Tourettes

[Guest Jim Brims]

I am 53 years old and have recently been diagnosed with Tourettes Syndrome. For myself the tics are not the greater part of the problem; they are unnoticable to most people, including my ex-wife of 27 years. It is the way my brain clears of cognitive ability, memory and emotion at times of stress; sleep disturbance, and what seems to be the release of adrenaline at inappropriate times.

 

Has anyone got any advice for me? I shall happily answerall e-mails to:

jimbrims@lineone.net.

 

May I take this opportunity to thank the organisers of this forum very sincerely. Thank you.

[Sheila]

Jim--please watch for an email from me. Sheila

[SSRI Reactor]

Jim,

 

For me, staying off medications and away from their side effects has been key to my mental health. I have been really loused up in the recent past from the various drugs prescribed to me (haldol, pimozide, zoloft, etc). It's as though my physicians were throwing me bricks as a life preserver.

It feels good to get my head clear in order to better understand my symptoms and condition.

 

I too feel that the tics are not so much an issue as the anxiety and mental clouding I feel when I am in the "tic zone". I'm trying to get through graduate school (at the age of 54). It's quite a challenge to sit in class, take notes through long lectures, and just to be in such a stressful environment.

 

As I too am a newly diagnosed adult with TS, I'd appreciate hearing your story. I wonder if some emotional trauma or medicines might have been a trigger for your TS. As well, I'd appreciate knowing if you experience the classic "premonitory urges" to tic, or if unpleasant thoughts trigger your tics. These happen to be part of my experience. I hope to hear from you.

 

Best wishes.

[Dr_Robbins]

Jim,

 

Your problem could be related to the "adrenochrome hypothesis"proposed by Abram Hoffer, M.D. who wrote a book on Orthomolecular Medicine.

He proposed the use of Niacin for many with these cognitive difficulties.

If you do try niacin begin with very low doses and slowly increase the dosage over a period of weeks. It is a miracle vitamin (B3) for some people.

 

You should also have a nutritional blood test, an evaluation for hypoglycemia, and an evaluation for hidden infection, thyroid disorder, and hidden allergies.

 

Check out Dr. David Perlmutter's website and book BrainRecovery .com and his brain nutrient powder called Brain Sustain.

[Guest Julie]

I am very new to this site and this information. I am so thankful to finally feel some hope for my 6 year old loving boy. However, I find myself still lost and overwhelmed at what is happening to my son, and what to do about it. Everything I am trying is making him worse. I need a pediatrician who understands, is informed, and treats with these alternative methods, a child-psychiatrist(?) who is not ambiguous and views meds as only method of treatment. I don't know how to go about providing a diet for a 6 year old boy who goes to birthday parties and likes all the things that may be linked to some of his problems. I read Jim and Roger's message and I was intrigued by the cognitive confusion that takes place prior to tics, almost like mental tics. I watch my son and think there is something to this. Now to explain my son as concisely as I can. Aaron has had milk digestive problems and skin allergies to soap since infancy; He had colic as well as high fevers almost each month and on constant antibiotics from 4 months until almost 4 months when he had tubes placed in his ears. He seemed hypoglaucemic as a toddler and presents with it now. He has been diagnosed with sensory integration disorder as sensory seeking with ocular and vestibular issues. He presents as hyperactive out of glee rather than aggression and has a terrible time with directions. We finally started him on Adderall fronm his pediatrican's recommendation- now he has gone down hill. Two weeks into Aaderall he developed full blown Parkinson symtons with tremors and facial tics mostly to the mouth. Thumb constantly rolling over his fingers with mouth tics so active, his tongue starts hang down and out of his mouth from exhaustion. He stops Adderall abruptly and had two horrible days of hyperactivity, loud vocal screaching tics and mood swings. Now, he is on tenex, 1 mg daily- pill is now split into 1/4ths because he is extemely tired, and having vivd bad dreams. He is no longer zestful, and I miss his smile. He has a IQ of 127 and is on a teaball team. By the end of this year the kids will notice his tics. Please help me help him. My instinct says to take him off of all meds. What do I do next? Is there anyone out there whom can enlighten me?

 

Thank you,

Julie, adoring mom of a beautiful boy

JuWabilsky@aol.com

[Guest Julie]

corrections for Aaron: he was on antibiotics from 4 months to almost 14 months.

Questions about Aaron: Will these tics go away? Will this get worse?

Note: We tried one day of wellbutrin and his tics increased.

Thank you, Julie

[Guest Guest_Debbie]

Julie -

I'm sorry to hear you've had such a difficult time with your son. I have an 8 year old boy with Tourettes. His tics don't seem to be as significant as your sons, but I can sympathize with watching your child go through this. I've been in tears many times watching my son jerk his head from side to side, friends asking why "he does that", etc.

Our neurologist recommended Adderal, but I was afraid to give any medication. From what I've read, while some meds can address focus and concentration (my son also has ADD symptoms), they can increase tics. Sounds like this is what happended to your son.

I was able to find a nutrionalist that fully believes, as I do, that TS has something to do with allergies, chemical imbalance, food intolerance. We just started on a vitamin/supplement routine, about 3 weeks ago, and my son's tics have reduced by at least 85 percent. I don't want to speak too soon because his tics do wax and wane. We have not seen any relief on the ADD symptoms, though, so perhaps we will need to adjust the formula.

I would suggest you read all you can about TS. The internet is a great resource. Be cautious of information on relief of TS symptoms when it's tied into the sale of some supplements. I'd suggest you try this site to get some info on what other's have done and are doing to address TS:

neuro-www.mgh.harvard.edu:16080/forum/

You can go to the Tourettes board and learn plenty. It can be overwhelming to read about supplements - some people are so well educated that I'm blown away by the data. But I work through what I can.

There is hope for your son. I've read that it's not good to just go cold turkey off meds - you probably should do it a little at a time.

I'm also working through tests with my son - metal levels in blood, hair analysis, vitamin panels, etc. This is all part of my nutrionalist's plan to determine what is causing the problem. I'd be happy to talk with you any time. I'm no expert, but I feel like I'm making progress.

Best to you and your son.

Debbie

P.S. Keep in mind that while pediatricians and neurologists can be wonderful doctors - they are not trained to search for the cause. Their practice is to treat symptoms.

[Guest Dee]

Hi!

I have an 11 yo son who has tics. I have talked to two different physicians who tell me that the medications available are too dangerous. We tried him on ambrotose and his tics went almost completely away. He would have breakthrough tics every now and then when he was extremely tired and or stressed.

 

He forgot to tell me that he was out of ambrotose and the tics are back with a vengeance. Now he has this frequent facial grimace that is very noticeable. We put him back on the ambrotose, but it hasn't helped. It has been a few weeks.

 

So, maybe the ambrotose did nothing and it was just one of those times when the tics wane. I don't know. My husband didn't want to discontinue the ambrotose before because he said it might be helping. I am a scientist so I am usually skeptical about untried treatments, but I find that I am willing to try anything to help my son.

 

I have been told that tics get worse in adolescence. He is almost 12 and I see signs of maturation already. I am at a loss as to what to do now. Should I take him to a neurologist? My physicians say the tics bother me more than my son and that I need the drugs. And I guess they are right. I do ache for my son.

 

Dee

 

tmurphys52@yahoo.com

[placebo6]

Dee, I also have an 11-year-old with Tourette's and it is so painful for me to watch him endure the teasing and humiliation from his peers. He was born with bacterial menengitis, which I have read on some Tourette's sites could have been the cause. As he approaches 12, his tics and grunts are getting worse. We refuse to give him drugs and the herbal remedies have done no good. In checking out some licensed massage therapists yesterday, I was informed of a recent article on Neuro-muscular massage therapy for treating Tourette's. Apparently, massage is getting some wonderful results. Has anyone heard of this type of treatment and/or biofeedback for treating Tourette's? Tried the Neurologist, who recommended drugs but said they wouldn't stop the tics. Tried a psychiatrist before that, who didn't recognize Tourette's and was rather harsh with him -- making his symptoms worse.

 

Jeannie

[Bailey]

 

Hi I just found the Latitudes website and I am positively overwhelmed and equally encouraged by all the data. My son is only eight years old. He has always had some sort of a vocal tic such as some humming or wheezing since he was an infant. My husband has some slight vocal tics such as smacking that is so slight that he and I are the only ones that really notice it. When I was an adolescent I began head nodding and neck twitching. Now all I have is occassional neck twitching that I hide very well with wearing turtle necks. My child's ticcing behavior began with a vengeance last Christmas with vocal tics. A year later he is now having ever changing simple motor tics. His vocal tics continued. He is being taunted in school and my heart aches for him. He told me the other day that he doesn't want to go to school when the kids told him that he should'n't be in the school play because he would ruin it with his vocal tics (throat clearing sounds) I have noticed that his tics wax whenever there seems to be something exciting or eventful occurring. Then it takes weeks before they wane. Except for the tics he is otherwise a very positive, humorous , healthy and happy child. When he was born he had WPW and had to take a potent heart drug called Flecaniade for the first three years of his life to control rapid heart beat. IS there a connection or is it more likely he got whammed with his parent's genetic predisposition? Caffeine is cut out and watching his sugar intake are the diet methods. This has not had a big impact on the tics. I have not noticed any other correlations to the tic behavior other than excitement triggering episodes. What can I do with an eight year old child not to let him get excited about happy occasions!? He was on Paxil for a year and this has not helped much. I finally relented and he just started taking Clonidinezz(.05) daily dose this week because of the pain of ostracism he was experinecing in school. Also , what does Dr. Robbins degrees mean , I have never heard of a dr. in his degreed areas? Thanks in advance for your feedback , it is just so worrisome what he is going through and never knowing if this condition will progress much worse! Bailey

[Sheila]

Bailey--how is the Clonidine working for your son?

 

Re: your questions, Dr. Robbins is an osteopathic physician (Doctor of Osteopathy). The MSPH is for Masters in Public Health.

 

DOs in the States take the same medical boards as MDs. Originally there were more holistically oriented (many still are) but many others can't be distinguished from MDs in the way they practice. The criteria is a bit different in the UK. Preventive medicine is just what it sounds like--promoting wellness to avoid illness. And environmental medicine is a type of medical approach where MDs and DOs focus on finding causes for illness rather than just treating symptoms, and they use therapy beyond drugs.

 

It's good that you have kept him off caffeine and reduced sugars but since you haven't seen much change, you could consider other interventions. Am sure by reading some of these posts you have some ideas. A professional specializing in complementary therapies can also help.

 

Many parents contacted us that their kid's TS got much worse around the holidays and they didn't think it was excitement as much as the junk they were eating. Did you find that? (But you are right, excitement can be a big trigger, as you say, and you don't want to can't take away fun activities!)

Sheila

[chele]

Julie -

I'm sorry to hear you've had such a difficult time with your son. I have an 8 year old boy with Tourettes. His tics don't seem to be as significant as your sons, but I can sympathize with watching your child go through this. I've been in tears many times watching my son jerk his head from side to side, friends asking why "he does that", etc.

Our neurologist recommended Adderal, but I was afraid to give any medication. From what I've read, while some meds can address focus and concentration (my son also has ADD symptoms), they can increase tics. Sounds like this is what happended to your son.

I was able to find a nutrionalist that fully believes, as I do, that TS has something to do with allergies, chemical imbalance, food intolerance. We just started on a vitamin/supplement routine, about 3 weeks ago, and my son's tics have reduced by at least 85 percent. I don't want to speak too soon because his tics do wax and wane. We have not seen any relief on the ADD symptoms, though, so perhaps we will need to adjust the formula.

I would suggest you read all you can about TS. The internet is a great resource. Be cautious of information on relief of TS symptoms when it's tied into the sale of some supplements. I'd suggest you try this site to get some info on what other's have done and are doing to address TS:

neuro-www.mgh.harvard.edu:16080/forum/

You can go to the Tourettes board and learn plenty. It can be overwhelming to read about supplements - some people are so well educated that I'm blown away by the data. But I work through what I can.

There is hope for your son. I've read that it's not good to just go cold turkey off meds - you probably should do it a little at a time.

I'm also working through tests with my son - metal levels in blood, hair analysis, vitamin panels, etc. This is all part of my nutrionalist's plan to determine what is causing the problem. I'd be happy to talk with you any time. I'm no expert, but I feel like I'm making progress.

Best to you and your son.

Debbie

P.S. Keep in mind that while pediatricians and neurologists can be wonderful doctors - they are not trained to search for the cause. Their practice is to treat symptoms.

[Chemar]

Hello Chele and welcome

 

your post only shows the quote and not your own words....may I suggest that you use the "ADD REPLY" button (bottom right next to New Topic button) as that seems to be most effective for posting replies on threads.

 

It was interesting to see this old thread bumped up too......hoping all those members from 2002/2003 who are no longer active here are doing well

[Andy]

Jim,

 

Your problem could be related to the "adrenochrome hypothesis"proposed by Abram Hoffer, M.D. who wrote a book on Orthomolecular Medicine.

He proposed the use of Niacin for many with these cognitive difficulties.

If you do try niacin begin with very low doses and slowly increase the dosage over a period of weeks. It is a miracle vitamin (B3) for some people.

 

You should also have a nutritional blood test, an evaluation for hypoglycemia, and an evaluation for hidden infection, thyroid disorder, and hidden allergies.

 

Check out Dr. David Perlmutter's website and book BrainRecovery .com and his brain nutrient powder called Brain Sustain.

 

 

I know Dr. David Perlmutter. He is great for alternative diet testing and believes in feeding the brain.

My oldest child was under his care for close to 2 years.

[butterbean]

Jim:

 

As a parent of a 6YO with newly diagnosed TS, I have suspected and seen evidence in my child to support that a the tics are only just one symptom of this condition and not reveal the ENTIRE nature of the situation. Although TS is defined by the tics, the things that are of greatest concern for me are not the tics. My daughter at times seems emotionally detached. She doesn't seem to concerned with others feelings. It is not just immaturity, I believe. She has intrusive thoughts at times and "knocks" on her forehead to "stop thinking things" that disturb her. This happens at times when she is tired.

 

Apparently the TS runs in my husbands family. I can say that at times he (and his father too) can seem emotionally unavailable. It's annoying, but I try to overlook it because it is not all the time. Rather than a void of cognitive thought, my husband has the opposite -- he obsesses about intellectual thought, taking a topic through a string of possibilities. That is interesting and fun for him, so it's not a problem - but I believe it is part of the OCD-type symptoms that can accompany the TS.

 

Hope that helps and you can relate to some of this.