Meds to address brain fog/attention Issues

[Sam1]

I'm currently working on a PhD, which requires an astronomical amount of reading/research.  In addition, am in the middle work working on a diagnosis to figure out what is causing my issues.  Symptoms pretty much match up with POTS, but I will leave that determination up to the doctors.

What I am concerned about is that when the "funk" comes on, it is almost impossible to read and retain the information without re-reading it.  I read that some of the meds like Provigil or Ritalin are sometimes used in patients to combat both the exhaustion and inability to focus.  Is anyone participating in a regimen that involves one of those or a similar med?  My concern with it is obviously that they are amphetamine-like and what will happen to my heart rate.  My normal resting rate is about 60~bpm, when I hit an episode of the funk for a few days or week or whatever, it bounces to 100ish on standing/moving around, but remains at about 60 resting. 

For those of you who (if any) are on that stuff (or any other med that helps concentration), do you experience any negative side effects with your heart rate?  Thought I would ask around here before inquiring with any of my 4,000 doctors that all have their own opinion of what is wrong.

Thanks

[statesof]

Hi Sam, I used to have very bad brain fog issues, I wouldn't say they were concentration based - more like I was in a fog and when I read a chapter of something I couldn't really tell if I was retaining it or not.

For me personally amitriptyline helped my brainfog immensely, almost like it was countering the mechanism that caused my brainfog, that being said I also have significant migraine issues and depersonalization disorder, and amitriptyline was prescribed to me for migraine headaches, not any of my other symptoms, I just got lucky that it helped in more than one area.

I'm still never as clear headed as the normal healthy person but I've found that just reading more has helped my brain get used to it. Sort of like when people start exercising and then over time it gets easier. Oh and amitriptyline can make POTS worse, I have to be on a low does or my head rushes get more prevalent.

[SarahA33]

Hi Sam, you might find this thread helpful:

http://forums.dinet.org/index.php?/topic/27481-cognitive-dysfunction-in-pots/

[Sam1]

TYVM Sarah, I'm going to reach out to the author.  I had no idea the level of importance that Vanderbilt played in autonomic research and am so grateful most of my surgeries and all of my doctors are there.  Have to do something about it - reduced my schooling down to 1 class at a time because it takes so much time just to complete the homework.

[ramakentesh]

Provigil/modafinil helped a little with this but for me pseudoephedrine is superior and it actually lowers my heart rate.

I dont actually agree with vandy on this - i tend to believe there is impaired central norepinephrine activity (which by reciprocal association) causes peripheral norepinephrine overactivity. 

Pots patients generally seem to show evidence of increased norepinephrine with symptoms of hypotension.

[cmep37]

When I was first ill I was given an CFS diagnosis and persuaded my GP to prescribe Modafinil (Provogil) to try to improve my concentration.  I was mostly bedbound and it was the first thing that helped me.  It wasn't so much that it helped my brainfog (although it did) but it seemed to help reduce my level of fatigue.  I never noticed any major effect on my heart rate.  The effects didn't last forever (6 months ish) but they did last long enough for me to start an exercise programme (initially from bed) which helped. 

[Lily]

I am currently on the tenure track, with POTS and ADHD.  I don't take ritalin, because my neurologist knows I get palpitations and so doesn't want to prescribe it.  I take Strattera (and coffee) for ADHD instead.  For POTS brain fog I get the most benefit from working with my feet up on my desk.  And salt/water/compression hose. 

[SarahA33]

Hi, Sam,

Best of luck to you and I hope you will be able to reach out to the professor for further insight. Good luck with your Phd.

If you do have POTS, it seems like you may be fortunate in the sense that you have some of the best doctors in the world at your fingertips who can help you.

Take care,

Sarah

[Sam1]

Thanks again Sarah, Dr. Arnold already responded with some information that I will be relaying to my EP and PCP.  Unfortunately their research is not complete on the modafinil in conjunction with propranolol, so she could not elaborate on that.  And, that there are no existing studies available that evaluate confirmed POTS patients and the use of stimulants as a treatment for cognitive function, so it is a trial and error process between the patient and their doctor.

Time to take the mystery wheel of symptoms and treatments out for another spin!

[SarahA33]

On 4/11/2016 at 7:18 AM, ramakentesh said:

Provigil/modafinil helped a little with this but for me pseudoephedrine is superior and it actually lowers my heart rate.

I dont actually agree with vandy on this - i tend to believe there is impaired central norepinephrine activity (which by reciprocal association) causes peripheral norepinephrine overactivity. 

Pots patients generally seem to show evidence of increased norepinephrine with symptoms of hypotension.

Well it makes sense, prescription and non prescription stimulants are going to have a vasoconstriction effect. My understanding is that they basically work by enhancing dopamine and other neurotransmitters.  I did very well with Provigil in the beginning for about 3 1/2 wks (no tachy), but then recently (in the past week) it started causing insomnia and a feeling of chaos in my mind. I have had very high NE levels (in the 2,000's), so I'm not sure if that may have anything to do with it. 

Glad you have something that works for you Rama. Are those the only things you've tried? Other than a cup  of coffee I'm guessing.  My pots dr. mentioned if Provigil didn't work, we could try nuvigil, I think that's longer acting, so I'm not so enthusiastic.  Take care, Sarah

 

[SarahA33]

22 hours ago, Sam1 said:

Thanks again Sarah, Dr. Arnold already responded with some information that I will be relaying to my EP and PCP.  Unfortunately their research is not complete on the modafinil in conjunction with propranolol, so she could not elaborate on that.  And, that there are no existing studies available that evaluate confirmed POTS patients and the use of stimulants as a treatment for cognitive function, so it is a trial and error process between the patient and their doctor.

Time to take the mystery wheel of symptoms and treatments out for another spin!

Hi, Sam,

I'm so glad Dr. Arnold was able to get back to you! That really is awesome that she's sending along information to your doctors, it really sounds like your headed in the right direction. Yeah, I figured that since the Modafinal/Cognitive function study was still open, she wouldn't be able to talk about that. As I just said above, I just recently had to stop the Provigil (modafinil) mainly due to insomnia and racing thoughts, but I have been on Propranolol for years and also a new HR Lowering Med (Ivabradine) and had no issues with Tachycardia while on it.  Unfortunately, most of the medications are a trial and error process, and it's taken me a while, but I'm on a really good combination. So, it's definitely possible. It's requires adjustments, but I'm just thankful that help is out there.

Good luck to you and I'm glad you've found the forum!

Sarah

[Sam1]

Thanks, after relaying all of the info to one of the awesome nurses at the EP's office they got with the autonomic clinic and they scheduled me for full-blown TTT in 3 weeks.  She said this one will be more intrusive than the basic one they perform on people (not sure what that means).  They said after that they would try to get me in quickly since all of the med records are already at Vandy and the EP has already been in discussion with some of them on the situation.  They really are top-notch over there.

[Sam1]

Lucked out and got bumped to the front of the line at the autoclinic for an actual consult thanks to a cancellation.  Did a TTT last September, EP said nothing was wrong.  Did the simple laying/standing test today and BPM was 60, then standing up it was 90~89~98 no change in BP.  Anyways, doc recommended the usual extra salt, fluids, the medicine that constricts your veins for that.  Gonna give it a shot and report back.

Asked about the meds to address brain fog/attention issues and she didn't seem to want to suggest anything for it, said I need to talk to the PCP on it. She did expressly mention that just about all of those meds stimulate the same system that is causing my issues, so proceed with caution.  She also said that provigil has the least affect on the vagal system, but it is also specifically for narcolepsy, very expensive and insurance would not probably not prescribe it for attention issues.  So I set up an appointment with the PCP next week to discuss other options, and have a message in with the cardiologist about the concerns & if I need to get back on beta blockers because of the need to do something about this... Need to be proactive, would rather test something and it fail than just sit around and hope it gets better.  Would be nice if they classified provigil for additional purposes since there is a generic and there is the potential it can help other issues...

[SarahA33]

Hey Sam,

I was wondering how things were going for you. I understand what your saying about being proactive and trying to find the best treatment possible.  I went through many Beta Blocker's before finding the right one for me.  Maybe this article can help you? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758650/ It's a bit older, but my dr. at CC just told me the same information.

I hope your PCP will be helpful w/ the brainfog meds. It must be so difficult trying to work on your PhD while struggling with these symptoms.  Here is a newer paper written by Dr. Raj, he mentions Provigil (modafinil) , incase your PCP may find it useful. http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html Mine was denied initially, then approved w/ a prior authorization.  Anyway, I hope your upcoming appointments go well! Sarah

[Guest]

I take Vyvanse (similar to Ritalin, but slow release).  It really helps my brain fog (and energy level)) for a few hours after I take it.  Nothing makes me feel normal anymore, but I'm at my best on Vyvanse.  I have ADHD...I'm not sure how easy it is to get a prescription without an ADHD diagnosis.  

Oh, and I have a really erratic heart rate, but Vyvanse does not make it worse.  If anything, it's slightly better on Vyvanse (without a betablocker it's usually in the 90s while at rest, and goes up to the 120s-180s while standing).  

[Sam1]

On 5/7/2016 at 7:36 AM, SarahA33 said:

Hey Sam,

I was wondering how things were going for you. I understand what your saying about being proactive and trying to find the best treatment possible.  I went through many Beta Blocker's before finding the right one for me.  Maybe this article can help you? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758650/ It's a bit older, but my dr. at CC just told me the same information.

I hope your PCP will be helpful w/ the brainfog meds. It must be so difficult trying to work on your PhD while struggling with these symptoms.  Here is a newer paper written by Dr. Raj, he mentions Provigil (modafinil) , incase your PCP may find it useful. http://link.springer.com/article/10.1007/s11910-015-0583-8/fulltext.html Mine was denied initially, then approved w/ a prior authorization.  Anyway, I hope your upcoming appointments go well! Sarah

Schedule with the PCP tomorrow to discuss.  Am not sure if he will refer me to a psychologist or if he is willing to start testing out meds with me.  Thank you for the links

[Sam1]

PCP wants me to try 10mg adderall 2x daily (think this is a lower dose, but will probably start with half that anyways)

Cardiologist said to just monitor my heart rate and let them know if it jumps too high, they would put be on a low dose of atenolol (was on metoprolol last year and it was causing bradys - no fun).

Sent message to the autonomic dr. inquiring on the situation of just starting on midodrine over the weekend and adding this to the environment without having a solid baseline for the midodrine itself.  After my accident some years back, a doctor told me to be cautious with multiple meds because two medications cause three interactions with your body, the interaction of each med, the the interaction of the meds with/against each other.

The cardiologist didn't seem overly concerned about it after reading through the autonomic doc's notes, but it never hurts to have a second, third or fourth professional opinion on things lol.

[Guest]

Let us know how you make out with Adderall?  It was my next-in-line prescription if Vyvanse didn't work well enough.  I'm curious to see how well it works for you.  

[Sam1]

7 hours ago, Draven said:

Let us know how you make out with Adderall?  It was my next-in-line prescription if Vyvanse didn't work well enough.  I'm curious to see how well it works for you.  

Well, I decided to try it earlier.  180-185 lbs - only 5mg adderall (1/2 of what was prescribed).  Had not taken any midodrine (on low starter dose 2.5mg x3 day) for 6-7 hours.  Had a big meal shortly before trying this.  About an hour in, I felt a bad episode coming on out of nowhere.  RHR jumped from about 60 to 87 (like someone flipped a switch - those with SVTs, that's what it felt like except at a slower rate) according to the ecg; was fairly concerned since that was so soon after taking it.  Took a 25mg metoprolol and within 30 minutes HR went back to normal, 60's both standing and resting.  However, about 30 minutes after taking the beta blocker I felt a pvc and then some variations in my heart rate (previously known issue with me on metropolol).  Recorded it and you can see below from the little tic marks below each row (heart beat) that it was going fast in the beginning and then slows down in the middle of the recording (spaced further apart) then speed up a bit towards the end.  Nothing major, but you know how easy it is to become hyper-sensitive over those things in our situations.

I went into this knowing that both doctors told me to be aware of everything, and luckily only took 1/2 the suggested dose.  And also already had beta blockers on-hand.  While not the atenolol that the cardiologist wanted me to try with this, it seemed to calm everything down fairly quickly.  I will not be trying any more until getting a prescription for atenolol like he suggested and next time I will try 1/4 the dose of adderall to see how that works. (note: I have never tried adderall before so didn't know what to expect)  The way I feel now is fantastic though, it's so strange being able to sit or stand and my HR not change at all... Been so long since I've felt this way.

Specifically I would like to mention that after feeling that initial onset of the adderall, proceed with caution and if you inquire on this, double check with your doctor, then check on all med interactions yourself before trying.  For me, the rest of the weekend will be back with normal meds and no more adderall until speaking with the dr. again... And - don't just jump into this carelessly, that onset spooked me pretty good because I was not expecting it to come on that strong since it was 1/2 dosage.  I think it has the potential to cause issues if not careful.  And to reinforce this a third time - be cautious this is apparently not something to play around with in our situations.  If you talk to your dr., you may want to mention having a beta blocker along with it, cause without those, I can assure you this would not have been pleasant.

[Nymph]

I had a different problem with Adderall. It made me extremely sleepy - struggling to keep my eyes open. I quit taking taking it, as that was the opposite of what I needed! Isn't it funny how vastly different our reactions can be!

[yogini]

It sounds like you have a lot going on.  I am glad you are consulting with a doctor.  Most medications take time to adjust to, and the one episode you had could have been caused a number of factors, not just the new medication.  Data can be helpful, but there is also a danger of over-analyzing.

Personally, I usually push my doctor to let me wait a few weeks between trying new medications - otherwise there are too many variables and no way to be sure what is working or causing side effects.

I eventually found a med (Paxil) which worked for me and helped to relieve all of my POTS symptoms, including brain fog and concentration.   

Good luck to you. Feel better.

[Sam1]

Thanks, and yeah I sort of expected some interactions, but both of the doctors didn't think it was a big ordeal to start it in my situation.  They just wanted me to monitor vitals.  As far as analyzing the data, that is one thing I do not do.  I record everything I can, but never analyze anything.  If being a doctor was easy enough to learn some terms and buy some cheap toys, everyone would be doing it.  However, I am a big proponent of data collection and passing it along to the qualified people... let them analyze.

The really strange thing is that I haven't taken anything at all today and moving around my HR is still the the same sitting or standing, moving around, up and down stairs on all three floors of the house... It's been right at 60-70 the entire day.  No OI issues at all.  Whatever caused this feeling today, I wish I could bottle it up and put it on the market as a pill lol.

[Lily]

Sam,

It generally takes a while for the body to adjust to ADHD meds, even for people without POTS.  It took me 2 weeks to adjust to Strattera.  Maybe you just need to give it a few days to get used to the extra neurotransmitters.  

[Guest]

Well that's not a fun reaction!  I really hope you are able to tolerate it better next time you try.  Vyvanse is the only thing that gives me usable time each day (and stills my ADHD mind for a bit).  My blood pressure is slightly higher on it too, which is definitely a good thing.

[Sam1]

Wanted to update on this, surprisingly the adderall has worked wonders.  It didn't cure anything, but it sure made things a lot more tolerable.  I'd say on most days brain fog issues have dropped by 80-90%.  Never tried a full dose (10mg 2x daily), did 5mg the first time and that was too much.  Dropped to 1/4 dose (2.5mg 2x daily) and everything has been better for 3 months now.

Still have issues with some things, but I have been able to start riding the exercise bike (can't do much anyways - artificial hip/bad knee) up to 30 minutes at a time without getting winded and still have energy, I just normally stop at that point because there's other things to do.  Hopefully between that stuff and actually being able to exercise again, things will get even better.  Ultimate goal is to get back off of it, as I don't like taking any meds at all - but it's an unfortunate necessity for most of us.