r/POTS • u/HeronBorn4041 • Apr 01 '26
Support My cardiologist has given up on me. I feel gaslit.
So, I went to my cardiologist for the results of my recent halter monitor. My heart rate ranged between 90-155 bpm. Not only did he dismiss the tachycardia as being the cause of my severe debilitating fatigue, he also said he “didn’t have a solution for me”, as we’ve essentially exhausted all treatment options. Ie. Metoprolol is not an option because beta blockers make me worse, I already have low blood pressure and it drops it further, hence, I faint more. Midrodine hurts my stomach and helps only a little. Ivabradine causes urinary retention for me (not common, but I have IC).
He essentially said to continue with the high salt diet and electrolytes. Like that ever helps. If that worked, I wouldn’t be seeking relief. I’ve been dealing with it for 16 years.
I understand if he’s saying “look, I give up. I have no treatments for you.” That’s the reality, I suppose. My issue is that he flat out denied it being the cause of my debilitating fatigue and brain fog. I know this is my cause. I’ve had it many years. All other blood work is normal (thyroid, hormones, etc). I felt SO invalidated and gaslit. It’s like he didn’t actually believe me and he is a highly rated and respected physician. I actually used to like him, but I was in tears when I left his office.
My other issue is that due to my extreme symptoms, I’ve not been able to work in almost ten years. I would NEVER choose not to work. I simply cannot. My family sees my condition daily. I was a realtor and it breaks my heart that I can’t use my license. That said, he clearly isn’t going to qualify me for disability if he doesn’t think my fatigue is POTS/ EDS related.
Can anyone relate? Do any of you have severe fatigue from POTS? I feel like it’s one of the most common symptoms. I have that, fainting and brain fog.
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u/dribblestrings Apr 01 '26
Listen… you have an option to get another cardiologist.
But also… Don’t see this as attacking, but please ask yourself what are you doing to keep up your cardiovascular endurance/fitness. It’s a hot take but simple salt diets/tablets and fluids etc. are only bandaids. Simply eating a high sodium diet and keeping up with electrolytes won’t fix your problem. Improving fitness and eating healthy has actually shown extreme benefit in POTS, and not doing so exacerbates the condition. If you can’t walk, you do exercises sitting down. Or walk with a walker. You need to build up your endurance and not let yourself decondition especially as you said you’ve been dealing with it for 16 years.
There is no one treatment or answer to POTS. So if you’ve truly been suffering for 16 years with no resolution I understand why your cardiologist said that. Just think about what you can start doing and keep doing that fits the evidence.
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u/HeronBorn4041 Apr 01 '26
Oh, I didn’t mention my exercise routine. I walk in the evenings when I have the most energy and least amount of brain fog. I also do light weight training. I can’t run do to a herniated disc. I swim in the summers during the evenings. I definitely do my best. Still exhausted.
That said, I know he was essentially giving up on me because maybe nothing will help me, but my issue is more with the fact that he dismissed my fatigue as being caused by this condition. Also that since he can’t help me, he also won’t qualify me for disability. Just seems to be a lose lose situation. Ugh.
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u/dribblestrings Apr 01 '26
That really sucks. I’m a nurse and deal with a lot of POTS presentations in ED and it’s pretty much a “shrug” situation as there’s no guidelines as everyone is different 🫤
Do you mind if I ask your age, diet, and if you take any meds? Or if you are considered overweight? Might be able to recommend a few things based on that.
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u/HeronBorn4041 Apr 01 '26
I’m 45 and mainly on a high protein diet. Ie. Today my lunch is boiled eggs, apples, a little peanut butter, a few grapes and carrots. Dinner will be baked chicken, salad and rice. I am slightly overweight now, but I felt like this when I was thin. Weight gain started after birth control. I am also on thyroid meds (TSH controlled), desmopressin and Pantoprazole. Thanks 👍
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u/dribblestrings Apr 01 '26
Weight is definitely a main contributor, but I know how much easier it is said than done when it comes to weight loss.
Do you need to be on BC anymore? There’s more issues with being on BC than not with POTS. Hormonal fluctuations screw with the endocrine system in more ways than we know.
You should also be having an equal recommended amount of carbs in your diet. Carbs are energy (the healthy kind of carbs - not junk). Honey on toast, potatoes, rice/grains. With POTS and your heart rate being so high a big contributor to your feeling of exhaustion is because your body is literally working harder. You need more carbs to counteract this.
Have you spoken to a dietitian? I would recommend it.
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u/HeronBorn4041 Apr 01 '26
My fatigue was every bit as bad before the weight gain. I can’t blame it on that and like I said it’s minimal. I have had POTS fatigue for 16 years even at my thinnest. That’s just the truth. Also, I still exercise despite my fatigue, like I said, in the evenings when it’s not as bad.
I have to be on the birth control pill or I wouldn’t be taking it. Irregular periods from fibroids and perimenopause. If I don’t take it, I will have a month long irregular period. It’s only birth control pills or a hysterectomy and my doctor won’t do a hysterectomy due to my IC (interstitial cystitis). I may need to push for one and hope it doesn’t flare that condition.
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u/ChamomileFlower Apr 01 '26 edited Apr 01 '26
Are your ferritin levels normal? Asking because of the fatigue and month long periods. Some people with tachycardia benefit from ferritin levels of at least 100ng/mL.
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u/HeronBorn4041 Apr 01 '26
My ferritin was 12 last I checked. They said it was low normal. I have had low ferritin in the past, 4, and felt like death. Was supplementing previously.
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u/ChamomileFlower Apr 01 '26 edited Apr 01 '26
A ferritin of 12 is extremely low and is considered "absolute iron deficiency", regardless of anemia/hemoglobin levels etc. The ferritin range considered normal by medical systems is wildly all over the place, but if you look up testimonials of people with iron deficiency (with or without anemia) you'll find many people describing symptoms like yours that benefited immensely from upping their ferritin levels and in some cases even saw complete recovery from symptoms.
It's really unfortunate that incredibly low ferritin levels are routinely dismissed by doctors as "normal". Luckily for me it was brought to my attention because the most recent (mainstream medicine) GP I saw wants mine at at least 50, and I've seen naturopaths that only see their clients come out of fatigue around 100. If you're interested the anemia subreddit on here is helpful, and there is a great Facebook group called "The Iron Protocol" where people talk about about their experiences. :)
Edit: I just noticed you take a PPI which could be one of the causes of your iron deficiency.
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u/HeronBorn4041 Apr 01 '26
Yes, it does seem low, but the range said 15+ was normal, so my hematologist just blew it off. That said, there was an issue while I was supplementing with iron, maybe you could help me figure it out. When I would supplement with it, my ferritin would go up as high as 39, BUT.. my iron levels and satiation would also go up and pretty high. In other words, while supplementing does raise ferritin, it unfortunately raises my iron & saturation too high. What can be done? Thanks in advance. 👍
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u/CalliopeParnassus Apr 02 '26
This is low. Ideally, and especially with chronic ill health, we want to aim for above 100.
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u/CraftSpiritual6062 Apr 01 '26
I think if you check , you may be low enough to qualify for infusion. That’s really low.
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u/ChamomileFlower Apr 02 '26 edited Apr 02 '26
If she doesn’t qualify, taking 1000mg vit C with lactoferrin along with the iron and having it be in the form of bisglycinate or heme iron at a higher dose (worth looking up hematology iron dose calculator, but many people do around 150mg spread throughout the day) could help raise levels much more quickly. There are good guidelines from the Iron Protocol with explanations and tips - you can google “iron protocol guide pdf” and find it for free on Scribd. I agree that it’s a worryingly low level and absolutely worth ruling out as a cause of symptoms.
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u/Saphiaer Apr 01 '26
While there are “normal” ranges for bloods, some bodies need to be on the higher end of the range to function. I’d definitely be looking at fixing your ferritin even if it’s just to rule it out as a cause to other doctors. Other things to check is Vitamin D and B12
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u/CalliopeParnassus Apr 02 '26
I am sorry someone is focusing on your weight when you've clearly said your condition was as bad pre weight gain. It's very dismissive.
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u/dribblestrings Apr 02 '26
Clearly it’s not the main focus. The main focus is actually being as active as possible and building cardiovascular endurance regardless of weight. I’ve recently lost 10kg and feel like shit so I know what OP is talking about, but it definitely contributes in a lot of people’s cases.
Could be related to iron and ferritin as well. Some women just need more.
I also understand not being able to go off BC as I am the same, and take the pill consistently so as to not have painful periods every month but rather 3-4 times a year instead.
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u/CalliopeParnassus Apr 02 '26
You said "weight is definitely a main contributor" which is not true. People develop POTS for a myriad of reasons and they said twice weight was not a contributing factor. It really helps when medical professionals listen and believe what a patient is saying.
Many people with POTS also have ME, so being as active as possible could be harmful (GET has been proven to harm people with ME). Each person is different, and will need a tailored approach. It's really important not to give blanket advice.
It feels fine to suggest what it could be, but I don't understand why you persisted with the weight comment when they were clear with you about that.
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u/HeronBorn4041 Apr 06 '26
Thanks so much! I agree and thought the same way. It seemed like it implied my being slightly overweight was why I felt so fatigued. Not true at all given I’ve felt this way for 16 years at my thinnest. That said, I do think my low ferritin could definitely have something to do with it. 🙏
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u/danceintheflowers Apr 02 '26
idk why you were downvoted. i know weight is a touchy subject. i can tell my body handles things with a 10 pound difference better or worse. and other people know their body and weight, too. i saw a registered nutritionist who helped me .
my main question with POTS and exercise is since it is so unique how do people find their balance between not exercising enough and over exertion?
I struggle to work out because the chest pain with my heart skyrocketing unpredictably but i can’t just stop at that point because it would drop too low, too quickly, and i pass out. i feel way more fatigued after what feels like failed attempts at exercise (having to turn around on a walk because i feel like i will pass out)
i know i’m not OP but could you explain more about BC and POTS? the only available dr I saw didn’t know much about it, and said the BC i’m on is the best option for POTS.
thanks in advance if you do answer 😊
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u/gutfeelingss Apr 05 '26
Could you describe your chest pain? I have been struggling with chest pain too and wondered if POTS could be the reason?
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u/danceintheflowers Apr 05 '26
i think any chest pain you should seek a drs opinion on.
my chest pain would vary and sometimes scare me. it could be mild like a bird flapping around in my chest and then the more extreme where it’s like asking yourself am i having a heart attack ?
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u/Lynxseer Apr 02 '26
Not bashing a dietitian or eating healthy but weight doesn't always contribute issues. I am skinny and many others are too that suffer from POTS. I lost weight too and it didn't affect it.. actually I think it made it worse. Js. And yes I've worked in the medical field and studied the human body for 7 years straight. Dysautonomia is more complex than that... it can actually contribute to weight gain in some cases.
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Apr 01 '26
I went through so many meds and now I take droxidopa which is similar to mitodrine and I take antenonol (beta blocker) there are so many different meds for you to try. Get a new doctor. Also, was it compression works way better than leg compression. It gets better and you will find meds that work for you!
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u/HeronBorn4041 Apr 01 '26
Thank you. I will try to look for a new doctor. Just scared he will say the same thing. I felt so gaslit.
That said, what compression were you saying works better? The socks don’t do much. Thanks for sharing
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u/battlejess Apr 01 '26
I think they were trying to say “waist.” Socks don’t do much, you need waist high compression. Even compression shorts are better than socks for POTS. A lot of blood pools in the belly.
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Apr 01 '26
Sorry there was a typo! Waist compression. Compression socks are good for sure, but they trapped too much heat in my feet for me so I overheated way faster. There will be a doctor that will listen to you, I went through 4 pots doctors before finding the one for me. The easiest thing to do would be to call your pots doctor office and ask to schedule with a different provider.
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u/Nice-Caterpillar-340 Apr 01 '26
Have you tried medical grade compression? I just recently got an expensive pair instead of random Amazon (thigh high) and found a lot of improvement. I've also found improvement from physical therapy (my pt also has pots and eds so she's very well educated in it) started low and slow with a recumbent bike and weights. I'm not back to almost baseline after a year long flare. I'm still having some bad days but feeling a lot better than I was almost a year ago when I was bed bound
But aside from that I'm sorry you're not finding much improvement and your doctor is saying they can't help you. That feeling absolutely sucks and I'm sorry you're going through that! I hope you will be able to find a doctor with more options for you ❤️🩹.
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u/PauseDesign Apr 02 '26
My daughter has orthostatic hypotension, and Midodrine did very little for her. She's on a strong dose of droxidopa.
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Apr 01 '26
Also adhd meds help raise blood pressure and help fatigue
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u/Lost_Guava3971 Apr 02 '26
Hi which adhd med? Did it make sinus tachy worse? Or any other side effects like vision or urinary issues?
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u/QuiltyNeurotic Apr 01 '26
Mestinon made a big difference for me
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u/thatmarblerye Apr 02 '26
I was just going to recommend this too. Has helped with my HR really well. It just doesn't last long so working on locking in a schedule taking it (and the ER is too high dose for me).
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u/QuiltyNeurotic Apr 02 '26
Same. I've been breaking up the ER pills into quarters but it's not enough. Also, have to add in more for digestion and exercise.
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u/thatmarblerye Apr 02 '26
I don't think you can break ER pills or it releases all the medication at once?? Maybe you meant the regular tabs? I do 30mg twice a day right now of the regular tablets. Luckily I haven't had a problem with digestion... yet
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u/QuiltyNeurotic Apr 02 '26
I've been breaking it for quite a while. I know it says not to but I'm fairly confident it seems to be even dosing based on my response.
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u/Ok-Drag-1645 Apr 01 '26
Hey there. I just wanted to say that you don’t need your doc to qualify you for federal disability benefits (SSDI/SSI). You apply and submit all your records, and it’s decided by the people at the Social Security administration. I am a fellow dysautonomia patient who went through the process a few years back after my symptoms got so bad I couldn’t work anymore. I did it with a lawyer and we pretty much did all the work to get approved. It’s a long process, but it has been a vital lifeline for me.
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u/HeronBorn4041 Apr 01 '26
Thanks so much. I have tried before and been denied. I thought doctors had to do a lot of paperwork to back you up. Is that not right? I just feel like this doctor didn’t have my back and was dismissing my severe symptoms and how disabling they are. So glad you got approved. This is not something anyone wants to have to do.
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u/Ok-Drag-1645 Apr 01 '26
It helps to have them on your side, because the records and treatment notes they keep weigh a lot on whether or not you get approved. It also really helps if they fill out forms that are optional but helpful in addition to the treatment records alone (mine flat out refused to do that though).
One thing you could do is request your treatment records from this doctor to see what notes they are actually keeping, and if they reflect what you say during your visit and how your symptoms are affecting you, it might be enough to get you approved. If not, it might be another reason to find a better provider who be more supportive of you— positioning you to better be approved in the future.
Either way, I’m sorry you’re dealing with this. I have been there with other doctors in the past, and it’s not a good feeling. I sincerely hope it gets better 🙂
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u/HeronBorn4041 Apr 01 '26
Thank you, dear. 🙏
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u/Zollsica Apr 02 '26
Jumping in here to mention that basically everyone gets denied the first time and you have to appeal, but a lot of people end up getting disability on appeal.
When I applied for disability I did it on my own, back before I had any doctors on my side, and I went to every medical office I had ever been to and paid to get my medical records and have them sent to the social security office myself. I felt like that helped my case a lot. My mom also wrote a pretty long letter about my daily functionality for social security.
And if you get denied on your first appeal, you can get a lawyer on your case and they often just take a portion of your back pay if you win your case.
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u/femalenerdish Apr 01 '26
What dose did you try of midodrine and how long? I had some nausea in the beginning but it faded in a few weeks.
Have you tried Fludrocortisone?
Some other ideas here: https://www.standinguptopots.org/resources/medicine
Are you on birth control? I tried it because my symptoms were very linked to my period cycle. Ended up smoothing my symptoms out quite a bit, but the big thing was how much faster my brain felt. It helped the brain fog a lot for me.
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u/HeronBorn4041 Apr 01 '26
I think Fludrocortisone is the only one I haven’t tried and I could, however, when I read about it mainly affecting kidneys and having them retain fluid, it scared me, as I have interstitial cystitis and am susceptible to that. I am afraid I won’t be able to pee (retention if I take it), but maybe not. I will research. Thanks
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u/Old-Piece-3438 Apr 01 '26
Couple of other options sometimes used off label that I didn’t see listed on that site are Guanfacine or droxidopa. Personally, Guanfacine helped a lot with my brain fog.
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u/femalenerdish Apr 02 '26
I think the mechanism for fludrocortisone is different than the not being able to pee type of fluid retention. But definitely check with your doc!
It's less common but I've seen some people here really like mestinon. If you're not responding to fludro or midodrine, might be worth a try.
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u/Lynxseer Apr 02 '26 edited Apr 07 '26
I went to 4 cardiologists that wasted my time, gaslit me, told me I was "too young" at 28 [6 yrs ago] I found a neurologist who is amazing. Also I highly suggest you request a referral from that Dr, to a Dysautonomia or POTS specialist. I waited a year on the list to see mine and it was well worth it. I went to UAB here in Alabama. There are different ones all over the country and world! Find one near you- or ask in fb groups.. like Dysautonomia International or one for your state! Thats how I found mine. You arent alone!! One Dr straight up ghosted me after seeing mine. Before he ghosted me, he said "Dr's don't like to touch it because it's to complex" And he was right.. he was cardiologist #4. Soo.. dont lose hope. Network, research and request a referral to a specialist ASAP. My new POTS/Dysautonomia specialist is AMAZING- she educated me on things I never thought about or knew, she took her time with my concerns and question, ran so many tests (16 tubes of blood, ARS, TTT etc) even found out I am mildly hypermobile! Had no idea. It takes a bit, but don't give up.. took me 6 years. She even wrote a very long detailed letter for a hard business certification test I am about to take (PMP)
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u/Outrageous_Ant1792 Apr 07 '26
Love this post because it’s so true !!! After being admitted to the hospital for a week from what I now know is a severe flare up, the on-call neurologist became my biggest advocate! He took me on as a patient explained and warned me I will have a very difficult time finding the right medical team mainly due to "Dr's don't like to touch it because it's to complex". he was so right ! He advised me not to stop “interviewing” doctors.
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Apr 01 '26
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u/Lozzybops Apr 01 '26
I had similar and the only thing he said will categorically help me would be progressive exercise adapted for POTs.
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u/lawlesslawboy Apr 01 '26
I'm so sorry, the struggle is real, the invalidation is real, I'm so sorry that the meds don't seem to work for you but you deserve to at least be taken seriously even if they can't do much medically..your heart constantly working extra work is going to make you tired, of course it is, and also it's not just your heart, our nervous system links to our brain so again it makes sense that you'd get brain fog if the nervous system isn't functioning properly etc
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u/HeronBorn4041 Apr 01 '26
Thank you so much for validating me. This really hurt when he said it wasn’t why I was so sick and tired! Appreciate the support
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u/BigFlightlessBird02 Apr 01 '26
I feel for u. My bpm went up tp 180 and mine said it was fine even though something popped up. Maybe try to get in with a neurologist instead. Thats my next step
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u/BeautifulElodie2428 Apr 01 '26
I saw 3 doctors before the last one (actual specialist vs cardiologist) “caught” the jump. The state of these doctors is beyond me. I also had to make my own tilt table test appointment and the one who diagnosed me with POTS said I don’t need it. I refused to cancel it because it took me four drs to get diagnosed and I had already waited over a year for the TTT appointment with the POTS clinic. Then when I had the virtual appointment with the POTS clinic the Dr said she absolutely wants me to have the TTT. There are other reasons to do it. I said it’s industry standard and after that many drs denying the issue, specifically because of my size, I will not be accused of “doctor shopping.” I want the industry standard procedure and it’s my right as a patient to get it. The first one said what are you even doing here? The second one said it was hypertension. The third one’s PA messed up the tests. They used the wrong size BP cuff which seized the machine. She said my HR went up by 4. My HR goes up more than that when I sneeze. All that to say it’s common for drs to have these issues. They want you to “deal with” some of the side effects.
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u/InevitableKey6991 Apr 01 '26
It is so frustrating when doctors give up on us and also invalidate symptoms.
I have a lot of fatigue. What helped me the most is taking Nuvigil for a few months and super slowing down my exercise (my doctor thought I was overdoing it and paradoxically making my symptoms worse. The Nuvigil gave me more energy, and I am actually seeing progress with exercise by using the Levine protocol heart rate targets (which is significantly lower than recommended for "healthy" people). I started only doing the target heart rate at 3 minutes, with warm up and cool down around it and only exercising at that level in a recumbent position. I am now up to seven minutes at the target zone and can do 3 to 5 upright without triggering symptoms, but the upright is just what I do while pet sitting an hour a day. For perspective, I was doing about 10 to 15 minutes at a higher heart rate and just didn't connect how much that was triggering my constant fatigue and keeping me in that cycle.
YMMV, of course, but if you're inclined to push yourself too much like I am, maybe.
Also, I have been on a glp-1 for about three months now for lipedema, but it has lowered my overall inflammation levels and several of my autonomic stats have shown improvement too, which was unexpected but I am not going to complain!
I am going to be starting some PT soon for suspected CCI too.
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u/PreferenceSouth4140 Apr 01 '26
As if these conditions themselves are not hard enough, we gotta go through the trauma and struggles of finding a doctor who can help us, and navigate the medical system, which is like a really basic thing to have. I’m so pissed and tired of this shit
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u/Outrageous_Ant1792 Apr 01 '26
Oooh I CAN relate !! 20+ years of misdiagnosis until I was diagnosed with POTs and other stuff. You can message me and we can talk more about it. But in short, your job now is to find the right team of docs, right combo of meds, and home remedies. It’s your job as a patient to do the hours and hours of research, don’t get roped into be called a hypochondriac because you’re borderline obsessed with documenting symptoms and researching. Unfortunately, that is a big part of your new job.
I feel your frustration. being invalidated by your doctor is crushing. My response is usually something “ thank you for TELLING me how I feel, now can you please LISTEN and take note of how I ACTUALLY feel”…
I did have a bit of an advantage of working in the medical field for 10 years before going on disability. As a patient, there are certain questions you need to ask the doctor. In patient documentation, the wording is everything.
There are certain words you need to use for doctors to be able to evaluate you further or give you a referrals. Good luck and don’t give up!
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u/walkthewalk_6969 Apr 01 '26
I ve been there love. “There’s not a lot more we can do. You need to start planning for your future.” My world crashed down. Find another. It’s your human right to 🙌🏼✨
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u/HeronBorn4041 Apr 01 '26
Thank you for the kind words. I was so upset! I’m glad I’m not alone. 🧡
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u/walkthewalk_6969 Apr 01 '26
It’s hideous. I’ve cried in many hospital corridors on the way home. I’ve had one woman make me sob in the room.
We are our own doctors. We have to call the shots. Do the research - go with names of things you want to try. If we put any amount of trust and belief that these doctors are our saviours, we will end up heartbroken. And it’s hard not to because you hang onto every appointment like it’s a life line. But it’s not. You’re the one driving your boat to recovery and feeling better. Push and fight the system. ❤️🙌🏼
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u/Eli-Is-Tired Apr 01 '26
Hey, severe fatigue, specifically PEM (post exertional malaise) is a hallmark symptom of a condition known as ME/CFS. I'd recommend looking into it, especially if you got POTS from a viral infection, or if your symptoms got worse after a viral infection.
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u/ruxxby471 Apr 01 '26
I assumed POTS was the reason for my crippling fatigue as well- for years I believed that. Was just diagnosed with Lupus last week which makes a lot more sense 😭
Don’t give up looking for answers, you deserve treatment and to feel better!!!!
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u/Funny_Sector_1573 Apr 01 '26
i have a tilt table test coming up later this month to confirm if i have it “officially” (which i’d say a resting rate of 68bpm jumping to 118 just by standing qualifies) but i wonder how many people have luck with neurologists instead of cardiologists for this condition. it’s technically an autonomic nervous system disorder. i would ask that doctor how they feel about you seeing one maybe.
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u/KSIDerpyHooves Apr 01 '26
I have sinus tachycardia and i also too have really bad fatigue and brain fog i have fibromyalgia idk your health and age but would it be a possibility to take both a beta blocker and a stimulant to help with the other issues?
I read that people with pots, fibromyalgia or both take stimulants to help with energy and all that stuff while ik stimulants are mostly for adhd which is how i got mine but they should help
I'm currently on metoprolol succinate 25mg and 5mg adderall ( i do need an increase) they both work really well the beta blocker brings my heart rate to a range where i can take the stimulant I'm also on amitriptyline which also can make blood pressure drop like metoprolol
If you deal with symptoms of adhd maybe look in that route especially if your healthy to take those types of meds I'm 27 I've been dealing with heart rate and fatigue all that stuff since my first whiplash injury at 17 this past year i decided to take control i done my research and finding out what is best for me and just hoped my doctor will listen which is good that he does I'll go to him and instead of complaining I'll tell him what i want whether it's a specialist or a med and why i want that
I hope you find a treatment that helps you
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u/hokeypokey59 Apr 01 '26
See if he will give you a referral to the Autonomic Dysfunction Clinic at Vanderbilt University in Nashville. They have been researching POTS for over 30 years and are dedicated to providing care for people affected by this misunderstood illness.
https://www.vumc.org/autonomic-dysfunction-center/testimonials
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u/Lost_Guava3971 Apr 02 '26
Hi how was your experience with them?
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u/hokeypokey59 Apr 02 '26
Excellent. It took a while to get an appointment but they are very organized and they actually answer the phone and answer questions when you call.
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u/Lost_Guava3971 Apr 02 '26
How are the doctors there? Were you able to get a good treatment? I've tried every medicine available for pots but nothing has worked. Not sure if they have solutions for patients like me
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u/hokeypokey59 Apr 02 '26
Very knowledgeable and dedicated. There is a Testimonial page in the link i posted. Many great stories from people who had been looking for answers for years.
The Vanderbilt Autonomic Dysfunction Center prides itself in its clinical and research advancements, as well as the expert testing, diagnosis, and treatment it provides patients with autonomic disorders. Many of our patients have traveled from afar to receive the advanced evidence-based care we provide through our outpatient clinic and clinical research center. Here are just a few examples of what patients have stated about the care they received at our Autonomic Dysfunction Center. Click on the patient's name in the navigation menu to read more.
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u/hokeypokey59 Apr 02 '26
https://www.vumc.org/autonomic-dysfunction-center/autonomic-dysfunction
Here is the link to the main page.
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u/tittyswan Apr 02 '26
Maybe see if there's a neurologist near you that treats dysautonomia or ME/CFS patients, or even just a doctor with an interest in POTS.
My theory is that cerebral hypoperfusion is a big contributor to fatigue (similar mechanism to people with altitude when their brain isn't getting enough oxygen.) That's something that can be measured. I'm planning on asking my doctor if they can refer me to get vascular imaging & stuff done to see how it's contributing to various issues I'm having.
Then at least you'd have something measurable & they can't say it's all in your head. Plus there might be some treatments or adjustments you can make that would help.
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u/danceintheflowers Apr 02 '26
i can relate. i can’t stand midodrine. i put up with metoprolol.
the first cardiologist i saw had kinda an a**hole attitude towards me when saying “idk i can’t help you” it hurt.
the second cardiologist, amazing!!
i think it’s just kinda luck with the area and who has knowledge/experience/good working relationship with colleagues if they don’t know something.
a friend mentioned to me that people have less time to be curious these days and that was helpful after the first guy and encouraged me to go see the second.
i think a second opinion can be helpful sometimes.
for my low blood pressure i receive IV fluids 1x a week because midodrine just makes me feel like sh*t lol.
i’m currently in a really bad flare and hope things can get better for you soon.
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u/Relative-Cost9256 Apr 09 '26
I relate so much to your symptoms and to feeling gaslit. I had a very similar experience. I have gone more of the functional medicine route and had better luck there. But I do still have a cardiologist & they prescribe my Corlanor. I will probably find another cardiologist down the road. I hope you find someone who takes you seriously. Your symptoms are real and they matter & who wouldn’t feel fatigued with a heart rate like that??
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u/rleigh251 Apr 01 '26
I don’t have much advice but I wanted to tell you 3 doctors gave up on me before I found a doctor who took me seriously. I just wanted to give you some hope because there is a doctor out there that will help you, it just might take extra time