8 replies to this topic

[princy]

Hello all. I have not posted on these boards since I was diagnosed but I often lurk about and read up and what everyone is going through. I'm a 27 year old who was diagnosed five years ago with narcolepsy. Back then it was a relief because the cataplexy started the summer after high school and I tried to hide it from everyone I knew because I was sure I had a brain tumor or was otherwise very sick. Looking back on it now at least if it were a tumor I could have attempted to have it removed.....

Anyway, due to the economy I lost my job approximately six months ago and my health insurance with it because I could not afford the $500/month COBRA. The cataplexy and the HH has picked up somewhat drastically these past couple of months and I cannot stand it any more. I was wondering if anyone had ever been able to put together any sort of "organic" symptom remedy in the form of vitamins or something else. I occasionally take a Vitamin C here and there for a pick me up and when the HH is really bad I take some Melatonin to put me straight to sleep which helps skip what I describe as 'torture'.

My HH usually consists of seeing figures in my room, hearing voices, and feeling people trying to pull me out of my bed. I think I'm screaming for help but I never am because I'm paralyzed so no one can hear me. I can't stand it any more and I fear that as it continues it may just end up driving me insane for real.

If anyone has any suggestions I would greatly appreciate them! Thanks and best of luck to everyone.

[clarity-karen]

I have been tablet free for the last 3 months. For the first time in 21 years I am free from medication.
I have clarity, the cloud has been lifted. I am only sleeping once a day. My cataplexy is minimal and I feel energised and positive about myself and not controlled by a controlled drug.
How?
CHANGING MY DIET is what has changed my life. When I used to get sleepy or upon waking I would crave carbs like bread or sugar I looked into foods that could give me energy rather than ones that would give me a pick up but a big dive down. I came across people that eat only Raw Food. The more you tube videos I watched the more sense it seemed to make. For me, what I put into my body (especially being narcoleptic) makes a massive difference to my energy levels.
I haven't changed to a totally raw diet but I feel much better eating 50 to about 70% raw food.
I did invest in a juicer which is amazing as it gets a large quantity of greens and fruit into you without taking much processing. Obviously if you are on a tight budget then you could make smoothies with a hand blender and these are as good. this morning I had a juice that consisted of a large handful of spinach (best if grown yourself and cheaper)
3 apples, 2 carrots and a wedge of cucumber along with wild greens (free).
For the first 8 weeks I cut out wheat, sugar, chocolate, sweets, potatoes, pasta, meat, dairy.
This may seem extreme but it was the lengths I was willing to go if there was a chance to be free from drugs. I am still not eating wheat but do have the occasional rye bread,
I'm also not eating meat, pasta, sweets, biscuits etc.
I have been using something called Maca Powder which also picks me up.
Vitamin B12 is ment to give people an energy boost (I'm just about to try it).
This is the very early stages of a journey for me but I feel like I'm finally on the right track.
You could just try it for a couple of weeks and see if it helps you in any way.
Let me know what you think, all the best and if you do want any more info I'll be more than happy to help
Karen x

Hello all. I have not posted on these boards since I was diagnosed but I often lurk about and read up and what everyone is going through. I'm a 27 year old who was diagnosed five years ago with narcolepsy. Back then it was a relief because the cataplexy started the summer after high school and I tried to hide it from everyone I knew because I was sure I had a brain tumor or was otherwise very sick. Looking back on it now at least if it were a tumor I could have attempted to have it removed.....

Anyway, due to the economy I lost my job approximately six months ago and my health insurance with it because I could not afford the $500/month COBRA. The cataplexy and the HH has picked up somewhat drastically these past couple of months and I cannot stand it any more. I was wondering if anyone had ever been able to put together any sort of "organic" symptom remedy in the form of vitamins or something else. I occasionally take a Vitamin C here and there for a pick me up and when the HH is really bad I take some Melatonin to put me straight to sleep which helps skip what I describe as 'torture'.

My HH usually consists of seeing figures in my room, hearing voices, and feeling people trying to pull me out of my bed. I think I'm screaming for help but I never am because I'm paralyzed so no one can hear me. I can't stand it any more and I fear that as it continues it may just end up driving me insane for real.

If anyone has any suggestions I would greatly appreciate them! Thanks and best of luck to everyone.

[clarity-karen]

And about your dreams dont despair. If they are at tall reoccurring then you can actually take control and change them for the better. I only found this out when I was about 29 and I had got to the stage where I dreaded going to sleep. Then my specialist told me how to turn the nightmare around.
I would hear someone coming up the stairs and step onto my bed unable to move or scream he would climb on top of me and I would see his knife then I would feel it in me, repeatedly stabbing me, I then felt the energy draining from my body and my warm blood surrounding me and well you get the picture.
My specialist said when he comes into your room and sits on top of you rather than seeing a knife think that he has come to bring you something nice, so I decided flowers. He told me to replay the dream the way I wanted it to go in my conscious awake state and just before falling asleep. Within 3 days of doing this suddenly the man that had been haunting me for so long brought me flowers and then I was in control.
I then went on to research more about lucid dreaming something so many people wished they could do and we do so easily. Hope that helps
Karen x

[LauraL]

I know this isn't really what you're asking for, but have you looked into whether the drug manufacturers of the medications you are prescribed have programs to assist those without prescription drug coverage? I would just search for the official web page of the medication and see if there's a link for "patient assistance." Cephalon, the makers of Nuvigil, has a program:

http://www.cephalon....foundation.html

It's probably also worth searching for free clinic programs in your area, so you can see a nurse or doctor. There are government-run programs (often at the county level, by the county health department) and also private programs. My family didn't have insurance when I was growing up, so most of my medical care came from the county health clinic.

Like I said, not what you were asking for, but if you did want to continue "traditional" medical treatment, there are ways to work around the financial constraints.

[clarity-karen]

Hi,
I have been doing a bit of research on Narcolepsy and the foods we eat and came across this link that should kick start you into at least thinking about cutting gluten from your diet.
http://redtailblogge...ypothesis.html. People with narcolepsy have had great effects from it.
Good luck, keep us updated.
Karen x

[clarity-karen]

Oh the link doesn't seem to work, if you type in your search engine
Could Narcolepsy be caused by gluten? you can click on the appropriate site.

[Since1967]

Some of the tricyclics used for narcolepsy are on Walgreens generic list which makes them comparable to vitamins in cost. (Yes, you would need an Rx for any of them.)

[Since1967]

If anyone has any suggestions I would greatly appreciate them! Thanks and best of luck to everyone.

You could try Chlor-trimeton over-the-counter allergy pills available at any drugstore or at Amazon.com. Seriously. Take it as directed on the package (for your allergies) and observe whether it has the side-effect of controlling HH which it may since it may be an SSNRI in disguise.

It may be considered a "selective serotonin and noradrenaline reuptake inhibitor (SSNRI) and be compared with new drugs, such as venlafaxine." according to this article: http://www.medical-h...0647-X/abstract

"Therefore, this SSRI is now over 50 years old. If chlorpheniramine had been tested in depression in the nineteen seventies, it is probable that a safe, inexpensive SSRI drug could have been used some 15 years earlier than fluoxetine – which became available in 1987. Chlorpheniramine might have been the first safe, non-cardiotoxic and well-tolerated antidepressant. Billions of dollars in the development and marketing costs would have been saved, and the suffering of millions of patients alleviated."

Keep in mind that our system of health care incentivizes discovery of new drugs for old diseases, but not new uses for old, cheap, safe drugs. There is really no incentive for anyone to spend big bucks to do double-blind studies to prove that an OTC drug has a new use since people can buy it OTC. There is no money to be made discovering new uses for OTC or generic Rx drugs.

Of course, if possible, see a doc and get an Rx for an applicable med or inexpensive generic tricyclic.

[sandygears]

Your willpower is amazing! I too found a great difference cutting out sugars and refined flours but I have yet to try this drasticness. I guess because not eating anything makes me sleepy also. How did you decide to do this?

I have been tablet free for the last 3 months. For the first time in 21 years I am free from medication.
I have clarity, the cloud has been lifted. I am only sleeping once a day. My cataplexy is minimal and I feel energised and positive about myself and not controlled by a controlled drug.
How?
CHANGING MY DIET is what has changed my life. When I used to get sleepy or upon waking I would crave carbs like bread or sugar I looked into foods that could give me energy rather than ones that would give me a pick up but a big dive down. I came across people that eat only Raw Food. The more you tube videos I watched the more sense it seemed to make. For me, what I put into my body (especially being narcoleptic) makes a massive difference to my energy levels.
I haven't changed to a totally raw diet but I feel much better eating 50 to about 70% raw food.
I did invest in a juicer which is amazing as it gets a large quantity of greens and fruit into you without taking much processing. Obviously if you are on a tight budget then you could make smoothies with a hand blender and these are as good. this morning I had a juice that consisted of a large handful of spinach (best if grown yourself and cheaper)
3 apples, 2 carrots and a wedge of cucumber along with wild greens (free).
For the first 8 weeks I cut out wheat, sugar, chocolate, sweets, potatoes, pasta, meat, dairy.
This may seem extreme but it was the lengths I was willing to go if there was a chance to be free from drugs. I am still not eating wheat but do have the occasional rye bread,
I'm also not eating meat, pasta, sweets, biscuits etc.
I have been using something called Maca Powder which also picks me up.
Vitamin B12 is ment to give people an energy boost (I'm just about to try it).
This is the very early stages of a journey for me but I feel like I'm finally on the right track.
You could just try it for a couple of weeks and see if it helps you in any way.
Let me know what you think, all the best and if you do want any more info I'll be more than happy to help
Karen x