I have had horrendous, constant muscle spasm in the neck and back of head for over 5 years. I was diagnosed with Lyme in December, but so far, oral and IV abx have not helped with the muscle tension, which is by far my most debilitating symptom.
I have tried many, many meds, and none work well for the neck stiffness. The only thing that helps at all are benzos, especially Klonopin (but I am starting to build a tolerance to it and need more to do the same thing).
I am running out of ideas. I have read that some neurologists use Botox to releive muscle spasm in the neck? The prospect of injecting more toxins into my body is horrifying, but I don't think I have another choice. It's getting to the point where it's so bad at times I think about ending it all permanently.
I have heard mixed reviews re therapeutic Botox, including some horror stories. I just want the pressure to go away! Does anyone have any experience with Botox or other ideas for me?
I'm desperate at this point.
Thanks
Posted by Dawn in VA (Member # 9693) on :
I have had three myoblock (botox) injections into some trigger points in my trapezius and paraspinals.
It helped a lot the first two times, but I got nothing out of the third. That one, for whatever reason, made me a little worse.
Have you had radiographs/CTs/MRI's taken yet?
Also, consider trying electrostimulation therapy (tens unit for pain PLUS a stim unit for muscle building).
I ended up getting facet blocks and am thinking about denervation at this point.
Just some sugg's for you to look into.
I hope you start to feel better!
Posted by seekhelp (Member # 15067) on :
I'm so with you on this symptom. It ruins my life. If you EVER figure it out, please let me know. I tried to get a neuro to do botox, but they refused because they said I don't have true dystonia. I'd love to see them live and work a week like this.
I feel for you. It's a horrid symptom for those who understand.
Posted by Dawn in VA (Member # 9693) on :
A sports medicine or orthopedic doc might be the way to go with this, esp. if your neuro refuses. Just a thought.
Posted by Robin123 (Member # 9197) on :
Rick, I never know what's going to help until I try something. Two treatment surprises that relieved pain:
1)chiropractic adjustment of the junction between the skull and top atlas vertebrae - I think they call it an atlanto-occipital adjustment. Brought the color back into my face.
2)cranial work - relieved pressure in all the head bones, which also caused some neck relief.
And then ongoing chiropractic neck adjustments by a good neck adjustor. It's temporary, but helps relieve pain.
Curious if anyone knows: are we hit bigtime in the neck because of cranial nerve involvement? Or is this symptom one expression of spinal meningitis? It was my first symptom.
Posted by Starfall1969 (Member # 17353) on :
I'm with Robin--chiropractic has done WONDERS for my neck!
Posted by TF (Member # 14183) on :
Magnesium is the only other thing I can think of that might help you. See this quote from p. 6 of the Burrascano Lyme Treatment Guidelines:
"Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value. Oral preparations are acceptable for maintenance, but those with severe deficiencies need additional, parenteral dosing: 1 gram IV or IM at least once a week until neuromuscular irritability has cleared."
I'm looking for the magic bullet - chiropractic does nothing more than help 3 hrs. Mg orally does nothing really. Can't find any docs to consider IM or IV Mg with normal Mg RBC levels. Crappy situation to be in when suffering with this symptom
Posted by lemonsnotlymes (Member # 19926) on :
Do Not give up hope!
I had chronic, severe neck pain for a few years. I went to chiros, ortho docs, physical therapists, etc.
I got diagnosed with lyme/babs earlier this year. I have been doing accupuncture every two weeks (1x per month now) with all my meds.
And I have not lying when I say my neck pain is ALL GONE!
I am not sure what the magic bullet it for you, but for me I think accupuncture helped boost my immune system along with the meds for lyme and it relieved the pain.
I have to say part of my protocol is to take these supplements daily: Inflamaquell, Omega w/COQ10, and Bioinflam.
I think it is also worth noting that my LLMD said she finds a lot of those with Babs have neck issues. Just a thought...
Posted by Beautiful Disaster (Member # 21882) on :
Ahhhh, I am with you here on this one too. It has been the most life changing, happiness stealing symptom. It makes me MISERABLE. I am always relieved to see or hear other people with the same symptom because I feel like I'm from Mars as I have stated before.
The only thing that helps me is the benzos as I always guiltily say. But it takes more than rxd because of tolerance. Then there is a strong feeling of guilt because I have to take more to get the job done. I feel so much guilt and afraid because I feel like I'm doing something wrong.
I had Botox and it didn't work for me. I don't know why. I have no idea why it didn't. I felt like it should have worked. I hope it works for you.
Posted by minerva (Member # 20410) on :
meeee toooo. I am going on 8 years with constant horrible neck pain. I have 4 herniated discs in my neck which doesn't help but doesn't always lead to this kind of hellish pain. I am norcos and oxycotin for it and still the pain is constantly there. I tried steriod injections years ago before I knew about the lyme. They did not help...made it worse. I then tried injections of lidocane in my neck to see if we could find the "spots" to calm down.... that did not help either. doctor couldn't believe that did not help and even made me a bit worse.
I had looked at prolotherapy and nerve ablation where they burn the nerve off. But, after the simpler injections were so not helpful I gave up. I had considered botox as well but was concerned with the feeling I have with not being able to hold my head up. Since, I have had all this neck pain I have some muscles that are over worked and some that are weak. My head feels like a big bowling ball I am trying to keep up and my fear was what if the botox might make that worse.
Just my own fears. I would be more apt to use it for my headaches then my neck.
I had looked at Dr. Klngharts site during this time because he did a type of neurotherapy for pain....not sure if he is still doing this but he would be the best since he is doing so much with lyme.
I have had the most help with Osteopathy for the neck pain. It is the only thing that helps beyond drugs for me .....I think it doesn't "fix it" because of the lyme. Good luck and keep us posted on what you end up doing and if it helps.
![[Frown]](frown.gif)