cbmesu

29 Yrs Old Newly Diagnosed, Thrilled To Finally Have An Answer And Scared Of The Treatments...please Advise

8 posts in this topic

Hello, I'm hoping to find some answers here. I'm 29 and have struggled with

EDS my whole life. I have seen a million doctors and they always said it’s

because I had Lyme disease or its anxiety or depression. Well who wouldn’t be

depressed if it was a struggle to get through the day? It was hard to get

through college but I did. I'm very ambitious but so many times I think of all

the things I want and need to do and sleeping always comes first. I'm 29 and

feel like I'm 100. Well finally I received an answer I have Narcolepsy with

cataplexy. I was in tears when I found out because I finally have an answer and

I feel a little less crazy. But I have not noticed many people who are really

being helped by these medications. As great as it is to have an answer I would

rather feel better. I already take Adderall XR 30mg daily and I have taken Provigil

in the past. It gets me through the day but I can still easily fall asleep. I

will be started Xyrem in a few weeks and I'm praying this is my answer! I'm

also going back to acupuncture for the chance that might help. There’s no

support groups in my area and what I'm really asking for is advice! Please is

there anything natural I can take or any life style changes that should I make.

Thanks for taking the time to read this.

Carrie

 

Share this post


Link to post
Share on other sites

Good luck with the Xyrem, some say it helps. 

Haven't tried it myself, as other health matters (breathing related) I have may or could be problematic along with...

What I have tried, medicine wise has not helped me, in my experience; except in critical situations/circumstances, and that is aside from N w/ C. 

I am not saying they can't, nor don't, work for some and/or many...

Lifestyle is what it all comes down to for me, being as best that I can be; living stress/anxiety free, is the hugest factor and, is extremely difficult to reach and/or maintain (financial stresses are literally like a plague, as stress is related to that more than survival for most living, today).

It's all day to day for me.  16 oz of Coffee each morning, fruit smoothies in the afternoons, Vit D, Fish Oil, and cooking gluten-free plus mostly dairy-free; gets me by.

I feel food is medicine, or can be (this is scary, but I have no idea what it is:  http://www.fda.gov/food/foodsafety/product-specificinformation/medicalfoods/default.htm).

Lots of cinnamon, cocoa, turmeric along with other indian spices, mushrooms of all types (the more rare, the more medicinal), lots of kale and greens, himalayan salt and honey (rather than refined or other sugars), lots of herbs and vegetables, minimal to moderate meat consumption...

I have found Acupunture helps me; perhaps with a lot of the arthritis and allergy matters which does contribute to the overall system/body condition.

And, for the most part, I'm a hermit and best friends with my screen/s... =/

Not sure this at all, helps you, or scares you.  Hopefully, perhaps it helps somehow.

The best of luck.

Share this post


Link to post
Share on other sites

Carrie,

 

I cryed when I read your post. I can so rember feeling the way you do. The dr told me that I was going to feel so much better. The day time meds did not work. The Xyrem helps the Cataplexy not the EDS. I have totaly changed my life. No more work, nape every 2 hours. My self esteam is in the crapper. I cant aford my basic needs. Do I feel better, I dont know. I can say that the naps help with the hallucinations. Im not scarde any more. No Cataplexy, no hallucinations, still tired I guess that is better.

 

Heather

Share this post


Link to post
Share on other sites

Thank you guys for taking the time to reply. Many of my friends and family are not happy I will be taking the XYREM but they dont understand my daily struggle. In all honesty if every day was a struggle for them you think they wouldnt jump to the first option that might change your life. I have no problems taking vitamins and herbs and I have wanted to switch to a gluten free diet and a LGI diet for awhile. I just need to actually do it and everything seems like a damn project. I just restarted acupunture today and he believes that it can really help me. Sometimes I think I just need a few weeks off work to get my stuff in order but I cant imagine not working. I love what I do and I worked so hard to get where I am. I guess in a way I just wish there was an easy answer, one med that is guarenteed to work. I just thought it would alsway be better if I knew what was wrong with me but I dont feel much hope yet. It really helps to see other people out there that go through the same struggles as me. For awhile I thought I was alone.

Share this post


Link to post
Share on other sites

Narcolepsy is so different from one person to the next. I am active duty Navy, and have been suffering for at least 10 years while managing to somehow keep my head above the water. I never get a break. It's amazing I haven't fallen asleep at the wheel or something else.

 

My sleep deprivation has led to other chronic pain issues due to poor healing that I am just now getting under control. Thanks to a great PCM, and a great sleep doc I am finally getting this N under some kind of control as well. I started with Ritalin with my first, crappy, sleep doc. I'm taking Provigil now, but I'm waiting for a prior authorization for Nuvigil.

 

I live an active lifestyle, and eat a healthy diet. 

Share this post


Link to post
Share on other sites

I have not been officially diagnosed, but have suffered for 12 years.  I am not longer working because of it.  FINALLY I found a doctor who stated he is 99% positive I have it.  Who knows what the outcome will be but for now I am SO happy there is a path to go down.  I was at the end of the line-seeing a neurologist for possible MS, because everything else was negative.

 

I started Vyvanse and Dex about 2 months ago for ADHD (probably more of a symptom due to my sleep issues then anything.) I find these meds helpful, but quickly result in a tolerance.

 

Have you thought about using a NMDA antagonist to help control tolerance?  For 2 months all I have done is research my ADHD and the medication.  My doctor will prescribe it sometimes and my best friend is a doctor who also has ADHD and supplements his medicine with it.  He went down in his Adderall usage and has been dong it for over 3 years.  Right now there a clinical trials of Memantine being used to treat Depression in the US.  

 

Just a though-surprised more people have not talked about it.  In the ADHD world it's one of the most talked about topics!

Share this post


Link to post
Share on other sites

Hi Carrie I have posted in the treatment section so you can read it there but I have successfully treated two cases of narcolepsy over the years of my practice

with homeopathic medicine. Both cases were cured completely ie no return of the condition longterm. Both were given the same thing. there are 3 or 4 main remedies for treating 

narcolepsy. It works in my experience as a practitioner. i know its not many cases but its encouraging . We should be doing major research with homeopathy.

Let me know if you want more details

my website: www.homoeopathyuk.org

Best wishes,

 

Andrew Ward Dip IACH R.S Hom (UK)

Share this post


Link to post
Share on other sites

Hi Carrie I have posted in the treatment section so you can read it there but I have successfully treated two cases of narcolepsy over the years of my practice

with homeopathic medicine. Both cases were cured completely ie no return of the condition longterm. Both were given the same thing. there are 3 or 4 main remedies for treating 

narcolepsy. It works in my experience as a practitioner. i know its not many cases but its encouraging . We should be doing major research with homeopathy.

Let me know if you want more details

my website: www.homoeopathyuk.org

Best wishes,

 

Andrew Ward Dip IACH R.S Hom (UK)

So, based on your experience with 2 patients, you have a 100% cure rate for Narcolepsy. I may be missing some Orexin cells but the rest of my brain is just fine. "CURED" is a red-flag word for me, since there is currently no cure for Narcolepsy. Directing people to your own website seems questionable. While various medication and lifestyle adjustments may offer relief from symptoms, there is no cure. If there was a cure, we would have already heard about it. To suggest a cure seems either naive, dishonest or self-serving. I don't mean to sound offensive, but I am offended when I hear vague and simplistic answers to a misunderstood illness.  

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now