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handsfullParticipant
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.
handsfullParticipantWe 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.
handsfullParticipantThank 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.
handsfullParticipantWe 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?
handsfullParticipantMy son who has been diagnosed had CT scan and X-rays at an ER, along with blood work. They were looking for pulmonary embolism or aneurysm that could be life threatening. All tests were normal. They said it was vertigo, which we knew was wrong. His vision starts to go when he feels the onset of a syncope episode from POTS and he describes it more like a floor moving in waves rather than a spinning sensation. He had a video EEG/ECG that was relatively normal, but did show signs of tachycardia during episodes. At the onset of an episode, he feels tingling/numbness in his legs, nausea, difficulty breathing, extreme pain in his head (from blood vessel constriction trying to maintain BP), vision disturbances, more severe brain fog. His only fix is to lie down with feet elevated to restore blood flow and BP to his head.
When not having an episode, he has pain in his neck, lower back pain, constant headache (for 2 months now) across the front of his forehead and back to about the rear of his temples, weakness in muscles, difficulty feeling like he can take very big breaths, brain fog, constant fatigue even after sleep, insomnia. His first episode was in flight coming home from a vacation and he passed out completely. Now he has the exact same symptoms every few hours but only when awake. It can even happen when already lying down.
I don’t know if your symptoms mimic typical POTS symptoms, but I’d recommend a thorough examination by a GP or neurologist. Cardiologists can also test for POTS and treat the condition. There’s a lot of information about POTS online, but there are also conditions with similar symptoms that require significantly different treatment methods. You need to be sure what’s wrong before treating.
handsfullParticipantWe 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.
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