Methylphenidate Er

[gdomaracki]

Hello All,

It has been awhile since I have posted last. I have had POTS for almost four years now. I was feeling almost completely better up until June when I started having attacks every week and have been symptomatic ever since. I decided that it was time to see a new doctor, and visited Dr. Goodkin today for the first time. Along with having POTS, he believes that I also have Chronic Fatigue Syndrome and that we need to address this issue. However, I'm really skeptical about the medication he has prescribed me because of the negative side effects and because I have anxiety. He suggests that I start taking Methylphenidate aka Ridalin 20mg ER once a day, and then try twice a day. If I start to feel jittery I am to stop taking immediately. I'm kind of scared because i have alot of anxiety as it is and am current learning to deal with it without xanax. I also have problems with tachycardia, palps, etc...

Will this medication make me feel more anxious?

What other side effect have you experienced from this medication?

What are your general ideas on this stimulant?

Thank you for your imput and advice!

PS. I current take midodrine, florinef, and zoloft.

[ajw4790]

Hi,

I tried Ritalin and about every other stimulant. None really ever proved to help me. Side effects with all of them that made me stop taking them. For many of them I was a super-insomniac (very little to no sleep for a week). Many of them also greatly worsened my acid reflux to the point of not wanting to eat, kept me from sleeping, just awful. Ritalin, if I remember right was different. I did not have the above effects, but slept a ton, and was a zombie when I was awake.

Everyone is different and I am supersensitive to meds. So, I do not have a "normal" experience with trying these meds.

You won't know what does and does not work until you try it. Even after a few bad trials with stimulants, I still tried the next one in line to see if it might work. So, I am not trying to discourage you from trying it if your drs. think it could be helpful.

Good luck with it and let us know how it goes!

[shoe]

Hi,

I agree with ajw4005 -- everyone reacts to stuff differently, and I think stimulants are some of the doozies in terms of range. I take Concerta ER 54 mg in the morning and 3 doses of 10 mg Ritalin. Basically they're all a form of methylphenidate, they just attach to different receptors so have different arcs of effects. Here's why I take what I do: The Concerta is methylphenidate HCL (a longer acting, slower release form of Ritalin). I get up, and if I weren't to take my meds in 20-25 min., not only would I have to lie down, I wouldn't even need a convenient bed. The floor would do. (Oddly, it's not a tired thing -- I could sleep, but more I need to lie there with my eyes closed.)

The longer acting (ERs, XRs) I found didn't really have a good "wake up" effect on their own. The plus is that they're slower release, and less of a tendency to crash you out. So my sleep doctor (a neurologist certified w/sleep medicine) said to take 10 mg of Ritalin w/the Concerta, then 10 mg in the early afternoon, with the last 10 mg to not be taken later than 2 pm. (Many people have disrupted sleep. I can actually fall asleep if I'm really doing awful right after a Ritalin dose. I found I sleep slightly better with it, because I'm able to spend less time in bed during the day). The idea is that while the Concerta kicks in, the Ritalin gets me feeling all right faster... and the background of Concerta keeps any "wearing off" crashes at bay.

Now... my understanding is I'm taking a colossal dose. To the point that I've had a few doctors, when I tell them what I'm taking, say, "Why aren't I peeling you off the ceiling?" There are a few drugs that have really had a hugely positive impact on my life -- the stimulants are one of them. They can cause heart racing (I find it can slow it, too... I do not react well to overtired), anxiety... I've just found they've given me a shot at a few more functional minutes a day.

I'm not sure how well they're supposed to work with chronic fatigue/CFIDS type stuff. I've heard it can make people with it further behind the eight ball, but again, there's a wide range of reactions to medication like that and CFIDS is a pretty unexplored territory at best.

I've had a good experience with the stuff, personally. I'm not anywhere near where I should be, but it gets me closer, and I haven't had any real ill effects. If you decide to give it a try, start slow, hopefully on a day when someone else is around to make sure nothing odd happens. I think non-sleep (or psych) doctors have a slightly irrational take on how powerful or far reaching these sorts of meds are. Taken as directed (and paying attention to how it effects you) they're pretty safe and don't stay in your system too terribly long.

I'd give it a try. If it's a generic, it's probably a cheap enough rx to fill, and if the first day or two doesn't pan out (you'll know that quickly), then you'll know it probably isn't the right thing for you to be taking.

[ramakentesh]

I love how doctors talk about the entity of chronic fatigue syndrome like they understand it well. They understand very little if anything about chronic fatigue and ultimately recent unpublished data suggests that it may all come back to blood flow and inflammation even in CFS patients.

Your fatigue is most likely the result of POTS - all POTS patients have fatigue - and most POTS patients usually have a list of bizarre symptoms that do not seem to specifically relate to orthostatic blood flow issues, whethre they are swollen lymph nodes, sore throats, achy joints, vitreous floaters and a host of other issues.

They dont understand enough about POTS yet to make clear cut statements about where it ends and where CFS supposedly starts. its all guess work. If it wasnt the medications they routinely prescribe for POTS would be better than only partially palliative at best.

My advice, if you suffer from anxiety related symptoms from POTS I tend to doubt that this medication will improve your symptoms - your fatigue is likely from reduced cerebral perfusion (blood flow to the brain) and in some forms of POTS this appears to be the result of the hyperadrenergic states - get more wound up and you will possibly get more vasoconstricted.

How does coffee effect your symptoms?

[gdomaracki]

I actually never drink coffee or anything with caffenine because it supposedly makes tachycardia and palps worse. And doesn't help with the anxiety. I've actually had anxiety disorder for a long time, but of course the POTS makes it worse. I've never been a fan of stimulants because of my anxiety disorder and am not sure what to do. :/

If the Ritalin makes me sleep less, is it going to make my POTS worse?

I also crash every afternoon, so I take a nap to help give me energy and feel better. If I don't, I will get a bad migraine in the evening.

Do you think that the migraines are from the reduced cerebral perfusion?

Will the Ritalin affect me being able to nap in the afternoon?

Thank you all for your wonderful advice!

What makes this decision extra hard is that I've gotta start teaching preschool in a week, and don't want any negative side effects to make me feel bad so that I can't do my job.

[Guest tearose]

Could you try a test of a caffeine tablet cut into quarters? You could control the dose of this safer OTC stimulant and see what happens.

I have hyperadrenergic POTS and lymphedema so no RX drugs for me. I use careful doses of caffeine only as needed.

I also use compression garments...they enhance and preserve my daily functioning of life!

We are all so different so, look carefully at the history of any new drug, the potential benefits or harm on your particular body and then make your decision knowing the benefits and consequences.

best regards,

tearose

[potsgirl]

I agree with Ramakentesh that the fatigue you're dealing with is mainly associated with your POTS. As far as I understand it, CFS is only diagnosed if nothing else can be causing your fatigue, and POTS certainly does that and does it well.

In my opinion, a lack of sleep will almost certainly make your POTS worse and make you feel even more fatigued and 'brain fogged'. Migraines are another common symptom of POTS, and yes, you will in all likelihood have more headaches/migraines with lack of sleep and if your POTS is exacerbated by the Ritalin.

If you'd like to try the Ritalin, I think (if it were me) that I would wait until you have a bigger window of time before you have to be 'on' and feeling the best you can, before you start teaching. Perhaps the winter break? Or try a tiny dose and see what it does...Personally, I don't think I'd mess with it, but that's your decision to make.

Wishing you the best,

Jana

[toddm1960]

I'm orthostatic hypertensive and I have extrem exhaustion, my doctors tried Ritalin and all it did was make me very jittery and shaky. When my stomach can take it I use small amounts of coffee in the morning or afternoon, by the way I'm a lunchtime napper also. It's the only way I can make it through afternoons at work. Try new meds when you have some time away from work, vacation or long weekends. Things that help half of us, make the other half worse. Good luck and let us know how things come out for you.