I was diagnosed on my 28th BDay as having PD and I will be 45 this year. I used to not question it too much but this past year has been more than difficult and I am having new issues that make me wonder if I have PD or some type of anxiety disorder. It all started with a tremor that started in my right hand. I had gone thru my Mom dying after a 2 year battle with A.L.S. (I was 17 and just graduated from Highschool), then my 12 year live in relationship ended, my Best Friend's father committed suicide with a shotgun in front of me, and I had to go thru back surgery and serious back pain issues on a work related injury and lost my job. I was more than a little stressed out and it was during these events that I started shaking on my right side. It started out only on occasion that my thumb would shake (around 18 years old) and then it later turned into a constant tremor on my right side where my whole hand and arm started shaking all the time. I had problems using my arm while brushing my teeth and later was dxn'd as having Parkinsonism and then later told that I had PD. ]
After I started taking Sinemet my tremor and symptoms greatly improved but my anxiety has been out of control since i was little and has gotten much worse over the years. My anxiety is so out of control that my Nuero didn't want me as a patient. He said that my problems were out of his knowledge and schooling and that he could no longer help me and he felt as though i was over medicating myself.
However, my tremor/symptoms were so under control that my current Nuero swore I didn't have PD and was misdiagnosed. He wasn't even going to take me as a patient but asked me to come in to see him a 2nd time, after he cut back the Rytary dosage, and asked that i not take my meds on my 2nd appt to see him. My tremors were so bad that he then believed that i did in fact have PD and took me as a patient.
Last Sept I was told I had Breast Cancer and my PD symptoms started getting worse. My tremors have returned and are now in both hands and in my right leg. I was told it was the stress making my pd seem worse and that after my Cancer treatment was over I would more than likely return back to my routine PD and symptoms.
It has been almost a year since my Cancer surgery, radiation treatment, etc and I am still getting worse. I don't feel like myself anymore. It has been almost 17 years of coping and dealing with PD and I can believe how worse things have gotten.
My symptoms are different now tho, my tremors will start all of a sudden and sometimes they are pretty severe. They can be totally gone and then start all of a sudden, usually when i know it is close to time to takes my meds. If i start thinking too much about things i start shaking and I used to be able to calm myself down and then they would disappear again without having to take my PD meds. Sometimes i can calm myself down enough that I can go as long as 7 hrs in between Rytary dosages. Is this normal?
Other times, here lately there are times when the Rytary doesn't seem to work at all. Even taking as high of a dosage as 5 capsules of 145mg at a time every 4hrs. (this was ok'd by my DR but seems like an awfully high dosage to me) so i have went back to taking 4 capsules of 145mg of Rytary which also seems like it is a high dosage and i often have episodes that are like severe panic attacks but will twist my body into weird positions and bend my head and neck backwards until it makes popping noises and spasms my legs and arms into odd positions and causes my feet to go up in the air. I was told by an E.R. doctor that i was having a Dystonic reaction to the Rytary or Carbidopa levadopa and given Benadryl as an antidote to counteract the medication but was also told my current Nuero and another Dr that i shouldn't take Bendaryl because it takes Dopamine out of the brain and isn't good for ppl with PD.
My PD medications often seem to make me feel more anxious and less able to control my PD tremor and symptoms, and makes my head feel dizzy. It feels like my body is fighting against the medication but if i relax and the Rytary does work right I usually end up with Dyskenesia where i bob my head uncontrollably and sway around like Michael J. Fox. Which was diagnosed right before I was diagnosed, making me feel like maybe this is all in my head and something that manifested thru anxiety. Now my attacks have gotten so bad that i often have to have shots of Apokyn to make the Rytary work. The Apokyn makes me feel like i am going to throw up, clammy and sweaty and at times makes the room spin. Plus there is a possible conflict with my current hormone treatment that I am currently on for the next 5 years as part of my Cancer treatment. i have to have EKGs done to make sure the 2 medications don't cause an Arrhythmia heart condition. I also have developed Tachycardia, where my heart beats too fast and i am on medication for that now as well.
I have exhausted the E.R. at the Hospitals closest to where I live because of having these attacks and anxiety issues and they all know me and just kind of disregard me as having "severe panic attacks" and put me in the waiting area at times with my head bent backwards and in severe pain. I have had to call my Boyfriend to come and give me a shot of Apokyn because the Hospital ER staff refuse to do it and I cannot physically give myself a shot during an attack.
Recently i had a strange thing happen at my current Nuero's office. I was starting to tremor and it was time to take my Rytary but the nurse asked me to wait to take my medication since the Dr would be in shortly and that way he could see me off my medication. I have been seeing this DR for the past couple of years and feel very safe in his presence. So I held off taking my meds and when he came in my tremors went away and I actually went from feeling like i needed my Rytary to having Dyskenesia and ended up not taking my medication until many hours after that. I went 3 more hours before i took my pills, a total of 7 hrs with no medication. My Dr said that isn't unusual that PD is unpredictable like that. I didn't think that was possible with PD but maybe I just don't understand my illness. It really has thrown me for a loop and confused me and makes me sad that i can go that long between medication when i feel safe and secure but at home where I have lots of anxiety i often feel like i can't even go 4 hrs between dosages.
It feels like since i started taking meds for PD that i have gotten worse and have more health issues now than before i started treatment. It makes me wonder if this is all Parkinson's related or is it something else? I really wish there was a test to confirm my pd diagnosis.
I know this is like a short novel to read but i don't know how to explain what i have been dealing with in a shorter version. So if you took the time to read my post, i greatly appreciate it and any advice you can give or personal experience that you can share with me to explain what i am dealing with because after being seen by 5 neuro Drs and several ER visit later I still don't have any answers.
Written by
Darkflower
To view profiles and participate in discussions please or .
I do not have a neuro condition. I am the mother of a son that I lost to PSP. I skim the postings for information on new treatments and supplements. Since you had no response, I just wanted you to know that you were read.
Darkflower, I will hold you in my prayers and positive thoughts.
I think that neurology and neurological diseases are just being explored. Little scientific information is known. I know that for me "THE UNKOWN" is difficult to accept. I want answers and I want them NOW. Science, at present, can't accomodate me. And maybe also you.
I am sorry that you have had so many challenging health issues.
Thank you enjoyslalud for the response. It touched my heart and I totally agree with what you wrote. I am very sorry for your loss. Hopefully answers are right around the corner for all of us.
Anxiety is a common issue for people with Parkinson's and high anxiety is common among people who are tremor dominant. While DATscan is not 100% foolproof, it would give you more confidence in the diagnosis. I think anyone who's been through everything you've been through would have anxiety issues so you may be experiencing a combination of Parkinson's triggered anxiety and situational anxiety, perhaps explaining why your's is sometimes severe. My anxiety comes and goes, often suddenly and I'm sometimes surprised at how bad it gets over seemingly nothing, like traffic congestion. So if you're going through real trauma like cancer and the other things you've described, it's understandable and you're doing pretty well, considering.
If you put "anxiety" in the search window, you'll find a lot of threads/discussions about it and you get a lot of ideas for things you can try, like perhaps, magnesium. I believe there's a large number of things you can take for anxiety which may help some.
When I was younger they had me on every anti-depressant known. All they did was make me physically ill. I am currently taking Ativan, Valium, Buspirone, and Propanol and have been on other meds in the past. I have been to counseling, psychiatrists, taken Mindfulness classes, meditation, Tai-Chi, Chi-Gong, Bio-feedback, read many books and listened to inspirational CD's. None have really helped. Although others have said that I have improved on how i deal with my level of anxiety I don't see much change. It is very frustrating.
I have also heard that one of the side effects of Rytary is anxiety.
Benadryl is not good for PWP. Wanted to write that before I forgot. What was the reason for switching you to Rytary? Were you ever stable on it? I couldn't take it because it was unpredictable but I only took it for a short time. You have been through a lot and it is not surprising that you suffer from anxiety. Have you tried medical cannabis or changing your diet radically? If you have been reading HU regularly I'm sure you have seen posts about high dose thiamine. I mention it specifically because it is supposed to help with anxiety.
Juliegrace, The reason I was put on Rytary was because I have built up a tolerance to all the other PD meds that I had previously been on. At the time I was taking Stalevo and it was not working very well for me after being on it for approximately 5 years. It was kinda scary because I had exhausted all other medicine options and it was perfect timing that the new drug Rytary had just been approved and was new on the market. It had only been out for just a short while and I have been on it ever since. I felt like my prayers had been answered. That has been a few years ago now and once again I find myself in the same situation. I really need them to come out with a new medication and quickly. My Dr is pushing me to have the DBS procedure done but that scares me and I don't feel like emotionally I could handle such a procedure at this time.
I have previously been on Sinemet, Sinemet CR, Mirapex and Requip (both Mirapex and Requip made me so sick with flu like symptoms that I couldn't tolerate them. I was sick o my stomach and throwing up constantly). Then I was put on Stalevo and then Rytary. I also tried Amantadine, in addition to the PD meds I was currently taking to help with my tremors. It did help with my tremors but it also made my feet and legs start swelling up and then one morning I awoke to find my face so swollen that one of my eyes was almost completely swollen shut. I even tried going back to Sinemet after I had been taking the Rytary for about a year, hoping that the break from taking it would reset my body to accepting it again. It unfortunately didn't work and i have been back on Rytary ever since.
I have always been unhappy with how Rytary makes me feel when i take it and it seems unstable to me. I always feel strange and foggy headed now when I take it and like the bottom could drop out at any moment. It especially doesn't handle my anxiety well and seems to make me feel even more anxious times. My favorite time of the day is the evening when it is time to to sleep and shut all of this unsettled feelings off. The worry goes away and I am back to my old life, before PD took over, and if only for a short while I am back enjoying my old life once more thru dreams. I also like when i first wake up in the morning because my head thinks and feels like it used to before I started taking this pharmacy of drugs that have taken over my nightstand and stolen all I used to be. I feel like me for a few hours and then i start to tremor again and the nightmare returns.
I am new to this site and don't know that much about alternative options and high dose thiamine. I am hoping to learn some new things tho, so any info shared is greatly appreciated. I have made one friend on this website that has tried to lead me in the direction of alternative medications for PD and anxiety but sometimes I don't understand all the factors or info that is shared with me to be honest. This member lives across the globe from me and sometimes it is hard to understand or absorb everything via email.
I consider myself to be an intelligent woman but must admit it would be nice to have a friend close by that could teach me more about holistic meds and dealing with PD issues on a one on one basis. Finding a holistic doctor where i live has been impossible, none of my Drs are knowledgeable nor do they believe in 'holistic' remedies and tell me that I am on my own in that department. I am afraid I will mix the wrong herb or vitamin with modern medication and make myself sick.
I also know my attitude needs a positive makeover. I constantly fight with my inner dialogue to be positive. I grew up with 2 parents that fought and argued. Well my Father was the fighter and my Mom took the abuse of his name calling and cheating and my Mother because of her depression was an alcoholic. I digress, I apologize for getting off topic. My point was there was always upset in the house and it doesn't surprise me that my Mom died from A.L.S. and now i have the same fate as she did dealing with Parkinson's Disease.
YES! I have an akinetic presentation. I noticed that my right hand would trip up a bit when typing and my marathon speeds kept getting slower after 40. At about 44 one of my neighbors noticed that I wasn’t moving my right shoulder when I was out running. I have almost always had physically demanding jobs. Long story short, I was finally diagnosed as having PD when I had thought that I just had IBS band syndrome and repetitive stress injury. I am now 53. Last year I needed to take Sinemet every 2 1/2 hours so my neurologist put me on Rytary. I had two weeks off. While I was off I was ok though I thought that 9 capsules of 145 might be too many so I emailed my neurologist and started with 6 or 2 3x a day. The first day I went back to work I was ok until there was a stressful situation. I was out in a company vehicle. I had almost uncontrollable movements. I barely managed to call the office. I had to cool my heels and hide in the vehicle until I could safely drive back. A supervisor told me I could take another couple of days off. Again long story short: I ended up having to take a “fitness for duty exam”, was accused of being a drug user and kicked out of a Starbucks, was detained for 4 hours after work and was examined by a psychiatrist police ride along and was told by co workers that I was suicidal, the police psychiatrist found differently, thank god, had physical reactions that appeared to be anxiety attacks while I felt calm on the inside that after about 3 months metamorphosed into actual anxiety attacks, was accused of having dopamine dysregulation, that my attempts to lower my dosage of Rytary by taking only 2-3 capsules and supplementing with 3 -4 Sinemet tablets after 3 horrible months on Rytary and my subsequent attempts to get back on just Sinemet were in fact attempts to get more and take more of those medications and that my anxiety was not due to Rytary by my neurologist. I am back on Sinemet, thank god, and I have a new neurologist. I still have a little trouble with anxiety, but I am managing without anxiety medication. I have only a little bit of mild dyskinesia sometimes. Hopefully, I can get DBS soon and it works well for me. It didn’t do much for my cousin Frank. But I’m living alone with my two dogs and am almost done with all of my disability retirement hoops. I was going to try to work for another year or two, but Rytary and trying to fight both some questionable management techniques and my neurologist at the same time just knocked the stuffing out of my resilience. My theory is that the time release function doesn’t work well for some people, so you end up with way too much getting dumped into your system. Rytary was a living hell for me and more people need to write down their experiences with it so that their neurologist believes them and that they aren’t caught by surprise if they have the same problems we had.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Medication addiction 
WHAT IS YOUR BEST SLEEPING AID? Zzzzzzzzzzzzzzz!
Diagnoses , vis a vis ET 
PEMF mat therapy update
