Have any of these meds caused bad effects in Tourettes??

[DsMom]

Heres an update on my son.

The convulsion type things were still really bad last Friday so I was told to maybe try giving him a Prozac, just in case it was an SSRI withdrawal. So i did.

And after i gave that to him he never had another attack as bad as the ones he was having. He then just had bad tic spells where he would sort of freak out but not totally lose it like before.

So anyway that helped get us through the weekend.

Monday comes around and i get apts for the general Dr and the Neurologist on Tuesday as well. Which is today. And neither one of them gave me very much info. Not to happy about that. The general just wants to send him to a new psychiatrist.
Which we are still seeing on Friday. But the neurologist is going to do a EEG test in a few weeks, so am happy about that. It's a start i guess.

My son is doing better i think now he is off all those meds the Dr was trying. Still not happy he has new Bad tics that he never had before.

It's so hard to tell what is normal behavior for someone with tics or not, but again they have never ever been this bad. he gets so angry over it.

I'll be in touch again soon, just trying to stay calm in all this and be there for my son. It is very very stressful and lots of worries

 

[DsMom]

Okay Here's something the Dr said to try. Propranolol
Anyone have any experience with this one???
It is to work on his anxiety and try to help with the tics.
The Dr said he did most likley have a bad reaction to the Gaba meds, and or also a little Lexapro withdrawl.
His bad episodes are over, but some of the bad new tics are sticking around.
Loud gasping noises, and lots of picking the skin which he never had.
I hope this new one helps.
Any input??
Thanks

 

[David Baxter PhD]

Okay Here's something the Dr said to try. Propranolol

Anyone have any experience with this one???

I've had some clients who have been prescribed that for anxiety. It's a beta blocker, It helps to limit anxiety reactions and can apparently minimize tremor.

Propranolol - Wikipedia, the free encyclopedia

Off-label and investigational use
Propranolol is often used by musicians and other performers to prevent stage fright. It has been taken by surgeons to reduce their own innate hand tremors during surgery.

Propranolol is currently being investigated as a potential treatment for post-traumatic stress disorder. Propranolol works to inhibit the actions of norepinephrine, a neurotransmitter that enhances memory consolidation. Studies have shown that individuals given propranolol immediately after a traumatic experience show less severe symptoms of PTSD compared to their respective control groups that did not receive the drug (Vaiva et al., 2003). However, results remain inconclusive as to the success of propranolol in treatment of PTSD.

 

[Retired]

Propranolol (original brand name Inderal), as has been said was originally approved for angina and high blood pressure, but over the years has found use in many diagnoses including performance anxiety and as a preventative for migraine.

It's a fairly benign medication and as long as your son tolerates it, it may be of some use in helping to calm him.

The body's beta receptors are at work whenever we initiate any body movement, such as getting up from a chair etc. By blocking the beta receptors, there may be some slowing down of reactions, some drowsiness but generally people feel good because their overall internal body timing is slowed down, causing a calming effect.

The first week or two of initiating therapy with propranolol may cause your son to feel very very lethargic, to the point where he may have difficulty getting out of bed! This is merely the effect of the loading of the medication and the resetting of the beta receptors to the new medication.

A heads up about one particular side effect experienced by some people which is vivid dreams. If your son reports having strange vivid dreams, it may be the propranolol and the doctor should be told about it. Sometimes they just go away with time or the doctor may adjust the dosage.

Your doctor may have recommended starting at half the dose for two weeks then increasing to the full dose after the initial loading period.

The question that comes to mind, on reading your comments, Dsmom, is, does your son feel any pressure from friends, classmates, family or you or your husband about his tics being a nuisance and that he must try to control them in order not to annoy people?

Does your son have a safe place at home where he is free to tic vocally and bodily any way he needs and to the extent he needs to. How does the family respond to his tics when everyone is having dinner, watching TV or visiting outside the home?

I hope you don't mind these direct questions, but your answers should provide us some insights in order to give you further direction.

Thanks......

 

[DsMom]

My son has no pressure at all from family members regarding tics, kids at school didn't even know he had a problem until now when he has missed so much school. We have totally accepted them and his sisters, dad and other family members don't even see them anymore.

We are trying to get this under control for himself. He is hating life right now. His tics have turned into spasms, but with this new med seams to have helped a little bit to calm him. This problem started when his teeth grinding started. It was a terrible thing that happened all day long and he looked terrible when he did it. Thats why the new meds were started and thats when everything got worse.

He went from a boy that no one noticed much, to someone that couldn't hold still and his whole body is out of whack. So of course now has a bad problem going to school or being around friends because this is all new to him.

And after the Lexapro was tried he now has terribly loud vocal tics. He does pretty well with it anywhere we go except for school situations. He doesn't want to be around anyone right now. He has his room at home as well where he can be by himself.

My biggest worry again is if these meds are doing more damage than good

Thanks for everyones impute.

 

[DsMom]

Well it is now Dec 19th. My son is doing better but still has tics he never ever had before.
I am reading more and more about ssris making tics worse for people that do have tourettes.
I just hope things get better for him and not stay this bad.
I did get the results from the MRI. The Brain was good but he does have polyps and sm cysts in his sinus area.
Has anyone encountered that problem with touretts.
Now with being on a blood presure med I also wonder if it will effect his breathing?
He does breath really hard at night time.
If any one has come accross this would love to hear about it.
Thanks

 

[Retired]

I am reading more and more about ssris making tics worse for people that do have tourettes

I have not come across the literature describing SSRI's making Tourette tics worse. Could you point us to these references?

Now with being on a blood presure med I also wonder if it will effect his breathing?

Are you referring to propranolol?

Some time ago, I suggested a couple of Tourette resources in California for your consideration. Have you made any contact with them?

 

[DsMom]

Hi Steve,
Yes i had contacted the contacts you had suggested.
They in turn gave me more Dr's names that could maybe help us.
I am still awaiting a few to contact me. One I had already contacted, I believe he was associated with UCLA. They can't see my son there because he is over 14 years old. They can only refer me to Drs assoiciated with them. And there is one from the ones they gave me that specializes in OCD and Tics. I am waiting for her to return my call.
We would love to see her. She is a Dr associated with their study clinic on tics, anxiety and ocd at the University.

I have read on other forums lots of people with touretts saying that ssri made there tics worse. Even people that didn't have the tics to begin with, they started things like prozac and they were ticing within a week or so.
I do have lots of papers I printed out that I had taken to our Dr. It had taken me along time to find them but still may have the links saved on my computer.
I will try to find some info and pass them along.

This is what is so madning. Is that the studies don't show this so much, But people's own personal stories are just amazing. They sound just like my son. When they take the anti depresants the tics are bad and when they stop them they go away.
I have read other articles where it isn't just the ssris but anti depresants in general, and also the ADHD meds. I have read that kids with touretts should always stay away from ADHA meds.
This is why i am going crazy trying to find a Dr that can treat OCD and the Tics with out making one or the other worse.
It seams like someone would know something about this.
I was doing search's on tics being made worse by ssri's, tics and prozac, touretts and prozac. I found all sorts of things.

The propranlolo is what I was refering to with the breathing.
Now that I know he has polyps in his sinus area I was concerened about his breathing and being on this new med. He has told me a few times he felt so tired he felt like he wasn't even breathing.
He breathes really heavy at night as well.

Thanks again

---------- Post added at 02:39 PM ---------- Previous post was at 01:45 AM ----------

Here is just one article I found right away on tics.
Donna Williams: Tourettes's Tics and OCD Should Not be Mistaken for Stims

 

[David Baxter PhD]

Here is just one article I found right away on tics.
Donna Williams: Tourettes's Tics and OCD Should Not be Mistaken for Stims

Be very wary of anectdotal articles like this you find on the internet.

The very first thing you should do when you come across anything like this is look at the author's cerdentials. In this case, they reveal nothing whatsoever that suggests this individual is an expert or a credible source of this type of information: Donna Williams: About Donna

Indeed, as with many cases, what you see is evidence of multiple diagnoses and/or uncertainty in diagnosis. You'll also note that her comments are based entirely on anectdotal observations, NOT controlled and replicated research evidence - this opens the door wide for superstitious thinking based on spurious correlations.

 

[DsMom]

Yes alot of the articles that i found were not replicated research evidence. But mainly people's own personal experiences with anti's and tics. That is just as important to me. There is a big study out on Prozac and Tics. Not causing
touretts but can bring out the tics that were hiden,or causing tics in people with out any tic disorders.
I will find that web site,but for the most part
again these are people from forums and their sad stories of Prozac and others
making their touretts worse.
Which is excatly what it does to my son. No matter how much a Dr wants to tell me it isn't related, It is!!!
When our general Dr first put him on prozac for a mild tic 2 1/2 years ago, with in two days he was making vocals. Each day it got worse.
The Dr stopped it after a week of use and it disapeared.
When the new Dr put him on it again a year and a half ago it did the same thing but not bad enough to stop it sense it helped right away with the ocd thoughts.
Now that he has been off Prozac for for about a month and a half and we've been trying to introuduce it to him again,every other day.
The day he takes the pill he sounds like a loud seal and gasps for air.
The day he doesn't take it, It's almost gone.
I know that is the prozac. We are trying to keep him off it. It's hard when Dr's are only guessing themselves on what will work and what will not.
I feel like we are trying to be our own Dr and in this case it sure would be nice to have some help from a Dr that knows Touretts. Which isn't easy to find around here.
My personal opinion is, Sometimes we know better then the research teams on some of these drugs.
We have lived everyday and been able to watch our kids everyday react to medications. We have experienced it first hand. They have not.

 

[David Baxter PhD]

Let me put it this way: On Friday, I struggled on my own to get a large package into my house... too large and heavy to just pick up and carry, and the box was falling apart which made it even trickier. A short while later, I developed a cough and started feeling quite achey. By late that night, it was clear that I had a cold or some sort of flu, and I've spent the rest of this weekend laying low and sleeping a good part of the time.

Should I conclude that bringing in that package gave me the flu?

That is the problem with anecdotal evidence, as opposed to controlled research.

And when you are reading this information online, what's even worse is you don't even have all of the information you need to draw any informed conclusions. For example, someone reports that they took Prozac and suddenly started having tics. What has been left out about that person's medical history, previous medications, family medical history, other mental health diagnoses, substance abuse, eating habits, etc., etc., etc.? The person reporting this "side effect" may be well intentioned but, as my mother used to say, the road to hell is paved with good intentions.

No, you do not know more than your doctors. You may know your son a lot better than any doctor will ever know him but that doesn't mean you know enough about medications and how they interact with one another or with other medical and mental health conditions to draw those sorts of conclusions.

I'm less concerned with what decisions you might make for yourself or your son than I am about leaving the impression for other readers that medications like Prozac are "bad" drugs or that doctors don't know what they're doing when they prescribe them.

 

[Retired]

The realty of Tourette is that tics in a given individual wax and wain over time. They can vary in intensity and in their nature over months, weeks, days and even time of day.

Some tics in the repertoire evoleve over time to become variations of their original versions while others remain stable throughout a lifetime.

In some people tic activity declines with age, while in others it does not.

The point is that if and when a diagnosis is confirmed by a medical practitioner who has a specialized interest in Tourette Syndrome, the next step is to help the person afflicted with develping strategies to deal with the challenges they will encounter in life.

As has been mentioned, not all medical practitioners, be they general physicians, psychiatrists, psychologists and even neurologists, have the necessary training and clinical experience to make a definitive diagnosis. That's why it's important to seek out a competent consultant with expertise in Tourette Syndrome.

As David has alluded to, searching for reasons to attribute Tourette can be counter productive for your son, because he can begin to feel guilt that his tics are somehow a failing on his part.

If a diagnosis is confirmed, then it's time to help your son accept his diagnosis, because it is part of who he is and part of his life and he needs to know how to adapt to social situations, interpersonal relationships and to eventual employment.

This process can be started by becoming involved with a local chapter of The Tourette Syndrome Association in your community, where your son can meet other people his age with Tourette, learn from their experiences and develop the strategies he will need to enjoy a satisfying and productive life.

 

[DsMom]

Just an update on my son and also to let you know this will be my last post on this forum.
All the symptoms my son has had back in November and December were proven to be by the medication reactions. He was having seizures back at Thanksgiving time and I want to thank the lady that suggested he was possibly having seizures, becasue he was and i had no idea.
That brought me to look into all different things rather than just touretts and tics. All this wasn't really about TS at all. What that lady posted was the best thing i read on here and again I want to thank her very very much.
My son is almost totally back to normal with very few tics and doing Great in school.
Hope everyone has a nice year

 

[Andy]

Happy to hear your son is doing well DsMom. A great way to start a new year. You have a great year too.

 

[NakedWombat]

My neurologist prescribed me Tetrabenazine and said that I'll know by the end of the second week if I would have side effects. I took myself off it as it accelerated my symptoms and had small neuro attacks on a daily basis and found myself walking around as if I had Parkinson's Disease.

 

[Retired]

I took myself off it as it accelerated my symptoms and had small neuro attacks on a daily basis and found myself walking around as if I had Parkinson's Disease.

Certainly potential side effects of this medication; however, did your doctor suggest the possibility the side effects might have been controlled by modifying the dose?