Botox Injections (incessant head pain) ??

Discussion in 'Fibromyalgia Main Forum' started by balletdancer74, Jan 23, 2007.

  1. balletdancer74

    balletdancer74 New Member

    Hi Everyone,

    I've had CFIDS/M.E., FM/MPS complex, everything that goes with it, a small pituitary adenoma, recently now Lyme, etc. for well over seven years (full blown)...

    It's the incessant, 24/7 head pain/pressure that is the bain of my existance!

    It's rare even for people like us to have the every second of your life head pain/pressure.

    I have/had a great neurologist who helped me to gain control of my "head pain attacks" as I don't get classic migraines anymore or classic tension headaches or even cluster headaches anymore. I do have neuropathic head pain as well.

    Nevertheless, we never managed to find anything for the EVERY DAY of my life head (neck too) pain/pressure. I don't have fibrofog or brain fog, but the head pain might as well be up there with as debilitating.

    Anyway, my wonderful neuro retired and I now have another great neuro (thankfully) who said that the ONLY thing that would get rid of my daily, perpetual head pain is botox injections. I know they're expensive, but price is not an issue if it means having days without head pain. It's one thing to have a head pain attack (HPA) once in a while, but to be rid of the chronic head pain would be a colossal help in my quality of life.

    I've done loads of research on botox injections for head/neck pain for years but have refrained from trying it as I have myriad trigger points at the base of my skull, shoulders, shoulder blades, on my head, etc., that I felt it would be my last resort. Also, the thought of injecting a "toxin" doesn't appeal to me, but at this point, I need something to end this nightmare.

    Acupuncture and myofascial massage do help a good deal but never fully rid me of the daily head pain/pressure.

    I've tried just about everything, so here's what has been helping me treatment-wise: Neurontin, CalanSR (preventive), Klonopin (for both the spasms and head/neck/leg pain), Nexium, Zyrtec as needed and migranal nasal spray as needed. I also get weekly vitamin/mineral drips tailored to my deficiencies.

    Any feedback would be most welcome. Thank you in advance for any assistance you all may have with botox for CHRONIC (it has to be the every second of your life type of head pain/pressure) head pain...

    LB32 (Leeza)

  2. mezombie

    mezombie Member

    I started getting migraines in my teens. They were severe, but infrequent. When I came down with CFS, I started getting migraines much more frequently. Sometimes they lasted for days. It was awful.

    I went through all the migraine meds and nothing worked. Luckily, once Imitrex came on the market, I got some relief. Then I developed an allergic reaction to Imitrex. I've tried Topomax and other drugs, but nothing touched my migraines.

    Now I get Botox injections about every three to six months, and I'm virtually migraine-free during that time! I resisted this treatment because it sounded so crazy, but I rarely had a day without a migraine and the pain, nausea, etc. was just horrible. With the Botox, I sometimes (but rarely) get mild migraines which I can nip in the bud with Excedrin Plus.

    Very little is used for this procedure. It involves about a dozen injections in the cranial muscles as well as the neck and shoulders (for me, not everyone). I have it done by a neurologist who specializes in pain and has been doing this for a while. I wouldn't trust just anyone.

    I've never had any side-effects. The ones that I was told of sound just like CFS symptoms, but only last a week or so (and that's if you get side-effects).

    This treatment has really been a life saver for me.

    BTW, some insurance companies do cover it.
  3. mezombie

    mezombie Member

    I was extremely skeptical when my Doc first mentioned Botox as a possibility. Like you, the idea of injecting a toxin into my body was abhorrent to me. However, I was in such extreme pain for such an extended period of time that I let him do it.

    For migraines and muscle pain, the injections are not at all similar to what a dermatologist would do for cosmetic reasons. I'm injected at trigger points in the muscles that affect the cranial nerves, from shoulder muscles, to neck muscles, at my temples, and around my forehead.

    I've had no skin problems with this technique, expect mild swelling sometimes at an injection site.

    My doctor explained to me the amount of botulism toxin it would take to poison someone, and how minute the total amount he was using was. He also was very up-to-date on the research, and is a pain specialist. I would be very careful about who you go to if you go this route. Definitely go to a neurologist, but also make sure he's done this many times before. Mine had.

    As to the needles, they are really tiny, and the pain is very brief because not much is injected.

    Hope this helps.

  4. balletdancer74

    balletdancer74 New Member

  5. balletdancer74

    balletdancer74 New Member


    Thank you for your wonderful and positive feedback. My neurologist has done a gazillion botox treatments, so if I were to end up getting it done, I'd definitely have her do it.

    Keep you posted as to my decision and the end results!

    LB32 (Leeza)
  6. mezombie

    mezombie Member

    Bumping for more responses for Leeza.

    Chronic headaches are absolutely the pits!

    BTW, Leeza, the injections actually helped with the pain from the trigger point as well.

    Glad I could help.
  7. balletdancer74

    balletdancer74 New Member

    C'mon folks...I know more than just Mezombie has tried Botox injections for head pain and trigger points... :)

    Please chime in...not all at once! lol


    LB32 (Leeza)
  8. claudiaw

    claudiaw New Member

    I just read about botox for FM and migraines in my PT's office today.

    I don't have a neurologist, just a rhumey. Are neuro's the one's who do this?

    I also wonder, why and how some insurance's pay and other's don't.

    Thanks for any info, I'm desperate.

  9. mezombie

    mezombie Member

    Botox for migraines is still considered cutting edge. That's why some insurance companies cover it, and others don't. I'm on Medicare, and my Part D Medicare Rx plan does cover it.

    I still conider Botox a last resort. If nothing else on the market works, and you continue to have chronic migraines, then do get yourself to a neurologist. Actually, if you have chronic migraines you should check in with a neurologist anyway, and one that focuses on headaches, to see whether there are other treatments available to you.

    It's important to have a knowledgable doctor do this treatment. And it should be done by a neurologist. Not all will do it, and some are more experienced in it than others. Ask questions!

    Good luck.
  10. balletdancer74

    balletdancer74 New Member

  11. claudiaw

    claudiaw New Member

    Thanks for the reply.

    Bad flare, not on here much.

    Sorry it took so long to reply.

  12. balletdancer74

    balletdancer74 New Member

    I appreciate the input. I actually had braces in my teens and wore both of my retainers religiously every night until FM/MPS and CFIDS/M.E. started creeping up on me. Than the retainers would trigger more head pain, so I stopped wearing them which ultimately shifted my teeth a bit.

    Than I got a really good nightguard - the kind that costs a fortune but that insurance, thankfully, paid for. Anyway, I wore that for a few years while sick which helped with the jaw pain but not the 24/7 head pain. Now, it just makes my head pain worse even though I had it refitted. Go figure.

    As I've mentioned to everyone, I don't have "migraines." I have 24/7 'head pain' and than some days it becomes a head pain attack...sometimes of a migrainous nature or muscular-like nature or neuropathic, etc. Seems everyone is referring to migraines but it's a combo platter that I have. Lucky me! lol

    Nevertheless, thank you so much for taking the time to respond with your father's response to the botox injections and with the suggestions. I'm glad to hear they're working for him.

    I genuinely appreciate it!

    LB32 (Leeza)
  13. balletdancer74

    balletdancer74 New Member

    Hearing how the botox injections are helping you so much has truly uplifted my spirits. My incessant head pain/pressure has been going on non stop for seven years now.

    Looks like I might just have to try the botox. I do trust my neurologist as she does them continuously and on a weekly basis for her myriad patients.

    I would love to have days again where I have NO sensations of pain in my head area. I have totally forgotten what it feels like not to have head pain on a daily basis. How sad is that! ha!

    I'll let you know if I get the botox injections...looks like I'm headed in that direction.

    Oh, as an aside, someone I know from another board with the same type of perpetual head pain has been finding mesotherapy treatment very helpful. Yes, mesotherapy is cosmetic, but with some research (google), you'll find how it has medicinal effects. I think if you write "mesotherapy medicine" you'll get some information.

    Again, thanks for the information...Greatly appreciated!!

    LB32 (Leeza)
  14. joanng

    joanng New Member

    I had a visit w/my pain dr today and asked for botox in my right shoulder. He gave me this shot in my left shoulder in Dec and the difference is unbelieveable. He had no idea what I was talking about...said he didn't "have" any for me and he would give me a script and I would have to get it myself and then he would inject it. He didn't even remember giving me the wasn't until he did his 'test' squeezed my shoulder/neck muscles on the right and I doubled over in pain and then he did the left and I didn't feel a thing...he then said 'oh, you must be right?' what is going on? I'm so disgusted...I've been in a MAJOR flare for the last month, pinched nerve in my foot, then 2 stress fractures in same foot so I couldn't do my yoga (was doing it 4 times a week) my back and neck are a mess and feel like they're screaming. I went to him with such hope and a sense of relief and left feeling like a fool and was in tears. I hate my body right now but I'm going to be gentle with myself, take my meds and vitamins and find a good doctor who gives a crap. anyway, YES botox works and does anyone know of anyone in NJ who administors the shots for pain? Thank you all and for those of you who can get it, get it!
  15. balletdancer74

    balletdancer74 New Member


    I'm sorry to hear about your beyond disappointing experience with your pain doctor.

    I don't know where in New Jersey you live, but if you're near NY, you might want to look there.

    I know that my new neuro (very competent) gives botox every day.

    Dr. Anne Remmes

    She's w/ New York/Columbia Presbyterian...but located at the headache center on 76th btwn 5th and Madison Ave. She even takes Medicare/Medicaid.

    Good luck and do be gentle/kind to your body. I was a former professional ballet dancer and have danced on many an injury...bad idea every time for every dancer, but we all thought we'd lose our jobs or appear unprofessional.

    Our health is the most important thing. Your stress fractures will heal. I fractured my foot just by getting up from my computer chair four years ago as I get "parasthesia" which is temporary paralysis. I just stepped on my foot, didn't feel it, and since I have osteopenia and brittle bones, etc., I broke the foot...never broke a bone as a dancer, ironically! lol

    I had a cast for six weeks and off it went. I did PT for a month and I haven't felt it since.

    Hope you heal up fast!

    LB32 (Leeza)

    Look into neurologists who specialize in head pain as they often give botox injections in the shoulders, neck and head/face. Also, keep looking for a good pain doctor.

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