Aa
Was on another forum and saw this illness
Hi, I was on the "undiagnosed" forum, and saw this dystautonomia illness, and I seem to have a lot of the symptoms, but I'm not sure. About two years ago, I gained 85 lbs. in a matter of less than a year. My work was extremely physical, and I never changed eating habits or anything, this has happened to me twice before in my life, and they didn't know what it was then, either.
Now, I'm getting all sorts of problems, and they don't know anything! I have had to go to emergency rooms twice before (within last 2 years) because of rapid heart rate, and I was throwing PVC's? They said there was "nothing" wrong with my heart, and put me on a blood pressure medicine to help stop these attacks.
Because of the weight, I think, I am now a borderline diabetic, my blood pressure is slightly elevated, I still have rapid pulse, palpitations, depression which NO medication can touch, including three series of shock treatment, so I don't think it's "true" depression, I think it's caused by whatever I have. I'm exhausted!!! I have brain fog, now I'm getting spider veins all over my legs, started with gastro problems, and I just went to see the cardiologist today, and my pulse was 155 and blood pressure was 175/91, and he said I was probably "stressed." Never even listened to me before about the run-away heart rate, because I know I told him. One time I was there and my blood pressure went so high they wanted me to get to a hospital, and no one knew why!!! Now, I get flushed all the time, and am completely intolerent of any heat.
Also, today the cardiologist said that my heart is "stiffer" than other people's. I asked what the heck THAT meant, and he said that it was "stiffer" and that it didn't stay in the "relaxed" mode long enough, but "not to worry" because it just causes water gain. So, now I'm on a diuretic, and I DO have swelling of my ankles and can't breathe well when I walk.
I have hypothyroidism, which just started around the same time, and I've been to every kind of doctor imagineable, but no one knows what is wrong with me. I am starting to feel like a hypochondriac, and I think they are starting to think that way, too.
I was in good health until all this started, except I have stage 1 Hep C, which hasn't done anything in 20 years. I have never been overweight, and never had any heart related or blood pressure related problems before all this.
I am 57 years old and USED to be extremely active, now I can barely walk because I am not used to carrying this weight. They do the same tests over and over and over, cortisol test, thyroid tests, TSH3 and 4, blah, blah, blah.
Is any of this the illness dystautonomia (hope I'm spelling this right)?
Please help, I can't stand much more. I'm totally disabled now because of all these illnessess. Also, what kind of doctor do I need to see? I looked on the dystautonomia site, and there isn't a doctor in this ENTIRE state that specializes in anything like this, state is Colorado. I've been to a two cardiologists, three endocrinologists, family doctor (who is clueless), gastroenterologist, you name it, I've been there!!
Please help.
Now, I'm getting all sorts of problems, and they don't know anything! I have had to go to emergency rooms twice before (within last 2 years) because of rapid heart rate, and I was throwing PVC's? They said there was "nothing" wrong with my heart, and put me on a blood pressure medicine to help stop these attacks.
Because of the weight, I think, I am now a borderline diabetic, my blood pressure is slightly elevated, I still have rapid pulse, palpitations, depression which NO medication can touch, including three series of shock treatment, so I don't think it's "true" depression, I think it's caused by whatever I have. I'm exhausted!!! I have brain fog, now I'm getting spider veins all over my legs, started with gastro problems, and I just went to see the cardiologist today, and my pulse was 155 and blood pressure was 175/91, and he said I was probably "stressed." Never even listened to me before about the run-away heart rate, because I know I told him. One time I was there and my blood pressure went so high they wanted me to get to a hospital, and no one knew why!!! Now, I get flushed all the time, and am completely intolerent of any heat.
Also, today the cardiologist said that my heart is "stiffer" than other people's. I asked what the heck THAT meant, and he said that it was "stiffer" and that it didn't stay in the "relaxed" mode long enough, but "not to worry" because it just causes water gain. So, now I'm on a diuretic, and I DO have swelling of my ankles and can't breathe well when I walk.
I have hypothyroidism, which just started around the same time, and I've been to every kind of doctor imagineable, but no one knows what is wrong with me. I am starting to feel like a hypochondriac, and I think they are starting to think that way, too.
I was in good health until all this started, except I have stage 1 Hep C, which hasn't done anything in 20 years. I have never been overweight, and never had any heart related or blood pressure related problems before all this.
I am 57 years old and USED to be extremely active, now I can barely walk because I am not used to carrying this weight. They do the same tests over and over and over, cortisol test, thyroid tests, TSH3 and 4, blah, blah, blah.
Is any of this the illness dystautonomia (hope I'm spelling this right)?
Please help, I can't stand much more. I'm totally disabled now because of all these illnessess. Also, what kind of doctor do I need to see? I looked on the dystautonomia site, and there isn't a doctor in this ENTIRE state that specializes in anything like this, state is Colorado. I've been to a two cardiologists, three endocrinologists, family doctor (who is clueless), gastroenterologist, you name it, I've been there!!
Please help.
Some of the symptoms sound like they could possibly be dysautonomia, but these are nonspecific symptoms that could also be the symptoms of any number of other things, and you have quite a bit beyond autonomic symptoms going on such as your thyroid disorder, hepatitis, and your "stiff heart."
Before I address anything else, I want to talk about your doctor's discussion regarding your heart being stiffer than other people's. This may be a matter of degree of severity in terms of why he is telling you not to worry, as in perhaps in your case the stiffness is not yet very severe?? Let me preface this with the disclaimer: I am not a doctor and I am only attempting to explain this as I understand it as a fellow patient. Take this with a hefty grain of salt. That being said ...
I'm going to pull here from Stoelting, Robert K. & Ronald D. Miller. Basics of Anesthesia. Philadelphia: Churchill Livingstone, 2007. pp. 49-50.
Okay, so you have what is known as your pulse pressure, which is your Systolic Blood Pressure--the top number--minus your Diastolic Blood Pressure--the bottom number. "The pulse pressure is created by the addition of stroke volume"--the volume of blood pumped from one ventricle of the heart with each beat--"on top of a [diastolic blood pressure] within the compliant vascular tree." Therein lies the rub--"compliant." It goes on to point out that if there is "poor aortic compliance" (in other words, stiffness), increased pulse pressure can occur.
So returning to your case in particular, looking at the one specific example of blood pressure you give above: 175/91. We get a pulse pressure of 175-91 or 84. A normal resting seated pulse pressure for a healthy adult is somewhere around 40. A pulse pressure as high as 84 could be normal and reflective of high stroke volume if you were exercising at the time, but if you're resting, it's likely a reflection of poor compliance or "stiffness" as your doctor put it.
Now here's where I don my "I'm not a doctor" hat. Everything I can find anywhere online is saying that this is associated with cardiovascular complications and congestive heart failure. Maybe your pulse pressure isn't ordinarily that high. Maybe your particular situation isn't very advanced. Maybe I'm reading this all wrong. But if I were you I would get back with this cardiologist (or get a second opinion) immediately to get to the bottom of this; there's no reason a doctor should be so vague about something as serious as the condition of your heart.
Moving on, you may already have the feeling you've hit the end of your rope with endocrinologists. You definitely need to keep up with one for your thyroid issues (and if you haven't found one you're happy with, move on and try a fourth--you wouldn't be the first person to have to go through doctor after doctor until you settled on one with whom you clicked). But you may have to branch out to get assessed for other possible problems. Do you have a good general practitioner that is heading up your case? Has he/she suggested referrals to other specialties or considered other tests? If you're hitting a wall on that front, *that* may be the source of your problem. A good GP should have a "plan B" and a "plan C," etc. when you come back from one specialist or another without answers. Someone suggested autoimmune; if basic autoimmune markers haven't been tested yet, those are easy blood tests that definitely should be run to screen for that angle.
As for dysautonomia-specific testing, you have done the cardiologist route, so maybe you already have some test results that would give us more insight. Have you had a holter monitor? Echocardiogram? Stress echo? Any other cardiology testing (EP study, etc.)? Do you have specific results from any of these tests (the more specific the better)? If there are indications that point to dysautonomia, a tilt table test could be requested, but I think it's unlikely you'll get this until they see some indication from either a holter or ambulatory blood pressure monitoring that the tilt is indicated, unless you have syncope (which you haven't mentioned).
Here is more information on diagnosing dysautonomia:
http://www.medhelp.org/health_pages/Neurological-Disorders/Diagnosing-Dysautonomia/show/827?cid=196
On finding dysautonomia specialists (though generally one would seek them out after there's a little more evidence established as I said through holter monitoring or other tests from local docs):
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
Are the doctors you're seeing at a major teaching hospital/what hospital system are you using? Are you willing to travel to access a higher-ranked hospital system, and if so, how far are you willing/able to travel?
Sorry to ask so many questions, and sorry this is such a long post. I really hope you don't feel bombarded, I'm just trying to cover all the bases here. Feel free to respond in bits and pieces. In the meantime, if you're looking for more reading material on dysautonomia or the various forms thereof, we keep a brief reading list here:
http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196
I hope I've addressed most of what you've asked. Feel free to ask more and I'll try to keep up. Bear with me. Thanks.
Before I address anything else, I want to talk about your doctor's discussion regarding your heart being stiffer than other people's. This may be a matter of degree of severity in terms of why he is telling you not to worry, as in perhaps in your case the stiffness is not yet very severe?? Let me preface this with the disclaimer: I am not a doctor and I am only attempting to explain this as I understand it as a fellow patient. Take this with a hefty grain of salt. That being said ...
I'm going to pull here from Stoelting, Robert K. & Ronald D. Miller. Basics of Anesthesia. Philadelphia: Churchill Livingstone, 2007. pp. 49-50.
Okay, so you have what is known as your pulse pressure, which is your Systolic Blood Pressure--the top number--minus your Diastolic Blood Pressure--the bottom number. "The pulse pressure is created by the addition of stroke volume"--the volume of blood pumped from one ventricle of the heart with each beat--"on top of a [diastolic blood pressure] within the compliant vascular tree." Therein lies the rub--"compliant." It goes on to point out that if there is "poor aortic compliance" (in other words, stiffness), increased pulse pressure can occur.
So returning to your case in particular, looking at the one specific example of blood pressure you give above: 175/91. We get a pulse pressure of 175-91 or 84. A normal resting seated pulse pressure for a healthy adult is somewhere around 40. A pulse pressure as high as 84 could be normal and reflective of high stroke volume if you were exercising at the time, but if you're resting, it's likely a reflection of poor compliance or "stiffness" as your doctor put it.
Now here's where I don my "I'm not a doctor" hat. Everything I can find anywhere online is saying that this is associated with cardiovascular complications and congestive heart failure. Maybe your pulse pressure isn't ordinarily that high. Maybe your particular situation isn't very advanced. Maybe I'm reading this all wrong. But if I were you I would get back with this cardiologist (or get a second opinion) immediately to get to the bottom of this; there's no reason a doctor should be so vague about something as serious as the condition of your heart.
Moving on, you may already have the feeling you've hit the end of your rope with endocrinologists. You definitely need to keep up with one for your thyroid issues (and if you haven't found one you're happy with, move on and try a fourth--you wouldn't be the first person to have to go through doctor after doctor until you settled on one with whom you clicked). But you may have to branch out to get assessed for other possible problems. Do you have a good general practitioner that is heading up your case? Has he/she suggested referrals to other specialties or considered other tests? If you're hitting a wall on that front, *that* may be the source of your problem. A good GP should have a "plan B" and a "plan C," etc. when you come back from one specialist or another without answers. Someone suggested autoimmune; if basic autoimmune markers haven't been tested yet, those are easy blood tests that definitely should be run to screen for that angle.
As for dysautonomia-specific testing, you have done the cardiologist route, so maybe you already have some test results that would give us more insight. Have you had a holter monitor? Echocardiogram? Stress echo? Any other cardiology testing (EP study, etc.)? Do you have specific results from any of these tests (the more specific the better)? If there are indications that point to dysautonomia, a tilt table test could be requested, but I think it's unlikely you'll get this until they see some indication from either a holter or ambulatory blood pressure monitoring that the tilt is indicated, unless you have syncope (which you haven't mentioned).
Here is more information on diagnosing dysautonomia:
http://www.medhelp.org/health_pages/Neurological-Disorders/Diagnosing-Dysautonomia/show/827?cid=196
On finding dysautonomia specialists (though generally one would seek them out after there's a little more evidence established as I said through holter monitoring or other tests from local docs):
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
Are the doctors you're seeing at a major teaching hospital/what hospital system are you using? Are you willing to travel to access a higher-ranked hospital system, and if so, how far are you willing/able to travel?
Sorry to ask so many questions, and sorry this is such a long post. I really hope you don't feel bombarded, I'm just trying to cover all the bases here. Feel free to respond in bits and pieces. In the meantime, if you're looking for more reading material on dysautonomia or the various forms thereof, we keep a brief reading list here:
http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196
I hope I've addressed most of what you've asked. Feel free to ask more and I'll try to keep up. Bear with me. Thanks.
Hi everyone, yes, I'm taking thyroid meds, but they keep having to adjust them. One thing I forgot to mention is that about a month ago, they had to use a scope and go into my stomach, and "open" my esophogus, because it was too small, and they told me I have paralyzed stomach muscles, and a stricture at the opening of my stomach, and they put me on this medicine called Motilium, which helps the stomach muscles to work because I had undigested food buildup, so now I have THAT to contend with also.
They have NOT checked for autoimmune attack, all they've ever done is check thyroid levels, cortisol levels, TSH3-4, and tell me, gee, we know SOMETHING is wrong, but we don't know what!! I originally went for the weight gain, and personally, I don't know what kind of doctor to go to, as I've been to 3 endocrinologists, and they don't seem to know anything, and they all take the same tests the other ones took over and over and over.
They have NOT checked for autoimmune attack, all they've ever done is check thyroid levels, cortisol levels, TSH3-4, and tell me, gee, we know SOMETHING is wrong, but we don't know what!! I originally went for the weight gain, and personally, I don't know what kind of doctor to go to, as I've been to 3 endocrinologists, and they don't seem to know anything, and they all take the same tests the other ones took over and over and over.
Some of the symptoms sound like autonomic problems but it is hard to tell overall. You mention having hypothyroid... have they replaced those hormones and gotten them in good margin? I have heard from some who have that condition that it is very important to get things dialed in... and it takes several rounds of measurement to do so.
If that started at the same time as everything else, then it can be suspect itself (throwing other things out of whack) particularly with an unbeatable depression... but if other things go wrong too then perhaps an infection or autoimmune thing could be behind it. I believe that is one of the more common ways the thyroid gets hurt... via autoimmune attack. Such a condition could well cause other disruptions progressively... including autonomic problems. Is this something that doctors have investigated?
If that started at the same time as everything else, then it can be suspect itself (throwing other things out of whack) particularly with an unbeatable depression... but if other things go wrong too then perhaps an infection or autoimmune thing could be behind it. I believe that is one of the more common ways the thyroid gets hurt... via autoimmune attack. Such a condition could well cause other disruptions progressively... including autonomic problems. Is this something that doctors have investigated?
Bumping you up. Sorry, I didn't even see your post. A lot has been going on lately. I'm having a sleep apnea test tonight, been to my GP, and my Coardiologist in the last couple of days.
I live in Nevada, so I really don't know anything about the doctors, but here are a couple of sites with more Dysautonomia information.
Dysautonomia Treatments:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=196
Dysautonomia and Autonomic Dysfunction Index:
http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction--Dysautonomia-Index-Page/show/857?cid=196
Halbashes, could you post the site for Dysautonomia doctors? I'm sorry, I couldn't find it.
Kenneltach, I hope you feel better. Keep us posted!
Wen
I live in Nevada, so I really don't know anything about the doctors, but here are a couple of sites with more Dysautonomia information.
Dysautonomia Treatments:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=196
Dysautonomia and Autonomic Dysfunction Index:
http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction--Dysautonomia-Index-Page/show/857?cid=196
Halbashes, could you post the site for Dysautonomia doctors? I'm sorry, I couldn't find it.
Kenneltach, I hope you feel better. Keep us posted!
Wen
Have an Answer?
You are reading content posted in the Autonomic Dysfunction Community
Are there grounds to recommend coffee consumption? Recent studies perk interest.
Salt in food can hurt your heart.
Get answers to your top questions about this common — but scary — symptom
How to know when chest pain may be a sign of something else
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
