Not from the UK, but I would love to hear from anyone anywhere who has narcolepsy. Sure is hard to find open, first-hand-experience dialog on the subject.

Hope you get the dialog rocking UK style. . .

Oh my, I did sound like I wanted exclusive dialog from the UK, but I would also like to hear from anyone, anywhere too. I would also like to meet up with someone who has narcolepsy, hence asking if anyone was from the UK. And yea this is not a pick up!! I had a close friend round last night and I felt disembodied and unable to connect. I asked how she was was, got her to talk, whilst I drifted in and out of this realm. When she left, I felt low, a sense of alienation. What do you say when someone asks how are you are? She knows about the condition, but you know what its like its impossible to explain. When I do open up a bit, I hear myself and think you sound nuts, so reel it back in. It is a condition of madness in some ways, but we are not mad, as we know its symptoms from the brain not firing properly. When I have gone the full way and explained, I just end up crying and I don't like that...kinda of dampens the mood and what can friends say, because they look bewildered and it puts them in an awkward position. I have been feeling increasingly alone and I can feel self pity creeping, but I don't want to feel that. I can remember what I was like when I didn't have this, how dynamic I was. But over the years have succumbed to its limitations and sometimes I see positives in this condition. But at the moment, I guess I feel angry that I am in this place with this condition and alone with it. I am grateful that I can share this, thank you.

Oops. . . This forum moves so slow that I mostly forget to check in. Didn't mean to leave you dangling.

I understand well the geographical wish. I have dreams of eye to eye conversation, too, but I works with what I gots. If I have to settle for one of them snotty Britts, (:-P) I'll get past my Irish American prejudices far enough to give it a shot, though somebody closer to home would be my ideal. My eldest son (36) suffers Narcolepsy, as well and we *still* can't get the dialog going. It is THAT hard to talk about.

I have been in therapy since 1972, when I was almost 17 years old. Most of that therapy has been for what is now being called, PTSD and Bipolar. I am a child sex trafficking survivor, so the PTSD therapy has been the lion's share of that therapy. When my eldest son (ES) was diagnosed with Narcolepsy in 1999, I nearly took the sleep latency test myself, but. . . Current treatment for Narcolepsy is not that different from Bipolar treatment, and ES was pretty hysterical with the notion, so I gave it the ol' why-bother shrug. Still. . . I have tons of evidence that Narcolepsy runs through my bloodline like a freight train. Alas, so does family estrangement. Asking any questions of any stripe is a problem across family estrangement lines.

What do I say when people ask me how I am when I am anything but "Fine?"
"Making it."
"Taking it a step at a time."
"Prayers in progress."

How much I share about the not fine parts depends on . . . More vagaries than I have words to describe.

Hello, I am also looking to talk to someone from the UK. I am near Bournemouth. I am 53 and was diagnosed with narcolepsy and cataplexy in 2002. The symptoms started slowly after the birth of my 1st child and when I was pregnant with my 2nd I was virtually comotosed. I have tried and tested numerous drugs. The last 15 years have been a blur, I was in denial for 10 years, expecting it to disappear just as quickly as it came, no such luck. It would be lovely yo talk to someone who understands. I have also just started suffering from the symptoms of the menopause and have had to take a very strong Hormone replacement therapy which has taken the edge off and helped a bit with the cataplexy. I had been taking WAKIX PITOLISANT for the last 3 years and I probably fell down 3 times during this period, it helped enormously with cataplexy, however I gained more than 3 stone. I have just moved back to the UK following 15 years in France and WAKIX is not available here, so at the moment I have returned to large doses of MODIODAL MODAFINIL, which I hate. I hate feeling sorry for myself and want to try and find out more about this illness. Did anyone hear about infections in the large intestine causing the same symptoms as narcolepsy ? Would love to hear from anyone suffering from this awful disease.

No, I haven't heard about the large intestine mix-up. Got a link? I wonder if that could be true for infections, in general. "Extra rest" has been on the script list for every infection I've ever gone to the doctor for. Sinus infections knock me off my feet every time.

For sure, there sure is allot of belly pain (spastic colitis) in my own life, as well as my family tree. Where there is pain, infection is likely to follow, but I do believe it is bigger than a single infection. Infections are too easy to test for.

Hope you two get together. May it bring enough strength to inspire across the big pond. The global silence is frustrating.

Hello,
Apologies Arfie for not having replied sooner....I have been ill, which is demanding on top of the narco. Sleep deprivation gone haywire and feeling out of it for weeks, foggy and forgetful.
My take is that often people get chronic disorders, especially auto immune ones, when they have been through a lot of trauma and you have been through intense ordeals. From my research on narco, its causation or trigger point is either a serious infection or a serious trauma or traumas. I had a major sinus infection 2 years before I got narco, which lasted a year and left me completely depleted. I also was undergoing a lot of stress at the time and the day before it started, my ex husband broke into my house and my bedroom when I was asleep and ranted at me. The following night I started hallucinating and having violent nightmares. 12 years on I still dream of been broken into and dark figures standing in my doorway. I recognised the symptoms immediately as my Father had narco. I don't blame my ex husband, it could have happened anyway with another trigger. I guess it isnt that important the trigger point, only as far as any light shed can help us manage it better. I wonder how your pregancy was...childbirth and starting a family is so completely new that it can have a profound impact on us. We are conditioned to believe that once diagnosed with something, the Doctors can medicate and we will get better. But narco is notorious for the lack of understanding despite the efforts of those researching it. I do understand the denial Jackie, the belief that it will go away at some point, because the alternative, to live like this all of our lives, is sometimes too much to bear. I remember clearly how I was before narco, energetic, pretty dynamic and embodied and when I think about me before, I get tearful. I am sure this resonates with you both. But we have to deal with what is. Over time, I have learnt to succumb , accept more and manage better. But there are days when it is just too overwhelming and the tears don't stop. Every day, I ask how much can I manage today, can I accept an invitation to go out, can I appear normal and fit in, am I am going to have a seizure, will people think I am drunk. Over time, the violent nightmares have abated a little, I manage better, but it is baby steps. The first thing I was asked at the sleep clinic was whether my Dad was obese. Its seems an added blight that we gain weight with narco, as our metabolic rate isn't working properly. I am 51 and have been through the menopause and in the last 2 years have put on 2 stone. Its so demoralising, as I not only have lost who I was as a person but also how I looked and a plummet in my self esteem. Both mind and body out of my control. But we can decide how to react to this, there is still freedom in that. I hope you have a loving, supportive husband, who has helped you through this. Its hard for others to understand but just knowing you have some support is uplifting.
When I read your post, I couldn't believe what you wrote about intestine infection. I was really stunned, as the illness I have developed over the 2 months is diverticolitis, and my intestine is infected and inflamed, hence being in bed. I have never had it before. So I was truly surprised to read that. If you have any other information on this it would be really good to hear.
I have been seeing a counsellor for 4 years now. Arfie you also said you have been in therapy. It helps me a lot, even though he can't understand when I talk about different realities and my night realm. Just a safe space to spout, explore, rant. We can see it as a curse and we do on bad days, but I also think it is a blessing in a bizarre way...Wont elaborate now, I have spouted on too much already. Talking to someone who has this condition, is invaluable so a big thank you and I hope both of your days have been kind to you.

It was actually your fellow Brit, Jackiuk who brought up the intestinal infection presenting Narcolepsy type symptoms. I am hoping she will be back with further information and a meet-up opportunity for the two of you.

Spastic colitis and its off-shoot, diverticulitis do, indeed, run through my family tree, including my branch of it. Seems I am hearing it called "irritable bowel Syndrome" these days, but I was dxed with Spastic Colitis. At 62, I don't believe there is a dx in my medicine chest which hasn't changed names more than once. Still hurts the same, by whatever name. I am pretty sure my colon woes are more complex than any one factor, but I get my greatest relief from treating it like a psych symptom. I step up my program work instead of visiting a doctor. Been entirely too many visits since they had anything new to tell me about it.

I had my first therapy appointment in May, 1972. I started therapy in earnest in the U.S. Army in 1974. I spent more therapy time arguing the p's and q's of the psychobabble than working on my symptoms until the mid to late 80's when my family, business and social life were falling apart at the seems.

I am currently in "therapy maintenance" phase. There are no cures available, but my shrinks felt I am well enough grounded in my self-styled therapy program to manage ^it^ on my own with on-going maintenance. I have lived through several psychotic breaks. Don't wanna go there again. I take my daily maintenance seriously.

Yes, I believe therapy helps. My pros have contributed mightily to my healing, but I my peer support network is the heart and soul of my therapy. Still no Narcolepsy support, but I am a child sex trafficking survivor. My symptoms are diverse enough to fit just about anywhere. I work with what is available. Do first, label later.

I rarely visit a doctor and don't like the way everything is compartmentalised and labelled. If you have this condition, this disease, people make assumptions based on the label and none of us like to be put in a box. Each of us will manifest our conditions individually. We are not defined by our condition, although it limits us. I try and take responsibility for managing the narco, counselling being one way I cope. Swimming regularly is my lifeline. I have to force myself to go, make every excuse under the sun, but when I do, it gives me an hour or 2 of clearer thinking and a little more energy.
But a lot of the time, I just want to hand it all over and say please make this more bearable. Narco is so draining that there are few resources left to manage it better. Just slept this afternoon for 4 hours without waking, that's rare.

In the case of Narcolepsy, I have yet to find a medical team I can hand it over to. There isn't enough established knowledge of it for comprehensive treatment plans. Ditto for the spastic colitis. I only believe the unofficial staff label for both conditions is, JPC. "Just Plain Crazy." Not experting. . . I only believe.

I agree we are not defined by our conditions unless we choose to be. I takes my handicaps one symptom at a time. Seems to me that agonizing over them only amplifies them. I cross each proverbial bridge when I get to it.

I've been on a sleeping binge. Been sleeping more hours than I have been awake. I had my first full, productive day in a while yesterday. Sure felt good. Dare I get greedy and hope for another productive day today?

Nah. I'll dance with whatever Life sends me. Small steps, big faith and lots of prayer, by whichever name.

Thanks for the dialogue, Teresa. Kinda exciting. . .