new here with questions

[cmomma]

Hi everyone! I am new here as my husband's tics have been causing concern for us. This is long, so bear with me!

 

Ever since I've known him (6 years) he has had mild tics (eye rolling occasionally, sniffing always) but I never really thought of them as tics, more like mannerisms...and he never knew they were tics either, but they were always noticeable. He's 27 years old now, if that makes a difference.

 

2 summers ago I noticed him kind of grimmacing his lower lip over and over, and asked him about it. He said it was nothing- just ignore it. Then he started tensing his stomach muscles all the time. I started getting worried so we were looking things up online, and found that he has motor tics. All that we were reading made sense, and he actually said that when he was a kid he remembers adults around him saying that he might have Tourette's but he never went to the doctor for it or anything (so that shows that he has had some form of tics his whole life).

 

Also around this time he got Lyme disease, detected about a month later, and treated with 2 cycles of antibiotic, and has had negative blood tests since.

 

He went to the neurologist about the tics and was told he has chronic tic disorder and that was basically that. We figured it was just something he had to deal with, and it didn't really affect his life much, it was just kind of annoying.

 

He has more recently developed a leg tic that causes him pretty severe muscle soreness by the end of the day. He tenses his feet and legs. I feel really bad for him. He says it is worse when he is stressed and when he is driving and that if he really concentrates he can delay doing the tic but he can't stop it. He says he also does that stomach clench about once a day but it is not noticeable to me, and it used to be horrible. The pain this tic is causing him is leading us to want to find relief for him, or an answer to why this is happening.

 

Can anyone give us any guidance on where to begin? Do you think the Lyme has anything to do with it (my husband thinks it might, but I think it doesn't because of the negative blood test, and because he has had some form of tics - just not this severe - his whole life)?

 

We are at a loss. We know that he has it "easy" compared to some people, but he is in pain every night and it just scares me to think that his body is acting this way, and wondering if it could get worse, or if our children are more likely to have this because he does. I guess I'm just looking for some guidance on what we can do, if anything!

 

Thank you all for listening/reading!

[Chemar]

Hi

sorry it took a while for your post to show since we have some new filters in place to try to cut down on spam

 

I really think you should investigate the Lyme connection more as there are co-infections that can occur with Lyme

If your husband has always been susceptible to tics, then he is also susceptible to things that can "trigger" tics, and Lyme plus its co-infections are known triggers

 

We have a Lyme forum here where you can ask more questions

http://www.latitudes.org/forums/index.php?showforum=19

[MichaelTampa]

I want to ditto what Chemar said. Go over to the lyme board and you can read some about how bad the tests are. Just getting a negative test is far from ruling out that lyme disease is a problem. Getting a negative test is quite common. To deal properly with lyme disease, you really need a specialist, and the problem is worse than that. There are those specialists who are in denial and do nothing but say that you don't have it (such as members of IDSA); then, there are those that know what they are doing (such as members of ILADS).

 

Even the existence of problems such as tics before it really looked like lyme disease means little regarding whether lyme disease is a problem. I had very minor symptoms since childhood, including tics. Then things got much worse. I was eventually diagnosed with TS and of course told there is no cure, just dangerous drugs to help mess up your brain so, theoretically, less symptoms would appear. Then thanks to this board I found out about lyme disease and am doing much better (although not yet completely cured) after getting good lyme disease treatment. I also had a negative test for lyme disease but I first found a good doctor who knows not to just dismiss that.

[guy123]

If you want to go the prescription medication route there are 4 drugs that seem to have a decent effect on tics without all the crazy side effects that most of the others have:

 

Clonidine - An alpha blocker high blood pressure medication used off label for tics

Tenex - Basically the same thing as Clonidine but supposedly has less of a drowsy side effect

Topamax - Anti-seizure medication used successfully by some to help treat tics

THC/marijuana/marinol - Noted in many cases to reduce tics

 

There are dozens of medications used to treat tics but many of them are either ineffective or have pretty bad side effects like Tardive Dyskinesia (a facial movement disorder that is sometimes permanent) or sudden death.

 

If you are going to try the prescription medication thing, try the 4 above first because in most people they tend to have the least severe side effects.

 

In addition to that, there are some other supplements and things that some people report helping tics. These include:

 

- B vitamins

- Magnesium

- Taurine

- Magnesium Taurate (Magnesium and taurine bonded together)

- Quinine (the stuff in tonic water, also available in pill form)

- Epsom salt baths

- 5HTP

 

Some people report "trigger foods" or things they eat which make their tics worse. These tend to vary between people, but some common triggers are artificial colorings, MSG, and sugar. Additionally, some people report other things trigger an increase in tics, such as chlorine (like in a pool).

 

Be aware however that everyone is different. What some people respond well to might cause another person's tics to get worse, and vice versa. Try everything in small doses and slowly increase over time.

 

You should also get medical tests to rule out underlying causes, like you mentioned, like Lyme disease. If the tics are caused because of another condition it's best to eliminate whatever the disease causing the tics is.

 

Here's a list of all the medications that have been tried on tic disorders that I could find. I compiled them by type. You can read about mechanism of action, side effects, etc. Sorry the site is so ugly; I need to redo it.

 

http://www.tourettestreatment.com/list-of-treatments.php

 

Prescription medications should probably be your last resort since they tend to be the most powerful substances you can take. But it's a personal choice between not wanting to use prescription drugs vs. living with tics and how severe they are. I'm not saying definitely get medicated, but if you do decide to go that route, do your research so you know what the potential side effects are. Not all doctors are really familiar with treating tics and some may want to use more powerful drugs (such as neuroleptics, which have the strongest/worst side effect profile) as a first line of defense. Do some research (and read the site I posted) so you are a bit informed and can say "hey, I don't want to start with a neuroleptic because it can cause things like Tardive Dyskinesia, difficulty moving, and it can mess with the Q-T interval of the heart and cause sudden death, so let's first start with [some other drug] instead."

 

I am on a low dose of Clonidine that doesn't eliminate, but reduces the severity of my blinking tic. I know there are other people on this forum who have tried it and even at larger doses have not had much success. And I believe Chemar's husband was on it and got rage side effects. And there was another member whose daughter was on Topamax and was having good results with tic reduction I believe. So like I said above, different things work differently for different people. It's important to keep notes (of diet and supplements) and find out what, if anything, has a positive or negative effect on tics.

[cmomma]

thank you all for your responses...I really appreciate all this! Sorry it has been a while since I checked in here...his leg ticcing went away so of course I stopped worrying for a while but now his abdominal tic is so severe it is really awful to witness and of course extremely uncomfortable and frustrating for him. I cross posted my original post into the lyme subforum so hopefully they'll have some insight as well.

 

Thank you again for the support and advice. I think I am going to start a food/stress/tic journal for him documenting when his tics are worst and if we can pinpoint any triggers.

 

He has also started Magnesium Taurate twice a day and epsom salt baths on the really bad nights, and it does seem to help somewhat.

 

Prescription drugs to us would pretty much only be if my husband couldn't function anymore because of the tics, or if he developed some kind of vocal or motor tic that interfered with his job. We'd rather just deal with them I think. We have a toddler and I'm pregnant and we hope to have more children so I fear the side effects of prescription drugs and dread the 'trial and error' process of finding something that works without causing horrible side effects.

 

Thank you again and any additional ideas or resources are much much appreciated.