Curious. How long are your "good spells"

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Permalink Reply by BDrake on September 23, 2008 at 1:54pm

My longest good spell has been about 3 weeks with 2 weeks being average. I'm not completley dystonia free during these good spells. I always have a nagging pain under my shoulder blade, and tightness in my neck but what I constitue as a good spell are having no spasms that actually bend, twist, or pull certain parts of my body into abnormal positions and if they do, they only last a few hours. Usually during my good spells, I feel sore and bruised but I look completely normal and can usually function pretty well and my periods of being active last a lot longer before I have to call in a time out to rest.

Since I was told by one MDS that my dystonia is stress induced and to see a psychologist, I can sometimes take my good spells with a not so grateful attitude b/c it makes me feel like it's going away and it was all in my head after all, or so to speak. Isn't that an awful attitude to have? I always have an inner leap of joy when some sort of "drama" takes place and I can go through it without my dystonia acting up. I really don't believe that my dystonia is stresss induced because I have had several stressful moments since being diagnosed, that my dystonia does not act up. My dystonia also acts up when I do repetitive tasks, like chopping vegetables, folding clothes, sweeping, vacuuming, sometimes walking for a long period of time; anything that causes me to use my shoulder repetitvely or my legs for a long period of time. But just like the emotional side of it, physcial exertion doesn't always trigger the dystonia. And sometimes with no reason at all that I can find it will pop up out of the blue. And it is these times that makes me feel justified.

The reason I ask about getting a firm diagnosis is because, a doctor at University of Arkansas Medical Sciences told me I had cervical dystonia and writters cramp (my first diagnosis of dystonia) he then set me up with his fellow MDS for botox. She administered it in my upper arm and it started to work, and I went back to work only for fate to have my arm get caught in a machine and another episode come on, this caused the botox MDS to question my diagnosis and she sent me to Baylor in Houston, TX where I was given the "stress induced" diagnosis. At Baylor wilson's disease was ruled out as well as being a carrier of the DYT1 gene. Months later after a dental procedure dystonia set up in my jaw and had it clamped shut for 2 weeks before I could see a local nuero that administered botox in my face, he felt I had generalized dystonia and wanted me to see a local MDS that had just moved to the area, but the referral never went through b/c the MDS only saw geriatrics. That appointment in January 2008 was the last I've seen a neuro of any kind. So when asked what kind of dystonia I have, I never know what to say. I feel it's generalized because I have spams throughout my body; my throat/jaw, my arms, my legs, my neck ( most common), and occasionally my torso. I haven't been seeking any further treatment, because in two plus years no medication prescribed has ever helped. So, what should be my next step? If any?

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Permalink Reply by Elaine on November 3, 2009 at 12:30am

I am the same as you....I have my good spells and have stress and nothing happens.
ALWAYS if I exert myself in physio I have an episode. If they continue to work me I continue to have
episode after episode.

When I had a colonoscopy, no food being tired and run down. I had a bad movement episode.

When I have a lot of pain from (possible - waiting dx) fibro, I have movement episodes.

If pressure is put on my arm, such as a blood pressure cuff or pushing in the right way, it can bring on
an episode.
But mental stress...almost never on it's own.

I believe I have, and maybe you to, paroxysmal dystonia.

I saw my GP today. And she has let the psychogenic dx from the Neuro go and is finally treating me
seriously. It took an Endocrinologist and a Rheumatologist to dx other conditions before she did.
A few months ago she was ready to lump those conditions into psychogenic as well.

Psychogenic can really follow you and influence the care you receive not only for dystonia, but other conditions as well.
Elaine

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Permalink Reply by Robin Wood on September 24, 2008 at 3:37am

Becky, Becky, Becky ... Great topic !!!

Frist let me say this about what type of dystonia you have. When your dystonia frist showed up you had 2 types of focal dystonias; cervical dystonia and writters cramp. Your dystonia then progressed to more areas of your body so that is why your dx sorta changed ... same thing with me, except I went 5 years with 2 focal dystonias, Blepharospasm and writers cramp, then came the progession so now that more regions or areas of my body are involved I now have generalized like you.

About your dystonia being stressed induced. Stress induces everybodies dystonia as the same part of the brain, the basil ganglia that controls movement has a secondary function and that is emotion. Being emotionally upset, being stressed etc automatically equates to spasms, there is no two ways around that as the same part of the brain has control over both movement and emotion. Now stop and think about everything in life that requires emotion; an emotion can be sad, it can be happy, it can be shock, or fear. I for one, am very passionate about life, and have suffered spasms galore because of deep feelings ... like the poem "My Passion" says: Passion requires intensity. Intensity means feeling. Deep feeling brings dystonia, the thief, in to steal. Just because a doc tells you that it is stressed induced does not in any way shape or form mean it is all in your head in the context that you yourself are bringing it on, dystonia does it all on its own. Induced means it brings on a spasm(s) or causes them. Performing certian tasks when using body regions that are dystonic in you can also induce or cause spasms. Fatique, meaning from not getting the amount of rest and/or that good rem sleep can also induce or cause spasms, and this is different then physcial exertion.

About you being sore and bruised during your good spells ... Been there and can so relate. I can't say I've had a great summer because I've had a major progression in my left shoulder start up that has taken a lot of my mobility away and my legs have also gotten worse, but over all it was a good summer per say because I did not go thru all the rentless, never ending bouts where I was nothing but sore sore in between spasms. The one thing I changed this summer from the past 2 summers is the amount of water I drink. I drink 32 oz of water within my first half hour of waking and 3 - 4 more bottles spaced out during the day and let me tell you I feel a huge difference overall. Also you should start icing when you are in spasms and see if that helps too.

Dystonia has taught me one thing about going it alone with out any meds and that is you gotta be a peace within yourself and love yourself and life. It don't work if there are things eating at you, or if you have anger in you about life, about your condition etc etc. I think this is where some may benifit from a psychologist.

Peace, serenity and tranquility keep the beast dossil

Robin

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Permalink Reply by BDrake on September 24, 2008 at 9:28am

Robin,

Thank you so much for your reply. You always make me feel validated, somehow. And have a way of putting such a positive spin on things. I know the reason I took it, as being "all in my head" is because I was told to see a psychologist by the doctor at baylor after being told it was stress induced. And then there was the discussion right afterward, with whom I've always referred to as the "underling" neurologist. He went on to say that they've seen CSI agents with psycogenic parkinsons disease, brought on my all the stress in their job. Then after seeing a psychologist, he met with my husband and mentioned the term, conversion disorder, to him. So naturally that upsets me. I really enjoyed meeting with my psychologist, he helped me in areas of anxiety that I feel came secondary to the dystonia, but eventually I stopped going because I felt like I couldn't make it to acceptance if I was constantly being under a microscope and having to analyze myself, or finding out things that were "wrong/abnormal" with me and then having to meet with him to discuss it. I really do feel bettter about myself, since taking a break from therapy.

Sometimes, I feel like I'm having to prove this to so many people. Especially when I hear so much of the time, from people near and dear to me, when I'm having spasms "what's got you so stressed out?". It makes me feel like they view me as weak, like I don't process emotion like everyone else out there. My dystonia is rarely brought on my emotion. It's most often brought on by physical exertion/repitious movements and then I'd say 50/50 by emotion and no known trigger.

As the years and now months pass by, and I embrace/accept my dystonia I have noticed my good spells (while they still never get passed 3 weeks) are coming around more often. So that is an emotional side to it. They key to managing my dystonia is for me not to get carried away and over do it physically during these times ( which I tend to struggle with). I find my mind racing and running wild with "to do" lists when I have long bouts of good spells.

Anyway, thanks again for your reply. Peace within is definately key along with embracing life as it is...not how it was! And one thing my psychologist always said to me and I've heard it here ( I think by you) is that no doctor knows my dystonia like I do, all they can do is speculate and analyze. They don't live it, so they don't know what I do. One thing I have to remind myself...don't get caught up on what everyone else thinks!!!

~Becky

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Permalink Reply by Monica Coogan on November 1, 2009 at 11:25pm

see the mistake the doctors make is saying that your disorder is "stress induced". stress and anxiety simply aggravate the disorder itself. im so serious im like floored that 12+ doctors couldn't diagnose my husbands medication induced dystonia in four years, it took me about 40 hours of googling. im considering opening an office to tell ppl like u and my husband to come in and let me google-diagnose them. it seems to be more effective than 12 years of medical school lol.

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Permalink Reply by Cindyrella on September 24, 2008 at 9:09pm

Robin my friend:

I am always so jealous of your gift to write. Well said about stress. I am so grateful you are my friend. I belive that you when we first began talking really helped me look at all facets of stress ( good and bad).

Anyways good job. I hope all is well.

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Permalink Reply by BDrake on September 24, 2008 at 9:36pm

Cindyrella,

I agree. Robin is truely one of those "Angels Among Us". Having the privilage of getting to know her is one of the positives, dystonia has given me.

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Permalink Reply by bkaren46 on October 7, 2008 at 9:41am

Are Spasms the same as Myoclonic movements? I see a counselor on a regular basis, just to vent my feelings.

And my best friend was just giving 90 days to a year to live. She has pancreatic cancer. And this is quit a stressor that I am trying to deal with. We have been friends a very long time, so this is hard and bringing on more movements, my neck is back to being tipped to the left this time. So I believe stress can play a big role with dystonia.

Robin, Sometime I do feel at peace with myself and than somedays it is very hard.

Karen

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Permalink Reply by Robin Wood on September 29, 2008 at 8:49am

Becky,

Didn't get a chance to talk about good spells in my last reply, so here goes.

With the weather changing, ie; dew points, humidity and temps decreasing here in the desert, I am in my prime time, actually one of two prime times as I do well both in fall and spring. Of course this is not to say that I don't have spasms during these periods, they are however much more easier to manage and get calmed down. Also the spasms are usually more specific to being task related, in other words if I walk up hill or down hill that will always, no matter if it's during good spells or not, they will trigger spasms. Same goes with raising my arms up, that will always trigger spasms as well ... I never seem to get away from task type of spasms. The key with task type of spasms is to do every thing in moderation that triggers these spasms; better to be down and resting for an hour or so then to keep going and allowing the spasms to really set in to where I'm down for 2 or 3 days dealing with them and totally unable to use what ever body part that is spasmed. I say I do best during fall and spring because I have less weather related or triggered spasms and those types along with stress induced spasms always seem to be so much more set in, cruel, painful and relentless in nature.

The good times make me feel like I am on top of the world, I always feel rejuvinated and fresh; almost light and airey My energy level is sky high, of course, as I'm not burning up all my energy via spasms.

Keeping or maintaining my life on an even kilter, maintiaing that balance, keeping the stress and other what nots out of my life 24/7/365 is key in repeaping the rewards that the good times have to offer.

Being non~responsive to meds to me is more of a positive then a negative as I am able to fully enjoy my good times without being all medicated in between, I dispise not being in control of my own mind and/or being of sound mind and body which is probably why street drugs and alcohol has never interested me ... I'd much rather be high on life !!!! and during my good spells I am just that, high on life !!! and to think I get to experience that each and every time I am spasm free and much of the time on a whole new level.

Robin

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Permalink Reply by BDrake on October 2, 2008 at 9:18am

Robin-

I have never noticed any significant correlation between weather and my dystonia. But then honestly, I never pay attention to baramoter/dew points. Only when a front is moving in or there is a spike or drop in temperature. I have noticed that I feel my best right after a really bad episode. Like the leg issue I wrote you about. That was draining and very difficult and man did I feel so sore after it went away, but today marks one week since it began and 4 days since it went away and I feel GREAT! I"m fatigued but once I get up and moving I really feel as close to normal as I can get. This has become a pattern that has happened enought that I'd almost be willing to bet on it; a few days after a bad spell....comes a really really good spell.

I too can't stand the effects of meds. That was an issue I never could get through to the first doctor I saw when symptoms came on. Granted he was just a GP but still, I had 3 kids to take care of and was still working full-time. I could not be so doped up on pills that I couldn't function. How is that any less a handicap than the dystonia itself??!!?? I consider myself someone with a high pain tolerance so the pain wasn't the issue ( it was an issue just not the pressing one) as much as the uncontroled constant contraction of my arm and the unbelievable swelling in my hand.

~Becky

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Permalink Reply by Robin Wood on October 2, 2008 at 10:01am

Becky,

Dystonia takes, but somehow in it's own wierd sort of way; it also gives back. You learn to become more appreciative of all the little and/or simple things in life, that's for sure and as far as I'm concerned that's a postivie that comes out of a negative ... with every bad there is a good !!!

Sure wish some of those who take meds would come join us on this post as I'd be really curious to know how they feel in between or if they even have "good spells".

Robin

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Permalink Reply by St.John Fuller on October 3, 2008 at 7:31pm

Hi there Becky

I have to admit that i quite ignorant of my own condition. I guess i felt like i was obsessing on it too much. I guess i have turned my back on it in terms of wanting to know more. The last time a friend did some research for me, what she said to me just made me feel really sad and fore-lorn. So anyway all i know is that i loose control of my neck muscles which at their gentlest cause twitchyness and at their worst cause that rock solidness that is unbearable. I was on a course of botox injections for some time but found that my life was focused too much on those injections. Luckily for me i went and spent some time n South Africa where i couldn't afford the botox, so i just went without. Through doing so i learnt that i could survive without them. I haven't had botox now for 5+years. I would say i am in a constant dystonic state. In most things that are required in life i struggle. Standing at q's, sitting still for passport photos, commuting to work, holding down a job. What i have found though is that getting really physical helps me a lot. By using my muscles a lot it seems to help with the easing of the tension. Trying to remain still just increases it. The benefits aren't always noticeable at first, sometimes there can be an increase in the feeling of tension, but i have leant that this is just how muscles naturally feel like after a solid work out. After a while this added tension fades. When i start to feel better i start to feel more at peace, more confident, more capable and able. I recently spent two months in Canada working on farms. Before i went i was so unsure of going because my Dystonia was at that stage where it if it got worse, it could have left me in too much pain to do anything. I almost didn't board the plane. But now i am sitting here, back in the UK and i am glad that i went. I am also a little sorry that i couldn't stay longer because i am now trying to live in a city again and it really doesn't work for me (all the commuting - standing still in packed trains etc). Dystonia leaves me feeling trapped and being in a city just adds to that. Being out in the open starts to alleviate that and so i think i start to feel better naturally.

Anyway i think this has been a bit of a scatter brained ramble.

St.john

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