I thought it could not get worse-Narcolepsy

[ktmandal]

Hi, I am a 42 year old with what I consider relatively severe Narcolepsy.  I was diagosed about 4 years ago.  I have been able to function somewhat normal since then however that is with taking 40 mg Ritalin LA and 600 mg of Provigil a day.  Let me also say that I also have high blood pressure, controlled type 2 diabetic (non insulin), Fibromyalgia and have had a major lumbar spine fusion with instruments. I have a VERY detailed job as I work for a regulated utility company and I am on the phone all day (usually 10-11 hrsr a day) doing sales and service- it is very very stressful, my job classification is the only job classification that actually  has paid STRESS LEAVE!!  I was off work for over 8 months with the spinal fusion and didnt need to stay awake, so I was not taking my meds for my narcolepsy.  I am now back to work on a 4 hour a day basis and I CANT FUNCTION hardly at all.  I can not concentrate to learn the changes, I cant remember most of my job, I am forgetful, I feel like my brain is being overloaded and because I am SO SLEEPY its all I can do to stay awake. The same meds that I was taking dont seem to do anything anymore.  I have one of the best doctors in the city. He is both a Neurologist and a Pulminologist. He has told me that Narcolepsy does not get worse but I feel like mine is!!  I slept 20 hours last weekend straight through, got up ate, showered ect and went back to bed in less than 5 hours and slept all night. I am so depressed.. and have never been in my life.. crying all the time because I feel like my life is out of controll!!  My Dr did another sleep study and they did find alittle apnea but not enough (said the tech) that would cause all of this. I have a set schedule daily (sleep wise) get plenty of hours in bed (usually 9-10) I dont feel like I sleep well but I take Pamelo (600mg) nightly to help with REM and Fibro.. has anyone ever been through anything like mine?

[pattir727]

Hi kt,
I have had Narcolepsy- Cataplexy  for 17 years.
I take 20MG of Ritalin (methylpenidate) 3 times daily
The half life of 20MG is 3 to 5 hrs

I also take Desipramine 3 times daily it extends the life of Ritalin

(Use to take Vivactil and Imipramine, these are usually the first choices by Neurologist, Had to stop allergic to color-coated-pills}

I also have RSDS, CFS, Fibromyalgia Restless Leg, GERD, Allergies to Medication and Food.

You are constantly learning about your disorders.

Good Luck

[pattir727]

Hi kt,
I have had Narcolepsy- Cataplexy  for 17 years.
I take 20MG of Ritalin (methylpenidate) 3 times daily
The half life of 20MG is 3 to 5 hrs

I also take Desipramine 3 times daily it extends the life of Ritalin

(Use to take Vivactil and Imipramine, these are usually the first choices by Neurologist, Had to stop allergic to color-coated-pills}

I also have RSDS, CFS, Fibromyalgia Restless Leg, GERD, Allergies to Medication and Food.

You are constantly learning about your disorders.

Good Luck

[Suri123]

Hi ktmandal, thanks for your reply. Hope you are keeping well? It is really tough to take decisions especially when it comes to health of an individual or family care and career. You have indeed done a right thing of giving importance to health rather than money, once you feel better and get back to your early days, you will be able to perform well with your job. Try to continue rest of medications prescribed to you. Make yourself bit comfortable and find ways how you can be relaxed. Do some regular exercise, have good nutritious food, take daytime naps if possible, weekend outings or kind of family get-together, which can bring in some change to daily living. Good luck to your new job. Keep sharing your thoughts and update on your progress. Take care.  

[scarlet37]

Boy oh boy do I understand  answering the phone and recieving " sorry to wake you up". I keep trying to explain that no matter what I am ALWAYS tired and that there are times where it is truly painful to fight the sleep!!  They all say they understand but honestly they don't.

My husband commented last night he thinks I am doing much better and to some degree the ritalin does help but when it wears off I am fighting sleep so bad my neck has become stiff from trying to hold it up!

If people with N had a third eye or crooked leg people would understand how devastating this can be but not being able to see this disability makes it harder for them to understand. In slightly more than 2 yrs I have gone from a multi-tasking multi-tasker to having to write everything down. I have notes for my notes, heck even just remembering if I fed the dog 5 minutes ago is hard!!!!  I am trying to get over the fact that I will never be the same but it is a difficulkt and stressful job. I also talk to myself alot now just to get through the smallest tasks. I figure if it works for me then who cares what others think. I often recieve odd glances in the grocery store but I have learned to ignore most of it.

Because of having surgery your body itself is under stress to heal. The pain and inflammation of healing can interefere with normal processes- so in a sense YES your surgery made your N worse. If you look at Fibromyalgia it is considered an autoimmune disorder ( they think N may be one too ) so in autoimmune your body is attacking itself dur9ing periods of stress and illness. Since your body is in a state of constant attack and you had surgery it takes all that much more time to heal. Adding vitamins such as grape seed and amino acids as well as B,C, Acidophilus can help the correctly working cells to function more normal. Any additional antioxidents we can supplement for our bodies helps reduce the stress on specific organs like the liver and kidneys.

I have accepted the fact I will never be 100% again but I pray for at least 85%- good thing I have blond hair- it does make it easier for joking about things.
I hopethis helped a bit- just know you are not alone. Another website you can visit is
" talk about sleep", there are many others there with N too and might be more helpful.

hang in there~

[ktmandal]

Thanks so much for your posts.  I am actually in the process of changing my career. I am working on getting my Property and Casualty lisences. My insurance agent has been trying to get me to work for her for a few years now.  Because my job would not accomodate a more flexible work schedule (due to seniority violations) I really have no other choice.  Plus the stress level is so high that as I mentioned my body just shuts down.  I literally have to work at keeping my eyes open to even read something more than 3 sentances long.  So with this new position I will set my own hours and amount of work and will be working from home in order to get the flexibility that I  need.. maybe a mid afternoon nap or work 2 hours then break or something.  But making this decison has been such a stressful event due to with my resignation I am leaving behind the best benefits (medical, vision, script ect) of any company in my state. My husband will be able to get insurance for us but the coverage is not that great So with my income (at least the first year) being decreased by over $25000.00 its a very hard decision that I have made. But, I know that I have to do this as I am just not able to function anymore at my present job.  

I have thought about possible script interactions, so today I found a place that I could check all my meds to see if any interactions are present.  It did find quite a few and one being a severe interaction involving my Ritalin and my Pamelor.  But I dont quite understand what they are saying.. its all in medical terms.  I will bring this up to my Dr when I go on Tuesday (march 11).   The HBP has been present long before I was diagnosed with N and taking the meds.  But recently they changed my BP meds.  Now it is back somewhat normal to appx 140 over 100. I started taking my meds appx a week before going back to work as I am aware that some meds are mainstream and take some time to get back into my system.  Even doing that I am not getting any of the relief that I used to get before my surgery. I am actually getting more exercise than I have in over 20 years with my physical therapy still ongoing 2-3 times per week from the spine fushion.  We do eat healthy for the most part due to my diabetes. I do have acid reflux and take meds for that as well,  I guess for the most part my biggest concern is how and why have the changes taken place in less than a year--Meaning before I was functioning as near to normal as any N patient could pray to,,,,however now its all I can do to stay focused for more than 10 minutes on one thing.. not to mention watering eyes due to trying to stay awake to work and function. If N does not get worse.. that what is happening to me?  Sorry to go on about this.. but I am feeling so helpless.. and out of controll which is an oximoron when you use those words associated to me. Anyone that knows me are just as baffled with whats going on to me.  When I answer the phone.. everybody apologizes for waking me up.. but I am not sleeping.. and they say.. Oh it sounds like you were sleeping.. sorry.. so its just not me.. My coworkers have noticed immediately that I am not the same as when I left back in July,  my family, friends.. all notice the difference.   Thanks for your help..

[Suri123]

Hi, how are doing? You indeed need to focus on getting out of stress which seems to be main culprit as a aggravating factor. Commonly anyone suffering from a disease for long time does go through a very stressed life as one cannot lead a normal life. Taking many medications interferes in body function and some to the extent of dependence problems. Taking proper rest, healthy food, regular exercise and learning relaxation techniques is key to your problems. Consult the sleep specialist for recheck. Hope you do better and keep posting about your progress. Take care.

[scarlet37]

I'm sorry your having such a hard time. I too have narcolepsy. I disagree with your doc saying that narcolepsy cannot get worse- no one knows that until they have experienced this disabling disorder.

How long before going back to work did  you restart your meds?  I wonder if the combo of provigil and ritalin is causing your hbp. I had a hard time while on provigil- It made my bp rise and made my sleep attacks worse.

Did you ever consider acid reflux as the problem behind the mild apnea?  With a disorder such as fibro and narcolepsy I wonder if your digestion is slow causing a back up of acid. I have hypothyroidism on top of N and I am finding relief for a mild airway resistance with prilosec. I've also added a few extra vitamins such as grape seed, cinnamon, and fiber supllements.

Hang in there -  

[Suri123]

Hi, You seem to be undergoing severe stress, as you have to cope up with many of your problems, work and daily routine. You need to try and relax and plan a healthy sleeping habit, which should be followed on long-term basis. A change in place or in your job might be helpful. Keep you blood pressure and blood sugar under control. Modafinil is a central nervous system stimulant used for the treatment of narcolepsy. It is also used for the treatment of excessive daytime sleepiness caused by obstructive sleep apnea/hypopnea syndrome and shift-work sleep disorder. Lifestyle adjustments such as avoiding caffeine, alcohol, smoking and late bulky meals, scheduling daytime naps, regular exercise and healthy food habits can also help in decreasing your symptoms. It would be better to consult your neurologist again, before you chose to take any drug for recheck. Take care.