neck problems and endless headaches

Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....

Re: neck problems and endless headaches

Postby Finarda » Tue Dec 29, 2009 4:59 pm

I agree with the rest - the rolled up towel, the cranio sacral therapy, heat pads etc

Have you tried muscle relaxants? You can try either over the counter ones or you could ask your doctor for prescription ones (I take Flexeril). It relaxes the muscles in your neck and therefore helps prevent both the neck pain and the headache since tension headaches are caused by the muscles.

Fiona
Diagnosed EDS - Hypermobility 2004. Severe Hemiplegic Migraines. Both kids show hypermobility but haven't been tested.
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Re: neck problems and endless headaches

Postby Powerdown » Sun Jan 10, 2010 4:08 pm

Thanks for craniosacral website, Kittyo. Several earlier links for neck pain no longer work.

I'm new to the HMS site & was prompted to log on by an email from moderator saying I'd be removed for inactivity! Good prompt as I've emailed a craniosacral practitioner re a concern I've had for a few months. In case anyone's interested, I've got mild HMS & I started new job as a Student Support Assistant at Edinburgh Uni in Sept. I take notes for a student with neck problem and, ironically, I think it's troubling my neck! Usually leg joints & lower back I have problems with. Neck is a new problem although I switched from 2 to 1 pillow years ago, so maybe something's been grumbling away...

Anyway, I rarely keep up with forums & blogs but glad I found this thread. I'd also love to know what happened tothe person with severe neck pain & headaches - s/he seemed in a bad way but the thread stopped a couple of years ago...hopefully no news is good news!

Mandy
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Re: neck problems and endless headaches

Postby Finarda » Sun Jan 10, 2010 6:13 pm

Hey Mandy, just wanted to say that I went to Edinburgh University many (many) moons ago. I started reminiscing about it when I read your post and it brought back some fond memories! The first physio, and most helpful, I ever saw was at Edinburgh Uni - I had had back pains for a year or two by the time I started University and sitting in lectures made it really bad. She gave me back exercises to do as well as a lumbar roll to put behind my back and it totally solved my back problems - wish I had had someone so helpful earlier. Ironically the worst physio I ever saw was at Nottingham Uni who told me that my shoulders were hypermobile and that the solution was not to let them exceed the 'normal' range of motion. When I asked her what the normal was she said that everyone knew what the normal was that was why it was called normal. Sigh.

Anyway, the point was (after that long off topic waffle!) that it might be worth talking to the physios at the Uni to see if there was anything they could help you with your neck pain.

Fiona
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Re: neck problems and endless headaches

Postby jax » Sun Jan 10, 2010 8:13 pm

I had severe neck pain for about a year. I'm not sure what
the cause of the neck pain was but there were some theories
it was related to my shoulder. Thankfully the neck pain did
improve after a long time. I did do a lot of swimming (ouch)
very painful and quite a bit of physio shoulder strengthening
with a band. No one is sure what caused the neck pain although
I did have some type of headaches with it too and am now wondering
if that was the source of the headaches. It eventually got better although
I still have problems with it at times and unable to turn head to end
of range - especially if I've been reading alot. A memory foam pillow
did help alot and also neck warmer that you can heat in the microwave.

I hope your neck pain improves. It is a very horrible type of
pain, I know.

Jax
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Re: neck problems and endless headaches

Postby lil_miffy » Fri Mar 12, 2010 3:29 pm

Mum was told today by her gp that she has osteoarthritis in her neck. She already has it in her lower back but till now it had been put down to her having crohns disease. She was with me when i saw prof. b and he said she looked like she also had hms and would be happy to see her for assessment and diagnosis if her gp referred her. However after a lifetime of drs and hospitals and no real success with any treatments she's not keen on going down the diagnosis route for hms. Shes at the point where she has had enough of that side of things and just wants to find ways to manage her condition.
However she is now starting to look into hms and the things i use to help my symptoms to help hers. She is also beginging to understand how important it is to tell physios etc that there is a family history of hms and that she probably has it becuase of treatements for hms sometimes being different for a certain problem than for people without hms. I have lent her my hms book and she is going to start looking at this forum for info and advice so im starting her off with this thread.

Neck wise she's had increasing problems with her neck over the past year or so. In the past she has had bad phases with her neck at one time needing a collor to brace her neck. She has put her neck problems down to her fibro (yet another hms red light) so is particualy upset to hear today that it is osteoarthritis.

Her main problems are pain in her neck, realy bad dizzyness (to the point where some days she can't go out becuase she is too dizzy to walk or is worried she might fall over etc), and i think she mentioned something about numbness at the back of her head. Her fatigue is getting really bad now too (which is a reason why social services are going to provide my care now as she can no longer help me).

Can anyone suggest any good reads online or book form for her to get info on osteoarthritis in the neck and/or hms and the associated neck problems.
Also any advice on what to tell the physio she has been reffered to and in case the physio is hms ignorant, anything she should be avoiding physio wise becuase of hms?
Finally any tips or advice on things she can do to relieve pain and dizziness? -- She is trying the rolled up towel under her head in bed and i have suggested heat therapy too. Iv also pointed her toward the info on chairi malformation in case she could have that too.

She has never used a walking stick or wheelchair and i think she would have to be permenantly stuck on her bum before she would even consider either of these so these are a total last resort (if at all) to help with her neck issues and her back and other pain and fatigue problems)

Her gp has put her on amytryptaline but only for 2 weeks (should she be asking for it long term?) And he has given her a short course of anti-inflamortories. (iv told her about being careful with muscle relaxants etc as it can risk more injury or damage as the joints are more flexible with these meds).

Thanks in advance

cx
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Re: neck problems and endless headaches

Postby Finarda » Fri Mar 12, 2010 3:59 pm

You asked a lot of questions but I can at least show you a pointer towards one of the things - dizziness associated with the neck. If her dizziness is that bad she needs to be seen by someone who specializes in it. Personally, I found my GP useless and relied on my osteo who had taken various courses on dizziness and vertigo to be able to at least rule out some types. I believe audiologists have training in vertigo (I'm assuming she gets the "world spinning" thing not the "about to pass out" thing?) although I'm not sure how much training they have in non inner ear dizziness.

http://www.dizziness-and-balance.com/disorders/central/cervical/cervical.html

Fiona
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Re: neck problems and endless headaches

Postby serenity79 » Fri Mar 12, 2010 4:15 pm

I get neck pain back and forth, and have had Acute Torticollis in the past, (my left ear looked like it was glued to my shoulder :roll: ) but for the last couple of days I have had major pain in the back of my neck. I can still move my head side to side without too much pain, (like saying no) but not backwards and forwards (like saying yes) without tremendous pain and yesterday when I did let my head fall back I couldn't bring it forward again under the power of my muscles alone, I had to put my hand behind my head and push it back up, which was kind of scary! It didn't feel like it had locked, it just felt like there was nothing there. My husband said the muscles around my neck seemed swollen, hard and hot, and the pain is creeping up into the back of my head as well. It's eased a little today movement wise, but it's still very painful. I'm using icepacks and taking my anti-inflammatory meds. Is there anything else I can do to help this go away quicker?
HEDS, Autonomic Dysfunction, POTS, ME, Fibromyalgia, IBS, Icepick Headaches, Migraineous arm, Blepharitis and a cuddly toy.
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Re: neck problems and endless headaches

Postby christianne » Fri Mar 12, 2010 4:41 pm

Hi
I get bad neck pain from spondylitis, where the osteoarthritis is pressing on nerves in my neck, this sends pain down both arms, collecting in the elbows and fingertips and also up over the back of my head sometimes. I find heat can occasionally help although it sometimes makes my dizziness worse(I have POTS too and I think the dizziness is also from that, this doesn't respond well to heat for me). Something that helps is to avoid using my shoulders and arms too much because if i have been carrying things or doing something like trying(trying being the operative word!) to peel veg, (yes yes I know I shouldnt) then that makes the shoulder muscles clamp up and that in turn affects my neck as the cramped muscles push on it. Gently massaging the hard muscles there can help but you need a sympathetic, patient and non finger-challenged other person to do this massage for you....! Having special mirrors on the car so you don't have to turn your neck when driving is also a help, these can be purchased cheaply from Halfords etc. Sleep wise I have a memory foam mattress whch has helped enormously woth theEds as a whole, and I did try a neck memory pillow but found it too firm. Try not to click the neck in a grinding movement but instead to gently tip the neck back and fore and side to side to relieve the tension(taking care not to go too far). Don't spend too long at the computer(!) etc and take care over your position when reading-get a cushion propped up on your lap and the book on th t so that you aren't bending the neck down too far.These are all tips I have thought of so far, I will post more if I think of any, hope some might help.
Christianne
Aged 47, dx EDS 3,POTS, Coeliac, breast cancer 2002. I have 4 children: son 14 - HEDS & Coeliac, daughter 25 - HEDS, POTS, pernicious anaemia, daughter 27 - HEDS, Behcets syndrome, also daughter 22 & 3 grandchildren unaffected as yet.
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Re: neck problems and endless headaches

Postby serenity79 » Fri Mar 12, 2010 4:54 pm

Thanks for the tips! I can't drive anyway, so no issues there. I have a memory foam mattress and my pillow is a memory foam one as well, but it's not one of those really hard ones, it's nice and firm but still has a little give in it, just how I like it.

I shall just have to talk my husband into a lot more massages! :lol:
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Re: neck problems and endless headaches

Postby kittyo » Fri Mar 12, 2010 11:48 pm

hey serenity

sorry to hear your having problems :-( i would seek some chiro help or if that prooves to be a bit tough have you tried bowen therepy? it sounds very bad i use a muscle relaxant and tend to find that helps as my neck muscles are very tight def badger your gp into getting you some of those
hope your feeling better soon
kittyo x
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Re: neck problems and endless headaches

Postby serenity79 » Sat Mar 13, 2010 12:01 am

I've never heard of Bowen Therapy, google here I come! :D I have some Diazepam from when my back muscles were in spasm but so far they don't really seem to be doing much. Will see how I go over the weekend, if I've had no satisfaction by then I'll go back down to the GP I think.
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Re: neck problems and endless headaches

Postby kittyo » Sat Mar 13, 2010 7:54 pm

http://www.thebowentechnique.com/content/whattreat.htm


http://www.craniosacral.co.uk/


try these two sites they might help i have used both of these treatments and found them very useful for my neck which has been terrible in the past
best of luck with that and get well soon xx
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Re: neck problems and endless headaches

Postby layliloo » Wed Mar 17, 2010 5:35 pm

I have problems with my neck and headaches, I sleep on a Swedish pillow which dose help, it works on the same princaple as the towel in the pillow case but as two rolls, one to support your neck and one to hold your head in place, you can get a cheeper version from ikea that seems just as good, instead of spending a lot if your not sure if its right for you. : layliloo
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Re: neck problems and endless headaches

Postby Yavimy12 » Sun Nov 28, 2010 7:28 pm

I've had a few sessions of Bowen Technique although it did make me alot less tired and clumpsy which in turn helps you cope with pain better.
Although the improvements did wear off after a few weeks. My father has also had this as there was a free trial on at our doctors and he found it did help him with his headaches.
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Neck problem

Postby madmum » Thu Mar 07, 2013 8:21 pm

Sorry if this is in the wrong place.
Over the past couple of months I regularly get a problem where my neck seizes up and is impossible to move. This lasts about 5 minutes and is only relieved when my neck goes crack. This then leaves me with a migraine type headache,nausea,dizzy and pins and needles in my arms for a couple of hours. Has anyone got the same or can give me any idea what it might be?
Mum to son with hms,pain amplification,migraine,plantar fascitis,ibs.lactose intolerant,hayfever and numerous allergies. I have hms,arthritis,migraine,p.o.t.s,allergies,and others too numerous to mention. Acused of being mentally ill hence.....madmum.
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