Finally diagnosed

[Bailee]

After a long four months of going back and forth with doctors. I had a follow up visit with Cleveland clinic and I was diagnosed with POTS. I did a poor mans pots test (lay down 5 minutes/ sit up 5 minutes/ stand 5 minutes). From laying to sitting by heart rate went to 89 to 118 and when I stood up it went to 134 within seconds. I was very symptomatic so the doctor had me sit down to avoid passing out. I felt validated because I’ve been in a wheel chair unable to walk to stand due to my heart rate rising so fast and not coming back down. The doctor understood why I was feeling so awful just from my vitals. It felt good for someone to finally listen. I was put on metoprolol 25 mg once a day, but he stated if it makes my symptoms worse then the next step is ivabradine . The metoprolol seems to be making me less lightheaded all the time but when I stand I still get a little bit of heart palpitations but not nearly as bad as before. I started physical therapy and at first the hospital in my state told me that they had someone trained in pots but it turns out I’m her very first patient. Long story short she wants me to my bike every other day which I’m not against however I’m concerned with the heart rate ranges she’s trying to get me to. I’m supposed to go on the bike every other day 25 minutes and keep my heart rate at 169 which for someone who couldn’t even stand without nearly passing out is a lot. She also want me to do a session of steady state with her by the end of the month where my heart rate with need to stay in the 190’s for 20 minutes. How do I bring up these concerns . Has anyone whose done physical therapy with pots started of this aggressive? 

[MikeO]

Hi @BaileeGood to hear you got a diagnosis. I would question the high rate hr test. If i were to have the 190's on a stress test they would abort it. 

[maggs]

@Bailee Without knowing your age, I'm not sure how high of a heart rate is really safe for you. While it isn't entirely accurate/perfect, the typical way your max heart rate is calculated is 220 minus your age. For example, I'm 37 years old so my max heart rate is 220-37=183 BPM. The CDC explains it well here: https://www.cdc.gov/physicalactivity/basics/measuring/heartrate.htm 

I've had POTS for a decade, and while everyone's experience is different, my POTS specialist told me to start exercise slow and as tolerated, and had me stay around 50-70% of my max heart rate initially. Personally, I found that manageable but difficult while I adjusted to my medication, but in time it got easier. Metoprolol helped, but we swapped to ivabradine once it came out a few years ago and, for me, it's been much better at controlling symptoms; I've been able to increase my physical activity significantly with it. But, again, everyone is different. The couple of other people I know with POTS do quite well with metoprolol. 

My advice? Ask questions if you're worried- and use the CDC's link as a guide. But ultimately trust that your body will communicate when something is too much. As someone who has done years and years of PT, a good physical therapist will listen and adjust what they're asking you to do based off what you communicate about how an exercise makes you feel. If it's too hard or hurts they should tone it down. If it's too easy they should turn it up. But they always use their initial evaluation and doctor's recommendations to come up with a starting point- and I bet that's what your PT is doing. Just because their starting point/initial plan sounds difficult doesn't mean it will be. But if it is just let them know and it can be adjusted so you can tolerate it. Hope that helps!

[Pistol]

@Bailee - I have had PT from a therapist not at all familiar with POTS. They made me stand at the sink 3 times in a row, each time until i became symptomatic. Every time it was around 2 minutes, so that is what they began with. I am extremely exercise intolerant ( even a 5 minute walk is too much for me ) and - taking into consideration that you have been in a wheel chair - I would start very slowly. I am wondering if the therapist wants you to work UP to 25 minutes on a bike, not expect you to do it right away? It is very important that you start exercise slow, and condition your body to tolerate exercise. What works best for me personally is a rowing machine, it exercises many muscles at one time. I used to be able to do 30 reps a day but since I have been sick and am deconditioned I am only able to do 5 reps at a time. 

If you are concerned about the exercise the PT wants you to do then speak up, YOU decide what you can do. A good PT will push you to your limits, however with POTS that is never a good idea. We need to carefully listen to our bodies and stop BEFORE we push too hard - or else we will pay for it with worse symptoms. Here is an article that you may find helpful

Here is an excerpt about PT

Physical Therapy

Author’s note: the following information was collected in an interview with Ben Rittenhouse, DPT

1a) What are exercises or methods you recommend to prevent or combat deconditioning for someone who is exercise intolerant to upright exercises? 

1b) What exercises will strengthen leg muscles and venous return? 

Deconditioning is a definite concern with patients that have POTS. In general, exercises that engage the larger muscle groups of the lower body will enhance venous return.  Even simple exercises such as ankle pumps may be a starting point for some patients with a low tolerance. The goal is to work up to activities such as recumbent biking and eventually a walking or swimming program. Exercise is one the best ways to promote venous return and begin to allow the body to tolerate more upright postures. Peripheral veins have one-way valves that direct blood flow back to the heart. As muscles are engaged, they act as a pump to help that process. A progressive exercise program is one of the best ways to combat deconditioning.

2a) CFS (Chronic Fatigue Syndrome) can be a companion disorder to POTS - do you know of any methods used in your occupation to improve wakefulness and energy?
2b) POTS affects both HR and BP - are you aware of any interventions to improve circulation to the brain 

Exercise increases blood flow to the brain as well as the muscles. This helps enhance oxygenation to the brain and can improve alertness. Research is showing us that exercise can improve mental clarity, creativity, memory, and mental health. Several years ago, the American College of Sports Medicine coined the phrase “Exercise is Medicine.” This is very true when addressing symptoms of POTS. Exercise can be one of the best “medicines.”

3) Elevated norepinephrine levels cause a constant state of fight-or-flight, which causes a lot of tension in the muscles and often causes coat hanger syndrome in POTS patients. What treatments can patients do at home to relax the muscles without using medications? Particularly treatments that are not dependent on using cold or hot techniques since patients are frequently cold and heat intolerant.    

People may find that they can have relief with techniques such as deep breathing exercises or meditation to help address muscle tension and stress associated with POTS. Overall, resting in a recliner is better than lying down flat as the goal is to slowly and steadily increase the tolerance to upright positions. However, cervical pain may need to be examined by a healthcare professional to rule out other musculoskeletal contributors.

 4) What can you recommend for patients who want to exercise but have orthostatic hypotension?  

Although this can pose a challenge, I would encourage patients to start slow, find their baseline and work up from there. It is important to have a good home blood pressure cuff to be able to monitor the BP and also pay extra attention to symptoms to maintain safety. Often patients are hesitant to exercise with orthostatic hypotension but exercise is usually one of the best treatments.

 5) Does trigger point release cause relaxation of the muscles or does it tighten them?  

Often trigger point release can be very effective in helping muscles relax. However, people have different levels of tolerance to techniques such as TPR. Due to the “fight or flight” nature that you mentioned, I find this is sometimes difficult for patients to tolerate.  Instruments such as a Theracane can allow patients to be in control which can help reduce adverse effects in POTS. In some cases, dry needling can also provide relief from trigger points as well. 

Overall, exercise and physical therapy can be great treatments to address POTS. I would recommend that anyone who struggles with positional tachycardia be assisted in beginning a program by a physical therapist. A progressive exercise program can be very helpful and effective in addressing positional difficulties and often give someone handles in managing their symptoms.

[GasconAlex]

A point about exercise bikes is that the sit down models with full seat are much easier if you have problems standing than the traditional push bike type. If you can start sitting you can get the muscles moving and working well before having the stresses of being vertical. 

There's even powered recumbent bikes (used mostly for serious brain issues) that can turn the pedals for you if you find it too difficult. (Your feet get strapped to the pedals and they turn slowly and you can help some of the cycle if you are able)

[Bailee]

Hello I’ve been on ivabradine for the past two and a half  weeks. It seems to be working/ helping my pots I’m walking around I started off wheelchair bound and it reduced my heart rate. However these past two days I’ve been more tired than usual ( I had precut my ivabradine pills for a week  last Monday  ) since I have to take 2.5 mg twice a day. I looked up if these have any effects and it says that if exposed to moisture or humidity the pills could lose there potency. I can’t think of anything different I’ve done . Maybe I’m just have a rough week, I know recover isn’t linear. Any tips?

[MikeO]

1 hour ago, Bailee said:

( I had precut my ivabradine pills for a week  last Monday  ) since I have to take 2.5 mg twice a day. I looked up if these have any effects and it says that if exposed to moisture or humidity the pills could lose there potency.

I read the same thing in regards to me splitting my amlodipine to far in advance. To be honest i am not sure if it makes a difference But i only now split two days worth.

[Bailee]

My blood pressure was normal I’ll left numbers below however I’m still getting lightheaded. Is there a difference between low blood volume and low blood pressure? I’m on ivabradine so my heart rate doesn’t go up as much but the blood still isn’t reaching my brain I guess. Please help I’ve been miserable the past week and unable to even stand and walk for long .

 

Sitting 5 minutes blood pressure 105/73

 

Standing for 1 minute: blood pressure 102/72

 

5 min standing 

had to sit early Dizzy lightheaded fatigue Blood pressure 109/85

[Bailee]

Hello I’m needing some advice? I was diagnosed with pots this November. I went from wheelchair bound to being able to walk around my house with a walker and short distances when I rarely leave the house. I’m on corlanor 5mg in the morning and 2.5 mg in the evening with 2.5 mg of midodrine twice a day. I was also given a cardio plan from the Cleveland clinic where I receive my treatment. I’m on my last block and I’ve graduated from stationary bike to treadmill 2-3 mph and with controlled heart rate. I say all this because even though I’ve improved and had significantly less palpitations, I’m still struggling with walking. I get lightheaded when moving around a lot still and especially when I go out to events or the eat and I have to walk around even the smallest of distances I get lightheaded spells. On top of having to start walking with the cardio plan I was given I wear compression socks and even when I manage to get through the workout for the rest of the day I can’t move around much because my lightheaded/dizziness’s gets so sad with a migraine. I have an imperson appointment with my pots team tomorrow? Is there anything I should ask? Anything you would suggest that has helped some of you? I just can’t understand how my palpitations got better but the lightheadedness seems to be persistent?

[MikeO]

On 12/4/2021 at 3:56 AM, Pistol said:

dry needling can also provide relief from trigger points as well

I am going back into PT Again and they are going to be doing some dry needling. I am a bit nervous. I just hope it does not cause a flare up.