Lindz

Thank you! Yes, I am trying to do that one day at a time. Ive just never had an illness that mentally affected me so much. The over 2 year search in the face of deficits and symptoms that only I can see/feel and no one else can, has made me mental. My family has zero patience for me and things are crumbling. I have a current of anxiety through me at all times. I actually had a dr yesterday subtly (she thought so!) lecture me about "letting things go" and not searching so much and doing yoga, etc etc. etc. Three hour round trip waste of time.

OMG thank you Mike and all of you for your responses. I guess what has me on edge is that no doctor has diagnosed me yet. I was sidetracked for the past year b/c a doctor diagnosed me as having Lyme. I have since come to find out that the active Lyme was incorrect, however, I did have reactivated EBV -- could that account for this craziness? Also, a few things. If anything I have the POTS version with increased heart rate. My blood pressure is super low all the time but no big fluctuations with standing, however, I still have the back of head, neck shoulder pain. Mine is like a burning rod is through the back of my head and my arms and upper body muscles burn. Does anyone experience it like that? I feel like I have a lot of pain issues (Fully body burning). And one of my hands is "bluer" than the other. I also am so thrown by this head pressure and fog. Its severely distracting. I cant hold conversations without internally focusing on how weird my head feels and how this can't be normal. I also have deep eye pain and twitching eyelids as well and blurred vision. Im sorry, reading this back it looks like I am trying to find reassurance for my symptoms. I honestly think I am going mad from this and the fact that no one is validating it. Granted I haven't been to a neuro in 18 months. Im going back next week. I too am a deeply spiritual person. I keep trying to "give this up to God" but can't seem to stop worrying until I get some medical reassurance. And all I keep thinking is okay, another year of ruined holidays because by time I get into autonomic clinic, it will be four months and etc. etc. I am so mentally spent. I almost wish my case was clearer (like fainting, etc). b./c I would get quicker attention. I also am pretty athletic and find that I can't do it anymore. I also lost a ton of weight, but I think mine is from worrying so much. The weight loss on a small frame (im about 120) is making my symptoms worse. When I tell myself that is something really bad, I remind myself of two things. First, Im pretty sure I have a disposition to this. My entire youth was characterized by weird numbing and tingling- I remember my parents worrying when I was as a child and had many tachychardia incidents then and frequent bathroom visits in the night. I also had severe mitral valve prolapse which needed an open heart valve repair. And I am hypermobile. (Not sure if I have ehler danlos). I think those predispose me to this nonsense. Second, I had a strange mini flare of these symptoms in 1999 that went away. So maybe it is some lifelong autonomic problem. I think I might have mentioned I have autoimmune markers as well but no diagnosed disease. What do you think? Thanks so much for listening. And yes angelz, he did put it really well! All of you did!. L

Gitte- I am new and I just posted the thread before yours so I get it. However, maybe seeing a doctor once a year is not enough for you or perhaps not the right doctor??? Is he a specialist in this area? I am so sorry. This is horrible. Lindz

Hi there, I have posted recently before. I am 46 and for the past two years my life has been on the diagnosis/dysautonomia express without a great answer yet. Its funny b/c when it all started autonomic issues was the first self-diagnosis I came up with and about 40 drs later it looks like one of the finalists. So here is my question. I have had a series of issues that point to autonomic dysfunction in connection with some type of polyneuropathy or SFN or some other neuropathy. Despite exhaustive testing, I don't know what this is. I have CEBV but supposedly its not active now. And Lyme is always controversial. I go back to the neuro next week and as he once said, sometimes it takes time for these things to develop, I think the picture is clearer now. But as the symptoms start piling on, I am getting more and more scared that its a) either from a really really bad cause - like paraneoplastic/cancer that we can't find - or that is really MSA in disguise. THe last time we did an MRI and SPECT scan there was an issue with hypoperfusion but not in the MSA area. This may not be relevant to most of you because of age, but it has me so worried. And I feel soooo yucky, like systemically yucky. Do any of you feel that way? I just feel plain sick. A lot of people with neuropathy just feel nerve pain it seems. I feel like Im dying inside and yet no one knows why. I think it was the sort of leaky bladder today that threw me over the edge. First time. Like OMG, here it is, another horrible symptom, its not stopping, its progressing, its fatal. Sorry, its a million train of thought questions, I am just freaking out a bit. I guess Im asking how and when did you make peace with it? Its at the point where Im so scared Im like just please nothing horrible, if I have to live with it I will, please nothing horrible. I feel like Ive been on alert for two years straight and I just want this to end, but I realize a diagnosis by my neuro is only first step, then need to go to testing center, etc. Im so very fried out and so is my family and I just want to get mentally and physically back to them.

Me too Chuske - they are called repetitive sleep onset centrals. You described then perfectly. They can be found in healthy persons too. They are killing me. I had two nights this week of entirely sleepless nights. Very scary. Going to go to sleep neuro at end of month. I also have a lot of other nerve symptoms so something is totally amiss with me.

Yes, I have autonomic dysfunction (not sure if its POTS, neuropathy etc) and one of my symptoms is repetitive sleep onset centrals. Im fine the rest of the night but stop breathing or breathe too shallow at beginning. Going to sleep dr neuro at end of month. L

Sylvie! Thank you so much for responding. I am sorry for your journey as well. I have a very similar beginning which I left off - when this all started I went to a trusted psychiatrist. He tried all different meds on me and I too, reacted very paradoxically. More anxiety. I also feel somewhat betrayed by him because I felt he was always debating me on whether it was mental or physical. Actually now that you say it, he was trying to tell me the same thing you did about the blurring of the lines. So I shouldn't be too harsh on him, in retrospect. I feel helpless. Like this is so critical and emergent to me and yet you wait 5 weeks or 5 months in your case for an apptmt only to be told they don't know! I am literally decaying by the day. But yes, it is on my list to get either back in touch with him or someone else. Regardless of whether I get an answer or not, I need some mental support here, big time! No one needs to live with acute anxiety, whether its generated from the body or mind. There needs to be something that will work on this!!! I need to figure out what it was in the klonipin amtriptyline and others (an anticholineragic) that set me off even more. Thanks again for responding.

Oh and I should add that i do have MVP and hypermobility. In fact my valve was so bad that I needed a valve repair 8 yrs ago,....

Hi Everyone! I will try to make this short, but I can really use some help. This is the second time I am going through the dr merry go round. This has been over two years. I told my husband I feel like when I started I jumped into the river and screamed "Im drowing" with my head above the water; now I feel like only my pinky is sticking up. Feel like everyone has been on riverbank just looking at me go down... I know thats a dramatic place to start but thats how it feels. I am a 46 yr old female. In summer 2013 in my sleep I began to have weird pressure headaches and the feeling of adrenaline shooting up into my head and making my heart rate go up. That happened for a few months and then I began having atypical facial pain/cranial headaches in all distributions - occipital, trigeminal and glossopharyangeal for the past 2 years. These "attacks" would come with burning eyes, dizziness,arrhythmia, nausea and my face would get all stiff, almost like a mini seizure. This was preceded by feelings of intense head pressure rushes. Once I was hospitalized and my prolactin was 44 - which they said can happen after a seizure. But I was awake for these episodes. They said migraines. Brain MRI normal except for some microhemmorages and a white spot they can't say what it is. Anyway, as time went on I began to get burning sensations in my arms and legs and tingling, numbness, joint aches in feet and ankles. Shoulder and neck were the worst. Burning mouth syndrome. Nose tip cold. EMGs negative. Dr. said probably SFN, but no biopsy taken. Then a well known Lyme dr said I know whats' going on you have reactivated EBV. Also Lyme specific bands so probably Lyme. So Ive been treating for a year and getting worse. Now I am officially scared. Other things are piling on, like when I fall asleep at night, I stop breathing within seconds. Like I am conscious of this and sometimes if I doze off, I wake up in five minutes with chest pain and not breathing. I feel like I am rocking on a boat while I am sitting. OTherwise balance is ok. I have very low blood pressure but don't feel dizzy or faint when I stand. Lastly, I have TERRIBLE TERRIBLE palpable ANXIETY. Just typing here I am shaking my leg and fidgeting. The littlest tasks overwhelm me, esp getting my kids ready for school. I feel jumpy (thryoid levels okay, barely). Did blow a fuse in my autonomic system? I can't do this anymore. I feel like I present to doctors I present with this anxiety and they think its psychological. I feel like a switch went off in my brain and I feel psychotic. Any neuro drug Ive tried makes it worse. It definitely sounds autoimmune of infectious. 15 yrs ago I had a 6 month episode just like this (a little milder). It went away on its own. Now its back with a vengeance. I also have something called a polyclonal gammopathy (igm) in my blood that indicates infection or inflammation. Its been there for 15 years. I do have a positive very low ANA and anticardiolipin antibodies. Always negative on rheum antibody tests. Something is in my body doing this. I had one dr say it cant be EBV because I don't have EBV DNA in my blood by PCR. As for Lyme, I have lyme specific bands but my lyme dr is not sure if I was just "exposed" to lyme or if I have lyme disease. I have no idea what difference that makes - doesnt make sense to me. Does this sound like I have a dysautonomic element to it? I feel acute, like it has impacted my brain. Its that bad. I wish someone would just hook me up to an ivig or give me SOMETHING to try like a steroid, etc. I guess Im asking can dysautonomia do this to a brain or would I be showing other symptoms (loss of balance, falling, etc. etc.) I am going back to a rheum, neuro and infectious disease dr in next two weeks. I am terrified that no one will have any idea. Should i mention dysautonomia, am I even in the ballpark? I have three kids and Im snappy and crying and my husband is frustrated with me. I don't want to go out and even do errands anymore. Every chore is overwhleming to me. I am so scared at whatever hijacked my body. Finally, do you need referrals to mayo, hopkins, etc. I am afraid at this point who would even refer me, I think they think Im nuts !) Your stories are all inspiring. I need some hope! L