Can anyone tell me if this is a symptom of Chiari1?
No....It's a symptom of a Chiari related disorder called Post Orthostatic Tachycardia-POTS a condition of dysautonomia. I was diagnosed in December and we have a Chiari and POTS group you can join. I have added some links about POTS.
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm
http://www.dinet.org/pots_an_overview.htm
http://www.medicinenet.com/pot_syndrome/article.htm
http://podcasts.mayoclinic.org/2008/04/23/postural-orthostatic-tachycardia-syndrome-pots/
Dysautomia-
http://en.wikipedia.org/wiki/Dysautonomia
http://www.medicalnewstoday.com/releases/76785.php
http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm
http://www.familialdysautonomia.org/
Tracy Z.
I’m going to have to disagree with Tracy on this one. My neurosurgeon said that it is in fact a very common symptom of Chiari type 1, but only when exerting cranial pressure increasing type activities (I.e. sneezing, climbing stairs, having a bowel movement, etc…) I was having near syncope episodes prior to surgery… My neurosurgeon says that this is one way people discover/get diagnoised with Chiari. They keep passing out during cranial unceasing activities and cannot figure out why, show up to the ER 5-6 times… Pass table tests, stress tests etc… And then finally end up in a neurosurgeon’s office discussing Chiari. I consulted four NS before finding one who was rebound for his expertise with Chiari. All of them discussed pre-syncope and syncope episodes as a symptom of Chiari. Furthmore, I had extensive blood pressure testing moving from the supine position to the upright position with no change in blood pressure/heart rate/ oxygen saturation (not consistent woth POTS) but was still experiencing pre-syncope episodes.
I would not discredit Tracy or take my feedback at face value. I would discuss it with your respective NS. Also, have the appropriate testing done to rule out POTS. All said and done, syncope is no fun and really scary, so I wish you the best of luck!!! Keep your head up and don’t let your Chiari get the best of you!
It can be. I also have POTS as well, but my Pedi (Harrington), Cardiologist, (Child Heart) and current NS (MGHfC), as well as the Neuro or NS (Im not sure what he was. [It was a long foggy 3 weeks inpatient]) thatfirst saw me after Dx (Harrington), and the first NS & his PA (UMASS) [saw & had exam w/ PA, then an eon later, i met the NS; so the were seperate for all but the last 10min of appt)…they have all said that it can be. In the guide from ASAP that was put together by Dr. Heiss and Dr. Oró, it also stated it as a symptom. So, while it can be a symptom of Chiari, it doesn’t nesisarily mean that Chiari is the root cause of pre-syncope and syncopal episodes for everyone.
Both of my boys have POTS, and only the 13 year old has Chiari. My older son (15)was dx'd first. The neurologist said he was not surprised that the younger one had it because it is common in people with Chiari, and then said, "but we don't know why." The older has a more severe case than the younger too. Because they have increased heart rates it is POTS and not just Neurogenic Syncope.
My ns said it is a symptom. I was passing out,at the very least, once a day prior to surgery. After surgery I didn’t pass out for a few months. Now I am 7 months post op and have begun passing out. Or at least getting super dizzy, tunnel vision and almost passing out a few times a week.
I had pre-syncope for 2 years, but I could usually pull myself out of going full syncope by moving my head around. Even though my neurosurgeon wasn't convinced that the pre-syncope was caused by Chiari, it was so debilitating that it was the main reason I had the Chiari surgery. However, after surgery, I still had the pre-syncope symptoms when I went back to work (sitting at a desk for 8 hours a day). I was able to relieve the symptoms by laying down. Muscle relaxers and high doses of ibuprofen also helped. 5 months after Chiari surgery I decided to try an SNRI (anti-depressant that boosts serotonin and norepinephrine). Within a few days of beginning the medication my pre-syncope episodes went away. I've been on the medication for almost a year now and I have only had a few episodes of pre-syncope. Usually they occur when I get on an elevator. I don't like being labeled as having major depressive disorder when I wasn't depressed, but I can live with it since the medication has relieved my pre-syncope symptoms. Unfortunately, it's also relieved my slow digestive symptoms also, so I've gained almost 20 lbs and I can't get the weight back off :( I have found 3 medical studies done on patients who had syncope symptoms that went away or were greatly reduced when given doses of NRI (increases norepinephrine), so I assume it's the extremely low amount of norepinephrine that causes the syncope symptoms that I personally was experiencing?
I had decompression surgery in November and have never had any syncope issues but my daughters who have never had MRI's to check for a Chiari both have issues with passing out. My oldest has a dx of vasovagal syncope and my youngest has issues with passing out but we have never got a really good dx for her issues. Since my decompression I have/had wondered if they both had a Chiari due to the syncope issues.
Depends on what your symptoms are before you pass out. but then again I'm not fully sure on that either.
I have been known to out of the blue go unconscious not remember anything that happened before I went out (My sis says one time I was acting crazy saying things that didn't make any since 5 min later I'm on the floor then I come too like 10 min later no memory of what I was doing before) but normally I have severe pain and then faint.
My oldest has learned the symptoms before she passes out and what to do but we spent 3-4 times in the ER before we had the tilt table and the tilt table took less than 10 min. We have a cardio following her at this time and when all this was happening we thought about it being Chiari related but didn't give much thought (educated more now). Both my girls from early on have had migraines and were treated for it. My youngest started passing out right after her boosters to start school then more came on in medical settings even with a dx of benign reticular epilepsy and when she didn't out grow it we took her to another neuro who said it wasn't epilepsy but severe panic attacks. She was hospitalized for passing out and turning blue that was when we got the first dx but it was not in a medical setting it was at school in K class during role call. With my oldest we thought maybe it was a hormone issue that brought them on but she continues to have issues. We have increase her salt, water intake, she works hard and goes to college full time and battles her weight (like me no matter what she does can't lose weight), ringing in her ears and the headaches.
Family - not sure about 1,2 or 3rd cousins but I have only found 1 distant cousin on my fathers side of the family who has had decompression surgery twice in the last 5 years. To my knowledge there has not been any migraine or vasovagal syncope issues on my mothers side of the family.
Thank You Abby
Working on that now :)
Abby said:
Lori,
I have vasoval syncope too. I almost and have passed out. When I had my tilt table test, the cardiologist who did my test told us that my chiari had damaged the vagus nerve. It is hard to try to pinpoint if it is from chiari or other issues. I do know that Chiari can run in families, all though it has not been proven, but studies are ongoing now, and dysautonomia can run in families too. You may benefit from having both girls being checked out. Neither of my girls will have the tests done, since they are grown and out of the house. My advice, before they get grown, have them checked if you have good insurance that will pay for the tests.
I was feeling really good before I passed out. I was returning home after a visit with my mom, a two hour drive. One second I'm planing what house work I will do when I get there the next I'm coming to with my car headed for the ditch. Naturally I over-corrected and spun around praying I wouldn't roll over. When the car stopped I was headed in the opposite direction. Thank God there were no other cars on the road so I didn't injure anyone else or myself. After my heart stopped pounding I very calmly turned around and drove the last ten miles home. I didn't know what to do so I didn't do anything for a few weeks and that includes driving. I knew there would be multiple tests but I thought it would be with the Neurologist and that had gotten me no where the last time. When I finally opened up about it I only talked with my daughter who has many years experience as an RN. She told me to expect testing with my Cardiologist to begin first and so it did. Everything except the tilt table test. I'm thinking now that was a mistake. His office failed to schedule it and every other test said I was fine so... why bother. I didn't drive for six months but I'm cleared to drive now. I haven't driven long distances but that's because my husband gets so stressed about it.
MomOfThree said:
Depends on what your symptoms are before you pass out. but then again I'm not fully sure on that either.
I have been known to out of the blue go unconscious not remember anything that happened before I went out (My sis says one time I was acting crazy saying things that didn't make any since 5 min later I'm on the floor then I come too like 10 min later no memory of what I was doing before) but normally I have severe pain and then faint.
What should I expect to learn from the tilt test?
Beeba said:
Bonnie - you need a tilt test. Insist on it.