Essential Info on Prescription Meds

[Chemar]

Hi everyone

 

Most of the regulars here know that I am VERY wary of prescription drugs for neurological issues . This attitude comes from nearly LOSING my son because of the serious side effects that he suffered from these drugs. I was NEVER warned by his physicians about the dangers, only told he needed the drugs to "live a full life" and when my initial response was hesitant (we have always been a naturopathical family) I was treated like a bad parent and even intimidated by being told I was not acting in my child's best interest!

Well, I should have trusted my instinct and done my research more thoroughly before ever allowing those drugs to do such damage to my child!

 

Thankfully, when he nearly died after being put on yet another drug, I had the courage to say enough! no more!! and now, four years on, my son is living a very full life, minimally impacted by his TS/ADD/OCD etc and healthier than he has ever been.

 

A discussion on another thread got me thinking that we really have a need here to have an informative thread about "brain drugs" aka psychiatric medications.

 

I will be very much coming from the anti med position, based on our experience and that of numerous people that I have had contact with, either personally or here in cyberspace.

But

if anyone wants to add any positive comments about how any meds have helped them, PLEASE DO....it is always good to have a balanced view in order to be fully informed.

I also invite all who have any other info on meds, positive or negative, to join this discussion.

 

So

 

here is my first contribution:

 

a superb website by Dr Peter Breggin, a long time advocate for restrictions in the use of brain drugs, especially in young people

 

http://www.breggin.com

 

and

the list of books by Dr Breggin (Your Drug May Be Your Problem is excellent in that it gives detailed info on all the psychiatric drugs and their potential side effects, as well as clear info on withdrawing from them)

 

http://www.breggin.com/prbbooks.html

 

I would also like to link here to a long and very detailed thread at BrainTalk compiled by Mrs Doubtfyre, who is not only a medical professional, but also one of the most knowledgable and helpful people re alternative treatments, as well as the potential hazards of medications. Those who visit BrainTalk know that Mrs D as she is affectionately known, is a mainstay of many of the Forum's there

 

http://brain.hastypastry.net/forums/showth...read.php?t=2441

 

 

The drugs that my son tried and had severe side effects from were

Haldol, Luvox, Naltrexone and Zyprexa.

 

 

Here is also a very good link to the Health Encyclopedia at iHerb, where you can look up almost all vitamins, minerals, herbs and other supplements, and also find information on their known interactions with some of the prescription meds

 

http://www.iherb.com/health.html

 

 

I hope that this thread will gow into a balanced and informative resource for all who want to know more about prescription meds used in neurology.

 

[Claire]

Great thread Chemar,

 

And good to continue to bump up for newcomers.

 

I saw a study Tardive Dyskinesia and thought I saved the link, but didn't--it is a possibly permanent side effect of many prescription drugs. Here is what a quick search showed:

 

http://www.tardivedystonia.org/whatis.html

Tardive Dyskinesia is thought to be the result of prolonged treatment with neuroleptic (anti-psychotic) medicines. Tardive means "late"; dyskinesia means "movement disorder." The symptoms range from occasional to continuous, and from barely perceptible to blatant. *****Long term studies have determined that TD develops in 15 to 20 percent of the patients taking anti-psychotic drugs for several years.****

 

from the NIH--a very respected MAINSTREAM medical government research group.

What is Tardive Dyskinesia?

"Tardive dyskinesia is a neurological syndrome caused by the long-term use of neuroleptic drugs. Neuroleptic drugs are generally prescribed for psychiatric disorders, as well as for some gastrointestinal and neurological disorders. Tardive dyskinesia is characterized by repetitive, involuntary, purposeless movements. Features of the disorder may include grimacing, tongue protrusion, lip smacking, puckering and pursing, and rapid eye blinking. Rapid movements of the arms, legs, and trunk may also occur. Involuntary movements of the fingers may appear as though the patient is playing an invisible guitar or piano. "

 

Like Chemar, I too hope that others who have actually used the drugs will post their experiences. In spite of the fact that people on this site mostly look for non-drug solutions, we are more in the search for 'truth' to help our kids--so if some drug cured all your child's tics with no side affects, please do post. And if they either didn't work or had side effects, please post too.

 

The idea is to have a great reference thread for parents with recent TS dx to make an informed decision --after hearing both sides---on whether to put their child on prescription drugs.

 

 

Claire

[Guest jc]

Hi Chemar, Claire

 

Well I have to admit that I am really a green horn in this area, in fact many facts about health supplements for TS and the side effects of drugs that I know of now comes from you. So I guess most of what I know, you already know.

 

After taking haldol for half a year, my son began to develop tics that resemble very much like tardive dyskinesia - abnormal movements on face, fingers and feet. So I decided to stop the medication gradually and hey, we did it in a month's time. Now my son is back to his bubbly self, and I am free of the guilt that I was giving drugs to my son and I dont have to worry about my son developing TD or etc. Now my son still has facial tics but not as frequent as when he was on haldol(which is normal). But he is taking his health supplements faithfully every single day (and I will see to that he does)!

 

I just want to take this opportunity to sincerely thank Chemar and Claire and all others who have contributed in this forum because I have learnt alot from you and the links you share with us is very helpful. Really appreciate your efforts.

 

Warmest Regards

jc

[Claire]

Hi jc,

 

Thanks for the kind words and for sharing your information.

 

Actually, unlike Chemar, I personally know very little about drugs other than what happened to Chemar's son and the TD risk--even the TD I only know from a research report. I never knew that your son started to get it, how scary for you.

 

In any case, this thread isn't for us (though we are very interested), but a central source for newcomers who are researching drugs, or who have just started drugs and want more information.

 

That is such good news about your son and his bubbly personality. I know I couldn't ever bear to watch my son's personality be altered in any way--but I know we are all trying to do what we think is best.

 

Good luck with your path with your son on alternative approaches. The journey has its trials and set backs, but we are all here for eachother.

 

Claire

[Chemar]

Thanks jc I am so very delighted to hear of your son's improvement since coming off Haldol

 

After my son's experience on the meds, I went thru the most awful time of guilt and self-recrimination for having allowed that to happen to him.

 

Then, one day, while in thankful prayer for his recovery and for finding the "natural" path to help him, I felt that I was meant to share our experiences openly so as to be able to use them to help others. I prayed then that God would bless that outreach.

 

So to read your words of encouragement truly is an answer to prayer for me

[LuluGirl]

Here's our brief, traumatic history with prescription drugs. My 10 year old son was put on Lexapro to "slow down the adreneline in his brain" which was "causing his ADD issues". I put that all in quotes because other than our doctor (a "specialist" in that area) I have yet to meet **anyone** who's ever heard of this correlation.

 

Anyway he was reacting beautifully to the drug for 6 months (grades way up, very compliant) and then suddenly, he got tics and a horrible case of OCD. Our doctor, unbelievably, said to increase his dose, and unbelievably, we did. Everything just went worse from there. It was literally painful for me to watch him. We weaned him off the drug and for the most part, the OCD subsided. Now, 8 months later, he still has tics but they are minimal due to supplements, diet, etc. In the Lexapro insert, it said that less than 2% of the people taking the drug would experience tics.

 

As far as his ADD, guess what? All he needed was a **tutor**. Makes me completely sick that I did that to him out of ignorance. However, on the bright side, we have really learned alot about his body and what affects it. I'll never do that to him again.

 

Lulu

[Ronnas]

Great thread Chemar!

[Beata J]

Hello everyone

I am one of the confused parents that don’t know what to do. I’ve researched options other than medication, but didn’t pursue it. My son was taking Tenex for about year and ½ and it just didn’t work as well anymore. He was in such condition that he couldn’t function with his eye blinking and rolling up, weird trunk movements that in desperation I put him on Abilify in addition to Tenex. The starting dose is 2.5 mg, a dose for a 5 yr old child, he is 13, 5ft. 6 and within 24 hrs the tics were gone! He felt great. He is participating in a study and his blood is drawn every 3 months to see if there are any changes, height and weight is taken. So far no weight gain and no side effects. The possibility of TD scares me to death, but I don’t know what to do. I have another child with cerebral palsy and between all of them it is very overwhelming. My son feels good, he doesn’t want his tics to come back. He used to be very hyper and now he is calm, serious. I don’t know if this is his personality or the medication. He’s becoming a man and it is hard to tell. How do I take this med away? I just don’t have the courage to do so.

[Claire]

Hi Beata,

 

So it sounds like the Ablify is working for you, and the only 'risk' is unknown side effects. I would research TD if I were you and find out if it is reversible if caught early--that might give you peace of mind.

 

Middle school is a tough age--tics definitely can interfere socially. If you are serious about alternative methods, you could consider weaning him right before summer starts, to give you the summer to try other treatments, in case the success was limited.

 

Here is the catch: From this board's experience, the pre-teens/teens are the most resistance to the elimination of triggers. So you might wish to discuss this in advance with him.

 

Also, previously you looked at DAN doctors--did you pursue any? Maybe you can undergo the testing while he is on Ablify. If he has some of the issues, e.g. elevated mercury, your DAN doctor would know if they could be treated while on Ablify. This way, maybe he won't need Ablify for the long term. It might 'get him through' while you work on natural methods. Certainly certain supplements might interfere, but a doctor would know this and could guide you.

 

Good luck. Maybe your son is lucky in that the Ablify is okay. But it still doesn't cure the underlying immune issues--if they exist. Only testing will tell you this. If they don't exist, then maybe this is okay for you.

 

Claire

[iladvocate]

Look I have tardive dyskinesia in advanced forms. Its as severe as Parkinson's in me and I am homebound and without treatment it would be fatal (respiratory spasms, dystonic convulsions, dysphagic choking epidoses). I am also under study for tardive psychosis. It is rare that it gets this advanced (I may have been more suseptable as I had unusual movements as a child although a CT scan was done and it was normal, MRI's didn't exist then) but tardive dyskinesia is not rare at all. But it must be caught in time to prevent it from becoming as adavanced as in me as unchecked it progresses. I will quote the standard clinical studies my psychopharmocologist has told me about. The rate of tardive dyskinesia occurs at the rate of "5% per per person per year among typical antipsychotics" and "1%-2.5% per person per year among atypical antipsychotics" and "it can be masked while it is occuring" and (at those statistical rates) "everyone gets it. It depends how bad it is". That of course is among all antipsychotics (and other medications including Tradazone) except for Clozaril (the sporadic cases of tardive dyskinesia among Clozaril are statistically rare, but it cannot be tolerated by many people (including myself) because of its dangerous side effect profile but it remains an option for some. As for the information he gave me on tardive dyskinesia if people have concerns I've asked him for the exact studies he cited and he is going to provide them to me but I don't want to bump a thread to scare people off antipsychotics who need them, just for people to know the facts.

Now as a person with schizoaffective disorder I needed an antipsychotic. I do think that I should have been monitored better for tardive dyskinesia but the way it emerged (nocturnal tardive myoclonus and what they are identifying as tardive psychosis) are extremely rare and almost impossible to identify. Thus the purpose of the study to identify it and change the person's medication before it gets this bad. When it is just a series of facial grimacing it can reverse itself (its becoming increasingly doubtful that Clozaril reverses it, the brain however if not damaged can heal itself even from minor strokes). However, a person who has schizoaffective, schizophrenia or bipolar with psychotic features needs an antipsychotic. For Tourrette's by itself (sometimes psychiatric disabilities accompany it that may require an antipsychotic) I don't reccomend an antipsychotic. But of course there need to be antipsychotics that don't cause tardive dyskinesia. There are. They are in development. They are called glutamate antagonists (technically NMDA receptor modulates). I have been identified as making a full recovery from glycine, a Phase II glutamate antagonist in FDA study. I take it as a primary antipsychotic but since in the official study it was used as an adjunct when my psychopharmoclogist presented it to a major provider agency (cannot detail as its confidential until they make a public statement) they stated they would reccomend to psychiatrists to use it as an adjunct. But the Eli Lilly study drug LY2140023 will be used as a primary antipsychotic (once again glycine is a study compound, not a natural remedy and must be administered under the care of a psychiatrist). The fact that I made a full recovery with glycine and am under study for tardive psychosis was noted by my psychopharmocologist to the director of the APA. When the study is published and public statements are made I will make them available.

Now back to Tourrette's. Years ago before being diagnosed with schizoaffective I thought I had Tourrette's but that was a self diagnosis that was incorrect. Now I have (among many other variants of tardive dyskinesia) tardive tourreticism. I am on Tenex and its extremely helpful (for all the tardive conditions) and although less effective than Clonidine, far more tolerable. Tenex being an alpha blocker does drop blood pressure but it has a mood stabilization effect and it is good to promote sleep (during the day I may need to rest it off though, its sedating). It does increase my appetite and lower my sex drive. As for another alpha blocker Tizanidine that caused suicidal ideations and I had to get off that quickly (though I did it the wrong way and got heart arrythmia, the alpha blockers must be titrated off slowly). Clonidine in patch form is the old stand by and very useful but it increased my appetite to the point where I gained a fair amount of weight, practically lost my sex drive, had personality changes ranging from depression to an agitated mixed state (thus why its rarely used as a mood stabilizer) and had extreme blood pressure drop. As well the patch itself burned my skin. However, for some people with Tourrette's it is effective and tolerable (I've known some people who did well) so it depends but it has a poor side effect profile. I take a variety of other medications and a natural remedy but they are for tardive dyskinesia from the medication Zofran to Klonopin (Klonopin is useful on Tourrette's of course but there is the potential of addiction) and the natural remedy rhodiola that I found out about from a presentation by the clinical researcher Dr. Richard Brown of Columbia University.

If someone has developed tardive dyskinesia from medication or knows someone who has I could give specifics on these treatments but don't become anti-medication but there's a whole new generation of antipsychotics that will never cause it. Put your energy behind public awareness of that as I have. Glycine and the glutamate antagonists have not yet been researched on Tourrette's but its a worthwhile area of research and one worth advocating for. There will be a generation of antipsychotics that will not cause tardive dyskinesia or diabetes and I am advocating for all new research to be on new modalities of treatment (not just glutamate antagonists) instead of multiple copies of Abilify and I haven't had a single provider agency disagree with me and in fact they all have my support (I volunteer as the board president of a non profit, that's part of our advocacy). Think about that. And if you wish act on that intuition instead of abandoning the idea of treatment.