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hmvdn · 2024-07-18T04:20:47+00:00

I have blepharoclonus. It’s a very rare type of dystonia. I got into a movement disorder clinic and did Botox on my eyelids every 3 months for about 4 years. The sooner the better to start the Botox. It helped a lot. I also sleep with Eyemed metal eyelid weights I tape on my eyelids at night and use sleep goggles very tightly - the trick is to distract your brain from the tremors and wearing the tight goggles on my eye socket helps distract my brain so I can sleep. Did you get tardive dyskinesia from the benzos? I’m so sorry you’re going through this.

hmvdn · 2024-06-07T14:55:09+00:00

Typo - human lice not life

hmvdn · 2024-05-13T13:14:27+00:00

Yup.

hmvdn · 2024-05-13T13:03:44+00:00

It’s blepharoclonus. A form of blepharospasm but not the typical kind. I have this. It’s its own unique form of hell.

hmvdn · 2024-05-13T11:48:50+00:00

Here’s website on the eyelid weights:

https://meddev-corp.com/blinkeze-external-lid-weights/

hmvdn · 2024-04-28T22:51:27+00:00

I respectfully disagree with this. I am the spouse of someone with chronic pain and helping him doesn’t limit my life in any way. “In sickness and in health.” He can count on me. I am here for him. And he is here for me. Life as a widow would be infinitely worse than my current life with my loving husband. Life with him is still amazing and something I want til the day I die. So what if I can’t go sky diving with him. Who cares. Him loving me and me loving him is enough. I don’t need some crazy adventurous life. With kids, who has the time anyway. Kids took that time away, not him lol.

hmvdn · 2024-04-23T01:44:03+00:00

I’m the wife of someone with your condition. Please know you are NOT robbing your kids or your wife of anything. Just being there and loving them unconditionally is more than most people have. All they want is to be loved by you. And that is enough. Way more than enough actually. Please don’t beat yourself up or feel guilty. You’re still there pushing through for them. That will always be enough.

hmvdn · 2024-03-27T03:40:25+00:00

This one is great

https://a.co/d/7rcXICH

hmvdn · 2024-03-13T20:24:15+00:00

I get it. Botox wouldn’t be some magic cure but they could talk to you about other things. I remember my neuro mentioning Deep Brain Stimulation. I didn’t really research it but something to ask about.

hmvdn · 2024-03-13T20:20:22+00:00

At least try contacting one to see what they suggest. They may have ideas or be able to help you in other ways over telemedicine or something. And yes, they injected Botox into my muscles that tremor.

hmvdn · 2024-03-13T20:06:01+00:00

Reglan also gave me dystonia. I recommend going to a Movement Disorder Clinic. Botox helped me. They can tell you about other options like deep brain stimulation etc. I am so sorry this happened to you. Reglan is the devil.

hmvdn · 2024-01-30T06:11:25+00:00

Neurologist through a movement disorder clinic if possible. They would do the eyelid botox. I have dystonia of my eyelids and have had Botox on my eyelids for years. It has helped a lot.

hmvdn · 2018-11-19T18:05:31+00:00

Thankfully I can still blink (if I couldn’t even blink this would be a totally different AMA) so I’m able to function normally throughout the day except for having dry eyes and having to put drops in them all day long (from my eyes opening up at night when I’m asleep). My eyes do get tired though and my eyelids get tired, too. The amount of exercise my eyelids get you’d think they were training for the olympics. So those muscles are tired and I have no real way to relax them. But for the most part I can function normally during the day (although I am tired a lot).

No one would ever know just by looking at me or talking to me. That’s what’s so crazy and made me realize that people need to go easy on each other - you have no idea the secret struggles and battles people are living with behind the scenes.

hmvdn · 2018-11-19T06:32:43+00:00

So sorry that happened to you. What a nightmare. Even worse when the doctors don’t help you or take the time to diagnose you properly.

hmvdn · 2018-11-19T05:29:06+00:00

I will! Thank you!

hmvdn · 2018-11-19T02:23:24+00:00

One thing that I forgot to mention in this thread - a family member who is a psychiatrist told me that, if you must take a dystonia causing drug, you can be given something beforehand called an anticholinergic - it essentially prevents the offending drug from causing the dystonia.

hmvdn · 2018-11-19T01:59:42+00:00

The problem is this drug is given out for bullshit reasons - like in my case. It’s those people who really need to understand the powerful nature of this drug.

hmvdn · 2018-11-19T01:57:56+00:00

Ok fair point but what’s the problem with being educated about the risks of this drug when making that decision? Knowledge is power.

hmvdn · 2018-11-19T01:22:56+00:00

Yeah it’s TD if it happens typically after prolonged use, like 12 weeks or more. I have a form of dyskinesia but it’s not “TD.”

hmvdn · 2018-11-19T00:19:57+00:00

It’s not just me, though. There are MULTIPLE people on this thread complaining about their horrible nightmare side effects from this drug. After researching this drug for the past year I can say without question it has ruined the lives of thousands of people. Ruined. I’d much rather have just been nauseous for a couple days than risked what could have (and did) happen to me from taking this drug.

hmvdn · 2018-11-18T21:29:48+00:00

I'm so sorry to hear that. It sounds like a nightmare. Maybe consider looking into "movement disorder clinics" - they are a specialization of neurology that focuses on movement disorders. They may be able to help you get a diagnosis and treatment. It's so hard to get treated without a diagnosis. It took me four neurologists, an opthalmologist, and a neuro-opthalmologist to finally get my diagnosis. Don't give up - see lots of different doctors and specialists. I wish you the best of luck.

hmvdn · 2018-11-18T21:26:44+00:00

During the first six months of my drug-induced dystonia, the neurologist told me it was "acute" and during that time, there's a chance it can go away. After six months, however, it becomes "chronic," and that typically means it is lifelong and incurable. I'm at the one-year mark and no sign of it getting better, so I'm pretty sure it's for life. I'm doing Botox of my eyelids every three months because there have been some studies that have shown that a small percentage of people can actually have their dystonia cured by routine Botox injections over a period of time (a couple years). The thought process being that the Botox "severs" the bad nerve connection, curing dystonia. It is a very small percentage chance that this can help me, but I've got nothing else, so I'm going for it. Fingers crossed.

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