As good as it gets?

[DizzyDozer]

As I have posted before, I am having trouble finding the right medications. Everything I’ve tried has either had no effect at all, or made me feel even worse. Now I’m wondering what is the best I can hope for.

I started taking Ritalin about a week and a half ago. The first day I really thought I had found the medication for me. I was able to concentrate at work without any problems. Even my dizziness went away. I really felt good until I was driving home from work in the middle of the afternoon. I figured the effects of the Ritalin were starting to wear off. I would like for it to last a little longer, but I still had really high hopes. I even slept better that night. Unfortunately, the next two days, I was back to my normal, sleep, dizzy self. The next few days were good again, but I continue to have days when I feel as though I haven’t taken any medication. I’d say it’s about 50/50 if I’m going to have a good or bad day. I still think Ritalin is a good drug for me, but I’m thinking maybe I need to increase the dosage. Then again, maybe I’m hoping for too much.

Is this as good as it gets? Once you find the right medications, do you continue to have good and bad days? Are there still days that you can barely keep going? How do you feel when you are established on the right medication? How do you define a “good” medication or a “good” day?

[Cindy T]

Hi DizzyDozer,

[sleepynurseang]

I can only hope it's not as good as it gets, that's what keeps me going. I also recently started Ritalin and am working my way up the dosage coninuem but hope that at some point I can feel like a real person. I also have those "dizzy" moments, though I was never sure whether to associate them with my narcolepsy or not, I'm glad someone else has them too!

[shellbell]

I too felt despair after being on stimulants for 8 years and thinking if this is as good as it gets, life sucks. If you are newly diagnosed I will assume that most doctors will put you on stimulants. I've tried provigil, which gave me migraines, adderall, and ritalin. Nothing really improved my quality of life until my new medicine. You may have heard about Xyrem and all of the controversy surrounding it. I would suggest that you research this drug and read the other posts about it. It has completely changed my life. I now think I may actually be able to finish school and have a real career. I am almost normal. I haven't needed to take a nap during the day in about three months. I get around 8 hrs of sleep at night and I go all day and have some energy for the first time in my life. I was really sick the first few days of taking it, but all the side effects disappeared. The only issue is that you can't drink alcohol and take the drug, but I don't really drink anyway. I'm just excited because at 25 yrs. old, I believe and can be successful and enjoy the rest of my life for the first time. This drug is serious, but if you really want to experience a normal life, it worked for me. I actually sleep less and am more active than my fiance and some of my friends and everyone has noticed the change in me. Good luck finding what works for you.

[DizzyDozer]

Cindy – Thanks for your response. From reading some of your posts, I would say your symptoms are more severe than mine. Your words helped me put things more in perspective. I should count my blessings. Ritalin really is helping me, I’m just hoping for better.

sleepynurseang – Dizziness has been a real mystery to me. I’ve been told by multiple people that dizziness is NOT a symptom of narcolepsy. For awhile, I thought it was medication induced, but when I went off all medications, I was still dizzy. My sleep doctor sent me to an ENT to try to figure out what was causing it. He couldn’t find anything. I am more and more convinced that the dizziness is related to how sleepy I am. The fact that the Ritalin seems to have helped relieve the dizziness reinforces that. If I’m not sleepy, I’m not dizzy. I’m thinking the dizziness is simply a side-effect of the sleepiness. So it may not be a primary symptom of narcolepsy, but could be a secondary symptom. In any case, I hope you also find Ritalin will help with the dizziness.

shellbell – I was diagnosed about four months ago. I’m just the impatient type, and want answers NOW. I had a paradoxical reaction to Provigil, which is the only other stimulant I’ve tried so far. It made my EDS worse, to the point where I could not function. My doctor has already talked to me about Xyrem. The thought of it is still a bit scary to me. I’ll face my fears if it comes down to it, but I’m really hoping to find a solution without Xyrem. The fact is, I was pretty nervous about taking stimulants too, but I got past that. Thanks for your input. Knowing you can feel that good with Xyrem is something I need to consider. I'm glad it has been so effective for you!

[asdfjkl;]

I am frustrated too about how my medication gives such uneven, unpredictable results. I was diagnosed less than two months ago (I had/have a bunch of weird unexplained symptoms like you, dizzy). I started on Provigil but after the first week, I felt like it had completely stopped working. Now I am on a really low dose of Ritalin and am also working my way up. I started at 5mg twice a day, now I take 10 when I wake up and 5 at lunchtime. This dosage made me sometimes feel slightly wired (actually, just more chatty than usual), but then the next minute I'd be sleepy. The sleepiness is much more manageable now than before though. I can stave off sleep much easier. So my doctor wanted to increase the afternoon dose to 10, and I told her I was uncomfortable doing that because I have these up and down feelings and don't want to amplify them and get MORE wired. So we added 200mg of Provigil back in, 100 upon waking, 100 at lunch. She thought the Provigil was less likely to make me feel wired, but would help improve the unevenness of the Ritalin. I feel SO much better than I did two months ago, however I still don't feel "normal" and am hoping it will get better than this.

Another concern I had about increasing the Ritalin is that I am aware that long term use of these drugs usually leads to tolerance, which is why the doctors have to keep increasing/adjusting the dosages, and then eventually, once you reach a max, you have to switch to something else. This does not sound like it's an ideal solution. That is the only reason Xyrem is remotely appealing to me. Not only are you not having to be dependent on stimulants to live, but you don't have to constantly "adjust" throughout your life.

Do people that take Xyrem have to take drug holidays like us stimulant-taking people? Do you have to constantly adjust the dosage of Xyrem? Do you eventually build up a tolerance to it?

[Cindy T]

Hi asdfjkl;,
I understand your concern with developing a tolerance to stimulants, thus the need to continue increasing the dose. Unfortunantley, hind sight is 20/20. If I had know then (when started on stims) what I know now, I may have given it some more thought.

Because of the need for taking stimulants like Ritalin, Adderall, etc. is so common amongst us Narcoleptics, I don't think our sleep doctor's really even give this much thought. I have an excellent sleep specialist, and don't think any less of him because of it, but who really tells us upfront that someday we will become dependent on the drugs that we are prescribed and so badly need just to function?

Personally, I didn't even think about how my body would become so dependent on these medications that I would be unable to function without them. I didn't even question it, and the thought never entered my mind.

At that time, I knew nothing of Narcolepsy, hadn't even heard of it before then. I didn't do any research on the topic at that time either.

Believe me, I still trust my doctor fully, and feel that he truly has my best interests in mind. He is really a great doctor, and I wouldn't change doctor's for anything. I doubt that the tolerance and dependence on the amphetamines was even a thought at that time.

With new technology like the internet, people who are being diagnosed today have a huge advantage over people who were diagnosed several years ago, as I was. They have the advantage of researching the disorder, the medications and treatment options, etc.

I totally understand where you're coming from with your concerns. Hats off to you! In this day and age, why not research as much as possible? If I had had that opportunity back when I was diagnosed, I probably would feel the same as you do now. Your concerns are very valid, and it's great that you know some information about the drugs you've been prescribed before it gets to the high end of the dosage range.

Take advantage of the resources available out there to answer your questions and know these type of things in advance. I wish I had.

I think it's great that someone can be a step ahead in the game. Learning is definitely a life-long process for sure.

Take care now.

Cindy

[DizzyDozer]

I find the internet to be a double edged sword. I tend to obsess about medical issues, both my own and my family’s. Finding out as much as possible always provides comfort to me and helps me stop obsessing. However, it also opens the door to more fears. I have had my eyes wide open to the possibilities of drug tolerance and addiction since I started down this road. I have probably been overly cautious about what I take and overly vigilant to signs of problems. But when all is said and done, I still need medication and my choices are limited. In fact, as far as I can see, all of my options are addictive. So, I’m taking stimulants (and trying sleep aids), knowing I could end up in trouble down the road. Other than Xyrem, I don’t see another option. And Xyrem gives me a whole other set of fears.

If you knew years ago what you know now, what would you have done differently? You needed stimulants, so you took them. When they became less effective, you took more. What else could you have done? I’m sorry if I sound fatalistic. I’m really just trying to take advantage of your hindsight. I appreciate your willingness to share your experiences.

[DizzyDozer]

asdfjk; - Sounds like you and I are still in the same boat, only you are still trying Provigil. If it makes you feel any better, I am taking 20mg of Ritalin a day, all in one dose. I’m considering splitting the dose because I feel so worn out when I get home from work, even on a good day.

[hessie28]

I was on 1000mg of Provigil and 20mg of Ritalin and still exhausted. Now I am off that and on Dextroamphetamine. Right after I take 30 mg in the morning I fall asleep for a few hours. Then around 7pm I pass out again. Then I can't fall asleep until 5am. That schedule is okay for now since I am home recuperating from surgery. But, when I go back to work it won't do. I would love a magic pill

[Arizonahugs]

I've had narcolepsy and cataplexy for 43 years. Wasn't diagnosed until 13 years ago. I've been on all the stimulants. Provigil had terrible side effects for me. I've been on Dexedrine the most of small handful of drugs to choose from. It does little for me except get me out of bed in the morning.

What bothers me the most is that I didn't realize that narcolepsy gets worse as we age. And also, after years of taking stimulants, it's only natural for our bodies to not respond as well. I'm not willing to take extremely high doses, creating some havoc in other ways in my body, just to get a teensy more energy.

I'm on Xyrem now and my good friends here on TAS have to remind me almost daily to be patient. It's been almost 3 months. I had to stop for a couple of weeks though. It produced intense anxiety and panic attacks because my starting dose was too high.

I'm on a lower dose, and will titrate up slowly. I'm taking my vitamins and supplements. Yet I actually feel almost worse - more sleepy. This too, I'm told, is not unusual in the beginning with Xyrem. I take anti-depressants, but my depression seems to have increased since taking the Xyrem..

I'm keeping my fingers crossed that things will turn around on Xyrem. I'm hoping that it is not a case where it works better on the younger folks than on the older folks. Xyrem is absolutely my last chance at any semblence of a life.

Narcolepsy has stolen so much from me, especially in the last several years. Haven't been able to work in over a decade. I'm trying to stay positive and make the most with what I have, but some days I have to admit, look awfully bleak.

[Starlight]

It amazes me how far apart all of us are and how over a period of just a couple of days someone completely across the country can be having the exact same thoughts and questions as myself.

I've wondered the same thing about becoming dependent on the meds. There's no doubt that with working a full time job, I'm dependent upon the meds to keep my job ~ that's what drove me to the doctor.

I'm very open to more natural herbs and/or therapy of that type. Has anyone investigated these type of options, if there even are any? I haven't made it that far yet as I can barely get through my 8 hrs. and dinner.

Thank you in advance for sharing.
Starlight

[Arizonahugs]

Oh yeah. This is gonna be fun. I can think of a couple of good friends here who will be more than happy to discuss more natural approaches to medicine. Let's hope they read this thread.

[Starlight]

Oh - I didn't make that very clear did I?

I mean, for staying awake!

Not the for going to sleep, LOL.

Starlight

[hessie28]

It definately gets worse as you get older. I'm at the point where I can barely work. I can barely drive. I'm 41. What does the future hold? There are days I'm consumed with Narcolepsy and OSA not to mention the host of other medical problems I have. Then I think to myself I am actually lucky. I have a great family. None of my medical problems (there are many) are terminal. I haven't passed any of them to my son. He had the blood test done for the gene. We can only hope they find a cure some day.