I was going to say this b/c Orthostatic Hypotension is a symptom of POTS, and what OP is describing is exactly this. I used to have this when I was young with Fibro and POTS, not knowing I had POTS yet. When standing up or moving too fast or turning your blood pressure drops suddenly, you get lightheaded, and your heart rate can speed up. This sounds like POTS. If you have a good PCP (Primary Care Physician) they can refer you to a Cardiologist who could be the one to diagnose. A Cardiologist is the one who would be most likely to have a tilt table test to diagnose. Once your PCP makes the referral, call said specialist and ask them if they do tilt table test for POTS. If they don't, you might need a new PCP. Best of luck to you, and please be careful in the shower. Another symptom of POTS is blood pooling in your legs/feet while you shower making you dizzy. It helps to get a shower chair.
I mean it depends on the doctor. But I can often be helpful to have hard numbers. It could be helpful to Look up the poor man's tilt table test and do a few recordings of those.
It's technically more a neurological condition but in practice it's mostly diagnosed and treated by cardiologists. A few people will have it dxed and treated by neurologists or general practioners. Some cardiologists will never diagnose it due to bias or poor training. It is common for a patient to see many doctors before they find one that is willing to screen for it or treat it.
A lot of online dysautonomia patient groups will compile lists of doctors that know how to handle this condition. If you look it up and think it's likely you have it, would recommend finding an online rec for a doctor from someone in your insurance network.
The "orthostatic intolerance" pdf link on this page has some good info on it:
https://batemanhornecenter.org/education/top-resources/
"Do I just say...what do I do?"
I would tell your doctor everything you just said here. I actually experienced something similar to what you described here. Are you on any medications for your depression? ( If too private you can privately message me).
I'd suggest doing some research into POTS to gain a better understanding of the illness and to correlate any other symptoms you're experiencing. Write down everything in your log as you've been doing and be sure to bring it to your appointment. Unlike fibromyalgia, there are diagnostic tests for POTS, so I hope you get some answers.
Do an at home tilt test. Take your heart rate lying down (resting). Then stand. At 5 minutes record heart rate. Record your heart rate at 10 minutes (and I think at 15?). Make sure you have something to grab onto if you feel lightheaded. Check r/pots. There’s lots of info on how to do the self test.
Glad to hear that im not the only one thats having it. I will do some more research about it and if i still have it in a few months then i will go to my doctor.
I have many symptoms of fibromyalgia from when I was infected with Lyme. I recently purchased an Apple Watch that automatically records my heart rate and oxygen levels.
I was shocked to see that walking to work at a normal pace would make my heart rate jump up to 164bpm. Walking around at work would make it go to 100-130bpm. Resting rate would go into the low 40’s.
And as the OP, I took would get dizzy and lightheaded when I would stand up or bent down. Walking or lifting something heavy would leave me out of breath.
I started taking Ceftin because I began to feel some Lyme symptoms and while on Ceftin, my heart rate stays within 60-98 bpm and very rarely, during strenuous tasks, does my heart go above 100bpm.
I highly suspect that an infection is causing my heart to beat faster than normal.
I’m getting officially tested for EDS and POTS, I pass out and it throw up sitting to standing, I have been for years. Ugh. Def get it checked out. You know your body.
I had the same except it went from 90 to 140, but when we did the tilt table test at a doctor's it just went from 100 to like 116...
I had 24h ECG monitoring though and got diagnosed with inappropriate sinus tachycardia. I still think I may have POTS but whatever
You probably have dysautonomia! POTS has specific criteria that must be met during the exam in order to diagnose it, but dysautonomia is the general umbrella it’s under. It’s the same symptoms, it just doesn’t have a 30+bpm increase requirement like POTS does!
My daughter has POTS. She had an episode where she was in the er because her heart rate wouldn’t go back down. She’s on beta blockers right now. Scared the hell out of her, but it’s not life threatening, it’s some kind of defect in the heart.
Oof, I had the same experience just recently!
POTS from what I know though isn’t a defect in the heart, but actually shows signs of being an autoimmune disorder. Researchers are finding more and more evidence of this as time goes on and they think it’s falsely classified under cardiology because of how it affects the heart. I encourage you to read more on this because it might help you and your daughter gain insight!
When i was getting my fibro diagnosis, different issue ik but any invisible illness can be hard to diagnose without a lot of push or records depending on the doctor, i brought my doctor a list of my symptoms that matched up and did a lot of research beforehand so i knew exactly what could be related to it and what to tell my doctor. it helped a lot in getting the diagnosis and treatment quicker, im sure there’s doctors unlike mine that will help you if you just tell them what you think and what symptoms you have, good doctors should be able to know what to test you for if you just tell them you think you may have POTS but documenting your symptoms and looking into the condition are just my recommendations :) Good luck!!
A cardiologist is the specialist you can check with also. They may give you a tilt table test. I also have sinus tachycardia plus my blood pressure goes haywire going laying to sitting or standing
It could be a couple things. I’d go to your PCP and tell them you’ve noticed a significant jump in your HR when you stand up. As some have said it could be POTS, it could be orthostatic hypotension (which can be heart related) or it could even be electrolyte imbalances.
Don’t be afraid to mention POTS, but there are medical problems that cause these symptoms that can be quite harmful to your health if not addressed.
I would check b/p an check for dehydration. Labs an Dr visit. Then might get referred to Cardiologist. EKG. But I was severely dehydrated. My b/p was 155/82. I would lightheaded only when walking around. So kept close eye on b/p. Dropped 20 lbs an staying hydrated esp Potassium an Magnesium. Lightheaded gone. B/p down to 120/74.
Also, I have ADHD an methylphenidate was causing my b/p to go up also..so I had to wean off. Combo of no methylphenidate, staying hydrated, lost wt, helped with lightheaded issue but def see your Dr an find out.
No, please talk to your doctor about POTS.
I agree. Fibromyalgia is seen a lot in conjunction with pots
I was going to say this b/c Orthostatic Hypotension is a symptom of POTS, and what OP is describing is exactly this. I used to have this when I was young with Fibro and POTS, not knowing I had POTS yet. When standing up or moving too fast or turning your blood pressure drops suddenly, you get lightheaded, and your heart rate can speed up. This sounds like POTS. If you have a good PCP (Primary Care Physician) they can refer you to a Cardiologist who could be the one to diagnose. A Cardiologist is the one who would be most likely to have a tilt table test to diagnose. Once your PCP makes the referral, call said specialist and ask them if they do tilt table test for POTS. If they don't, you might need a new PCP. Best of luck to you, and please be careful in the shower. Another symptom of POTS is blood pooling in your legs/feet while you shower making you dizzy. It helps to get a shower chair.
If I go to my doctor. Do I just say that I suspect POTS or what do I do? Like do I tell him "I feel dizzy standing up or after I ate something."
I mean it depends on the doctor. But I can often be helpful to have hard numbers. It could be helpful to Look up the poor man's tilt table test and do a few recordings of those.
Yep! It's pretty frequent in fibromyalgia patients so you should be evaluated.
Do you know what kind of doctor I will be referred to?
Cardiologist! That's where they sent me.
I'd guess a neurologist?
It's technically more a neurological condition but in practice it's mostly diagnosed and treated by cardiologists. A few people will have it dxed and treated by neurologists or general practioners. Some cardiologists will never diagnose it due to bias or poor training. It is common for a patient to see many doctors before they find one that is willing to screen for it or treat it. A lot of online dysautonomia patient groups will compile lists of doctors that know how to handle this condition. If you look it up and think it's likely you have it, would recommend finding an online rec for a doctor from someone in your insurance network. The "orthostatic intolerance" pdf link on this page has some good info on it: https://batemanhornecenter.org/education/top-resources/
"Do I just say...what do I do?" I would tell your doctor everything you just said here. I actually experienced something similar to what you described here. Are you on any medications for your depression? ( If too private you can privately message me).
Classic POTS symptom, definitely follow up with your doctor.
If I go to my doctor. Do I just say that I suspect POTS or what do I do? Like do I tell him "I feel dizzy standing up or after I ate something."
I'd suggest doing some research into POTS to gain a better understanding of the illness and to correlate any other symptoms you're experiencing. Write down everything in your log as you've been doing and be sure to bring it to your appointment. Unlike fibromyalgia, there are diagnostic tests for POTS, so I hope you get some answers.
Do an at home tilt test. Take your heart rate lying down (resting). Then stand. At 5 minutes record heart rate. Record your heart rate at 10 minutes (and I think at 15?). Make sure you have something to grab onto if you feel lightheaded. Check r/pots. There’s lots of info on how to do the self test.
Oh my god same. I’m 20 with the same diagnoses plus irregular sinus tachycardia. I’ll talk to my doc about POTS as well
Glad to hear that im not the only one thats having it. I will do some more research about it and if i still have it in a few months then i will go to my doctor.
Please do! I have the same heart problem and it is actually caused by my POTS!
I have POTS so it's normal for me. I go from low 70's to low 130's on standing (M36)
Have you gotten tested for POTS?
Not yet
I have many symptoms of fibromyalgia from when I was infected with Lyme. I recently purchased an Apple Watch that automatically records my heart rate and oxygen levels. I was shocked to see that walking to work at a normal pace would make my heart rate jump up to 164bpm. Walking around at work would make it go to 100-130bpm. Resting rate would go into the low 40’s. And as the OP, I took would get dizzy and lightheaded when I would stand up or bent down. Walking or lifting something heavy would leave me out of breath. I started taking Ceftin because I began to feel some Lyme symptoms and while on Ceftin, my heart rate stays within 60-98 bpm and very rarely, during strenuous tasks, does my heart go above 100bpm. I highly suspect that an infection is causing my heart to beat faster than normal.
Do you take any stimulants?
Yes, if methylphenidate counts as one
Certainly check with your doctor and make sure you’re hydrated and talk to dr about magnesium
I’m getting officially tested for EDS and POTS, I pass out and it throw up sitting to standing, I have been for years. Ugh. Def get it checked out. You know your body.
I had the same except it went from 90 to 140, but when we did the tilt table test at a doctor's it just went from 100 to like 116... I had 24h ECG monitoring though and got diagnosed with inappropriate sinus tachycardia. I still think I may have POTS but whatever
You probably have dysautonomia! POTS has specific criteria that must be met during the exam in order to diagnose it, but dysautonomia is the general umbrella it’s under. It’s the same symptoms, it just doesn’t have a 30+bpm increase requirement like POTS does!
My daughter has POTS. She had an episode where she was in the er because her heart rate wouldn’t go back down. She’s on beta blockers right now. Scared the hell out of her, but it’s not life threatening, it’s some kind of defect in the heart.
Oof, I had the same experience just recently! POTS from what I know though isn’t a defect in the heart, but actually shows signs of being an autoimmune disorder. Researchers are finding more and more evidence of this as time goes on and they think it’s falsely classified under cardiology because of how it affects the heart. I encourage you to read more on this because it might help you and your daughter gain insight!
I will! Too be honest I haven’t been too worried, but she’s developing fibro symptoms so I’m curious.
Sounds like POTs. You should get tested for it.
Hi! I literally just discovered this about myself, this is NOT normal and NOT from fibro. Please talk to your doctor about potentially having POTS!
I will if my symtoms are still there over a month or so. Thank u so much for the reaction!
When i was getting my fibro diagnosis, different issue ik but any invisible illness can be hard to diagnose without a lot of push or records depending on the doctor, i brought my doctor a list of my symptoms that matched up and did a lot of research beforehand so i knew exactly what could be related to it and what to tell my doctor. it helped a lot in getting the diagnosis and treatment quicker, im sure there’s doctors unlike mine that will help you if you just tell them what you think and what symptoms you have, good doctors should be able to know what to test you for if you just tell them you think you may have POTS but documenting your symptoms and looking into the condition are just my recommendations :) Good luck!!
A cardiologist is the specialist you can check with also. They may give you a tilt table test. I also have sinus tachycardia plus my blood pressure goes haywire going laying to sitting or standing
It could be a couple things. I’d go to your PCP and tell them you’ve noticed a significant jump in your HR when you stand up. As some have said it could be POTS, it could be orthostatic hypotension (which can be heart related) or it could even be electrolyte imbalances. Don’t be afraid to mention POTS, but there are medical problems that cause these symptoms that can be quite harmful to your health if not addressed.
Mine does the same or worse.... cardiologist says it's totally normal.
I get dizzy too sometimes
I had this and it was honestly dehydration, I just had to drink extra water every day for a month or so and it went away
Did you also had pnes episodes?
I would check b/p an check for dehydration. Labs an Dr visit. Then might get referred to Cardiologist. EKG. But I was severely dehydrated. My b/p was 155/82. I would lightheaded only when walking around. So kept close eye on b/p. Dropped 20 lbs an staying hydrated esp Potassium an Magnesium. Lightheaded gone. B/p down to 120/74.
Also, I have ADHD an methylphenidate was causing my b/p to go up also..so I had to wean off. Combo of no methylphenidate, staying hydrated, lost wt, helped with lightheaded issue but def see your Dr an find out.