How Many With History Of Neck Issues?

[sue1234]

I have been 'fishing' around the internet trying to find any connections with orthostatic issues and anything else. I have been reading since yesterday about cervical neck issues and orthostatic issues. I am not going to say that all orthostatic people are a result of cervical neck issues, but want to see how many of us might have a connection.

I don't have real obvious neck issues except that at some point 4 years ago when my POTS started, I had been having some really loud popping issues in my neck on occasion. It sounded really bad, and I would immediately take note of how my body felt below my neck, to make sure something serious didn't happen. Since then, I have odd creaking in my neck when turning sometimes. I also have gotten where I can't bend it back to look up.

I have also been reading about Chiari malformation, and not that I now think I have it, but do realize how any abnormality where the brain and cervical spine meet can cause problems. New research in MS is showing an abnormality of the blood flow out of the brain at the cervical region. Some of the symptoms in these diseases overlap with some of the symptoms of POTS.

I had a 'near' whiplash 15 years ago. I was in a mild car accident 10 years ago, with no injuries.

I am asssuming that alot of you EDSers could very well have cervical instability anyway, so I guess I am just assuming that you could have your issues due to this possibility. I also want to see how many of us non-EDSers have a history of any neck issues.

Thanks for the feedback!

[firewatcher]

I've had whiplash twice. Before the onset of my biggest POTS crash, I had recurring "cricks" in my neck where I could not move my head in one direction. The chiropractor was able to help with these as long as I went weekly. I have a disc bulge at C3/C4 and a small bone spur inside C1/C2. My head does not sit straight on my spine, one side of C1 is 20mm higher than the other. I have always been very flexible, but in the large joints, not like EDS. My physical therapist believes that I do have some sort of connective tissue disorder after watching me at Pilates and PT for over a year; I am the most flexible person she has ever had. I have maximum range of motion for all joints, in every direction, which is highly unusual for a 38 year old. I still have strange crackling noises in my upper neck when I turn my head and a chronic daily headache.

hope this helps, let us know if you find anything out.

[Guest tearose]

I had a hang gliding accident in 1979. I was up and trying to navigate downwards and at about 35 feet up, stalled the kite and came smashing down into the sand dune in kitty kawk NC. My head actually dented the side pole. I lost consciousness and was bruised for weeks.

Now that I think about it, I was so out of it, a week later my high school girlfriend and her family upon seeing me drove me directly to the hospital!

[TXPOTS]

I have been 'fishing' around the internet trying to find any connections with orthostatic issues and anything else. I have been reading since yesterday about cervical neck issues and orthostatic issues. I am not going to say that all orthostatic people are a result of cervical neck issues, but want to see how many of us might have a connection.

I don't have real obvious neck issues except that at some point 4 years ago when my POTS started, I had been having some really loud popping issues in my neck on occasion. It sounded really bad, and I would immediately take note of how my body felt below my neck, to make sure something serious didn't happen. Since then, I have odd creaking in my neck when turning sometimes. I also have gotten where I can't bend it back to look up.

I have also been reading about Chiari malformation, and not that I now think I have it, but do realize how any abnormality where the brain and cervical spine meet can cause problems. New research in MS is showing an abnormality of the blood flow out of the brain at the cervical region. Some of the symptoms in these diseases overlap with some of the symptoms of POTS.

I had a 'near' whiplash 15 years ago. I was in a mild car accident 10 years ago, with no injuries.

I am asssuming that alot of you EDSers could very well have cervical instability anyway, so I guess I am just assuming that you could have your issues due to this possibility. I also want to see how many of us non-EDSers have a history of any neck issues.

Thanks for the feedback!

My POTS symptoms started abruptly the day a swim coach instructed me to change my neck position while swimming freestyle. MRIs of the brain and spine did not reveal any abnormalities. The connection could certainly be a coincidence, but I do wonder if this somehow triggered my POTS.

[Notgivinup]

Not sure what's going on with my neck. It's tight A LOT. I was dx with disc degeneration about 10 yrs go, way before POTS ever started. But the pain from that kinda went away when I stopped working so much. (Pet groomer). And some phys. therapy.

One of my first early symptoms of POTS was waking up with a headache every morn. That just went away by itself too.

I also was in a car accident. Well, a semi-truck hit my 2 yr. old and myself while we were stopped at a stop sign. The impact, I guess, was mild because my air bag did not deploy. We were not hurt, and I did not go to the hospital. I was soooo scared for my baby though. I had to remain calm and act like everything was fine, when inside I was shaking and angry, this guy could of killed my baby! I didn't want my son to be scared, so I acted like nothing happened. Police & ambulance came and I asked the police to take us home. We were only a couple miles from home (on our way to Wal-Mart). I made it seem "fun" to ride in the police car. While internalizing all my real feelings.

They drove us home and towed our car. I never thought about the possibility of whiplash. I felt physically fine. My son was not hurt. And for that I was grateful. I just wanted to forget about it, and let insurance fix the car.

I still wonder to this day if that accident set off my POTS, because it was only a couple months later when symptoms began.

[mkoven]

count me in. look at my signature line. i think there's definitely a link for me. i've been wearing a neck brace for a year, and my ans issues have been a lot better. my eds geneticist thinks my ans symptoms started when the cranial-cervical instability and pannus on the odontoid reached a critical point. If I look down, move my head too fast, or have something push my head forward, I feel like I'll faint, and get some funky heartbeats. i don't want surgery, but will gladly put up with a neck brace. my awful headaches, previously diagnosed as migraines are also 90% better since being in the collar. I get a mild headache mid-cycle and the first day of my period, but it's bearable, and ibuprofen has been enough. Before the neck brace, I would get horrendous headaches multiple times a week. i think not many are skilled at looking for cranial-cervical anomalies.

i'm just tired of all the staring and dumb questions about the brace. so i wear a scarf...

[Troy]

Omg what a coincidence, I just came online to create a topic about neck problems and then I saw there was already one here ...

I have some very odd and unusal neck problems, I find that whenever I take an medication or substance my body is sensitive to it immedeatley effects my neck, what concerns me is that the area that I have problems with is always in that same spot where the neck connects to the skull, so basically the brain stem area where the last disk is, it becomes bery painful, stiff, noisy and inflamed and I find the slightest movement causes craking and squishy sounds. The neck pain always causes severe headaches and the other odd thing is I find that I keep waking up during my sleep to bend and crack my neck and once the tension is released from the painful areas I go back to sleep only to repeat the process many times through out the night.

The neck problems started same time as the POTS, i feel certain there is a link because when my pots symptoms worsen so do my neck symtoms.

[sue1234]

Interesting so far!

I remember that one month before my POTS started, it was Christmas, and I had gotten a new weight/work-out station thing so I could work out and build up some muscles(I am not real athletic, just needed some muscles!). Now I wonder if that could have aggravated or even started some neck pathology going on.

I have a new patient appointment tomorrow with a neurologist that my gyn said I HAVE to go see. I have not been looking forward to it, as I have been thinking it will just be another dead-end street. However, now I am going to ask him about possible cervical issues.

Before POTS, I had been having symptoms, such as eyes that won't stay focused on the road(so quit driving) and ear ringing that ENT couldn't find anything wrong with ear. Now I wonder if that was just the start of things that might have progressed to my POTS. Maybe they all have nothing to do with each other and are completely separate entities, but, it doesn't hurt to find out.

[juliegee]

Both my son & I have had MAJOR neck issues. Mack's has actually subluxed twice. I've suffered several serious whiplash injuries. We BOTH live with lots of intermittent neck pain. DEFINITELY connected to autonomic issues.

Julie

[Noreen]

Half a dozen whiplash injuries. Current neck issues - Nerve impingement at c5-6 and 6-7 and cervical dystonia although specialists are debating amongst themselves because the presentation is unusual.

Dx'd with hypermobility syndrome in 1998, probable EDS with vascular component given my stretchy skin.

[MightyMouse]

NonEDS, but likely related collagen defect. Not just neck, but all joints and all areas of spine too.

[Maxine]

Plenty going on with my neck.............thoracic spine............and lumbar/sacral spine. Read signature line.

I had Horrible time with thoracic spine in the last several months...... I can't figure it out. Possibly tempur-pedic bed crushing ribs into spine due to the EDS----it was really way too firm. We have another bed for half the price, and it is better then the tempur----pedic. I still have very bad pain in thoracic spine, but not as crippling. I think the tempur-pedic caused more permanant damage, or something else happened.

Diagnosed with EDS hypermobile type III originally, then at the NIH EDS study it was changed to Classical EDS with hypermobility and vascular involvement.

Currently my neck has been proved to have instability at the c1-c2 area at the cranial junction. 7 1/2mm off on the left, and 7.9mm (axial/rotational instability) on the right which is huge.....................not good................ Lots of insult to the brain stem area already with pannus growth on odontoid bone, small posterior fossa, and pinched off left vertebral artery showing it missing on brain MRAs in both UTMC, and NIH. Dr. Grubb thinks my spine issues cause my dysautonomia. Actually, I think "POTS" is the wrong diagnosis, but what the heck do I know.

I think it's just ANS dysfunction caused by upper spine and brain stem compression combined with additional ANS insult from the poor vascular tone.................all caused by the EDS. This is what EDs can do.....

Of course where in the heck will I find a doctor LOCALLY that GETS this..........Cleveland Clinc doesn't even "get it"! It's my body, and it all seems logical to me. Here's a real coward in action----------just look at a neurosurgeon who doesn't want his tenure messed up, and he dismisses the obvious, because it's complicated, and in an area near the brain stem-----so they let a time bomb walk out of their office. There's too many red flags, and too many MRI, CT scans, and xrays showing abnormal results. IF NIH isn't good enough to make them understand how serious this is, then I don't know who is. I'm probably never going to get the help I need. There's things I know that you don't want to know----let's just say I have the inside scoop, and leave it at that.

Maxine :0)

[rach73]

Hi,

I have no diagnosis of either pots or EDs. Although EDS is looking very possible, I scored 5/9 on beighton scale and I didn't bother looking at my knees or elbows as they are just to tempremental! So really it was 5/5 for exercises tried.

Ive always had problems with my neck, when I was 16 I had to see a chiropractor and he said I had a neck like a swan, very long and straight with no natural curve. Ive managed in the past to sprain my neck and have whiplash. My issues now are that it crunches all the time and that I have problems supporting my head. My neck seems so weak it just cant support it. (must be my big head lol!)

I also find I get very dizzy just turning my head.

Good post.

Rach

[mountain girl]

Yes, neck issues for me. Always acted up easily with pain in my neck for no apparent reason at first, so thought maybe I had slept on it wrong. Then several years before the pots symptoms started I noticed a lump in the left side of my nck, but the doctors I saw seemed to think it was nothing. I think it is and was a cervical disc coming out of place which finally did damage by causing pots and addies pupil in my left eye, which is autonaumic nrve damage making that pupil stay dilated and does not respond equally to light like a normal eye. The thing is I believe I have read pots can be caused by cranial and cervical instability, but how to fix it and or prevent it before it causes permanent damage. I think there are probably other things that cause pots as we have all read about, but this is one possible cause in myopinion.

[sue1234]

Well, I had my appt. with my neurologist. I liked him right away, as he kept the atmosphere very laid back and informal. He did all kinds of testing for cranial nerve stuff, and I was surprised that I actually had a positive test for some of them!! For example, I had to stand with my feet together and then close my eyes. When I did, I would drift slightly to my right. That is a positive Romberg test, and obviously is not normal, and tells him something. He also noticed that one side of my mouth is ever so slightly droopy. I told him its been like that for over a year, and most pronounced when I get up in the morning. I told him I just thought it was due to aging, as in getting "saggy". He said NO. So, little things popped up that were not "normal", but don't really impact me that I've ever worried about them. He did ask me to move my head this way and that way, and he said my neck is too stiff for my age. I told him about all the neck popping and creaking and how I can really not look up to the ceiling anymore.

So, I have to have a new MRI and MRA(?). This time I have to have the imaging of my head and spine. I am very claustrophobic, and can barely manage getting my head into the machine. I don't know what I am going to do with them trying to put my whole body in!!!! Yes, I will take xanax, but I'm not so sure it's going to help this.

One other interesting thing he is checking is for ARSENIC levels. I read up on it and can see where POTS could have some common symptoms. I know it is in pesticides, and one month before my POTS began, we had to have the house treated for termites.

So anyway, I am going to have my neck more closely looked at. He said he has some ideas that he is checking out with testing, but didn't elaborate. I know he needs to see the results before he can venture to make an opinion. I will do all that Thursday, so should follow up next week or two.

[Noreen]

So, I have to have a new MRI and MRA(?). This time I have to have the imaging of my head and spine. I am very claustrophobic, and can barely manage getting my head into the machine. I don't know what I am going to do with them trying to put my whole body in!!!! Yes, I will take xanax, but I'm not so sure it's going to help this.

One other interesting thing he is checking is for ARSENIC levels. I read up on it and can see where POTS could have some common symptoms. I know it is in pesticides, and one month before my POTS began, we had to have the house treated for termites.

Thanks for reporting back. glad things went well.

I am curious if the MRI is going to be done laying down or upright? I have a hunch they would find something on me if they observed the spine while gravity while pulling on it but heck would they listen to me?

We are pretty much fine while we are laying down - why are all the tests done that way?

Don't worry about the arsenic. I used to work on the Heavy Metal Registry - all results are sent to a state DOH office. When my doc ordered tests for ALL heavy metals, my co-workers said 'they really have no idea what is wrong with you, do they?" I'd be surprised if at least half the people here weren't tested at one time or another for one of the heavy metals - lead (pb) was my specialty.

[HopeSprings]

I think it's possible that a chiropractor caused my dysautonomia. I was having problems with dizziness and went to see a chiropractor hoping he could help. Within minutes of a neck adjustment, I felt my first heart racing episode. The symptoms escalated from there over the next few weeks and turned into full blown heart attack and asthma attack like episodes. I have not been right since -- I don't remember having any heart symptoms until this man "adjusted" me. I don't know if my original dizziness was POTS or something else, but I am pretty sure he added new symptoms to the list. After an MRI, it turns out I have two herniated disks, one of which pushes on my spinal canal and is impinging on a nerve root into my arm, as well as degenerative disk disease. Did he cause the herniated disk? I don't know.

[sue1234]

Reen,

So you are saying that heavy metal toxicity is probably not an issue with most of us? I may have not understood what you were meaning about that.

I assume I am having a lying down MRI. But I totally agree with you that they should image while we are upright!! It might show more issues with our necks and the vascular system in our chest, neck and head area.

[sue1234]

Naomi,

That sounds like the "adjustment" was the very start of your dysautonomia problems. Have you had a neurologist address this issue? It sounds like it started with a mechanical issue(the neck) for you and am wondering if it could be helped by addressing the mechanical issue.

[HopeSprings]

Sue- I am just not sure how the current state of my neck would be "causing" the POTS symptoms. I don't think a Dr. is going to know either since they don't really know what causes POTS. I wish I could find a good neurologist to investigate this for me, but I don't know where to turn??

[Christy_D]

I have neck and shoulder issues, as does my son and daughter. My son has the diagnosis of POTS, while my daughter and me have many symptoms. We all have migraines as well. Our chiropractor hit on that maybe its not the migraines that are hereditary but the neck issues that might cause the migraines that is the problem. I'm not so sure though, because my migraines can be anywhere on my head and my neck isn't necessarily hurting at the time. At the same time if my neck is killing me, a migraine is usually around the corner.

[Chaos]

Don't worry about the arsenic. I used to work on the Heavy Metal Registry - all results are sent to a state DOH office. When my doc ordered tests for ALL heavy metals, my co-workers said 'they really have no idea what is wrong with you, do they?" I'd be surprised if at least half the people here weren't tested at one time or another for one of the heavy metals - lead (pb) was my specialty.

This is funny because I only found this site because my husband kept insisting I should be tested for heavy metal poisoning as a possible cause of all my symptoms. When I was researching the topic to appease him, I found all the info on ANS and MCAD stuff which really seems to be the answer.

I have had neck problems since I flew off a trampoline and had a severe hyperextension injury/fracture of the spine when I was 17. Many of my "weird" symptoms started immediately after that and I've told doctors that for years but they always blow it off. I haven't been officially diagnosed with EDS yet, but I'm certainly hypermobile....which was a good thing when I had that accident or I'd probably be paralyzed right now.

The vertebral arteries are certainly contorted just from their normal anatomical alignment as they go from the cervical area into the skull so I would think even small amounts of impingement there would interfere with blood flow and could reasonably be thought to relate to the cerebral hypoperfusion described in the research.

[sandymbme]

I have borderline Chiari malformation/Low-lying Cerebellar Tonsils. I have also been diagnosed with arthritis in my neck. Not sure if this impacted the POTS or not, I think it is a chicken/egg kind of question!

Sandy

[anna]

Yes me and my 3 children all have neck wobbles! instability, I had a brain and spine MRI that was said to be ok!!! my neuro thought my symptoms (numbness down one side migrains visual stuff might be neck related. Sadly he retiered and I never had a follow up appointment. All my 3 children have unstable necks and also have had POTS like symptoms since being very young children actually sisnce they started moving around on 2 feet. we have been re diagnosed with classical EDS, my dad and his side were CEDS and had many ANS things going wrong, my mum and her mum HEDS have and had many ANS related problems, we do not really know to what extent necks have been a problem but most of them had migrains of one type or another.

[Maxine]

Very interesting stuff, too bad we know more then the docs we see about this, and too bad that SOME docs can't get past thier EGO to help us. They're afraid of us----------------if they try to help us and make a mistake it may ruin their reputation...... The cervical cranial region is an area that many surgeons won't deal with because of it being a high risk area. This only tells me that it's even more important that we get the help we need for this reason-------it's a high risk walking around with instability near the brain stem, vertebral arteries, and upper spine. Surgeons would rather tell us something isn't wrong at all, even with the obvious medical proof looking at them in the face.

I know one ANS doc that dared to help us, and many of his peers don't respect him. It's sickening! It's not about helping patients, it's about what we can do for their careers and EGOS. Those that do try to help us get disrespected by those that work beside them. Although I know this isn't always true, it's certainly very difficult to find a doctor who wants to help us, and is also RESPECTED by the medical community.

When my mother in law went into the ER a few weeks ago after a fall that injured her lower back she was dismissed because nothing showed up on an x-ray. They didn't do a CT, and sent her home saying she would be fine and driving in two days. A week later she was admitted to the hospital, and a CT was done showing two fractures in the transverse sacram. HORRIBLE PAIN. What those doctors didn't know was they were about to be tag teamed by my two sister in laws who love their mother, and wouldn't let her be dismissed as she sat there with no proper control of her pain. The orthopedic surgeon didn't even come to see her-------------WHY?............The fracture was supposedly a "stable fracture". She wasn't a surgical candidate, so she was dismissed again, and seen by one of the residents. They ER sent an 82 year old woman home with this fracture. She had been in the hospital for two weeks, and their rehab for another two weeks. Her pain levels are better, but she is now in another rehab outside of this hospital for more rehab, and we are praying they get her bladder and bowels to work again. If cussing was allowed in this site, you would see a lot of F Bombs dropped............I'm sick of seeing docs get away with NOT doing their job!

I don't mean to trail off the subject a bit, but it's important we advocate for ourselves, and if we aren't able, then find someone who will advocate for us. Instability in this area should be taken seriously, as ANS dysfunction isn't the only thing this can cause--------------it's just another one of the red flags.

Maxine :0)