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My son is 17, recently diagnosed with POTS by his pediatric neurologist. He has been suffering from constant headache, neck pain, lower back pain, and when episodes strike (about every 3-4 hours while awake) he feels numbness or tingling in his legs, nausea, extreme pain in his head, and has to immediately lie down to restore blood flow to his head. The first event was aboard an aircraft and he went completely white and his lips turned blue before he completely passed out in a seated position. Since then, his symptoms have persisted and are the same each time.
He had his BP measured lying, sitting, standing, then transitioning between those positions repeatedly after 15 minutes of rest intervals between. His BP does not remain steady and actually declines somewhat when moving to a standing position. It drops approximately 10 points systolic and diastolic. His episodes, however, can even happen when lying down but awake. Only in his sleep do they not occur.
He has had clear X-Rays, CT scan, MRI of his brain, and blood work. They did not measure vitamin levels, which I will request at our next appointment. He is basically unable to leave the house and confines himself to his bedroom most of the time. He is being taught at home by a county program since he graduates this year. He was to attend college, but may have to go online instead.
What dosage should someone who has his symptoms begin with and take each day? The bottle of Parasym Plus states 2-3 per day, but when beginning the supplements I’m not sure if he needs higher doses, nor do I know how to spread them out. Any help or suggestion is appreciated.
By the way, his neurologist is highly supportive of us trying to Parasym Plus and other things before medication. She had him on Nortriptyline and he had horrible side effects (thoughts of suicide), which are now gone since we stopped the meds. She’s not a fan of medication and encourages us to try more natural products first. He’s on heavy fluids of about 1.5 gallons per day water and Gatorade, no caffeine, no sugary drinks besides the Gatorade. He’s eating a lot of vegetables and eggs (for choline).
We started him yesterday on two Parasym Plus capsules at mid-day, then another two before his late evening dinner. He had felt fine all evening, but today he woke with what he described as feeling like a headache you would have after hitting your head on something pretty hard. It’s in the back of his head, which has had no pain or symptom during this experience with POTS. I am assuming it’s the Parasym Plus, so we today had him take only two this morning (before we knew about the pain in his head). We will not have him take any additional capsules and see how the headache reacts. It could be coincidence and he’s a migraine sufferer for several years, but they are not ever in the back of his head. My plan is tomorrow to add one more capsule later in the day besides the two in the morning to see how his body reacts, but only if his headache in the back of his head has subsided. If not, we’ll stop the Parasym Plus completely until it’s gone, then try one more time to see if he has the same reaction. I just need to be able to rule choline in or out as a treatment for him.
Would anyone recommend Alpha GPC alone if he continues to have discomfort from the Parasym Plus? I am unsure if the other ingredients could be contributing to the headache or if it’s the A-GPC itself (if it’s the pills and not a coincidence). Or would we be better off going with a different treatment strategy altogether?
One final question for the forum. Has anyone who suffers from POTS found comfort and benefit from magnesium supplementation? I know it can have a hypotensive effect and he’s suffering from syncope episodes due to his POTS symptoms so I don’t want to introduce something that could cause further harm or more frequent episodes.
We reintroduced Parasym Plus at a lower dosage (1 morning, 1 evening), now working up to 2 per dosage 3x daily. He’s fine and has no headache in the back of his head so it could have been coincidence.
Anyone know how long Parasym Plus normally has an impact on people with POTS if it works for some of their symptoms?
I’ve been following along with your posts about your son. Haven’t been able to get into the forum with my regular password and actually had to redo my registration under another name and email address to get back on???
Anyway, I’m rooting for your son and hoping Parasym Plus helps him. I’m not sure why you haven’t received a response from anyone on the forum. Maybe because they’re getting better and living life again! At least I hope so. I have recently purchased this supplement but haven’t started it yet do to a number of reasons. Hopeful to start next week.
Will you keep us updated on your son. Always hate to hear about young people dealing with this atrocious medical condition. As a mama bear I can’t imagine how it has impacted your entire life but please know your in my thoughts and prayers.
Best regards.
Thank you Terriann2! I kinda figured not many people use the forum right now, but I’m happy to hear you’ll be trying Parasym Plus, too. We haven’t seen any changes in him, or so I thought. We bought him a new mattress because his sunk in the center (3 years old and not a cheap brand or model!). His new one is memory foam and he has finally gotten rest. It may be coincidental or it could be that the Parasym Plus contributed to help that change. I’m hopeful that’s a sign the PP is working, but impossible to know since the mattress is new and helps him stay cooler during sleep. His feet tend to stay very hot while his legs are not, but it’s enough to keep him awake and the insomnia is pretty rough on him. The past 2 nights since we got the mattress (and since getting him back on the PP), his sleep has improved. Either way, I’m keeping with the PP and happy he can rest better now.
Take care and good luck on the PP. Curious to hear how it goes for you.
We were asked to stop the Parasym Plus today based on another diagnosis of vestibular migraine with mild POTS. Instead of taking the PP, he was prescribed a calcium channel blocker. He can’t take CTA’s or SSRI’s due to thoughts of suicide brought on by the medication, so she’s starting him on the calcium channel blocker. We’ll see how it goes. So far he slept better on two occasions on the PP, but he also has a new mattress so we aren’t sure which helped the sleep, unfortunately.
What lead the doctor to this diagnosis? Is he suffering from debilitating headaches? I sure hope the CCB’s help him get some rest and get back to living a quality of life you both deserve for him to have. Keep us updated.
He has suffered, like me, from migraines much of his life. This was all new, though. He suffers from excruciating pain in his head when one of his episodes strikes, and they strike daily about 4 times with a duration around 5-6 minutes. There are other symptoms, such as weakness in his legs, nausea, dizziness. She eliminated the possibility of Menieres Disease because his hearing was tested at 100% and Minieres symptoms are identical to vestibular migraine, except for Minieres also includes loss of hearing. He had all the blood work done yesterday, sleep study is scheduled, urine is being collected for 24 hours, and he’s taking the calcium channel blocker. She had to diagnose based on symptoms since she’s already run MRI on his brain, CT scan, video EEG/ECG, holter monitor, and basic blood tests. He had all but one or two symptoms of vestibular migraine and fit the criteria for it.
All of the salt and fluids had no impact at all on his symptoms and she is convinced his POTS is mild enough it should have resolved with the amount of weight gain and water he is holding. She’s now concerned with thyroid since he gained weight so fast, regardless of the retained fluid. Thyroid issues are prevalent in one side of the family but we need the results of the blood work to know.
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