New To The Forum With Dysautonomia Symptoms, Bulging Disk

[Percythetrain]

Hi everyone, I've been having strange symptoms for over a year that seem to wax and wane that seem to fit some type of autonomic dysfunction. I recently found out one of my cervical disks was sticking out from where it should be and I'm hoping that by correcting the disk I can find some relief to the dysautonomia as well.

I would really appreciate it if someone could give me their opinion on whether what I have sounds like dysautonomia. I came across a few posts from people saying that spinal stenosis would be able to cause a variety of neurological symptoms.

Mine are:

* Tachycardia with breathlessness (good and bad days). On bad days I'll get it just from sitting up in bed. On 'good' days I won't notice it all the time but will if I try to exercise, like playing around with my children.

The breathlessness feels just like how a relatively fit person would feel after running energetically for 5 blocks then trying to hold a conversation (I used to be asked if I'd been exercising!). Heart feels the same way. On 'good' days I'm able to go for a walk and feel acceptably.

* Getting up quickly or reaching for something high up causes me to basically go blind for a few seconds, while my heart races and my breath quickens. I also get some type of head rush where my neck will throb violently for a few seconds.

* Bending over (lowering my head lower than my body) is a no-no because it makes my head feel like it will literally explode if I stay in that position long enough. My neck and head will pound so hard they will visibly vibrate with each heartbeat.

* Along with the pounding/throbbing in my head and neck I tend to get the sensation of pressure around it, basically as if somebody was strangling me with every throb. This is probably the symptom that I most want to figure out because it's very scary.

The pounding does seem to be connected to my heartbeats, with tachycardia bringing more neck throbbing and with it more strangling.

* I get random muscle twitches, also waxes and wanes.

* Chest does feel tight, especially while tachycardic.

I'm a bit scared hoping this is not a fatal condition. I haven't yet had an MRI but will in a few days. I do have a disk that has bulged out of its position so it's probably a hernia. I'm just not sure if that's what causing my issues,

[Katybug]

It does sound like it is possible you have some form of dysautonomia. I have cervical spine instability. Last summer I had a discectomy and fusion. I don't regret the surgery for a minute as my spine was so unstable that I was at serious risk of paralysis or death if I experienced any trauma to my neck. With the surgery, my neck is no longer at risk. That being said, both my neurosurgeon and the one who gave me a second opinion and my POTS neurologist were quite clear with me that there is no research or significant proof that c-spine instability causes autonomic dysfunction or that fixing it will relieve that particular set of issues. It can relieve other neurological issues and even headaches and/or migraines in some people. I am glad I was warned of this ahead of time as none of my symptoms were relieved. I didn't experience neck pain even prior to surgery, so the end result was lowering my risk of serious injury to my spinal cord.

[corina]

Welcome to DINET Percy!

[TWynnB]

Hello Percy!

If you find my intro thread somewhere, I started developing dysautonomia signs in November (that I know of), and had urgent cervical surgery December 8th. I really have no doubt (in my case) that the cervical compression caused it, although it can be just a coincidence in some people. I have not officially been diagnosed with dysautonomia, but am waiting to see a nearby doc in a couple of months. I didn't even realize POTS was a possibility until a colleague pointed out all my symptoms in February, and then I did the poor man's tilt table test on myself, and I'll be dang.....it was consistent with it.

Unfortunately, my symptoms have been getting worse instead of better since surgery. I have searched long and hard to find cases if the dysautonomia can resolve eventually after decompression, and can't find anything.

I can note too that I still have cervical myelopathy, so sometimes I'm not sure if my symptoms are CM or DA.!

Best wishes on your journey

[SarahA33]

Hi Percy,

Welcome to the forum! You mentioned bulging discs, I'm not a doctor, but dysautonomia/POTS can come on from some type of trauma. Were you involved in an accident of some sort that left you in such pain? I'm terribly sorry to hear about everything you've gone through. Have your doctors recommended surgery or Physical therapy to try to give you some relief?

Jump to Etiology/Causes:

http://www.physio-pedia.com/Postural_Tachycardia_Syndrome_(POTS)#Etiology.2FCauses

Best of luck to you! I hope you feel better -Sarah

[Percythetrain]

Hi all! Thank you so much for the responses and the welcome .

I haven't really got a proper diagnosis yet because I started with these vague symptoms back like 10 months ago. I'd get winded and have these palpitations, then I notice the blindness whenever I'd move suddenly. But I went to a cardiologist and they said they thought I had anxiety. I started taking clonazepan and it only helped somewhat but did nothing about the blindness attacks or the inability to lower my head.

So recently by chance I discovered a 'ball' on the back of my neck. At first I thought it was some type of a mass 'cause it was pretty large until I realized it was a disk that was totally not where it should be but went back into place depending on my position. That's when it occurred to me that my symptoms might be from that.

What's weird is I didn't get into an accident, at least not recently. I was in a small accident about 8 years ago, a friend of mine was driving and someone crashed into us but we both went home afterward without a need for medical assistance. I've always had a bad neck though, always bothered me from a very young age, but it's hard to say what was the catalyst for the disk coming out of its place.

[Katybug]

Have you considered being evaluated for Ehlers Danlos Syndrome? It is a potential underlying cause for autonomic dysfunction and it is common for EDS patients to have C-spine instability. A good source for information on EDS is www.ednf.org, if you'd like to learn about it.

Also, most docs will send patients for a regular mri for your neck. However, the gold standard for full evaluation of c-spine instability is an upright mri with images taken in neutral, flexion (chin tucked to chest), and extension (head tilt back like you're looking at ceiling.) This gives better images of how being upright and different positions affect the compression of the spine by the discs and even abnormal shifting of the vertebrae in different positions.

[Percythetrain]

Hi TWynnB I heard about the tilt table test but haven't had it yet. I'm considering finding a doctor outside my insurance because they tend to rush you out the door and aren't very helpful, so I was reluctant to ask for more tests until I found my bulging disk. It's hard to say whether I have dysautonomia or just neurological symptoms from the disk but will try to see a neurologist.

I found this website on another board from a doc who claims there can be neurological issues with cervical cord compression

http://www.positionalcordcompression.com/

Hi Sarah! Thanks for the link. I haven't heard back from my doctor yet because I'm waiting for my MRI appointment. I so far only so an orthopedic doctor and he took a look at my neck and ordered my MRI but I'm not sure he even believed my that my disk was displaced because it doesn't really come out if I look to the left and right as he asked me to do lol. I'm seriously thinking about switching clinics because of how rushed these folks tend to be

Hi Katybug, thanks for the info. I will look into what type of MRI he ordered for me. I haven't even read it because I usually can't understand these folks' handwriting and also because he told me I'd be getting an MRI so I took his word for it. But you're right, it would probably be the best for me to get the upright MRI because my disk tends to come out of its position when I look up (extension).

I was wonder whether anyone else gets ill from bending over or lowering their head (extreme throbbing and strangling sensation). I never read about that on dysautonomia articles. Maybe that's a symptom that has to do with my disk and not the autonomic system.

[Katybug]

Oh, yes. Bending over and squatting give me all kinds of symptoms....tight chest and if I stay long enough it feels like my heart will pop like an over filled balloon, breathlessness, constricted feeling in the veins in neck, lightheaded, migraine trigger, sweating, numbness in my limbs.

In addition to my dysautonomia, some of these symptoms caused my one doc to send me to a hematologist to be evaluated for hypercoagulability syndromes. Sure enough, I have one of those too. Unfortunately, there's no way to really say where the dividing line is between the POTS and the hypercoagulability when it comes to symptoms.

[TWynnB]

Percy, the bulge you are feeling isn't your disc (no possible way), it's probably the C7 bulge/spinous process. Mine moves around as well, but it's just the muscle/tendon over it, not the bone itself moving. A disc bulging can cause no symptoms (because it's old or not big enough) to myelopathy (which has heavy legs, stumbling, tingling fingers, dropping things), and everything in between.

Hopefully you can get a good evaluation!

[Percythetrain]

Thanks for the advice everyone! I'm getting my MRI in two days. I was wondering if anyone had experience with them. How safe are they? I read a few horror stories that got me a bit worried. Is vertigo and other nasty symptoms common after one? I'm very neurotic about medical procedures

Hi TWynnB, I think I was wrong to call the bulge a disk (I didn't realize the stuff on the back are called spinal processes! ). Basically it's a bulging spinal process but it isn't C7, I know it's normal for C7 to protrude. This is located at C4 or C5 and it comes out only when I look up. If I look down it goes back into place. It's very strange. I really hope it's not anything sinister. Someone suggested it could be a muscle but it's been this way for months and it really seems to be part of the bone structure. I also have TMD (or TMJ) so hopefully will be able to address that when they see me too.

Hi Katybug, I'm glad to know it isn't just me who can't bend over lol. I was told I should get a carotid ultrasound just to rule out something vascular (I don't really have cholesterol). Hopefully I can get that done soon so I can relax a little

[Katybug]

I've never had any residual effects after an mri. I do strongly suggest that you keep your eyes closed during the mri. I am not claustrophobic but it is tight quarters. If I keep my eyes closed, I don't even notice. I also have been given headphones to listen to the radio station of my choice (I'm sure this varies by facility.) My upright mri place has a movie playing on a TV that's across the room. It sounds like a muffled construction zone as they run each set of imaging but it really isn't bad.

[corina]

I'm with Katie re closing your eyes during an mri! I close them before they shove me in so that I don't notice the tightness at all! Good luck!

[m@t]

By coincidence I have just had my MRI report back and my c5/6 disc is prolapsed and touching the cord. So Ill be interested to see how you get on.

Agree with the above about keeping eyes closed during the mri, the racket the machine makes is quite rythmic and was netter than the shockingly bad music selection they had available!

[TWynnB]

I was just pretended I was at a techno dance club while having the MRI done. Except I didn't dance .

[MightyMouse]

I've had so may MRI's that I've fallen asleep inside the tube. I have a form of dwarfism that gives me nearly identical problems to Ehlers-Danlos hypermobile type. Spinal joints can be hyper mobile just like other joints, but more problematic and the spinal cord and associate nerves can get pressure on them.

I hope you're able to find a doctor who "gets" what's happening with you and helps you feel better.

[Percythetrain]

Hi all! Thanks so much for all the advice! I ended up rescheduling due to a cold, I was worried about getting a fit and ruining the test but the orthopedic surgeon I saw did tell me that I seem to have a hernia based on the protrusion on the back of my neck. I guess with the process being displaced there's a high probability of it.

I also scheduled an appointment with a cardiologist to look into the neck throbbing. It's been throbbing a whole lot these past few days and not just when I bend down or get up quickly, it's just been throbbing away randomly and so has my lower part of the head so I want to have an ultrasound and rule out a carotid issue. If that turns out negative I'll probably have to look into an autonomic cause or something like Chiari's.

Hi MightyMouse! yeah it's so tough to find a doctor that one trusts. I finally decided to find an independent one rather than go through my insurance. Hopefully this guy will be good, he used to see my mom so he's a bit older but she really trusts him