Donate

 

 
ForumForumDiscussionsDiscussionsOn the alternat...On the alternat...Alternative Therapies - IAlternative Therapies - I'll try anything within reason!
Previous Previous
 
Next Next
New Post
 06/06/2012 10:14
 

This relates to the previous two or three posts.

First and sorry to say this but here we go; there is no cure for narcolepsy! At the moment there is nothing you can do or things you can take that can rebuild the orexin producing areas of the brain. By that I mean measuring your CSF before the trial and again after the trial and finding your orexin numbers have increased. To date it has never happened so you can't "cure" narcolepsy.

However, after saying that I do not doubt that you can do things with both traditional or alternative approaches that can improve your narcolepsy. Traditional drugs certainly help a lot of people. Alternative methods can help too but the problem with most alternative methods is that people over sell them. Just take care out there and go into all alternative therapies with your eyes wide open.

I am now reviewing some data on the enteric nervous system at the moment which might be interesting and will post again with the outcomes.

New Post
 02/07/2012 15:10
 

Hi searching4cure!

Sorry I didn't see your post. I haven't visited this forum for a while. Yes I had severe cataplexy, but haven't had it since I started the GAPS diet about 9 months ago. It's great to be able to drive again.

When I started the diet I gave up my cholesterol meds, and antidepressants which were supposed to be helping the cataplexy (they weren't much use anyway). I did not intend to give up the provigil / modafinil but after a week or so on the diet I found I couldn't sleep day or night so I stopped taking them immediately, without tapering the dose. I have to say I don't think any medical professional would recommend stopping medications so abruptly?

I did start with the Introduction diet for a couple of weeks, but probably should have stayed on it for longer. However, you can do the main diet and return to the introduction at a later stage if you wish. It's a pretty radical change from normal eating habits but as long as it works for me I'm sticking to it.

I don't really know how to advise anyone beginning this programme, except read the book thoroughly and do it!

Good luck!

New Post
 03/07/2012 08:34
 

Can I once again dampen the parade here and just say again that if you are going to try anything like this talk it through with your Consultant first and don't do what sleeper did and just stop your medication. While he was OK - I am pleased to say - you might not be and rebound cataplexy and EDS are not the best things to have.

I also have to say that I am unaware of any scientific study that backs up the claime of GAPS diets. This is not to say they have not helped people like sleeper as they quite obviously have, but they might not help you as much or at all so please be careful how you do this.

John

Previous Previous
 
Next Next
ForumForumDiscussionsDiscussionsOn the alternat...On the alternat...Alternative Therapies - IAlternative Therapies - I'll try anything within reason!

Forum terms & conditions: please read before using the forum
Minimize
The views on the online community do not represent those of Narcolepsy UK. To provide the best possible service, we keep an active interest in the topics being discussed, while making sure that the forum remains strictly for your discussions.

Your Content must:

  • be accurate where it states facts
  • be genuinely held where it states opinions
  • comply with applicable law in any country in which they are posted.

Your Content must not:

  • contain any material which is defamatory of any other person or organisation
  • contain any material which is obscene, racist, sexist or offensive in any way
  • engage in bullying on the site
  • infringe any copyright, database right or trade mark of any other person
  • be likely to deceive
  • be made in breach of any legal duty owed to a third party such as a contractual duty or a duty of confidence
  • be used as an advertisement or to promote a survey
  • be likely to disrupt our service in any way
  • give the impression that they emanate from us where this is not the case
  • advocate, promote or assist any unlawful act such as (by way of example only) copyright infringement or computer misuse.
     
Common sense & disclosure of personal information

Please use caution and common sense when using the Site. Keep your password secure and contact us if you think it might be used by someone else. We cannot guarantee in any way that other registered users of the forum are who they say they are, are always honest and acting in good faith. Any registered users who we feel might be abusing the spirit of the forum and who fail to comply with the terms and conditions above could have the privilege of using the site removed from them.

Content on this site is monitored on a daily basis. If you read a post that you find breaks any of the above regulations, press the report post button and that post will be flagged up to a moderator. We reserve the right to reject, block, suspend or remove content at any time and at our sole discretion. We in no way guarantee that your content will be displayed on the Site.

Always exercise caution on the site. Do not disclose your full name or have your user name as your full name. Do not give details of your phone numbers, email address, home address or of your workplace to any person.
 

Indemnity

You agree to compensate the charity and our respective directors, officers, employees, and applicable third parties in full from and against all third party claims, liabilities, losses and expenses (including reasonable legal fees) suffered by such persons arising out of, or related to or which may arise from Your Content and/or any breach by you of any term of this Agreement.



 

Privacy Statement   |  Terms Of Use
Copyright 2010 Narcolepsy UK (Charity Registration No: 1144342 Scottish Charity No SC043576)