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having severe neck pain...


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Hi folks....

UGH! i am having arough evening.. i started to get a headach this evening.. whcih isnt unusual for me... its a neck headach.. sometime I think one of the crappier one to get b/c well its from he neck....

sso I sat in the shower.. and let the warm water beat on my neck and back of my head to try an allieviat some of the pain... GRRRRRRRRRRRR! the heat messed with my pots... but when my neck gets like this its the one of very few things that help.. so I kinda take the gamble...

welll the shower made things Hurt even more.. from the back of my head down to about the middle of my back is swollen... I can feel "LUMPS" starting to form at the base of my skull...all the way across the back of my head.. and there isa lump under neath my skull..(base of skull.. where neck and head meet).. and the oh so lovely hump alittle further dwon my neck is MAJORLY swollen tonight... My botfreind tried to rub my neck... but ti hurts so badly to touch it... and they are lumps in the lump in my neck... and my spine from my head to my tailbone hurt... its hurt to even have clothing on.. rubbing on my skin... I didnt even bother brushing my hair out b/c my hair hurts.. and the pressure from burshing my hair will casue the pain in my neck and head to get worse... luckily though my hair isnt all tangly...

the pain is traveling down my spine.. I'm sure that i will be good nd swoollen come tomorrow morning...

oh joy..

My boyfreind actually got very upset when he saw and felt my neck.. and seen how swollen it is.. and felt the lumps on my head and neck... I told him that I have gone to many doctros over the past 12-14 yrs.. and that my mom has also taken me to many docs. to try and find out the root of my pain.. and cause for swelling.. and we have never been taken seriously... and the pain and swelling gets worse as time goes on... just like the pots it took so many years to get somebody to listen...

I mean in 2001.. my neck was so bad that.. that the doc said had I not come in when I did that I would have lost the use of moving my head and right arm..(paralses).. but could not tell me why.. that was happening.. instead I spent the next 15-16 months on heavvy pain meds and muscle relaxers... and in PT3-4 times a week... the only thing that did help was a TENZ unit... and i have flares where i get that inability to use my arm and move my head...

there have been several things abnormal in MRI of cervical... and during a spinal tap in 2002.. they could not get the needle inbetween the vertebra (SP??).. they said that there was very little space between them.. it took them over 45 minutes to get the needle in.. and 2 docs to do it.. and once they got the needle in my HR shot up high.. and I began shaking very badly... apparently that isnt a normal reaction to have during a spinal tap... how ever i have not been able to find a doc.. who will peice together things. and look at my neck/spine isues asa whole... and am suffering tremendously...

I am so sorry for the length of my post.. I am very frustrated and am hurting.. and not looking forward to what the night will inevitably bring...I feel as though I am running a fever... and my face is very flushed and hot.. and my vision is starting to go squirelly... oh the joy of having a swolen neck... while my boyfreind was rubbing my neck.. my vision started to go blury.. and I felt like i was going to apss out... along with my squeirlly vision I am having these bright spots fly around my face and eyes.. they are bright yellow.. and make mne feel like i want to puke...

sorry guys.. but if any of you have any inpput on where to turn.. I'd greatly appreciate it.. I know one memeber mention a doc to me to see.. and a Dr. thru John Hopkins told me to go see the same doc.. so I'm thinking .. hey maybe I should go see him.. but he is far away.. and I'm not sure how i would swing something like that finacially.. so any suggestion or though.. I'm desperate to not in reason for my pain..Dr. g.. does not think that its pots or fibro related.. but is unsure of what it is.. that makes 2 of us..


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I just read your post and I really think you should go to that doctor that was referred to you. I understand the whole financial thing, esp right now since I don't have any insurance, but you need to get to the root of the problem. I hope you get a good nights sleep. Hope you feel better. :)

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Hi, Dizzygirl,

I'm new to the forum and thought I'd say, "hello". Sorry you are having such a rough time. I've noticed from other postings that you're from Erie. I am, too. I haven't lived there for 20 years, but my family still lives there, so I visit several times a year.

I have multiple herniations in my cervical spine, and my doctors are postulating that there is a connection between them and my POTS. Not sure if they're correct or not, but I do feel better when I'm getting physical therapy.

I also get headaches in the back of my neck, but not as severe as you're describing. I also get tender nodules in my neck and back (my neurologist will inject them with saline every month or so to break them up for awhile) but, while you can feel them, you can't see them swelling.

Are you sure they aren't swollen lymph nodes? I have to admit, I would be inlcined to go to the doctor and have them looked at, especially if you feel ill. Have you ever been examined when they are flaring up? I know that Erie isn't the center of the universe medically speaking, but I'm thinking someone at Hamot or St. Vincent's would take the symptoms you're describing seriously.

My sister lives across the street from a young female electrophysiologist who is supposed to be good. She hasn't been in Erie long. I know that her first name is Kelly, but that's about it. Have you heard of her? When I was diagnosed, she gave my sister a crash course in POTS (my sister did not believe it was a real illness, and Kelly assured her that it was). She seemed to have pretty decent knowledge of it. She told my sister she only treated a couple of patients in Erie with it, though.

In the meantime, you probably should look into the doc at Johns Hopkins. If he was able to help, you'd never regret it, not the distance, the finances, or anything.

Hope you get to feeling better soon. I'll be thinking about you.

Take Care,


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Im so sorry you are having such a time! I really think you should see about that dr. I know it costs, but if you are in this kind of stare you need to follow any lead. I was wondering if yoou could get the name of that electrophyciolgist, she mightknow something or some one closer. I do hope you get some relief. You sure have a great boyfriend!:-)

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I'm sorry things are still acting up for you. You need a brake girl! Sometimes I wish I would pass out for like a week so I could get some rest! I'm sure you're feeling the same way right about now.

I've been gone awhile, so I also wanted to wish you a (capital M) Merry belated Christmas and a POTS free new year. Hope things start looking up for you!



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Guest Belinda

When I first knew something was wrong with me this well a little into it, I started getting this pain in the back of my neck it felt like someone was squeezing it just at the base of my skull, and it felt like I couldn't hold my head up.

It would travel down into my spine..and it felt like I couldn't move like I was paralyzed.

Alot of times I would try moist heat or even ice sometimes on the back of my neck,sometimes that would help.

It was dismissed as tension headaches even though it was only in my neck and spinalk area. I beleive it had somethoing to do with POTS for sure because I never had problems like this ever.

I hope you start to feel better..mine eventually went away and I have no idea why but I ws left with all these other problems over the next months.

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Hi guys.. I dont feel much relief today unfortunatly.. i feel like i have no muscle control in my head or neck.. like it a noodle... blah! heat aggrivates me.. though ice does help...

Belinda.. its kinda funny that you mention your neck and tht pots began after that.. b/c the first time I blacked out.. I was only about 7 (?).. iwas riding a horse down a hill.. and the horse ran too fast.. and I wasnt holding on to tight. and I got thrown off the horse.. and landed hard on my back.. and the lights went out for a moment.. and an other time.. i was like 11-12 yrs old.. i was sled riding w/ a freind.. and zooming down a hill and i at one point started to roll down the hill.. and landed in a bush i think.. and something popped in my neck and I blacked out.. and had a severe headach after that.. and the headache havent stopped since then!

I had pots symptoms before these incidents.. but especailly after the sled riding one.. i really began having problems w/ pots related things..then the whole saga of 2001...

but thank you guys... you support and advice is greatly appreciated... I'm going back to bed.. and going to pop another pain pill....tkae care


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Guest Finrussak

Havent been posting much lately due to my own health challenges...however I couldnt let this go:

Please have a Dr check as those "lumps" just may be lymph nodes...and with your history of FM and CFS...have you ever been to a LLMD??? youre in Pa...and Lyme is very underdx and quite often the reason for many of the chronic sx manifestations!!!

Almost every Lymie I know at one time or another has dealt with the very same "swellings" in the very same places...worth a check .( right now I have multiple painful swellings at base of my skull, right side and behind ears...correllated with having started a new meds regimen about 3.5 wks ago--herx is every 3-5 weeks!!!)

Have you tried heated packs??? whether muscular or nodal...heat works wonders...and with pacs you avoid the dreaded shower/bath passing out stuff

You can fill soft tube socks with rice OR even better, there are 6" x 15" cotton or flannel, filled with flax seeds...can be microwaved and/or chilled...keeps heat for over an hour...I use them for neck and abdomen and back pains...often cant sleep without them

One good one is "health pak" by Sac Sante...linked below ( I dont have anything to do with company nor get a discount...I just like them)

I send 2 two to college with each of my older kids....they often get "borrowed"!!!




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I have horrendous neck pain all the time. I manage with lots of drugs, stretches and special pillows. When I have a particularly excruciating flare, I use microwaveable heating pads that smell very yummy. I use an organic bengay like thing and also have a muscle relieving bath lotion. I take a muscle relaxant daily, along with ultram, etodolac and neurontin, but I often have to increase the doses of the first three as needed. I take narcotics for the worst pain. I also had paralysis. It was on my left side. I was forbidden from playing violin and viola and I am devastated about that since I was a competitive player and loved to make music. I have permanent weakness on the left side anyway from hemiplegic migraines, but the neck stuff makes it worse. I now have decreased feeling in my left hand (my legs have always been much worse). I get bad bad swelling at the base of my skull too and then down the whole c-spine to my shoulders and then to my shoulder blades. My jaw is super bad too. I tried PT and chiropractors and massages and the only thing that helps is the medical massage that I can only afford to do several times a year and then it only helps for a day or two. I have been diagnosed with definite Rheumatoid Arthritis with a probably link to Lupus so they have just decided that my neck stuff is part of that and that it is degenerative. My MRI showed c-5 and c-6 herniated discs but the problem is minor. I have no curve to my neck at all any more. Also, I can't straighten my shoulders and neck in the correct posture way and I hunch over. I hate that part. My stuff might be Lupus but now I feel like POTS might be connected to all this neck stuff too I know my neck movements can sometimes bring on a POTS episode, hmm.... Sorry I can't help, but I wanted you to know that "I feel your pain." :-)


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