View Full Version : Update on Forums TS members and meds.


Piupau
04-19-04, 03:44 PM
How was your doc appointment today?

neuroangel
04-19-04, 08:10 PM
Hi, Piupau!

It went incredibly smoothe. He now manages my medication! He told me to call him when I start working again, then he'll try me on adderal or concerta.

He told me that he thinks I needed this help when I was a child, but that it's not too late. :)

I didn't really discuss tics with him, just because I was thrilled that he took over my medication. Now I don't have to deal with that psychiatrist who doesn't know what she's doing. I did mention "strange movements" and told him that the wellbutrin seems to make it a bit worse. He said that it's not uncommon.

I'm satisfied with the outcome. :bowl:

Cyndi

Piupau
04-20-04, 12:02 AM
Wow! Nothing to be worried about then :D Congrats to your meds. I haven't got my yet. But I'm waiting for Strattera as a first try. Concerta and Ritalin can make your tics worse...

neuroangel
04-21-04, 02:29 AM
I've heard that about stimulants, but I read a medical article online that showed a study on stimulants and tics. According to the report, it actually calms the tics in most tourette's patients. If I find the article again, I'll put a link to it here.

Strattera was my first adhd med, and it didn't work for me. Dr. Fischer (the neurologist), said it's the kind of drug that looks good on paper, but doesn't help a whole lot of people.

I've met a person who strattera in conjuction with concerta, helps him tremendously.

Good luck, Piupau!

Cyndi

Piupau
04-21-04, 03:59 PM
I'll just wait and see what works and what not. I'm driving a car at work and i don't want any meds that makes my head slow or dizzy. :)

Energizer_Bunny
05-08-04, 09:36 PM
Speaking of Wellbutrin, I am trying it again, even though that is what made my tics high moderate to severe. I am trying the XL at only 150 mgs. I am not sure what is going to happen though.

neuroangel
05-26-04, 07:58 PM
An update!

I was started on concerta a few days ago. I'm up to 36 mg and will be on 54 mg by Friday.

So now I am taking: lexapro 20mg QD, wellbutrin XL 300mg QD, and concerta 36mg QAM.

I am having a lot more tics, but mostly just when I am relaxing or trying to sleep. I'd hate to see how bad the tics would be at 54mg, in a few months from now. I'm going to stick with the concerta for two months. If it works, I'll keep it. If it doesn't really help, and only makes me tic more, then I will try adderall.

How are you two (Piupau, Energizer) doing with meds and tics?

Cyndi :D

Piupau
06-02-04, 02:39 PM
No meds, just tics for me ;) I haven't found a doc yet. I don't trust the ones where I live.

Energizer_Bunny
06-14-04, 02:02 PM
Cyndi,

From my personal experience, please be very careful with the Wellbutrin. I was in denial about having TS until my psych decided to try me on it. When he did, I came out of denial. I went from just thinking I was hyper to high moderate/severe tics.

The Wellbutrin caused a greater increase in tics in me than the stimulant ADHD meds did.

I am not sure how long you have been on the Wellbutrin, but it is something to be aware of.

I am back on it because I needed to be motivated more. I have noticed a slight increase in tics and being irritable. I am limiting myself to 150mgs.

neuroangel
06-19-04, 09:36 PM
I am guessing that the wellbutrin caused your tics to worsen right away?

I developed a few more tics on top of the ones I already had, and I tic a little more from it...but it's not severe. The stimulants seems to be making it worse.

Of course, as I said in another post, the combo I am trying right now isn't quite as bad as concerta alone or adderall alone...lower dose of the two combined isn't so bad.

Cyndi

Energizer_Bunny
06-21-04, 02:04 PM
Yes it was the Wellbutrin that made my tics bad when I first went to my neurologist in 2001. He diagnosed me high moderate/severe. Even after I got off the Wellbutrin, they continuted to get worse.

Well, I got back on it a month ago and was willing to get it a shot because I needed the motivation. I have noticed an increase in my tics. I have an appointment tomorrow with my neurologist. BOTOX DAY! Can you say OUCH?

The bad thing is that my insurance company has not completely paid for my last botox treatment. They paid for the shots to be done which is $500.00 but not the medication which is $1200.00. So I am not sure if I will be able to get my treatment or not.

I will let you know what the doc says about the Wellbutrin.

Energizer_Bunny
06-23-04, 02:26 PM
Well I ended up with about 30 shots. Face, neck and shoulders. The doctor said I have some good news for you, we have a smaller needle for the shot that they put above my lip and below my nose, in that sensitive area. It is very painful and after he did it was like oh my gosh that is so much better.

The doc is keeping on the Wellbutrin even though I am ticking a little bit more and he added a muscle relaxer called Zanaflex. He said it may help and it may not. The thing is that my tics are dystonic so I clinch my muscles, hold and squeeze until I get that just right feeling. I am basically a walking knot.

The Botox has already gone into effect and the tics are there, I just can't do them as hard.

neuroangel
06-23-04, 08:34 PM
Oh my! How do you bare the 30 shots? Is it worth it?

I've been on the Wellbutrin XL 300mg since late Febuary...you asked in a previous post. The tic increase was minimal for me.

Now the concerta/adderal combo isn't working so nicely. I feel very sluggish, and I am starting to get facial tics -- noticable ones...like twitching in my cheek, sticking my tongue out. I hope I find the right med soon.

Maybe the Zanaflex will work out for you, let me know.

:D

Cyndi

Energizer_Bunny
07-09-04, 09:03 PM
Sorry for the delay in response. I was not able to access forums for home. ISP problems.

Yes, the botox shots are worth it. Very expensive, but worth it. And I know someone who has had about 120 shots because her tics are so severe. It finally got to a point where the botox was not working and she was having to go back more often. Her insurance no longer covers it. I feel for her after meeting her several years ago.

neuroangel
09-21-04, 06:38 PM
Hi Energizer and Piupau,

It's been a while. I was wondering how you two are doing. How are the tics?

I hope your botox is still working, Energizer.

My tics have settled down quite a bit recently. :) I started a new job...on bad days, my right eye tics away, but that's about it. TTYL

Cyndi

Energizer_Bunny
09-24-04, 09:55 PM
Hi Cyndi,


Hope your new job is going well for you and glad to hear about your tics. Mine have a tendency of being worse at work as a result of anxiety, boredom, noise, etc.

The botox is doing well. I have another appointment in Oct. My last appointment was on June the 22 and I am noticing that the botox lasts about 3 months especially in one particular spot. The injection is given on the side of my nose to stop an obsessive compulsive tic which is socially not acceptable. But I paid close attention to it and realized, hey the injection idea that my doc had did work and it does wear off after 3 months.

neuroangel
09-27-04, 08:26 PM
I'm glad to hear the botox is still doing the trick! :)

So far the job is going well. I hope to pick up some private babysitting jobs from this. Untaxed money is the best kind. ;) lol

Are there any routines or activities you can do that relieves your tics somewhat? Just curious. Maybe you should try 30 minutes in a steam room if you can. It's great for the muscles, among other things.

Take care,
Cyndi

Energizer_Bunny
10-02-04, 12:53 PM
Oh wow, I never rrealized a steam room was good for the muscles. But I have asthma and I am not sure how that would work out.

The other thing about steam rooms, is that I am OCD, and they seem nasty to me with all the sweaty people in there..................

Botox again on Oct 26.

neuroangel
10-06-04, 05:00 PM
Everytime I go in the steamroom, I am the only person in there. I have asthma too, so it's really hard for me to stay in there for more than 15 or 20 minutes. As long as you breathe through your nose, don't talk, and don't take in really deep breaths, you ought to be okay.

Cyndi

charlie
10-20-04, 12:57 PM
Hi all,
Sonís tics and verbal raspberries are getting worse so that it's interfering with school learning :( This kid was darn near genius in math, now his writing and concentration is just NOT there.

I would really like feedback about WHAT types/names of meds will work with tics?
We're trying to get our GP to bump up our neurologist's appt which isn't until middle of November.

Any help appreciated!

neuroangel
10-20-04, 04:42 PM
I know neurontin helps some people. Sometimes a muscle relaxer or antipsychotic. Some of the newer antipsychotics like geodone, seroquel, or risperdal would be preferable to the old ones. (There are more side effects with old ones, so stay away from thorazine, loxapine, etc. if you can) and do NOT let him take zyprexa !!!

There are many lawsuits on zyprexa right now because it's caused diabetes and pancreatic failure in a lot of people!

Is your son on a stimulant? Maybe he should be tried on another med, if he is...

Best wishes. Let us know how it goes with the doc.

Cyndi

charlie
10-20-04, 11:10 PM
Thanks so much Angel!!!
I remembered reading a few posts that seemed to discourage taking of meds for tourettes-- it must be because of the older drugs and zyprexa that you mention. Searching forums with 'Tourettes + med' I couldn't find any specific meds:(

Seems I missed the Docs call today. But we'll keep trying.
Ok I always have to search online for negatives and of course feel the need to share:) following are results mainly from crazymeds.com:

Neurontin: people in one study referenced found Neurontin (gabapentin) to aggravate OCD and doesn't do squat for anxiety...another study reported above 1,200mg a day memory becomes too bad for to function normally

Geodon
get an EKG before taking, there's a nice sudden death warning for prolonged ... can mess with your heart ...can aggravate, or even induce mania in bipolar, especially when combined with an antidepressant
rare side effects: bed wetting, involuntary rotating of the eyes

Seroquel frequently prescribed in low doses just to combat insomnia, antagonizes a lot of histamine receptors and doesn't do much in the dopamine department

I bet this will be the one!
risperdal first medication officially approved to treat autism in adults & children. OCD, depression, tourettes. Typical side effects-headache, nausea, dry mouth, sleepiness and lethargy or insomnia and way too much energy. can also mess with how you process sugars (but better than Zyprexa or Seroquel)
Signs of needing to lower your dosage or switch to another antipsychotic: be on the lookout for Extrapyramidal Symptoms (http://www.hubin.org/publicfamilyinfo/treatment/side_effects/side_effects_6_en.html) (EPS) especially Tardive Dyskinesia (http://web.nami.org/helpline/tardys.htm). -- twitching, kicking, jerking, or in any way any part of you moves and it wasn't your idea - and it happens more than once - it's time to call your doctor. Just don't freak out. Rather, you have reason to calm down. None of this stuff is permanent. Not with the new meds. It's all a matter of lowering your dosage, adding another med (what fun!) or switching to another antipsychotic


ps all I read about the following ongoing tourettes studies @
University Health Network Toronto, Canada
If you wish to enquire about any of these research projects, please call (416) 603-5794 or fax (416) 603-5292, attention "Regi."

Genetics of Tourette's Syndrome
C. Barr, P. Sandor

A study of families with at least two children who have Tourette's Syndrome.
A clinical assessment and a blood sample are required from each child and both parents.
Time commitment: one visit approximately one hour/person.

Functional MRI of tics in patients with Tourette's Syndrome
P. Sandor, S. Lafaille

Children and adults with Tourette's Syndrome who are able to remain motionless for 15 minutes while in the MRI machine (no radiation is involved).
One visit for diagnostic interview about 1 hour and one visit for MRI also about 1 hour
Thanks again I really appreciate it!

neuroangel
10-21-04, 08:04 PM
You're quite welcome, Charlie! I'm glad to be of some help. :)

Watch your son's appetite if he takes risperdal. My room mate is on it and she eats like a pig...of course, she may have eaten like that before the med, I'm not sure. lol.

Cyndi

charlie
11-03-04, 10:11 AM
Morning all
Hope it's ok I keep posting on this thread
the title just calls to me
have neurologist appt for son today, interesting to see if neurologist will be knowledgeable about OCD/tourettes and what tests he may be put thru
Gotta go or will be late
Thanks for all the great support you all have helped me thru this so very much. As his symptoms/tics have only increased three-fold in only a couple of months it's made his life so much easier not to be teased and bribed to 'just stop it'- at least here at home.
wish us well!

neuroangel
01-09-05, 02:25 PM
The Latest Update:

My left thumb keeps twitching, and there is a muscle somewhere between my spine and the outer part of my ribs, that keeps twitching. That was a relief to find out though, I thought I was having severe palptations or something serious like that. I pretty much stopped the 'barking' but I still make little humming sounds. hehe. Overall, better than I was.

I am going back to college! I am taking critical reading and intermediate algebra. The bad news is, I can't afford my ADD meds. Oh, the joys of being 21!

I sub at the club time to time, and I have a private babysitting job a couple days a week now. He'll be 1 on Febuary 25th. So cute!

How have the rest of you been?

Cyndi