Botox for Dystonia ?

[LupusMCTD]

Has anyone ever tried Botox injections? My Nuero at UC Davis suggested to try it since I don't like the side effects of my meds he prescribed, Artane being one of them.

My head jerks uncontrollably backwards like my head is attached to a rope and someone is pulling it. (Can't think of the name right name, Tartive?) Cold air triggers it. I'm pretty much indoors during the winter, as I also have other health problems from Lupus, to Raynauds .

Just curious to hear from others who tried Botox and if it works for them.
Thanks in advance,
Kathy

[Firebird]

Hi Kathy,

I have used Botox for over 6 years now, but only in my eyelid muscles so far, although I have spasms in my neck from time to time. It is nothing to be afraid of, and definitely worth trying. It definitely stops the squeezing in the affected muscles.

I have been reading the dystonia bulletin board, chatting in the dystonia chat room, and otherwise absorbing all I can from all sources. I have "met" people with cervical (neck) dystonia who have absolutely no help from Botox. I have "met" just as many who get some relief, sometimes great relief, with Botox (they may or may not combine it with medication therapy). I saw a television program about a man who got Botox and his cervical dystonia went into remission and has been for many years. You'll never know until you try.

Some things you need to know are:

1. Different doctors have different techniques/skill levels and get different results. If you are able to see a movement disorder specialist, that is usually your best bet.

2. Doctors start with a smaller dose and work their way up to your optimal dose. It would be bad to over-weaken the muscles, and each person responds differently. They also have to experiment with the best injection locations for the individual. It can take a year or more to find the best dose/locations/protocol for an individual. Don't expect overnight success.

3. Some doctors use an EMG to guide where they place the Botox. That is something you might discuss with your doctor.

4. I have heard people with cervical dystonia say that when they start using Botox, they have some soreness from other muscles that haven't been able to work for awhile that now get to move a bit.

Good luck to you if you decide to pursue the injections, and feel free to ask more questions.

Firebird

[pogey]

I have cervical dystonia and firebird, has given you alot of accurate information, however, I would strongly recommend you see a movement disorder neurologist first, that is there expertise. My neurologist does use EMG to find the muscles under greatest stress and those are the ones injected.

Yes the doseage is gradually increased for at the beginning the effects wore off much sooner than the 3 months allotted for each injection. You can only have injections every three months since anything sooner may cause antibodies to develop against the botox and render it ineffective. Experimentation is the key and for myself benefits were definitley felt, at my point any benefit was greatly appreciated. If you have any further questions feel free to write back

[spitball]

Hi- I was recently diagnosed with Dystonia in the head and neck. It is so nice to have a name to go with what is wrong. The Movement Disorder Neurologist mentioned sometimes people have special braces for the neck. Has anyone heard of this? I have an appointment in November with a Dystonia specialist, and the referring Neurologist suggests drug therapy or Botox injections. Any feedback is greatly appreciated. I am so grateful for this chat room.

[nhtom]

Pogey is definitely correct. Whenever practical, you should see a neurologist specifically trained in movement disorders. I have had Cervical Dystonia since the end of 1993 and was diagnosed in 1994. I started receiving Botox in 2002 and have continued to every 3 months. I have also tried Myobloc (Botox type B) and had some luck with it, but it doesn't last as long. If you decide to try the Botox, please keep in mind it may take a few times with it to find a dosage that works (the Dr will start with a lower dosage and increase if needed, depending on your tolerance). You should expect some pain during the injection and following that, possibly some muscle soreness (but for myself anyhow, it hasn't been anything a couple of ibuprofen wouldn't handle). It is worth discussing with your Dr and trying. Good luck.

[Coyote]

Kathy some dystonia's are secondary to other illnesses, such as MS for just one example.

I have been wondering if it was ever to be found in lupus and find it so interesting you have Lupus as well as what seems a dystonia.

When it comes to the appropriate time, especially if you find a movement disorder doctor, do ask. I would like to know as I've been told Sjogrens and at one time Lupus early on. Don't know what to think.

Lupus and Sjogrens can affect the cns as well...so the brain is already involved.

Coyote

[plldgrn]

Hi,

I had Botox injections in my leg 10 days ago due to severe spasticity. So far, I haven't noticed any difference, which is disapointing. The Neuro said that I should notice something 48 to 72 hours after the injections, with the full effect coming after two weeks. I wouldn't think that at the two week mark, it suddenly kick in...maybe because he only used a 70% strength for the first round of shots?

[lorrieB]

Hi im new to this forum, saw a link from birdbomb a while ago on the coping with epilepsy forum...

Ive had botox for cervical dystonia which helped a lot.... first few days i was sore and my head felt heavy... aside from that side effect it helps a lot.... very expensive though..

also was taking keppra for sps cps.... that med made the dystonia go away but it also made me sick was in bed most of the time....

[Sister1]

Hi Kathy.........I have had botox for 13 yrs. 6 months ago I became antibodied to it.(no longer works) Wish I had it back. I like it soooooooooooo much better than mylobloc. I have had some hard times with that . Get second dosage the 4th hope it better this time.............Good Luck Sister 1

[Moxy]

Sister1, I am considering the Myoblock and would like to know from someone who has be though the procedure what it is like.

Botox has been a awful treatment for me personally. I can not tolerate the EMG needle, as it throws my spasms into warp drive and in agonizingly painful.
My Dr used a very large amount and did about 20 injections. I have cervical and oromandibular dydtonia. The combonation of the two involves many, many muscles.
I was in more pain then usual and the 'effects' were minimal.
However my Dr still wants to do another round. She has told me over and over again.......its a process.......we have to find the doseage that will work for you.
I feel as though the BAD overcomes the good witht his treatment and am curious about the Myoblock.

But do try the Botox it has helped thousands of people, you may be one of them.
Try it.

Moxy