Those With Eds And Neck Problems And Pots

[Tanzanite]

My neck is so damaged by EDS and the muscles get so tight I get the worst headache (much worse than a migraine), scalp pain and neck tightness/stiffness and pain, sometimes I've had this everyday for 4mths. Usually it's stress that causes it and it's the muscles in my neck just under my skull that tightens like a drum which causes all the pain. All my glands in my neck come up too, though I have one gland at the top on the right which is up permanently and gets worse at this time. I also have arthritis there too.

It can give me earache, make me feel sick and also feel so ill generally as if I have a really bad virus.

Does anyone else get this and also when I'm like this the POTS or rather the breathing problems I get with POTS becomes worse at that time. I know there are some breathing nerves in the neck and wondering if my neck is so bad it's interfering with these nerves. Anyone else?

[mkoven]

Oh, do I feel your pain! My neck and headaches have been driving me nuts. The two things that help me some are self massaging out the knots of muscle in my shoulders and around my shoulder blades with a theracane and sleeping with a soft cervical collar. But I still get some whopping headaches.

You might want to see a doc though to see if it's "just" spasming muscles and loose joints. Apparently edsers sometimes have chiari which can cause other neurological problems. I believe this is diagnosed with mri.

[Maxine]

As you can see by my signature I have a nasty combination, and the EDS is probably the main issue, which is causing all the other issues. In fact I was just told this by a doctor just last week.

I will be seeing an orthopedist the end of this month who was recommended by my EDS specialist.

The EDS is also destroying my spine---especially my neck, and where my neck and cranium meet.

It's really bad, and continues to progress------the physician that told me my EDS is probably causing everything said the prognosis is not good, and as I age the EDS will progress and affect my joints/ligamants more. As a result, my other conditions will not get better either. To hear this was mind numbing.

My local doctors don't seem to realize the scope of this yet, but as my EDS doctor and other physicians from out of town communicate the seriousness of all this I hope that I can get better treatment locally. In the meantime I have to leave town to get the medical treatment I need.

Your neck/cervical spine being affected by your EDS is very serious, and you need close follow up by a competent physician who realizes the impact this can have on your body-------and how quickly the wrong body mechanics can change your life. You need a good PT who understands body mechanics, and realizes the impact gravity has on you. Also, the PT needs to help you tone your body to help strengthen your muscles without injury to any of your joints or ligaments. If the PT is not experienced with EDS, then he/she needs to communicate with your EDS physician to know the correct PT for your needs.

Do you have a good EDS specialist who has many years experience in the field of EDS, and the other condtiions that commonly exist along with EDS----i.e.----->POTS----chiari/spine related conditions?

Just last night we had my family over for my nephew's birthday, and I felt sad that I could not help out the way I used to. My ex-sister in law, brother, and my husband did the majority the work. I did very little, and I was very discouraged when I went to the grocery store just to pick up stuff to make a dip. I felt so bad that I thought I wouldn't be able to make it to the cash registers. My neck was killing me, I was POTSY, and my legs were numb and weak. On top of that my arms and legs were buzzing........................ I will also see a neurologist at the University Hospitals in Cleveland in Early June.

I'm no longer going to let any doctor dismiss this. Last night I sat on the steps that cascade into my living room and I just turned my neck slightly to the left and had a terrible pain, and then the pain shot into my lower head----and then I saw stars. My Aunt who is a nurse was sitting behind me was looking at me funny after this happened. I was slurring my speech on and off the rest of the night. This also happened after I sat up too long last week. My Dad told me that I sounded drunk as I spoke to him on the phone.

I see my local PCP tomorrow. He is not really dismissive, but does not know a lot about my POTS, EDS, or chiari related conditions. I have to talk to him about consulting with a allergist in regards to lidocaine/local anesthetic reactions, and my fears of sedation drugs for an upcoming colonoscopy. My colonoscopy was scheduled, but had to be cancelled because my mother passed away the same week-----------I was a train wreck, and in no shape for the colonoscopy. Right after that I fractured a tooth-----a molar on the right side of my mouth. It has to be pulled, and I'm terrified because I have terrible instability in the cervical/cranial area-----and my jaw is also very unstable, not to mention my reaction to local anesthetic.

Let's put it this way---------just leaning my head forward to wash my hair one morning last week caused my adam's apple to pop over sideways------------. My neck is all over the place-----and it's scary stuff.

This all sounds rather dramatic-----------but unfortunately all of this is the real deal--------more real then I want it to be.

Make sure you have the best possible care for your EDS, and the other condtions that result from it.

In July 2005 I went to see my neurosurgeon who did my surgery in 2002 on my cervical spine-(dickectomy/fusion--c-5, 6, and 7). Before the surgery in 2002, he also said I has congenital cervical spine stenosis---and pressure on my brain stem from a small posterior fossa/or chiari-0--(only 1mm herniation), and a prominant vertebral artery. On my last visit to see him we discussed the EDS, but he was concerned about the neurological examination as it showed myelopathy as a result of the congenital stenosis.

He said I need a full cervical spine fusion. However, after the "offical" diagnosis of EDS in Oct. 2006-----I told him I was worried about a fusion of that area---c-3 and down. What would happen to the instability issues already existing above that area-----------------???? You and I both know what would happen------------The instability would multiply due to the EDS, and stabilizing the areas below the instability. I'm now at a point where it's difficult to hold my head up. I don't know what I'm going to do, and I feel like something is about to pop in the back of my head.

Sorry to make this a book, EDS and spine issues are pretty serious. My EDS physician made that clear to me in Oct. 2006, and again on April 11th. My EDS Doctor is from Cincinnati Children's Hospital, and when I go to see the orthopedist, I will also see a PT on the same day. The PT from Cincinnati will communicate with a local PT to make sure I'm getting the correct physical therapy.

I hope you can get this checked out right away. I also get the ear aches, nausea---POTS gets worse-------------and I was diagnosed with sleep apnea in 2006. I have problems getting my breath when my symptoms get out of control. I had to take several breaks just to type this----and that was on a lap top...........

Take Care----I hope you feel better soon.

Maxine :0)

[Tanzanite]

You know it amazes me all the help those in the US get, even those who think they dont have much help. You have a Dr who's dealing with one part of POTS/EDS, another for another part etc etc

Here in the UK, I have NO help whatsoever. No one wants to know, they ignore everything I say, they don't give a **** basically. I have no EDS Dr, the nearest specialist is 200 miles away. I saw him once to diagnose it (he came to me, reluctantly and I had to pay for it).

I'm bedbound which makes seeing anyone impossible. All I get is, we'll refer you to a psychiatrist/psychologist. I've been verbally abused by Dr's, told to do more excercise when I was semi-concious and barely able to breathe, I could go on. Hardly any Dr's I've seen have even heard of EDS let alone POTS or know what to do about it.

All the rubbish I go through every single day, Dr's here don't believe me, think I'm making it up. When in truth I can't even wash or have a shower even with help for several months at a time, I can barely even walk to the next room, I can't even be left alone in the house for more than half an hour because of being so ill.

I hate all this.

[Maxine]

I'm so sorry Tanzanite----

I wish I had my health back----and had the energy to help more. I hate seeing people go without the proper care for their serious health problems. If I could just have half my health back, I would use all my energy being a patient advocate----and teach patients to advocate for themselves. I'm sorry in the UK your being treated so poorly------------I wish I could come there and shake a few of those Docs up. Don't they know that WE EMPLOY THEM. It's our health issues that keep them employed, and they are only hurting themselves by treating us like were nuts.

Some patients TRUST their doctors competence-------and doctors make mistakes, sometimes terrible ones. However, some of us know better then to put complete faith in our doctors until we figure out they truly have our best interests at heart----even in the US. And believe me, it takes quite a while with a physician for me to put my faith and trust in them. There are some really good doctors out there, but they are hard to find. Please don't lose hope. It took me a long time------6 years to find a team of doctors to help me, and I'm still not fully there. I'm just starting to get SOME of the care I need.

I'm told we have a great medical system----(however, some of the doctors in that "system" aren't worth a bull chip). I see that patients in Canada and the UK have a terrible time getting good medical treatment sometimes because of the medical system-----------especially seeing a specialist----------I have seen this with many people from this website.

Do you have anyone to help you advocate for better heath care? Family, friends? Will the EDS specialist that diagnosed you contact your other physicians about the seriousness of your condition? Can he/she find someone closer to help you with the EDS and other issues? I had to travel almost 200 miles to see my EDS specialist----and will have to every time I see him. I have to go there to see the orthopedist.

I traveled over 500 miles to see one neurosurgeon, and over 200 too see the one who did my surgery. I feel fortunate that I can take a bath----but my husband has to be there, and I have to wash my hair seperately in the morning. I'm very limited, but not bed ridden. Pretty close to it some days though.......

I wish there was an easy answer to give you. I'm sorry your suffering like that.

HUGS,

MAxine :0)