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MotherNature97

401d

Hello! I am new to this app and I am struggling. I was diagnosed with POTS in June 2022, cause they said unknown, possibly trauma. I was diagnosed with ADHD in January 2023. Now that I think about it, I have had both since at least High School (28 years old now) but chalked it up to anxiety. I'm currently taking prozac 40 mg, adderall XR 5mg and propranolol 60 mg daily in the morning. I am struggling mentally constantly with the ADHD and desperately need an effective dosage/medication. Upping my adderall increases my heart rate which exacerbates my POTS symptoms. The propranolol helps lower overall heart rate and POTS symptoms that come with high heart rate, but all symptoms remain otherwise. I have tried making life style changes but I cannot maintain any routine with the state my ADHD is in. Long story short, what I'm doing isn't working and my current POTS doctor isn't helping. Going to a new one in a few weeks, so I would like to go as prepared as possible with ideas. For those with POTS and ADHD: what works for you? what doesn't? any tips?

Top reply
    • hmm

      396d

      I can't give much advice myself because I don't even have an official diagnosis yet, but as far as any new medications you might try, avoid SNRI's!!! Stuff like wellbutrin, cymbalta, effexor, etc. SNRI's are known to make POTS symptoms significantly worse, and i've experienced it first hand. ive only gotten close to fainting once or twice over 5 years ago, but since starting an SNRI (cymbalta) ive fainted/gotten close to fainting at least 3 times within the past few months- one of the most terrifying things that's happened to me holy shit i hate fainting. ive also been very easily dizzy, just moving my head can make it feel like the room is spinning. Whenever you and your Dr(s) are talking about starting a new med always look it up in relation to any medical issues you have, I definitely should have!

    • hmm

      396d

      I can't give much advice myself because I don't even have an official diagnosis yet, but as far as any new medications you might try, avoid SNRI's!!! Stuff like wellbutrin, cymbalta, effexor, etc. SNRI's are known to make POTS symptoms significantly worse, and i've experienced it first hand. ive only gotten close to fainting once or twice over 5 years ago, but since starting an SNRI (cymbalta) ive fainted/gotten close to fainting at least 3 times within the past few months- one of the most terrifying things that's happened to me holy shit i hate fainting. ive also been very easily dizzy, just moving my head can make it feel like the room is spinning. Whenever you and your Dr(s) are talking about starting a new med always look it up in relation to any medical issues you have, I definitely should have!

    • Crow123

      398d

      I am only just about to start ADHD medication again (was diagnosed years ago but haven't tried since I was a kid) so I can't really tell you my experience yet, my my cardiologist did actually say that concerta/ritalin can be a treatment for POTS for some people. If Adderall isn't working for you, maybe you and your doctor might want to look into switching to concerta/ritalin?

      • MotherNature97

        398d

        @Crow123 Thanks for your reply. I think I'm going to change up everything. We are looking at Concerta as well.

    • verasama

      400d

      It sounds like a lot of your issues, at least when it comes to the ADHD, or with executive function. I found that a combination of a medication that works for me and sort of unofficial occupational therapy (I haven't spoken with an occupational therapist, but I have a friend who has been dealing with her ADHD her entire life, and she is able to make a lot of suggestions to help me with my executive function.) I found that making lists helps me focus a lot. It also really helps when I'm feeling overwhelmed by a task if I can break it up into small steps on a list. Then instead of having to look at the whole task, I just look at the first step, and I tell myself over and over again that I don't have to do everything, I just have to do that first step. And then I reevaluate once that step is done, and decide if I'm up to doing a second step right then, or if I need a bit of a break. Fidgeting and hyperactivity, I'm a huge supporter of fidget toys. Whatever feels right to you. I have a little squishy memory foam cat that my niece gave me for Christmas last year, and I am not above sitting there and squishing it the entire time I'm making phone calls. Same thing with fidget spinners or fidget cubes, or anything like that. I was known to carry one around in my pocket at work, and sit there and meetings taking notes with one hand and fidgeting with my toy in my pocket and the other. As far as the sensory overload, the best thing I have found is some noise canceling earbuds. I have a pair that lets you decide if you want all noise blocked, or if you want to still be able to hear background noise, and when I'm feeling over stimulated by all of the sounds and sensations around me, I pop those in and either put them on a full noise block and close my eyes until I feel a little less shaky, or I turn on some soft music or some kind of soundscape, or something like that. Being able to control the amount of noise that is coming in really helps me a lot. Believe me, I understand real life getting in the way of trying to take care of your mental health. Have you tried a self-care app? I'm on Finch, and it's really helped me to set goals on there, and there's enough different things that I can do with my little finch before it to actually hold my interest longer than most other things. I haven't found anything that really helps with the hyper focusing, except for perhaps learning when you're doing it and making the conscious effort to take a step back. Mostly, I'm just glad that I have friends who are willing to listen to me ramble on endlessly about this band this week, and that video game next week, and so on. I hope at least some of this is able to help, and I'm sorry I couldn't help more with the POTS portion of your question.

    • AlexE

      401d

      I take Concerta for my ADHD and propranolol. I don't notice the Concerta increasing my heart rate. I take 36mg of Concerta and 40mg of propranolol. No problems so far been years in Concerta about 4 or 5 months on propranolol now. I don't think my propranolol dose would be enough if I was more mobile though. I am mostly bedbound due to my other chronic illnesses.

    • verasama

      401d

      I don't have POTS, So I'm not sure how much help my advice will be, but as I was taking Adderall up until very recently, I wanted to try and offer some advice. First, it's very likely that you've had ADHD all of your life. My understanding, and what I have encountered with the people I know who also have it, is that's usually the case. That said, I was not officially diagnosed with it until 2021, which was when I started taking Adderall. My ADHD is more attentioned based than hyperactivity, but my doctor started me out with the 10 mg Adderall twice a day, and ended up bumping me up to the 20 mg just a bit later. I didn't personally experience any increase in heart rate despite the fact that I was drinking a lot more caffeine than I should have, and really the only reason I got off of the Adderall was because of the nationwide shortage on it. I'm on Vyvanse now, but I haven't really been on it long enough to say how I feel about it. Have you tried something like occupational therapy? To help with coping skills and tactics to help you manage your ADHD? I have found that lists help a lot with my ADHD, as well as my anxiety. And I have also found that knowing your symptoms and basically playing around with it until you find some method that works for you is the best way I found to deal with it. In what way have you been struggling with it? Perhaps I could give some better tips if I know more. Nothing too personal, of course.

      • MotherNature97

        401d

        @verasama Thanks for the reply! I have a lot of symptoms. I wrote this list up for my doctor. Mainly physical symptoms: With excertion: increased heart rate, shortness of breath, dizziness, lightheaded, overheating, excessive sweating, nausea, swelling in extremities Other symptoms: action tremor, extreme fatigue and exhaustion, chronic muscle pain and weakness, joint pain, foot pain when upright, skin sensitivity and sensations, daily migraine headaches, adrenaline dumps, temperature irregulations, excessive sweating My mental symptoms include the following: brain fog, sugar/carb cravings, hyper focusing, no attention span, little motivation especially when there is more than 2 steps of work or it looks overwhelming, get overwhelmed easily, sensory sensitivity, mood fluctuations, constant fidgeting, can't focus whatsoever, etc. It's getting hard to exist with both. The physical symptoms with POTS are debilitating some days, then I get behind on work, and the ADHD makes it hard to get caught up. Not to mention throwing in the average life stuff like the flu, having small children, and working in a school. Like I said, I've tried making life adjustments with both POTS and ADHD but I struggle maintaining the structure due to the ADHD.

    • EducationiPod

      401d

      Most ADHD meds either have conflicting side effects with propranolol or affect how propranolol is metabolized in the liver. I take Wellbutrin and Propranolol carefully as Wellbutrin is a strong inhibitor of CY2D6 (major pathway for propranolol) and slows down metabolism, resulting in more propranolol in the blood. I take a low dose of propranolol.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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Some people with POTS and ADHD have found success with medications like Strattera for ADHD, which may not exacerbate POTS symptoms as much as stimulants like Adderall. Others have tried different combinations of medications, such as midodrine, fludrocortisone, or beta blockers like Metoprolol for POTS symptoms. It's important to discuss your specific situation and concerns with your new doctor, as they can help determine the best course of action for your individual needs.

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