Aa
Im begging someone to help me with this!
I really need help with this i am going out of my mind! ANY suggestions or help would be so welcome!
About 2 years ago now i started feeling like my breathing wasnt right. it felt too shallow like i couldnt take in enough air. Then i started getting very bad headakes every single day and dizziness all day every day too the point i couldnt do anything normal anymore because i was too scared. I went to my doctor and he was baffled and basically just wrote it off. Its been two years now and my health has got continuously worse. every day i experience these symptoms now..
Heart palpitations
'fluttering' in my chest.
Rapid heart beat whenever i move in the slightest.
Dizziness all day every day
Head pain
Pressure in my head like its filled up with something and about to explode
Pains/tingling & numbness in both legs and arms(it varies) And face.
Chest pain
Very out of breath even when just sitting still
And the most recent symtpoms are my ears feeling all blocked and a kind of wave of numbness + tingling (very bad feeling) feeling like its washing through my brain which makes me feel like i cant breath or think at all while it happens (normally lasts about 3-4 seconds) It kind of feels like my brain just cuts out.
I am nearly 18 years old, female, not preganant, a bit underweight.
I have had ALOT of blood tests, thyroid is normal, blood cells are normal, Bp normal, An echocardiogram came back fine, Wore a 7 day ecg monitor which showed my palpitations but the cardiologist said it was ok?? Had a brain MRI scan from the neurologist which he said was 'essentialy normal' Im being sent to a breathing clinic next month but other than this no one seems to know whats going on or how to help. im not sure they even want to!!
Sorry for such a long Question please any help would be SO appreciated!
Dawn
About 2 years ago now i started feeling like my breathing wasnt right. it felt too shallow like i couldnt take in enough air. Then i started getting very bad headakes every single day and dizziness all day every day too the point i couldnt do anything normal anymore because i was too scared. I went to my doctor and he was baffled and basically just wrote it off. Its been two years now and my health has got continuously worse. every day i experience these symptoms now..
Heart palpitations
'fluttering' in my chest.
Rapid heart beat whenever i move in the slightest.
Dizziness all day every day
Head pain
Pressure in my head like its filled up with something and about to explode
Pains/tingling & numbness in both legs and arms(it varies) And face.
Chest pain
Very out of breath even when just sitting still
And the most recent symtpoms are my ears feeling all blocked and a kind of wave of numbness + tingling (very bad feeling) feeling like its washing through my brain which makes me feel like i cant breath or think at all while it happens (normally lasts about 3-4 seconds) It kind of feels like my brain just cuts out.
I am nearly 18 years old, female, not preganant, a bit underweight.
I have had ALOT of blood tests, thyroid is normal, blood cells are normal, Bp normal, An echocardiogram came back fine, Wore a 7 day ecg monitor which showed my palpitations but the cardiologist said it was ok?? Had a brain MRI scan from the neurologist which he said was 'essentialy normal' Im being sent to a breathing clinic next month but other than this no one seems to know whats going on or how to help. im not sure they even want to!!
Sorry for such a long Question please any help would be SO appreciated!
Dawn
ive heard quite alot about tilt tests, what type of specialist/doctor would do this?
I spoke to me doctor today and told him all about it and how exact it was to the symptoms ive been feeling and his answer was 'this is something a neurologist deals with so i think he would of found anything like this especially because your mri results where so good' and that was that.
Im very angry that hes just written it off so easily without even considering it so im not trying to find out if theres any other kind of doctors i could go through about this to maybe have a more firm diagnosis because i want to be SURE its not t hat before my gp wirtes it off.
I am going to look at the website and continue with this, in 2 years ive never found anything so possible that it could be to make me feel this way and im so thankful that you mentioned this to me.
If you have any information at all that you think could help me with this and trying to get tested somehow id be really greatfull.
Thanks so much again, Dawn
I spoke to me doctor today and told him all about it and how exact it was to the symptoms ive been feeling and his answer was 'this is something a neurologist deals with so i think he would of found anything like this especially because your mri results where so good' and that was that.
Im very angry that hes just written it off so easily without even considering it so im not trying to find out if theres any other kind of doctors i could go through about this to maybe have a more firm diagnosis because i want to be SURE its not t hat before my gp wirtes it off.
I am going to look at the website and continue with this, in 2 years ive never found anything so possible that it could be to make me feel this way and im so thankful that you mentioned this to me.
If you have any information at all that you think could help me with this and trying to get tested somehow id be really greatfull.
Thanks so much again, Dawn
An electrophysiologist cardiologist, not a neurologist, is who would conduct a tilt table test. You might conduct your own experiment at home. Lay down flat for 20 minutes, take your pulse at your wrist. Stand up. After three minutes, take your pulse again. If you have an automatic blood pressure cuff, use it for your blood pressure after the 20 minutes of lying down and after the three minutes of standing as well. Omron makes one that's considered pretty reliable (blood pressure cuff). Please, let me know the numbers.
I initially was diagnosed with inappropriate sinus tachycardia before I had the tilt table test. Inappropriate sinus tachycardia can happen even while at rest.
Did the 7 day holter monitor show sinus tachycardia, supraventicular tachycardia, or ? Was the GP even willing to test plasma free metanephrines and catecholamines? What about your T3? If your blood pressure tends to run low, it might be that your norepinephrine will be high from trying to maintain your blood pressure to keep you from fainting.
It might help with your doctor to take in the articles written by reputable sources online. Underline the symptoms you have and the type of testing that you want done. Mayo clinic talks about tilt table testing, for instance. I don't know if they are known where you live. Vanderbilt University in Tennessee, USA is doing research and there are articles posted on ndrf website.
I initially was diagnosed with inappropriate sinus tachycardia before I had the tilt table test. Inappropriate sinus tachycardia can happen even while at rest.
Did the 7 day holter monitor show sinus tachycardia, supraventicular tachycardia, or ? Was the GP even willing to test plasma free metanephrines and catecholamines? What about your T3? If your blood pressure tends to run low, it might be that your norepinephrine will be high from trying to maintain your blood pressure to keep you from fainting.
It might help with your doctor to take in the articles written by reputable sources online. Underline the symptoms you have and the type of testing that you want done. Mayo clinic talks about tilt table testing, for instance. I don't know if they are known where you live. Vanderbilt University in Tennessee, USA is doing research and there are articles posted on ndrf website.
I'm sorry about the typo of your name last post.
In your many blood tests, have they specifically tested your blood iron level, total iron binding capacity (TIBC), and ferritin levels? My tachycardia in the past was aggravated by iron deficiency, even when my CBC was normal. I was having chest pains too. After an abnormal nuclear test, I was in the ER for tachycardia and chest pain. They did an angiogram, which came back normal. Sometime afterward, my internal medicine dr. at the time thought to measure iron, not just CBC. Found out I was anemic. He told of a link between iron deficiency and tachycardia.
Nowadays, I'm not anemic, and I still have the orthostatic tachycardia, but the pulse doesn't tend to get quite as high as it did when I was anemic.
A recent holter monitor for 48 hours showed the highest heart rate being in the 150s. This was when I got up after sleeping a while.
In your many blood tests, have they specifically tested your blood iron level, total iron binding capacity (TIBC), and ferritin levels? My tachycardia in the past was aggravated by iron deficiency, even when my CBC was normal. I was having chest pains too. After an abnormal nuclear test, I was in the ER for tachycardia and chest pain. They did an angiogram, which came back normal. Sometime afterward, my internal medicine dr. at the time thought to measure iron, not just CBC. Found out I was anemic. He told of a link between iron deficiency and tachycardia.
Nowadays, I'm not anemic, and I still have the orthostatic tachycardia, but the pulse doesn't tend to get quite as high as it did when I was anemic.
A recent holter monitor for 48 hours showed the highest heart rate being in the 150s. This was when I got up after sleeping a while.
hi thanks for the replys, I dont have a blood pressure cuff but i couldnt definately look into getting one.
As for the day holter monitor they showed me a brief glimpse of my results told me they was 'fine' and that was it. They never went into details or took notice of me when i pointed out my palpitation ON the graph which could be clearly seen.
I did find as much information as possible on the subjects online from various websites and take it to my doctor, and i guess this answers your other question too. he was not willing to test anything basically. He just said the neurologist would have found anything like this and that because my mri scan was fine he highly doubted it..and that was it.
To be honest with you its only recently ive started to take control and tell the doctors that i want to KNOW what there testing me for before that they always seems hesitant to tell me so im not one hundred percent sure if ive pecifically had my blood iron tested, ive been told numouros times that im not anemic so maybe they have maybe they havent.
I get alot of chest pains aswell but i feel all of my symptoms even when im sitting resting not just when i stand up or move so would a tilt test even help?
Also im looking into changing doctors because if my doctor doesnt belive me i dont know how im ever going to get all of this diagnosed and find out what it is.
do you still get symptoms now? and what do you use to treat/help it?
Thanks, dawn
As for the day holter monitor they showed me a brief glimpse of my results told me they was 'fine' and that was it. They never went into details or took notice of me when i pointed out my palpitation ON the graph which could be clearly seen.
I did find as much information as possible on the subjects online from various websites and take it to my doctor, and i guess this answers your other question too. he was not willing to test anything basically. He just said the neurologist would have found anything like this and that because my mri scan was fine he highly doubted it..and that was it.
To be honest with you its only recently ive started to take control and tell the doctors that i want to KNOW what there testing me for before that they always seems hesitant to tell me so im not one hundred percent sure if ive pecifically had my blood iron tested, ive been told numouros times that im not anemic so maybe they have maybe they havent.
I get alot of chest pains aswell but i feel all of my symptoms even when im sitting resting not just when i stand up or move so would a tilt test even help?
Also im looking into changing doctors because if my doctor doesnt belive me i dont know how im ever going to get all of this diagnosed and find out what it is.
do you still get symptoms now? and what do you use to treat/help it?
Thanks, dawn
I would definitely look around for a better doctor who listens and cares about their patients and is not hesitant to be thorough in testing to try to diagnose you. I think a lot of doctors (from reading posts on a different forum) decide a person is not anemic just because the patient's hemoglobin and hematocrit and red blood cells are all in normal range. BUT, I'm living proof, that this is not always so. It is not at ALL uncommon for a menstruating female to have iron deficiency.
If they won't test you, it would be worth it to start taking one iron pill a day, which in the USA, you can get over the counter. 325 mg ferrous sulfate is what you would get. For best absorption, you would need to take it with at least 250 mg of vitamin C along with it... if vit. C bothers your stomach or gives you mouth sores, try ester-C. And you don't want to take calcium or eat antiacids to close to taking the iron w/the vitamin C. If you get constipated from the iron, just be sure and eat enough fiber, and take miralax or something if you need to. If you take it a few weeks and start to feel better and the tachycardia gets less, you can suspect that you were low in iron. It takes longer, though, to get your iron stores up with only taking one pill a day.
You could ask your current doctor for ALL your lab records, to take to a doctor for a second opinion and potentially, to make that second opinion doctor, if you are happier with the way they treat you, your new primary care physician. And I would call the cardiologist and ask them to release to you the hour by hour results of your holter monitor test, along with the final report. You might need to sign a medical record release form. Ask them to tell you what kind of tachycardia you were having. Since they said it was okay, it likely was the sinus tachycardia variety. In order to be defined as tachycardia, it has to be over 100 beats per minute.
If you don't have a problem where the tachycardia gets worse when you are in an upright position, than the tilt table is likely not for you. You might want to look more about innappropriate sinus tachycardia. Since your primary physician seems to think the neurologist would have looked into all of your concerns, including endocrinology related ones, maybe you could call your neurologist and ask them what, if any, blood tests they ran. (I would do this after you get the records from your current primary care physician and see all the tests they have copies of that were run and if you don't see T3, and other endocrine tests, especially catecholamines and plasma free metanephrines, blood iron and ferritin (iron stores) blood levels, ). I've been to neurologists for migraines, and frankly, I don't remember them ordering ANY blood tests at all.
If you had an adrenal tumor called a pheochromocytoma, you would not always have to have high blood pressure, because sometimes the tumor is silent and not putting out high levels of catecholamines.
You can still have an overactive thyroid and have a normal TSH level... for instance, if you had a "hot" nodule on your thyroid that was emitting higher than normal levels of thyroid hormones causing hyperthyroidism.
Have you had a 24 hour urine collection measuring your sodium output? This can be an indicator as to whether or not your hypovolemic.
About me, I still have problems with palpitations, which sometimes can rachet up headache pain. I get short of breath when walking faster than a leisurely gait. My iron is normal now, because, as my nickname suggests, I no longer have menstruation issues (I had severe endometriosis). If I've had hot water hitting me (I use a chair) and I reach up, I feel light headed and my vision can start to go. I don't pass out as some do from dysautonomia (other than the nitroglycerine induced faint on the tilt table test). If I eat a large meal, or sometimes, I think if I eat certain foods, my tachycardia acts up. My heart rate is up and down.... see next post for a sampling of my own holter monitor results from this year.
If they won't test you, it would be worth it to start taking one iron pill a day, which in the USA, you can get over the counter. 325 mg ferrous sulfate is what you would get. For best absorption, you would need to take it with at least 250 mg of vitamin C along with it... if vit. C bothers your stomach or gives you mouth sores, try ester-C. And you don't want to take calcium or eat antiacids to close to taking the iron w/the vitamin C. If you get constipated from the iron, just be sure and eat enough fiber, and take miralax or something if you need to. If you take it a few weeks and start to feel better and the tachycardia gets less, you can suspect that you were low in iron. It takes longer, though, to get your iron stores up with only taking one pill a day.
You could ask your current doctor for ALL your lab records, to take to a doctor for a second opinion and potentially, to make that second opinion doctor, if you are happier with the way they treat you, your new primary care physician. And I would call the cardiologist and ask them to release to you the hour by hour results of your holter monitor test, along with the final report. You might need to sign a medical record release form. Ask them to tell you what kind of tachycardia you were having. Since they said it was okay, it likely was the sinus tachycardia variety. In order to be defined as tachycardia, it has to be over 100 beats per minute.
If you don't have a problem where the tachycardia gets worse when you are in an upright position, than the tilt table is likely not for you. You might want to look more about innappropriate sinus tachycardia. Since your primary physician seems to think the neurologist would have looked into all of your concerns, including endocrinology related ones, maybe you could call your neurologist and ask them what, if any, blood tests they ran. (I would do this after you get the records from your current primary care physician and see all the tests they have copies of that were run and if you don't see T3, and other endocrine tests, especially catecholamines and plasma free metanephrines, blood iron and ferritin (iron stores) blood levels, ). I've been to neurologists for migraines, and frankly, I don't remember them ordering ANY blood tests at all.
If you had an adrenal tumor called a pheochromocytoma, you would not always have to have high blood pressure, because sometimes the tumor is silent and not putting out high levels of catecholamines.
You can still have an overactive thyroid and have a normal TSH level... for instance, if you had a "hot" nodule on your thyroid that was emitting higher than normal levels of thyroid hormones causing hyperthyroidism.
Have you had a 24 hour urine collection measuring your sodium output? This can be an indicator as to whether or not your hypovolemic.
About me, I still have problems with palpitations, which sometimes can rachet up headache pain. I get short of breath when walking faster than a leisurely gait. My iron is normal now, because, as my nickname suggests, I no longer have menstruation issues (I had severe endometriosis). If I've had hot water hitting me (I use a chair) and I reach up, I feel light headed and my vision can start to go. I don't pass out as some do from dysautonomia (other than the nitroglycerine induced faint on the tilt table test). If I eat a large meal, or sometimes, I think if I eat certain foods, my tachycardia acts up. My heart rate is up and down.... see next post for a sampling of my own holter monitor results from this year.
The cardiologist office pointed out that my average was good. The highest average I had was 100 beats per minute. I will give you a sampling of some of the hours of the minimum and maximum of the hour...
The hour minimum pulse maximum pulse
11 AM 68 125
12 PM 72 124
1 PM 71 118
7 PM 70 117
8 PM 67 118
9 PM 65 121
10 PM 56 117
sleeping 12 AM 60 91
1 AM 63 97
sleeping, got up to go to the bathroom with this next one
2 AM 60 148
sleeping, got up later in the morning with the next one
6 AM 62 133
Think I went back to bed, than got up a little later with the next one
7 AM 61 145
The biggest leap in beats per minute came the next morning when I got up from sleeping to go to the bathroom again
1 AM 60 152
The hour minimum pulse maximum pulse
11 AM 68 125
12 PM 72 124
1 PM 71 118
7 PM 70 117
8 PM 67 118
9 PM 65 121
10 PM 56 117
sleeping 12 AM 60 91
1 AM 63 97
sleeping, got up to go to the bathroom with this next one
2 AM 60 148
sleeping, got up later in the morning with the next one
6 AM 62 133
Think I went back to bed, than got up a little later with the next one
7 AM 61 145
The biggest leap in beats per minute came the next morning when I got up from sleeping to go to the bathroom again
1 AM 60 152
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