Husband so sick but not sure what’s going on - Cure Parkinson's

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Husband so sick but not sure what’s going on

shirlzoni profile image
99 Replies

Hi this is my first time posting but I’ve been reading for a long time and I’m hoping someone here can shed light on what’s happening to my husband. He was diagnosed in 2013 with early onset (age 57) idiopathic Parkinson’s (rigidity and no tremors) and put on Sinemet and had two months of feeling better than he had in a long time and then went downhill from there.

Since that two month honeymoon period he has been given many different doses and dosing schedules of sinemet but never felt well or had good symptom management and eventually developed mild dystonias and dyskinesia’s. He also developed severe anxiety, shortness of breath, rigidity, and gastroparesis, none of which he had prior to his diagnosis. His movement disorders specialist said these were off period symptoms so she tried him on Comtan which made him manic so she took him off that and switched him from sinemet to Rytary. He was put on klonopin to help with rigidity in his trunk muscles and eventually given trazodone and remeron for insomnia.

He felt better initially on Rytary but again after a couple of months he relapsed and developed the above described symptoms and after several trips to ER for high blood pressure his movement disorders specialist decided that the symptoms were caused by anxiety and she said she couldn't help him anymore until he was seen in psychiatry and treated for the anxiety disorder.

He never had anxiety attacks prior to starting levodopa so I feel certain that this is medication related but we’ve tried fiddling with his doses and dosing schedule and nothing seems to help. When these symptoms started they would always come on in the afternoon at a certain time and he would take the klonopin to help knock it down before it got too bad but now it’s starting in the morning and the klonopin isn’t really helping that much and his whole day and evening is spent suffering horribly. His symptoms are as follows: anxiety, shortness of breath, flushing, problems regulating his temperature, trunk tightness, chest pain, bloating, rigidity, shoulder pain, foot inversions, clawing and toe curling to varying degrees, slurred speech, soft quiet voice, restlessness, very low blood pressure in the mornings (70s/40s) which can climb to 150s/90s by afternoon. He has lost so much weight over the last few years he is down to 115 lbs and he is 5’11” so he is nothing but skin and bones.

We can’t get anyone to take seriously how much he is suffering and the toll this is taking on his health in general not to mention mine. None of his doctors seem concerned about the weight loss and I feel that if something isn’t done to get him stabilized and in better condition he may succumb to something or there may be an underlying condition in addition to the PD that is being overlooked.

his current medications are Rytary, Sinemet rescue for Rytary dose failure (which is often), klonopin, lexapro, florinef, lubiprostone, sennakot, miralax, trazodone, remeron. We are stuck in a nightmare that has been going on for years now and yet his neuro said he was stage 2 on his last visit in June so I don’t understand why he is so sick and so disabled at this point? He can still walk and drive when he’s up to it but most days are spent sitting in a chair with a pained look on his face or pacing around the house slumped over using his dads old cane. I don’t know what to believe anymore. Is this undertreated PD I’m seeing or medication side effects or klonopin withdrawal or a mental disorder?

Any help or insights would be greatly appreciated. Many thanks for reading all this!

99 Replies
House2 profile image
House2

He’s on way too many meds, Google poly pharmacy & find a PhD pharmacist to consult with.

shirlzoni profile image
shirlzoni in reply to House2

House2 thank you for replying. We consulted already with a phd pharmacist at one point and at that time my husband was given gabapentin along with everything else but he had to stop it due to swelling in the extremities. It seems that all the doctors do is give him drugs instead of looking for the cause of his symptoms. I forgot to include lunesta in the list of medications my husband is currently taking.

Juliegrace profile image
Juliegrace

Please read this post and look through beehive23’s other posts about rytary.healthunlocked.com/cure-par......

I

shirlzoni profile image
shirlzoni in reply to Juliegrace

Thank you Juliegrace. I have read this post from beehive23 and others on here about Rytary but I’ll read them again. We’re trying to figure out if the rytary is causing these symptoms or if he is under medicated for his PD or what is going on. Many thanks for replying!

Kia17 profile image
Kia17

Sorry to hear about difficulties you and your husband been through. Does he take any medications for his anxiety?

shirlzoni profile image
shirlzoni in reply to Kia17

Hi Kia17 thanks for your kind words. My husband takes lexapro and klonopin for anxiety but they don’t help much at all. He has tried other antidepressants but most of them make him sick. The fact that his anxiety is not mitigated by the meds he takes for it makes me think it’s actually a side effect of rytary or something else he is on. He never had this before starting levodopa.

park_bear profile image
park_bear in reply to shirlzoni

There been many posts here recently of people suffering terribly due to levodopa overmedication. This includes but is not limited to Rytary. This is another typical case - instead of doctors reducing the levodopa dosage and getting it right they just throw on a bunch more meds which only serves to complicate the matter. There are so many meds involved here I would only be guessing as to how to taper them safely. That said, I do believe he needs to reduce the number and quantity of medications he is taking.

I should add that getting levodopa levels right is difficult because a symptom of over medication - dystonia - is similar to the dystonia of under medication. In my experience, which it is can only be determined by the patient and the caregiver, by observation of when it arises in relation to the timing of the medication. If symptoms occur around the same time as the peak plasma levels of levodopa that is an indication of over medication. But, if you go to the doctor and simply say I am having these symptoms, the result will be an increase in dosage which would be exactly the wrong thing under the circumstances.

shirlzoni profile image
shirlzoni in reply to park_bear

Thank you park_bear for your insights as to how to tell if dystonia is from over or under medication. It’s been terribly confusing for us to figure that out especially since my husband frequently reports feeling a dose going in late or not at all. In those instances would one make the assumption that the dose did indeed go in on time and calculate peak levels from there?

park_bear profile image
park_bear in reply to shirlzoni

I reread your post. The breathing issue is also a sign of Rytary overdosage. See my new post here: healthunlocked.com/cure-par...

He has so many different signs of dystonia - trunk, toes curling and pain – these also raise suspicions of overdosage. How is his dystonia first thing in the morning versus toward the end of the day? His levodopa level is likely to be lowest first thing in the morning and highest late in the day.

What is his Rytary and Sinemet medication regimen – amounts and schedule? If he is taking Rytary too frequently that can result in overdosage due to a "stacking" effect.

Finally, his blood pressure pattern is indicative of orthostatic hypotension - loss of blood pressure upon standing. This is a separate matter we can address later.

shirlzoni profile image
shirlzoni in reply to park_bear

Love your posts park_ bear…so informative! To answer your questions my husband has little to no dystonia first thing in the morning. Occasionally he will get toe curling after getting up but that’s not the norm. In fact he looks and moves remarkably normally first thing when he gets up. His face is not masked, he is standing tall and not slumping over and he moves in a fluid manner. His speech is normal and his mood is good. As the day progresses he becomes more and more PDish and by the end of the day I barely recognize him and he looks forward to knocking himself out with the trazodone, remeron, and lunesta just to get some relief.

His rytary dose and schedule is two 48.75/195 caps five times a day. He will sometimes add 1/2 to 1 whole sinemet 25/100 once or twice in the day thinking he must need more levodopa. We are now talking about dropping one of the rytary doses and spacing out the other four to see if the stacking phenomenon is the cause of all this.

Thank you so much for putting up all that info and the links for us to refer to. It’s such a help.

park_bear profile image
park_bear in reply to shirlzoni

Thank you for your kind words!

At this point I find the evidence for levodopa -induced dystonia to be convincing. I agree reducing the frequency of his Rytary dosage is appropriate.

Kia17 profile image
Kia17 in reply to shirlzoni

Thank you for your reply. Have you tried B1(Thiamine)?

shirlzoni profile image
shirlzoni in reply to Kia17

He is taking 100 mg of thiamine daily for now. We tried ramping up his dose of that a year ago but he got the jitters at some point and would not take it at all anymore for a long time. I’ve been able to get him back on a dose of 100mg successfully and we plan to work on that once we get his PD meds figured out.

Godiv profile image
Godiv

I’m so sorry. That sounds awful. And I’ll tell you I’ve never had an anxiety attack like what he is going through. It’s awful but you may have to keep shuffling doctors or try to find one who’s really good: a movement disorder specialist. And even they tend to over medicate of course. I was just reading about the best places for neurology and Parkinson’s services and I’m pretty sure they said the Mayo clinic is the top place. In this country. Maybe approach it from that angle and work from there. It’s really hard and I’m so sorry. I’ve never been satisfied with Rytary especially or even Sinamet. Of course it must be frightening to see him deteriorate. I hope you can find some help or someone can think of someone or some thing for you and him.

shirlzoni profile image
shirlzoni in reply to Godiv

Hi Godiv thank you so much for the kind words of support. This is all very frightening indeed. Funny you should mention the Mayo Clinic. Earlier this year we bought Dr. Ahlskog’s books and have learned a ton from them. We are seeing a movement disorders specialist now but ever since she decided the problem is strictly psychiatric we can’t get her to help us anymore. We’re so thankful for the books and the support we’re getting from this discussion forum.

Godiv profile image
Godiv in reply to shirlzoni

You’re very welcome! There are a lot of super smart people on this forum. I get a lot of information and advice from them. And they’re all willing to help if they can. The thing is, if you go to a psychiatrist and you may have noted this, you’ll get more drugs. Or he will get more drugs. One of the users likes the Apollo Nuro tech for anxiety. Think that’s what it’s called. It’s like a watch you can wear on your wrist. I wear it sometimes and I’m not sure if it works super well for anxiety but it sort of helps I guess it’s a distraction because it’s humming away on your wrist. Really vibrating. But then again if it’s not really anxiety… Also there’s the coronet device for photo bio modulation. It’s a helmet that you wear that exposes the user to far red and infrared light I think. I’m terrible describing these things.. A lot of people here have found some relief with it and I wondered if it would help his mood. Unfortunately it’s made in Australia so you have to wait a bit to get it. That might be worth looking into. And somebody may have already told you about it and I just missed it. I just wondered if you would help his mood a little bit. Or, even just morning sunshine. I wish I knew more about all of that. Anyway that’s interesting that you’re looking at the mayo clinic. OK so it is the movement disorder person who is wanting you to see the psychiatrist. I mean I don’t know everything about anxiety attacks but good heavens that sounds unbelievable.Maybe it’s worth going just to see what they say but take it with a grain of salt? I guess for now that would get you back in that movement disorder doctors good graces. I don’t know it’s so frustrating. I’m so sorry. Keep posting in letting us know what’s going on. And the wiser and more knowledgeable folks will definitely help and chime in as you post. I know the answers haven’t come quite yet but still your husband is very lucky to have you on his side and trying so hard to get him healthy again.

shirlzoni profile image
shirlzoni in reply to Godiv

Wow thank you for all those neat suggestions for alternative treatments for anxiety. I’ve never heard of most of them but will definitely look into them. I have a fair amount of anxiety myself so I may want to try one of those as well.

My husband had no choice but to see the psychiatrist for the last five years because his MDS refused to do anything more with his meds until his “psychiatric condition” was well managed. He tried every anti anxiety medication out there including buspar, gabapentin, and klonopin, sometimes all at the same time but nothing helped. He did group counseling and private counseling and still has weekly appointments with a psychologist and listens to meditations and mindfulness breathing exercises with no resolution of his anxiety. To this day his MDS insists the problem is psychiatric despite the fact that nothing they try on him works and he never had anxiety before going on levodopa. So we’re on our own with this one.

Many thanks for the kind words. I just want my husband to enjoy life again and now I feel very hopeful that it will be possible.

Godiv profile image
Godiv in reply to shirlzoni

Oh that’s awful. Since he’s tried everything, it’s very dismaying. I hope you can bypass them and go to the Mayo folks or whoever you pick. I’m sorry I took so long to respond and I will be back again apologies, but yes I mean you need some hope and more importantly help. I feel bad for both of you. I’m trying to think of what little else I know...

shirlzoni profile image
shirlzoni in reply to Godiv

You've been very helpful and the support is everything.

Tryguy profile image
Tryguy

Wow.. this sounds like me in some ways… I have Been doing ok, and then thought I needed to ‘up’ my dosage due to some dystonia which I have never had. But then I started getting dyskinesia which for me happens when I over medicate. I don’t do Rytary or any other thing than Selegeline.(and supplements). I take CDP choline which helps probably too much, because when it works, you can lower your med because you get dyskinetic due to the improvement. So it’s a game..

I just got off my bike and thought I was going to drop lie a rock. Breathing is difficult and… it’s really crazy.

shirlzoni profile image
shirlzoni in reply to Tryguy

Hi Truguy thanks for sharing your experience with reading your symptoms and determining if you’re over or under medicated. How much CDP choline do you take? It sounds like it somehow lowers your requirement for levodopa which would be great. Good for you riding the bike! Hoping to get my husband back on the bike and doing power moves once we figure this out.

JeanieBeanie profile image
JeanieBeanie in reply to shirlzoni

Tryguy is so right. After living for 28 years with my husband with PD we find less is more. He only takes Sinemet plus (25/100) 2 and half plus 5mg Mucuna about 5 times a day and some during the night. He also takes Silegeline 1 a day which he would not be without. He doesn't suffer depression and thinks it is because of this.

shirlzoni profile image
shirlzoni in reply to JeanieBeanie

So encouraging to hear that your husband is managing well for so long with minimal meds JeanieBeanie! Thanks for sharing that.

Godiv profile image
Godiv in reply to Tryguy

Hey try guy, I hadn’t heard that CDP Choline helps dystonia or dyskinesia. That would be awesome. But do you take it in the morning or like right before you’re going to get for example dystonia? Or during? I am also curious about how much you take and if it has to build up or works quickly. So if you have any information you wouldn’t mind sharing that would be great. Thanks so much!

sleepmaster4 profile image
sleepmaster4

pubmed.ncbi.nlm.nih.gov/824...

Weight loss in patients treated long-term with levodopa. Metabolic aspects

"Seven aged Parkinsonian patients treated with levodopa (average dose 3-4 g daily for 1-3 years), showed a considerable weight loss. They were compared to two control groups of elderly and young volunteers after levodopa stimulation and after oral glucose tolerance tests. It was found that after levodopa administration the plasma free fatty acids, glucose, growth hormone and cortisol were significantly higher in the Parkinsonian group than in the young control group and only slightly higher than in the aged control group. It was also found that the serum insulin was significantly higher in Parkinsonian patients than in the aged control group. We think that the metabolic disturbances found in Parkinsonian patients are not solely due to levodopa administration but may be due to ageing processes. We suggest that weight loss in the older Parkinsonian patients treated over long periods with high doses of levodopa, is due to the enhancement of the lipolytic activity of the ageing fat cells caused by high levels of circulating insulin."

shirlzoni profile image
shirlzoni in reply to sleepmaster4

Thanks so much for this sleepmaster4! This explains so much. My husband has had two urinalysis tests in the last few months that have shown ketones that are 5 times higher than the upper limit of the range. The doctors couldn’t care less but I saw it as evidence that his body is in starvation mode for some reason even though he eats three meals a day and snacks. I’m going to ask for an insulin test next time to see if his is high.

His MDS doesn’t even seem to know about this because she was stumped when I asked her why he is losing so much weight. None of his doctors seem to care except the ER docs who were concerned about it but said to follow up with primary care and that’s where the ball gets dropped. Thanks for this info!

House2 profile image
House2

Using escitalopram together with traZODone can increase the risk of a rare but serious condition called the serotonin syndrome, which may include symptoms such as confusion, hallucination, seizure, extreme changes in blood pressure, increased heart rate, fever, excessive sweating, shivering or shaking, blurred vision, muscle spasm or stiffness, tremor, incoordination, stomach cramp, nausea, vomiting, and diarrhea

shirlzoni profile image
shirlzoni in reply to House2

We considered that possibility House2 but the psychiatrist said he’s not taking big enough doses of anything to cause that. But it did cross our minds so thanks for the reminder about that.

Can’t wait to see if lowering the rytary and spacing it out makes him sleep better and have less anxiety so that maybe he can reduce or go off these other meds.

faridaro profile image
faridaro

So sorry about your husband's suffering and getting no help from medical professionals. But he is fortunate to have you searching for answers and I hope you'll get some help here. Since he feels better in the morning there is definitely a need to have someone knowledgeable go over his list and dosages of medications.

I wonder if he can eliminate his sleep meds and try melatonin instead. There is a good study on melatonin treatment in PD (initially posted by Art)

researchgate.net/publicatio...

shirlzoni profile image
shirlzoni in reply to faridaro

Thank you for the kind words faridaro. I’m getting so much help and support here already I wish I had posted a long time ago.

My husband is taking melatonin along with the rest of the bedtime cocktail. He tried that first but it wasn't enough. Now I’m thinking that the sleep problem might have been caused by too much dopamine so I’m hopeful that we can eliminate or at least reduce the sleep meds at some point once we get that problem resolved.

kevowpd profile image
kevowpd

Almost every (and possibly every) symptom you've listed is recognised as a PD symptom. That doesn't mean medicine (or combos of medicine) cant cause them also, but in my view its unlikely that too much rytary is causing all of that.

You say that certain symtoms didnt pre-date the levodopa use but if i am reading the info correctly, he is 9 years post commencement of levodopa. Well, the disease has had 9 years to progress and a lot can change in 9 years.

I think you might need new doctors. The people on here can only offer educated punts. Well intentioned educated punts, but still punts.

shirlzoni profile image
shirlzoni in reply to kevowpd

Yes what you’re saying is why this is so maddening a problem to figure out. Is it PD or a medication problem? If we fail to figure it out despite the best efforts of our new found friends here we will leave our HMO and seek help elsewhere. Thank you for sharing your viewpoint kevowpd.

House2 profile image
House2

Remeron doesn’t mix with trazadone either

shirlzoni profile image
shirlzoni in reply to House2

Fortunately he is on a small dose of each but it can’t be good to mix so many drugs together.

Dragona profile image
Dragona

For anxiety my husband takes 20mg lithium orotate and 500mg ashwaghanda, magnesium l’ threonate

Dragona profile image
Dragona in reply to Dragona

Forgot to say he started symptoms of PD about 8 years ago but he has never had any PD meds I read so many problems with them I thought it better to leave well alone, he doesn’t get dyskinesia, he did get rem but niacin seems to help, he doesn’t have any sense of smell, he used to get like electric shocks but magnesium seems to help, tremors are very very mild, he does lack energy and his memory is awful we are in touch with memory clinic and he is having scans next week, they think it is dementia and although he’s never been diagnosed for pd they think it is connected, anxiety was a problem but that is better with the tablets I mentioned, he does take many more supplements but on the whole he looks really well and no one would know he had pd, is this because we avoided meds I don’t know but don’t want to rock the boat

shirlzoni profile image
shirlzoni in reply to Dragona

Wow I so relate to your approach Dragona! I didn’t want my husband to take meds either but after trying some alternative treatments with no improvement he relented and went on meds. It’s been a roller coaster ever since.

Thanks for sharing the supplements your husband is using with some success. Hope the memory clinic can help and I wish you and your husband the best.

Dragona profile image
Dragona in reply to shirlzoni

Thank you who knows he may have to go on them but when i read all the problems on here I think its not worth it, he takes B1 and more but hes not got any worse in fact i see a lot of positives, maybe he's just lucky i will never really know

shirlzoni profile image
shirlzoni in reply to Dragona

How much b1 does your husband take? I think that’s supposed to stabilize the PD and prevent progression if one is on a therapeutic dose of it. At least that’s my understanding of it. So you may be able to avoid meds altogether but if not you know that they need to be used judiciously and not the sledgehammer approach which is so common.

Dragona profile image
Dragona in reply to shirlzoni

He takes 500mg never tried any more

House2 profile image
House2 in reply to Dragona

Citicoline is taken by mouth or given as an injection to help memory loss due to aging, improve vision in people with glaucoma, and help with recovery in stroke patients. It is also used for Alzheimer disease, Parkinson disease, bipolar disorder, lazy eye, and other conditions of the brain.

shirlzoni profile image
shirlzoni in reply to House2

House2, do you know how much one should take of this for a therapeutic effect?

House2 profile image
House2 in reply to shirlzoni

According to WebMD, 1000-2000mg

shirlzoni profile image
shirlzoni in reply to House2

Thanks for getting back to me on that

gaezy profile image
gaezy

The orthostatic hypotension is something you might want to research sooner. It can cause some of his weird feelings. My husband was passing out occasionally from it but not everyone will. It makes him feeljust overall crappy, anxious etc. We finally saw a cardiologist and it was officially diagnosed. First treatment is non pharmacological. He was weaned off his beta blocker for high blood pressure which was something being a PWP should have never been on. Also at initial diagnoses 8 years ago a doctor added citalopram to his levdopa. We are currently weaning him off that now too, also can lower BP. Currently on 5 daily Levdopa with 2 mg divided of ropinirole. We are reducing one med at a time. I see a drop in BP 2 hours after ropinrole but not all the time. Comtan, he passed out so stopped Asap. We’ll see. If we could it would be minimal medication and lots of exercise. He has a terrible lower spine issue though, Look up videos on Rock Steady Boxing, youtube. keep track of his supine hypertension on florinef. His Dr wouldn’t start on it unless absolutely necessary. He said ok to run alittle high with OH. Geez, I know how hard this is. “Life is tough but so are we”.

shirlzoni profile image
shirlzoni in reply to gaezy

Yes we are tough gaezy! Thanks for that info on orthostatic hypotension. Sorry to hear your husband has had such a rough go of it. So dangerous to be passing out like that! My husband has come close to passing out but never has so far. He crouches down on the floor if he feels it coming on. At his neuro exam in June his standing pressure dropped to 60/34 and his dr said he should be dead with pressure like that but that his body must have acclimated to it. But the brain isn't getting enough blood so that is very worrisome.

I suspect the drop in bp stimulates the production of adrenaline which probably contributes to the high afternoon bp and anxiety and other symptoms so it’s something we are working on. Florinef is helping and plenty of salt in his food. But I can’t help wondering if he has an underlying adrenal insufficiency or something like that contributing.

Best of luck to you and your husband and thanks for sharing your insights.

gaezy profile image
gaezy in reply to shirlzoni

Wow, 64/30. Mine passed put 90/40 in neuro’s office. As much as I tried to stay ontop of things for PWP, I didn’t know about the OH or blood pressure issues. Some of The medical community needs to

gaezy profile image
gaezy in reply to gaezy

stay on top of this OH. After this last episode their is a noticeable cognitive decline. Now just my thought since Dementia and PWP is common, can it be the OH that can be managed to some extent before any damage. Dr’s never mentioned OH, I found out fromthe members on this site.

shirlzoni profile image
shirlzoni in reply to gaezy

Yes I have worried about cognitive impairment from the OH as well. So far the florinef is working well. Starting today we are dropping one dose (2 pills) from the Rytary and spacing the other four doses out evenly. Hope to see some improvement in OH as well as other symptoms.

shirlzoni profile image
shirlzoni in reply to gaezy

How awful to see your husband passing out like that. We were horrified when the dr said my husband should be dead with a reading like that. I’m hoping a reduction in his rytary will help with that since levodopa can lower bp. I think it’s also related to his weight loss. It’s like his systems are shutting down but there is no explanation for why this is happening at stage 2 PD.

gaezy profile image
gaezy in reply to shirlzoni

Both his Neuro and now Cardiologist said it’s Neurogenic. May or may not be the meds. Since off beta blocker the lowest we found doing periodic checks has been 105/55. Much better. he does seem ehhh tho. But definitely made worse by most blood pressure meds especially beta blockers. Cardio Dr said a useless med anyone. So need to re evaluate meds Post Parkinson diagnose. Or Dr’s make us aware, I try but not a Dr. Like I said thank goodness for this site. I also read OH can start early in PWP doesn’t matter, Parkinsons the gift that keeps on giving. Cardio guy prefers him a little high. Just his systolic gets high. bottom # always normal, heartrate stays in the 50’s. don’t know why.

shirlzoni profile image
shirlzoni in reply to gaezy

Glad your husband's bp is doing better off the beta blocker. That would be the worst med to be on for someone with OH.

gaezy profile image
gaezy in reply to shirlzoni

Forgot to mention..,I love the conure picture. I had a green cheek for 22 years, passed away 2 years ago.

shirlzoni profile image
shirlzoni in reply to gaezy

Oh so sorry about your green cheek but he lived a good long life. Our sun is almost 20 years old. We’ve had her for 19 years and I can’t imagine being without her.

gaezy profile image
gaezy in reply to shirlzoni

“Pasta” was a female. I know they are wonderful. I know this sounds crazy but I had what I thought the flu Jan 2020, before they were aware about covid. I had my flu shot. It lasted a month. In Feb my Pasta got a cough and died a few weeks later.

shirlzoni profile image
shirlzoni in reply to gaezy

Are you saying it was likely Covid you had and Pasta caught it from you? That’s a horrible thought. Darling name by the way. So sorry to hear what happened to your little girl.

gaezy profile image
gaezy in reply to gaezy

I was so scared when he passed out. I thought he died in front of me. I had no idea. He woke up pretty quick as I was on the phone with 911. He said no ambulance, no hospital, Also these episodes don’t heal right away. It takes a toll on him for a few days.

Our cardiologist said the first med he would put him on if the non pharmacological didn’t help would be the florinef too. I know about the others, he preferred florinef.

I’m still not sure if OH can’t be cured by eliminating the Ropinirole and just staying with the L dopa. Tweak that like others to a lower dose more frequently but don’t over do it.

Everyone PWP different. That can be good and bad🥴

shirlzoni profile image
shirlzoni in reply to gaezy

It might be worth a try to see if the ropinirole is making the OH so bad that your husband is passing out. The Florinef seems to be the least noxious of those types of meds and it agrees with my husband pretty well and he’s really sensitive to meds.

gaezy profile image
gaezy in reply to shirlzoni

Seems my husband is sensitive too. So far he is doing better. But he does run alittle high at times too. I guess the neurogenic stuff. Good the Florinef is safely working, as long as his BP doesn’t get too high sleeping. Supine Hypertension.

shirlzoni profile image
shirlzoni in reply to gaezy

Glad your husband is doing better…that’s good to hear. My husband checks his bp before bed and it’s always normal but I’ll check it tonite after he lies down. Never thought of that with Florinef and no one warned us about it. Thanks…

gaezy profile image
gaezy in reply to shirlzoni

Good to just check.

gaezy profile image
gaezy in reply to shirlzoni

sciencedirect.com/science/a...

shirlzoni profile image
shirlzoni in reply to gaezy

Interesting article thanks gaezy. I tried taking my husband’s bp after he was lying down for a few minutes but the machine was showing a low battery reading and I need to pick up more AAs. But sitting up this morning it worked fine so not sure what’s up with that. Will get batteries and try again today.

gaezy profile image
gaezy in reply to shirlzoni

Yeah, I’m sure he is fine but I would check. I think It would occur more through the night though. I am going to ask to do the 24 hour ambulatory check at next Cardio app’t since he is running alittle high systolic when he gets out of bed in the morning. WHICH if he actually has OH shouldn’t that be low when he gets up in the morning and walks to the BP machine? 🤔🤔

I’m pretty sure it was covid I had 1/2000. I haven’t had the flu in over 20 years since I started yearly flu shots. Exactly 5 days later my husband got it. He actually did better than me with no health issues knock on wood, lol. Then the bird coughing. I was coughing around her I’ m sure. I knew I had something so didn’t handle her as much and no kisses, but she went downhill within 3 weeks. Heartbroken.

“Pasta”
shirlzoni profile image
shirlzoni in reply to gaezy

I didn’t know you could do a 24 hr ambulatory bp check. Let me know how that works out if the dr agrees to it. We may want to try that too.

So sad about Pasta. She was a real cutie pie! Thank heavens you and your husband got through the Covid ok. Sounds like you had a rough time of it and then losing Pasta on top of it…so sorry. I had it in Mar 2020 and was sick for weeks. The coughing was nonstop so I’m amazed that my husband and our sun didn’t catch it.

gaezy profile image
gaezy in reply to shirlzoni

Cough almost made me fall down to my knees. I just kept on going out to stores etc not knowing and probably spreading it. I didn’t know🥴Glad you did good too. I haven’t taken my mask off indoors yet.

ABPM can help in the diagnosis and treatment of some forms of dysautonomia, an autonomic nervous system disorder that can lead to intermittent and unpredictable episodes of very low blood pressure.

verywellhealth.com/ambulato...

shirlzoni profile image
shirlzoni in reply to gaezy

Very interesting link…thanks!

I’m still masking indoors too cause I don’t want to bring anything home to my husband. I don’t know how he escaped it last time but he’s in worse condition now so I worry about how he would handle it.

gaezy profile image
gaezy in reply to shirlzoni

I think a variant specific vaccine for current strain coming up. I agree with Beehive, way too many drugs. I try to be compliant with Dr’s but sometimes🤔. .And many of the drugs they prescribed for him can cause low blood pressure. I tell my husband this was just a little crisis to be expected with this disease. You are in the know now and he is lucky to have you.

shirlzoni profile image
shirlzoni in reply to gaezy

Thank you gaezy! I’m doing my best as we all are and I feel lucky to have a support group now. 😀

gaezy profile image
gaezy in reply to shirlzoni

😉I just posted again. His BP too high when he wakes up to see if anyone has any ideas. Never ends, the worry. We’ll get through it.

House2 profile image
House2 in reply to gaezy

I just started this... These data suggest that orthostatic hypotension with or without other signs of multiple-system atrophy could improve with oral coenzyme Q10 administration.

gaezy profile image
gaezy in reply to House2

I read that too, but also read that it can cause low blood pressure. Maybe it balances. I am going to trial ubiquonal 100mgs soon after he weans off the citralopram. Weaning of the beta blocker was alittle scary. Thanks!

shirlzoni profile image
shirlzoni in reply to House2

Great info...thanks House2! I'll try that if the OH doesn't improve upon lowering of rytary.

gaezy profile image
gaezy in reply to House2

Let me know if it helps you.

Crescendo profile image
Crescendo

I feel terribly about the problems your husband is having. My husband had a similar experience in 2019-2020. He is now 74 and was diagnosed with Parkinson’s 12 years ago. After he had DBS surgery in 2019, his Parkinson’s got worse as a result of over medication. At that time, I posted his condition on many forums, including Health Unlocked, but no one had had a similar experience. My husband’s Neurologist tried to adjust his meds, but he kept having terrible muscle cramps in his thighs and toe curling throughout the day. Like your husband, they got worse as the day progressed. They increased his Sinemet dosage and later added Rytary. His pain was so unbearable and he could not function. He ended up in the hospital. A new neurologist drastically reduced his medication and he improved. He then went to rehab, where he had to learn how to walk again. In rehab, he also had orthostatic hypotension. With the help of a new neurologist and my own research and daily journals, we figured out that his pain was due to over medication of Sinemet. After he stopped the medication, the pain went away. It must be done gradually.Now, 2 years post DBS surgery, he continues to do very well and is pain free. I would recommend looking into DBS surgery. If your husband is a good candidate, perhaps it could help him too.

shirlzoni profile image
shirlzoni in reply to Crescendo

Thank you so much for sharing your husband’s experience Crescendo! I’m so glad you found a neuro who was able to help, and with your research and persistence your husband was able to reduce meds and get the full benefit of the DBS surgery. It must have been disheartening to see him worsen after surgery but thank heavens you were able to get things sorted out and now he is comfortable. This is very helpful to us because it’s further evidence that over medication can cause worsening of PD symptoms. We’e hoping my husband won’t need the surgery but if he does at some point we are now armed with the knowledge that meds may subsequently need to be adjusted downward. Many thanks and best to you and your husband.

gaezy profile image
gaezy

That sounds like good news. My husband is 72, 8 years in. Parkinsons started after a TIA he had in 1 1/2 years prior. Carotid artery blockage. Endarectomy within 2 weeks. I wondered why he didn’t seem to completely recover as he should.

shirlzoni profile image
shirlzoni in reply to gaezy

Oh my I didn’t know PD could be triggered by a cardiovascular event. But I guess it makes sense if that part of the brain gets damaged or maybe just from the shock and stress of it. Sorry to hear that gaezy but it sounds like you’re doing a great job of managing your husband’s health and quality of life which is so important and often overlooked by the medical community.

gaezy profile image
gaezy

Well, just my thoughts, Vascular episode. I mean the stroke could have damaged the substansa nigra part of the brain? Spelling🥴 Neuro doesn’t agree.

shirlzoni profile image
shirlzoni in reply to gaezy

It sounds like a reasonable assumption. I've read that traumatic brain injury can trigger PD so why not other forms of brain injury. My husband's initial MRI did show a prior brain injury but it was most likely from a childhood accident he had on the playground at school so not likely to be related to the PD.

gaezy profile image
gaezy in reply to shirlzoni

And he also played a-lot of football. Also a 22 year Army Vet. But I would say growing up in a poor environment.

shirlzoni profile image
shirlzoni in reply to gaezy

That’s a lot of risk factors right there. My husband was a chemist and we think he got it from chemical exposure.

gaezy profile image
gaezy in reply to shirlzoni

I believe that. I met a woman who thought her Parkinsons came from being a histologist in a lab. The formaldehyde exposure daily. Poverty… lead paint, asbestos, bug spray, cigarette smoke you name it. Then again the tia, could be cumulative.

shirlzoni profile image
shirlzoni in reply to gaezy

And to think I worked as a lab tech for 2 years. Your poor husband had so many toxic exposures. The TIA might have been the last straw.

rebtar profile image
rebtar

CDP Choline or Citicoline (same thing). Dr. Laurie Mischley (naturopath in Seattle, specializes in PD) recommends the following dosage to be able to lower c/l meds by 30-50%. 1000mg per day, either 500am and 500 pm, or 250 with each dose of c/l.

She works exclusively with PD patients and this has helped many.

pubmed.ncbi.nlm.nih.gov/332...

I’m trying 500mg am and 250mg pm, because I have trouble sleeping and Citicoline can be stimulating for some people. I’ll consider 1000mg if this isn’t helpful.

It can take 3-4 weeks to start working, so around that timeframe you may see more signs of over medication (dyskinesia, dystonia) and need to reduce c/l meds.

However, in your husbands case, reducing his Rytary frequency , and perhaps other meds, first to see if that helps, sounds like it makes more sense. If you can get him stabilized on PD meds that work for him, you could then try this if you think it could help.

You can find out more about Dr Mischley online, she has an online PD school with a lot of good information. There’s quite a long wait to be a new patient.

Definitely sounds like you need a new MDS.

shirlzoni profile image
shirlzoni in reply to rebtar

Many thanks rebtar for such an informative post! The Citicoline sounds very promising and I will make a note of it as something to try once we have my husband stable on his meds. It would be wonderful if nutraceuticals could be used to minimize the use of drugs. I have heard of Dr. Mischley and will look further into her educational materials as well. She sounds like a gem! Good luck with the Citicoline..I hope it works well for you! I appreciate your feedback and the great resources.

rebtar profile image
rebtar

You’re so very welcome and I wish you and your husband success with your current challenges.

DEAT profile image
DEAT

We are all so grateful to have Neurologists MDS etc to treat our Parkinson's Disease.

However.......... It is so frustrating for PWP and carers to read here of same professionals minimising our bad experiences, failing to listen to us, dismissing our signs /symptoms,

coercing patient it's their way or the highway, and even at times denying our discomfort due to their lack of personal knowledge or experience.

We have come a long way in the management of PD.

But reading all the above replies how little we really know .

I wish you all the best.

shirlzoni profile image
shirlzoni in reply to DEAT

Thank you DEAT for your heartfelt reply and well wishes. The outpouring of support I have received here has been such a blessing. I don’t feel alone on this journey anymore. Best to you, too.

Despe profile image
Despe

Shirlzoni,

My husband's MDS at Vanderbilt told us during his initial visit that "Less (medication) is more." He was diagnosed in 2016 by our family doctor and started him on 3 t Sinemet a day. At that time, we didn't pay much attention to PD and at times, hubby would forget to take his medication. Didn't have any profound symptoms other than a minor resting tremor on his right hand. In 2018, we decided to get a confirmed diagnosis. We went to Mayo in Jacksonville and got the confirmation. Since then he still uses 2-3 t of Sinemet but he combines it with Mucuna Pruriens (MP) which his Vanderbilt MDS had recommended. This MDS is amazing as he knows all about natural levedopa and made the recommendation about adding it to 1/2 t of Sinemet. He is no longer my husband's MDS as he joined the research team at Vanderbilt. The new one my husband has is just as good, guess we have been lucky in that respect.

Unfortunately, early last month he fell while walking using his trekking poles. Fall was not the result of losing balance but of not lifting his feet high enough to go from the road on to the sidewalk. He fell on his face and fractured his vertebra high at the base of his neck. Long story short, after the fall and 2 days after his release from the hospital, I had to call Emergency as his feet up to his stomach were extremely swollen. He also became immobile due to UTI which no doctor had diagnosed. He developed aspiration pneumonia and he failed all his swallowing tests at the hospital. Doctors recommended feeding tube for 4-6 weeks until fracture is healed. At that time, we will have the feeding tube removed. He is now at a rehab facility for rehabilitation. Even now he only takes 3 t Sinemet a day. I can't ask for MP as if any sup or med is not on their pharmacy list, he can't have. :( Living the worst nightmare!

shirlzoni profile image
shirlzoni in reply to Despe

Oh my gosh Despe I’m so sorry to hear about your husband’s fall and subsequent complications. How horrible that this happened when he was doing so well on minimal medication. I hope he recovers well and can rehab back to good health!

I know all too well how stressful it is to see someone you love going through such a nightmare. My husband fell back in 2014 and broke his kneecap into three pieces. After the surgery it was a long road back for him and so hard to see him in so much pain. My biggest fear is of him falling.

Thanks for sharing what your great MDS said about less is more with the PD meds. Just my thinking too. I’m amazed that you would find two drs at Vanderbilt who use mucuna along with sinemet. It’s encouraging to hear that not all MDS drs are closed to alternative or complementary medicine.

I wish you and your husband all the best. Take care.

Despe profile image
Despe

Shirlzoni,

Thanks for your kind words. Anyone falling and breaks bones is in pain, but PWP are even in more pain and vulnerable to more problems.

He is in a horrible rehab facility right now and my son and I have been trying to move him to a facility of his choice. The current rehab center did file the transfer request with the rehab facility of our choice. However, for the last 3 days, I have been trying to find out details, but no one answers my phone calls, or my messages. Diversicare of Big Springs is the name of this horrible substandard facility. The staff there, rude, offensive, and untrained gave my husband's morning meds at 11:00 am and later his feeding. On top of that his physical, speech, and occupational therapy is minimal, every other day for about 20 minutes or less.

I am looking for alternatives, and the best one I have is to move him back home. Of course, I have to hire the right people and it's expensive, but I don't have many choices.

How is your husband doing?

shirlzoni profile image
shirlzoni in reply to Despe

Hi Despe, so terribly sorry to hear that your husband is in such an awful facility. That would make a wreck out of me if I were in your shoes. I hope you’re able to get him out of there soon. The healthcare system is so broken. Places like that shouldn’t even be in business.

My husband is still feeling horrible. We thought we saw a glimmer of improvement after dropping one of his doses but his bp shot up last night and we almost ended up in the ER. Realized that we didn’t drop down the Florinef when we reduced rytary so it was too much for him. He dropped it down today by one pill but is still having elevated blood pressure, shortness of breath, and rigidity. I’m beginning to wonder if what he really needs is more levodopa not less. But his MDS insists his symptoms are psychological which is such BS. Calling another PD clinic outside our insurance to see if we can get in for a second opinion because we only have a couple of MDS at our current place and the other one is not taking new patients. So I hear you about the cost of paying for decent care but what else can we do.

Despe profile image
Despe

So sorry about everything that's happening to our spouses. My husband has not experienced any high blood pressure, always between 118-125/72. He was taking plenty of supplements but not sure why his BP stayed good, even today. He did experience high BP when he was diagnosed with arrhythmia, but he was treated in Belgium having cardiac ablation. That was a life saver.

What is Florinef and why is he taking it? Have you considered adding natural levodopa to his meds? I am sorry if I missed something, but did he try Sinemet?

shirlzoni profile image
shirlzoni

We have two friends who had the cardiac ablation and are doing well since. So glad your husband was able to have that procedure to stabilize his heart rhythm.

The florinef is an adrenal hormone that helps you hold onto water. Great for the morning when the pressure is low but not so great for afternoon and evening when his bp tends to go up. But when you take it in the morning the effect lasts all day. The MDS doesn’t worry about bp of 150s/100 he had last night as long as it only lasted a few hours. But my husband’s gums started bleeding and he doesn’t have gum disease so we felt it was from the high bp and that was scary.

He used sinemet in the past but was switched to rytary when frequent wearing off became a major issue. I wish he had never taken rytary though. We sometimes use sinemet as a rescue or bridge dose when the rytary fails to go in on time. Tried a supplement prior to going on meds called Dopatone that has mucuna in it and even at maximum dose it wasn’t enough to get relief so we relented and he started sinemet. Does the mucuna that your husband was using have a fairly consistent dose of levodopa in it? What brand do you get him? It might be something for us to revisit at some point.

ddmagee1 profile image
ddmagee1

I’ m so sorry to hear about this!! You both have been going through a nightmare! Since I have PD, and have had to deal with most of the symptoms, your husband has had, I sure can relate to the frustration. I seem to have some apathetic responses, from my neurologist, concerning my treatment, and well-being, too! As a patient, who needs support, and help, from my Doctor, I get very upset when I feel that, perhaps, he doesn’t care that much. I am on Sinemet, and it does help me a lot, with my symptoms, actually. I am not being overdosed - that is one thing my Doctor is doing ok with. I have read of others, in this forum, who have had problems, of Rytary not helping that much, etc. Since I have no experience with Rytary, and am not a trained medical person, my advice to you, would be, to check with a neurologist, and/or movement disorders specialist, and express your concerns about Rytary, and your husband’s losing weight, and, seemingly, his health! If you are not pleased with your current Doctor, and his response, if you can, perhaps, checking out another Doctor, would be advisable. Importantly, don’t give up! Keep on seeking the right treatment, and medical care, for your husband, who, I can see, really needs a compassionate, caring, medical care professional’s attention, to help him feel, and, perhaps, get better, in order to daily cope, with living with PD! Good luck to you both! 😊

shirlzoni profile image
shirlzoni in reply to ddmagee1

Hello ddmagee1 and thank you for such a kind and understanding reply to my post. I can see that you are all too familiar with the frustrations of having a seemingly uncaring doctor. I’m glad to see that you’re not being overmedicated though. Sounds like your doctor is careful in that regard. We are exploring options at this point in case we need to seek care elsewhere but I hope it doesn’t come down to that. Such a rollercoaster ride with this condition but we won’t give up until we get it all sorted out and my husband is feeling better. Thanks for the encouragement and best wishes to you, too!

wifeofparky profile image
wifeofparky

I know it is a lot of work but get a notebook and everyday record the time he takes his meds and any symptoms/side effects that occur and the time they occur.If she sees a pattern from your documentation it will be more precise that just listing a bunch of symptoms that you notice with no context. Writing it down is important because all too often we forget exactly when they happen or the timing in relation to the time of dosing.

I wish you luck and if she still won't listen take your notes to a new MDS and hopefully you will get answers and results. God Bless you both.

shirlzoni profile image
shirlzoni in reply to wifeofparky

Bless you, wifeofparky, for taking the time to share such a great idea. We’ve been keeping a log of what meds my husband takes and when but not the symptoms he’s having. Yes that will help us to see patterns and correlate symptoms to the timing of the meds. Sometimes when you’re overwhelmed logic goes out the window. Thanks for helping us to retrieve it! Best to you and your husband.

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