Anyone Not Know Cause Of Dys? Also Symptoms Not Positional

[Lindz]

Hi everyone, I had an ANSAR and no real explanation from my neuro for why all this neurological craziness is happening. Ive developed all sorts of neuralgias, now palpitations, obstructive sleep apnea and Im getting really scared that something sinister is behind this. I was having autonomic "seizures" two years ago (nausea, dizziness, arrythmias, rising sensation), but the EEGs never picked them up. I have not been the same since. I walk around foggy, with a burning headache, head pressure,burning eyes that I feel my eyebrows sometimes droop. Mine are not positional related. Its almost like all the time.

I can't get in to see an autonomic neurologist specialist until March. Im really scared. I do have reactivated EBV and had Lyme in the past but can it cause all this? I also had mitral valve repair a few years back but felt Awesome until those crazy seizure-like episodes. Im depressed, anxious, etc.

I am going to try beta blockers this week because the neuro thinks that the adrenergic tone of my test results may be causing my anxiety. The only way Im coping is with Klonopin to get me through this.

How does everyone deal with the uncertainty and fear?

L

[lewis]

Welcome to the club. I have been through 2 years of testing all with no answer. Everything except my first ttt was normal. My ttt with my dysautonomia neurologist was normal. Weird. There isn't a test I've that I haven't had. Just try and find what helps you. I have a long list of what I found affects me. I have some good days now. I just take it day to day. I stay away from gluten, any chemically made vitamins, anything fortified, lift weights at the gym and take propranolol. I am no where near where I use to be but my quality of life is better than when I was at my worst. It's a challenge to figure it all out that's for sure

[Sylvie33]

Hi Lindz, I've written you before!

It gets better! It does...I never would have believed it even one month ago. I ain't out of the woods, but here my story...

My myriad of dysautonomia symptoms rode in on a huge wave of depression eight months ago. Not to mention anxiety! I was so freaked out I was numb -- beyond crying. I was especially grief- stricken about my job. But I am much better now emotionally. Although I've had a bit of improvement physically, I am still mostly bedbound. Recently got back two positive biopsies for small fiber neuropathy. Scary but validating.

So here is what helped me:

- great partner who flipped into a caring mode --- before this I was the big-time caretaker sort.

- marking endless calls and landing a great doctor who helps with the others. You can tell you found someone good if they talk on the phone with you before an appointment. Yet my team is still incomplete, and two neurologists were washouts.

- said good Dr. is a psychiatrist and a neurologist, so we converse in depth about my dysautonomia and my depression. I can freak out about symptoms with him. I try not to at home. I meet with him 1-2 hours 2x/month. Takes my bad insurance! Very comforting and healing.

-I tried CBT therapy because I read it helps with chronic fatigue. Found out it did not work with me (a lot opposition on CFS forums too. ) Involves a lot of goal setting which is impossible with this illness.
Switched to an older, very wise therapist. She simultaneously gives me permission to be sick while believing I will get better. 1x/wk.

--A few good friends. My best friend of 30+ years has nursed many friends with HIV and lost more. He lives in another city and I haven't seen him since March. We talk at least once a week and I feel like he takes me exploring each time: we've gotten so much closer.

(I've also lost many friends. I grieved over this too, but I get it. Illness and depression is not a welcoming situation: I've learned a lot about relationships. Not easy.)

-British drama and mystery series. Watch them when I can't sleep --they often knock me out. Can repeat over and over!

-light yoga followed by massage (great grown kid picking up the tab). Started 4 weeks ago. This NYC cynic is sold on the notion of "laying on the hands" to heal.

--grown kid. He is so sweet-- I don't want him to have a depressed, sick mother. He just moved across-country and I want to visit. Big motivator.

-Getting out and talking to people. Even if it is just in Dr. offices. Just pretend you're not so sick. Stick with strangers if you feel too miserable to really socialize. I still don't feel well enough to hang out with people, but I made it through Thanksgiving (easy group).

-Drugs. My doses are baby doses since I had serotonin syndrome -which kicked off the dysautonomia. I take a total of .75 Klonopin in three doses for sleep. Also 15. mg.of mirtazipine and 10 mg. Nortriptyline for depression.
I also take a slew of supplements, but can't tell if they as doing anything.

All of this is an ordeal, no doubt about it. It is a wonky, unpredictable, really unpleasant illness that is really difficult to diagnose and treat. Depression/anxiety are so difficult even when otherwise healthy. I think it is really important to deal with these ....over everything else.


Please try and have patience and be kind to yourself....try to find one good doctor, a counselor/therapist, and one good friend. If you are religious, lucky you, all sorts of resources.

You found this site...I remember you from earlier posts, you are smart and you obviously have strength!

All my best,

Sylvie

[Lindz]

Thanks. I guess not everyone is a straighforward case of adolsescent POTS!

How do you all cope with the, "Well what if it turns into...." It think thats my biggest challenge is not exactly how I feel now but what if this is developing into MSA, or another bad disease. I feel like I keep acquiring new symptoms every day and then I keep reading how a lot of autonomic dysfunction can herald other diseases in the future by years. Im sorry, Im being a fear mongerer and don't want to worry anyone.

I have to try and live in the moment.

Thanks so much for your replies. I do try and exercise but have cut it down mainly b/c of my psychological limitations. This is mainly mental for me , like how could I go from the highest functioning person to this. I am sorry you are bed bound Sylvie. And thanks for answering my posts!

[Sylvie33]

Hey Lindz,

Sorry I rattled on so. But try hard to stay in the present. Two months ago my digestive system was frozen: now totally changed. My strength is increasing. Most importantly, my depression is lifting: which is essential for dealing with the other stuff -- I have far less fear now and I'm doing my best to avoid self-diagnosis of worst case scenarios.

Not to say I don't freak, but it is not my overriding state.

S

[MomtoGiuliana]

I agree w Sylvie. It is difficult in our culture/society to do so, living in the present! Meditation and breathing exercises helped me. A book that helped me was Spontaneous Healing by Dr. Andrew Weil. His book actually includes some helpful breathing exercises for meditation or just for relaxation/calming. I think it is important to stay hopeful. There is good reason to be so. Many people with this class of conditions improve, either just over time or with treatment that helps.

[jackiemxoxo]

Both lyme and mitral valve stuff can cause dysautonomia issues. Those are two big culprits right there that may be influencing your symptoms. I would not jump the gun and think you have something like MSA when you have known issues that can cause it. From my experience, my symptoms get better then worse then better so I just kind of take it as it comes. I am thankful for the periods of wellness and I try not to stress myself out too much because anxiety can make the symptoms so much worse. After 5 years, I truly don't know the cause of my symptoms and sometimes I worry that that there is a serious underlying cause but until then I just try to focus on the positives. Most doctors will treat symptomatically anyway because finding a cause it tough and even then most of the time only treatment is still symptomatically.

[potsticker63]

Hi everyone, I had an ANSAR and no real explanation from my neuro for why all this neurological craziness is happening. Ive developed all sorts of neuralgias, now palpitations, obstructive sleep apnea and Im getting really scared that something sinister is behind this. I was having autonomic "seizures" two years ago (nausea, dizziness, arrythmias, rising sensation), but the EEGs never picked them up. I have not been the same since. I walk around foggy, with a burning headache, head pressure,burning eyes that I feel my eyebrows sometimes droop. Mine are not positional related. Its almost like all the time.

I can't get in to see an autonomic neurologist specialist until March. Im really scared. I do have reactivated EBV and had Lyme in the past but can it cause all this? I also had mitral valve repair a few years back but felt Awesome until those crazy seizure-like episodes. Im depressed, anxious, etc.

I am going to try beta blockers this week because the neuro thinks that the adrenergic tone of my test results may be causing my anxiety. The only way Im coping is with Klonopin to get me through this.

How does everyone deal with the uncertainty and fear?

L

i dont know if this helps or if this something youre already familiar with but theres overwhelming evidence now that many cases of POTS are autoimmune, particularly if you had a very sudden onset.

the study: http://jaha.ahajournals.org/content/3/1/e000755.full