The Good News: No Epilepsy. The Bad News: Autonomic Damage is Worse

[Carolina]

So Dearest Sjogren's Angels,

I saw the Epilepsy Specialist today.  The diagnosis: my jerking and trembling, and my episodes of collapsing are related to worsening damage to my Autonomic Nervous System.

https://en.wikipedia.org/wiki/Autonomic_nervous_system

Sjogren's is a result of auto-antobodies attacking the parasympathetic system which is part of the autonomic system  that controls the body's moisture production.

The second 'bad news' is that there no medication for my problem.  The shaking is just moderately unpleasant, but the collapsing to the ground is downright inconvenient. 

So, I will just have this condition, as it stays the same or gets worse, with no treatment.
I am very sick with this bronchitis which is going around, and that is new for me, too.  I haven't been sick for over 3.5 years, since I started IVIG.  So I am just not a happy camper all around.

The collapsing is an orthostatic problem (when I stand up) and a failure of my autonomic system to make the adjustments necessary to stand up without falling down.  I've been tested several times for orthostatic hypotension (falling blood pressure on standing) and it isn't that  So it's some other part of the adjustment system.

In fact everything is way more complicated in our bodies than those cartoon diagrams that I saw growing up.  The human body is amazingly complex, and every time I see a new specialist my mind boggles.

The shaking and jerking and trembling of my left side is less clear to the doctor, but he's very clear that I don't have any form of epilepsy and that there isn't any known treatment or medication.

If anyone reading this has experience with my symptoms, do let me know. I feel very alone in this, but my husband is very supportive, which is a big help.

Hugs, Elaine

[Carebear]

Dearest Elaine,

I am very sorry to hear the outcome of your appointment with the Epilepsy Specialist.  I don't share your symptoms so my support feels flimsy, but I will say that you are not alone.  I hear you.  And what you are experiencing just stinks.  You are one strong woman.

I am happy to hear that your husband is being very supportive, Elaine.  Very happy to hear this.  Hugs to you and your husband.

[gurs]

So sorry your dealing with this. I also have autonomic dysfunction with my SS, but after my last sinus surgery in August, it did something and my symptoms are much worse. I developed high blood pressure, I sweat more, so darn dizzy cant stand, bathroom issues etc. more trouble swallowing, everything much, much, worse. Surgery must have triggered this.
Its been a nightmare. My rheumy and cardiologists have all said its from the autonomic nervous system over reacting and nothing really to help. Im hoping to try rituxan soon to see if it helps at all, but Im not getting excited. No one understands just how debilitating this is. Again the lack of info on Sjogrens on this is lacking to say the least. Many of us have this, each to a different extent.

Hope you can find some relief with it.

Gursie

[Joe S.]

(((hugs))) I am so sorry you are at this stage in the disease. Our lives are harder when our bodies are out of sorts. I did not understand when the neuro told me I was be checked for sjogrens and I should be using a cane. At that time the two did not connect. I was told that there was nothing wrong with the jerking. I did not understand that comment until your post today.

I wish you all the best in managing this change in your health. Yes, I use my cane and I have a walker in the back of the van to use when we are out running around.

[Deb 27]

Sorry you are having such a rough time right now. I am sure you've tried the gluten free, dairy free approach at some point in this disease. It looks like you are taking great supplements and medications. I hope you find some answers for this and relief soon. Hugs!!!!

[gurs]

Oh, I have to add I did have a brain MRI two weeks ago. Nothing really showed except some white matter (normal). Its so funny to have this terrible symptoms just like MS and other neuro diseases and nothing shows up? this Sjogrens is just plain scary.....

Gursie

[irish]

Caroline, sorry to hear that you have got so much going on with your health. It is terrible that you have to have those "falling spells" cause not only can it scare the heck out of you, but there is always a chance you could crack a bone. I hope you are not falling but sort of sliding down onto the floor.

Seems like this past year has been hard on all of the people on this forum. Hope things can straighten up for you, me and everyone else. Irish

[Carolina]

Hi Irish and all.  What fabulous support.  Everything and anything you say to me is of great comfort and full of love.

Irish, I just sort of crumple to the floor.  There is no 'momentum' in my fall because I'm not moving forward or tripping.  My bones are very very strong (which is a very good thing).  The worst fall occured when I was between pieces of furniture and I scraped my right side against a waste basket and got an ugly bruise, but not serious. 

Because I wear braces, and because I have such profound Peripheral Neuropathy I really don't 'move' very often.  Once I'm over this 'bronchitis plague' I hope to get back to the Fitness Center and into the pool for exercise, and onto the NU-STEP as well.

The Epilepsy doctor thought the falling/collapsing was some sort of autonomic problem, not exactly blood pressure, but more like signalling within the system.  The jerking really has no explanation, but none of this hurts or is very scary.

With epilepsy the patient usually 1) passes out  2) and some forgetfulness about what happened) 3) loses bladder control.  I don't have any of this, and I knew epilepsy wasn't my problem.  But I had hoped the doctor would have a magic pill anyway.

HA, Magic Pill, where are you???

My most 'magic treatment' is my IVIG every four weeks, which has kept illness completely at bay for 3.5 years, and I'm sure it is moderating this bronchitis..   But this magic treatment is so expensive, beyond my wildest dreams of anything EVER, at $20,000/MONTH.   I guess I'm worth it, someone has to be, right?

So, I'm not driving any more, ever.   That means my husband will always be with me when I go out, which is good.  And I have my medical alert, if he leaves the house and I am alone.

You know, I never expected to live past age 59, and here I'll be 75 in a month.  So it's all just bonus time.  And if this bonus time is rather challenging, at least I've found you guys.

Hugs,  Elaine

[Nymph]

Elaine, I am sorry!

MY autonomic symptoms are more subtle and I have never fallen from them. However, in my POTS support group my friends have the symptoms you describe. I can ask them about the jerking because I think that one of them was having worse jerking as a side effect of some medication.

In terms of standing up, I do not have OH either. However, wearing compression is extremely helpful to me. IT is less for your ANS to "handle" when you stand up if the hose are already doing some of the work. You can put them on first thing in the morning and see if that makes a difference. I use 20-30 strength but some people need 30-40. There are some nice brands out there. I'd be happy to share the ones I like.

[Carolina]

Thanks, Nymph,

I have some compression stockings, which we wear for long flights, like to China.

Where is your POTS group?  Is it on line?

I definitely have something from standing up.   I think I've ruled out the medication I'm taking, but I'm open to all ideas.

This bronchitis is reminding me  why I'm so glad to don't get sick any more (except for this bronchitis of course!).  Being sick sucks. 

We've been shopping for a new car the past two days since one of our cars was totaled  recently.  I really dislike car shopping.  It just feels so fake and phony.  I mean why is it a negotiation?  Can't it just be the price is the price?

Well, soon it will be over, since we've pretty much decided what we want. 

Cars have so many features now, It's wonder they don't brew fresh coffee too!

Hugs, Elaine

[irish]

Compression stocking are a treatment of the autonomic system postural hypotention. It is just possible that you would benefit from putting these on in the morning. I know they are a pain to put on. The Jobst stockings require a prescription to be eligible under medicare, I believe. Also, if you can find someone to help you with these stockings it helps. They take a lot of endurance and energy to put on.

Another thing you could do is put on ACE wraps on your legs. These have their bad points also as they tend to slide down and have to be rewrapped during the day. Sometimes people benefit from some compression just up toe the knees. If you need it up on the thighs then the stronger support hose work better as they give more consistent support over a larger amount of vascular tissue in the legs. Good luck. Irish

[Carolina]

Hi Irish,

I think the problem is the same one I have with my toes.  My toes are purple because there is so much nerve damage from my neuropathy that blood is not pumped into my toes adequate.

So I makes sense that my lower legs, with profound neuropathy, have so much nerve damage that the veins do not get enough help to pump the blood up to my upper body and head?

I  will ask my husband to help me put on the support stockings.

Question?  can I wear them over night?

Hugs,  Elaine

[Nymph]

Hi Elaine, with your circulation problems it might not be a good idea to wear the stockings over night. I would ask whichever doc knows the most about your neuropathy. Many people use the strategy of putting them on in the morning in bed before they get up.

Yes, the POTS/Dysautonomia group is on Facebook and it's called Dyslife Carolinas. As I recall, you live in NC, so there is probably also a local group in your area that meets up on a monthly basis or so. I have met some lovely people through it, and gotten a much clearer picture of how serious the issues can be, as mine is fairly mild.

[Nymph]

If you ask to join just tell them I sent you. 

[anita]

Elaine,

Your type of collapsing is very common with orthostatic hypotension.  And I will add that it can be difficult to confirm this Dx because you have to catch it in the act (of BP dropping) in 'some' cases.  I assume you have had the tilt table, both with and without the medication to prompt an episode??

The autonomic system controls basic functions, but doesn't just collapse without involving one of the major systems, like BP, heart rate, GI tract (which sometimes can cause problems with the vagus nerve...you should read about this and see if it fits your symptoms).  So something is being triggered and causing the collapse.  If it is the BP ( and they haven't 'caught' it yet), then there IS medication to treat this problem...actually several different medications to keep people from passing out.  I have had this autonomic dysfunction (of EVERY autonomic system) for over 20 years now and can tell you I understand the frustration and bothersome.  I too have some shaking...just my left side, but, like you, it's not a big deal (I just drive on).  The BP however, is a different story and mine is so bad that they 'caught' it the first time and every time they check...it is that bad.  Even with medication, my BP drops 30+ points upon standing.  The medication may not eliminate it, but helps me to be able to function.

You need to be evaluated by an autonomic specialist (different than an epilepsy neuro).  There isn't many of them (that solely specialize in the autonomic system), but you may find one at Duke, where you get your other care.  There are numerous things involved in a full autonomic battery of testing.

The stocking are to increase BP...by means of compression (as blood tends to pool in the feet of those with orthostatic hypotension).  You indicated you don't have a problem with your BP.  You should not wear them unless you have been Dx with this condition.  If your BP is normal (or even low from orthostatic hypotension) and you lay down with these stockings, then you may cause an unsafe increase in BP (called supine hypertension).  This is also common in those with orthostatic hypotension or autonomic failure.  So please talk to your doctor before using the stockings...and ask for an autonomic specialist to help pin-point your condition, so you know what part of your autonomic system is causing the collapse (BP, HR, vagus nerve etc).  Also, there are general stockings, but those with this condition are "fitted" for stockings with specific/proper pressures...so you want to have these prescribed by a doctor.

Hope this helps.