My giant list of medication research is now online

[guy123]

Don't make fun of the poor design. I was in a hurry to get this information online and I haven't gotten the layout to be perfect yet.

 

The list is still being updated but most of it is there now.

 

http://www.tourettestreatment.com/

[Caryn]

Wow,

What a fantastic resource, all on one page, easy to navigate. You did a great job with this. I will link to it from my blog forum as well. Many folks will get advice from a neuro and will also get a certain brand of drug as a possible script (In our case the doc suggested Topamax.) We opted to go the natural route instead but a site like this would have been great for us to discover at that time. We had a very young child at onset (3 1/2) and were frightened about side effects.

Thanks a mill for the efforts.

 

p.s. a little something about natural treatments would also be nice----

[guy123]

Wow,

What a fantastic resource, all on one page, easy to navigate. You did a great job with this. I will link to it from my blog forum as well. Many folks will get advice from a neuro and will also get a certain brand of drug as a possible script (In our case the doc suggested Topamax.) We opted to go the natural route instead but a site like this would have been great for us to discover at that time. We had a very young child at onset (3 1/2) and were frightened about side effects.

Thanks a mill for the efforts.

 

p.s. a little something about natural treatments would also be nice----

 

Thanks.

 

I'm not totally happy with the appearance of the site but I guess it will suffice for now.

 

I was considering adding sections on tic triggers and natural treatments. The only thing is I haven't seen many (any?) documented studies about natural treatments (obviously, as it's not profitable for pharmaceutical companies). First I have to finish filling in all the empty cells in my charts, however

 

I'm trying to remain neutral and present information, and not say that one treatment is better or worse than another. Hopefully readers will be able to use the info (as well as info on other sites and from their doctors) to decide which treatment is best for them.

[patty]

guy123,

 

Thx for your effort in putting such useful info.

 

Pat

[AHB900]

guy123,

 

Thx for your effort in putting such useful info.

 

Pat

 

 

Very nice info thank you for putting that together. Just a suggestion how about some natural treatments such as supplements etc. Those medication side effects really scare me, some are horrible.

[guy123]

Very nice info thank you for putting that together. Just a suggestion how about some natural treatments such as supplements etc. Those medication side effects really scare me, some are horrible.

 

Some of them aren't bad. Clonidine and Tenex don't have too bad of side effects... drowsiness, dizziness, headaches, loss of libido sometimes.

 

It's the neuroleptics and stuff with the bad sides.

[AHB900]

Very nice info thank you for putting that together. Just a suggestion how about some natural treatments such as supplements etc. Those medication side effects really scare me, some are horrible.

 

Some of them aren't bad. Clonidine and Tenex don't have too bad of side effects... drowsiness, dizziness, headaches, loss of libido sometimes.

 

It's the neuroleptics and stuff with the bad sides.

 

 

those are still had side effects especially if you drive alot what if your on the free way and u get this sudden dizziness

[guy123]

those are still had side effects especially if you drive alot what if your on the free way and u get this sudden dizziness

 

My point was that dizziness and headache side effects that go away as your body adapts to the medication are a million times better than permanent movement disorder side effects that don't go away even after you stop the medication.

 

But yes the drowsiness can suck. One night a few weeks after I started Clonidine I was driving to my gf's place (I hadn't even taken my pill yet that night) and I got a MASSIVE drowsiness attack in the car on the highway. It was pretty scary. But that was before my body adapted. I actually reduced the dosage since then, too, and I don't have drowsiness issues anymore.

[AHB900]

those are still had side effects especially if you drive alot what if your on the free way and u get this sudden dizziness

 

My point was that dizziness and headache side effects that go away as your body adapts to the medication are a million times better than permanent movement disorder side effects that don't go away even after you stop the medication.

 

But yes the drowsiness can suck. One night a few weeks after I started Clonidine I was driving to my gf's place (I hadn't even taken my pill yet that night) and I got a MASSIVE drowsiness attack in the car on the highway. It was pretty scary. But that was before my body adapted. I actually reduced the dosage since then, too, and I don't have drowsiness issues anymore.

 

 

Oh i did not realize your body adapts to it... thats good

[Chemar]

Oh i did not realize your body adapts to it... thats good

 

neither my husband nor my son ever "adapted" to the bad side effects of the meds they were on. My son was on them for a whole year and things just got worse, not better

 

my husband was on the clonidine for about 6 weeks and it had made him psychotic. As soon as he stopped it was like a miracle switch had been turned off and he began to "be himself" again

 

the bad side effects of the meds for them was a zillion times worse than the tics

[Char]

guy123,

Hi, Just wondering how the meds are working for you? Are your tics any better on the meds? Do you see any side effects anymore on the meds? Thanks for posting meds treatments, It's great for people to look at all their options!! Char...

[guy123]

guy123,

Hi, Just wondering how the meds are working for you? Are your tics any better on the meds? Do you see any side effects anymore on the meds? Thanks for posting meds treatments, It's great for people to look at all their options!! Char...

 

Hi,

 

I'm still on .025mg Clonidine (1/4 of a .1mg pill) per day, taken nightly. My tic is noticeably better the majority of the time, but occasionally I have bad days (equivalent to how it was before I started the medicine).

 

I was originally on .05mg (1/2 of a .1mg pill) nightly, but I was having the following side effects:

 

- Dizziness upon standing

- headaches (went away)

- eye aches (went away after the first week)

- drowsiness (sort of went away, but not entirely)

- loss of libido and difficulty getting/maintaining erection

 

Mainly because of that last bullet point, I cut the dose down to 1/4 pill. I do feel I had a slight "rebound exacerbation" for a few days as my body adjusted to the lower dose, but the difference in libido and ability was immediate. That was a few months ago, and now I've adapted to being on 1/4 pill. Obviously my tic isn't gone, but it's better than without the medicine, and I don't have any noticeable side effects anymore (occasionally I will get dizzy if I stand up too fast).

 

The normal starting dose for Clonidine is .1mg (the whole pill). Since I had such bad side effects on half a pill, I wouldn't want to even try a whole pill!!! I told my doctor that I cut it down to 1/4 because of the side effects and he was cool with that.

 

Oh yeah, my blood pressure lower now, too. lol. I never had high blood pressure to begin with, but last time I took it (a few days ago) it was 111/68 or something. Clonidine is a blood pressure pill (that's why you get dizzy if you stand up too fast).

 

Re: Chemar's post:

 

Sorry your husband and son got the psychotic rage side effect. That seems quite rare. But at least it went away when they stopped the pill (as opposed to some of the neuroleptic side effects that don't go away). Did they ever try Tenex?

 

As for me, I plan to stay on Clonidine indefinitely, either until I have to come off for some reason, like adaptation (in which case I plan to stay off it for a while, return to "baseline", and then begin again), a better drug being invented (tic free with no side-effects super pill!) or until some new medical technology can "cure" me (stem cells or nano-technology or something). You know, that might be occurring sooner rather than later. They are making some good stem cell progress, such as Prochymal with Crohn's patients.

 

Or maybe I just watch too much Star Trek where a hypospray and little computer band on your forehead can repair brain damage/injury at the cellular level in a matter of seconds

 

Seriously, tho. Stem cells should be able to knock out Tourettes, Parkinsons, Alzheimers, ALS, and Crohns. Go medical science, go!