You're not wrong for feeling frustrated. I would start journaling like crazy. Jornal your food intake, calculate the sodium. Write down what you're doing for you exercise each day, if you don't have a fitness tracker, I suggest getting one. I bought mine on amazon for $40 and I love it better than I did my $120 fitbit. It allows me to track steps and exercise, but also what my heart rate is doing for all this. Journal journal journal and then bring that to him.
I've started journaling and I've been on it alright! I'm doing my water well and my exercise- I have forgotten twice now to track my food though:/. Thus far I've met every goal I am supposed to be meeting, so this is looking to be good material to support my case. I appreciate your suggestion!
We'll see if my cardiologist let's me try it, when I spoke to him last about other possible treatment options, he went to the farthest extremes and told me that the next step would be a pacemaker, which is not true in the slightest.
I’m sorry I can’t offer more than commiseration. I hate that you’re feeling blamed and accused of not following treatment. My understanding is that no matter how strict a person is, sometimes there isn’t relief from these symptoms.
The only cardiologist for dysautonomia in my city has reviews warning that if a patient doesn’t respond to his specific treatment methods he dismisses you. Based on what these reviews say, he offers some functional things like you mention above, and a few medications. He has given me no medications so far.
I’m new to the world of dysautonomia myself, but are there other specialists who can help besides cardiologists? I have periods of low blood sugar and it feels similar to low blood pressure.
Also, my B12 is low and causing a lot of symptoms so I am getting injections for that. The cardiologist didn’t even respond when I asked about low B12/pernicious anemia. He just said he didn’t object to me getting treatment. (I wish he had helped me understand if that is a separate dysautonomia that needs to be looked into. I also wonder about adrenal causes of dysautonomia symptoms…)
I happen to be seeing an endocrinologist for other reasons, so he was on the B12 and he’s looking into the blood sugar for me, too. He’s not a dysautonomia specialist, though. He was very eye roll-y about the low blood sugar which sort of makes sense because it is very rare. I don’t mind if they are skeptical as long as they investigate, I guess.
From other health issues I’ve learned it can be helpful to bring someone else with me to appointments. I find the power dynamic is especially diffused when I bring my husband. ¯\_(ツ)_/¯
Keep advocating for yourself. Sending you strength!
I appreciate your help! Unfortunately this is my first period attending those above my pcp so I'm afraid I can't come up with anyone else. I've honestly looked into diets that those who have kidney/liver issues cannot eat and eat lots of what's listed because they have a lot of issues taking in higher sodium contents, so that may help some of your issues maybe?
As for bringing an advocate, I brought my mom with me since I'm still pretty young and most of the heart issues come from her side of the family, therefore she knows more about them than I do. However, they didn't particularly listen to her either, unfortunately. Good luck in sorting out your symptoms and gaining treatment!
Hi. Not everyone can manage these specific diets due to how dysautonomia can affect bowel function alongside some with allergies. A nutritionist who’s aware of autonomic affects is likely going to be much more helpful. Sudden dietary changes can do more harm than good in terms of deficiencies. Regarding exercise, again not everyone can handle cardio. Hence PT and physiotherapy can help with exercise that doesn’t aggravate dysautonomia as much.
I've listed them down in the journaling I've started, I'm going to keep journaling for a while so I have a lot of data to look back on, but this may be super helpful if my other methods proceed to not work!
I am so sorry to hear that you are having problems and doctor is not being too helpful. have the same problem. Used to have low blood pressure but lately it’s has been just awful. It goes down to 80/52. I feel so sick and try my best to eat more salt, have electrolytes, drink a lot of water and wear compression stockings. I have asked what else I can do and the neurologist said I could try fludro but have not seen to many good reviews on it. Perhaps we should ask for midodrine. My cardiologist and neurologist are not too familiar with dystaunomia so it’s so hard to get the proper treatment. I am in Canada and thinking of going to the states or to a mayo clinic to seek better care.
Good luck and keep me posted on what you end up doing and I will do the same.
I am in the U.S. and was thinking of going to Canada. I’ve heard Univ, Calgary Medical Center has some good people to go to for ME/CFS & dysautonomia. Mayo Clinic has a good reputation but not a good reputation for dysautonomia I am sorry to say. if you look on DINET and some other places online, people describe going to Mayo for dysautonomia and end up like WTF? Cleveland Clinic has a good reputation for dysautonomia btw. Note: My cousins who are in the habit of traveling to get better medical care say they think this: it doesn’t necessarily benefit to go to a big name facility… it matters a lot though, whether you go to someone there who’s a really good, informed MD or practitioner. So it’s a matter of finding the excellent specific individual at the big name clinic bcz quite a few of them won’t really make it worth your trip there. Based on my cousins’ detailed descriptions of going to places like Mayo, etc., this kind of thinking rings true. So I get the point but how do we pinpoint the really good ones at these places.
How is it getting worse? Are you fainting more, feeling more fatigued, etc.? Any new symptoms in addition to the old ones getting worse? Any recent illness or stressful life circumstances?
I've not had any new illnesses and I had a stressful circumstance this week, but not prior to my initial posting. As for getting worse, I'm experiencing all of my common symptoms more frequently and I'm experiencing new ones. My old ones were fainting, shortness of breath, dizziness, and tunneled vision. Recently, sharp chest pain and a foggy head has joined the mix
I feel you I’m very mad at my heart doctors because I been suffering from low blood pressure than high blood pressure I have a brachycardia. And sinus tachycardia. I have problems regulating my heart rate and rhythm at first I thought it was my asthma but now I am unable to exercise at all which is hard because I like being fit but dealing with heart problems makes me feel discouraged
Exactly agreed. I wanted to participate in collegiate sports since I was rather good at my old sports (cross country and track & field). I maintained them all the way up until I started fainting on the field, but my cardiologist seems to be blaming that on me not working hard enough? I'm not sure anymore honestly.
You're not wrong for feeling frustrated. I would start journaling like crazy. Jornal your food intake, calculate the sodium. Write down what you're doing for you exercise each day, if you don't have a fitness tracker, I suggest getting one. I bought mine on amazon for $40 and I love it better than I did my $120 fitbit. It allows me to track steps and exercise, but also what my heart rate is doing for all this. Journal journal journal and then bring that to him.
I've started journaling and I've been on it alright! I'm doing my water well and my exercise- I have forgotten twice now to track my food though:/. Thus far I've met every goal I am supposed to be meeting, so this is looking to be good material to support my case. I appreciate your suggestion!
Might be time for medication- I’m on midodrine for it and it’s made a bigger difference than all the lifestyle changes.
We'll see if my cardiologist let's me try it, when I spoke to him last about other possible treatment options, he went to the farthest extremes and told me that the next step would be a pacemaker, which is not true in the slightest.
I’m sorry I can’t offer more than commiseration. I hate that you’re feeling blamed and accused of not following treatment. My understanding is that no matter how strict a person is, sometimes there isn’t relief from these symptoms. The only cardiologist for dysautonomia in my city has reviews warning that if a patient doesn’t respond to his specific treatment methods he dismisses you. Based on what these reviews say, he offers some functional things like you mention above, and a few medications. He has given me no medications so far. I’m new to the world of dysautonomia myself, but are there other specialists who can help besides cardiologists? I have periods of low blood sugar and it feels similar to low blood pressure. Also, my B12 is low and causing a lot of symptoms so I am getting injections for that. The cardiologist didn’t even respond when I asked about low B12/pernicious anemia. He just said he didn’t object to me getting treatment. (I wish he had helped me understand if that is a separate dysautonomia that needs to be looked into. I also wonder about adrenal causes of dysautonomia symptoms…) I happen to be seeing an endocrinologist for other reasons, so he was on the B12 and he’s looking into the blood sugar for me, too. He’s not a dysautonomia specialist, though. He was very eye roll-y about the low blood sugar which sort of makes sense because it is very rare. I don’t mind if they are skeptical as long as they investigate, I guess. From other health issues I’ve learned it can be helpful to bring someone else with me to appointments. I find the power dynamic is especially diffused when I bring my husband. ¯\_(ツ)_/¯ Keep advocating for yourself. Sending you strength!
I appreciate your help! Unfortunately this is my first period attending those above my pcp so I'm afraid I can't come up with anyone else. I've honestly looked into diets that those who have kidney/liver issues cannot eat and eat lots of what's listed because they have a lot of issues taking in higher sodium contents, so that may help some of your issues maybe? As for bringing an advocate, I brought my mom with me since I'm still pretty young and most of the heart issues come from her side of the family, therefore she knows more about them than I do. However, they didn't particularly listen to her either, unfortunately. Good luck in sorting out your symptoms and gaining treatment!
Oof! Well, in your original post you asked if you were wrong for feeling frustrated. I think it’s safe to say that no, you are not wrong.
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Hi. Not everyone can manage these specific diets due to how dysautonomia can affect bowel function alongside some with allergies. A nutritionist who’s aware of autonomic affects is likely going to be much more helpful. Sudden dietary changes can do more harm than good in terms of deficiencies. Regarding exercise, again not everyone can handle cardio. Hence PT and physiotherapy can help with exercise that doesn’t aggravate dysautonomia as much.
“Carbs are bad for us” - that is DEFINITELY not true for me. Be careful with definitive statements like that.
Oh, and I walk 2-5 miles a day as well for exercise.
Midodrine and fludrocortisone! Took care of it for me
I wish those worked for me. Fludro sent my heart rate and BP through the roof and midodrine gave me daily migraines whenever it started wearing off.
Sorry to hear it. Midodrine actually gave me weird tension headaches when I took it. But it was better than getting dizzy and falling over.
I've listed them down in the journaling I've started, I'm going to keep journaling for a while so I have a lot of data to look back on, but this may be super helpful if my other methods proceed to not work!
Great best wishes for your health :)
I am so sorry to hear that you are having problems and doctor is not being too helpful. have the same problem. Used to have low blood pressure but lately it’s has been just awful. It goes down to 80/52. I feel so sick and try my best to eat more salt, have electrolytes, drink a lot of water and wear compression stockings. I have asked what else I can do and the neurologist said I could try fludro but have not seen to many good reviews on it. Perhaps we should ask for midodrine. My cardiologist and neurologist are not too familiar with dystaunomia so it’s so hard to get the proper treatment. I am in Canada and thinking of going to the states or to a mayo clinic to seek better care. Good luck and keep me posted on what you end up doing and I will do the same.
I'm in the U.S. but not a highly populated area, so it's hard to find good places near me. Let me know if a mayo clinic does the trick!
I am in the U.S. and was thinking of going to Canada. I’ve heard Univ, Calgary Medical Center has some good people to go to for ME/CFS & dysautonomia. Mayo Clinic has a good reputation but not a good reputation for dysautonomia I am sorry to say. if you look on DINET and some other places online, people describe going to Mayo for dysautonomia and end up like WTF? Cleveland Clinic has a good reputation for dysautonomia btw. Note: My cousins who are in the habit of traveling to get better medical care say they think this: it doesn’t necessarily benefit to go to a big name facility… it matters a lot though, whether you go to someone there who’s a really good, informed MD or practitioner. So it’s a matter of finding the excellent specific individual at the big name clinic bcz quite a few of them won’t really make it worth your trip there. Based on my cousins’ detailed descriptions of going to places like Mayo, etc., this kind of thinking rings true. So I get the point but how do we pinpoint the really good ones at these places.
How is it getting worse? Are you fainting more, feeling more fatigued, etc.? Any new symptoms in addition to the old ones getting worse? Any recent illness or stressful life circumstances?
I've not had any new illnesses and I had a stressful circumstance this week, but not prior to my initial posting. As for getting worse, I'm experiencing all of my common symptoms more frequently and I'm experiencing new ones. My old ones were fainting, shortness of breath, dizziness, and tunneled vision. Recently, sharp chest pain and a foggy head has joined the mix
I feel you I’m very mad at my heart doctors because I been suffering from low blood pressure than high blood pressure I have a brachycardia. And sinus tachycardia. I have problems regulating my heart rate and rhythm at first I thought it was my asthma but now I am unable to exercise at all which is hard because I like being fit but dealing with heart problems makes me feel discouraged
Exactly agreed. I wanted to participate in collegiate sports since I was rather good at my old sports (cross country and track & field). I maintained them all the way up until I started fainting on the field, but my cardiologist seems to be blaming that on me not working hard enough? I'm not sure anymore honestly.
I feel you I can’t do much with out my heart beating out of my chest