Have stimulants (methylphenidate, etc) helped your orthostatic intolerance?

[POTSius]

I have read many accounts on this forum of positive results with stimulants like methylphenidate, in terms of helping things like fatigue and brainfog.

But I haven't really seen many reports that say that it has particularly helped their orthostatic intolerance, including things like presyncope.

If you are taking stimulants, do you feel it helps your orthostatic intolerance as well as fatigue/brainfrog?

[RecipeForDisaster]

I feel somewhat better when I take as little as 2.5mg adderall. 5mg is better. I have better BP readings and exercise tolerance and definitely am less orthostatic.

[Pistol]

@POTSius - I take 5 mg Ritalin in the morning and it helps me be more alert, have less fatigue and enables me to be active and exercise. This helps with the orthostatic intolerance, helps with circulation, balances HR and BP etc. So - it does improve many of my POTS symptoms but only indirect. The direct effects from it are improved attention, increase in energy and less fatigue.  

[Sushi]

@POTSius When I was taking a low dose of Adderall it did help me with OI. I no longer take it because I have moved and don’t have a doctor to prescribe it.

[RecipeForDisaster]

I can’t get a prior authorization which is why I don’t take it regularly - I have a script but it’s too expensive without it. 

[POTSius]

Thanks for the helpful answers

@Sushi @RecipeForDisaster (and anyone else with experience coming off these drugs)

Did you notice any sort of withdrawal issues coming off the meds when you had to stop them?

 

[RecipeForDisaster]

No, but I only took mine 6 days per week, and I now take it as needed. I have quite a bit on hand from when I realized I wouldn’t pay to take it daily.

[PotSdealer]

 

On 7/27/2020 at 7:36 PM, Pistol said:

@POTSius - I take 5 mg Ritalin in the morning and it helps me be more alert, have less fatigue and enables me to be active and exercise. This helps with the orthostatic intolerance, helps with circulation, balances HR and BP etc. So - it does improve many of my POTS symptoms but only indirect. The direct effects from it are improved attention, increase in energy and less fatigue.  

 

On 7/27/2020 at 4:16 PM, RecipeForDisaster said:

I feel somewhat better when I take as little as 2.5mg adderall. 5mg is better. I have better BP readings and exercise tolerance and definitely am less orthostatic.

Jumping in here folks. Are you saying this low does of ritalin actually lowers your bp and HR readings? I have found the same with a low dose of caffeine throughout the day but it seems as if this is counterintuitive to hyper forms of OI/pots. 

 

1 hour ago, POTSius said:

Thanks for the helpful answers

@Sushi @RecipeForDisaster (and anyone else with experience coming off these drugs)

Did you notice any sort of withdrawal issues coming off the meds when you had to stop them?

 

@potsius I did not notice my symptoms until I withdrew off of a low dose of ritalin, and high amounts of caffeine. Doctors are perplexed as these usually "speed you up" but I was flatline low when I was taking 5-10mg of ritalin in the am, 5-10 mg mid-day. Haven't tried it since, too afraid. 

 

[POTSius]

5 minutes ago, PotSdealer said:

 

 

Jumping in here folks. Are you saying this low does of ritalin actually lowers your bp and HR readings? I have found the same with a low dose of caffeine throughout the day but it seems as if this is counterintuitive to hyper forms of OI/pots. 

 

@potsius I did not notice my symptoms until I withdrew off of a low dose of ritalin, and high amounts of caffeine. Doctors are perplexed as these usually "speed you up" but I was flatline low when I was taking 5-10mg of ritalin in the am, 5-10 mg mid-day. Haven't tried it since, too afraid. 

 

Thanks for the info, but I am a bit confused

Are you saying that your POTS symptoms only started after you stopped the caffeine and ritalin? How long had you been on both of these?

Is it possible you already had POTS and these two things were helping you so that you did not notice it?

[PotSdealer]

13 minutes ago, POTSius said:

Thanks for the info, but I am a bit confused

Are you saying that your POTS symptoms only started after you stopped the caffeine and ritalin? How long had you been on both of these?

Is it possible you already had POTS and these two things were helping you so that you did not notice it?

I am confused as well. Yeah, my symptoms started when I stopped both of them at the same time. Ritalin (10-20 mg a day), for around 2 years, been a certified coffee fiend for around 10. I also had a pretty much all day drip of diet iced-tea. 

It may have been possible? It is one of my theories, but anything with Dysautonmia it is super super hard to tell. I had a super stressful episode that coincided with "the withdraw"... I thought I was getting covid. So I stopped these both cold turkey.. I am in super good shape, low carb and have never been dehydrated in years. WAS in super good mental/physical shape.  Never had any type of reaction like that before and I surely have stopped them for a day or two at a time.  Could have added to the stress? Did the stress cause it in a PTSD type ? Did I have it previously? Did I down regulate my NET transporters enough to do some epigenetic mutation? Is that even possible? No clue. 

[Sushi]

2 hours ago, POTSius said:

Thanks for the helpful answers

@Sushi @RecipeForDisaster (and anyone else with experience coming off these drugs)

Did you notice any sort of withdrawal issues coming off the meds when you had to stop them?

 

I wouldn’t call it withdrawal but yes, it didn’t feel great when the dose was wearing off, but that was only for a couple of hours. I never took more than 5 mg and usually mor like 2.5 mg.

[RecipeForDisaster]

I don’t have hyper POTS and have very low BP - "better" for me is higher, towards 80/60 if I can! I don’t find much effect on my HR from adderall. Maybe it’s a little lower if I’m doing better, but I’m on a beta blocker anyway. 
 

So, when I take a dose of Adderall, I’m less orthostatic, better able to exercise, and my BP is higher/healthier.

[Pistol]

5 hours ago, RecipeForDisaster said:

So, when I take a dose of Adderall, I’m less orthostatic, better able to exercise, and my BP is higher/healthier.

@PotSdealer - same for me with Ritalin. To answer your question: No, I have not noticed my BP being lower from Ritalin. 

[Hippopotsamus]

@Pistoldoes the methylphenidate increase your heart rate or cause anxiety? Are you on a beta blocker too? I’m on metoprolol which helps my POTS and I am having a eureka couple of days researching ADHD and realizing I’ve had it all along and it explains so much! I used to drink coffee and it used to calm me down but since POTS it gives me chest pain and anxiety. Wondering if all stimulants will do this or if it is a caffeine metabolism thing. 

[RecipeForDisaster]

I don’t tolerate very much caffeine, but I haven’t had trouble with heart rate or anxiety with adderall. I am also on 2 different beta blockers (one at night and one in the morning). 

[Pistol]

9 hours ago, Hippopotsamus said:

does the methylphenidate increase your heart rate or cause anxiety? Are you on a beta blocker too?

Yes, @Hippopotsamus, I am on Carvelidol ( beta blocker ). The methylphenidate does not seem to have any interactions. And no, methylphenidate does not at all affect my HR or BP. It is very short-lived, and I only take it in the mornings. I have a bunch of energy in the am and do my chores until about 11 am, then I peter out. I can take it twice a day but never do. 

I too was diagnosed with ADHD, and so are all my brothers and sisters. HPOTS runs in the last 3 generations of my family, so I am not sure if it is related. 

[Hippopotsamus]

@Pistol& @RecipeForDisasterthanks so much for the replies. My brother was diagnosed as a child because he was also hyperactive. But after reading about how it presents in females I realize that both my mother and myself have it. 

[Pistol]

@Hippopotsamus - many years ago I had a concussion after one of my seizures and the brain fog from POTS was very bad. I had a neuropsychological evaluation to see if there were any permanent cognitive deficits from the chronic low oxygen to the brain. The test took 3 hours and the psychologist diagnosed me with ADHD. I had NEVER thought about that before but she pointed out several things in my history that proved that I had it since early childhood. She also said that certain aspects of my psyche showed how much i had been compensating all along for the difficulties that ADHD can cause, to the degree that certain mental abilities are superior and others deficient. 

The most important advice on how to deal with ADHD was to stick with ONE activity at a time. I used to be highly multifunctional, which was very handy in my profession. After becoming disabled from POTS this ability shrank into nonexistence! Any interruptions or changes from my focus immediately resulted in an adrenaline surge with all the usual fixings. But I took her advice to heart and try to stick with just one thing at a time, and it helps. We POTS patients ( and ADHD patients ) are so easily overwhelmed that sticking with one task at a time can help a lot of us! 

I hope the Methylphenidate helps you, it does help me and I have zero side effects. 

[RecipeForDisaster]

10 hours ago, Hippopotsamus said:

@Pistol& @RecipeForDisasterthanks so much for the replies. My brother was diagnosed as a child because he was also hyperactive. But after reading about how it presents in females I realize that both my mother and myself have it. 

You’re very welcome! I don’t know that I have it, but my parents do. Adderall just makes me a bit more functional on little sleep and low blood pressures. But I don’t have a prior authorization for it, so I have to pay full price, and I use it very sparingly. That stinks because it helps.