I was diagnosed today with Autonomic Neuropathy and POTS Syndrome. They told me it was caused by Sjogren's. Anyone else have this? How are you treating it?
Hi Sugarbugar,
Sorry to hear that you have been diagnosed with this complaint.
I do have symptoms of Autonomic Dysfunction, and there are some here that have it badly.
I would say that having Sjogrens brings a bigger risk of A D, (POTS ) Ive not heard of this ?
If you go back on the threads you will find quite a lot has been discussed about AD.
I have never been diagnosed but sure do have symptoms of it!
I'm in the UK where we seem to be a little behind in the treatment of SS,
hence the lack of interest when other symptoms appear.
I'm sure others will reply to you, probably with more knowledge than I of this.
Good Luck. Dolly
Sugarburgar,
I have some symptoms of autonomic dysfunction but not as severe as some people on the forum. What are your symptoms and how did your physician decide to treat you?
Anna
There are many aspects of AN...heart rate and BP problems, temp regulation issues, balance, gastroparesis, vascular spasms, etc.
AN is usually treated with medicine; symptomatically based upon the problem.
What tests did they performs? If they found something indicating AN, then one would think they would have offered treatment if it was significant.
Bugar,
Autonomic disturbances caused by Sjogren's has cause problems with sinus tachycardia, arrhythmia and intestinal problems.
Yes, and I don't know which came first, the chicken or the egg.
@Dolly~ Thanks for responding. POTS is Post Orthostatic Tachycardia Syndrome. It's a form of dysautonomia. They found it starting with an event monitor to watch my heart rate and heart beat. Then I had a tilt table test done to confirm it.
@Anna~My first symptoms were passing out for no reason. Then I started having spells of tachycardia. It was actually difficult to diagnose at first because a different heart condition that lead us down the wrong road at first. So, I have problems with low blood pressure which I am on medication to try and keep it up, then I have Heart Rate issues. My heart rate has been as low as 38 beats a minute and you feel like a dead zombie and it's been as high as 265 which threw me into VTACH which is where your heart quivers and no longer beats. I also have irregular beats where it can skip beats and add beats. I'm on medication to help this as well. It can make you very weak and tired, it can make you feel like you drank 50 cups of coffee. It affects my lungs and stomach as well and that is what was confirmed these past two days. So, now they're thinking immune suppressing drugs and other drugs to treat the symptoms I am having. This isn't to scare you, I have no idea what other's symptoms are and if they have it as bad as I do. I just know it's difficult to treat and was hoping for some answers here. I sure hope you get better soon and that this isn't your problem. I know it's been very difficult for me but I am hoping with all the medications, we might start to get it all under control. :)
@Anita~One would think right that if it was significant treatments would be discussed and they were but I was curious what others are doing, because I was told today it's extremely difficult to treat and affects all involuntary movement of the body. I have had for just the dysautonomia testing: Event Monitors, Water Deprivation Test, Tilt Table, A Swallowing test and an Endoscopy scheduled; EMG, Heart Variable testing and a provocation and muscle strength test of my lungs. I will not know how they plan on treating this until I get some blood work bad. But as of right now I am on Midodrine, Florinef, Inderal and they discussed today immune suppressing drugs.
I am hoping those with experience might be able to help me with dealing with this disease and what has worked best for them. I understand and know all individuals are different but am hoping to learn daily things people do to help minimize the effects.
Thanks everyone for responding, I am hoping someone out there will be a virtual arm around me with this disease and can help me understand it more and it's relation to Sjogren's.
I have small nerve sensory neuropathy. Just one of the many issues I have in addition to Sjogrens. Won't list them all cuz it makes me feel down and I'm an upbeat person. My last Neuro doctor had me on Gabapentin and a bunch of other things but my new Neuro is looking at switching me to something else that is to also help with the cognative issues where gabapentin increase the cognitive problems. Wish I knew that before I started it. I can barely work cuz I can't remember squat and what used to take me 10 minutes to accomplish now takes me 4 hours! My husband and I joke that being married to me is like the movie "50 First Dates". You gotta laugh about it! :D
Sugar,
You are absolutely right about it being very difficult to treat. Your original question didn't tell much, so I was afraid to bombard you with info not knowing what had been done and what you had been told.
If you look at my meds, you'll see some of the same meds your were prescribed. It is basically treating each malfunction, whether it be the heart rate, BP, etc. Treating the autonomic system as a whole is even more difficult. I am in need of this myself as my (widespread) AN is severe and now includes significant coronary artery spasms.
I have tried high dose steroids, but it's not a consistent fix and I only got minimal benefit for short periods of time. I think I did better while on IVIG (which is also used for peripheral neuropathy), but after 11 years I had a severe reaction causing meningitis, so no more IVIG for me.
Sounds like you had a full battery of AN testing...GOOD. I too have some wild heart rates, but after EPS studies, and two years of playing with meds, a pacemaker was finally required and placed in 2004. Not all patients require this, (actually very few). Hopefully they will find the right combination of meds soon.
Good luck. If you have any questions, feel free to ask.
I am on ivig.
Most meds I take for one problem, end up causing some new problem.
I have numerous arrhythmias, which makes things tough to treat.
There must be some yet unfound autoantibody that gives a +ANA, yet negative ENA, and attacks small fibers.
BTW, I had this BEFORE my ANA became +. The problems grew worse with perimenopause and even worse with menopause.
My mom and g-mother had these issues, but mine have come on earlier...actually my mom's came on faster than my g-mom's. In genetics that is called anticipation. On the other hand, the baby boomer generation is the first to be immunized at an early age....first to be exposed lifelong, to plastics and other hormone mimicry. It is very hard to say what is causing this....more frequent identification or increased occurance.
All one can do is try to treat each systemic problem and hope it doesn't cause some new issue.
Thanks Anita and Inga for your responses. I guess there is no quick fix to this disease! Was kinda hoping there was something other than meds to help. They have discussed a pacemaker already but we're still holding off for now. Sorry to hear of your spasms, that doesn't sound good at all.
Is this disease progressive? I forgot to ask the Neuro that yesterday. Thanks again for all the info.
Inga I forgot to respond about your g-ma and mom having it too. So, maybe this is genetic? I have two little kids and both represent AI disease already. My son at 3 years old went through a host of testing. He had High CRP's, he had a speckled ANA and high lymphocytes. He also had an abnormal bone marrow. However, they just told me this meant he had inflammation in his body and that was it. At the time I had no idea what AI diseases etc. were. He's better now but both of them represent symptoms when they're sick. They get rashes, mouth sores, and severe leg pain. However, each one of them gets pain in only one leg. My son is his right and my daughter it's her left.
I wonder if I should have them re-tested? I really don't want them ending up like me. Would knowing even help or just cause more worry? WHO KNOWS!!
I originally had severe symptoms of dysautonomia, which lead my Rheumy to consider POTS as a possible reason for some of my problems. I was given a prescription for nadolol to treat the migraines I was getting as well as stabilize my blood pressure. I had an echo on my heart and it was found to be abnormal, possibly Atrial Septal Defect, but first I was administered a tilt table test which showed no signs of POTS. Next step for me is heart cathode to check the oxygen saturation levels at the site of the possible defect. I personally think it may be valve damage from autoimmune but it'll take some time to tell for sure.
Anyways to answer your question, my first step to treat my dysautonomic symptoms was to take alpha lipoic acid (in my case 200 mg daily). This one supplement literally eliminated most of my major symptoms (temperature regulation problems, constant nausea, motion sickness, hyperosmia). The nadolol allows me to be able to sit for long periods of time, (before I would become dizzy and nauseated being seated for too long and would have to literally stand for hours at a time) and has treated my migraines well. Some helpful tips my doctors gave me initially to help alleviate POTS symptoms in general was to first try eating salty foods, as the salt increases the blood volume which makes the transition from different positions less of a shock to the system (with moderation of course). Another was to try exercising on a rowing type machine for awhile then stand and walk on a treadmill right after for some time.
Hope you feel better soon!
edit: oh yeah if you want some reading material here's one that was posted in this forum a while back which may be useful to you http://www.ildcare.eu/Downloads/proefschriften/proefschriften_2005/Hoitsma_-_2005_-_Chapter_03.pdf (http://www.ildcare.eu/Downloads/proefschriften/proefschriften_2005/Hoitsma_-_2005_-_Chapter_03.pdf)
@Hypermobius~ I am so sorry to hear all you're going through! I hope they figure it out for you soon. It's not fun having problems with your heart and fainting etc. You have problems sitting down huh? Mine is standing up, it's the opposite; however I have fainted sitting down before too!
Alpha Lipoic Acid huh? I am definitely going to look into that one. I'm glad to hear it helps you I hope it's something I can take and I hope I find success with it as well. You hang in there, and I hope you get a light at the end of your tunnel soon.
My temperature regulator appears to be broken. If I am cold, I stay cold a long time. If I get too hot, I sweat profusely for a long time... It's like my temperature guage is broken.
Kamie: RE: Exercise. I have found that if I go past my point I pay for it dearly later that day or even the next too... I have found if I don't go past it, then I am okay and can do things in my new "regular" fashion. If I push it too far, I am exhausted and in pain for quite some time. Not worth it but I sometimes just have to do it when life dictates... *sigh*
I am sorry you are dealing with this Sugar, I hope that your doctors are able to assist you as best possible.
-Y