Could LDN help with migraine of the eye and dosing of Ehlers Danlos Syndrome

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LDN Specialist Pharmacists Stephen Dickson and Michelle Moser

Could LDN help with migraine of the eye and dosing of Ehlers Danlos Syndrome

The answer is yes.  This was discussed in extreme detail.  There are lectures online on the LDN Research Trust about this and that. There's also a number of videos and quite a number of speakers.  So the answer would be absolutely and go have a look at the  LDN Research Trust website. 

To clarify she was talking about hypermobile Ehlers Danlos. Yes as Sam said and as Stephen said, move it to the morning and perhaps increase your dose and then go from there and also document it's really important to document.  Make sure that you're either keeping a list of your symptoms and how those are being resolved and it could be something as simple as maybe you have three or four symptoms and you could even rate them zero, one, two or three.  None, mild, moderate, severe.  It doesn't have to be extensive journaling around your symptoms but please document how things are progressing over time and even making those notations a week apart sometimes is enough because that information can not only be very helpful for your provider to help navigate how to treat you but also if you have questions for your pharmacist.  They're going to ask those questions over and over again.  So if you don't have such a document or you're not really sure how to navigate that get a hold of one of us.  Many of us have handouts that we can send electronically or that we can actually physically give you paper or just give you an idea as to how to document that and then a lot of times this information can be captured because I believe the trust is working on another process by which we can actually capture patient data and then based on disease state and symptom resolution and dosing and how that is going to be effective and we can compile that as well.  If either of you would like we might digitize the wh o breath quality of life questionnaire.  We've been using that for a number of months and emailing it to patients after a week, four weeks, three months, six months.  In a year we haven't got to that yet but if any of you want a copy of that to try it it seems to be based or standardized. 

 We're hoping a statistician could have a go at it maybe in two years time.  And we've got some data and we've actually found some online programs that are very helpful as well in that we can after a certain period of time send out an electronic survey to whatever patients and those those questions are detailed based on the disease state that or the medication that was originally prescribed and that information is all confidential very HIPAA compliant but very helpful in answering a lot of questions as they crop up because as we well know as pharmacists we're very easily accessible and a lot of times the questions come to us before they go back to their providers but yet that information can then be bridged and given back to the providers so that we can make sure that the focus is on the patient and the resolution of their issues.