Orthostatic Hypotension Chiari 0

[kkrylee]

I wanted to start a new topic in hopes of getting back to my original concern.

17 yr old with Orthostatic Hypotension, NOT POTS. Her heart rate does not shoot up, but blood pressure fluctuates throughout the day dramatically causing all the symptoms of POTS plus more. It never goes over 117/70 but frequently drops as low as 80/44 and occassionally 80/28. But pulse stays normal during this. Does anyone else have severe OH but not POTS?

Everything that I read is either POTS or states that only the elderly have OH. She is 17 and tilt table test shows OH. All heart tests were fine. All blood work fine. MRI & MRA fine (except large pitiutary said to be normal for teen). Spinal tap fine. And, although she has some symptoms of other things such as Ehlers Danlow, etc, she does not fit any profile that I can find. She has been suffering for 8 1/2 mos with no relief or break from the symptoms. Has seen too many specialists to count with no answers except OH.

Also, if anyone has been diagnosed with Chiari 0, can you share you MIR with me? Her symptoms point to Chiari but if she has it, it would be Chiari 0 because her tonsils do not go below the foreman. However, her brain does look very crowded. I can be reached at kkrylee3 at yahoo.com

Symptoms:

constant transient vision loss

constant nausea

constant headache pressure at base of skull

dizziness

Some hypermobility, especially in hands

tingling, numbness in head, scalp, face

occasional burning in head and face

possible absence seizures

heightened sense of smell

some joint pain

occassional temperature fluctuations

breasts adenomas

mild spina biffida occulta

left vertebral artery ends in PICA

excessive burping

[ajw4790]

Hi,

I am not familiar with Chiari 0 really, so I don't have insight there. But, even teenagers can have just OH and not have POTS. Just because they are a teen does not mean it is automatically POTS.

I hope that you are able to find more answers soon!

[Sunfish]

hello -

i don't have POTS but rather a form of autonomic failure which includes, but is not limited to, OH. i'm 28 and am not a "typical" situation, but your daughter's situation - OH without POTS - is actually not all that unusual. there are a good number of people with orthostatic hypotension, sometimes receiving the diagnosis of NCS (neurocardiogenic syncope) or NMH (neurally mediated hypotension) who do not fit the diagnostic criteria for POTS. while POTS can certainly seem to overtake the discussions on this forum, there are a significant number of members with NCS/ NMH as well...either as a singular diagnosis or in combination with a POTS diagnosis. there are some people with "only" a more general diagnosis of "dysautonomia" or "autonomic dysfunction" rather than something more specific, many who have "OH" (either alone or in combination with other diagnoses), and a handful of us - though definitely much more in the minority - with other diagnoses (i.e. autonomic failure). while OH can certainly be seen in a subset of the elderly, any "information" you have come across stating that OH is something seen only in the elderly is definitely NOT accurate.

re: chiari (of any type), there are a few people on the forum who have explored this to varying degrees as a possible component of their diagnosis. a search for chiari would give you some more info as well as links to forums where chiari is the primary topic of discussion.

i was first diagnosed with NCS at 17 myself, though did have some problems prior that were only made sense of after the fact (GI issues, dizziness, numbness/ tingling, fatigue, etc). the teen years are in fact a very common time for various forms of dysautonomia to rear their ugly head, though i realize that doesn't make dealing with any of it any easier at the time. and while it may be hard to believe, there is a lot more information & help now than there was eleven years ago (when i was 17). there's honestly no way at this point to know for certain where your daughter will be health-wise a year from now, 5 years from now, etc, but statistically there's a great chance that - to some degree - she'll be able to find some degree of relief from her symptoms. i know it's easier said than done, but the key is to find a knowledgeable doc who is both willing & able to get her to the best place she can be through a combination of lifestyle & medical interventions.

i know you said that she's seen numerous specialists already, but has she seen anyone who specializes specifically in dysautonomia? they don't have "magic fixes" nor all of the answers, but can make a HUGE difference in getting the best treatment possible. there is a physician list on the site and/or if you let me know what part of the country you're in and/or how far you are able & willing to travel i'll share any thoughts/ info that i have.

i'm sure it must be extremely tough to be walking through this with your daughter, but she's lucky to have you seeking out information & support in the way that you are...many people don't have this type of family support. i hope you're hanging in there as best as you can be in the midst of a tough situation, including taking care of yourself.

hope this helps,

melissa

[kkrylee]

Thank you Melissa,

I am very grateful for the internet. The doctors give no info at all. If blood is not seen shooting out of a vein or a bone is sticking out of your leg, you must be depressed. One doctor at Children's hospital, after hearing that one of her symptoms was constant nausea, immediately decided that she was a teen so she must be pregnant. If that had been the case, I would be a grandmother, because it has been 9 months since these symptoms became severe. This 17 yr old has not had a real date yet or a boyfriend.

Without others to share with, it would really be frightening. We are in Louisiana just outside of N.O. I was not able to find any doctor for dysautonomia anywhere near us. I will do anything for my daughter's health but we can't get to a point that justifies what type of specialists we really need. She still could have Chiari 0, it could still be a pituitary tumor, she also has some symptoms of Ehlers Danlos, and we know she has the OH. She had a positive Babinski reponse once but did not have it the next visit when the neuro tested. Her pituitary is a large globular shape that Endo says normal for teen but MD Anderson specialist said could be tumor but MRI's not definitive. He suggested a wait and see if it grows. (I sent him her films and he was good enough to review them).

My husband is and has been disabled for 15 years and I am a Realtor. I think that if anyone listens to the news they know that our financial situation is quite desparate. So without feeling confident that traveling would give us the answer, I'm hesitant.

We have seen so many specialists at Children's teaching hospitals plus others and we walk in with high hopes that this doctor will get the answer right. They spend 5 minutes with us and forward us to someone else. Obviously some have ordered testing, but if there is not a major red flag from the test, they send us on to someone else. We have an appointment with a new Pediatric Neurologist coming up and I just don't know if we should even go. It is a $60 copay and a 1 hour drive and if this visit is the same as the rest, I am going to want to scream at someone.

I know that you can hear my frustration and that you understand. I am grateful for this contact that allows us to share in our frustration and worries.

Thank you