Spontaneous whiplash? really? never heard of that

[briarrose]

Forgive my writing as I?m heavily drugged still.

Monday I had an intense, sudden, coital headache. That evening I was so exhausted and nauseated that I slept most of the night. I woke up with the worst neck ache (exactly up the neck to the skull where the headache struck me) that I've ever had. As the week wore on so did my neck spasm.

Lying down is the worst. I can?t find a comfortable position and when I do lie down the pain radiates down to my shoulder blade and up to my ear.

Yesterday I finally went to the doctor to find out what the problem is. The doc says that I have what she called "whiplash." One side of my neck is in continuous spasm. It feels like someone is holding a knife in the base of my skull. It has triggered several migraines this week too.

The doctor gave me a muscle-relaxer called Baclofen and some Percocet for the intense pain. 2 hours after I took the medications I started to have an allergic reaction. I went into a complete intense itch from head to toe, I was having hot flashes, my face was hot and tingling, I was dizzy which brought on severe nausea yet again and I was in severe pain still. I took some benadryl which eventually gave me some relief.

The doc also gave me a prescription for physical therapy to my neck; I can?t get in until next Thursday at the earliest. I?m wearing a cervical collar for support which seems to give me some relief.

I haven?t had a decent nights rest in nearly a week. I?m scared that maybe their missing something and I?m starting to wonder about my muscles giving out on me since I?ve been dealing with the worst muscle spasms of my life over the past year.

I know some of this has to be related to dysautonomia somehow, just hope that it?s not autonomic failure.

[corina]

Briarrose,

I can't really help you with this. Although I have neckissues as well, they're different from yours. It's too bad you can't get a PT appointment until Thursday, because I think that will help you! I hope the pain will become less soon and that you will have better nights!

Take care,

Corina

[Ernie]

Hi,

I read somewhere that you can have spasm when you are lacking some electrolytes.

I have spasms but they don't hurt most of the time. My muscle freeze in a movement. They did not find a cause yet.

Ernie

[Poohbear]

I feel for you!! I've had problems off and on with neck/shoulder spasms. Mine tend to be on the left side and I've noticed that it tends to aggrevate the dysautonomia. I speculate in part, this is due to inflammation and the fact that the vagus nerve runs along the left side of the neck.

Try both heat and ice and see which works better. One works better for spasms of voluntary muscles and the other works better for spasms of involuntary muscles.

Gentle isometric exercise can also help sometimes.

For me gentle massage (gently stretching and light massage of the neck and shoulder area) are what have helped with spasms the most. Deep tissue massage feels great in the moment but usually makes me worse the next day.

It also sounds like you have trigger points (this is when, for example, if someone touches a spot on your shoulder you may feel the pain travel all the way up to your ear or some other place). When this happens, get someone to put pressure on both the "start" point and the point where you feel the pain travel. By using pressure along the line of pain you can hopefully get the muscles to relax more.

In case you have never been told....with Dysautonomia it is DANGEROUS to have someone Pop your neck like chiropractors sometimes want to do. It's not the greatest idea for anyone to have their neck popped really but it's particularly true with Dysautonomia so Don't let PT or Chiropractors pop your neck.

Hope this helps in some way and that you will be feeling much better soon!!

[Roselover]

Briarrose,

I am so sorry to hear of your pain! Yes, I expereince something like this off and on. I really found cyclobenzaprine to help. but my doctor stopped me from taking it when my liver enzymes were running high. I haven't asked if I can go back on it now. I would just take it when I had a flare like this. I also use some pain killers sometimes. Do you think your reaction was to the muscle relaxant or the percocet?

Just like PoohBear said, heat and ice help, but try to find the spot that the pain is orginating in...sometimes that's not real obvious. I use a tennis ball between me and a wall to GENTLY find the orginating spasm and then put GENTLE pressure on it. Again, like PB said, deep massage can cause me more problems the next day. (Often, when I can't even turn my head, my neck is so bad, it is actually orginating just below my should blade.)

The thing that helps me the most, and I know it's not what is usually recommended for dysautonomia, is my spa tub. I keep it fairly low temp, but comfortable and the jets are perfect for massaging. I have a seat with something called neck jets which are perfect for what you describe. Maybe you need to have someone drive you over to my house to give it try. I'm sure PT will help, but it's hard to wait isn't it?

I hope this helps a little.

~Roselover

[briarrose]

Hey guys

thx for all of your responses. I forgot to add that the medication that they prescribed for me, caused horrible nightmeres.

It's always frustrating dealing with new issues, especially painful ones and symptoms that are in unfamiliar territory. Although I'm quite familiar with muscle spasms this is just the worst yet.

You guys had some good ideas. Melanie thank you for your offer, I might just give you a call

Ernie, yeah I'm the one that is always saying that low potassium can cause muscle spasms but everytime they test me I'm within normal limits.

Today I'm so over stimulated by people talking around me that everyone sounds like nails on a chalk board. I'm sure the mixture of medications I've had recently.

PoohBear, funny this is all left sided pain. Coincidence? hmmm.

OK, well can't think that clearly right now so I'll let you guys know later how I'm doing.

thx

steph

[Gena]

HI Steph,

So sorry to hear about your neck and head pain. How awful. Whiplash, huh? Have you been dancing a little too energetically or riding roller coasters lately?

Did you try getting some different pain meds or figure out which med you were allergic to? You sound like me, inevitably when I try a med that is supposed to give me relief from something, I get some crazy adverse reaction to it and I'm 10 times worse off than before.

I was going to call you today, but it sounds like you just need some peace and quiet. I'll try to ring you tomorrow to see if you're feeling any better.

Magnesium citrate is also a great relaxer. (I take Natural Calm in powdered, berrfy flavor, you mix it up in hot water and drink like tea).

I've been having severe lower back and hip pain this past week for some reason, so I feel some of your pain, just in a different place.

Hope you find relief soon.

take care,

gena

[Poohbear]

Steph,

I hope you'll be feeling much better soon!

I see where you wrote that when they check your potassium they tell you it's within "normal" limits. By any chance do they tell you what the actual number is?

My cardiologist has said (and actually more than one cardio Dr has said this to me) that because of our sporadic heart rates & bp trouble that they prefer to see patients like us between a 4.0 and 5.0. Often the normal range is 3.5 to 5.0.

For myself whenever my level gets in the low range of normal I start having more episodes.

Now, when they test my potassium I ask for the actual number and verify their lab range.

Also, something I noticed with myself is that everytime my thyroid starts declining again I get this left sided severe spasms like you are talking about. I have Hashimotos' and everytime we adjust my meds (after confirming with lab work) I start to get some relief.

Maybe this is all a shot in the dark but in case it helps you in any way I thought it was worth mentioning.

[DancingLight]

steph,

i have absolutely NO ideas...but i wanted to say that i am thinking about you and i am sorry that you are having such a hard time.

i have neck pain all of the time....probably from cervical stenosis and this really is probably a big part of my POTS...

please be careful with the PT...don't let them do too much that could send you into more of a spell...this is what happened with me...they forget that our bodies are a bit more sensitive...so listen to your body! (which i know you already know how to do!)

emily

[briarrose]

Thanks Emily, I'm usually saying the people that understand are the people that have experienced it and it's reassuring to know that someone understands.

PoohBear - I'm so glad you brought up the Potassium issue. 1 1/2 years ago, I was in the emergency room for intense back pain and cramping. My potassium came back normal but they gave me potassium anyway and I felt so much better. I wish doctor's understood that reference ranges aren't for everyone and to listen to the patient and their symptoms.

I've also recently read somewhere that some of the treatments that we get can show a false reading on potassium level. I think it had something to do with epogen but I'm having a problem recalling this morning.

Thanks again for your support everyone. It's just sometimes scarry to feel like your out there all alone, in severe pain and experiencing something so horrible and new.

[Roselover]

Hi Briarrose,

I was thinking about you this morning and wondering how you are doing? Any relief yet? My offer still stands and I'll be home all day today.

Hoping you are feeling a little better,

~Roselover

[briarrose]

Roselover

Thank you for the offer. I am feeling better today thank you.

I hate wearing that cervical collar but it gives me enough stability to keep my neck from going into spasm. I look like an ambulance chaser

I'm technically suppose to work tonight so I should be sleeping so that I can make it through a 12 hour shift but I finally got pretty good sleep last night with the exception of waking up itching again from the pain pills this time. I've messed up my time schedule

Anyway I hope we can get together soon.

thx

steph

OH, one more thing - when I saw the doctor the other day she said that my lymph glands are all swollen. A few weeks ago I had swollen lymph glands on the right so bad that it hurt to swollow. My axillary glands have been swollen and I have swelling in my collar bone area now.

Has anyone else had problems with lymph glands swelling?

[Roselover]

Steph,

I'm glad you're feeling a little better!! I'm worried about you having to work today though.

I've had the lymph swelling too, but my doctors just shrug it off. I have the worst under my left arm and breast. I wonder if some of your pain is due to this? I think it is Tearose who has lymphedema, she might be able to answer more.

~Roselover

[Jersey Girl]

Hi Briarrose, My POTS (undiagnosed for a good while) started out with severe neck spasms. I had X-rays done of my neck and spine 3 times because of it--no findings. The spasms were definitely worse on the left and were accompained by the most intense debillitating headaches over the past 3 years. I then developed bad neck pain on the right side about a year ago, which I now know was caused by nerve impingment and calcifications in my right rotator cuff (shoulder). I can finally say after shoulder physical therapy that the headaches on the right side are finally subsiding. I thought for the longest time that this most recent neck discomfort was related to the POTS, but in my case it was caused by other muscles substituting for the rotator cuff and again, it is a case of imbalance in the body--musculature this time that caused the stiffness, pain and headaches. I was also told that there is a 50% pchance that I have the same thing going on in the left shoulder, as I have milder, similar symptoms and some weakness as well as noted by the therapist. My physical therapist stretches out my neck muscles carefully 3 times a week and showed me some neck stretches to do at home as well. These exercises do not aggravate my POTS--if anything they help stabilize me because I don't have the constant pain signals sending out distress symptoms to the rest of the body. I was surprised as anyone that the physical therapy has been as helpful as it is. I hope you find out what is causing your bad neck pain as well. Martha

[briarrose]

Thx Martha

I normally have migraines but when it's brought on by muscle spasm, well it gives pain a whole new meaning. It feels like someone is holding a knife in your skull.

When the spasms are in full swing they hurt from the ear down to the shoulder blade and burn. Since Saturday they hurt in my collar bone too. I'm not sure whats going on but a cervical collar helps relieve the spasms and headaches. I get to start physical therapy on thursday.

thx for our input.

steph

[Kimberley]

Hello well, I get that on the left side of my neck, I call it Kinking my neck, to me this is like a charlie horse in that area. Then the headaches come. Dr. Stilman gave me Botox there really helped that. I hope we are talking about the same thing.

Thanks Kimberley

[briarrose]

That's it! It feels like a big charlie horse in the side of my neck

It's worse tonight because I've been at work and haven't been wearing my cervical collar. Stupid me!

[Poohbear]

I'm so sorry to hear you are still in so much pain!! I hope PT will help.

Have you tried massage? Can you afford it? Most cities have a teaching facility where you can see a student in training for a lot less $$.

I hope you find something very soon to bring you some relief. When you do get relief you will need to be very careful. Once a muscle spasm gets like this it is very easy for it to go back into spasm.

Take good care of yourself and please wear the cervical collar as much as you can if it's helping!!