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Hi. I have this pooling in my hands, feet, upper arms and boobs. It came on at the same time as POTS and peripheral neuropathy. I also have EDS and was diagnosed years ago with ME/CFS.
Yes, I’m taking the VNS Soothing Digestive Aid.
Yes, I started to take them soon after I stopped the Parasym. I’m waiting to see if it helps me. I think I’m just about covered for everything else.
What do you think it helps with? Sometimes results are subtle, aren’t they?
Thanks for your reply.
I suffer from reactions to many foods, drugs and supplements both orally and transdermaly. This began over 40 years ago when I first became sick with chronic fatigue and headaches. Although I have reversed many of the symptoms of my condition I still am highly reactive. My reactions begin within 5 minutes of ingesting something and cause elevated muscle tension and pain around the back of my head, jaw, neck and into the middle of my spin. I feel tired and agitated and am not able to sleep well. (My sleep is usually disturbed but much more so after a reaction). I have slightly elevated levels of tryptase (enough to diagnose me with mast cell activation) however the levels are equally high whether I am feeling well and relaxed or if I am in a reaction.) I was very encouraged when I read Dr. Driscoll’s interview at the Low Histamine Chef website because it made sense to me that the vagus nerve may be involved in my reactions. However I had a bad reaction/agitation to Parasym. Since there are multiple ingredients in the supplement I am wondering if I should just try taking choline. My condition has been interrupted many times when I have tried a new therapy or supplement i.e. quercetin, acupuncture, static and specific frequency micro current modalities, stimulating the vagus nerve by gagging and gargling, etc. however I quickly habituated to all of these interventions, which then aggravated my nervous system. I suspect that I have some sort of connective tissue disorder as I have an elongated tongue and colon and low blood pressure and a slow pulse when resting. I am looking for advice on how to stop my reactivity.
I can identify with much of your post. I have had numerous issues with foods and drugs over the years. I have EDS but very late diagnosis in my 50s. I was diagnosed with ME/CFS 8 years after EBV and I was left with autonomic dysfunction. I now have POTS and neuropathy.
I started to look into MCAS last year and I haven’t pursued a diagnosis as I think it’s doubtful it will happen. I am on the low histamine/anti-inflammatory diet now and taking supplements. I am taking the three vagus nerve support capsules, but noted the Parasym Plus upset me and it wasn’t until I saw it had Acetyl-l-carnitine ingredient that the penny dropped, as I have had issues with this supplement before. I know that over stimulation of my nervous system is a no-no and no longer even use a neurostim as it aggravates everything.
I would suggest following the diet, but not too much nerve stimulation at once. My gut reacts so much to anything and the neuropathy then gets 10x worse. It is improving slowly and avoiding foods that make matters much worse. I wish you luck!
I was wondering which antihistamines to go for? Which H1 and H2 are the best, bearing in mind I wouldn’t get referred to see anyone to prescribe these. I am also on Nortriptyline which I believe is an Antihistamine.
I really don’t know what else to do for myself.
I noted that the Parasym Plus has Acetyl L Carnitine in it, I have felt unwell in the past when taking this in conjunction with Alpha Lipoic Acid. It makes me feel sicklier with malaise, bad taste in mouthing generally well under par. I wonder why this is?February 14, 2016 at 2:26 pm in reply to: Can I get something similar to Diamox over-the-counter in UK? #5859
Two things spring to mind that might help in view of your head pressure and constipation, use the search box above and check out posts on:-
2). B Vitamins and Folic Acid
Many thanks. I already take these supplements. I am going to route that you have suggested.
TrishFebruary 14, 2016 at 2:24 pm in reply to: Can I get something similar to Diamox over-the-counter in UK? #5858
Hi Trishy, Sadly, no OTC’s are effective at reducing pressure. I WISH we had more options. Sometimes Lasix helps a bit (usually given in conjunction with Diamox), but it is not as effective. We need more options.
Many thanks for your reply. I guess I will have to push to see if I can get any help.
TrishFebruary 12, 2016 at 6:13 am in reply to: Can I get something similar to Diamox over-the-counter in UK? #5855
Many thanks for your very comprehensive reply. I am due to see my optometrist next month, so I shall ask about the ‘fundus’ information and any copies. I am happy to see that there is at least one neuro-ophthalmologist at my local hospital, so I have a better chance of getting referred there if my doctor is willing to do this for me.
I know when my bowel is at its most painful with constipation/gas/food intolerance, then my head, face and eyes seem to to be the most painful. This also applies to my neuropathic pain becoming far worse.
At least this gives me more of a fighting chance to get something being looked at and possibly treated.
Thank you again
I think the side effects may have been from me taking too much too soon. I was very eager to get the benefits, and on the first day when I noticed that two had helped, I took three later that same day. I think this led to a possible overdose? I’m not really sure, but either way, I’m going to stop taking it for a few days and see if my side effects go away
On a different forum I read that many people experience muscle soreness and drowsiness when they combine these choline supplements, so I’m going to attribute it to that. Also, I have made an appointment to have my kidneys checked out as I’m still worried about that. If you can learn anything from me, I would suggest starting slow, 1 per day, or 2 max, and see how you feel from there
I’m not sure if I have the same problems as you however. I definitely don’t have EDS, in fact I would say I am the opposite of hyper mobile, and my POTS is not the hyperadrenergic kind that is typically associated with mast cell disorders. Like you I haven’t been clinically diagnosed with Mcas or Histamine intolerance. I assume I have it as their really isn’t anything else that would cause me to flush bright red all of the time
Anyways, good luck with your treatment, and if you notice any problems post back here so we can compare notes
Hello. I think I will take one to see if I can tolerate the PP. I was originally diagnosed with ME/CFS many years ago and it wasn’t until this last couple of years that I have the diagnoses of EDS and POTS. It’s taken decades to get there. I think the EDS link is paramount for me. I wasn’t aware I had it as I haven’t had regular dislocations etc. My cardio thinks my POTS is linked to CFS and deconditioning, but I don’t see that as I was very active prior to POTS developing. I think the CFS is part of the whole condition and came on after EBV. I flush red and have lots of food and drug sensitivities. My GI plays up and my whole body suffers.
Good luck with your trial and I will update when mine comes from the US.
Hello Dr Driscoll.
Many thanks for your reply. I’m not really sure what would be the best course of treatment to aim for. I do believe that I have histamine/MCAS issues, with plenty of food and drug sensitivities. I have EDS, POTS, fairly strong autonomic dysfunction, IBS, gastroparesis, pressure in my head and eye issues (inc possible glaucoma). I don’t think my doctor will be of help it took so long to get diagnoses of EDS and POTS (54 and 55 years!). What can I take to help me? I am currently taking Quercetin and Mangosteen. I have ordered Parasym Plus and the digestive aids.
My cognitive function is getting far worse and I think chiropractor triggered the worst of the POTS symptoms back 4 years ago. I have a buffalo hump on my cervical spine (my head is pushed forward) and I wonder if that is implicated. Sometimes I feel like I have dementia, as my memory and concentration are really deteriorating.
I also have whole body neuropathic pain, which is intense burning.
Thanking you for your time and dedication.
Let me first of all say that I have just sent for some PP, so I’ve yet to try it. I have EDS, ME/CFS, POTS and whole body neuropathic pain(which is related to these conditions and is not idiopathic) and possibly MCAS and or HI. I am having such a rotten time at the moment with GI issues and food/drug sensitivities, that I had to do something as my doctors are pretty clueless.
I tried the H1 and H2 meds to trial for two weeks to see if I have MCAS/HI and after four days have been so ill, I had to stop. I feel so sick and fluey and my GI is going nuts. I will be trying the PP very soon and I hope it works for you and me. Hopefully someone will be able to advise, as obviously I cannot, but your diagnoses sort of clicked with me!
Good luck and I hope in the longer term you find some relief.
Thank you very much. I’ve managed to order. Much obliged.
Hello. I am in the UK and I wanted to buy the Parasym Plus and the other two digestive aids but unfortunately they cannot be posted to me over here. Is there any other way I can purchase these supplements? Many thanks.