where to begin?

[nervous nelly]

Hello. I'm brand new with forums so please bare with me.

I am 22 and have had a tic disorder for about 8 years now. I have seen two seperate neurologists, both whom were unhelpful and unfortunately unwelcoming. I had my first experience with a pediatric neurologist at age 15 who told me this was something I would grow out of. 3 years later and still with tic I went on to see a highly recommended neurologist. He seemed almost annoyed, like I was wasting his time. He proceeded to express how "minor" my problem was and how he has patients with much more severe issues. This I completely understand. I know how blessed I am and I do not take that for granted but to me this was not a minor issue. It seemed like not a day would go by without someone asking "do you wear contacts/are they bothering you?" or staring with confusion "whats wrong with your eyes?" it devastated me. I constantly felt like everyone was always looking and laughing at me. I started to just avoid people as much as possible. I thought this was something I was just going to have to live with and that was that.

Im just now taking this matter into my own hands and not letting it keep control of my life. Only problem is, I have absolutely no idea where to start. I tried topomax for a few months but didn't notice a significant change and didn't feel as if I could speak freely with the neurologist. I would like to avoid medications if possible but I'm unsure what else to try. I have also spent several years consulting a therapist. Mostly trying to reduce anxiety and stress to see if that would in any way help minimize the tic. However it seems no matter how much I try to stay stress free the tic remains and in full effect.

My tic come in three forms. Mainly, there's the excessive blinking/sometimes hard blinking. But I also experience a nose tic (like a bunny) and clenching my teeth.

Any advice at all would be helpful. Thanks so much.

[guy123]

Wow, sorry you had to deal with that.

 

My neurologist and doctors were pretty cool and helpful. I'd recommend finding someone else AND leaving reviews online about the bad service you had.

 

I have had a hard blinking tic since I was 17. I'm 31 now. While it hasn't eliminated it, Clonidine has made an improvement for me. I take 1/4 of a 0.1mg pill nightly, which is a total dose of 0.025mg. It might be something worth trying if you want to go the medication route.

[nervous nelly]

Wow, sorry you had to deal with that.

 

My neurologist and doctors were pretty cool and helpful. I'd recommend finding someone else AND leaving reviews online about the bad service you had.

 

I have had a hard blinking tic since I was 17. I'm 31 now. While it hasn't eliminated it, Clonidine has made an improvement for me. I take 1/4 of a 0.1mg pill nightly, which is a total dose of 0.025mg. It might be something worth trying if you want to go the medication route.

 

 

 

Thanks so much for the input! I've spent the last few days reading all these threads and everyone is so knowledgable and in depth. Im trying to learn whatever i can but i feel so clueless. I ordered the book and am just waiting for it to arrive so I can dive in.

[Chemar]

Hi and welcome

 

good that you are going to read Sheila's book as it really does help to form a solid foundation as you seek ways to help with the tics.

 

Having an Integrative or Environmental doctor (MD or DO) to work with really works well as they have a more holistic approach, whereas many conventional doctors just want to prescribe a pill to mask symptoms rather than find root causes and effective treatments.

 

I would suggest you read our Helpful Threads as there may be pointers there to help you move forward: http://www.latitudes.org/forums/index.php?showtopic=2459

 

Also, on a personal note, I have a family member with TS who had a very very bad reaction to clonidine, even in low dose, so although it may work for some, it can have very adverse reactions in others.