity and an increase in parasympathetic signals over the vagus nerve. This causes the blood flow to the brain to drop even further, and results in loss of consciousness due to the brain shutting down.
Heat, humidity and standing up too quickly triggers me to faint (or want to faint). Several times it was when my antihistamines wore off that I fainted. Even stress, sudden fear or the sight of blood has done it to me! Needless to say, I let the hubby deal with butchering and dressing out the chickens, ducks and turkeys we raise. 🙂
Exercise can also trigger dysautonomia and induce fainting episodes in some people:
Some patients who have neurocardiogenic syncope will have the syncope immediately after cessation of physical activity. Should that happen, advice is that they should take precautions immediately after activity. These might involve the avoidance of the standing posture and tapering off exertion rather than suddenly stopping.
But what about my seizures? Can POTS (or another form of dysautonomia) cause these, too?
They can very uncommonly develop a grand mal seizure. That is rare. Much more common is the development of a few jerking movements, and these are not regarded as being the same as epileptic seizures. The great importance in recognizing that these patients have involuntary movements secondary to syncope is that they do not need to be treated with anticonvulsants.
In my experience if I faint and am not laying perfectly flat I will have a seizure. Even having my head slightly elevated by a pony tail will trigger convulsions. Sometimes they mimic a grand mal seizure and sometimes I am just jerking a bit. I’ve had them while passed out from fainting, in my sleep and while fully conscious.
Once I was apparently both asleep and conscious when I had a seizure (?!). The nocturnal ones stopped when I got a flatter pillow, which makes sense now. According to the experts this is uncommon (fainting while resting), but it happened to me and I’m sure a few other people.
Thankfully sudden death is also uncommon (although the risk of death when you faint and injure yourself is still there).
Naturally, the question is what can we do to prevent fainting/seizures? Luckily, according to the experts, there are some pretty simple (yet effective) things we can do:
One of the most important mechanisms preventing a reduction in blood pressure when you stand up is an adequate blood volume. The most important factors of maintaining a normal blood volume that you can control are an adequate intake of salt and fluids. Patients with orthostatic intolerance are extremely sensitive to a reduced blood volume. When you eat a lot of salt, the sodium ions (from salt) are retained in your blood (plasma) and ensures a normal blood volume. The extra salt is passed in your urine. Caffeine is a drug that will raise blood pressure. Two cups of strong coffee contains about 250 mg of caffeine, a dose that is adequate to raise blood pressure in someone who has orthostatic hypotension (a fall in blood pressure on standing up). Some physicians recommend that patients with orthostatic hypotension who enjoy coffee drink two cups of coffee (not decaffeinated) before they get out of bed. It should be pointed out that some patients with POTS do not tolerate coffee. Their sympathetic nervous system can be already in overdrive and coffee can aggravate their tachycardia.
My neurologist suggested using caffeine and it definitely does help (me) a lot. I’ve also increased my salt intake (I already drink plenty of water with the cromolyn) and learned that finding the right medicines and practicing strict trigger avoidance is essential in preventing just about all of these MCAS/POTS symptoms. I haven’t had a fainting/seizure episode in several weeks now so so far, so good!!
Keeping my fingers crossed for us all.