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Am I Expecting Too Much?


Kat

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I finally have my blood pressure and heart rate under control with Metoporlol. Why is it that after being upright for a minute I still feel horrible. Shaking, weird vision, dizzy, clumsy, speech not as clear? I tried Midodrine also and there was no change. I don't get it. Was I just expecting too much?

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Kat,

Sorry to hear that your going through this. I too am on Metoprolol and have been for 2+ years. Everyone is different and reacts/responds differently to medication. In my experience, unfortunately I have found no miracle pill (I wish :) ). I find that for myself, my vitals can be absolutely normal, yet I still feel like poop, go figure. I feel exactly as you explained. Some days are better, while others are worse. I wish I had some answers for you. Just know that you are not alone in any of this. I would hazard to guess that there are many on this forum that experience the same thing :( . Sometimes it's just a matter of listening to your body, knowing your limits and trying to find your "new normal".

Hoping you feel better.

Be well,

Bebe

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I'm having this same problem! My dr doesn't understand why I'm not saying I feel better because of #s he's seeing. It's very frustrating. I can't explain it. He think its cant be pots but I think it can be pots.

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Are you on any other medications that could be causing problems? It's great that your blood pressures and heart rate is beginning to stay on target. I would think that would be a good sign. Could you be deficient in iron, D, or B vitamins?

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I had all of my vitamin levels checked last time I was in the hospital and they were all up but still on the low side. That is the first time in two years so overall I thought things were going to be looking up. I called and asked the doctor about it and he said that all does not make sense with dysautonomia. I am not asking to got for a jog around the block. I want to make dinner for my family without feeling like I am going to pass out. I feel exactly like I did before the Metoprolol minus the high blood pressure standing and the crazy high heart rate. I am grateful for that....but still. Have to wonder if they or I am missing something.

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This is my understanding, so I could be wrong:

A beta blocker like Metroprolol blocks the beta receptors that catecholamines are binding to in order to tell your heart to go faster. However, whatever your underlying condition is, is still going on - for example if you're producing excessive amounts of norepinepherine, the beta blocker is stopping that excess from causing your heart to race. However, whatever else that excess is doing is not being fixed. In other words it's not stopping the production of the catecholamines, just stopping them from racing your heart.

I too am on a beta blocker, atenolol, and while it helps lower my heart rate during the 4-6 hours after I take it, it also does not resolve my other symptoms. It makes me tired too!

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Do you do any type of an exercise program? Do you wear compression stockings? I'm wondering if you are going to have to retrain your body to get use to being up for a longer period of time. Would you need to be more hydrated while on this medication? My thought is if you can stand up and walk for 30 seconds without getting dizzy or fainting, maybe you could do this everyday and increase by 15 to 30 seconds. I know this seems a slow way of building up and may really sound like a stupid ideal. Just trying to be helpful. It's hard to get up and go again if medication or illnesses caused you to slide back in progress.

Here's another thought. Would you do better on a lower dose? Is it possible to try a different beta blocker? Maybe a different beta blocker would work better.

My son is no longer on his florinif and his blood pressures are staying up. However, his heart rate is probably staying too high, In the afternoon it stay's in the 100's to 120 when he is sitting in a recliner. I'm afraid the cardiologist is going to want to try a beta blocker next. After hearing this post about beta blockers, I'm dreading our weekly phone call. His tremors have not stopped either so he is not able to go to physical therapy. So he will be starting up an exercise program when tremors stop.

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Dave and Foggy, that makes total sense to me. It is treating a symptom but not so much the cause...therefore the heart rate is down but you still have the underlying issue going on. Do either of you have any ideas on tests to request being done? When I was i the hospital they did check my nori levels but I am pretty sure it was done wrong. They woke me up...drew blood and then had me stand for 2 minutes and did another draw.

Looneymom, actually that is a good idea. I will try doing that. I just have to feel like I am doing something. I feel like I am on a slide downhill. I also have tremor so the exercise aggravates that. I know that the beta blocker gets a lot of negative reactions...but it has helped my BP and HR. I hope things turn around for your son. This is so hard to deal with as an adult. I can't imagine being a kiddo.

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Kat,

I am in the same boat as you. My vital signs look great, but I still get symptoms with my vision, dizzyness, and just feeling out of it. I have a hard time thinking about what word I want to say.....it is frustrating. I can't help but think we are missing something.

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Kat

Have you always had the tremor? Could it have started after a certain medication? I really want to know if it got worse you started the beta blocker. I have been reading some old post about tremors. In some post it stated the beta blocker helped with the tremor but in others it made the tremor worse. You might want to do a search on tremors. I've read so many post lately and I have come to the conclusion that a tremor is part of POTS.

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Badhbt, Can I ask what kind of vision issues you get? I feel like every time I go to the doctor, I am adding another symptom. Crazy. After reading a couple of posts on this tread I want to figure out the cause so there is some hope of improving.

Looneymom, I absolutely think the tremor is because of POTS. It is when I am standing or in certain positions. I did see that tremor is sometimes listed as a symptom of POTS and sometimes not. It is not because of medication as I was on none when it started. I was getting tremor when standing and overtime POTS reared its ugly head. I was going to tell you in the earlier post that when I started the beta blocker it did help the tremor in my hands. I don't think it is helping as much but I know it did in the beginning. It was enough that even if it had not helped my HR and BP, I would have been pleased. It has made me more tired then usual but at this point it still has more benefit then not.

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I think it's because a lot of the medications we take are just band aids for symptoms of a larger problem. The root cause of all the symptoms is likely to still be there even if we've managed to cover it up with medications.

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Kat,

My vision has been one of my main symptoms. It was really bad in the beginning i was seeing almost double. Now my vision is like my contrast button is off. Certain colors are almost blinding ( like the neon orange construction signs ) I also will have to use reading glasses some days other days I don't. Certain patterns (like a busy rug) will have motion in them. I have a hard time describing what I am seeing, but I just know it is off. I had 20/20 vision before all of this.

I did do 20 weeks of vision therapy and I have had a lot of improvement. I can't say if that is what helped me or not. It could have just been time. I did like going because if made me feel like I was doing something, and they were good at making you use your brain and visual system which were both of my problem symptoms

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Do you have dry eye by any chance? My vision is no long crisp. Patterns move and sometimes I see something like heatwaves. I did try some visual therapy but did not notice change. I also now wear reading glasses. I went to a neurologist opthomologist at one point and I am thinking I will go back and see if he comes up with anything else. Sometimes it feels like my eye muscles are tired.

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I just wanted to throw Sjorgens Syndrome out there as something for people with Dysautonomia, dry eyes, and vision disturbances to look into. Especially look into it if you also have muscle/joint pain without swelling or swallowing issues. I'm no expert on Sjorgens, I just know someone with POTS who has it.

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My neurologist still thinks in order to have dysautonomia, there must be something neurologically wrong, so he continues to see me every 6 months. I always come up with interesting questions for him, but I'm convinced that no matter how many medications you are on, you will still have sick days, because they are just palliative, not a cure. You just need to enjoy the days you have that are good, exercise, try to eat right (not a lot of sugar and no caffeine), and do the best you can to find a solution to your own problems. Unfortunately, it requires research on your part, and many doctor appointments!! Sjorgen's, as mentioned in this thread, needs a lip biopsy to be definitive. I just had a blood test, and my neurologist told me that neither is very accurate in diagnosing it. I believe with all my eye issues, I also have it. Dry mouth with constant bacterial infections on my lips, poor teeth and gums, severe dry eye with corneal ulcers, edema, and cloudiness, etc.

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I definitely know that I have something neurological going on. I just wish I understood it better. I think I was thinking that if they got the HR and BP under control then the other things would go away or improve. I am not sure why I thought that way. I still have symptoms being upright...but my HR and BP are much better. You are right it is necessary to do your own research. I have learned so much here!

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Kat I also have with the help of medications a controlled heart rate and a somewhat controlled blood pressure but that did not make as significant an improvement as I had hoped for with regards to my pots symptoms. I think largely because the tachycardia and blood pressure changes are just a response to a much more complex problem. I have found though that wearing compression devices has made a big difference.

Janet

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http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

You might want to read this consensus criteria for ME (Myalgic Encephalomyelitis aka CFS). Not to keep beating a dead horse, but for those of us who have a lot more symptoms going on than just a high HR when we stand up and who aren't better when we address those issues, you might want to check out other possible issues. This is one of those other possible issues.

This link has the diagnostic criteria listed so you can see if you meet the criteria yourself. It may explain why you don't feel better by just addressing the one aspect of your disease.

Personally, the beta blocker and midodrine helped with parts of my problems. But I still needed to address many other aspects which weren't helped at all by those two meds.

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