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Old 07-21-2008, 05:59 PM   #1
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mvera46 HB User
dysautonomia

I am a 62 year old male who was diagnosed two years ago with dysautonomia. Other significant medical history includes treatment (and recovery) of non-disseminated coccidioidomycosis (valley fever) in 1987 and a current diagnosis of degenerative arthritis with cervical stenosis (c3, c4, c5, and c6). I have been taking 50 mg of toprol xl since November of 2006 to control spikes in my blood pressure and heart rate. My problem is that I still have a laundry list of problems and symptoms that doctors have not been able to address or treat. These include chronic headaches...either a constant dull, pressure type or a migraine type on the left side of my head. I also have pain in my left ear, jaw, neck, arm, and leg...all on the left side only. Other symptoms include chronic fatigue, intolerance to heat and cold, inability to sweat,

 
Old 07-21-2008, 09:34 PM   #2
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Re: dysautonomia

I'm used more used to women, and younger ones at that, with various forms of dysautonomia. Do they know if it's possibly linked to your neck? or are you suspecting that yourself?

Some Mayo clinics and Vanderbilt have autonomic labs if you're really at a loss for decent treatment.

The rest you just have to learn to compensate for, sadly. Stay inside under AC or plan activities when it's cooler. Some people get cooling vests and carry around mister fans.
I've recently taken to drinking things like Ensure and the Carnation instant breakfast mix for the days I'm unable to eat food (from nausea or nausea from food digesting very slowly).
I don't know what to tell you to do about the pain. Likely a good portion of it is from your neck issues and the rest from just not healing well and being so fatigued. When you're tired everything hurts more.
Do you fall at all? I've had a huge decrease in my joint and back pain once I stopped falling all the time.

Again, proper treatment would help a lot instead of justing being "patched" with a beta blocker - some have luck with SSRI's for example.

Last edited by aether4; 07-21-2008 at 09:34 PM.

 
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Old 07-21-2008, 11:18 PM   #3
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Re: dysautonomia

Do you know which form of dysautonomia you have?

Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), Neurally Mediated Hypotension (NMH), Pure Autonomic Failure (PAF), Multiple Systems Atrophy (MSA) or dysautonomic symptoms from mitral valve prolapse?

Shy Drager syndrome and Chronic Fatigue Syndrome both have dysautonomia as a prominent symptom.

Besides orthostatic hypotension and fainting - headaches, migraine, myofacial pain, mild to severe fatigue, muscle aches, excessive sweating/loss of sweating, hot flashes/chills and a host of stomach and intestinal issues - can all be symptoms of dysautonomia.

 
Old 07-22-2008, 05:44 AM   #4
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Re: dysautonomia

there is another possibility here too depending upon just what is being affected within that c spine area. just what are the most significant findings that were listed in the summary of your MRI report on that c spine? if anything up there is actually affecting your sympathetic nervous system at all,it could be that your DA symptoms actually may be stemming from some level of SNS affectaion that is from part of your c spine issues and not actual DA. they can be very very similar since the SNS governs ALOT of our bodysystem functions that are also symptoms of DA. i have alot of what you have but my symptoms are stemming from very definite sympathetic nervous system damage. if that para sympathetic is also somehow involved,even more symptoms would be possible too. just given the fact that you DO definitely have some affectation of certain dgrees within your c spine area,this should at least be considered as one other possibility. sweating or the ability to sweat IS governed at the SNS level as well as heartrate and BP. if you could just type out your MRI summary(how long ago was that MRI done?) it would help to possibly see some sort of real connection there. just one other possible reason for your symptoms. my SNS damage was done at the c 8 nerve level from a spinal cord surgery done to remove a glob of blood vessels,but it does not take something even remotely that invasive to actually affect your SNS to the degree that would show the types of symptoms you have. and just having certain c spine issues espescially where yours are,pain and other insane symptoms could be generated too.

if you don't have an actual copy of your MRI results,you really DO need to get one,and copies of any other types of testing results along with any medical records from any doc who has treated you for this. then go thru everything yourself just to see whats up. this is the only way i can actually stay really on top of all my ongoing medical problems,keeping my own set of all my records. but those testing results really do need to be seen and read thru by you if you have not done so already. for some sick reason(this is more often the case with actual specialists more than primary docs)they do not alwasy tell you everything that is actually found upon any given MRI or other tests,just what 'they' feel is pertinent to your specific issues or problem. why,i don;t know but this IS done routinely by some specialists. so getting and reading thru your own results just really is crucial in order to make sure you are indeed being told everything you should be.

but DO post that summary for us if you can,it would be very helpful in being able to give you the best possible advice. depending upon just what was found in that MRI,there could be a very good reason for the head symptoms too. spinal problems just in and of themsselves can create a host of pain and really crazy neuro symptoms too. and having yours in the upper c spine just could create much more head/face/neck problems from spinal inflammation of nerve roots. this also can severely affect muscle up there too. i have horrid muscle related crap/pain up in my upper back,neck and the base of my skull all from overly tightened muscles from the inflammed nerves up there. when nerves get irritated they send out strange signals to the muscles which contract in response to being constantly stimulated. they just overtighten and create what are called trigger points? little globs of overtight muscle and tissue.

have they ever tried using something like valium just to see if getting those muscles to relax at all might help with some of the other symptoms up there? this would help if part of the issue is TPs or just the overly tight muscles. valium is the only thing that (med wise) that helps relax some key areas up there for me. i can just really tell when i have or have not taken the valium,it just makes that much impact in me up there.

you just need to make certain that what you were Dxed with as the AD actually even IS that and not possible sympathetic damage. the SNS is just pretty vulnerable since its chain runs along the outside of the spinal column all the way down to the lumbar so it can be affected by certain issues you can have within the spine itself. it can also be affected somewhere within the chest wall or neck area too. just knowing the exact nature of your c spine issues(from that summary at the end of the report?) and how long ago your MRI was done would help. marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 07-22-2008, 07:59 AM   #5
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aether4 HB User
Re: dysautonomia

feelbad - Damage to the Vagus nerve, and the subsequent symptoms from it, would still get the dysautonomia diagnosis. Plenty of people with POTS, for example, can actually link it to C spine trauma - but that doesn't change that they now have POTS.

I have instability, mild kyphosis, and spurs on every vertebra from C4 to T1 - yet the nerves in my neck, including the Vagus nerve are at this time perfectly fine - no sign of lesions or even impingement on any nerves. I'm not sure if that's significant at all though there is a link between the kyphosis and Vagus nerve issues.

Last edited by aether4; 07-22-2008 at 08:01 AM.

 
Old 07-23-2008, 05:13 AM   #6
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Re: dysautonomia

i was not implying that it wasn't,just giving another possibility,thats all. my symptoms from SNS damage are the same pretty much as those with AD,thats all i was trying to say. you just always need to be certain where an actual dx came(what was used to determine it) from and be certain that it is what it is. depending upon your doc and how much effort is put into your Dx is realistically what you end up being dxed with ya know? some docs are great and very thorough but unfortuently some are not. sorry you have to deal with this crap too. marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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