Introducing My Meds

Medications “treating” Dystonia are like mediocre relationships – we make do notwithstanding their pitfalls because there’s nothing better waiting on the horizon. Admittedly, we tend to engage in a bit of a juggling act, no one pill supplying everything we need. Similar to Romeo and Juliet, we lack the official seal of approval and must carry on our affaires de coeur “off label.”

My main squeeze is Trihexyphenidyl, a mouthful. He’s famously known as Artane but you can call him Art. Think of him as the steadying influence in my life. His ethnicity is anticholinergic. No, he’s not from Anticholinergia but harkens from the same family as your friendly allergy meds, blocking the work of a neurotransmitter called acetylcholine that seems to have a hand in screwing up my muscles. Just as women haven’t figured out men, no one knows why Art’s so effective. Believe me, not every Dystonia patient falls under his spell. Our relationship is fraught with issues – all his doing – but I’m not giving up on him until someone better comes along.

Sinemet is an old flame I keep around for kicks (or avoidance thereof). Our chemistry’s rather simple: he introduces a pop of levodopa to help me synthesize dopamine, a sine qua non for treating Parkinson’s – on loan to little sister and no one’s miracle cure. The underlying secret to our success remains a mystery (neurotransmitter balance perhaps) but why fiddle with a good thing?

Finally, meet Zonegran (“Z”). His politics include anti seizure, which is an interesting perspective on the machinations of my muscles. Z is a relative newcomer to my stable of suitors. He replaced a childhood sweetheart in my mad-capped game of Spin The Bottle and I never paused to consider whether I needed anyone new in my life.

This medical “three-way” adds a crazy sideshow to my three-ring circus. Like all Dystonia therapies, they wax far from ideal, but they’re the ones I love to hate and hate to love!

32 responses to “Introducing My Meds

  1. So confused by this DX.. Considering trying to get disability, but then find out its very hard to. Trying to look at the bright side, but then I remember my hand is ice-cold for the past 5 yrs and sometimes fingers/hand dont want to move. Head/neck is hard to turn, very stiff to look over my shoulder, drivings become difficult. Getting my degree in spring and supposed to find my way into the professional world, but have 2 beautiful daughters that Im so worried about. The pain, stiffness, soreness, fingers freezing in temp and sometimes just curled over and cant move them, overall fatigue. Sounds like I need DR, but visit after visit they dont know what to say, UNTIL recently got the the DX of dystonia. Soooo lost 😦

    • It’s easy to feel lost but you put one foot in front of the other. If you are not a strong fighter you will learn to be. I get of soooooo tired of having to fight for what I need.

  2. Hello Sheryl. Dystonia is a difficult and often painful journey. Taking care of yourself is critical. I urge you to seek support from the Dystonia Medical Research Foundation, which is able to provide a variety of assistance and may even be able to help you with filing for disability. Their toll free number is 800-377-DYST (3978). You may feel lost, but you are not alone.

  3. No, you definitely are not alone, Sheryl. There are many more dystonia patients out there than you think. It took me a long time and several doctors before I had my dystonia diagnosis and those were tough times, as I’m sure you know. At times I really thought I was going crazy! But once you have a diagnosis and a good movement disorder neurologist things slowly start to get better. It took my doctor about 18 months to get the drug cocktail just right and, although I am far from perfect I am a lot better than I was and in a lot less pain. Take care and good luck. Better days will arrive for you!

  4. I second Cheryl’s comments. Everything starts with diagnosis and a knowledgeable movement disorder neurologist. My medical cocktail evolved over time, trial and error the name of the game. I’ve tried a few meds that I believe made my dystonia worse. Daunting as all of this may seem, many have taken a similar path before you.

  5. This was my favorite posting so far! Great idea and loved the humor in it! Xo

    • Think of things this way: to date, my meds have been my longest lasting relationships!

      • LOL-I have to laugh at that one. My meds are:
        Clonozapam 0.5mg 4/day
        Baclofen 10mg 3/day
        Citalopram 20mg 1/day
        Gabapentin 300mg 5/day
        Procyclodine 5mg 3/day
        Tramadol 50mg 4/day

        Levadopa and Botox are ineffective.
        I also carry an Epipen just in case.

        I hate this daytime sleepiness that I can’t shake. If I fight it I go unconscious via Narcolepsy. I’m feeling slightly daft. I do not know if the daytime sleep is a Parkinson’s or a Dystonia related syndrome. Any answers? Thanks Andrea!

        • Hello Gary. Dystonia treatment is the farthest from “one size fits all” I can imagine. If anything, Baclofen and Klonopin (brand version of Clonazepam) made my walking worse. While I have side effects galore, the only daytime fatigue I suffer is from my walking. Perhaps the sleepiness is caused by your particular meds. -Pamela-

          • Hey Pamela- I wish they worked. Art and I had a six-month affair, but it put my body into a sea sponge, to the point that I had to place my mattress in a heavy duty plastic covers from the most sweat I have encountered in my life.

            I need an upgrade but to what I have no clue. Citalopram is not denting my Depression at all, but having just posted my ESA50 I do not have a clue how anyone could be unaffected by the pressures of a cruel Assessment. I wish I could just close my eyes even more than Blepharospasms, cling to my cats and wake up from the horrors of Disablism. The UK continually changes form to suit the goals of a cruel system that permits destitution and homelessness of the disabled yet refuses euthanasia.

            Since that’s not on the menu, and my GP was accurate about trying to make the medications work as long as I can endure the agonising pain, but seizures, fits, storms, and complete inability to move at all can not continue. This occurred Thursday again, but this was a 7 hour stretch. Suggestions? Big hugs, Gary

            • Gary, I send you a giant hug across the Atlantic. I wish I could find you a genie in a bottle! Though perhaps I’m stating the obvious and I’m no neurologist, are you a candidate for DBS surgery? I realize this isn’t appropriate for everyone and it’s certainly quite a step but I would hope you’ve left no stone unturned. Have you tried anti-seizure medication like Tegretol (which I used to take) or Zonegran (which I take)? -Pam-

              • Hey Pam,

                First off I want to thank you for everything that you do. I have gained so many kind, compassionate, and loving people that are genuinely concerned about each other. Through the groups I’ve met so many wonderful, new friends, at a time when so much of my local support system failed me.

                DBS is off of the table still for a few reasons. The Hydrocephalus has been a serious set-back, and there is proof of stroke damage has the neurologists at the National Hospital of Neurology and Neurosurgery are deeply concerned. Adding a series of electrical chargers into a traumatised region.

                I’ve asked about medications relative to the Seizures and Narcolepsy. I also have Dystonic Storms as well. Let’s face it: I’m a Piñata of Movement Disorders! I’ve sent a letter to the World Trade Centre Health Registry, as there are many of people that were involved in the Rescue and Recovery brigade that are developing bizarre symptoms, and maybe there are triggers that might have been further impacted by the absorption and inhalation of the pulverised WTC. I am leaving no stone unturned.

                I also have a political situation that is impacting every person that is disabled. I just sent out my ESA50, the questionnaire to determine whether Atos is going to perform a Work Capabilities Assessment, a highly disputed and flawed test designed by the Government and Atos to force 850,000 Claimants to the Work Related Activities Group. You must work for free at a location of their choosing for a minimum of 35 hours every week while looking for a job, as all benefits will be cut after 1 year. If you miss a week your benefit will be lowered to £27 per calendar week for 7 weeks. This includes those on chemotherapy for cancer. They estimate that 500,000 will be made homeless in the first year. The latest reports are indicated that 79 Claimants are dying every week, some by the disability or terminal illnesses, and by suicide.

                They anticipate increases of these rates, yet refuse to scrap the exam. Approximately 9-14% will remain on benefits, although the are halving the mobility components, forcing the Claimants to relinquish their mobility scooters. 85 organisations have sent letters of condemnation and demanding the Assessment be scrapped, signed by thousands of experts, yet Iain Duncan Smith, refuses to listen, and is permitting very few to go on the Support Group. They will not need to work, and they will be tested annually.

                One issue within the NHS, National Health Service, are limiting costly operations, like the £60,000 DBS.

                So if my team of specialists feel that it is something I need to do it will be my time to pull out my Law Certificate and also take IDS and (s)Cameron out back for a little bit of legal whoop-arse, replete with a tipper lorry full of media coverage, because this is intentional diversions to their hypocrisy surrounding the Banks, the City, the off-shore tax havens, and building Trident subs so we can play Risk with the Yanks.

                • That’s certainly a comment I wish I could publish on the front page of The Times (ours or yours). I’m thinking you should start a blog yourself- you already have one fan! I’ll take a front row seat if it comes down to a verbal spanking of the Conservative Mr. Cameron. You Brits have a way with words. I knew the touchy-feely picture they painted of British health care in the Summer Olympic ceremonies was too good to be true, the nurses were way too pretty! I wish you had better medical options but that’s Dystonia, which also deserves a whoop-arse! Please know this muse is always here for you.

  6. Congratulations Pam, this is a poem discovered “ART” in this way

  7. Cheryl, this may sound trite, all but when you write about your ordeal, it helps with putting it in perspective, with naming the fears, frustrations, and repurcussions of the meds and more. Keep on writing about it, in blogs, in a journal, creatively and otherwise, etc. Know that you are brave, to go about your business, to achieve every time you drive, for instance, despite the dystonia. Write about it. See a movement disorders doctor, and write about it here afterwards. We all will be listening. Welcome to the community of people trying to deal with dystonia. You’re not alone!

    • So true. My humor is a positive expression of the daily frustrations of dystonia. This disease can be a hippopotamus on our backs. There is tremendous comfort in knowing we are not alone.

  8. Great post, Dystonia Muse! You have shown that if you write about it with humor, compassion, the craziness of the drug cocktails, though far from ideal, they are sometimes our best option. Cheryl, keep on writing about your experiences, writing puts in perspective, the fears, the frustrations, the bravery of struggling through it. Write back to us here for more support. See a movement disorders Dr. and write about it here. We’ll be waiting to offer support. Welcome to the community of people dealing with dystonia. You are not alone.

  9. They say it takes a village!

  10. Quite enjoyable. I can relate for subtle reasons.

    • Hello Andy. I’m happy when someone can relate for any reason. My intention is to wax broadly beyond dystonia. My world didn’t flip crazily overnight like many people but I’ve had other health issues arise out of nowhere later in life that certainly have rocked my world. Chronic illness is quite the bothersome traveling companion. Don’t we all wish we could leave it at home!

  11. This is my favorite post yet!!! Very clever and informative. Keep up the great work!

  12. I have just discovered you and am so thankful I did! I cope with Dystonia thru humor. My relationships with men mimic my relationships with medications…some are good for one date and others I can see spending more time with. Thank you for the laughs on a not so funny disorder. Hopefully one day we can all breakup with Dystonia!

    • Leah, So nice to hear from you, sorry for the delay in responding. Sometimes, my relationships with my meds are better than my relationships with men. In both cases, can’t live with or without them (lol)! While Dystonia is the farthest from a barrel of laughs one can imagine, our attitudes guide our lives and my preference is optimism and humor. As for a break-up with Dystonia, that’s one I eagerly await. Take care. -Pamela-

  13. Regarding the NHS I am so very proud of it. You can not find a system that is so incredible, and the Opening Ceremonies accurately portrayed how, out of the Industrial Revolution unions and demands to bring the health of the UK from a luxury for the select few into the best in the world.

    However, after the Olympics and Paralympics, the world press left and Parliament returned their first order of business in the Commons was to take aim at the NHS and the Disabled. The clamp-down on costlier procedures is aimed strongest against the Disabled, as the DWP have raised a successful campaign against us, portrayed as shirkers, scum, work-shy frauds that live in luxury. My modest home looks nice but it is because I go without and wait for smart items on massive offers of 75% off. It might be for items that are discontinued, and sometimes I lose out on some items, but I prefer to be savvy, because I’m at home a lot, and I have always had a gift for making the best out of a situation. My social life is virtually in the crematorium, but In defence of that a recent poll indicated that 90% of respondents believe that a person on Benefits-especially Disabled Claimants-inside a pub are Benefits cheats. This is even if the person are not drinking.

    That is how twisted political diversionary tactics have made us guilty. It is so irrational they are. PM Cameron had a severely disabled son that passed away a few months before elections, where they were short of a majority and created a coalition with the Liberal Democrats. We all thought that, having a recent passing of their son he would hold a slight hint of compassion for others. Piffle! The best part: the Prime Minister, a man of privileged pedigree, took the Benefits. Typical!

    I would start a blog, but it is too difficult to get through a response, let alone typing my own cheeky blog-lol!

    • We know very little about British health care here, too busy worrying about our own. People are paranoid about the consequences of Obamacare. My jury is still out. I find it hard to believe lunatic rantings tossed around the Internet. I’m more concerned with the real failings of the present system than the imagined coming of socialized medicine. Gary, compassion is in short supply amongst politicians apparently even those with personal experience in the disability realm. (Though I must say shame on Cameron if his actions serve to deny others what he took for his son.) In office they’re on a political power trip. Disability benefits is a bugger of an issue. Nothing should give the deserving a bad name but that’s the underbelly of government assistance and truly horrible. People have enough to worry about getting through their day. I think a cheeky blog by a bloke like you would make a splash but I’ll express that opinion as a compliment and then table it. I must say, you’ve thrown me quite the challenge, now I’m struggling to keep abreast of politics in two countries (lol)!

  14. Wow, you do have a great sense of humor. I too,have used Artane and Sinemet. Didn’t do
    A thing for me. Thanks for sharing

  15. Hi Valerie. Never ceases to amaze me how variable we can be when it comes to these meds. Actually, I’m trying to go down on the Artane and I’ve met people who won’t even try it – helpful or not – given “Art’s” reputation for side effects, which is well deserved. Thank you for being a part of this community.

  16. Pamela you are always so upbeat. How did you get there?

    • Donna, Believe me, I have my frustrations, I just try to find humor in the midst of them to make them more bearable. Think of it this way, at the end of our lives, no one gives us time credits for the crappy moments. Much of my battle has been self-esteem and I think that once I reached a turning point things kind of fell into place. I can’t stand this disease, I hate my speech. Though people would tell you that I’m completely understandable when I speak slowly, I have a higher bar, I want to use the words of my choice without impediment. But the pity party is tiring and ultimately unproductive. This is it, we only live once. I’m completely inspired by the people I’ve met – online and in person – who have dystonia including you. You all help me to maintain a balanced outlook and put my issues in perspective. This blog has truly changed my life, becoming part of my dystonia journey and helping me to cope. There are times I’ll rephrase a negative sentence because that’s not the person I want to be, it’s not about presenting an artificial front to the world, it’s about shaping my own thoughts by focusing on a positive message. -Pam –

  17. Pingback: 1000mg Of Hope - Trying to understand Dystonia medicationsAbledis

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