Hello..

I am a 38 year-old with tachycardia,orthostatic bp (POTS maybe), syncope (last time I face planted and broke my nose),sudden high bp (my norm for over 20 years has been a nice low 100/70 and is now suddenly closer to 150/100) , neurogenic bladder, neuropathy in both my arms and legs, electrolyte imbalance, excessive sweating, headaches, blurry vision, nystagmus, weakness and fatigue.

My cardiologist believes I have Autonomic Dysfunction. I am undergoing a stress test tomorrow and have already had an MRI. I have had the neuropathy for a few years but it suddenly became much worse and is now up to mid-thigh on my legs and mid-upper arms. Several of my symptoms have been blamed on a back injury I had back in '07 so I have been caught off guard.

What is the prognosis for this condition and what can I do to treat my symptoms more effectively?

Thanks so much...

Hi and welcome. Sorry to hear that you may have this chronic illness. It's no easy feat. Are you going to get a table tilt test done?

Depending on what you are diagnosed with there are different treatments. You will find all kinds of people with different variations of autonomic disorders.

I have dysautonomia and neurocardiogenic syncope (NCS). I do tolerance excersizes and I am on a beta blocker.

We are all here to help you so don't be afraid to ask anything.

Hi Chris,

Yes, I think so. My cardiologist mentioned doing one after the stress test. He already has me on 50 mg/day of Toprol XL and may be changing the dose/medication based upon my results when I see him tomorrow. I am hoping to get more answers instead of additional questions in the morning.

Thanks for your reply..
Heather

Ah yes I forget that in the health system here there is time in between tests.

You see the doctors here paid no heed to my concerns. My dad took me to Mexico City to see a cardiologist there. I had an EKG, treadmill stress test, blood work and the table tilt test all in one day. They did there in one day what would have taken me years here.

my cardiologist and neurolgist recently agreeded that i live with neurocardic syncopy. my most recent episode hospitalized, came with reminders: keep hydrated preferrly water, when you sense your systoms sit down, body in horizontal position with feet higher than the rest of your body is ideal. i presently wear compression socks. the TTT was toleable for 29 minutes, i was told the examination would last 45 minutes.

hi,
After my 4th seizure of flopping like a fish, a new doctor has said I have DYS. Not sure which kind yet but better than people saying it is anxiety attacks or sugar attackes. Then have anemia so on iron pills.
She told me to take Prozac to calm my nervous system and walk everday to exercise my heart.This is the only way to beat this.
Prozac is making me not wanting to do anything. I can't sleep at nite so I take Advil PM. My mind will not stop racing.I am extremely tired and get alot of headaches. I have no appetite to eat yet is the wrong way to lose weight.
IF this is just the begining of this road I need some help to get better quickly.
Any suggestions are appreciated.
Thanks

Hi Heather. I am a 41-year-old who was recently diagnosed with autonomic dysfunction. Fortunately, I was whisked into a neurologist straight away thanks to a good GP who worked some magic, and got in for autonomic testing very quickly. Had an abnormal tilt table test and abnormal sweat test. I, too, have muscle weakness and pins and needles in arms, legs, hands, and dizziness, GI problems. I went from exercising 3 - 4 times per week, working full-time with 3 young children, to barely being able to walk around or do anything repetitive with any muscle group. My neurologist is supposed to be one of the best in this area (Alexandru Barboi at Froedtert in Milwaukee, WI) and he has told me that in his experience autonomic dysfunction is a chronic condition and one has to be very strict about alternating periods of activity with periods of rest. In his words "you absolutely can't go beyond that."

I'm also being put on blood pressure meds due to low blood pressure, but I have also recently had episodes where it shoots up high (150/90) and stays there for several hours. I am hoping the medication helps - has your cardiologist suggested that for you?

It's very shocking when your life is suddenly turned upside down. I am an elementary music teacher and I've had the summer off to take it easy when I need to, but I am very worried about what will happen when I go back in August.

Do you have plans to see a neurologist?

Good luck to you - stay in touch!

Heidi

Hello,
My name is Sandy & I live in Maryland. I was reading some of the information others have written in about Autonomic Dysfunction & was amazed there are others like me. My crazy symptoms have been going on for years. It's just taken until very recently for ME to find some of the last pieces to this very large. complex puzzle. Since 1995, or really much earlier, I havae been living through this fog of seperate "mini" disorders that never made much sense. chronic, coming and going problems that have tried to do me in - slowly decreasing vision, swallowing issues, horrible weird sweating all over my head with ice cold arms (summer or winter), radical high blood pressure cycles 205/156 with horrible headaches to my B/P plugging to 60/28 where I pass out. I have suffered from gastro issues (had a blockage in my small intestine losing 7"), due to unreal constipation, kidney failure out of no where in 2002, 7 UTI & kidney woes in a row earlier this year, requirrring a 6 day hosp. stay. I found a good Urologist who found I was retaining large amounts of urine, even though I almost never have any urge to urinate except 1-2 times a day, eve if I drink an ocean. I recently had a serious foot injury after getting up from bed, blacking out & falling on my foot. This has led to Reflex Sympathetic Dystrophy in my foot and ankle which has & still has caused such horrible pain, I felt like chopping my foot off. Well, I guess that's enough of my woes for now. The part of this I hate worse is when my BPj suddenly drops. It makes me feel so ill, with headach, sizziness, this odd sensation in my head, followed by a roaring sound in my ears, seeing black spots, then I losr my vision totally and black out. I hope and pray someone out there can relate. It's so hard being out there with this. My local hospital thinks I'm a cooke and warn all the staff of this as soon aas I walk in the door. A couple months ago, this staff sent me home with a B? of 70/30 & said I was making a mountain out of mole hill. I'm seeing a new Neurologist at George Washington University Hospital in Wasahinton, D.C. who tells me he hopes to get to the bottom of this. Yeah!! I would feel so blessed. Sandy

Hi Sandy...

Yes, we can relate. Since our symptoms can and do vary, if I have not experienced one of your symptoms, then someone else has.

I hope your Doc turns out to be a good one. If not look for one on the list that is on this site. If a Doc has not studied Dysautonomia, (s)he may not understand what is happening.

Hang around, read, and ask questions if you need to. The 'Dysautonomia Talk' Forum has more traffic and more info if you want to stop by there.

Welcome!

Hi Rosie,

Thanks so much for writing. Even though I have known of these weird sysmptoms for a long time, I always keep hoping they will just fly away - LOL Back last May, I went to see an area Neurologist. I had had totally numb toes (like they are as dead as a rock). Every doc I went to always asked if I had Diabetes? After I replied "no", they simply shrugged their shoulders. This Neurologist who did all of my test, except my Tilt Table (done somewhere else), after watching me walk dozens of time, shocked me, japped me with the spear, poured first very warm then cold water into ears, took gobs of blood & told me to come back in 6 weeks. Well, I anxiously went for my appt. with my hubby Rick. Dr. Dr. Cardboard & his PA spent about 10 min. with us, handing me my diagnoses on a sticky note! We couldn't believe it. The only thing he said was that "it's progressive". What in the heck does that mean? I told him our middle son Jeff, age 27 (we have 3 boys) also has had very simmilars since birth, except Jeffstooped breathing every time he went to sleep. He spent 18 months in Children's Hosp. in D.C. before coming home with his "mini intensive care" in tote. We were told Jeff would never live to see his 2nd birthday. They were wrong and we're so happy to have our son, who graduated from Univ. of MD. in 2005 & is on staff there. His symptoms have gotten much better. He now breathes on his own (barely) has a cardiac pacemaker & never misses a beat. I'm puzzled that my real threatening sympoms really didn't appear gradually until my mid 30's. I'm 53 now. This new Neurologist seems to be on my page & is very interested in finding out more about Jeff. Oh yeah, I have as much problems with very high blood pressure (186/126) right now as I do with BP's of 60/30. I can't get any area doctor to deal with this. All they do is pawn it off to another doctor who pawns it off to yet another. I'm so frustrated! Any suggestions? Thanks Sandy

Sandy...As you can see from my signature line, I advocate Apnea testing. If you and your son have not been tested recently, please have that done. It seems many of us have sleep disorders. Treating any underlying disorder is important.

There is a list of physicians at the following link. I see that there is one in Maryland, but I don't know anything about him. If you decide you might like to see him, you can ask about him on the main forum. We do try to let each other know if we have had a good experience with a Doc. And someone from your area may have another suggestion.

http://www.ndrf.org/physicia.htm

Next is a link to my favorite article. Have a look at the chart there. The article gives an overview of the various Dysautonomias. It may not help since you don't know which you have. If it were me, I would find out.

http://circ.ahajournals.org/cgi/content/full/111/22/2997?etoc#R2-165649

I'm off for tonight. Will check back tomorrow. I am happy that the Docs were wrong about your son.

Hi Heidianne,

Sorry it took me so long to reply. I have been having a bit of a hard time of late and the Tilt Table test knocked me out on my butt for a few days.

Yes, I see a neurologist and he is fabulous. He had thought that I had some ANS stuff going on too so he was thrilled when I was sent to a cardio after falling and breaking my nose. He has been extremely supportive and he is helping my cardio put stuff together. I had a positive abnormal tilt too (and if I never have another it will be too soon) and haven't had a sweat test but have demonstrated what is happening sweatwise several times (and definitely not purposefully) Ick! After seeing my neuro last week, I have learned that my neuropathy is spreading and is now above my mid thigh and is up to almost my shoulders in my arms. The weakness and fatigue is very debilitating, especially in the horrible summer heat. Thankfully, my son is older and can be quite independent. I can't even imagine going through this with a young child not to mention 3. You have my thoughts and prayers -- I am sure you are very overwhelmed between the kids and your symptoms.

My neuro and cardiologist said the same thing as yours so I am finding that I need to rest first and then do a bit of things here and there. The BP meds are at 50mg a day right now, but I think they will be increased if not changed completely, because my bp & heartrate are still swinging pretty widely back and forth. But thankfully, it hasn't hit that super high point that it was before so at least that has stopped.

It is definitely shocking -- not to mention surprising at how quickly everything can change.
I can't believe how little I can do right now --it is sooo frustrating. Thankfully my husband is wonderful and extremely supportive. My son has done well too for a teen.. he has been a godsend with the whole driving thing. I don't know what I would do if they weren't this way -- it would definitely been 10 times harder to deal with.

I am off from doc visits this week, but I hit the ENT and the cardiologist next week. Hopefully the heat will break soon too.. because I definitely can't handle a few months of this oppressive heat.

Take care..
Heather

Hi Sandy,

You are near my neck of the woods. I love my cardiologist.. he is fabulous and I truly think that I too would still be dealing with the weird little syndromes thing too. My docs have been too quick to attribute many of my symptoms to my lupus and sjogrens even if they really came out of nowhere and then of course, some of the symptoms were attributed to the new disorders. Egads -- what a vicious circle with absolutely no end in sight. Now that I have the new dysautonomia diagnosis so much is falling into place and making a 100% more sense (including my sudden neurogenic bladder, metabolic acidosis, severe headaches, wooziness, anemia, tachycardia, variating bp after 20+ years of 100/70 and more)

I am so sorry to hear about your injury and RSD. I used to work in neurology and know how horrible that can be in terms of pain and such.
I know what you mean -- I have the same bizarre symptoms. I kept thinking it was some bizarre form of hypoglycemia when it would happen during errands, etc. The tilt table test made them happen a bit slower so I could recognize and see how they progress. I had the tunneling of vision as well and then things got darker and more blurry before I passed out. It was such a horrible feeling. I think that if I hadn't just passed out and broke my nose, I would still not know. So it in a lot of ways I am so grateful that it happened -- now I can start to be more proactive.

Who are you seeing at GW? I know that there used to be a great guy at JH but I think he left. Mine is pretty great but he is a bit of a journey for you since he is out in Fairfax.

Please feel free to write me anytime. I agree it is nice to know you aren't alone. Take care and rest in this heat.

Heather

Rosie is sooo right! Sleep disorders definitely seem to happen a lot in this group. I just had my sleep study done last week and am awaiting my results to see if apnea is the issue or if it is just the level of deep sleep obtained. My doc was worried when I told him how little I sleep (some nights I don't) and thought I may have apnea since my hubby says I wake often choking so he ordered one right away. I also have horrible insomnia and sleep very restlessly when I do sleep. I have tried all kinds of things (meds, no caffeine, etc.) with no help so now I am trying to right my "bioclock" by turning my body clock around. We will see how that goes. My dad and uncles all have apnea so the cpap is a constant feature at their houses. Hopefully, it won't become one at mine (fingers and toes crossed!)
Your son's problem sounds like it definitely could be related. My neuro told me that the neuropathy from ANS (which I have already in my limbs and back) can affect the blood vessels and electrical regulation of the heart -- he thinks that is why mine isn't responding to the meds very well. Have you and your son both had a stress test to rule out damage?
The neuropathy may be what you have going on and your son as well since your feet are so bad .

Rosie -- Thank you so much for that article link. It is sooo hard to find good information that goes more in-depth. We are all in this together and it is nice to share resources.

Hope all of us find the help and resources we need...
Heather