Help with s/s

[rossman]

Greetings to all.

This is my first post in your forum. I came here because of having s/s (signs and symptoms) that seem to involve dysautonomia and, I am wanting to get some feedback as to whether it sounds familiar to anyone. I need this support because of fruitless years spent attempting to Dx andTx this problem. I have spent many thousands of dollars, lost my standard of living, and basically have lost my health. I was an extremely high functioning person before this problem began about 8 years ago. Anyhow, this is what I deal with: I do not have tachycardia. I have bradycardia. My s/s are frequently (but not always) associated with my pulse dropping down below about 56. It goes as low as 46. It does this intermittently and without any apparent association to anything. Positon changes consistently set off the s/s, but not necesarily with a change in pulse rate (sometimes I can go from seting to standing and set off the s/s, yet the pulse and BP stay the same). I used to have orthostatic hypotension, but no longer do. My blood pressure stays fairly stable but low averaging around 110/60. It stays between 98/50 up to 140/90. I get brain fog, light headed, difficulty concentrating and slightly nauseas with position changes. I will get uncoordinated to the point of appearing mildly intoxicated. But, obviously it's not just a decrease in BP (and ergo, blood to the brain) that causes the s/s because the s/s will occur with and without BP and pulse changes. Sometimes (but not always) eating sets it off. The s/s are intermittment and disabling. Lying down helps sometimes. But when it's bad, lying down will do nothing. When the s/s are severe, it feels like my head is filled with lead. It can be bad enough to preclude my leaving the house.

I learned some time back that I have to be my own advocate and that I cannot just passively trust the medical communty to Dx and solve this problem without my leading the way. So, if anyone has any suggestions it would be appreciated. I am not asking for a Dx, just some advice as to whether this sounds like any form of dysautonomia any of you may be familiar with. Would truly appreciate hearing from any and all of you.

Thank you very much

Rossman

[mom4cem]

Hi Rossman,

Sorry to hear of your ordeal. It sounds like you have some form of dysautonomia. There are many types. Myself, I have just been given the umbrella term of dysautonomia. All in all I think treatments for each can be similar of course with some differences too.

Have you been under medical care for these symptoms? Received any type of information or reason for what you are going through?

Welcome to the group, I am sure you will find a wealth of information and support here.

[Mrs. Glass]

Welcome to our little part of the world. I wish that I had the magic answer to your questions, but I dont. I have only been going through this for a little over a year,and cant imagine what its going to be like in eight years. My suggestion to you is to seek out a Dr that specializes in Dysautonia problems. There is a link on this website that has a doctors list and where they are located. I live in the middle of nowhere, where there is not one dr here that specializes in this. So I am trying to get into Vanderbilt. I have only been partially diagnosed, but that doesnt stop the symptoms, or make my life any better. My doctors are in over their heads,and I have had test after test to find out exactly what is wrong with me, and the meds that they have me on so far either dont work at all or they work too well and I ended up having a minor stroke. So you see a lot of us are in the same position. I agree with you that we have to be our own advocates. When Im too weak to be mine, my family does it. If it gets too stressful, they take over. I am sick of doctors to tell you the truth. Some of them are just a waste of space. My cardiologist is a great doctor for the heart, but he is in over his head with me. More guessing than anything else. But I still go to see him, I guess because I am scared not to right now. Hope you find a doctor that will listen to you. Dont give up they are out there, we just have to keep searching. The internet is a great tool. Vanessa

Greetings to all.

This is my first post in your forum. I came here because of having s/s (signs and symptoms) that seem to involve dysautonomia and, I am wanting to get some feedback as to whether it sounds familiar to anyone. I need this support because of fruitless years spent attempting to Dx andTx this problem. I have spent many thousands of dollars, lost my standard of living, and basically have lost my health. I was an extremely high functioning person before this problem began about 8 years ago. Anyhow, this is what I deal with: I do not have tachycardia. I have bradycardia. My s/s are frequently (but not always) associated with my pulse dropping down below about 56. It goes as low as 46. It does this intermittently and without any apparent association to anything. Positon changes consistently set off the s/s, but not necesarily with a change in pulse rate (sometimes I can go from seting to standing and set off the s/s, yet the pulse and BP stay the same). I used to have orthostatic hypotension, but no longer do. My blood pressure stays fairly stable but low averaging around 110/60. It stays between 98/50 up to 140/90. I get brain fog, light headed, difficulty concentrating and slightly nauseas with position changes. I will get uncoordinated to the point of appearing mildly intoxicated. But, obviously it's not just a decrease in BP (and ergo, blood to the brain) that causes the s/s because the s/s will occur with and without BP and pulse changes. Sometimes (but not always) eating sets it off. The s/s are intermittment and disabling. Lying down helps sometimes. But when it's bad, lying down will do nothing. When the s/s are severe, it feels like my head is filled with lead. It can be bad enough to preclude my leaving the house.

I learned some time back that I have to be my own advocate and that I cannot just passively trust the medical communty to Dx and solve this problem without my leading the way. So, if anyone has any suggestions it would be appreciated. I am not asking for a Dx, just some advice as to whether this sounds like any form of dysautonomia any of you may be familiar with. Would truly appreciate hearing from any and all of you.

Thank you very much

Rossman

[rossman]

Hi Rossman,

Sorry to hear of your ordeal. It sounds like you have some form of dysautonomia. There are many types. Myself, I have just been given the umbrella term of dysautonomia. All in all I think treatments for each can be similar of course with some differences too.

Have you been under medical care for these symptoms? Received any type of information or reason for what you are going through?

Welcome to the group, I am sure you will find a wealth of information and support here.

Hi there MOM. Thanks for your reply.

I had been Dx with adrenal problems but they seem to have mostly resolved. I believe this because taking cortisol and DHEA now both do the same thing: Feel great for 2 days and then feel toxic like I don't need the stuff. I also believe this because I am very aware of what adrenal insufficiency feels like, and I don't feel it. Also have taken Florinef which did have a very mild effect on my BP. In fact, it may have stopped the orthostatic hypotension, but it did not stop the s/s. I still get the s/s with position changes without any BP changes. I am considering doing a hormone work-up again. It's been 5 years. I really don't feel like I need cortisol. So, yes I was being tx for adrenal problems with the doc believing that to be the cause of my problems. It wasn't. Or at least it wasn't the full picture. I think I need to look upstream more, like up to the HPA (hypothalmic-pituitary axis). My GP says there is no point in it because even if the deficiency is upstream, the tx will be the same=cortisol. I disagree. I also want to look at catacholimines. If the origin of my illness is adrenal, then it would make sense that it would be a catecholimine problem. Catecholimines control the sympathetic nervous system which is essential with vasomotor control. Vasomotor malfunction, seems to be the problem. It's either that or cardiac. I am starting to push even harder on some docs to get something done about this. I got this hard core about research and self Dx because I am not getting the help I need from doctors. So, I was diagnosed with adrenal fatigue/non adapted, 7-8 years ago. I have done everything known from acupunture, homeopathy and natural support to cortisol in attempts to rejuvinate my adrenals. It really doesn't seem to be the adrenals any longer. I am starting to see that I was inadequatly diagnosed. There is, and has been something else going on too. The s/s I am having now are the same as 7-8 years ago, except for the uncoordination, faintness and BP changes. Those are new.

I have seen several doctors attempting to get this problem diagnosed. I have been Dx and tx for several different things, and yet, I remain sick. But, no I haven't seen anyone for "dysautonomia". I have tracked this Dx down myself. I'm actually pretty mad about it because I believe it has gone this far as a result if inadequate Dx. Won't do me any good to be mad though. In fact, only make it worse. My illness was actually set off by overwhelming chronic stress and emotional trauma.

Anyhow, I do appreciate your response. I do need the support. I am running out of what it takes to deal with this. Been going on too long.

Thank you,

Rossman

[taylortotmom]

Hello and welcome. What type of physicians have you seen and what type of tests have been run?

Carmen

[yogini]

Rossman,

Welcome to the forum. There is a form of dysautonomia called NCS (neurocardiogenic syncope), in which I think the heart rate drops. The best way to get tested for this is a tilt table test. There is great information about the various forms of dysautonomia, the test and doctors who might be able to help you on the DINET main page.

When I first got diagnosed with POTS, my doctor advised me to have an endocrine work up because some endocrine conditions have an overlap of symptoms with POTS. So your problem may well be endocrine and not dysautonomia. Given your history, it might make sense to pursue both avenues.

Keep us posted.

-Rita

[gwen]

welcome to the board. I too am newer to it and have found it to be wealth of friendly voices who know more than the docs. I too was misdiagnosed with the adrenals last year and I would have bet the farm that was it but all the symptoms you mention I had too. Today as a matter of fact. I now have been diagnosed with NMH/POTS and although I hate having it It was a relief to find a diagnosis at least. I hope we can help you help yourself and can give you a few new trails to follow. I would check the Dr.s list to see if one is nearby. :-)

[rossman]

Rossman,

Welcome to the forum. There is a form of dysautonomia called NCS (neurocardiogenic syncope), in which I think the heart rate drops. The best way to get tested for this is a tilt table test. There is great information about the various forms of dysautonomia, the test and doctors who might be able to help you on the DINET main page.

When I first got diagnosed with POTS, my doctor advised me to have an endocrine work up because some endocrine conditions have an overlap of symptoms with POTS. So your problem may well be endocrine and not dysautonomia. Given your history, it might make sense to pursue both avenues.

Keep us posted.

-Rita

Thank You Rita,

Thanks to people like you, I am rapidly getting clear about priorities in dealing with this problem. I completely agree about ruling out the endocrine first. I have s/s that both confirm and deny this is endocrine. Your right about "overlap" of s/s. I don't seem to fit one thing perfectly; I fit everything about POTS, except for the tachycardia, etc. So, on with the tests. Whatever the true etiology, it is very clear, finally, that my s/s are due to cerebral ischemia. I am just baffled that so many doctors could not see this.

The other variable I am dealing with is HCV. Liver is in great shape, so it doesn't make any sense how this could have anything to do with dysautonomia. But, if anyone out there has experience with this please let me know.

Thank you,

Rossman

[rossman]

welcome to the board. I too am newer to it and have found it to be wealth of friendly voices who know more than the docs. I too was misdiagnosed with the adrenals last year and I would have bet the farm that was it but all the symptoms you mention I had too. Today as a matter of fact. I now have been diagnosed with NMH/POTS and although I hate having it It was a relief to find a diagnosis at least. I hope we can help you help yourself and can give you a few new trails to follow. I would check the Dr.s list to see if one is nearby. :-)

Hi Gracie,

Thanks for your reply. Actually, I did truly have adrenal insufficiency (mild). It's just very questionable as to whether or not it's still a problem. Maybe having an adrenal problem set off a dysautonomia. Won't know for sure without tests. I guess I want to believe it is adrenal because that's more treatable (I believe). But I hear you and completely agree about the relief of finally knowing what's really wrong. I do know that will bring some relief.

Did you have you catecholimine levels tested when you did the adrenal tests? Did you have my same s/s of getting great relief with cortisol, dhea, etc, but only for a few days?

What is NMH POTS, and what do you do for it? Have you found a way to minimize the s/s? Are there any promising tx on the horizon?

Thanks so much for your help.

Rossman

[rossman]

Welcome to our little part of the world. I wish that I had the magic answer to your questions, but I dont. I have only been going through this for a little over a year,and cant imagine what its going to be like in eight years. My suggestion to you is to seek out a Dr that specializes in Dysautonia problems. There is a link on this website that has a doctors list and where they are located. I live in the middle of nowhere, where there is not one dr here that specializes in this. So I am trying to get into Vanderbilt. I have only been partially diagnosed, but that doesnt stop the symptoms, or make my life any better. My doctors are in over their heads,and I have had test after test to find out exactly what is wrong with me, and the meds that they have me on so far either dont work at all or they work too well and I ended up having a minor stroke. So you see a lot of us are in the same position. I agree with you that we have to be our own advocates. When Im too weak to be mine, my family does it. If it gets too stressful, they take over. I am sick of doctors to tell you the truth. Some of them are just a waste of space. My cardiologist is a great doctor for the heart, but he is in over his head with me. More guessing than anything else. But I still go to see him, I guess because I am scared not to right now. Hope you find a doctor that will listen to you. Dont give up they are out there, we just have to keep searching. The internet is a great tool. Vanessa

Hi Vanessa,

Thanks so much for your reply and support. Personally, I believe it must be very good for your prognosis that your s/s are fairly new. You have a much better chance of reversing this, or at least putting it into remission, catching it early. I believe I got this bad because of going on so long without an adequate diagnosis. In other words, this could have been corrected if properly dx 7 years ago. My God, now realizing what is really wrong, I am amazed that I didn't die or stroke out, or something. I was so bad that 80% of the last 2 years was spent in bed. I am currently much better than that. I am an RN and really want to go back to work but can see that maybe I need to wait.

I do hope for the best for you and want you to know that you have helped me not feel alone. I really needed that. Let me know if I can help you.

Rossman

quote name='rossman' post='42034' date='Dec 25 2005, 06:26 PM']

Greetings to all.

This is my first post in your forum. I came here because of having s/s (signs and symptoms) that seem to involve dysautonomia and, I am wanting to get some feedback as to whether it sounds familiar to anyone. I need this support because of fruitless years spent attempting to Dx andTx this problem. I have spent many thousands of dollars, lost my standard of living, and basically have lost my health. I was an extremely high functioning person before this problem began about 8 years ago. Anyhow, this is what I deal with: I do not have tachycardia. I have bradycardia. My s/s are frequently (but not always) associated with my pulse dropping down below about 56. It goes as low as 46. It does this intermittently and without any apparent association to anything. Positon changes consistently set off the s/s, but not necesarily with a change in pulse rate (sometimes I can go from seting to standing and set off the s/s, yet the pulse and BP stay the same). I used to have orthostatic hypotension, but no longer do. My blood pressure stays fairly stable but low averaging around 110/60. It stays between 98/50 up to 140/90. I get brain fog, light headed, difficulty concentrating and slightly nauseas with position changes. I will get uncoordinated to the point of appearing mildly intoxicated. But, obviously it's not just a decrease in BP (and ergo, blood to the brain) that causes the s/s because the s/s will occur with and without BP and pulse changes. Sometimes (but not always) eating sets it off. The s/s are intermittment and disabling. Lying down helps sometimes. But when it's bad, lying down will do nothing. When the s/s are severe, it feels like my head is filled with lead. It can be bad enough to preclude my leaving the house.

I learned some time back that I have to be my own advocate and that I cannot just passively trust the medical communty to Dx and solve this problem without my leading the way. So, if anyone has any suggestions it would be appreciated. I am not asking for a Dx, just some advice as to whether this sounds like any form of dysautonomia any of you may be familiar with. Would truly appreciate hearing from any and all of you.

Thank you very much

Rossman

[rossman]

Hello and welcome. What type of physicians have you seen and what type of tests have been run?

Carmen

Hi Carmen,

As you can probably tell from my other posts, I'm just getting started with this. I haven't had any tests for dysautonomia. Not one doc has suggested this as a possible Dx. I've just in the last 2 weeks come across this as a very likely Dx. I am now certain my s/s are due to cerebral ischemia. The task now is to find out why. Baroreceptor malfunction seems more fitting than fluid volume deficit, vasomotor control, or cardiac output. But all involve autonomic control.

I have had tests and some tx for the following believing them to be the source: Adrenal, GI, Immune (CFIDS) and HCV, and more. Treating all of these brought only temporary relief. I am seeing my GP this week and will talk with her about all of this. I will ask her if we can rule out endocrine first since I have a Hx with that. I want to get really aggressive with testing. This has gone on too long misdiagnosed. I appreciate any advice you may have for testing or otherwise.

Thank you Carmen,

Rossman

[taylortotmom]

Unfortunately, the path to diagnosis with autonomic problems is a long and winding one at best. I am blessed to have a doctor WITH a tad of dysautonomia himself (along with MVP) so he is very compassionate towards the disorder. It took me several years before I made it to him however and had multiple tests run on various parts of my body (GYN, GI, thyroid, neuro) before FINALLY being referred to cardio. He called it within the first couple of visits. So, he has been my primary for three years now. I LOVE him. A tilt table test is the gold standard for dysautonomia but like any test it is neither totally inclusive or exclusive. But, it can be an excellent benchmark. And of course, autonomic problems can coexist with other disorders thus compicating diagnosis even further. Unoftunately, this is a case where you will have to advocate for yourself and may have to go through many doctors before you find one knowledgeable about autonomic dysfunction. Good luck!

Carmen

PS I have reached the point of when I see a new doctor I ask them upfront if they are familiar with the term dysautonomia. This can tell you what to expect. Miraculously, I found a DENTIST and a PLASTIC SURGEON to be two of the most knowledgeable (besides my cardio, of course!). How promising! Unfortunately, I haven't found a gynecologist very familiar with it yet which is disheartening because they see primarily young women.

[rossman]

Unfortunately, the path to diagnosis with autonomic problems is a long and winding one at best. I am blessed to have a doctor WITH a tad of dysautonomia himself (along with MVP) so he is very compassionate towards the disorder. It took me several years before I made it to him however and had multiple tests run on various parts of my body (GYN, GI, thyroid, neuro) before FINALLY being referred to cardio. He called it within the first couple of visits. So, he has been my primary for three years now. I LOVE him. A tilt table test is the gold standard for dysautonomia but like any test it is neither totally inclusive or exclusive. But, it can be an excellent benchmark. And of course, autonomic problems can coexist with other disorders thus compicating diagnosis even further. Unoftunately, this is a case where you will have to advocate for yourself and may have to go through many doctors before you find one knowledgeable about autonomic dysfunction. Good luck!

Carmen

PS I have reached the point of when I see a new doctor I ask them upfront if they are familiar with the term dysautonomia. This can tell you what to expect. Miraculously, I found a DENTIST and a PLASTIC SURGEON to be two of the most knowledgeable (besides my cardio, of course!). How promising! Unfortunately, I haven't found a gynecologist very familiar with it yet which is disheartening because they see primarily young women.

Hi Carmen,

Thanks so much for your advice. I will ask them up front how familiar they are with dysautonomia. Was your condition set off by stress? Is dysautonomia exacerbated by stress? If so, maybe I should give up on the idea of going back to school. Of course, returning to my normal job of being a front line RN is more stressful than that. I really don't want to go backwards with this. Last year I was so sick, it was aweful. First of all, I'll work on the doctor thing. Going to see my GP today. She is great. No ego. She won't act like she knows about something that she really doesn't. But, there is much work I can do with her before referal out to specialst. We can rule out endocrine and some cardiac. I've also read that one of the most common causes of dysautonomia is infection. I have chronic HCV. Even though liver is fit as a fiddle (amazing), maybe the HCV is doing something to my ANS.

Well, I'll get started on this diagnostic quest. It really means a lot to me that you are willing to be there and be helpful with this. I have made a lot of headway with understanding the problem, and I feel supported networking with those who understand.

So glad to hear you have found the right doc for you. Thanks for your help.

Rossman

[gwen]

Hi again, I felt fabulous on cortisone!! but my cardi won't let me have them. My blood tests keep coming back normal. I have issues about ranges on those lab tests. I do take DHEA over the counter. Don't know if it really

helps or not. My chiro does put ultrasound over adrenals as he believes there is still a connection, whether its just me or not. Do have to say I feel better with ultrasound over lower neck , adrenals, slight manipulation of neck. and traction. All of these could help adrenals. I agree, the adrenal thing whould have been easier than this. but, this is what it is. The mind and body are so entwined and western medicine and particular drs. are so stubburn about realizing that one part of the body on one person may affect somewhere else. We all have very personalized cases. a ten minute visit just doesn't cut it. I hope this helps:-)