Husband with Tourettes

[KileyAnn]

My husband has been dealing with tourettes since he was 6 years old. Although his tics completely disappeared for years, lately he's been having vocal tics. He's currently seeing a psychologist who is perscribing him Abilify. It does not seem to be working. He's only used medicine to try and treat his tourettes but now would like to try some alternative approaches. Where do you think we should begin? I'm looking into starting him on some natural calm magnesium but then was wondering if the BonTech supplements would be better? Any suggestions? Also, he doesn't seem to be very open to changing his diet so will supplements even work? Any help would be greatly appreciated. Thank you!

[Chemar]

Hi and welcome

both my husband and youngest son have TS

 

meds have never really helped either and just caused side effects that were a whole lot worse than the tics!

 

we have never used the BonTech supps but did base my son's program on the ingredients in them (see my signature link for details). A number of our members have found them very beneficial, but primarily for kids. I know some adults use them too but the dose has to be much higher and so many capsules a day needed.

 

honestly, without proper dietary modifications, the full benefit of the supps are not going to be seen

 

however, starting your husband on natural calm is a very good idea...maybe also see if he would be willing to start taking epsom salts baths in the evening (2 cups of the mag sulfate salts in a tub of warmest water comfortable. soak for 20 min bf bed)

 

I think once your husband starts realizing how the supps and good diet help him he will become a voluntary participant

[KileyAnn]

Thank you so much for your reply Chemar! I did buy some Epsom salt and I had him soak his feet in it tonight. Will that do any good? I've also ordered the Natural Calm so hopefully that will help a bit too. I agree that after he starts to realize how the supps work he may be more interested in it. He's just never done that approach in his 25 years of dealing with tourettes. Does your husband still show signs or is he tic free? We have two children and I worry about them developing tics. I watch them everyday to see if they're doing anything and it's starting to take a toll on me. I don't know why I'm so worried about it as my husband is the most amazing man ever - tourettes and all - but I'm just so worried about what my children will have to go through if they develop tourettes. Oh well, thanks for your help!!

 

quote name='Chemar' date='Jan 27 2010, 08:32 PM' post='53590']

Hi and welcome

both my husband and youngest son have TS

 

meds have never really helped either and just caused side effects that were a whole lot worse than the tics!

 

we have never used the BonTech supps but did base my son's program on the ingredients in them (see my signature link for details). A number of our members have found them very beneficial, but primarily for kids. I know some adults use them too but the dose has to be much higher and so many capsules a day needed.

 

honestly, without proper dietary modifications, the full benefit of the supps are not going to be seen

 

however, starting your husband on natural calm is a very good idea...maybe also see if he would be willing to start taking epsom salts baths in the evening (2 cups of the mag sulfate salts in a tub of warmest water comfortable. soak for 20 min bf bed)

 

I think once your husband starts realizing how the supps and good diet help him he will become a voluntary participant

[faith]

hello KileyAnn,

could I ask what age did your husband's tics go away? what vocal does he have now? did he ever have vocals before? did he use meds as a child? also, how old are your kids now?

 

thanks

Faith

[KileyAnn]

Hi Faith,

My husband's tics were not noticeable in his early twenties. I just asked him before I replied to you how long they went away and he corrected me and said they have never gone away. They just weren't as intense or as frequent he says but they were still present. (I would have never known he had tourettes and was under the impression they were gone since they were not noticeable) As far as his vocal tics, he did have some "sniffing" while he was a child but most of his tics were motor. He has started "sniffing" again and also makes an "ugh" sound a couple of times a minute. He says that his tics started picking up after he got more responsibility. After he started his professional career, got married, bought a house (bills), and had children the stress made his tics come back more intense. He tried almost every med as a child and says the side effects were worse than the tics so he didn't stay on most of them for very long. The only thing that ever really worked for him was the nicatine patch but after being on it for so long it was not effective anymore.

We have a daugher who is 3 1/2 and a son who is only 4 months old. I've never worried about them getting tourettes but now that my daughter is getting older I constantly watch her for tics. Also, the more I read I realize that they do have a good chance of inheriting it. I need to just enjoy them and not worry about it. My husband says tourettes has made him the man he is and there is absolutely NOTHING wrong with having tics. It gets much easier with age. If you have anymore questions please feel free to ask. My husband has been dealing with tourettes since he was 8 and is now 32 and has done amazingly well for himself.

[Caryn]

Sometimes inflammatory foods can cause tics to kick up.

 

See if he notices a difference after, say, eating a meal like pizza, or after sweets.

 

Omega 3s are very beneficial, too. He would do well to take some fish oil or flax oil supps, or just to include fish in his diet. Be sure it is a good quality and the supps don't have a lot of artificial ingredients in them.

 

Try to avoid high fructose corn syrup and corn syrup when you are shopping for your family. It is even in some organic foods. Many folks on this list say that it can cause symptoms to increase.

 

The magnesium is also helpful as a supplement before bed.

[guy123]

Geez, Abilify is a strong medication (with equally strong side-effects) to start treatment with.

 

If he wants to go the medication route, there are much safer drugs to try first. If they don't work, then move on to the heavy stuff.

 

The light ones and their side-effects:

 

Clonidine

- drowsiness

- decreased sexual performance

- lowered blood pressure (dizziness upon standing)

 

Tenex

- same as Clonidine, minus the drowsiness

 

Topamax

- weight loss

- change in taste

- nausea

 

Marijuana

- short term memory loss

- increased appetite

- euphoria

- legal side effects (in other words, it's probably illegal where you live)

 

Pretty much any "drug" that isn't one of those three is going to either not work very well (based on what I've read) or is going to have potentially horrible and/or fatal side effects. This includes Abilify, and every other drug in that (atypical neuroleptic) class.

 

See this list for nearly every drug that has been tested on tourettes syndrome and tics along with results, side effects, and all the other info you could want.

 

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

 

That's my site. Sorry the colors are so ugly. I'm gonna revamp it soon when I have time.

[guy123]

Omega 3s are very beneficial, too. He would do well to take some fish oil or flax oil supps, or just to include fish in his diet. Be sure it is a good quality and the supps don't have a lot of artificial ingredients in them.

 

Strangely enough, eating fish sends my tic into overdrive for a few hours after the meal.

 

...which sucks because I LOVE fish.

[KileyAnn]

Wow, that is really scary! I knew Abilify had side effects and hasn't been tested well for LONG TERM side effects but now I'm scared! We live in Iowa and nobody here knows a darn thing about Tourettes. His psychiatrist flat out told him that he knows nothing about tourettes (that made us feel great) Maybe I can get him off the abilify and try some suggestions from this board. I know marajuana worked amazingly well for him when he was in college - almost completely eliminated tics. Is there a medicine that mimics what marajuana does?

 

 

Geez, Abilify is a strong medication (with equally strong side-effects) to start treatment with.

 

If he wants to go the medication route, there are much safer drugs to try first. If they don't work, then move on to the heavy stuff.

 

The light ones and their side-effects:

 

Clonidine

- drowsiness

- decreased sexual performance

- lowered blood pressure (dizziness upon standing)

 

Tenex

- same as Clonidine, minus the drowsiness

 

Topamax

- weight loss

- change in taste

- nausea

 

Marijuana

- short term memory loss

- increased appetite

- euphoria

- legal side effects (in other words, it's probably illegal where you live)

 

Pretty much any "drug" that isn't one of those three is going to either not work very well (based on what I've read) or is going to have potentially horrible and/or fatal side effects. This includes Abilify, and every other drug in that (atypical neuroleptic) class.

 

See this list for nearly every drug that has been tested on tourettes syndrome and tics along with results, side effects, and all the other info you could want.

 

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

 

That's my site. Sorry the colors are so ugly. I'm gonna revamp it soon when I have time.

[Chemar]

I know marajuana worked amazingly well for him when he was in college - almost completely eliminated tics. Is there a medicine that mimics what marajuana does?

 

Marinol is prescribed legally for tics, tho I am not sure if it is available in all states

 

The Tourette Syndrome association has funded a fair amount of research on the tic relieving properties of cannabis http://www.tsa-usa.org

[7upMom]

Wow, that is really scary! I knew Abilify had side effects and hasn't been tested well for LONG TERM side effects but now I'm scared! We live in Iowa and nobody here knows a darn thing about Tourettes. His psychiatrist flat out told him that he knows nothing about tourettes (that made us feel great) Maybe I can get him off the abilify and try some suggestions from this board. I know marajuana worked amazingly well for him when he was in college - almost completely eliminated tics. Is there a medicine that mimics what marajuana does?

 

 

[ We live in Iowa as well and although I looked for a adolescent specialist for my son, tsa.org will give you a list of dr's and therapists in Iowa. I know that U of I clinics has doctors that specialize in tourettes. My son takes abilify but that is for a mood disorder, he takes clonidine and that is for the tics and sleep ( hasn't touched his tics at all but does help his sleep tremendously). He also is seen by a doctor at the Mercy Sleep Clinic in Des Moines , who also treats patients who have tourettes and sleep disorders, idk if your husband has sleep issues but they are very helpful there in that area.

[guy123]

I know marajuana worked amazingly well for him when he was in college - almost completely eliminated tics. Is there a medicine that mimics what marajuana does?

 

Marinol is prescribed legally for tics, tho I am not sure if it is available in all states

 

 

Yeah, but good luck finding a doctor who will actually prescribe it. Mine told me "yes it works, but no, I won't give it to you."

 

Also, I've heard it's ridiculously expensive... like hundreds of dollars per month. Buying weed on the street is cheaper, lol.

 

Every instance I've heard of Marinol being prescribed is for cancer patients (to help with nausea from chemo, but only after every other anti-nausea agent has been tried) or for patients with terminal wasting conditions, like AIDS.

[guy123]

Wow, that is really scary! I knew Abilify had side effects and hasn't been tested well for LONG TERM side effects but now I'm scared!

 

My (personal) general rule is you want to avoid anything that can cause Tardive Dyskinesia (which includes Abilify). Other people may not follow that rule. However, TD is essentially like another form of TS, so it sure would suck to have TS and then get TD on top of it. There is no cure for TD. Sometimes if they detect it early enough and you stop the drug it will go away, but sometimes not.

 

I guess if the tics were like extremely bad then I might consider an atypical-neuroleptic (one of the classes of drugs that cause TD), but only if I had tried Clonidine, Tenex, Topamax and marijuana first and they didn't work.

 

Oh wait, and I believe there is a class of drug called "calcium antagonists" that sometimes also work on tics but don't cause TD. They have other potentially bad side effects, like cardiac arrest or something... but hey, the neuroleptics can cause TD and sudden death so I think I'd take my chances with cardiac failure over TD and sudden death.

[7upMom]

Wow, that is really scary! I knew Abilify had side effects and hasn't been tested well for LONG TERM side effects but now I'm scared!

 

My (personal) general rule is you want to avoid anything that can cause Tardive Dyskinesia (which includes Abilify). Other people may not follow that rule. However, TD is essentially like another form of TS, so it sure would suck to have TS and then get TD on top of it. There is no cure for TD. Sometimes if they detect it early enough and you stop the drug it will go away, but sometimes not.

 

I guess if the tics were like extremely bad then I might consider an atypical-neuroleptic (one of the classes of drugs that cause TD), but only if I had tried Clonidine, Tenex, Topamax and marijuana first and they didn't work.

 

Oh wait, and I believe there is a class of drug called "calcium antagonists" that sometimes also work on tics but don't cause TD. They have other potentially bad side effects, like cardiac arrest or something... but hey, the neuroleptics can cause TD and sudden death so I think I'd take my chances with cardiac failure over TD and sudden death.

 

How do they diagnose the difference between TS and TD?

[KileyAnn]

The problem is that every doctor we've tried to get into only see's children and adolescents with tourettes. We cannot find anyone to see an adult with tourettes. I've made numerous calls to the U of I and I finally got him into the director of neurology but he said he's not all that familiar with how to treat tourettes either! My husband has no problems with sleep. I've never met anyone that sleeps as good as him. Do you have a name of one of the doctors at the U of I that specializes in tourettes? I contacted the doctors TSA gave us about a year and a half ago and none of them would see my husband until finally the director decided to after I drove them crazy! Maybe the list has changed in the last year and a half? Thanks for your help...

 

Wow, that is really scary! I knew Abilify had side effects and hasn't been tested well for LONG TERM side effects but now I'm scared! We live in Iowa and nobody here knows a darn thing about Tourettes. His psychiatrist flat out told him that he knows nothing about tourettes (that made us feel great) Maybe I can get him off the abilify and try some suggestions from this board. I know marajuana worked amazingly well for him when he was in college - almost completely eliminated tics. Is there a medicine that mimics what marajuana does?

 

 

[ We live in Iowa as well and although I looked for a adolescent specialist for my son, tsa.org will give you a list of dr's and therapists in Iowa. I know that U of I clinics has doctors that specialize in tourettes. My son takes abilify but that is for a mood disorder, he takes clonidine and that is for the tics and sleep ( hasn't touched his tics at all but does help his sleep tremendously). He also is seen by a doctor at the Mercy Sleep Clinic in Des Moines , who also treats patients who have tourettes and sleep disorders, idk if your husband has sleep issues but they are very helpful there in that area.