Can I come back?: Basically, what happened... - Cure Parkinson's

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Can I come back?

MBAnderson profile image

Basically, what happened is I was taken to the VA by ambulance 2 days before my dark post and at the time I wrote it I thought I was dying. I even told my youngest daughter I was dying which was pretty bad. I was discharged from the hospital the next day and the following day was again taken to the VA hospital and again thought I was dying. My wife thought the same. We even modified our will and updated our end of life instructions.

Well, here I am, living in FL with my oldest daughter because she has a single story house while my wife sells our 3 story townhouse and buys a single story town house.

For reasons unbeknownest to me, I cannot go up or down stairs. Among other things, my legs stopped working and I am learning to walk again, but making great progress. I walked up and down the street today unassisted, which my daughter didn't appreciate -- as much as I do.

I am happy and life things are good.

Marc

123 Replies

Omg i have been so busy and not in the forum loop....!

Marc! I appreciate your original goodbye note, and appreciate this one even more... Glad you are back on your feet ✨✨✨✨💖

pdkid profile image
pdkid in reply to pdkid

And still with us!!

So glad you are back. It’s great that you are moving closer to your daughter. Nothing like family around you to help you get back on your feet. Shalom . Stay safe and keep well.

Marc,

So happy to read your posts again!

What exactly happened, what were your symptoms (besides your lower back extreme pain) that contributed to your temporary demise? Did you call Dr. J? In any event, I never believed that you were going to die. Some times fear is our worst enemy.

Again, WELCOME BACK! From the bottom of my heart, I wish you all the best and a speedy recovery. You are on the road to recovery anyway, walking up and down the street unassisted.

Marc, very sorry to hear that you've been through so much. It sounds like you went through hell but managed to fight your way back as we all hoped and prayed for. Any idea what might've caused the event? In any case, so elated to hear that you're walking again.

It's a matter of time for full recovery now! 👍

MBAnderson profile image
MBAnderson in reply to rescuema

My wife thinks the whole thing may have been triggered by the drug flexeril/cyclobenzaprine, otherwise we have no idea.

rescuema profile image
rescuema in reply to MBAnderson

Possible- especially if you’ve taken the below including any natural MAO inhibitors (including turmeric). Your recovery should be swift in that case. 🙏

So relieved that you’re OK!

“Do not use Flexeril if you have taken an MAO inhibitor in the past 14 days. A dangerous drug interaction could occur. MAO inhibitors include isocarboxazid, linezolid, phenelzine, rasagiline, selegiline, and tranylcypromine.

Some medicines can interact with cyclobenzaprine and cause a serious condition called serotonin syndrome. Be sure your doctor knows if you also take stimulant medicine, opioid medicine, herbal products, or medicine for depression, mental illness, Parkinson's disease, migraine headaches, serious infections, or prevention of nausea and vomiting. Ask your doctor before making any changes in how or when you take your medications.”

mayoclinic.org/diseases-con...

MBAnderson profile image
MBAnderson in reply to rescuema

rescuema,

Thanks, I had no idea. My doctor didn't know I was taking tumeric. My doctor, who has only seen me twice, a year apart both times, probably didn't even realize I have PD. He prescribed it over the phone. First time I've ever taken a pharmaceutical without researching it first and wouldn't you know?

Marc

rescuema profile image
rescuema in reply to MBAnderson

Add your EGCG to the MAOIs list.

"EGCG, apart from enhancing the conversion of dopamine, is also involved in the inhibition of MAO-B"

ncbi.nlm.nih.gov/pmc/articl...

more MAOIs

botanical-online.com/en/med...

MBAnderson profile image
MBAnderson in reply to rescuema

Good grief. I am a daily user of EGCG. I didn't stand a chance. Good article.

rescuema profile image
rescuema in reply to MBAnderson

Just really glad to have you back! You'll hopefully get better in a matter of weeks.

sharoncrayn profile image
sharoncrayn in reply to rescuema

I don't believe flexeril is MBA's real issue because no educated physician, even the crummy ones at the VA, would out of the blue prescribe it. He or his dear wife had to ask for it for a reason. What was the real reason? Supposedly according to him and his positive posts his Swiss double FUSPTT was a 90% cure all, but his doc out of the blue gave him this drug? I doubt it.

Can we get real for a change? It blocks the nerve impulses to your brain because you are in pain due to your consistent and severe muscle spasms. But it is relatively safe and non-toxic unless you are a hypochondriac on a wide variety of drugs including alcohol. Then anything goes. Anything.

Who knows what he took or did not take that became the critical tipping point into his darkness? you don't know. neither do I.

sharon

it is very commonly used for severe muscle spasm. I think because of how well tolerated it is. However if it is serotonin syndrome you are worried about you need a very high dose of maois and flexeril. It's more likely that you are just one of those people who are in the "rare side effect" category.

I was once in that category about 13 years ago in grad school i became depressed and was prescribed zoloft at a low dose. I was so crazy anxious and depressed and out of my head i didnt have the brains to stop. I took it for a week and had suicidal thoughts ALL week (never ever had suicidal thoughts in my life). It was a scary week but realized i was in the rare side effect category.

The.most common prescribed dose is either 5 mg or 10 mg. For an older person i would think 5 mg is more appropriate. But i think any dose for you would be too much because you are in the rare SE category.

Good call, Ms. Crayola, except cyclobenzaprine was the only change. Plus, I don't drink, but readily admit to being a hypochondriac. I have put my double FUS PTT at 65% -75% effective and, as I said elsewhere in this post, the tremor in my left hand returned with a vengeance, but is fading now and I can stop it.

True enough, my wife suggested it (for crippling back spasms, so I don't blame the doctor (or her.) (I guess this is the problem with a doctor who is responsive the patient.) I am/was taking only sinemet and terazosin, but a handful of herbs - tumeric, EGCG, etc.

So, what do you think now? Looks like I'm a rare SE personage and the question before you juror #6 is; can I come back?

rescuema profile image
rescuema in reply to sharoncrayn

Sharon, Marc was completely immobilized to the point he needed complete assistance for private chores and that prompted his wanting to end his life combined with hallucinations but within days of stopping the drug he felt better and despite the worst expectations and deciding to sell his house for a single story home he is walking again without assistance within a matter of a week. Unless you design a study to disprove the drug interactions between Flexeril plus two MAOIs (turmeric and EGCG) the best guess is serotonin syndrome with a high outlook for quick recovery. Besides, you should know that some people are poor/over metabolizers of pharmaceuticals with serious reactions especially with enzyme deficiencies.

"Besides, you should know that some people are poor/over metabolizers of pharmaceuticals with serious reactions especially with enzyme deficiencies."

Or genetic predisposition. I need less than an adult dose for most things (and intolerant of many things), same for my mother, same for her mother. My daughter had genetic testing (a test specific to pharmaceuticals) done and the trait shows up in her test.

The enzyme deficiencies tend to be genetic polymorphisms indeed. I can’t take narcotics with deficient CYP2D6 allele for example.

Oh! I didn't realize that. Thank you.

sharoncrayn profile image
sharoncrayn in reply to rescuema

Thanks doc. tell me something if you have some time....

what was your initial clinical diagnosis at the time of his admission? what blood work did you call for? what did it show? were his plasma levels for flexeril exceedingly high indicating multiple dosing per day for at least 3-5 days? Did you pull all of his previous VA medical history? what conclusions did you reach from that review?

flexeril should have cleared his system completely in at most 3-4 days. during that time, did you consult with his prescribing physician as to why he prescribed flexeril? what else did this physician tell you he has prescribed for this patient? when did the patient begin taking his flexeril? how many days ago? what was the dose?

did he use more than 60 mgs. of flexeril in a 24 hour period at any time prior to admission essentially "overdosing" himself? If so, why did he exceed 30 mgs.? did his physician approve/recommend it? if so, why?

did you do a search of this patient's VA drug prescription history to see if he "shopped for doctors" which is typical and was previously using flexeril or another antispasmatic with several other drugs ? what did you find? did you find a clear contraindication among the drugs he was taking? if so, did you contact your hospitals resident pharmacologist to find out why? what was their explanation?

If we can get real for a second or two, flexeril is just the tip of a long developing iceberg, which ultimately he hit broadside .

(by the way, the bioavailability of tumeric and ECGC is very low. they don't become drugs except in very, very high doses. therefore your thesis of their impact on this patient's near death experience seems rather over drawn, if not without any substantial basis...clinical or otherwise unless this patient confided in you that he took both herbs in massive amounts every day).

sharon

rescuema profile image
rescuema in reply to sharoncrayn

Sharon, don't be so myopic or it'll stall you from what's called being able to connect the dots. There are ways to improve the bioavailability of turmeric/curcumin to the point I sweat out yellow stains and personally I can easily overdose on green teas if I take more than a few cups a day not to mention EGCG is well known to cause liver toxicity/failures - I recommend you look it up.

Are you seriously ignoring the known major contraindications stated for Flexeril/cyclobenzaprine? It says specifically not to combine with MAOIs including herbal products to avoid serious interactions. The bottom line is it is a definite possibility while no one knows for sure what happened.

sharoncrayn profile image
sharoncrayn in reply to rescuema

Oh, I see. You know for a fact that MBA was utilizing methods to increase the bio-availability to the point that the supplements were becoming a pharmaceutical.

what exactly were those methods he used?

rescuema profile image
rescuema in reply to sharoncrayn

Taking turmeric with fat along with black pepper (piperine) will significantly increase bioavailability - basically with seasoned food. Studies have shown that combining the piperine in black pepper with the curcumin in turmeric enhances curcumin absorption by up to 2,000%

Marc had stated he drinks lots of green teas and uses black pepper with his turmeric on/off.

You can also take bioavailable supplements such as Theracumin or Life Extension's Super Bio-Curcumin Turmeric and everything you touch regularly will stain yellow in a matter of a week by taking just 1 pill a day, but that's beside the point. Try it.

sharoncrayn profile image
sharoncrayn in reply to rescuema

You nor anyone else here has a clue about why this situation happened that brought him to the brink. Neither do I, but at least I admit it. Regardless, if MBA doesn't make some major changes in what he is doing, it is highly likely he will go to the brink again, but he may not be so lucky the next time.

I feel very sorry for him, and for anyone else in a similar situation.

rescuema profile image
rescuema in reply to sharoncrayn

Oh don’t pout dear Sharon. You know your questions tend to be rather rhetorical in most cases. 😉

Edit- since you’ve completely changed your earlier reply my response doesn’t make any sense now. Btw I’ve stated repeatedly this is a possibility and no one knows what happened for sure. Anyhow no point in continuing this discussion.

sharoncrayn profile image
sharoncrayn in reply to rescuema

Yes. I already know you don't know. But I ask the rhetorical questions anyway to make the point you don't know, which is why you never answer them directly.

rescuema profile image
rescuema in reply to sharoncrayn

😀

simonasays profile image
simonasays in reply to rescuema

Again, I am really doubting the serotonin syndrome because those supplements and MAOIs in general need to be at higher dosage for a serotonin storm situation. On top of that, hallucinations are not listed as serotonin syndrome symptom. Plenty of my patients take migraine medications, mood stabilizers, antiepileptics, antidepressants and use flexeril temporarily no problem.

rescuema profile image
rescuema in reply to simonasays

"On top of that, hallucinations are not listed as serotonin syndrome symptom."

Symptoms of serotonin syndrome may include: ...Hallucinations (seeing or hearing things that are not there).

uofmhealth.org/health-libra...

A triad of clinical features characterize SS: 1) cognitive or mental-status changes (e.g., agitation, confusion, delirium, hallucinations, hyperactivity, hypervigilance, hypomania, pressured speech); 2) neuromuscular abnormalities (clonus [spontaneous, inducible, or ocular], hyperreflexia, increased muscle tone and spasms, restlessness, rhabdomyolysis, rigidity, shivering, tremor); and 3) autonomic hyperactivity symptoms (diaphoresis, diarrhea, fever, flushing, hypotension or hypertension, increased bowel sounds, mydriasis, increased respiratory rate, tachycardia, tearing).

uspharmacist.com/article/dr...

simonasays profile image
simonasays in reply to rescuema

Fair enough - mental status changes I suppose is a broad enough term that some might include hallucinations. but really we can cut and paste various sources but who knows where they cut and pasted from. It is not listed in as a specific symptom in the NEJM review about serotonin syndrome.

You aren't addressing that serotonin syndrome is usually dose dependent. Turmeric and ECGC are just not going to be the sole cause of a serotonin storm. Im not trying to "win" any argument. i would hate for someone on this site to discontinue it's use or the use of any other supplement or drug based on the assumption that a dose of flexeril and the supplements are dangerous. Benzodiazepines are actually sometimes given to people who are suspected to have serotonin syndrome because muscle rigidity and clonus is a common feature of SS. Seems consensus hasn't been reached on SS in the medical community either.

rescuema profile image
rescuema in reply to simonasays

" Turmeric and ECGC are just not going to be the sole cause of a serotonin storm."

Of course not, but it would be prudent to be very cautious given the serious warning stated for combining MAOIs with cyclobenzaprine, two untested MAOI compounds affecting the liver no less while the absolute mechanism of actions of cyclobenzaprine is unknown.

Turmeric -

"Some medications are changed and broken down by the liver. Turmeric might decrease how quickly the liver breaks down some medications. Taking turmeric along with some medications that are broken down by the liver can increase the effects and side effects of some medications. Before taking turmeric talk to your healthcare provider if you take any medications that are changed by the liver

Some medications that are changed by the liver include clozapine (Clozaril), cyclobenzaprine (Flexeril), fluvoxamine (Luvox), haloperidol (Haldol), imipramine (Tofranil), mexiletine (Mexitil), olanzapine (Zyprexa), pentazocine (Talwin), propranolol (Inderal), tacrine (Cognex), zileuton (Zyflo), zolmitriptan (Zomig), and others."

rxlist.com/turmeric/supplem...

I hope The Lancet will do -

"muscle twitching and spasms, changes in mental state, hallucinations, sweating, and fever lasting for several weeks—suggest serotonergic overstimulation of the CNS (ie, the serotonin syndrome)."

thelancet.com/journals/lane...

FDA drug label -

"CONTRAINDICATIONS

Hypersensitivity to any component of this product. Concomitant use of monoamine oxidase (MAO) inhibitors or within 14 days after their discontinuation. Hyperpyretic crisis seizures, and deaths have occurred in patients receiving cyclobenzaprine (or structurally similar tricyclic antidepressants) concomitantly with MAO inhibitor drugs.

WARNINGS

Serotonin Syndrome

The development of a potentially life-threatening serotonin syndrome has been reported with FLEXERIL when used in combination with other drugs, such as selective serotonin reuptake inhibitors (SSRIs), serotonin norepinephrine reuptake inhibitors (SNRIs), tricyclic antidepressants (TCAs), tramadol, bupropion, meperidine, verapamil, or MAO inhibitors. The concomitant use of FLEXERIL with MAO inhibitors is contraindicated (see CONTRAINDICATIONS). Serotonin syndrome symptoms may include mental status changes (e.g., confusion, agitation, hallucinations), autonomic instability (e.g., diaphoresis, tachycardia, labile blood pressure, hyperthermia), neuromuscular abnormalities (e.g., tremor, ataxia, hyperreflexia, clonus, muscle rigidity), and/or gastrointestinal symptoms (e.g., nausea, vomiting, diarrhea).

accessdata.fda.gov/drugsatf...

Sharon your lack of compassion and harshness astonished me!

trix,

if you bothered to read my posts my point was very simple: the spasms effecting his CNS did not happen because of flexeril. therefore, it is important fir him to deal with this issue first with his physician rather than blame flexeril which was administered subsequently.

As I said previously, I feel very sorry for him, but compassion isn't going to save his life, which is the name of the game where I come from.

So Sharon what did you suggest to save Marc’s life exactly?

Trix,

read my next post to MBA.(below)

I have no idea because MBA has provided so little information about several aspects of his situation. even if he did provide a full medical record, it would be just a guess. over the years he has tried so many things, who can figure out what might help? certainly using any antispasmodics in future is apparently a no-no.

so first up, he has to find out why the spasms occured. they don't occur for no reason.

A special form of muscle spasms is the dystonias (i.e. parkinsons) where an abnormality perhaps exists with the chemicals that help transmit signals within the brain. Examples include torticollis and blepharospasm. Treatment might include medications to help restore the neurotransmitter levels to normal which is always problematic with long term PwP (which MBA is).

so he has to find a doc who knows if it is or isn't. I'm not that doc.

Ms. Crayola,

I went back and double checked the chronology. It was as follows; We got the Flexeril on August 20 and I assume I began taking it that day. I was admitted to the VA hospital on the 25th and was discharged the 27th, so I took the drug for 5 days before I froze up and as you asked in a way that made the reasons suspect, my wife recommended the drug for muscle spasms in my back and my doctor at the VA prescribed in response to our request.

" The spasms effecting his CNS did not happen because of flexeril and therefore it is important fir him to deal with this issue first with his physician rather than blame flexeril which was administered subsequently."

So, I did not take the drug subsequent to my becoming immobilized and my admission to the hospital as you said to Rebekah and the reason for the prescription was straightforward.

I have reread comments in this thread and could not find where or what you suggested that would save my life, but as you can imagine, I would like to know what that is and why you are suspicious of the reasons for the prescription?

Marc

I may be on hallucinogenic Rose wine here on holiday in the Landes, because I find myself concerned that in the enthusiasm to slap down the abrasive ms crayola, there has been a failure to rtfq.

I can't find where Sharon says this

"So, I did not take the drug subsequent to my becoming immobilized and my admission to the hospital as you said to Rebekah"

What she says is the spasms didn't start with the drug and you should get the cause of the spasms investigated first and not blame the drug for them. Given you were prescribed the drug to relieve the spasms, that seems pretty solid

Slightly less obvious, but still reasonable to consider, it is unlikely that the drug made the back pain and rigidity worse

It might have contributed to the hallucinations and mental state. But like my dad that could have been old age and physical weakness

I have to admit, though I pushed you for a reaction about suicide I wasn't clear that's what you meant. I thought you thought the end was nigh. Not that you were threatening to implement it

marc/mba,

#1 I thought you said you were admitted two (2x) times to your VA hospital because of your problem and ultimately your near death experience (never explained to us what they did to save you). now you say it was only once for 2 days. which is it? huge difference since 2 separate admissions tells me this situation was ongoing. even the VA doesn't do "back-to back"inpatient admissions without a pretty good reason.

#2 Any dose of flexeril near or above 50-60 milligrams/day with your undefined drug/supplement cocktail is going to present problems. "near death" (or whatever) out of the blue? very doubtful unless you overdosed and exaggerated your situation which certainly is possible. Spasms requiring a prescription don't occur without a reason.

#3 so you asked for and took flexeril for no apparent reason other than some minor muscle spasms? AND THIS RATHER BENIGN ANTI SPASMODIC "FROZE" YOU UP even though it is a antispasmodic? Flexeril has been in use since 1977. critical manifestations are rare unless over dosed.

Unfortunately, it is both an antidepressant and antispasmodic which means it probably does effect your brainstem. Regardless of its long half life, its efficacy is usually around 4 hours which can easily lead to overdosing especially for anyone with a compromised liver or alcoholics. so you know for a fact you are not an alcoholic and you never overdosed because you tracked each dose?

And your poor dear wife (RN) and your compassionate VA doc (MD) never ran a check with flexeril against all the stuff in your drug/supplement cocktail? I suspect they didn't because no one really knew what you were on. As a bonafide VA hypoC who would know?

And now you are well off flexeril, but you moved to Florida for care by your daughter, and still can't walk up and down stairs. Something else is going on besides the flexeril. It is long gone from your system.

#4 As usual over the years in discussing things with you, if you understood what I wrote, it would really help. Unlike some others on this forum, I said I DON'T KNOW or claim to know what your underlying problem is. But whatever it is, it cannot be blamed soley and exclusively on the very, very short term use of the old drug flexeril. logically it doesn't make any sense since you claim your bilateral PTTFUS reversed all your PD symptoms approximately 70%. therefore, muscle spasms due to faulty neuron signalling to your muscles shouldn't occur unless the PTTFUS somehow disturbed them or ultimately misdirected the signals in some unknown manner.

Furthermore, (to repeat myself) I would find out the root cause if I were you. Assuming your spasms are not an unique one time experience, any antispasmodic will likely do the same in the future. perhaps you can do something to prevent a recurrence of your spasms. As i said before in a previous post, I have no clue what that might be, but if i were you, i would try my best to find out.

__________________________________________________________________

"so first up, he needs to ind out why the spasms occur. they don't occur for no reason.

A special form of muscle spasms is the dystonias (i.e. parkinsons) where an abnormality perhaps exists with the chemicals that help transmit signals within the brain. Examples include torticollis and blepharospasm. Treatment might include medications to help restore the neurotransmitter levels to normal which is always problematic with long term PwP.

so first he has to find a doc who knows if it is or isn't. I'm not that doc.

sharon

Reading the drug side effects, I think your wife is probably correct.

FWIW, my daughter got much better over the course of a few days after her bout of neuroleptic malignant syndrome (though after 2 years, her blink rate seems high and she has postural tremor when tired).

marnegro profile image
marnegro in reply to MBAnderson

Two years ago I spent a whole week at the hospital. My legs got paralyzed, and the paralysis came couple of times a day, like suffering an attack starting to make me immobile from the toes to the neck and that made me very difficult to breathe. Two weeks before that I had started on flexeril three or four times a day. It was not very clear what happened to me then. It was believed by hospital doctors it was a guilllan-barre syndrome but was not conclusive. I believed it was a reaction caused by flexeril as I found then a warning at the APDA site about flexeril is a NO NO medication for PWP.Hope you get better soon.....

MBAnderson profile image
MBAnderson in reply to marnegro

Thank you marnegro.

You Are Back!!! Whew. How scary that must have been! Welcome 🏠 home, Marc.

What a lot has happened in such a short time. So great to read your update that you are on the mend. Yay!

Yes good to hear your update, and improvement!

🌺🌺🌺

Welcome back Marc!

Very glad you are on the mend! Neuroplasticity to the rescue!

Marc, fortunately you never left.Welcome back to the world of the living.

All the best with your quick (in the biblical sense) recovery.

I am happy that you are better! We missed you so much! welcome back!👍😀Gio

Hi Marc,I haven’t been on HU for a couple of weeks and just saw you original post. So glad you are back.

So glad you're back! We missed you! 😊🙏🥊💖

Come on, Marc, you know this place doesn't function nearly as well without you. I am very glad that you are back and clearly on the mend!!! I missed you bro!😁

Art

Glad to see that you are doing better, Marc. I am so happy for you and your family. These things happen to us as a special community more often than not. I myself went through the stages of being afraid that I was going to die, to rationalization, realization and acceptance and finally recognizing that I was going nowhere 😊. My MDS called it severe psychosis and treated me with Klonopin, Paxil and Seroquel. I laugh at it when I think about it now except that I soon realize that I had put my family through immense pain and suffering for a brief period of time.

I can understand if your closest family and friends who stood by you for the duration have some concerns. (mine did for a while). However, here it is different. We are all in the same metaphorical boat and we are on the same journey essentially. So I am saying that there is no right or wrong and there is no need to question the validity and sanity of your "membership" in this community. We need to give ourselves permission to freak out at times, do crazy stuff once in a while and refuse to surrender to Parkinson's. After all the condition is named after a man. It is ultimately not match to the power of faith in our own ability to survive.

God bless you and your family.

RKM

MBAnderson profile image
MBAnderson in reply to pdpatient

RKM,

Thank you.

I am sorry to learn about your experience, but they sound alike. I know there is one other gentleman on the forum who describes a similar experience to ours.

I even broomed the doctors and nurses out of my room so I could die in peace. Ha, so I've yet to find out what exactly what happened.

I just learned from my daughter that my visits to the VA were 1 week apart, not 2 days as I thought last night. Well, I'll piece it together, so the only thing I know now is that my body locked up and I had some kind of neurological thing going on.

My wife thinks the whole thing may have been triggered by the drug flexeril/cyclobenzaprine - which moves me yet another notch away from all but essential pharmaceuticals and she has a medical background.

Marc

JAS9 profile image
JAS9 in reply to MBAnderson

It's good to see you here again, Marc. I'm not the "one other gentleman on the forum who describes a similar experience", because I've never shared this, but now I will. It started just last week, so the timing is kind of difficult to fathom. It actually makes me wonder if this is happening to a lot more people than we hear about.

So, it was a Tuesday and I remember waking up feeling as though I had a bad cold. My wife and I have both been vaccinated, but the uncertainty at the time was how common "breakthrough infections" were. My temperature and blood-oxygen were normal, and the last thing I remember before coming out of my fog at the hospital was taking my supplements and my first pill of the day (I take Rytary) .

The very first thing I remember at the hospital ER was someone sticking those long sticks up my nose. At some point, they took x-rays of my chest. At some later time, they released me and my wife picked me up. I do remember a lot of details of our trip home. The memories of the hospital are all vague and more like memories of a dream. My wife began to fill me in on what had actually happened, beginning that morning. She says that I had been convinced that I had Covid-19 and might be dying. She had her doubts but called our health provider and they recommended bringing me in just to be sure. She could tell that I wasn't my normal self, and didn't know what else could be going on, so she drove me to the ER.

They wouldn't let her come with me. From the time she dropped me off until she picked me up was 5 hours (it still feels like it was less than an hour to me). Anyway, I went to sleep that night but slept very poorly. My Rytary wasn't as effective as usual and seemed to be wearing off in 3 hours instead of my normal 4. The muscles on either side of my back were very painful (also not normal for me). Also, I felt very susceptible to tripping and falling (also not my norm).

The next morning I had a message from my doctor asking what had happened. I explained what I could, and she immediately went over my supplements with me. Rytary is the only prescribed medicine I take, and I don't usually take any exotic supplements, but I had just started taking a new supplement. The recommended dose is 2 capsules, which contain:

Tumeric (curcuma longa root)....1000 mg

Ginger extract (root)......200 mg

Tumeric (root, std to 95% curcuminoids)...100 mg

BioPerin (Black Pepper Extract, fruit Piper Nigrum)...10 mg

This, along with my usual, more normal supplements, is what I took just before my strange behavior and memory loss. Fortunately, something told me not to take any of my supplements the next morning before my doctor called, or my experience might've repeated itself.

My doctor called me back within an hour and told me what she thought was going on. While I waited for that call I did some digging and discovered that MAO inhibitors are contra-indicated for Rytary. I'd also found a warning that Tumeric is a natural MAOI. She'd come to the same conclusion. For one thing, the black pepper extract can multiply the turmeric's effect and is a bit random, depending a lot on individual reactions to it. I've always been very sensitive to almost all herbs and meds.

Yesterday, my wife and I were making chili and she added a lot of turmeric without thinking. It's always been just something that we vaguely assumed was good for us. Lesson learned!

So, that's my story. Not nearly as dramatic as yours, but from it, I hope that you and others can see that assuming something is safe might not be safe. And to others who doubt: yes, it really can happen.

I'm very glad that you made it back to us, Marc. Stay as safe as you can in these strange times!

laglag profile image
laglag in reply to JAS9

Glad you figured it out! Do you take B1?

MBAnderson profile image
MBAnderson in reply to laglag

Yes, usually 500 mg/day

laglag profile image
laglag in reply to MBAnderson

Isn't it nice to feel so loved! You are a hero Marc!

JAS9 profile image
JAS9 in reply to laglag

I'm not sure if you're asking me or Marc about B1. It looks like you're asking me? I take 3g/day but I'm not sure how much I took that day.

If you promise to be good - maybe. Hope things keep improving for you. Meantime I have a bottle needs opening

🍾

Welcome back Marc

Welcome back, may your recovery be swift keep walking!

Welcome back and wishes for a full recovery. Are you moving to FL or is that temporary until your wife finds a new place in MN?

It's until my wife finds us a single story place. 4 or 5 weeks I believe.

So pleased to hear you are on the mend after such an awful experience! You have a lovely supportive family and glad you are walking again. Here’s to a speedy recovery, wishing you all the best Marc.

Welcome back! You were sorely missed. I do believe many people here are quite fond of you.❤️

Hallo Marc !! Oefff....nice to read that things are getting better !I couldn't imagine that the agile and alive and kicking moving person,

that I've met in Mai, suddenly was "almost not anymore".

Like Despe asked : did you call Prof. J. ?

Something to do with your digestion ''?? (walking/running for me, depends a lot of my digestion....)

LGr., Jan.

MBAnderson profile image
MBAnderson in reply to JANVAN

Hi Janvan, No I did not call professor J, even though the tremor un my left hand has come back with a vengeance.

Welcome back Marc! It´s not really a welcome, because you really never left, even in that darkest hours. We must not forget that because we have Parkinson's, we don't get some other diseases. We do, and we also have some other medical issues, like everybody, although i also tend to think "Well, i have PD, so i got my share of disease for a life, so i wont get other health issues". But we do, we all do, and we have the extra work of finding if is Parkinson's related or is just something else that hit us. So glad you are still around, as i told you before, you and Lena changed my life path with your testimonials, and hope that you'll be here for a long time. Stay strong! Cheers!

pdpatient profile image
pdpatient in reply to Markbit

Very well said, mark it! Sometimes, we do tend to forget 😊.

RKM

MBAnderson profile image
MBAnderson in reply to Markbit

I, too, forget that part. That I felt like I was entombed in a block of ice was PD. Where the psychological stuff came from, I have no idea.

Confusion - delusions and hallucinations, are common in the elderly when weak with other conditions. I have seen it in both my parents (my Dad complaining about the noise from the party thrown in his ward the previous night, and how they stole the drink from his fridge, and trying to get out of an eye level window to stop burglars in the shed, and lots of others. My Mum telling my niece how she remembered giving birth to her, and forgetting my Dad had died). On at least half a dozen occasions my sister (who is in the front line of caring for them) told me she was sure they were permanently brain damaged and would never be normal again - and both made full recoveries. Same story with Sue's godmother and others.

Drugs like cyclobenzaprine can contribute to the problem. Whilst mindful of the ambulance picture I posted, and the "comments section", I am a bit surprised it was prescribed for someone your age. The health care service in the USA doesn't get a good press on this forum. I am glad to be living in France.

Hope you are better soon. Welcome back

Welcome back!

Hurray hurray hurray! Good to 'hear your voice' - we've missed it and you. I'm already looking forward to hearing it again...Good luck with the changes ahead - your immediate family are obviously being amazing and your HU family is rooting for you all the way 💖

Can't believe you're already walking down the road. Well, actually I can!

If I can get shaven, I'll see you in Zoom this weekend.

Happy to see you are back Marc.

Marc, I’m so happy that you’re doing so well after your experience. Keep walking, no matter what. It’s probably good that you and your wife are moving to one floor living, even if you regain your capacities to baseline. Btw you we’re never gone!

Mark, So happy to hear from you. Welcome back.

Relieved to hear you're ok and glad you're back :-)

We missed you, Marc, and we were very worried, but in my heart I knew you’d be ok.

Many years ago my father had a similar experience and was convinced that he was going to die that particular night so he called each of us separately to his bedside to say our goodbyes. He was in his mid seventies then, and lived till he was 86.

It wasn’t your time and you have many years to go before your expiry date 💜

Hi Marc, I’m so very pleased ! 🤗

Such terrific news Marc! So happy you are on the road to recovery!! Welcome home 🏡

Welcome back, Marc! I am so relieved and happy to know that you are doing better.

Wonderful news Marc! Rebuilding your life and taking new steps with the support of your wonderful family ...so positive. Looking forward to seeing you on zoom again soon and hearing all about it.Chrissy

Marc, so glad you are recovering. I’ll rethink that flexeril I take once in a while. Carol

MBAnderson profile image
MBAnderson in reply to Goldencbc

Carol,

I don't know that it was that. Suppose there's no way of knowing for sure. So I'd be mindful of your experiences.

Will do!

Marc, this is such good news! I'm so glad you have those wonderful children who love you so much. Isn't that a blessing?! Keep walking.

So happy to read this post! I had recently reread your info about your journey with PD and really appreciate the thoughtfulness and thoroughness of your writing. I think every newly diagnosed person should read it. You have been a light for me and so many people on this forum. Look forward to talking again soon. Have a good day!

The Flexeril brand name has been discontinued in the U.S. If generic versions of this product have been approved by the FDA, there may be generic equivalents available.

I didn't know what this med is for, I searched it, and the above statement was on drugs.com/flexeril.html.

Latest generic equivalent was approved September 3, 2021. It is also contraindicated if one is on PD medication.

crimsonclover profile image
crimsonclover in reply to Despe

Wow. When you go to the generic (cyclobenzaprine) they do have the warning about Serotonin Syndrome but it is not worded the same as the Flexeril page so maybe it isn't as obvious that it is contraindicated for PwP? That is scary. :(

Despe profile image
Despe in reply to crimsonclover

I am not very fond of pharmaceuticals. . . My husband has knee osteoarthritis and his DO wanted to try ORTHOVISC injections (FDA approved, non-drug therapy made from ultra-pure, high molecular weight hyaluronan). She gave me a brochure with all the information. I searched it and couldn't find any contraindications with any drugs. However, he now complains more, after having three injections as his doctor prescribed.

I am so glad that you are back!

Can you come back? That question can be interpreted in so many ways. But, the answer is undoubtedly yes!

So glad You’re on the mend Marc. How Incredibly scary it must have been for you and your family. Wishing you strength and courage as you journey back to good health

I am so happy you’re on the mend, hopefully you will be in a new one level home soon.

Of course you can come back. This is not a place to come just when you are feeling happy. Just forget what you wrote - believe me everyone else has and ask for support. You will get more here than from a neurologist who has so little to say because they have very little knowledge. Dr. Costantini , although Covid got him, still has more of relevance to say to us victims of this bloody awful disease than the walking talking rooting tooting specialist who is supposed to have all the answers. Do try the thiamine. I am 76 and have found B1 to be a great help - especially going up and down stairs and with my hand writing. (I no longer have to ask perfect strangers in the supermarket if they can decipher my shopping list.)So chin up - onwards and upwards.

All good wishes for continued recovery!

Hi Marc, Please can you share type of exercises you had for days before you were admitted into the hospital? Did you have any neck exercises ? Didn’t you have intense physical activities days before going to the hospital?

MBAnderson profile image
MBAnderson in reply to Kia17

Kia, I was walking 2 miles a day, plus 1/2 hour in the gym 4 days/week which I did the day before. Nothing extraordinary. No neck practices.

Kia17 profile image
Kia17 in reply to MBAnderson

Thank you Marc

Marc, thanks so much for keeping us all informed! What a relief to see that you are doing better!I, too, am 75, and find there are some very challenging times, including a sense of, perhaps, dying, that could be very scary! When one is diagnosed with PD, and/or Ataxia, and/or other neurological ailments, there are, for sure, tough patches in the road, when dealing with chronic illness. You have been through a lot, and I was so glad to hear about you moving, nearer to where your daughter lives! I have done likewise, and it’s been a great source of support, understanding, and help, when needed, by my daughter, and her husband! I’m so pleased that you came back to blogging on HealthUnlocked.com! Your contribution is invaluable, and many of us deeply appreciate, your wise input! I am glad you are making progress with walking! I’ve had a number of problems with walking, over the years, including scary times, when my left leg would go all numb, when I was standing. So, I’ve had a few falls, and injuries over the years. I certainly can relate to your scary feeling, that you got, about dying!! You take care of yourself now, and let us know how things are going, for you, periodically! Stay safe!

Glad you are feeling better!!!! So glad you are back0😊

What wonderful news! Welcome back!

Hi, share your daughter's concern maybe a desk pedaler would help for now. Also wrist weights may help with your tremors. You're on your way back. See you soon.

Welcome home Marc x

So glad you’re getting the wind back in your sails, Marc! You’ve been a wealth of knowledge and positive energy for many more of us than you may know! One day at a time.. my best to you.

We are so relieved that you are back and obviously on the mend. You are well loved, Marc. Onward!

I think u are here for a long time.. You hit a low part but as you probably have done before hop right back on the horse again.. I believe any of us can relate in some way , what u fear .. Hang in there-live in the moment- There's lots to be grateful for!

🤗🤗🤗🤗

Marc.....You will come back, for your family and for us. It would be very boring around here without you! Hang in and do some meditation instead of rethinking this thing constantly.

Eric

I am so sorry that you had the 2 "thought to be end of life " scares!!! Thank you for writing that you are able to get up and walk on your own (although my guess is, just being able to get up at all is a blessing for you!!). Do take care and please do write back in with your progress.

I'm so glad you're on the mend Marc. We've been so worried about you. Take care and thinking of you

Marc. I am so glad you will be back. What a scary experience. I always look forward to your posts, finding them always informative. Do you think there is any connection to your recent procedure in Europe?

I’m so happy you are doing better! I can totally appreciate the victory you must have felt walking down the street. Great job! It is so nice that your daughter cares about your safety though…

😁 without question, WELCOME BACK!

Thank you, thank you for all the well wishes. It warms my heart.

I’m really sorry to hear what you’ve been through Marc. I don’t check this group very often so didn’t see your other posts. I’m pretty sure very high blood pressure is a symptom of serotonin syndrome. As most people have their BP checked in any hospital admission, was your BP very high? I hope you recover soon.

It's down now (5 hours later.)

I think the thought that I was dying was itself a hallucination or at the least severe confusion because when the drug wore off, I didn't want to die. In other words, it was the drugged me that was knocked off the horse. The real me never left the saddle.

You are right. I see how.

pallido-thalamic tractotomy. I believe (a long time ago ) she offered that as a name she responded to.

Never mind MarcJust glad you're back and hope you get the quality of medical expertise you need to restore your health

my apology for an over reaction

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