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rossman

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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
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