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OUCH! New symptom? Side effect? Help!


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#1 tremblenurse

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Posted 17 August 2013 - 06:39 PM

JUST OUCH!

As some of you know, I am new to a PD dx and am titrating up on Sinemet (2 weeks today) I am currently at 1 full tab at 7 am and then 1/2 tabs at 12, 5 and 10 pm. I just started on this schedule yesterday (then tomorrow I will increase to full at 7 and 5 with 1/2 at 12 and 10)

Yesterday and today I have gotten the absolute worst spasms I have ever had in my tricep muscle yesterday and in my thumb and wrist today (both on the same side) Yesterday I had weird movement under the skin in my arm during the cramp and afterward and it still hurts today....Earlier I had those same weird movements under the skin in my thumb (you know the fatty part under your hand) but no cramping, it just felt like an odd tremor in a different spot so I looked at it.

The AWFUL spasms have both been in the middle of my dose, before I start to notice it wearing off

I have dystonias, but usually I don't feel much with them other than an odd radiating electric feeling and the knowledge that those parts won't move...THESE are MUCH different.

Does anyone know what this is? It's kinda freakin' me out big time!

#2 KimAgain

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Posted 17 August 2013 - 07:38 PM

Dystonic spasms?

#3 RNwithPD

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Posted 17 August 2013 - 07:59 PM

Strange. You might need to call your Neurologist and ask.

Kevin

#4 tremblenurse

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Posted 17 August 2013 - 08:06 PM

Kevin,

I called the pharmacy first and they suggested calling the doc.....sooo I called USF and I'm pleased to say that the on call doc was on the phone with me in less than 10 mins.


The on call doc hadn't heard of this as a side effect of Sinemet and isn't sure that it is related at all but suggested that I go back to the last dose I didn't have problems with until I can speak with my neuro on Monday..He said "call her immediately on Monday."

That being said, Kim, I wonder if that is what it is...I have never had this kind of pain associated with what my doc referred to as dystonia...I've had spasms before and they hurt but never this bad.

It felt like I was getting the EMG all over again....and it still hurts and feels like my whole hand and bottom half of my arm have been worked out overtime....painful and tired up to my elbow...the web between my thumb and index finger hurt to stretch..but it has lessened up.

I was so excited to be going up in my dose...tomorrow I was to go up to the next titration..now I have to go one step back :(

#5 KimAgain

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Posted 17 August 2013 - 09:45 PM

I've had horribly painful dystonic spasms when my DBS is over stimulating - it feels like my muscles are twisting under my skin.

Try not to distress yourself over your meds Trembly... slow as you go is the best way! It can take quite some time to get your meds right and can be an ongoing process, so try to be patient, you'll get there, I'm certain of it.

#6 tremblenurse

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Posted 17 August 2013 - 10:04 PM

Kim,

Thanks, I am trying so hard to be patient...still hurting in my hand but not as bad as it was....took my last dose of the day..unfortunately I wasn't as excited and hopeful about this one as I have been.

The twisting under the skin sounds awful..my description would be as if everything from one side and the other side all decided to jump up in the middle like this ^^^^^^^^^^^ with a giant sucker punch at the the ^...my arm and hand feel like someone punched me..yanno that dead and painful feeling ya get after that..GRRRR

I swear I was rolling along so well until yesterday....Thursday was harsh at the very end of my work day but I was pretty good after my third dose....then THIS.

To top it all off...I have to decrease my meds now until Monday and I have to get a tooth pulled after work (seeing 30 patients Monday morning between 8:15 am-12:45 pm)...and I would imagine I'll be feeling worse for the wear after the stress and trauma of that whole thang.

My magic 8 ball is saying "This is gonna be a bumpy week ahead"

#7 tremblenurse

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Posted 17 August 2013 - 10:06 PM

Oh, and the movement under the skin looks like mice or some kind of critters fighting to get out..very science fiction-y (and yes science fiction-y is a word) lol

#8 Beau's Mom

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Posted 17 August 2013 - 10:52 PM

When I've been accidentally given too much Sinemet (a nursing error in a rehab), the MDS on call had me take 50mg of Benedryl. Always check with your doctor before taking any unsolicited advice!
Dianne

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#9 christie

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Posted 18 August 2013 - 03:35 AM

tremblenurse, I've been having (almost everywhere, including the facial musles) these weird "movements" (involuntary muscle contractions? myoclonus?) you describe for quite a long time now....not levodopa-related in my case (and, unfortunately, not levodopa -responsive either!) cause I had them long before I started treatment. Could be your dystonia flaring up a little. Could be a temporary side effect of levodopa. Until your body adjusts to this new drug/dosage. I think that some Pd symptoms, especially dystonia, may initially get worse with the beginning of treatment, until a full response to the drug is achieved. Don't get too alarmed.

Edited by christie, 18 August 2013 - 03:36 AM.

English is not my first language !

#10 Brad24

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Posted 18 August 2013 - 07:28 AM

I have had these also and they started before I was even DX'd. I always get them in my back when reaching to far for something or sometimes after working out. I get them in my left elbow/ tricep when doing push-ups or anything where I push off with my arms. I was getting the in my left pectoral muscle a lot to but things have gotten better since starting the Neupro patch. I have less bad days now I think. I also take a small dose of creating each day after working out which I think may help. I also upped my water intake which seems to help too.


DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#11 tremblenurse

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Posted 18 August 2013 - 08:17 AM

When I've been accidentally given too much Sinemet (a nursing error in a rehab), the MDS on call had me take 50mg of Benedryl. Always check with your doctor before taking any unsolicited advice!


Not sure that I had too much in my case...the first one that happened was just a couple of hours after taking one full tablet (only my second full tablet)....the second/third came hours after taking my 1st and 3rd doses of the day..the first dose is full tab the 3rd was 1/2 tab)

I'm going to ask my MDS about the Benadryl, I saw that used on a patient with dystonia on youtube.

#12 tremblenurse

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Posted 18 August 2013 - 08:19 AM

I have had these also and they started before I was even DX'd. I always get them in my back when reaching to far for something or sometimes after working out. I get them in my left elbow/ tricep when doing push-ups or anything where I push off with my arms. I was getting the in my left pectoral muscle a lot to but things have gotten better since starting the Neupro patch. I have less bad days now I think. I also take a small dose of creating each day after working out which I think may help. I also upped my water intake which seems to help too.


I've had spasms before but this was the worst I've ever had.....there is a similarity to the ones you can get from lifting (I think those are from lactic acid build up)...

I don't know much about the Neupro patch (like nothing) what is it helpful for? Any side effects that you've noticed?

#13 tremblenurse

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Posted 18 August 2013 - 08:39 AM

tremblenurse, I've been having (almost everywhere, including the facial musles) these weird "movements" (involuntary muscle contractions? myoclonus?) you describe for quite a long time now....not levodopa-related in my case (and, unfortunately, not levodopa -responsive either!) cause I had them long before I started treatment. Could be your dystonia flaring up a little. Could be a temporary side effect of levodopa. Until your body adjusts to this new drug/dosage. I think that some Pd symptoms, especially dystonia, may initially get worse with the beginning of treatment, until a full response to the drug is achieved. Don't get too alarmed.


I hope you're right that my body is just adjusting to the meds and trying to reach full response/therapeutic dose...It's sort of disheartening to be going up on my dosage soooo slowly and to just just started to notice some improvement and then POW this happens.

The doc I spoke with doesn't necessarily think it's related to the medication but conceded that my MDS is much more experienced with the dx and med.

I think what I was trying to describe is called fasciculations (not sure if that's spelled right) and myoclonus would be more like a jerking motion..hiccups, and the jerk you get just as you're falling asleep are the types I saw described..as well as myoclonus that can be elicited in deep tendon reflexes on neuro exams.

Which ever it is or what ever is causing it, I am still VERY sore/hurting 14 hours later...my tricep is finally just mildly sore and that was 24 hours ago.

UGH

#14 KimAgain

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Posted 18 August 2013 - 08:42 AM

Trembly, I feel for you. It can be so very, very difficult to sort out side effects, from the disease, a spike in symptoms from a deficit in medication, and the side-effect (or direct effect) of medication for one thing over the medication for another. I think we have probably all been through some degree of this confusing and difficult situation at one time or another. That's the bad news. The good new is...

A few years from now, you'll be an old hand at this, you'll know your own body so much more intimately and the crazy ups and downs of your own symptoms, that you'll be rolling with the punches just as most of us learn to do. The "punches" are really more like nudges as time goes on and, you don't so much roll as wobble a little... Time is kind that way. The early days of anguish and distress over not finding a ready medical solution to your erratic, sometimes mind boggling symptoms, gives way I believe, to the later days of understanding that, this too, shall indeed pass.

I'm so sorry I have no better advice to give, but I am so grateful to see that, as always, here is the place to come for sound, solid input--you will find you are never alone here.

Hang tough,
Kim

#15 Brad24

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Posted 18 August 2013 - 09:45 AM

I've had spasms before but this was the worst I've ever had.....there is a similarity to the ones you can get from lifting (I think those are from lactic acid build up)...

I don't know much about the Neupro patch (like nothing) what is it helpful for? Any side effects that you've noticed?


Its a dopamine agonist. My MDS put me on it about 3 months ago to replace Requip XL. She told me that since I am still so active it would provide me with a steadier dose over a 24 hour period compared to the Requip. I did have a rough week when switching over. Upset stomach, heartburn was the most of it. It does seem to make me tired but it generally passes after a half hour or if I take a power nap. Overall for me it's been much better. However, if yo have read enough posts on this site you will see that there is nothing that works for everyone. This disease seems to effect everyone differently. I for one feel lucky because I can still work full time as a State Trooper. Others can't. I just don't get it.
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#16 tremblenurse

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Posted 18 August 2013 - 10:32 AM

Kim

Thanks again, you give the good advice that comes with experience..very helpful.

I like the concept of punches becoming nudges in the future.

I guess I might have been asking too much....its just been a dx loooong in the making and I was so excited that I might start to feel better..FINALLY.

I began with things in the early 2000s...easy silly stuff with clumsiness...droppsies and falls that I could just joke away.

2004 I had a terrible virus of some sort and then all of these other things began happening in different areas (feet, urinary, neck couldn't move and eye problems)...this lead to other things and they thought I had MS.

I didn't have insurance so I took the Baclofen and waited for things to begin again.

Over the next years things were mostly mild (but I was in a low stress world)...I blew everything off.

2011 I began having cognitive issues

2012 I continued with the intermittent cog stuff...became sun sensitive and heat sensitive and went into a 2.5 month battle with debilitating fatigue.

By the early fall it was just some occasional foot stuff followed by the return of the cognitive stuff...then fatigue...the my left foot quit moving (it is moving slowly since beginning the Sinemet)...this lead way for terrible dysarthria.

During the early fall my Mom noticed a tremor...and I had had that for years on and off and really didn't think anything of it...it's become, like everything else, more pronounced since the week of Thanksgiving.

Sooo that's a bunch of it...the winter/spring were tests and waiting for results until I FINALLY was sent to USF and my MDS on Aug 1st.

Sooo, as I'm sure many of you have similar histories, I was sooo beyond ready for a dx and SOMETHING, ANYTHING that would help.

Now my hope is not what it was a week ago...but reading your post...the punches becoming nudges,...DOES give me some solace.

Thank you Kim :)

~~~~Trembly (I like that ;) )

#17 KimAgain

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Posted 18 August 2013 - 04:35 PM

That's the spirit Trembly, that's the spirit!

#18 tremblenurse

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Posted 20 August 2013 - 06:39 PM

Update

FINALLY got to speak with a medical person at my MDS' office...after playing phone tag with schedulers and message takers who were relaying messages that "Dr. wants to know if you want to stop by tomorrow" (the girl sounded so casual it was like an invite for coffee LOL)...I said "No, I live about an hour a way and just had dental work done today so it's not possible" (not to mention that I have to move Heaven and earth to get any time out of work)

Today I got the call from the schedulers and they said "We're just calling to schedule your appointment for next Tuesday." I'm a bit medicated from the aforementioned dental work so I asked quizzically "Excuse me? What appointment, I don't have one until 09/03" The girl informed me that I could be seen to discuss medication questions next Tuesday and that would cancel my appointment for the 3rd.

THIS is not an option...the whole moving of the celestial bodies and stuff has been done for the 3rd AND I just want to find out what to do NOW.

In my office, I have made these calls to people, "Dr. wants to see if you can come in today." I know that sometimes it is just casual, if someone is having continued problems etc....I also know it is something I say when it's something bad (we got reports back and they say something semi/very awful) But for just a medication reaction. PLEASE have someone with some knowledge of medical issues call me back and speak with me.......GRRRR.

So FINALLY I spoke with the medical assistant and told her what was going on in detail since I started the Sinemet....and long story short (too late I know), the doctor wants to keep me at the dose I'm at now, 1/2 tab, 4 x daily until I see her on the 3rd.............The medical assistant told me that if my symptoms were improved, even if they had room TO improve, that the dose I was on without side effects would be where I stay.

SOOOOO THIS might be as good as it gets (???) I'm guessing...for now anyway.

Well...I'm better than I was 3 weeks ago...and better than I was on Friday and Saturday with the awfulness........I was just hoping for MORE.

To top it all off I had that dental work which has stressed me...my meds may or may not be working to their full potential because of this and now my speech is effected (one of my more fun symptoms) I sound like I'm drunk without the buzz.

I knew this would be a bumpy week.

Silver lining:Well...I'm better than I was 3 weeks ago...and better than I was on Friday and Saturday

#19 Beau's Mom

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Posted 20 August 2013 - 08:18 PM

Hang in there. I've given up hoping for a smooth ride through PD and something as simple as dental work to a "normal" person. I just pray and hold on for the ride, and try not to resist where it takes me. It's the resistance that causes more stress.
Dianne

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#20 tremblenurse

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Posted 20 August 2013 - 09:14 PM

Dianne...sooo true...in life and in life with PD....acceptance vs resistance seems to make all the difference in the experience and stress or lack thereof.




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