I'm so desperate o find an answer,Have 10 years of PD, always had a burn ing pain in mouth. nose,throat,esophagus at certain times, no answers from many neuro drsthen two or 3 years ago shortness of b reathe.heart racing, pressure inchest, several visits to er--no heart attack It starts with sweatin g, now so much more an d at least twice a day, can't walk, spasms in left foot{PD SIDE}, can;t swallow, left eye blurred,aching, left nostril cllosed, left ear into neck hurting, nerve pain thru shoulder down to hand Two years ago could take ativan & tylenol & stop, They diagnosedanxiety. Now everything is so severe. It occurs about 1 ^1/2 hrs after i eat, nearing the time my med wears off. I was on regular sinemet--125 every 4 hrs., never able to go out. I have Rheumatoid] arthristis. Left hand is frozen in a fist, so that throbs I'm now on Rytary hoping I'll have some kind of life. this is no a "PITY LETTER" just want to know if anyone has similar problems The pain is bad now sometime it last an hr. Befo
re it got so bad i could take another sin temet{quick acting} , but I had to take more & more,more side effects, I have learned so much from this web site. I get bad dykinesia if I take larger dosages. 'm losin g all hope as the drs have tried so many meds--causin g HI_LOW B P, dizziness, foggy head, Guess I'm looking for a mirac le. Excuse the writin g ,I use on ly one fin ger & my key board is acting up
Thanks for any response Arthur 84
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arthur84
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Arthur 84, that scares me. I hope you find resolution.
Many do seem to have arthritis and neck issues as I do. Strikingly similar symptoms.. Wondered if the cold weather makes some of our symptoms worse? Have you had any EEG? I had several. Diagnosis of anxiety? It can't be the cause.
Of course you have anxiety...who wouldn't enduring all this turmoil you describe!? It is a symptom NOT the cause! Why won't they take time to get to ROOT of cause....Hope you get real help
i suggest you go to a gastroenterologist and check out reflux. common in Pd and fits the symptoms you describe. they will tell you to stop eating citrus, chocolate, bubbly drinks, tomato and probably sugar. they will tell you not to eat large meals or eat after 7pm. they will tell you to sleep with your head elevated. they will give you zantac as anti-acid and maybe phazym (quite benign) to absorb gas which is bubbling up the esophagus. they may even give you a script for something stronger to use temporarily to get it under control so you don't go into Barretts syndrome (if you don't already have it). reflux often causes shortness of breath and feels like a heart attack.
if you have told your doctor these symptoms and he hasn't recommended the possibility of reflux, get another doctor. it is so common that not to consider it would indicate that he can't be very competent. if you are in the UK, i guess you are out of luck with that.
also, anxiety is a common symptom in PD. hard to deal with as medicating older folks with psycho drugs is tricky. the side effects can be awful. we use zoloft but only because it helps with OCD. most docs want to give something new and different but zoloft is old and works for us. i give don 1600mg l-theanine daily in divided doses. 400mg caps are available. i also supplement with taurine and magnesium. i also use lavender oil caps (Integrative Therapeutics) when he is really nervous....calms him right down.
Thank you forgiving me your experience. Mine is a little morethan anxiety, it gives me pain in my middle chest area, also can't swallow, shortness of beath,e It seems to occur when II need my med & the Rtary does't work very fast. It's orruring every afternoon now so I'm in bed as it makes me vey weak and I can't walk. so discouraging as it feel like a heart attack.I'm seeing a gastro dr next week as I can't eat. I will look into the lavender pills as I haven't been sleeping either.
I feel your pain. I said a prayer tonight that i might find some answers and there was your post describing exactly what I have been dealing with. i thought that I may be possibly going crazy, I feel sick all the time and it is getting worse. I was diagnosed the day after I turned 28, I am 42 now. My body has adjusted to all the meds and they either no longer work for my symptoms or they require a large dosage causing other issues. I have bad anxiety and Dystonia attacks almost daily. My life is a living Hell. The last med I was on was Stalevo which worked for awhile but got to the point that I was taking large dosages every 3 hrs and then one day it didn't work at all. i am now taking Rytary 36.25/145 but at a very high dosage... about 3 caps every 3 hrs and i try to make it thru the night taking as little as possible. My Dr is very concerned that I am taking too much but my legs will not work otherwise. I try to stretch out the dosage to 4 hrs (my Dr would prefer every 5 hrs) but I can't make it, my legs spasm and feel limp and lifeless. I have been in and out of the ER with little help. I have chest pains all the time, break into sweats where my clothes actually are wet, first i feel hot like I am on fire and then I start to cool down, clothes and hair damp from the severe sweating, and my temperature will drop to usually 96.7 but here lately at times 95.0. My normal temp is always been 98.6 on the dot. My heart has a flutter feeling, I get light headed, dizzy, can't breath, talk, walk and feel like I am limp and lifeless. I usually have a Dystonia attack which leaves me hurting and sick. I get acid reflux and throw up alot (daily). After about an hour after taking 3 Rytary caps I feel better for about 3 hours and then go thru it all again. The temperature dropping thing and the chest pains have had me worried but none of the ER docs seem that concerned, nor is my Neuro., I had a stress test done on my heart and wore a monitor for a day that showed that I have Tachycardia where i get panic attacks and my heart beat speeds up and gives that fluttery feeling. Recently the night sweats, day sweats and chest pain has increased. One Dr finally prescribed Propanolol 10 mg twice a day. Does anyone else take this med? My last trip to the ER they gave me Phenergan, which made my PD alot worse and i have still not been the same. I researched the med and found it shouldn't be given to PD patients at all. The hospital shows no record of that Phenergan injection, i think they found it was a bad mistake on their part. Then i got the flu, and I have been out of it, just as you described ever since. Eventho we are different ages, I feel exactly as you described and found it interesting that we both are taking Rytary. I have been struggling with Rytary and found good and bad points to the med, as with any. My anxiety is awful which causes my Dystonia to be worse. Please keep me informed as to what you find out that works or helps your condition, as I will with you. I also take Amantadine 100mg 2xs day for tremor, which has worked great for me, Ativan 2mg 3xs day for muscle spasms and anxiety, and Soma 350 mg as needed for muscle spasms. I was also told by an ER doc that taking a Benadryl will help with my Dystonia attacks when they happen and help counter act the bad side effects of the Rytary. It has helped when i have an attack for sure but not sure about the anti-dote qualities. Anyone else experience these type of symptoms? or have any advice? Anything would be greatly appreciated. At 42 I am feeling hopeless and like the Drs are at a loss. Rytary is what i need to stick with, and DBS for me personally is a no-go. HELP!!! Hang in there Arthur, maybe together we can figure some things out. Hope you are feeling better soon. Let me know how the lavender oil goes. God Bless
Donzim what parkinson meds does he take?,what times & how much. The sane patter is occurinng every day now, after eaing, 2 hrs after i takethis Rytary med. Terrible shaking[ getting worse, heart jumping, fast heart rate, fast breathing, pain,feels like a heart atta ck, can't move just lay o bed, have to take a anxiety pills,B P goes high{an xi ety pills lower the BP after a while, someties last over an hr.all limbs are like wet rags, limp, then I can't walk for the rest of the day. There's got to be some dr who knows how to treat or the reason. also, can't swallow, so I don't eat, have noappetite. I personally think it.s vegus nerv e disease, I sweat, then get cold. thanks for all replies I can & to those who have already replied. I haven. found NWL yet.Arthur 84
don zim takes rytary and does very well on it but he will get extremely anxious and tremory during the hour before the dose.. maybe your dose isn't right for you. we find that the hour before dose when the dopa is reducing that using theanine in substantial doses (300mg) every 3 hrs, making sure that he gets it 1 to 1 1/2 hrs. before rytary to fill in the gap. it last in don for about 3 1/2 hrs and takes about 45 minutes to kick in, hence the 1 1/2 hr before rytary dose. it is amazing how much it helps. wish i had known about the large doses before, we could have saved him from 2-3x a day of 'panic attacks' including heart palpitations, nausea, tremors, etc. his cardiologist says it is very good for the heart as well.
one thing to take into consideration is that rytary must be carefully monitored in people who have afib. in fact, in those who have a history of it, they recommend you begin the drug in cardiac care so any event can be handled. don's dr. thought a monitor would do it and after a week, he knew it was ok to take rytary.
Dear Arthur84! Every now and then I have similar symptoms - shortness of breath, severe shaking, rapid heartbeat. I have noticed, that this occurs when I miss the dose of Amantadine. I switched to Gocovri recently. Sometimes I just forget to take it and I am experiencing all of the above and more. Try Amantadine or Gocovri. Hope this helps.
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God Bless
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