Secondary Dysautonomia?

[Michelle F.]

I had a lengthy discussion with a nurse friend of mine who also has been diagnosed with dysautonomia. He is apparently very informed and I learned a lot from talking with him yesterday. I am at the stage where I have a neuro who has told me I have dysautonomia, but little more than that. I don't think he knows much more than that and has been observing me for 1 1/2 years or so, while he tries to make sense of my symptoms.

Here's my situation. In June, 2007, an MRI/MRA of my head revealed that one of my two vertebral arteries is enlarged and that the other one ends in the PICA. This means that I have only one of the two main vertebral arteries that supply blood to my head. The one I do have has enlarged to try to compensate and I have probably been like this since birth. I have thought this complicates the dysautonomia I have experienced since I am positive blood/oxygen to my head is often compromised. However, my nurse friend, said that based on what I am telling him about my experiences, he believes that the dysauto is secondary to the lack of one of my vertebral arteries. I think he may be right!

He said it sounds like my vertebral artery may be spasming. I do have spondylolosthesis in the upper back/neck. This is a condition where the bones slip and slide. I have lax ligaments throughout my body, even resulting in chondromalacia patellae (bone on bone in the knees). I have had a "neck incident" where a disk ruptured, without real cause and I was in traction for six weeks to heal it. My neck is weak in muscle and bone. I also know that circulation to my inner ears is compromised. I have been dx'd with Meniere's, but the specialist said it is secondary to something else. I have always thought my inner ear problems are secondary to something being wrong in my neck.

Does any of this sound familiar to anyone here. What kind of neuro or other doctor would know enough about this? Where? Any help or information anyone can offer is appreciated!

Thank you!

Michelle F.

[morgan617]

HI Michelle, I am in vestibular rehab right now for bppv, and she asked if I had had angiography to see if I had vertebral flow problems too. However, she didn't know what you do for it. I am going to follow up with my ent and see what he says. I have thought for awhile that something's getting "pinched" when I turn certain ways. I have unequivical meneires bilaterally, but I still think there's something more going on.

Who did the MRI and what did they say about it? I would guess this would be more of a neuro problem, but if your artery just ends, as opposed to getting impinged, the treatments would have to be very different.

By the way, I have been on this site forever, but have been off due to vertigo stuff, and don't know virtually anyone here now, so welcome. And I'm sorry no one answered your post, I can't help you, but I certainly get what you are saying. My guess would be neuro, or to ask the doc that ordered the MRI who could best help you. Good luck! morgan

[mkoven]

not sure if this is relevant, but I have what are called vertebrobasilar migraines-- which I guess is a constriction and then overdilation of those vessels? It's one type of complicated migraine that is often linked to autonomic problems.

I think the actual arteries are okay, though I"ve been told my right vertebral artery is small.

[MightyMouse]

Michelle, have you looked into Ehlers-Danlos? It can be associated with the hypermobilities and laxities you described. You and I also share the ruptured disc issue, although I was 10 when mine happened, pre MRI era, so was never diagnosed until my surgery to fuse the joint--there was no disc there, just lots of bony overgrowth, pressing on nerves and encroaching on my spinal cord.

I'm too tired to tell my story tonight--besides, it's here if you want to read it--just search my old posts from way back on spinal surgery.

Hang in there.

[Michelle F.]

Morgan- Interesting about the angiography. I don't know if that was one of the tests they did a couple of years ago, but I will see what I can find out about it. My local neurologist is the one who had my MRI done. He emphasizes how important it is for me to stay hydrated and not to "crimp off" the blood supply to my head by looking up. He believes that is what I am doing in some of my pre-syncope like circumstances, though with some differences....rapid shallow pant and inability to move my body even though I am conscious.

mkoven- I've heard of that kind of migraine, but think my neuro said I have vestibular migraines. I'll definitely read up on those.

MightyMouse- I'll look up your story in the archives. Do you have EDS? What is the best kind of doctor for this? I have just come across this in the past couple days, so I am not very familiar with it yet. Things are sounding familiar, though. My disc ruptured when I tilted my head upward to put on eye shadow and I heard a really loud pop. I couldn't lift my arms for days or move my neck without excruciating pain before I finally got in to a doctor four days later.

Thanks so much for your input and encouraging words. I am so.... glad I found this site and you guys!

Michelle F.

[MightyMouse]

It's inconclusive whether I have EDS or another similar disorder--my doctors now think I have a yet unidentified collagen disorder, so I'm in the "EDS" family somewhere, or at least a very close relative.

see the ENDF.org side for info on collagen disorders

[mkoven]

Some of my migraines are indeed "vestibular"-- the room spins. Migraine classification is a little funny. I was told that "vestibular" migraines are a form of vertebrobasilar migraines. Regardless of what you call them, these types of migraines are a little trickier because the neurological symptoms mean that blood supply to certain parts of the brain is restricted while you are symptomatic. My understanding is you don't want a treatment that further constricts, as you would be more likely to provoke a stroke. So no triptans. And no estrogens, as these make your blood more clot prone. This is therefore treated as a type of migraine with aura.

I take klonopin .125 for the spins as needed. Toradol is my rescue pain med. And tigan for the nausea. We tried to find a preventive, but so far I haven't tolerated any of them. For me, my diagnosis of and treatment for sleep apnea has really helped these. I used to wake up with the room spinning and the ceiling flickering. Since starting cpap, I haven't woken up to that. I think the lack of oxygen during apnea triggered many of these migraines for me--though I naturally have a tendency to have them. My hormones are also a big trigger.

[Michelle F.]

MightyMouse- EDS definitely sounds like something I may have, but only the hypermobility type. I don't bruise easily or have thin, other than eczema. It sounds like I need a good rheumatologist for dx. My neuro said I have probable fibro and I haven't pursued that, so maybe seeing a good rheumatologist might be a good idea.

mkoven- It's been a long time since I read up on migraines. Thanks. Things are making better sense to me. My vestibular migraines have subsided, but I do still have the vertebrobasilar migraines. I am usually able to avoid taking meds, but my neuro has given me Epidrin (Midrin) which sounds like not a good idea since I only have the one vertebral artery. I think that discovery was made after giving the Epidrin though. I have only taken about 8 in 18 months, but don't think I'll take anymore.

Thanks for helping!

Michelle F.

[Maxine]

Michelle,

I have a missing left vertebral artery, and fetal origin of the left posterior arteries, and the radiologist listed that the missing left vertebral artery was a continuation of the PICA. This was found out at the NIH study through an MRA that was done among all the other testing. Interestingly, an MRA was done locally in 2005, and the radiology report said my arteries were "exquisite".

My local neurologist was given both films on a more recent visit, but the film from NIH EDS study was given to her a few days later.

I asked her why the report from 2005 said my anatomy was "exquisite", if the radiologist, and the EDS geneticist from NIH said the anatomy was not "exquisite".

She said she will compare the two because maybe something happened to the vertebral artery--- I found this amusing, because if the anatomy was in fact "exquisite" in 2005, then if something happened to cause the artery to be missing, I don't think I would be able to talk to her, not to mention type THIS. WHAT!

Anyway, the whole anatomy in that junction is bad, joints, ligaments, bones, vascular------------it's just a mess.

Maxine :0)

[Michelle F.]

Maxine- I've never heard a radiologist use the term "exquisite".....and it sounds like they meant "perfect"? Yeah, I think you'd probably not be able to communicate if something happened since 2005. I'm interested that you mention NIH. I've looked at their site because someone recommended that I consider them. I'm seeing a cardiologist in August and hope to then know what I need to do. I'm thinking take myself to a neuro somewhere that can better dx me. The NIH site was confusing to me and I didn't know where to start on how to see a doc there. If I were to go there, would I have to be in a study, or are there doctors there to see outside studies. A study would be ok, but I just couldn't figure the arrangement there. Thanks so much for responding. It sounds like your condition is much more severe than mine, but it does sound like we have some hypermobility and structural similarities.

Michelle F.

[Maxine]

Michelle,

Can you believe the word "exquisite" was used on the report. The neuro that told me about the report said the rediologist was not very good, and was in his 70s. He missed the missing vertebral artery, and the fetal origin of the posterior arteries completely. Why was he working there? I hope he's not there now. I popped the CD in my computer, and could clearly see the left one is missing.

I was on a waiting list for three years for the EDS study.

I'm hitting a brick wall in this town, and can't get the local docs to take this seriously. All my doctors are out of town except Dr. Grubb who does get this, but he's out on a family leave.

MY PCP is clueless, and I don't see him for much of anything, but do give him a ring if I get sick and need antibiotics for something, and I rarely take antibiotics because they make me so sick.

Maxine :0)

[Michelle F.]

Maxine- Sorry it took me so long to post. I hope that doc is not still there, too. I am learning (the hard way and by reading other's experiences) just how hard and important it is to get connected with the right doctors.

Best wishes!

Michelle F.