MARINOL ANYONE?

[Guest Guest_ERIC]

I am currently taking Marinol- as my motor tics are so overboad- (see my other thread titled, "light sensitivities" for an example)

 

My last doctor(no longer!)-- gave me Haldol- 10 minutes after he told me I had TS---with no follow up visit or intent to moniter---just instructions on how and when to increase my dose-forget that!!

 

Thus far the 2.5mg Marinol hardly even tickles me---however 5 to 7.5 twice a day--make a "reasonable" difference--on my overall stress and panic attacks--and helps with my rage tics/self-injurious behavior and so on...

 

I almost wished it had no effect--because as many know, it is very expensive--and--my insurance does not cover it---

 

30/supply of 2.5 alone is 150.00$

 

at this rate--inorder to even budge my insane amount of hypertension I have to take almost 4 a/day= about 600.00$ a month-

 

man--streetdrugs are cheaper than this--

 

anyway--I was wondering if anyone is taking it??and how has been the experience longterm--or---if anyone knows of a online source that I could order it for cheaper---not many doctor are willing to go this direction--plus-- I am sure many would be highly reluctant to give it to children--for it is considered a narcotic-

 

thus far--it is very helpful--right now it is making me very sleepy as a side effect---but--even this is desirable for me--sleepness vs the sedating effect of it---

I was wondering if there was a tolerance factor--cuz--boy I hate to spend even more on it---

 

however -again--it is helping--the best part is it lasts for hours--and is rather mild/ a bit dreamy/ and helps me sleep and even helps my depression too--

 

for contrast I gave my 280 pound friend a single harmless 2.5mg--and--he felt so stress free he fell asleep for 14 hours--he felt great--anyway-

 

it may seem excessive--but--10mg just starts to work for me---however-- it seems to help keep my stress level down enough I can cope with my tics better--indirect or not--it is a help

 

it works--but--I am not sure if I like the sensation-- or to feel it perpetually for that matter -bit of irony-indeed

 

anyway--I would be happy to go more into detail about it--if it interest anyone-or if anyone could share their experience on it--I'll save my breath til then

 

But--regardless-ALAS--something kinda of sorta works!

 

for the small fraction who do not know--Marinol is synthetic Delta-9--(active agent in Cannibus)

[Chemar]

Hey Eric

 

I sure know about the nastiness of Haldol.....it did very bad stuff to my son, as did all the other stuff they tried him on.

 

Thankfully, having found success with the natural treatments...especially supplements and accupuncture.....he is totally med free and doing GREAT!

Gone from very severe TS/OCD to very mild.

 

My son takes 5HTP for his OCD/depression and it has worked wonders. You cant mix it with SSRI's tho ....as it increases seratonin too...but in a natural way.

 

I have read a lot about the research being funded by the TSA into Marinol and THC etc for TS treatment....I am glad it is helping you.

 

Oops somehow the end of my post got lost....

Just wanted to add that there are so many really good natural treatments that could help you that may be far less costly than this med...especially as, although it seems to help you some, yet you are not necessarily wanting to have to take so much to get the benefit from it.

 

If you need details on some of the helpful stuff we have found...let me know.

I can truly idewntify because my son's TS used to be so very severe...so i know how it is!

Would love to be able to help you any way we can.

[Claire]

Eric,

 

You are lucky to have come here and found Chemar. I hope that you communicate more with her and really listen to what she has to say.

 

Chemar's son had severe tics/TS with OCD issues, and now he is sooooooooooo much better through the supplement program she put him on to build up his immune system. If you don't have time for a lot of research, then you might try Bonnie's supplements at www.bonniegr.com.

 

As Chemar said, many of the supplements don't mix with medicin, so you might need a doctor's guidance here. Or check out the alternative doctor list at the top of this thread.

 

Most of us either chose not to try meds, or had a bad experience with them--our focus is rebuilding health and the neurological system through natural means.

 

Good luck and God Bless

 

Claire

[Eric]

everyone here has drowned me with support--for that I thank--

 

ok--what exactly is--5HTP--or--SSI???

 

of the thousand links I have visited about TS--

 

I happened upon this one--

 

this has given me the most info and support-

 

-Eric

[Chemar]

5HTP is 5-hydroxy tryptophan....active in the seratonin metabolic pathway.

It promotes the natural production of seratonin, which has been found to be deficient in folks with OCD & Depression. 5HTP also occurs naturally in the body and so taking it as a supplement works along natural pathways.

 

 

SSRI's are the prescription meds given for OCD & depression like Prozac, Paxil, Zoloft, Luvox etc...SSRI stands for Selective Seratonin Reuptake Inhibitor....by the name you can see that they increase seratonin in an unnatural way, by blocking it's reabsorption. that is one of the reasons for the icky side effects....unnatural inhibition of a natural pathway.

 

 

Eric, have you ever checked out the BrainTalk Forum?

I love Latitudes best....

but I also frequent BrainTalk as there is a very wide spectrum of topics discussed there...also lots of adults with TS post there...

the whole of BrainTalk is made up of numerous different boards for all manner and means of neurological, psychological, psychiatric and other "brain"/nervous system issues and it really is a very stimulating environment. It has just moved to a new server after many years on the MGH ones..

 

The BrainTalk TS board is at

http://brain.hastypastry.net/forums/forumd...aysprune=&f=253

 

and the main menu for all the other boards, in alphabetical order, is

http://brain.hastypastry.net/forums/index.php?

 

 

There is also a great site which you may already know called "Life's a twitch"

http://www.lifesatwitch.com

Duncan mcKinley (Dr Dunc) who runs the site is a psychologist who has TS himself.

really nice guy and very informed on all the latest stuff on TS.

 

We are really happy that you have joined us here at Latitudes.

This is the most caring group of folks you could ever hope to meet in cyberspace

[guy123]

Sorry to bump this old thread.

 

I am very interested in this. I've been reading some studies online suggesting that Marinol may help reduce tics and cause further reduction as treatment continues.

 

I would think you would need to go to a very liberal doctor to get this prescription, however. How did you obtain it?

 

My doctor wanted to put me on Zoloft for my eye blinking tics but I had a bad reaction after only 1 pill so I'm hesitant to try SSRIs again (especially considering the sexual side effects... and I don't think my gf would be very happy about that, either).

 

So my research has basically lead me to the following conclusions:

 

- Antipsychotics/Neuroleptics - can help reduce tics but can cause TARDIVE DYSKINESIA. For that reason I don't even want to try any of them.

 

- SSRIs - some can work, but there are reports of them also making tics worse. And a horrible list of side effects (sexual/zombie/etc.)

 

- Guanfacine (probably spelled wrong) aka. Tenex (or was it Tennex?) - a blood pressure medication that seems to lesses tics in some individuals. I wanted to try this but my doctor said no, in favor of Zoloft.

 

- Marinol - sounds awesome, I heard it increases your appetite, too (I've got a very fast metabolism so this might help), and now the studies I'm reading suggest it might work on tics as well.

 

But like I said, I'd feel like I was asking my doctor for pot if I were to ask for that, so how does one obtain it?

[Chemar]

Hello Guy

I believe Marinol is only available by rx in certain areas, but it is a legitimate medication, not an illegal drug.

 

the Tourette Syndrome Association has also sponsored some pioneering work on the benefits of cannnabis to TS sufferers. You can request info on the various studies etc from them at http://www.tsa-usa.org

[Chemar]

i just wanted to give you a PS here too Guy

 

if you have OCD/anxiety/phobias then be careful as where the MJ is supposed to be helpful with tics, metabolism, digestion etc it can intensify paranoia, phobia, anxiety etc

[guy123]

Hello Guy

I believe Marinol is only available by rx in certain areas, but it is a legitimate medication, not an illegal drug.

 

the Tourette Syndrome Association has also sponsored some pioneering work on the benefits of cannnabis to TS sufferers. You can request info on the various studies etc from the at http://www.tsa-usa.org

 

I think it's available around here as one of my sister's friends is on it (for appetite stimulation due to a wasting condition).

 

I would just feel like the doctor would automatically say no cuz it'd be like I'm asking for weed.

 

Really tho my doctor only wanted to put me on Zoloft for my eye blinking tic. After my bad experience I don't want to try any more SSRIs. Hopefully he'll be open to trying non-SSRI treatments and of course non-neuroleptic treatments.

 

Otherwise... do I go find a new doctor?