Neck Pain??

[Aquadiva]

My daughter was doing much better, but is apparently having a setback. One of the first symptoms she had before being diagnosed 7 weeks ago was neck pain with dizziness and headaches. The neck pain went away after about 4 days, so we didn't think much of it at the time. Now it is back with a vengeance. She had an episode of not being able to really see last night. She said she could see colors, but not make anything out. It only lasted about 5 seconds. She didn't just get up or anything, so it is kind of odd. Also last night the severe neck pain started in again. It is mostly to one side, kind of at 7-8 o'clock. Anyone else experience anything like this? It is very disabling for her and I do have an appointment with her ped tomorrow, but she hasn't seen her since she was diagnosed by someone else, so I really don't think we will get anywhere. Any ideas/suggestions?? Ugh! Just when we thought things were really turning around!!

[lostkendra]

In November, I started to have similiar symptoms. All of a sudden my neck (mostly the base of my skull area) would start to hurt so much I could barely handle the pain. It would take me forever (3-5 min) before I could even move. After that my neck would be very sore for days. I had trouble turning my head. The doctors gave me muscle relaxers and said I must of pulled a muscle.

I then noticed that the sharp disabling pain would happen when I was on the ground of kneeling and about to stand up. When I talked with my family doc and cardiologist they didn't think that it had anything to do with POTs. I continued the muscle relaxer getting very little relief. I ended up in Express Care (a step down from the ER). The doc gave me a stronger muscle relaxer and Aleve.

When I had an episode at school, I went back to my doctor and got the "well, maybe it is POTS" (now, I hadn't seen my POTs doctor in 1 1/2 years because he took a sabatical and then went into research.) My family practice doctor said "it might be time to find you another specialist. My new POTs doc changed some meds around. He said he wasn't sure if the neck pain was caused by the pots or not. He said it was a definate possiblity.

We added more meds to my daily cocktail. I was only on florinef and midodrine. Now I have meclizine, (I'm trying to remember the order we went), skelaxin, lyrica, and clonidine. I do have other meds but they aren't necessarily for POTs, but they are part of my cocktail. Hello med bill!!!

Hope this helps.

[Megan]

As far as actual neck pain, I find the chiropractor helps a LOT. As far as the symptoms you said your daughter has along with the pain, I also take meclizine. It's amazingly helpful. I only take it when I need it, and usually half a pill, but it gets rid of dizziness fairly quickly, and I don't have any funky side effects.

Meg

[jump]

Also massages and heated neck pads help. Doesn't really cure it per se, but makes it more tolerable. Sorry your daughter is experiencing this.

jump

[deucykub]

I have no idea on this one but am wondering if a migraine can manifest that way? My thoughts were leaning this way because you mentioned your daughter could only see colors...

I do hope she feels much better soon! Please don't give up hope. POTS is a roller-coaster with good days for a while, going up, up, up, and then suddenly you've reached the top of that peak and come screaming down. For me, the progress I make, getting better a little each day, seems to give more momentum to get out of each medical slump faster.

(I really shouldn't try analogies. I'm just awful at them! )

[Aquadiva]

Thanks for all the replies. Like the last time, in a few days it was much better. She is still not as good with POTS symptoms as she was before the neck pain, but slowly, but surely, right? At least she made it to school the last couple days. I guess it will just take time to figure this all out, if that is even ever possible. It will be interesting to see if this neck thing continues and correlates with her feeling terrible.

[mkoven]

I was thinking migraines too. For the dizziness (spinning sensation), I take a tiny dose of klonopin. It apparently calms down the vestibular system. I only need .125. Meclizine completely knocks me out.

My migraine doctor thinks that dysautonomia and migraines are definitely connected. And neck pain can also be a migraine.

for me it feels like I have some stiffness in my neck muscles, but when it becomes a migraine, it's as if the migraine is using the neck muscles and then ramping the pain up to a whole other level. I can now tell when it's just my cranky neck and when it's a migraine--they feed off each other though. (A stiff neck that's purely musculoskeletal doesn't make me want to throw up, turn off the lights, and stop all noise.)

[Kelly]

im afraid i cant help you with the neck pain as i dont suffer from it, however when my bp drops really low i also loose my vision, i can see colours, like your daughter and feel as if the room is spinning, this usually happens just before i pass out, i find that it helps to lay on the floor and put my legs up on a chair to increase my bp quickly . . . ive heard that POTs patients should keep their heads up but this is the only way i find i can raise my bp,to make me feel better

Hope the neck pain gets better and she is feeling better soon

K x

[kitchmill]

Like some of the others, my neck pain is associated with my migraines. I get pain either on the side of my neck, or right at the base of my head. Either place results in migraines for me. When the pain starts coming on, I know that it will be followed shortly (within a few hours) by a migraine. I've tried tons of migraine meds, and what's finally worked for me is acupuncture. I don't get the pain nearly as often, and when I do it's much more managable.

[Troy]

Ive also had severe neck problems and pain since I developed POTS but I was never sure why and how the neck was involved with the symptoms or wether others had them too until I came across your post. I can relate to what people are saying in here, my neck pain is also in the area where my skull connects to the spine around the brain stem area.

Thankfully enough the neck pain isn't there everyday but when it does happens it becomes one of my worst symptoms. I ve had it on and off for the past 8 years and it seems to flare up when my POTS symptoms occur , my neck ends up becoming very stiff, sore and achy, and I find myself bending it in every direction and trying to crack it to relieve the pain but that ends up making it worse, almost everytime I get the neck pain it ends up giving me migranes too. The neck pain feels like it has some neurological basis and when I apply pressure on the neck area with my thumb or fingers it gives me a weird sensation sort of like when you the gums in your mouth swell during a cold and u push on the swelling with your tongue and you can feel that sensation in your brain or when you run your fingernails ona blackboard its that sort of nerve and sensitive brain feeling, hard to explain.....

I dont think theres much that can be done for it , put personally I find some relief from it lying down in a dark room for 30 mins to an hour.

Good luck and best wishes!

[flop]

Hi,

I get horrid neck aches and pains too. I'm hypermobile so I usually blame and muscular pains on the EDS. I read something recently about coat-hanger pain associated with POTS. Coat hanger pain is basically muscular aches from the base of the skull, down the neck and out towards the shoulders. The article said that that when out brains are not getting enough blood flow / oxygen that the brain steals extra blood supply from the neck muscles (brain more important than muscles). The lack of blood to the muscles is what causes the pain and stiffness. It made a lot of sense to me and also explained why the neck pains seem to happen at the same time as my worst POTS symptoms.

As others have said heat is often effective at reducing the pain because when the area is warmed up is stimulates extra blood flow to the area. I find that I can help prevent severe stiffness by having a regular sports massage - having any tense bits and muscular knots massaged away regularly means that I don't get too stiff when I next get the pain.

Flop