Back Of Neck Pain; Feeling Like Head Is Being Pulled Backward

[lgtaylor100]

I have had this symptom for quite some time. It feels as if someone is taking the back of my hair and pulling my head backward. It is a recurring symptoms and sometimes is worse than others. I do have moderate cervical stenosis but the doctors say that the stenosis would not be causing this symptom. I have had two epidural shots; the first one worked, the second one didn't.

Does anyone else have this feeling in their neck? It's almost like my neck can't support my head.

If anyone does have this symptom and has discussed it with a doctor, I'd be interested in knowing what you have been told. My doctors look at me like I have two heads when I bring up this symptom.

Lynne

[Yolaclover]

Yes, I feel this way often and countless MRI/MRV/MRA studies have been useless. So annoying!!! So frustrating, at this point this is my only really bad symptoms, this and headaches that accompany it. Fortunately my neuro seems to still take me seriously. Good luck! I will keep you posted.

[lgtaylor100]

718mom

Have you found anything to help this symptom?

[HopeSprings]

Back of the neck is a problem for me too - except my neck feels pushed forward. The pressure in the back of the head and neck often corresponds with worse symptoms. And yes it does feel like my head is too heavy for my neck. I have asked several Dr's (including a neurosurgeon and neurologist) about this and showed them cervical MRI's, which show all kinds of problems, and they still think it's unrelated.

[janiedelite]

I have a cyst on my C6 nerve root which causes my neck to always be sore, but I think the POTS-bloodflow issues also contribute. I've gone to quite a bit of PT for this and recently found that the McKenzie neck exercises really help me. These exercises should only be taken on after clearing it with your doc, especially if you have an underlying condition. But my head always feels too heavy for my neck too, however doing the McKenzie exercises helps keep the pain at bay which definitely helps with my overall functioning!

[Yolaclover]

Nothing helps me, I hate feeling like I'm at the mercy of my own body and have no way to control this. Maybe I need Diamox.

[E246]

I have a permanent stiff neck and ringing in that ear. i mentioned it to Dr Mathias when i saw him for the first time last week and he is going to do a brain scan. Will post what happens. up until now i had mentioned this quite a few times to other doctors and they see to ignore it. but i am going to trust my gut feeelings and feel fairly sure it is definitely connected to my symptoms. Also if I twist it sends my heart rate up.

There was a post a few weeks ago with a link to a video of a docter giving a talk about the importance of these neck problems in pots. If you search for neck pain you should find it. if you can't email me and i will go back and find it for you.

All the best.

[Katybug]

I have no curve left in my cervical spine...it is completely straight! Not good cause the chiro says all the weight of my head comes straight down instead of being distributed. I sometimes feel like a bobble-head because my head feels so heavy. The neuro/POTS doc also says he is sure this contributes to my migraines. I can feel golf ball sized knots in the muscles at the base of my skull particularly when I have a migraine and they hurt so badly to be massaged.

The chiropractor has really helped me keep this issue in check. He also gave me a trick that really helps me when my head feels heavy...Take a new roll of paper towels or a bath towel rolled to about the size of a roll of paper towels and put rubber bands around it so it doesn't unroll. Sit in a high backed chair (or this works great if you are traveling by car or plane) and place the roll behind your neck between the base of your skull and top of your shoulders. This takes a LOT of pressure off your neck muscles and nerves because it helps support the weight of your head. (Can also use this trick for lumbar support.) He said the size of a paper towel roll is a good simulation of the proper amount of curvature you should have in your neck.

[janiedelite]

Great idea, Katybug! Thanks for sharing this pretty inexpensive option for supporting our necks!

[GingerA]

I am so sorry that so many of you have this problem but I have to say that I almost jumped for joy to know that I am not alone with this. This neck pain is a relatively new symptom for me and I was so scared that something else was going on besides the joys of POTS. I just went to my first neuro appointment today. He did tests but at the end of the day I got the same old "we couldn't find any problem" speech that all other docs seemed to give me in the past. Now I know that it is just "one of those things."

Something that does help me though is to put some rice in a tube sock, tie it up, and put it in the microwave for 40 seconds. It is warm wonderful relief.

[issie]

Have any of you been checked for Ehlers Danlos. We with this issue have lots of neck problems. The connective tissues are too lax and we stay in a constant constricted state to hold ourselves up - that includes our head. Because of the constant constriction of our muscles to just hold us together it causes the muscles to be over used and that causes spasms and pain. Also, another problem for us with EDS is that in an upright position our cerebral tonsils can drop and compress our brain stems and that can cause POTS issues. Everyone is different with what amount they drop before it causes a problem. This is measured by the amount of drop into the canal where the brain stem is. It is called Chiari Syndrome. Some people have to have surgery for it if the drop is extreme. Something else to look in to.

Issie

[lgtaylor100]

Essie - What kind of doctor do you go to look into this issue?

[issie]

A rheumatologist is who would check you for this and then you'd have to see a genticist to determine the type. Although, if it's the EDS III type they can't check that one with gentic test - just the test I told you to look up on the internet. So, you can almost diagnosis yourself. Not all rheumatologist know about EDS and you should ask if they are aware of and familiar with testing for it BEFORE you go. So, you need to look up the info and be somewhat sure that's your issue before you go.

Issie

[lgtaylor100]

Essie - When were you diagnosed? I am in my 60s and the symptoms only began a year and a half ago. Do you think it is possible for EDS symptoms to show up this late in life.

I do have very sensitive skin (dermagraphia) and definite multiple eyefolds. One of my doctor reports says I have mallampati 1-2. Does anyone know if this is cerebellar tonsils?. I also do have the muscle fatigue and pain but that could go with a lot of things.

At this point I am so worn out that proving my case with another doctor would be hard for me to do so any information I could get here would be helpful. Then I could be reasonably certain in order to make my case. I'm not sure which test you mentioned I could look up on the internet. I'm sorry if I missed it. Suffering from extreme brain fog today.

[issie]

Igail,

I didn't find out that I had EDS III until I was in my late 40's. I knew all my life that I was turning my ankles, falling down, getting bruised, bursting blood vessels easily and hurt all over. One doctor when I was in my 20's suspected connective tissue disorder of some sort - but never pursued that idea. So, I went to Mayo and after having done allot of research and doing the flexibility test - realized that's what one of my issues was. So, even if you're 60 it could still be PART of the problem. The other thing is osteoarthritis. With EDS you get this really, really bad. Because of the laxity of the joints for some reason it sets up all over your body. I think inflammation has allot to do with it because I seem to be in a constant inflamed state. If you do a search in Google on Ehlers Danlos there are a few sites that show the flexibility test to do to check for it. If you can bend your thumb back to touch your arm. If you can cross your pinky finger all the way across your hand and past. If you can bend down and keep your knees straight and lie your hands flat on the floor (I can cross my legs and do this with my knees straight). There are other test - but these are some of them. There are also signs in your skin - like for example; if you lie your hand on a table and put your fingers straight out - in the knuckle area does it look like an elephant foot print - like a big indention in your finger in a circle pattern. There is usually loose skin over the knuckle too. Some of us - especially the older ones have saggy skin under our necks - like looseness. There are other things, but this will get you started.

[lgtaylor100]

Thanks Essie :

I do have some of these symptoms, not all. I do not have inflammation though. I know that because I had blood work to rule out other rheumatic disorders. I do I have an excellent rheumatologist who probably does have EDS knowledge. I don't have an appointment with him until January though.

Is there a good treatment for EDS?

Thanks again,

Lynne

[issie]

Not a single thing that can be done. All you can do is treat the symptoms. I think Vit C is real good, however, because it helps the blood vessels to stay strong and helps the connective tissues to be stronger. It is genetic and if you have it - you just learn how to deal with it. Some have braces for different body parts, to support themselves and some are so bad they're in wheelchairs. I have to take Tramadol and Bentyl for my pain and that helps a whole lot. It actually helps my POTS too. But, I'm HyperPOTS and it might not work so well if you have low blood pressures. What it does do is give you some answers and it's another piece of the puzzle that falls into place. You have a reason for your issues and discomfort and it helps you mentally to accept the way things are. It's pretty liberating to know WHY.

[issie]

As for inflammation - my CRP is always normal. But an Advil really makes me feel better and I don't hurt as bad. So, there may be underlying undetectable inflammation. I don't think science can pick up everything that is going on.

[E246]

Hi Issie, you seem to know alot about eds and you seem to be managing it really well. Have you ever tried HRT to increase your muscle tone. Has this ever been suggested?

I am thinking about going back on it to see if it improves my symptoms. It is suspected i have EDS111 and hyperpots. Have not found any meds yet that really work but my symptoms got worse after i came off HRT before i knew i had POTS.

I would be really interested to know if you have any info.

Thank you.

[issie]

Emma,

Yes, I use estriol gel transdermal bio-identical. I had a complete hysterectomy at age 36 and it's necessary to use something at such a young age. I could not use progesterone - it gave me horrible hot flashes and made my POTS symptoms worse. I started out with bi-est and then was switched to just estriol because of a liver problem that they thought was hormone related. I had to go through a torturous 5 mo. of nothing immediately after my hysterectomy and tried other forms of hormones initially - couldn't use any of them. I found this one compounding pharmacy after trying about 4 others and I can use their products. If you want the pharmacy number - PM me.

I know some about EDS, but there are others that know a whole lot more. One in particular that is on here - maybe she will chime in. I'm still learning. The body and how it works fascinates me - our Creator really made us wonderful.

[E246]

Thanks Issie,

yes the problem is the progesterone. The doctor ok-ed using it for just 2 weeks in every 8 as i had a bad time with it. But i did not know i had pots then so if i go back on it i will have to suffer the progesterone again. I just wonder if it will make the pots generally better and also more specifically my muscle tone down below, which is causing me a bit of a problem.

This is all new to me as a new doctor has just suggested that the EDS is part of the POTS problem.

Thanks for your help. You have been through a lot yourself.

[issie]

Emma,

In my case, progesterone made me worse and my POTS worse too. I can use the estriol - like I said before. If you want the name of the pharmacy that compounds this PM me. The estriol helps the muscle tone that you speak of down below - that's where you use it. Yes EDS and POTS can go hand in hand. Which came first - well, the EDS did because it is a genetically inherited thing and we inherit that at birth. Some of us with EDS just unfortunatly get POTS. Not everyone with EDS gets POTS.

Issie

[HopeSprings]

Issie - if one is not flexible does this pretty much rule out EDS?

[issie]

Usually, someone has been or is very flexible. Some of us that have developed alot of osteoarthritis will not be as flexible as we once were. But, as a child I could wrap my legs around my head and other not so normal things of flexibility. There is usually alot of flexibility. I'm no doctor, so can't answer this question and state this as a fact. But, I would think that there needs to be either alot of flexibility or the skin is really elastic.

Issie