miranda Posted March 30, 2010 Report Share Posted March 30, 2010 I read this online ........What becomes of people with dysautonomia?Fortunately, the prognosis appears far better than it was in the days when the disorder was called neurasthenia. This is likely because bed rest is no longer considered the treatment of choice. Most victims of dysautonomia eventually find that their symptoms either go away or abate to the point that they are able to lead nearly normal lives. Sometimes, in fact, the probability that things will ultimately improve on their own may be the only thing to keep some of these individuals goingSo, will we all improve ? Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted March 30, 2010 Report Share Posted March 30, 2010 Mirry,I have read that same thing also. It really did make me feel better in the beginning. My symptoms have only improved with time but I still dont feel like my "old" self. Going back to something another member told me is that you have to figure out what is the underlying cause of your dysautonomia and then treat that. In my case I do believe that a severe hormone imbalance is the root of mine. I wont know for sure until I get that all back in balance but so far it's going good! Keep a positive attitude as that is about the only thing you can do to make it through some of these terrible days we all have! :-)KC Quote Link to comment Share on other sites More sharing options...
miranda Posted March 30, 2010 Author Report Share Posted March 30, 2010 thanks for replying , I am finding I am feeling very depressed with all this lately ,my mind goes over and over all the time.Thats interesting cos my blood tests came back as I am in menopause and I am only 41 .So could this be the reason ? Quote Link to comment Share on other sites More sharing options...
lieze Posted March 30, 2010 Report Share Posted March 30, 2010 I'm very suspicious of that because at the time I was staying at my parents my Mom told me that all of my Dad's sisters went crazy when they were 40.I thought to myself I don't think they went crazy at all I think this is how they felt.They have all complained of health symptoms but they are all quite a bit older so I don't know the specifics. The good news is they are all still living and functional the only one that died starved herself to death and just died this past year because she was convinced she would die from a stroke so she quit eating and got down to like 76 pounds before she went. I would guess she was probably late 60's to 70's when this happened.Knowing that this can be hereditary to have these symptoms makes me suspicious although they all live out of state and I don't have any way to talk to them.Some of the behavior though seems a bit neurotic with having to do things specific ways or they believe something bad will happen. I find myself getting the same way with what I can eat and when to avoid symptoms. The reason I am so suspicious also of the hormone connection is my periods got wacky at the same time the other symptoms started. First they went to every two weeks then back to every four weeks then to every three weeks. They stayed at every three weeks for almost a year then and my symptoms have some what stabilized with that. Although this last interval was just two again.`Also many of my symptoms also overlap with perimenopause if you look at the list.So in the beginning I really thought I had a bad case of menopause. Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted March 30, 2010 Report Share Posted March 30, 2010 Mirry,I dont know what type of tests you had done but if you are showing a imbalance than I would look into bio-identical hormones to get them corrected. If you look at some the things I have posted I have been talking about hormones and the adrenal glands. The doctor I am currently seeing is a medical doctor who specializes in womens hormones and she also uses naturpathic medicine practices. She had me do the saliva adrenal cortisol test and my numbers were very very low. She explained that having no cortisol to cope with the stresses of everyday living and no progesterone on top of that was a recipe for disaster! Like I said before it will be interesting to see what happens when I become somewhat "balanced" again. I have noticed since taking the adrenal support tablets that a few things are improving. I didnt get like this over night and I know it's going to be months before I am close to being balanced. Go with your gut and seek out the appropriate help to make it happen. Trust me when I say I have gone through the ringer trying to get someone to listen to me...the new doc understood exactly what I was saying and made me feel like there was a possible explanation! Praise the Lord! :-)KC Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 31, 2010 Report Share Posted March 31, 2010 My symptoms were the WORST when my perimenopause peaked. At 47, I simply stopped having periods and started feeling so much better. A few months later the hot flashes started I had about 10-15 every hour. I thought I was going to die. Each one felt like: 1. I was going to faint, 2. I was having anaphylaxis, 3. I was having a hypoglycemic attack. I started using a bio-identical hormone patch (Combi-Patch) to traet them. They stopped. I feel FAB!!!!! For the first time in my life, since puberty at least, my hormones are steady. What a huge improvement.When our hormones go wacko- so do our symptoms. You are definitely onto something. Feel Better-Julie Quote Link to comment Share on other sites More sharing options...
Noreen Posted March 31, 2010 Report Share Posted March 31, 2010 A cyber buddy who is a patient of Dr.Grubbs saw him recently and he asked her whether she was approaching menopause. Not so in her case.Anyhow he told her that menopause is actually a form of autonomic dysfunction so be prepared for that to be a rough time.It makes sense when you think of all the symptoms of menopause.Noreen Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted March 31, 2010 Report Share Posted March 31, 2010 A cyber buddy who is a patient of Dr.Grubbs saw him recently and he asked her whether she was approaching menopause. Not so in her case.Anyhow he told her that menopause is actually a form of autonomic dysfunction so be prepared for that to be a rough time.It makes sense when you think of all the symptoms of menopause.NoreenNoreen- Thanks for sharing that! That makes me feel better knowing that Dr. Grubb would agree that this can really do a number on the autonomic nervous system! Have a great night! :-)KC Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 31, 2010 Report Share Posted March 31, 2010 I think I've had symptoms much of my life, but they definitely became more disabling after my hysterectomy 2 years ago. I've been on hormone patches since then and while some symptoms have improved or stabilized, others have worsened. When I look at the website for the hysterectomy support group and look at the symptoms reported by women in menopause/perimenopause post-hysterectomy, they track so much with what we all report that I think it can't possibly be just coincidence. It would make sense given the interconnection with the hormones and the ANS. When my cardiologist "officially" diagnosed me with "some form of dysautonomia", his comment was that if you have a primary form of it, then it tends to remain steady or can be somewhat progressive. If it's a secondary form, he said, you usually get better over time. So like KC said, it appears to depend on what your underlying cause of it happens to be. Quote Link to comment Share on other sites More sharing options...
iheartcats Posted March 31, 2010 Report Share Posted March 31, 2010 I'm feeling better than I was 2 years ago - but I am taking a few medicines and working to keep my allergies under control. If I weren't on my meds - I don't know how I'd feel but likely not nearly as well!I am also back on my BCP so I only have four periods a year and that helps (hormones!). I just hope it does improve. They've find no big underlying cause for me yet and I have had tests galore. Sometimes my ANA comes back high, but that can happen to people with no symptoms of an autoimmune disease. Quote Link to comment Share on other sites More sharing options...
miranda Posted March 31, 2010 Author Report Share Posted March 31, 2010 kC , what are the adrenal support tablet you are taking ?thanks for all the replys , seems hormones can bring on these symptoms. Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted March 31, 2010 Report Share Posted March 31, 2010 kC , what are the adrenal support tablet you are taking ?thanks for all the replys , seems hormones can bring on these symptoms.They are called Cytozyme-AD. I have found them online so I know you can get them without a prescription. I take 3 daily-1 at each meal. I have also been taking alot of Vitamin C (1,000mg with each meal) cause that book suggested it. Hope that helps! :-)KC Quote Link to comment Share on other sites More sharing options...
lieze Posted March 31, 2010 Report Share Posted March 31, 2010 I was taking 500mg of Vitamin C daily and I think it was helping.This last bottle I bought is horrible. It's so tart it practically triggers my gag reflex.It's all I can do to get through it. Quote Link to comment Share on other sites More sharing options...
miranda Posted April 1, 2010 Author Report Share Posted April 1, 2010 thanks , I will look into that. I was thinking of getting pottasium because new research says it helps PMT. Quote Link to comment Share on other sites More sharing options...
ethansmom Posted April 2, 2010 Report Share Posted April 2, 2010 I think hormones are a HUGE part of it for most of us- I recently realized this when I went from being 80% of my normal self for the last 7 years, then I got pregnant and BOOM I was down for the count within weeks and stayed that way until things have leveled out recently. That sudden shift in hormones really got me down- and at 7 months pregnant, I'm still only about 50% of my normal self, which I'll take over being 5%. Hoping after baby things will go back to normal and not the other way around.I also wanted to mention that for me, I found out after having a POTS diagnosis for 4 years, that Lyme Disease was the underlying cause and that autonomic nervous system dysfunction is very common in Lyme patients as a secondary condition, because the bacteria invades the central nervous system in many cases. That has been a fundamental piece of knowledge for me, because I can at least understand where it's coming from. Quote Link to comment Share on other sites More sharing options...
ethansmom Posted April 2, 2010 Report Share Posted April 2, 2010 I think hormones are a HUGE part of it for most of us- I recently realized this when I went from being 80% of my normal self for the last 7 years, then I got pregnant and BOOM I was down for the count within weeks and stayed that way until things have leveled out recently. That sudden shift in hormones really got me down- and at 7 months pregnant, I'm still only about 50% of my normal self, which I'll take over being 5%. Hoping after baby things will go back to normal and not the other way around.I also wanted to mention that for me, I found out after having a POTS diagnosis for 4 years, that Lyme Disease was the underlying cause and that autonomic nervous system dysfunction is very common in Lyme patients as a secondary condition, because the bacteria invades the central nervous system in many cases. That has been a fundamental piece of knowledge for me, because I can at least understand where it's coming from. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 4, 2010 Report Share Posted April 4, 2010 For most symptoms wax and wane. I try not to dwell on them. I think this could be part of breaking the cycle. Exercise is also very important. Quote Link to comment Share on other sites More sharing options...
mountain girl Posted April 7, 2010 Report Share Posted April 7, 2010 I am 46 and the dr I am seeing thinks the underlying problem of my pots is connected to "neck pain and possible cervical disc instability". However, I am definitely seeing that I feel worse with symptoms the week before my period. I am still regular, but do hope and wonder if I will notice improvement when I go through menopause and actually stop having periods.So can symptoms go away? Still hoping they can! Quote Link to comment Share on other sites More sharing options...
miranda Posted April 7, 2010 Author Report Share Posted April 7, 2010 Does make me wonder if having periods are a problem for us.I read blood loss will make us more symptomatic. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.