rossman

Rossman,

To experience all that tragedy and still be around to share your history must mean you are a very strong women.

I hope you get some relief when you get more help with the adrenals.

I was completely healthy one day and sick with autonomic dysfunction, POTS and Gastroparesis the next. I had a stomach virus and a very stressful few days and felt for the past year that I predisposed myself to this illness.

Well after getting as low as I could possible be I realized I can no longer hold myself accountable for being sick. Yeah maybe the virus had something to do with it but the stress couldn't have caused it. I've asked my very reliable doctors if I could have caused this and they told me no many times. Anyways so I have to let myself off the hook and deal with what is and not what happened. Try not to hold yourself accountable for the things we can't control in life.

Hang in there and I hope you can find a doctor that will help you get the answers and support in finding treatment.

Your in my thoughts

Dayna

Hi Dayna,

Thanks so much for your feedback and support. It means a lot to me. I never really even thought about the issue of me blaming myself for this illness. I guess in a way I do because I have believed that it was my driven, type A personality that caused me to overstress myself in dealing with the crisis' which is what set off the illness. It certainly is what blew out my adrenals. But, how could I not respond like that. It was my family. My daughter is now independant and raising my beautiful grandaughter, due in part to all the energy I put into helping her get as well as possible. So, I think that you all have something there with blaming myself. I will look at that more closely.

Thank you,

Rossman

ps. I'm a guy

Thanks everone for your help. I hear you that I need to get to an autonomic specialist to get this properly diagnosed. That will be my top priority with this. I most definately have a dysautonomia. The question is whether it's primary or secoundary.

Thanks everybody,

Rossman

Rossman

I am so sorry that you have been through so much--it sounds like enough grief and pain for several lifetimes. You must be a resilient person.

Regarding "the question is, did I set off a predisposition to dysautonomia than I'm now stuck with, "

please do not blame yourself for your condition. I think many POTS patients end up asking themselves what they have done to cause themselves to have this condition, compounded by the fact that doctors tend to tell us our symptoms are a result of anxiety and depression. I am not aware of any studies that show a specific connection between stress and developing POTS. However, stress can make POTS symptoms worse, I think--as is true of other conditions.

It makes sense to seek out a specialist for appropriate diagnosis. If the doctors listed are too far away to be practical for you, can you try to see an electrophysiologist in your area? They are usually knowledgable about POTS and can properly interpret tilt table tests. If you have not had one of these tests, that would be one of the first steps in diagnosis.

Many of us have found good relief from a variety of medications. You mentioned you are on florinef but are experiencing high blood pressure? Are you also on a beta blocker?

Take care and let us know how things go with getting a diagnosis.

Katherine

Hi Katherine,

Thanks so much for your response. No I'm not on a beta blocker. I mostly have trouble with hypertension on florinef in the Am. Everyones BP is higher in the AM because of the release of corisol. But, for me enough florinef to stop the s/s (signs and symptoms) during the day, means HTN (hypertension) in the AM. I am having a very difficult time getting it right. Also, even before going on the florinef, I usually didn't have OI s/s in the AM. I usually start in with the OI s/s as the day goes on. This usually would indicate that one doesn't have a fluid volume deficit. As you know, the mechanism of action for florinef is to retain sodium which causes fluid retention, and ergo increasing the blood pressure and easing the s/s of OI. Even though it seems that I don't have a problem with fluid vol deficit, the florinef eases the OI s/s. But, I suspect it's not the right drug for me. So, do people take a beta blocker with the florinef? Sounds kind of odd to take an anti-hypertensive with a drug designed to increase BP. Maybe the mechanism of action works better. Let me know.

I will look into the electrophysiologist and tilt table testing. We have a few neurologists here, but I highly doubt they have this equipment. I called and asked their receptionist if the doctors were familiar with diagnosing and treating dysautonomia's, and it didn't sound too good. I will continue the search.

Thank you,

Rossman

Hi everyone,

Thanks so much for all the responses. Your responses gave me what I was looking for. All of you describe s/s that I have on some level. I didn't realize that one could have mulptiple system malfunction without it meaning something dreadful, like shy drager. Maybe I was getting a little paranoid. I guess it really does make sense that one would have mulptiple sytem malfunction with dysautonomia without it necessarily being something as serious as shy drager. Anyhow, thank you for supportively responding to my temporary hysteria.

Most of my life I have been very happy and healthy. I was a cross country runner. A very vital energetic person. I was always a little wound up believing that I was invincible. I started getting sick about 7-8 years ago following an extremely stressful period in my life. At that time I was completely fed up with alopathic medicine and went strictly alternative. I did this because the alopathic docs were all wanting to just feed me anti-depressants and they weren't helping. Kind of understandable that they thought it was depression because I had just been through ****. But, I already had PTSD and my life came apart at the seams (again) with my kids in a car wreck killing my son and severely permanently brain injuring my daughter. I got divorced, lost my property, my dad died unexpectedly, filed bankruptcy, graduated nursing school and was studying for state boards all within a few months. Basically, I was overwhelmed. And being the type A superman that I am, I ran around like an army medic trying to patch it all up. Horrendous things continued happening and it got worse and worse until I crashed into a heap of grief and despondency. Problem was that I didn't have the sense to stay hunkered down. I got back up and went at it again and again trying to fix the ongoing disasters. I continued until I couldn't work or function very well. So, it's undestandable that they thought I was depressed. And maybe I was, somewhat. But when I decided to leave alopathic medicine and started really researching some things, I found that I had blown out my adrenals. DUH!! So, I went to work on the adrenals with some pretty good results. But, it was too late because I was beginings to have immne system problems that acted very much like Myalgic Encephalomyelitis. (I do not like the term CFIDS. It's so innapropriate for a title of an illness that is so very much worse than just chronic fatigue.) What I experienced with ME was debilitating and much, much worse than any of these other manifestations of dysautonomia that I've experienced. Anyhow, I got the immune and adrenal problems minmized enough to see that what was at the core (so it seems so far) of all this is a dysautonomia. It has taken some very drastic measures to get control of the immune problem. I am currently mostly struggling with OI. I was so severely sick with the immune dysfunction before that I coudn't see the dysautonomia. Now I can see that it seems the dysautonomia was the core issue all along. And this is what I read in all the research on CFIDs and FM. So, the question is, did I set off a predisposition to dysautonomia than I'm now stuck with, or can I correct this illness backwards in the opposite direction that it unfolded. So far it has worked. I am at this place of looking at and hoping more work on my adrenals will correct the dysautonomia. After all, the catecholimines from the adrenals are major in autonomic nervous system function. I believe that what happened was that I had undiagnosed adrenal catecholimine insufficiency as well as adrenal cortex problems. This undiagnosed insufficiency caused the dysautonomia. Or, it may be the dysautonomia. Makes sense with my history and symptoms. But, we shall see. I certainly do not want to go any further being misdiagnosed and creating cascades of other ilnesses, like what has hapened previously. I am trying to find a better GP. Anyone know good a doc for this problem in northern California? On the good doc list I see specialists listed only in southern California. There are a few GP's listed a few hundred miles away that I'm considering. But, if I am going to go hundreds of miles it shound be to a specialist, or at least a very good GP who knows this stuff well.

So, I am new to what dysautonomia is all about and how much of an issue it is for me. I cannot function with the OI without Florinef. I am trying to find a better alternative than florinef because of having a difficult time getting the BP balanced out. Don't want to stroke out. Can't take midodrine.

I want to thank everone for your support. I am scared and tired of struggling with this problem. It has robbed me of my life. I'm glad that you are all here. Sorry that I went on so long. Promise to now do tat next time. Kind of wanted to let everyone know what I'm dealing with.

Thanks

Rossman

If you haven't been diagnosed with Shy Drager, I would be careful to assume your illness will take the same course. What are your symptoms? Many here faint and have dizziness, blood pressure fluctuations and other issues that are similar to Shy Drager. Perhaps you have POTS or another form of dysautonomia.

Try to be specific in asking what symptoms you'd like help with to others here. I bet you'll find many others with similar issues.

Amy

Hi Amy,

I really don't believe that I do have shy drager. I sure hope not. But, there are a few things that caused me to consider putting a little more energy put into ruling it out. Those other reasons are basically that I have other body systems malfunctioning as a direct result of the dysautonomia.

It was a because of taking midodrine and subsequently having all my body systems work properly that I was able to see that I have multiple organ systems that have not been functioning well. In fact they are severely malfunctioning. I thought I only had the cardiovascular and cerebral hypoperfusion s/s (signs and symptoms) like cognitive difficulties, neck pain, uncoordination, faintness, etc. And those are enough. In fact, I am disabled from those alone. But, now I am seeing problems that I understand to go beyond these cardiovascular s/s. These s/s also do not fit into the typical category of OI, POTS, NMH, CFIDS, etc. I have multiple system problems. Multiple system malfunction sounds like shy drager. That's why I was asking for anyone dealing with this disease. I just wanted to compare notes. And, I thought I would first ask if the group had any members with this disease before listing all my suspect symptoms. I did it this way because I really doubted the group had anyone with shy drager. And I didn't really want feedback about it from a person not personally familiar with the disease. Any one of us could look s/s up in a book about a disease, but I was hoping to connect with a person with the disease.

Hope this helps,

Rossman

Anyone in the group with shy drager? If so, are you up for a few questions? Which type do you have? What were your early symptoms like? What was the onset like and how long did it take to progress? How long have you had it (the symptoms, not the diagnosis) How are you today? How do you cope?

My doc said that what I have acts like shy drager, except for one thing that he claims rules out the possibility of this diagnosis: I have had these symptoms for about 7 years. I don't know if he is correct because what I have read is that shy drager takes 7-10 years to get severe.

Rossman

Florinef has a very long half life. Very potent drug taken with adequate salt. I have a difficult time getting the titration right. I cannot tell if a particular dose is correct for like a week. Getting that balanced BP with no s/s, is difficult for me. Florinef is completely worthless without adequate salt and fluid intake. That's probably why for me it is easier to adjust the salt and water intake than to adjust the florinef, in pursuit of s/s relief. And for some other unknown reason, florinef's effectiveness fluctuates for me. All in all, it has been a good drug. It stops my s/s, but I have to really watch my BP closely, especially in the AM. Getting enough florinef action to stop the s/s during the day usually involves a high BP in the AM. Still working on it. Currently in a place that florinef isn't working at all. I don't know why. I think the action of this corticosteriod is effected by stress, salt and fluid intake and who knows how many other variables.

For me, if I get a headache on florinef, it means my BP is up.

Rossman

Greetings to all,

Sorry that I haven't been around much. I went back to school because I was feeling better and ended up fairly busy. I was determined to not overstress myself which is my old M.O. I have done well with only 1 math and 1 art class.

Anyhow, I am wondering if anyone has had a similar experience, or even has any knowledge of what my midodrine experience may mean. First of all, I have been taking florinef for about 2 months with very good results until recently it has seemed that the symptoms had begun to return regardless of stable BP. So, I started midodrine and my God!! This is the stuff. I felt like my old self. Things started working that hadn't worked in years. I was a little wired up, but cerainly symptom free and feeling like me. And, unlike the florinef problem of always having to be careful of hypertension, my BP on midodrine stayed very stable. This lasted for 2 days, then the opposite happened. I began to feel like everything just locked up in my system. It wasn't the dysautonomia symptoms, rather, it felt like I was toxic . So, I waited a day and let the bad symptoms wear off and then tried just a half of a tab (2.5mg) of the midodrine. This put me in bed for almost 2 days and I haven't been the same since (day 3 now). So, midodrine worked better than anything I have ever found for my illness, but then I had a wierd reaction. It wasn't a drug allergy. It felt like I was taking something I really didn't need, or (and God forbid) my nervous system is very damaged. And actually, I remember having similar experiences with anti-depressants. Work great for a few days, and then make me feel horrible.

Sound familiar to anyone.

Peace, love and happy valentines day to all.

rossman

The midodrine does not help me. Although my Cardio still has me on it. He tried me on it alone and it did absolutly nothing, then he put me on Florinef along with the midodrine. I dont know why he kept me on midodrine it doesnt work, but my b/p is fluctuating between low and almost normal, better then need to go to the hospital low. Hope this helps you. Vanessa

Hi everyone,

Just diagnosed with POTS and have just been rxd another medicine. Thi sone is to raise my blood pressure. It's called midodrine or something. Does this work for anyone?

Hi Everyone,

I am knew to undestanding these illnesses and am a little confused about the Dx of POTS. I thought POTS, abreviated for "Postural Orhtostatic Tachycardia" was defined as orthostatic hypotension with an overcompensation of heart rate (120 or higher). I had pretty much ruled out having POTS because I don't do the tachycardia. When I go from lying or sitting, to standing, MY systolic BP drops 25-30 and pulse goes up 25-30, but I don't get Tachycardic because resting pulse was at 50 before the postion change. My pulse doesn't go over 100. I also understood a symptom of POTS to be a worsening of the tachycardia with prolonged standing. I do not do that. The hypotension gets worse with prolonged standing, but my pulse doesn't continue to climb. I had decided that maybe I have OI, not POTS. Possibly the flip side of the same coin anyhow. I need to do some more research. But, if anyone has advice, bring it on.

Also, I haven't tried Midodrine yet. But, I have tried Florinef and it did correct the orthostatic hypotension, but not the s/s. I am still symptomatic. So, today I might talk with MD about trying Midodrine. I think getting an accurate Dx first is the top priority. I did try Pseudofed because it was the only sympathomimetic I could get without a prescription. It completely wiped out my s/s. I felt great. But, only for 3 days and then it stopped working and made me feel worse. I do understand that taking self Dx to this extent is pushing it. But, I feel I'm running out of time. I feel that this illness is getting uneccesarily worse. I believe some of the progression of my illness is preventable and if it goes on misdiagnosed like this, I could go way over into the point of no return. Is dysautonomia progressive? I guess maybe it depends on several things like underlying cause, etc.

Anyhow, I would appreciate any feedback.

Thanks a bunch,

Rossman

This will make you all laugh.

i caught the flu again! Ive had it 3 times within 35 Days.

Interesting topic of the flu making s/s worse.

Until recently I had thought my illness was entirely an immune imbalance set off by adrenal insufficiency. Well, those Dx are valid, but what I'm coming to see is that that's not complete. At the core of my illness is some sort of dysautonomia. I have the adrenal and immune problems fairly well under control, but what I'm left with is a symptomatic orthostatic hypotension that fits some definitions of dysautonomia. I believe this too was set off by the adrenal problem because the adrenals play an essential role in the function of the autonomic nervous system.

What this has to do with the topic is that the last time (last winter) I got the flu, it set off a year of cyclic illness. Severe illness that was not recurrent infections. It was my system going bonkers. I cycled up and down every 7-10 days getting one day of mild s/s and then going back up into severe illness. This went on for a year. I thought that the flu had spun out my immune system, but now I can see that maybe it had set off the dysautonomia. I have been going to great lengths this winter to avoid that happening again. It was aweful. I spent 80% of my waking (not counting when I was asleep) hours in bed. I remember describing to my GP that I felt like my head as filled with lead, or that there was no blood going to my brain. Well, there wasn't. I had described all the s/s of orthostatic hypotension, and he didn't get it. Amazing I'm still alive.

So, I am still working on Dx my illness. But, it is lookng more and more like some form of dysautonomia. And, if my illness last winter was a dysautonomia, then yes, infections set it off big time.

Rossman

Great idea...I chose my name based upon my daughter's iceskating achievements. She is working (in her spare time) on completing the two dances left to earn her a gold medal. Her spirit in iceskating despite some nasty judging and her perserverance in spite of it seemed like good qualities to emulate!

Cool topic. Amazed that I hadn't seen it before. I've read some very interesting posts.

I use "Rossman" because several people from completely different circles started calling me that. It's very interesting how I can go into a new community where no one knows me at all and eventually someone starts calling me Rossman, and it sticks. My name is Ross. Sometimes I'm called "dress for less", but Rossman comes up a lot, and it sticks.

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

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

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

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 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

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

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