New here.

[talynn]

Hi all. Found this through a suggestion on DMRF. I am 33 year old female with cervical dystonia that started 11 years ago. Recently started developing Blepharospasm and hemifacial dystonia (also have spasms in both cheeks when smiling). Mother has severe blepharospasm and slight cervical dystonia. She cannot drive or do much without help and had to go on disability. Our movement disorder specialist says its one of the worst cases he has ever seen. Nine year old daughter has been diagnosed with essential tremor. Yay genetics!

Currently receive botox for the CD and started for the bleph last month. Also do a small dose of trihexiphenidyl (artane) and propranalol as needed for overall shakiness and anxiety. I guess I am here because I am scared and upset. We finally had the darn neck sort of under control then the eyes start going bad. Boo. I have been looking more into DBS and would love to hear stories and experiences from others. My mother is supposed to be having myectomy with Dr. Andersonś clinic but she keeps putting it off. Poor thing is terrified to have her eyes cut on but i keep telling her go for it! Happy Monday and hope you all had a nice holiday!

-T

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Welcome..

[BlanketTime1]

welcome! my father has Parkinson's and i'm displaying early onset symptoms after struggling with ataxia for a few years and more recently dystonia. genetics . it's bad enough facing one set of symptoms. every time I develop a new symptom I panic, think of eight ways to kill myself, become enraged, then depressed before returning to "normal." stay strong.

[talynn in reply to BlanketTime1]

Shoot!! Stupid genetics!! I agree... its like you deal with one issue for awhile and kinda get aquainted with that reality then next thing you know - bam! A whole new one. I know it is in no way funny but I couldnt help but giggle at your emotional response only because i get it completely. The ¨why me´s¨ consume me some days i swear! I guess as bad and frustrating as it is, there is always someone out there dealing with something worse. Weird way to look at it but it helps keep the worry in check at times.

Anyway, thank you for sharing! Feel free to vent anytime you need and I would love to hear more about your journey sometime. You stay strong as well.

-T

[BlanketTime1 in reply to talynn]

the trick is to remind myself during the '8 ways to kill myself' bit that it's my new normal and will pass.

[Cardboard]

Hey, I'm new to the site too and have bleph/cerv dys...and am 33. But I don't have a mom is such distress, and really feel for both of you. I can't imagine how scary it is to go through all this with a loved one. Stay strong! I know its hard. I get botox for cerv dys and bleph. It has helped my neck more than my head/face. At first just 1 eye was bad, now they both are. I unfortunately have no info about dbs, nor has it been recommended to me yet, but I'm very interested. It really seems like the only significant treatment. Botox feels like a bandaid. I'm scared too, but onward! There's forums like this that might connect us to a solution. Good luck!

[talynn in reply to Cardboard]

Hi! You know.. I think having my mom who is also my best friend to go through this with is actually so good. Its nice having someone close who ¨gets it¨. It has been crazy thinking back, watching her struggle with it first and being terrified I would get it too. Then it happened. At the same time it has been good in that we knew what was happening and where to go for help. I hope I can help my daughter god forbid she gets it too.

Anyway, seems we have a bit in common! Do you have a movement disorder specialist? How is the botox going for you? It does seem like a bandaid. A bandaid we are lucky to have! I am pretty determined to find some other options if there are any. Have you tried any medications?

Thanks for the response and hang in there! We are definitely not alone in this and that can be comforting (though I would never wish this on anyone).

-T

[Cardboard in reply to talynn]

That is a bright side--to know someone with experience with all this and know what might be coming. I didn't consider that.

I see a headache specialiat who specializes in dystonia/botox. I struggled for 15 years w many neurologists before my current one correctly diagnosed my w cervical dystonia/bleph/tension headaches. So I have a lot of respect for her skils. Honestly, I love/hate botox. Sometimes it works better than others but its the only thing that has helped significantly w few side effects.

I have tried many meds. Currently on ext release lyrica and codeine. They help. Have you had any luck w meds? How is botox for you?

It is very comforting to know someone else is in the same boat, but yeah, would not wish this on anyone! My Mom is a nurse and just got me a Tens machine thing. Haven't looked into it, but it's supposed to help...I'll let you know if it does anything. Have you tried acupuncture? I've been reluctant. Thanks for being there! It's nice to talk to someone who has a sense of what I'm going through.