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By seawench On 2013.03.27 01:59
Has any one had any adverse reactions to valium? We had a rootcanal recently and 2 doses of valium to relieve the muscle rigidity. Since then he has had severe episdes of low BP, more than usual as he has hypotension with his Atypical PD - MSA.

I did read that it can cause Hypotension (Great!) and that it can interfer with the levadopa. I was hoping we could just ride it out as it passes thru his system but a week later he is getting weaker and has taken to his bed.

Right now it feels like we just had major surgery and it's kicking our butts.

P.S. the root canal was painless and there was no infection involved. It was needed because the decay was too deep to restore the tooth without puncturing the canal. We chose to restore the tooth because it was in the front and visible.


By jcoff012 On 2013.03.27 09:16
My husband goes to the dentist next Thursday for a deep root canal, too...he was asked about Valium and other painkillers, so thank you for posting. He has only had a bad reaction to Codeine, so I will gladly post when he picks an appropriate painkiller. Sorry for you, that it won't be sooner to let you know.

By LOHENGR1N On 2013.03.27 15:35
Seawench, Did He remain awake during the root canal? Or did they put Him under? Many Parkinson's Sufferers have a very hard and long process of coming back from anesthetics. The Parkinson's brain does not respond well to being put to sleep with drugs. Valium is a drug and class of drugs that interfere with carba/L-Dopa and should be shied away from. Many Dentists don't know these things and seem to resent being asked Their knowledge about Parkinson's Disease in regards to what they use for numbing or oral surgery. More red flags and obstacles to watch and worry about trying to live as "normal" a life as one can with Parkinson's Disease. A call to His Neurologist should be made to discuss this problem and what to do now as soon as you can. I hope He turns the corner toward getting better quickly. Take care, best of luck and hang in there.

By stillunsure On 2013.03.27 16:23
Hello. Now I'm really concerned since we are going on a cruise shortly and my husband who hates flying (we're leaving from a different state) wants to take Valium to relax. He's done this in the past (pre PD) and it has always helped. He's still in the very early stages of PD, and only has tremors in one hand. His confusion is getting worse though, and he really is counting on his old standby, Valium. I guess I'll ask the new Neuro we're going to in 1 week, but would like more of your opinion(s) on the subject.

By stillunsure On 2013.03.27 16:31
This is for Seawench: How did they diagnose Atypical PD - MSA? My husband has had episodes of hypotention and has fainted a couple of times. Going to a new neuro next week since the old doctor diagnosed MSA without knowing everything. Maybe we just don't want to face it. He hasn't had any other fainting episodes lately and is not incontinent, but his confusion is bothersome (to say the least).

Would love your input. And thanks to all....

By seawench On 2013.03.27 20:53
Thanks for all your input. He appears to be improving. We are working to flush it out of his system asap, lots of fluids and I stopped one med because it prevents the valium from flushng out. Ironically it was the neuro who suggested the valium, She's usually really great and frankly we were in a situation where we really didn't have a lot of options. He was awake but they had to use quite a few shos to numb him, and he tends too be very sensitive to any med and it's quirks.

So lesson learned never use valium unless it's life or death and even then that may be a contributing factor. As for the oncerns for the PWP who wants to use it for flying- everyone is different. My husband has an A-typical Parkinson's called MSA- Multiple Systems Atrophy, which means his automatice function are deteriorating and shutting down.

One of the markers of the disease is Postural Orthostatic Hypotension or falling blood pressure due to his position such as sitting or standing. He will also have issues with breathing as his lungs work harder and harder to function. So the Valium affects both those areas - hence our difficullties. The info says it can take 3-7 days to purge out of your system with MSA I usually double that number. Asses the current health and isssues of your hubby and see if they might be a caution against Valium. What works today may not work tomorrow, but we try to make the best informed decisions we can.

By seawench On 2013.03.27 21:35
For stillunsure - Bob was originally diagnosed with Parkinson's, however he declined very rapidly and had a limited response to the parkinson's drugs. I remember that several folks in the PD support group who also had recent dx were regaining their lives as soon as the drugs kicked in. I've heard so many stories of relatively "normal" lives as Police officers, nurses ect as long as they kept the drugs balanced. Bob however was functioning much like someone who had PD for 15 years or more and the decline had occured in less that 4 years.

His symptoms did not include tremors, his symptoms originated with diffculty in urinating and ED which are the more common begining symptoms of MSA. As the disease progressed he had major problems with life threatening low blood pressure and labored breathing and as I mentioned before limited benefits from the PD drugs. When we went for an extremely thorough evaluation for DBS surgery they determined that he had MSA and I am comfortable with that dx as it makes more sesnse to me than the PD. When reading the description of MSA on the Mayo Clinic website I feel like it describes him to a T.

His progression through this disease has also been tracking with the website's predictions. They project that about the 5th year the patient becomes completely disabled and unable to work and that is exactly how we have experienced it. The disease has a predicted prognosis of 9-12 years. We believe we are in our 8th year and at the stage that he is in I am hoping to get 2 more years.

I appologize for the mobidity of this particular post, but I felt that I needed to be blunt and lay it out straight. As always there are lots of different shades to this disease and everyone's experience is both the same and different.

This forum has been extremely supportive and helpful and is one of the mainstays of my coping/info gathering resources. On here you will find Caregiver warriors, patients, advocates, activists, people who will fight to the very end, some who are just trying to get through one more day, proactive and reactive, all of which we need to both survive and maybe one day eliminate the disease. I love and appreciate you all.

For my part I am in the day to day trenches of making his life as joyful and full as possible, I find I am not much of a activist but I'll support those who write letters, petition the government and are advocates for our loved ones who are fighting this dreadful disease. I can answer questions and give a perspective from my point of view and hope it is helpful and that you are encouraged and less confussed in this struggle. Good luck in finding a diagnosis that fits as best as it can and finding a way to live an abundant live inspite of your circumstances.

By LOHENGR1N On 2013.03.28 00:21
Seawench, Tell Your Hubby to stop "tracking" with the web site prognosis! You "guys" keep up hope, maybe you'll find a combo of med's that will work for Him to give back some of what was thought lost and several more years of "normalcy" of life! I feel your post, Time is so precious! I've said before that the schedules and prognosis of time aren't necessarily right on. I'm kicking myself in the butt from time to time lately as Patriots Day comes around. That's my anniversary for noticing my "onset" of P.D. Patriots Day weekend of 1986. Going to begin my 28th year of living with Parkinson's Disease officially. Back then my Neurologist said I'd be on medication for the rest of my life. Being an indrestuctable young man of 33 I asked how long will that be? Answer back then? 15 years max! I said come on how about 25 to 30? I mean if He was going to sentence me at least give me a long one right? We'll see he responded, if you're extremely lucky maybe we'll just have to watch and see. Now I'm looking at the time passed and asking why didn't I say 35 to 40?

Not that I'm planning on checking out anytime soon but I'm not fooling myself or anyone else I'm failing more noticeable lately. If something happens now what can I say? "Hey Ferryman I'm not coming onboard You're mistaken?" He might have my ticket redeemable anytime between 2013 and 2016! That's what I asked for lol. I can't say no fair! I could say no fare but I'm not sure sticking around haunting those I told I was going to would be worth it. I'm rambling now so I guess What I'm trying to say is to heck with their schedules Live each day to the best of our abilities some are better than others and some days just plain suck but We do the best we can. Nobody asked for this fight we were just thrust into the ring so we fight on. Keep your chin up (it makes a better target that way ;) ) Take care, best of luck and hang in there everyone!

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By seawench On 2013.03.28 12:45
No worries. We aren't living by any website prognosis, I was just saying that we found that they were pretty spot on with our experience.

We endeavor to live each day to it's fullest, we are always hopeful and yet my scottish blood keeps me pragmatic. MSA is a little weird as there really isn't any drug or trial that offers any real hope or help. Most folks get a 1-2 yr bump from the L- dopa but after that it really doesn't help- which is one of the ways they differentiate from PD. Bob gets some help still after 3yrs but the amount is small and anything else just seems to create more problems. So we bump along.

P.S. I am hoping to drag him along with me in Oct '14 to Europe. I have 2 nieces who are graduating with thier Masters. One from the London Academy of Music and Dramatic Arts and the other from Trinity in Dublin with a Masters in Art History. The entire family is going and if it is even the least possible we will also. He is actually quite fun to travel with and we have learned to roll with the physical challenges.


By eyewuzrt On 2013.04.03 00:16 [Edit]
Beware of valium! The symptoms of long-term addiction - stone face, shaking, depressed mood, fatique, slow gate - are identical to the symptoms of early onset PD. Look for research from Great Britain. Unfortunately, doctors almost never ask pts. if they use this drug and how much when they evaluate them for PD. When my ex was diagnosed in 1987 at age 33, he was taking six to eight 5 mg. Valium during the night to help him sleep because he was so anxious. Several different doctors prescribed them for him. WaLa! He developed mild PD symptoms and was all too happy to get the diagnosis because he never liked working anyway. He studied books on PD and developed a textbook case ... amazing! Years later, he retired, right when the doctors predicted it. Today, he's still a benzo addict, still has the symptoms of a benzo addict, but he clings to the PD diagnosis because that's more socially acceptable and less controversial with disability. Too bad because a benzo addiction can be reversed; PD can't. Be sure you know what you have.

By jcoff012 On 2013.04.03 17:57
Sea wench, Carl just returned two hours ago from the dentist...he gave him lidocaine. He had him sit in a side office for thirty minutes after the root canal, but he had no side effects. Told him he wasn't going to prescribe any pain meds because PD and some meds do not agree..said if he has pain, to call him back and they would discuss an over the counter solution. So far, so good. Hope this helps.

By seawench On 2013.04.04 01:25
It's been 2 weeks and he is still having issues with Low BP and trouble walking (at all as opposed to walking with difficulty). I am hoping that the process will be simlar to what we deal with after a surgery so I'm giving it 2 more weeks to see if we have any lasting complications (read - losses of abilities)

Unfortunately the Valium was only given to enable better access to the tooth because of his inability to open his mouth wide enough. The lidocaine is for anesth and I don't believee that was an issue as he has had fillings with lidocaine and no problems.

His MSA-P is well advanced so even though he was declining slowly, it appears to be speeding up lately- sucks


By jcoff012 On 2013.04.04 09:10
Sea, all I can say is I'm sorry, for both of you. Try not to be discouraged, as life often gives us challenges that lessen with time. I only hope that this is just that for you...a temporary challenge.

Our son was told to "Put your affairs in order" right before his first cancer surgery and chemo/rads...However, although the cancer is not gone, he is still alive four years later, and has a new life, new love, and is buying his own business. So, where there is life, there is hope. All we can do is our best; I am sure no one with this disease wants things to progress. But, we watched my MIL rally many times and she although she, too, had setbacks, she lead a really full life for 22 years with PD.

Hugs and love and you know better than I that there is plenty of support here.


By dans316 On 2013.04.04 10:18
Is he taking anything for the low blood pressure. My wife, June, was put on Fludrocortisone for low bp in 2010. She visited several doctors for follow up care for breast cancer and none of them seemed the least bit concerned about low readings. Readings of 90/40 were not uncommon for her and she also had fallen several times.
Her Neuro doctor left the practice and she was assigned a new one. He immediately put her on the Fludrocortisone and now her bp is usually around the 120/80 reading. That was the first I learned that low bp could be related to PD.


By seawench On 2013.04.04 11:52

We have been putting off meds for low BP until absolutey needed. Beause his systems are deteriotating he is a risk for Hi BP and stroke with the meds. So we have been coping as long as it hasn't taken over our lives. but I think we are fast approaching the day when we will need to add the meds.

He hates drugs and is very resistant to adding new ones but he does recognize there are times when you just have to, therefore we are on very few and as small a dose as we can get away with.


By seawench On 2013.04.04 12:09
Jane - thanks for the cyber hugs. I get tired, frustrated and grieve. We are spending our energy and making each day as abundant as possible. We are not giving up but we also have no fear of death. We are also confident that we are in safe hands and willing to be used for His purposes.

Are there more things we could be doing? Yes. We weigh our choices. If something can improve his interactions with others and allow him to participate in activities - we spend the energy. If the expenditure of energy steals precious time and moments from us and the gain is nominal, I choose being present with him. He has no cognitive issues, and he is a lot of fun, my job as a resident manager allows me to be with him all the time. I am so fortunate to not have to find work that requires me to leave all day or leave the work force in my early 50's. I am so glad to have all this time with him and if I could keep him with me for 20 years or more I would.


By jcoff012 On 2013.04.04 17:55
Sea, it always amazes me how caregivers who have been at this so long have such wonderful coping skills. Bless you both.

I would image all of you can relate to this...this morning, I walked into our master after my early morning scan of email and reading the news, when I came around the corner to see my husband exhibiting tremors on his right side (pretty severe ones from the waist up). He didn't see me..he tried to steady himself by leaning against his side of the bathroom counter...then, as I backed out of the room, I heard an audible sigh...I went back to the office to cry, then made a noisier entrance back into the bedroom.

I said, "Hey, Gorgeous, you almost ready to go get Nigel?" He hesitated, but said, "Sure." In the 15 minute ride to get our grandson, I said, "You know, I am glad we are going to UCSF at the end of the month...I think someone better qualified needs to check out your right side now." He said, "Been trying to keep it hidden; when did you notice?" I said "For over two months, but more lately."

And so living with PD goes on. It broke my heart to see him struggle, yet put on a brave face.

I hate this disease. Jane

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