Adderall XL

[KarenLorrel]

Dr. Grubb suggested Adderall XL and I have been using a very small dosage for about 3 months. It has been very helpful. Does anyone else have experience taking Adderall L?

Thanks,

Lorrell

[POTSparent]

Yes, my daughter has used Adderall XL for the last 6-mos and it has made a marked improvement in her treatment. The beta blocker strategy (Toprol XL, Nadolol, etc) wasn't working, and in fact, probably had made things worse by increasing the fatigue factor.

My understanding is that Adderall acts to constrict the blood vessels to force the blood flow away from the extremities where it tends to pool and get it back to the central organs area. The pooling of the blood in the extremities (which is why you see so much talk about compression hose) is exactly what prompts the dizziness, lightheadedness, chest pains, etc.

Much to my surprise, though Adderall is essentially legalized speed, it got rid of some of the worst symptoms while not causing palpitations or pulse rate to become the new problem. Adderall is the same stuff given to Attention Deficit Disorder (ADD) patients, but you're probably getting a lower dose.

By the way, if the long-acting XL isn't quite getting you fully through your day, the short-acting Adderall (no XL) has a "life span" of just 4-hrs. My daughter takes the XL around 6am, and then a small dose of regular Adderall around 4pm. No impact on sleeping schedule (except maybe the very first day she took it).

Again, we've been real happy with the "reverse course" of getting rid of the beta blockers totally in favor of the Adderall XL approach. We're crossing our fingers that we're equally happy in the months ahead. Good luck to you!

[KarenLorrel]

Dear Potsparent...

Thanks for your input...I have the wrong kind of collagen holding my veins together so they will not constrict enough to push the blood back up towards the hear so the Adderall has been a great vascular constrictor.

It has been great. I am so glad your daughter has done well too.

I will talk to Dr. Grubb about the Adderall (not XL) for the rest of the day.

How much does your daughter take? I am so sensitive to medication...I don't know what is considered a 'normal' dosage.

Again, thank you for the information,

Lorrell

[POTSparent]

The "late afternoon" Adderall dosage is 10mg -- one pill. If she's planning on crashing early for one reason or another (e.g., early morning plans), then she might skip it that day. But as long as she's not going to bed until 10pm or so anyway, this dosage helps extend her day (without the overwhelming fatigue factor). Glad to hear the XL has been working for you. I don't think many people have this within their dysautonomia medicine strategy, but it has certainly been a good call by the doctor for our daughter.

[MightyMouse]

My friend Christy takes adderall and says it really helps here. Worth a shot. Nina

[KarenLorrel]

Hi Potsparent...thanks for the dosage information this will be helpful. How much does she take in the morning? I take 20 mg of the extended release and am not sure if this is considered a lot or not. Do you mind sharing how much she takes in the morning?

Thank you!

Lorrell

[POTSparent]

Lorrell: No problem. Probably should have mentioned it the first go-round. She takes 30mg of the extended release in the morning.

[Patricia]

Can anyone on Adderall say if it asks as a "speed" and then when it wears off you feel as you did before the Adderall, or does your overall condition improve generally consistently?

Thanks,

Patricia

[KarenLorrel]

Patricia,

have not experience the 'let down' feeling as if on speed. It seems to let my body act almost normally...I am almost afraid to say that..but it is true. I don't wake up in the morning feeling I 'need' it. I was a bit of a chatter box the first week I ws on it but not now.

I can even nap using it..if I want too. So far, it is given me back a quality of life that I have not had.

I still have blood pressure ups and downs but I had that before but I have less instances of rapid heart beat then when I tried; Wellbutrin, provigil, and symmetrel. I have been trying a lot of different treatment protocals for a while and this has been almost too good to be true.

Sleeping had been a problem until Dr. Grubb gave me Prosom.

I work with a personal trainer..Pilates to start reconditioning whicn has been VERY difficult but helping.

FYI...

I also take B-12 shots (a compounded form) into the muscle each day prior to starting the Adderall which cleared the brain fog and took away the overall aches and pains. (I had read about this treatment by a dr. Cheney who deals with CFS and my family doctor, at the time, agreed to try. It had been very effective.

I tell you all this to help give you the bigger picture...perhaps not just one drug..a combination treatment plant that is helping me. I work 3 hours a day ...I would like to try working a full day but as you probably are aware we'Type A' personalities always think we can 'do more.' So, I am resisting the urge to work more and see how long this treatment plan will work.

So,long answer to the 'speed' effect. I hope this is somewhat helpful.

Lorrell

[Patricia]

Thanks Lorrell.

I have had speed-like affects from Midodrine and some of the SSRI's; also Mestinon. Then I crash VERY hard when it wears off. I too have Chronic Fatigue Syndrome and wondered if that was the culprit versus just having dysautonomia.

I will bring it up with my doctor.

Thanks!

Patricia

[Lisa R]

Everyone,

I just started Adderall XL today, so I am so pleased to read all of the positive feedback! Dr. Grubb had also suggested it. I had been frustrated with the Proamatine -- after 2 or 3 hours it would wear off and I was taking 15 mg 4 or 5 times a day. Just in the one day taking the Adderall I've noticed a big improvement. I may need to adjust the dose -- taking 10 mg now -- but at least I'm feeling consistently pretty good without the ups and downs all day. I'm still taking 12.5 mg Atenolol and 50 mg Zoloft. Dr. Grubb told me to keep the Proamatine with me at all times just in case, and he suggested I take it in the evening when the Adderall wears off, especially if I have some evening obligations. But so far so good!

Lisa

[POTSparent]

As reported by my daughter, no letdown or "need" for the Adderall. Similar to Lorrell's reply, it simply has helped her obtain a better quality of life. She can nap, if desired, as the only problem sleeping was pretty much the very first evening or two on the medicine. About the only "stimulant" type effect was that it did result in her dropping about 10-lbs due to a reduced appetite, but that leveled off and she didn't lose any further weight. Also, even though she didn't recognize previously any problems in her ability to "focus", she felt that her ability to focus on the tasks at hand had indeed increased somewhat. To anyone who feels that CFS or excessive fatigue is one of the most troubling aspects of their dysautonomia, then I'd recommend that they at least talk to their doctor about Adderall. But remember, while one should be careful with all medicines, this is a controlled substance so it should be handled with even more care.

[goldicedance]

I take Ritalin when I am very fatigued. I take the short acting Ritalin. I didn't like the extended release--I didn't get as good results. The Ritalin really seems to help beat brain fog in the morning. That does seem to give me a burst of energy, no horrible let down effect, and helps control Migraines as well.

[KarenLorrel]

Lisa R, I am so glad you hear that the Adderall XR is working for you..it has changed my life. I feel very normal again...well almost 'normal.' I have had to adjust dosages in order to help me extend my activity into the evening hours which is helpful to my husband. Dr. Grubb...just adjusted it to 25 mg in the morning of the extended release. It has help give me a full day...and does not interfere with my sleep. He said this is still a very low dosage...usually starting is 40mg....anyway, I am so glad you are doing better!

Take care!

Karen "Lorrel"

[POTSHusband]

How long did it take to see results? My wife has been on it for about 3 weeks and it has helped some but not a significant amount. The first few days it seemed to give her a lot more energy, but now she is back to being tired all of the time.

[KarenLorrel]

I noticed results within 2 days. Is your wife on extended release Adderall?

Dr. Grubb explained to me that the dosage has to be adjusted depending on how fast your body compounds/uses the medicine. You may want to talk to your doctor about giving her a bigger dosage or trying dosages throughout the day. Dr. Grubb wanted to try bigger with me so I wouldn't have the inconvience of having to take pills throughout the day.

I hope you wife finds a drug that works with her body.

I don't know where you are located but I heard an excellent doctor speak today and he was very kind and compassionate...he is from Virginia..Dr. Aballah...if that is closer for you...I will give you his number. I spoke with him for a few minutes and was impressed with his concern and desire to help people.

[POTSHusband]

She is not on the extended release, but she is only taking 5mg twice a day. It seems that others that have tried it are on much larger doses. Has anyone tried both extended and not? I wonder which works better. Unfortunately, we are on the west coast so that doctor wouldn't help. We haven't been able to find any doctors that have experience with this illness. I just basically take research to her doctor and ask if we can try stuff that you guys have tried.

[KarenLorrel]

Hi...I have tried both extended and regular Adderall...I started on 5mg extended release and dr. Grubb...said, "It would do anything." It was my idea to start so low...I was tentative about medications. After it was increased to 20 mg...I starting having longer days. He recently increased it to 25 mg extended release and I have a full day. He said we could add a regular on mid day to help give me a full day..if necessary or keep increasing the dosage because, as I mentioned before, Dr. Grubb said, the usually starting dosage is 40 mg.

I hope you and your wife find a doctor to help you....I have a lot of empathy for both of you.....it is a perplexing a difficult condition..and everyones body responds in different ways.

I have been on many, many, different drug treatment plans for 4 years. Adderall XR is the first drug that has worked for me...again, everyone is different.

Don't give up!

God Bless.

[POTSparent]

POTShusband: 5mg twice a day sounds like a low "starting" dosage to make sure that your wife doesn't experience any ill-effects. While everyone is different, and certainly you need your doctor's "buy-in" on this, I would think a higher dosage would be needed to make any real difference. My daughter takes 30mg of the extended release in the mornings and has done so for 7-mos after a short 30-day intentional ramp up through the 10mg and 20mg dosages. Further, if she has activities through the evening, she takes 10mg short-acting (4-hrs). If she doesn't have anything going on that evening, she might opt to pass on the afternoon dosage and does not experience any "need" for the medicine. Gone now for these last several months is the excessive fatigue she was experiencing from her POTS. I was a bit apprehensive going in relative to the use of Adderall, but the proof is in the results. The only downside was about the first two days with trouble sleeping, but that went away. She can even take a nap if she wants to without problem. It's just now, if she lays down for a few minutes, it's because she "wants to" and not because she "has to".