Aa
update!!! I feel like I'm finally getting somewhere!
Hello everyone!
Just wanted to update you all on my latest. I had a 24 hour blood pressure and heart rate monitoring done last Monday. The machine tested me every 20 minutes during the day and every 40 minutes during the night, needless to say I got very little sleep. When they hooked me up to this machine, the technician doing this had to ask a whole bunch of questions, as I was filling him in on all the details, he was sooo interested, he apologized because he said that my case was so interesting but he didn't want me to feel offended as it was about my health, I actually thanked him because he was taking the time to go over this.
Anyway, tonight I got a call from the doctor who analyzed the 24hour BP records, he is an Internist and a specialist on kidneys (I forget what the name of that is), he called me at home at 6pm and spoke with me for 40 minutes! He said that my case is quite 'unusual', that my blood pressure and heart rate do not follow a typical pattern which is what makes it hard for some 'younger' doctors to be able to treat, but that he was an older doctor and felt confident about how to treat me, when I heard this I felt like jumping! He said that he wants to give me low doses of Clonidine to block my sympathetic system which would lower my blood pressure and stabilize my heart rate.
During the 24 hour testing my highest bp was 167/126, my lowest was 126/75, my highest heart rate was 120 and the lowest 87. I told him that my heart rate upon slight exercise would go to 160 within a few minutes of warm up which is what I want to manage better so I can do more stuff. He said this medication should do that, I sure hope so!
He is faxing this information to my family doctor tomorrow and he said by Monday my Dr. should know if she wants to be the one treating me, he is going to add to his letter that if she wants, he can take me as his patient, I was so impressed by this offer.
He also said that because they have to do it so gradually that I won't notice changes very quickly, he said this is going to take weeks/months before I can start seeing a change, but the best way to do it is like that so that the changes won't make me more sick too.
Anyway I thought I would share my exciting news and hopefully I'll be on meds next week and we'll see how that goes!
Karin
Just wanted to update you all on my latest. I had a 24 hour blood pressure and heart rate monitoring done last Monday. The machine tested me every 20 minutes during the day and every 40 minutes during the night, needless to say I got very little sleep. When they hooked me up to this machine, the technician doing this had to ask a whole bunch of questions, as I was filling him in on all the details, he was sooo interested, he apologized because he said that my case was so interesting but he didn't want me to feel offended as it was about my health, I actually thanked him because he was taking the time to go over this.
Anyway, tonight I got a call from the doctor who analyzed the 24hour BP records, he is an Internist and a specialist on kidneys (I forget what the name of that is), he called me at home at 6pm and spoke with me for 40 minutes! He said that my case is quite 'unusual', that my blood pressure and heart rate do not follow a typical pattern which is what makes it hard for some 'younger' doctors to be able to treat, but that he was an older doctor and felt confident about how to treat me, when I heard this I felt like jumping! He said that he wants to give me low doses of Clonidine to block my sympathetic system which would lower my blood pressure and stabilize my heart rate.
During the 24 hour testing my highest bp was 167/126, my lowest was 126/75, my highest heart rate was 120 and the lowest 87. I told him that my heart rate upon slight exercise would go to 160 within a few minutes of warm up which is what I want to manage better so I can do more stuff. He said this medication should do that, I sure hope so!
He is faxing this information to my family doctor tomorrow and he said by Monday my Dr. should know if she wants to be the one treating me, he is going to add to his letter that if she wants, he can take me as his patient, I was so impressed by this offer.
He also said that because they have to do it so gradually that I won't notice changes very quickly, he said this is going to take weeks/months before I can start seeing a change, but the best way to do it is like that so that the changes won't make me more sick too.
Anyway I thought I would share my exciting news and hopefully I'll be on meds next week and we'll see how that goes!
Karin
Hi Laura!
I was referred to this nephrologist as he is the head of the Hypertension Clinic in our main hospital here where I live.
He ran a 24hr blood pressure and heart rate test and found that I have a 'complex issue' I'm hypertensive with any movement yet I have a greater than normal dip in blood pressure at night time which is why I get so dizzy while I sleep.
What he told me that I have along with the high blood pressure and POTS is a significat sympathetic abnormality and abnormal sodium handling through my renal nerves, how I don't know! I guess I should've asked, but when he explained it to me it made sense that - that is the reason my blood pressure goes up instead of lower as it is with most pots patients.
He was the one that put me on the Clonidine (thru my family doctor), he started me on a very low dosage, 0.5mg once a day for 4 days, then 0.5mg twice a day, and now I'm on 0.5mg 3 times a day - this will be my 2nd day with the 1.5mg daily, I'm to work up my way to 8mg daily unless I feel better on a lower dosage.
So far what I have noticed is that there are times during the day that my head just feels so clear, it is hard to explain, but to not have that brain fog it is an amazing feeling, during those times my energy levels are great, my blood pressure and heart rate still go high upon any movement but are not going as high as before. I feel that I have more patience with my kids. I am sleeping better, I would wake up every 2 hours or so, and now I can sleep for 6 hours in a row.
The first .5mg I took it at bed time as it did make me very sleepy which is why I think I'm sleeping better, but taking it during the day I get drowsy for the first two day of a new dosage and after that I'm ok.
It did give me very dry mouth so I'm drinking more water too, not sure if the water or the Clonidine is helping me not be as dizzy.
The specialist had said that if this Clonidine was not too work completely once I got to the 8mg daily then he would put me on a low dosage of a beta blocker called Labetatol, but I'm not there yet.
Have you started the Clonidine yet Laura? let me know if you have, what dosage and how it makes you feel. I sure hope this is the answer for us!
Take care,
Karin
I was referred to this nephrologist as he is the head of the Hypertension Clinic in our main hospital here where I live.
He ran a 24hr blood pressure and heart rate test and found that I have a 'complex issue' I'm hypertensive with any movement yet I have a greater than normal dip in blood pressure at night time which is why I get so dizzy while I sleep.
What he told me that I have along with the high blood pressure and POTS is a significat sympathetic abnormality and abnormal sodium handling through my renal nerves, how I don't know! I guess I should've asked, but when he explained it to me it made sense that - that is the reason my blood pressure goes up instead of lower as it is with most pots patients.
He was the one that put me on the Clonidine (thru my family doctor), he started me on a very low dosage, 0.5mg once a day for 4 days, then 0.5mg twice a day, and now I'm on 0.5mg 3 times a day - this will be my 2nd day with the 1.5mg daily, I'm to work up my way to 8mg daily unless I feel better on a lower dosage.
So far what I have noticed is that there are times during the day that my head just feels so clear, it is hard to explain, but to not have that brain fog it is an amazing feeling, during those times my energy levels are great, my blood pressure and heart rate still go high upon any movement but are not going as high as before. I feel that I have more patience with my kids. I am sleeping better, I would wake up every 2 hours or so, and now I can sleep for 6 hours in a row.
The first .5mg I took it at bed time as it did make me very sleepy which is why I think I'm sleeping better, but taking it during the day I get drowsy for the first two day of a new dosage and after that I'm ok.
It did give me very dry mouth so I'm drinking more water too, not sure if the water or the Clonidine is helping me not be as dizzy.
The specialist had said that if this Clonidine was not too work completely once I got to the 8mg daily then he would put me on a low dosage of a beta blocker called Labetatol, but I'm not there yet.
Have you started the Clonidine yet Laura? let me know if you have, what dosage and how it makes you feel. I sure hope this is the answer for us!
Take care,
Karin
You mentioned being referred to a nephrologist. Were you having kidney problems associated with POTS? How are the kidneys affected in POTS?
Also, I am starting Clonidine and hoping it will help me. Glad you are doing better!
Thanks,
Laura
Also, I am starting Clonidine and hoping it will help me. Glad you are doing better!
Thanks,
Laura
Hi Linda, sorry to hear you are not feeling great and not knowing what's causing all your symptoms.
I cannot tell you what you have as I'm not a doctor, I can tell you that your symptoms are similar to mine and other people in this forum that have confirmed it is POTS.
What testing have you had? I know I had so much testing done in the last year and a half and it all was normal, it was not until my cardiologist refered me to a cardiologist that specialices in POTS that I was diagnosed, and not until I was referred to a Nephrologist (kidney specialist) that treatment was prescribed, this was just a few weeks ago.
I know that it is very frustrating, keep insisting to your doctors if you are still not well, contact other doctors and see if there are any especialists in your area you can get an appointment with.
What I found out recently that the dizziness that would wake me up during the night was because my blood pressure would go way too low while I was sleeping, since I started medication I have been sleeping much better.
Wishing you all the best and hoping that you will soon find that one doctor that will make all the difference.
Karin
I cannot tell you what you have as I'm not a doctor, I can tell you that your symptoms are similar to mine and other people in this forum that have confirmed it is POTS.
What testing have you had? I know I had so much testing done in the last year and a half and it all was normal, it was not until my cardiologist refered me to a cardiologist that specialices in POTS that I was diagnosed, and not until I was referred to a Nephrologist (kidney specialist) that treatment was prescribed, this was just a few weeks ago.
I know that it is very frustrating, keep insisting to your doctors if you are still not well, contact other doctors and see if there are any especialists in your area you can get an appointment with.
What I found out recently that the dizziness that would wake me up during the night was because my blood pressure would go way too low while I was sleeping, since I started medication I have been sleeping much better.
Wishing you all the best and hoping that you will soon find that one doctor that will make all the difference.
Karin
Hello to both of you. I'm new on here. Let me run my symptoms by you. I still don't know if what I am experiencing is really dysautonomia. Dizziness, especially before I get out of bed, even moving my head around. Standing in one spot too long. I get reflux or GERD a lot, especially after eating carbs or eggs, and a few other things. I normally have a low blood pressure and pulse in the 60's. When I go into one of my arrythmia attacks, my pulse goes way up , my systolic goes up maybe 10-20 pts but my diasystolic goes up to within 20-30 pts of my systolic. I then first get weak, very short of breath and somewhat panicky. It sometimesfeels as though something in my stomach is pulsating and a lot of time after I eat, this sounds gross, but I can't burp. Sometimes I have difficulty swallowing my food, like there not enough room in my throat. I've read that the vagus nerve plays a part in heart palpitations, swallowing issues, and digestive problems. Can either of you shed some light on this or offer me any suggestions? I'm just about at my witts end. Thanks for listening. Linda
Yeah my symptoms are the same. I also have episodes of severe weakness, what I call 'funny turns', blood sugar drops, palpatations, headaches and prob a few more. They to differ daily!!! I am interested to see how you get on with the clonodine. Fingers crossed x
Thank you Halbashes, I will definitely let all of you know how this medication works out.
evo123, no I was not tested for the hyperadrenergic form of pots, but I sure fit the bill! My symptoms which I may have all or a combination of them depending on the day are: fatigue, fast heart rate upon little exertion, high blood pressure, chest pressure, chest pains, dizziness, headaches, brain fog, poor concentration, body aches (mostly my legs), weight gain, exercise intolerance, some gastro problems, heat intolerance, sometimes hard to keep warm, not sure if I missed any others, if I did I guess they don't happen as often to register or is it the brain fog that is making it that I don't remember?!
Anyway, yes I'm happy that someone actually wants to now treat it, we'll see how it goes!
Karin
evo123, no I was not tested for the hyperadrenergic form of pots, but I sure fit the bill! My symptoms which I may have all or a combination of them depending on the day are: fatigue, fast heart rate upon little exertion, high blood pressure, chest pressure, chest pains, dizziness, headaches, brain fog, poor concentration, body aches (mostly my legs), weight gain, exercise intolerance, some gastro problems, heat intolerance, sometimes hard to keep warm, not sure if I missed any others, if I did I guess they don't happen as often to register or is it the brain fog that is making it that I don't remember?!
Anyway, yes I'm happy that someone actually wants to now treat it, we'll see how it goes!
Karin
Congratulations on finding a specialist that is able to treat you! I hope the Clonidine is helpful! Please let us know how it works out!
I am sooo glad to hear that you have found a doctor who wants to actively help you xx
I have heard of a few people taking clonidine now, either in tablet or patch form, and have heard good comments so I really hope this helps. Have you been tested for the hyperadrenergic form of POTS (I can't remember if I have read this) - i think we all have so much to take in with this condition!!! What are your main symptoms?
My bp and hr monitoring gave me the same results only my highest bp was in the region of 200 systolic. My doctors just wrote a comment on the results summery as 'no significant drop!!!' They have shown no concern over this. During my treadmill exercise test my by went up to around 170 systolic. This was also not commented on. I have been told there is a deficit but no action has been suggested.
Keep us posted on your progress with this x
I have heard of a few people taking clonidine now, either in tablet or patch form, and have heard good comments so I really hope this helps. Have you been tested for the hyperadrenergic form of POTS (I can't remember if I have read this) - i think we all have so much to take in with this condition!!! What are your main symptoms?
My bp and hr monitoring gave me the same results only my highest bp was in the region of 200 systolic. My doctors just wrote a comment on the results summery as 'no significant drop!!!' They have shown no concern over this. During my treadmill exercise test my by went up to around 170 systolic. This was also not commented on. I have been told there is a deficit but no action has been suggested.
Keep us posted on your progress with this x
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