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Newly Diagnosed, Apprehensive About Meds


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#1 ERINLYN

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Posted 15 February 2009 - 06:15 PM

I was just recently diagnosed with narcolepsy without cataplexy and they put me on ritalin 10mg 2 tabs 3 times a day for one month. It helped a little but nothing to get excited about.

So back to the doc and he adds Concerta to make a long acting 54mg and still has me take ritalin 10mg 2 tabs 3 times a day. So essentially doubling the dose. It helps more than the original dose at first but then the latter half of this week since the change it seems as though Im more tired than before! Im going to be super early, wanting to nap all the time etc. Seems to correlate with PMS but im not sure if thats a real factor or not.

So the doc said he'd try Provigil instead of Concerta and still have me continue with the ritalin 10mn 2 tabs 3 times daily if I didnt get good results from adding the long acting concerta. So i called him and said yes lets do that. But then I started looking into Provigil and Im not too thrilled with some of these side effects Im hearing, interfering with birth control (doc didnt mention that) muscle pain and headaches?! Plus it seems as though a lot of people on this forum have gotten no benefit from Provigil so I wonder if its even worth trying. Also seems like Provigil can increase anxiety and depression which I take Effexor XR for and have for years.

His other drug to try was Adderall but he said he prefers not to prescribe Adderall as he had a woman almost have to be admitted to a psychiatric hospital from that drug. Thats pretty scary but I also remember from being a pharmacy tech 6 years ago that Adderall was pretty commonly prescribed.

Im not really sure what I should do. I was so relieved when I was finally diagnosed with something that I wouldnt be tired anymore but it seems the more I read the more it seems no one is ever able to fully wake us up. Any feedback would be great, the Provigil is waiting at the pharmacy and I have to make a decision.

thank you

#2 Henry G

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Posted 15 February 2009 - 06:30 PM

QUOTE (ERINLYN @ Feb 15 2009, 11:15 PM) <{POST_SNAPBACK}>
I was just recently diagnosed with narcolepsy without cataplexy and they put me on ritalin 10mg 2 tabs 3 times a day for one month. It helped a little but nothing to get excited about.

So back to the doc and he adds Concerta to make a long acting 54mg and still has me take ritalin 10mg 2 tabs 3 times a day. So essentially doubling the dose. It helps more than the original dose at first but then the latter half of this week since the change it seems as though Im more tired than before! Im going to be super early, wanting to nap all the time etc. Seems to correlate with PMS but im not sure if thats a real factor or not.

So the doc said he'd try Provigil instead of Concerta and still have me continue with the ritalin 10mn 2 tabs 3 times daily if I didnt get good results from adding the long acting concerta. So i called him and said yes lets do that. But then I started looking into Provigil and Im not too thrilled with some of these side effects Im hearing, interfering with birth control (doc didnt mention that) muscle pain and headaches?! Plus it seems as though a lot of people on this forum have gotten no benefit from Provigil so I wonder if its even worth trying. Also seems like Provigil can increase anxiety and depression which I take Effexor XR for and have for years.

His other drug to try was Adderall but he said he prefers not to prescribe Adderall as he had a woman almost have to be admitted to a psychiatric hospital from that drug. Thats pretty scary but I also remember from being a pharmacy tech 6 years ago that Adderall was pretty commonly prescribed.

Im not really sure what I should do. I was so relieved when I was finally diagnosed with something that I wouldnt be tired anymore but it seems the more I read the more it seems no one is ever able to fully wake us up. Any feedback would be great, the Provigil is waiting at the pharmacy and I have to make a decision.

thank you


Try it out.

With me Provigil started very well but then started become increasingly problematic.

Problem with Provigil as opposed to Ritalin say. Is that it acts for a long time, over 7 hours. There is no way to modulate it, if you take 1/2 it may not work at all. So it's either a big bang or zero.

I personally like Ritalin and Amphetamines because I take it as needed - they are short acting. Sometimes I would even take 1/4 of a pill because that was all I really needed.

Provigil seems to work with a threshold, for it to work - you need to take a sufficient quantity so it can fire up inside

I am of the belief Provigil should be kept only for emergencies. Like a very important long-day meeting or a marriage. Take it every day and undoubtedly it will lose it's effectiveness over time.

#3 jenji

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Posted 15 February 2009 - 07:50 PM

I was on 36 mgs Concerta for about 4 years and it seemed to help quite a bit, but then it suddenly stopped after about 2 years in that I started to slowly and then quickly decline back into my original state of N and i'll tell you, I was back to really, really dragging my butt around more than usual.

So, then the doc put me on 54mg Concerta (time release) and I found that mg to be very harsh, in that BOOM!, yes I could feel it begin to work within a half and hour and I was set to go, but then within two hours I was running on an exhausted go go go, as opposed to just go go go, and once 3-4 hours passed the drug suddenly dropped off and BAM! no more energy at all; in fact, after a high dose Concerta I was far more spent than when I wouldn't take it at all. The high dose also gave me mucho anxiety and irritability. So, the Concerta high dose didn't work very well for me, however the low dose did a bit better.

Now I'm on Adderall XR and it really seems to be working well. It's not as harsh as the high dose Concerta and it is very incremental in its effects. Once I take it, I'm ready to go within an hour and it holds out for pretty much the entire day. Sometimes I find that I'm still sleepy, but that's when I'll usually take a short drug holiday (a weekend), say 2-3 days off Adderall and then start back up again, wherein it begins to work well once again. For now, I'm on a very low dose of Adderall, although my doc would like to increase it b/c in comparison to the original dose of Concerta that I was on for so many years, my current dosage of Adderall isn't even near that orignial Concerta strength.

So, we'll see. But overall, I found the Adderall to be much gentler. However, I'm sure it all depends on your dosage level and whether or not it's time release.

Oh and by the way, it doesn't matter what sort of drug I have in my system, PMS knocks me on my butt every, single time, so yes, if PMS is a factor for you, don't forget to factor that into your equation. PMS is evil.

good luck.
jenji

#4 loki

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Posted 17 February 2009 - 04:03 PM

Hi, I'd say go ahead and try it. Everyone is different. Some people it works great, others not so much. All of these drugs have some scary side-effect profiles so you take a risk with all of them. Just my own experience I had an allergic reaction to Provigil. Also it did not clear out of my system fast enough, I stayed awake alright...all night long and into the next day!

BTW, your doctor is wrong about Adderall. Ritalin could cause the same effect in someone sensitive enough to it. It's another risk, he's being negligent IMO to withhold a drug that might help you because he had one patient have a bad reaction. It happens sometimes, doesn't mean the drug is bad for everyone!

#5 chimbakka

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Posted 18 February 2009 - 08:36 AM

QUOTE (ERINLYN @ Feb 15 2009, 04:15 PM) <{POST_SNAPBACK}>
I was just recently diagnosed with narcolepsy without cataplexy and they put me on ritalin 10mg 2 tabs 3 times a day for one month. It helped a little but nothing to get excited about.

So back to the doc and he adds Concerta to make a long acting 54mg and still has me take ritalin 10mg 2 tabs 3 times a day. So essentially doubling the dose. It helps more than the original dose at first but then the latter half of this week since the change it seems as though Im more tired than before! Im going to be super early, wanting to nap all the time etc. Seems to correlate with PMS but im not sure if thats a real factor or not.

So the doc said he'd try Provigil instead of Concerta and still have me continue with the ritalin 10mn 2 tabs 3 times daily if I didnt get good results from adding the long acting concerta. So i called him and said yes lets do that. But then I started looking into Provigil and Im not too thrilled with some of these side effects Im hearing, interfering with birth control (doc didnt mention that) muscle pain and headaches?! Plus it seems as though a lot of people on this forum have gotten no benefit from Provigil so I wonder if its even worth trying. Also seems like Provigil can increase anxiety and depression which I take Effexor XR for and have for years.

His other drug to try was Adderall but he said he prefers not to prescribe Adderall as he had a woman almost have to be admitted to a psychiatric hospital from that drug. Thats pretty scary but I also remember from being a pharmacy tech 6 years ago that Adderall was pretty commonly prescribed.

Im not really sure what I should do. I was so relieved when I was finally diagnosed with something that I wouldnt be tired anymore but it seems the more I read the more it seems no one is ever able to fully wake us up. Any feedback would be great, the Provigil is waiting at the pharmacy and I have to make a decision.

thank you


i started with provigil (modafinil, in canada it's allertec) my first complain was the cost, sooo bloody expensive and no generic avail, so definately look into cost if you ahve no coverage or a large copay. second, it did nothing to help if i was stressed or in pain. this was ok, except because it made the birth control not work my gyno problems (which give me moderate pain constantly and occasional severe pain) made it not work... well then the being tired made hte pain feel even worse which made the modafinil work even less... you see my point. it did raise my pulse and bp. my resting pusle was about 100-120 usually but i was always low for bp (norm was 90-100 on 60-70) so going up to 110-120 on 70-80 was not a problem for me).
i would first consider the cost
if you are ok with that second consider the birth control. there is "not enough evidence" to show to what extent it affects you, but i can tell you i was taking it when i started and i saw my symptoms come back as fast as they would if iw as not on anything. that said i was on a very low hormone dose. you may ask about what he thinks about a high dose bc pill if you want to try and stay on it. BUT you will want to add protection for pregnancy purposes.
lastly, it depends on your stress level. i am also on effexor (150) and i didn't find it increased my anxiety, BUT if iwas stressed (at a funeral for my gramma in law it didn't work even 400mg i slept on a pew most of it) or in pain (even just menstral cramps would make it work less) then it may not be as effective
i did also have some muscle pain, but i always have and i haven't been on the ritalin long enough to see if being off modafinil helps that
the ritaln is helping me. i take 10mg fast acting with 20mg extended release upon getting up then about 6-7 hours later. i don't feeli like im "fighting" to saty awake, but i am tired still and could nap occassionally if i had the chance. i can handle feeling tired, i CANT handle "fighting" to keep moving/my eyes open/etc. that was hell. im talking to my dr about increasing the extended release doses and adding an extra short release as needed, i work 12 hour shifts sometimes and that's what i'm having problems wiht. also i don't get much accomplished even after a shorter shift, i have to lay down for the night.
BUT all in all it is nice not to feel ike a bad of dirt ALL day and atl east bea ble to work... it's a slow process. i was Dx'd in oct, was good with provigil until the pain started. now im good with ritalin and working out the kinks in dosage to feel awake more and sleepy less, but all in all it's great not to be a zombie bag of dirt LOL
also, you may want to ask about dexadrine with or without ritalin. im not sure if it can be taken with ritalin. but it is avail generic and is probably much more affordable than the modafinil. i would ask your dr to spell out ALL med options then weight htem out (pros and cons) to YOUR situation.
for me.. well i know provigil is supposed to be safer, but honestly id rather risk some problems with my bp and heart down the road with ritalin if it means i LIVE to be 70, rather than not take it and only SURVIVE until 90
plus the money part, etc
get all your options now then you'll be able to make the best choice

#6 ERINLYN

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Posted 30 April 2009 - 09:31 PM

Thank you for all the posts!

They ended up putting me on the Provigil and also to take the 2 10mg tabs of Ritalin 3 times daily and i found that Provigil is the first medication i am allergic to. Stuff gave me a fine pinpoint rash almost head to toe.

So Im back on the Ritalin 20mg 3 times a day and concerta 54mg. I really dont find it that helpful Seems the ritalin only lasts like 3hrs not 4-6 and im still looking for things to get me through the day which lately has meant pop that I was off of.

After I move in the next week or so here Im going to ask the doc to let me try the Adderall.

#7 sleepless sleeper

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Posted 01 May 2009 - 02:18 PM

fyi: AMPHETS can and do cause crazy physiological problems...

for me, dextroamphetamine has proven to cause MS like symptoms and according to one of my doctors, not a sleep specialist but a researcher of top notch quality, can cause body temperature regulation problems.

Probably most people don't have this problem. I'm usually the odd ball.


#8 dogdreams

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Posted 01 May 2009 - 09:23 PM

Provigil does work for some and not for others. Everyone seems to have different side effects, too. I only got headaches for the 1st week. After that it worked well for me so long as I didn't miss a dose. For some reason, if I missed one dose, I'd have to take it for a week for it to work again. But keep in mind this is a highly unusual experience and I'm the only one I know that had that problem. The alertness did feel more 'natural' than CNS stims, but of course it still felt like taking meds, not the real thing. Still, it's worth a try. You won't know if it works until you try it. One of the problems with N is that everyone has different mixtures of symptoms and different reactions to meds. There's no "one size fits all" way of treating N, which drives dr's mad. lol

#9 ulooktired

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Posted 01 May 2009 - 10:59 PM

QUOTE (Henry G @ Feb 15 2009, 05:30 PM) <{POST_SNAPBACK}>
Try it out.

With me Provigil started very well but then started become increasingly problematic.

Problem with Provigil as opposed to Ritalin say. Is that it acts for a long time, over 7 hours. There is no way to modulate it, if you take 1/2 it may not work at all. So it's either a big bang or zero.

I personally like Ritalin and Amphetamines because I take it as needed - they are short acting. Sometimes I would even take 1/4 of a pill because that was all I really needed.

Provigil seems to work with a threshold, for it to work - you need to take a sufficient quantity so it can fire up inside

I am of the belief Provigil should be kept only for emergencies. Like a very important long-day meeting or a marriage. Take it every day and undoubtedly it will lose it's effectiveness over time.

I think save it for emergencies too and that's when it works best- when you only use it every once in a while.

#10 sunrisemoon

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Posted 01 May 2009 - 11:42 PM

I'm the same as Henry with regard to what works best for me - good 'ole amphetamines. Provigil (modafinil here in Australia) did awful things to me and I had to stop taking it after 4 days. The doc said I had the worst reaction to it that he'd seen (yay me!). The good thing is it was only a trial, to see how it worked. Since it didn't work for me, I went straight back to my Govt prescribed speed. tongue.gif

I'm on dexamphetamine and that's really the only thing that does make a difference for me. I had a choice between that and Ritalin and I chose the dex, because of the different way it works. The doses aren't addictive - you'd have to take about 220 pills in a day to create the same effect as speed one would buy on the streets.

That said, Provigil seems to work really well for a lot of people, which shows this whole N thing can't be fixed with a 'one size fits all' solution, because different things work for different people....probably part the reason why there's so much misinformation out there, too.

#11 sleepless sleeper

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Posted 06 May 2009 - 02:40 AM

QUOTE (sunrisemoon @ May 1 2009, 10:42 PM) <{POST_SNAPBACK}>
The doses aren't addictive - you'd have to take about 220 pills in a day to create the same effect as speed one would buy on the streets.


I don't know what dex your taking, but ...
haven't had much street drugs, have ya? me neither, but lab made speed is purer than what's made on the street. maybe its the whole "which way does your toilet flush" discussion: maybe making dex on the other side of the world reverses its affect.

Do you have any idea what our pills would sell for on the street? Some serious coin.

I actually took 10 mg on sat. and then again on sun. that little dose worked. it never has except for the first few times, but i haven't had any for the past 1 1/2 to 2 months. yes, this is some serious addictive stuff.

I don't usually advertise that i take these type meds because i like for my home to not be a target for med break in.

#12 sunrisemoon

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Posted 06 May 2009 - 03:25 AM

QUOTE (sleepless sleeper @ May 6 2009, 05:40 PM) <{POST_SNAPBACK}>
I don't know what dex your taking, but ...
haven't had much street drugs, have ya? me neither, but lab made speed is purer than what's made on the street. maybe its the whole "which way does your toilet flush" discussion: maybe making dex on the other side of the world reverses its affect.

Do you have any idea what our pills would sell for on the street? Some serious coin.

I actually took 10 mg on sat. and then again on sun. that little dose worked. it never has except for the first few times, but i haven't had any for the past 1 1/2 to 2 months. yes, this is some serious addictive stuff.

I don't usually advertise that i take these type meds because i like for my home to not be a target for med break in.
One should never assume the experiences (or lack of) of another person. Actually, I had (had) more than one friend who used, bought and sold street drugs, so I know a bit about this. Yes, I know what I could sell my pills for. And I've spoken to doctors about this, too. I'm not the type to repeat information without doing my research on it first.

I do take offence at the comment about dex having the reverse effect here, especially because it's the only thing that works for me.

#13 sleepless sleeper

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Posted 06 May 2009 - 09:53 AM

I am sincerely sorry.

One should never assume the experiences (or lack of) of another person.

Absolutely right. That is the common thread found here - the diversity of doctor and med and symptom experiences. I spoke from my experience about me. It is a drug that my body builds a tolerance to. You're right. I assumed that people as a whole built a tolerance to this drug. That was my bad. I went off what I have been told, read, heard from others that use it, and my experience. BUT, I did not stop to think about that there could be others that did not fall into that category. My experience with Provigil, for example, is so very different from what others experience. I should have known better.

I do take offence at the comment about dex having the reverse effect here,

The toilet flushing reference was based off a comment that has been made here, which I thought was between you and someone else. The person that I thought was you thought that it was funny then. I would not have even thought of it if I had not read it because I had never heard that expression before. I'm sorry. I really thought that it was you because it was a person from, I thought, Australia. I just went to your page to see if it was you, but I had a hard time focusing on what I was reading.

especially because it's the only thing that works for me.
Me too.

And I've spoken to doctors about this, too. I'm not the type to repeat information without doing my research on it first.
Well, it seems that doctors everywhere, even just here within the US, have different opinions, but that is a hot topic in and of itself. Hopefully as more research is done, the neurological playing field will be leveled. I think that you'll find that most posters here have all done quite a bit of research. One thing that's in common is that we all realize that medical opinions are quite diverse, or in some cases, some doctors are real bozos when it comes to N. Others are quite wonderful and a fount of knowledge.

Actually, I had (had) more than one friend who used, bought and sold street drugs, so I know a bit about this. Yes, I know what I could sell my pills for.
This info was published and gave street value for drugs in the US. It was a joke, however, I have had it brought up that I shouldn't discuss what drugs that I had in the house because of break ins. I thought that it was helpful info because it was something that I had never thought of. I thought that I was being helpful by passing it on. Drug use is bad here. I guess it is most places. Actually, it kind of scared me to think of people like that breaking in.

#14 Lais02

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Posted 06 May 2009 - 03:15 PM

QUOTE (sleepless sleeper @ May 6 2009, 07:53 AM) <{POST_SNAPBACK}>
That is the common thread found here - the diversity of doctor and med and symptom experiences. I spoke from my experience about me. It is a drug that my body builds a tolerance to.


I think it is common to build a tolerance to some of the meds we take. Some people take drug holidays to try to lessen building a tolerance. I don't take dex everyday, and I think that helps to keep it working for me.




#15 malachi777

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Posted 07 May 2009 - 06:31 PM

I tried Provigil and it gave me bad headaches. I am not able to take amphetamines due to a short circuit in my heart, so I have settled for cocaine, since it gives me a quick rush..........I meant sugar cane blink.gif ....I do not use drugs, other than ones that are prescribed to me... Did I tell you I have a short circuit in my brain too. This reply pretty much proves it.

#16 sunrisemoon

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Posted 07 May 2009 - 10:07 PM

QUOTE (malachi777 @ May 8 2009, 09:31 AM) <{POST_SNAPBACK}>
I tried Provigil and it gave me bad headaches. I am not able to take amphetamines due to a short circuit in my heart, so I have settled for cocaine, since it gives me a quick rush..........I meant sugar cane blink.gif ....I do not use drugs, other than ones that are prescribed to me... Did I tell you I have a short circuit in my brain too. This reply pretty much proves it.
It's not a short circuit in your case...just creative rewiring. tongue.gif (Speaking of such things, had my Echo today. They said everything is normal (except for some minor stuff), which means they've been telling me garbage and making me worry over nothing for the last 9 years!)

#17 Henry G

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Posted 08 May 2009 - 04:16 AM

QUOTE (Lais02 @ May 6 2009, 09:15 PM) <{POST_SNAPBACK}>
I think it is common to build a tolerance to some of the meds we take. Some people take drug holidays to try to lessen building a tolerance. I don't take dex everyday, and I think that helps to keep it working for me.


I think it's a bit more sinister than that.

Sorry to be gloomy - but hate this thing in me that I will say it whether pleasing or not ....

I think that ALL medicines accumulate and exarcebate a problem in our system.

NOW .. this is a hunch, a big one - like I am almost 99% sure.

I had nocturnal spams - hypnagogic ones - it suddenly happened out of the blue and it became difficult for it to disappear.

Now - I was prescribed generic Ritalin in the UK.

Which I hated. Seriously. All sorts of problems. And boy - that one is addictive.

Addictive is a strong word - but call it fast-tolerance-building

(I will reserve the word addiction to something that completely possesses you, takes control of your life, you take the stuff cos the stuff wants you to take it - more and more and more till you feel you'll die)

ok

But - here is the ODD thing.

My hypnagogic spams began reducing.

So what does that say?

That that wonderful Novartis patented-Ritalin and all - is not that wonderful after all - it could well possibly be the precursor to my hypnagogic spams ...

Then by sheer coincidence - I found one box of Novartis Ritalin hidden in the attic.

So started taking that instead of the other one ..

And guess what?

The spasms started to slowly creep back!

Conclusion. Nearly 7 years of taking Ritalin from Novartis - *could* be the eventual cause of my hypnagogic spams.

Now need to be triple sure.

And so the only one way to find out - will be to stick to the Generic Ritalin and observe if the spasms begin very very slowly decreasing once again or not.

With meds or drugs - damn, you can never win totally, it's all some uncomfortable compromise.

Which is why I strongly advocate - as many different types of meds and rotate.

By varying the medicine regime, you stop the body from getting too used to one thing and also accumulating specific toxins and by-products.

LASTLY ..........

Wish there was a lot of research and study into this. Proud to see so many N people studying Medicine and all.

But would be cool if also strategies and techniques were devised to diminish the accumulate effects of each particular medicine. So say if taking Ritalin daily - then take more Selenium (just a guess obviously) .. If Taking Provigil - eat more bananas cos of Potassium ,, something like that

#18 sleepless sleeper

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Posted 08 May 2009 - 01:39 PM

I agree with you Henry. With everything. Thanks.

You're always my knight in shining armor.

#19 sleepless sleeper

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Posted 10 May 2009 - 07:23 PM

Here is some info on Dextroamphetamine. I thought that it may be of use because a lot of us have questions about it:

http://en.wikipedia....xtroamphetamine

#20 Bafflegab

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Posted 13 October 2009 - 08:00 AM

Erowid is the single best source of information on stimulants I've seen: www.erowid.org/chemicals/amphetamines/