Need your help on this one. Please provid... - Cure Parkinson's

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Need your help on this one. Please provide your input.

John_morris71 profile image

Since a couple of weeks my mother is having a problem. While walking or getting up to walk (after sitting on the couch watching TV) or a few times after getting up from bed, her knees buckle as she tries to walk and she collapses like a house of cards in a heap on to the floor. During that moment, she does not respond to any verbal signals (like me asking her to stand straight, I am holding her while she walks or gets up - all the time) and seems lost staring into space. I then let her lie on the floor and after a few minutes carry her to her bed or the couch depending on her location. She is then fine in less than an hour or sometimes within a few minutes. Other than these episodes ( a couple of them per day at least), she is fine and can walk for 25 to 30 minutes during her daily routine etc.

She is on Levodopa ( totally 5 tablets a day - 1, 1, 1.5,1.5 ; and I give her NAC - 1000 mg daily and also she is on 1 tablet a day of 100 mg zofloft ( in addition to a few supplements).

Thanks in advance for all your suggestions / input.

John.

33 Replies

This might be a stretch but my mom was having almost like mini seizures and it turned out to be a UTI. This has happened twice now and she’s not aware that she has a problem. UTIs do drastic things in older people.

Thanks for the input. Did a UTI test for her and the result came out as negative.

She could have orthostatic hypotension. Her blood pressure may be dropping when she stands up and when she goes to move, she drops. My husband had it. If you have a blood pressure cuff, check it after she has been sitting for awhile and then again when she gets up. Report the findings to her doctor. It is a symptom of PD

My thoughts exactly. The clue is she is unresponsive immediately after falling - it takes a little while to regain consciousness after fainting upon standing.

John, if you do not have a blood pressure cuff it is essential to get one and compare her standing blood pressure to that when sitting or lying down. Ideally these numbers should be the same. A drop of 20 points or more in systolic blood pressure upon standing meets the medical definition for orthostatic hypotension.

If she is suffering from orthostatic hypotension she should also be checked for supine hypertension - high blood pressure upon reclining, especially in the evening. No intervention to raise her blood pressure should be undertaken prior to this check.

Her blood pressure is normal when she is doing OK. When she panics it shoots up and so does her tremor. However, all those Digital blood pressure meters give erroneous reading due to her PD - especially while she has tremors.

I’m ten years Parkinson’s and I need 1600mg a day levodopa.

“The New Parkinson’s Disease Treatment Book”

Dr. Eric Ahlskog,

Chair of Movement Disorders

Mayo Clinic

As discussed in Chapter 17, there are no limits on the number of doses per 24 hours, except as limited by common sense.”

justhavefun2 profile image
justhavefun2 in reply to

Thanks for the book information, RoyProp! I think I might check it out.

If you go to the Davis Phinney foundation, if it's stil going on, they were offering that book free of you downloaded it. I got mine for $4.99 because I wanted a hard copy. The Davis Phinney Foundation is a wonderful asset. Also Dr Michael Okun, the executive director of the Norman Fixel Institute in Fla a top rate "center of excellence" for care of Parkinson's, has a new book

"Living Well With Parkinson's " that is also very good.

in reply to

It's worth noting that Dr Ahlskog suggests that most do not see any improvement above 250 mg for a single dose, so assuming a 3-4 hour dose interval and 250 mg per dose interval, you get the following maximums:

3 hr --> 8 doses --> 2000 mg per day

4 hr --> 6 doses --> 1500 mg per day

Also, although he doesn't discuss it I assume he is talking about the Levodopa Equivalent Doses (LED). For example, a 200 mg c/l CR mg tablet has an LED of 140 mg (since it has a availability of 70%).

@john_morris. Take her to a specialist. Depending on age, it could be anything. Even Zoloft.

RKM

Thanks for the input. I will look into zoloft dosage and if it is too high for her.

Check on side effects of Zoloft, and NAC too. Also their dosage...same for the other supplements. Almost all the supplements I took were contributing to my orthostatic BP.I had to rework things.

Dragona profile image
Dragona in reply to KERRINGTON

Hi can nac cause orthostatic hypotension thanks

John,

If the issue turns out to be orthostatic hypotension (OH), it is worth mentioning that Levodopa, dopamine agonists, Zoloft/Sertraline and NAC can result in hypotension. The combination may be synergistic toward hypotension. It is also a common symptom of PD. So this could be a quadruple whammy toward orthostatic hypotension.

jamanetwork.com/journals/ja....

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

pubmed.ncbi.nlm.nih.gov/884...

michaeljfox.org/news/ask-md...

Assuming that the use of NAC is to increase glutathione in the case of your mother, alpha lipoic acid in the r-ALA form (r-ALA) may act as a substitute for NAC as both are well noted to increase glutathione and is a highly potent antioxidant also. r-ALA is also known to help neurogenic orthostatic hypotension (NOH) in some cases. The pulse rate when standing can help determine which type of orthostatic hypotension is at play in your mother's case, NOH or OH.

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

In any case, ALA is much less likely to contribute to the OH, if that is the problem. Some members have reported issues with ALA, but this seems to be very individual so as usual, it will come down to trial and error.

Art

Thanks will look into it soon.

Yeah, this happens to my husband when he is a) fighting a UTI or b) his blood pressure is too low so standing makes it drop critically low. So both are good ideas to check.

Lying down brings the pressure back up, so that’s a good thing to do quickly if possible. Try to keep her from losing consciousness...I massage and move his legs and feet for this and try to get him seated or lying quickly.

It's so complicated. My husband was on Florinef for OH, but had to come off it, (after a few years) because his blood pressure started going up very high. The interesting thing about that was that his bladder problem disappeared.

He had many falls standing at the toilet for too long. He now sits. He's had no falls at all since starting on mannitol in late 2019, as his blood pressure doesn't drop as low and also, of course, sitting on the toilet helps.

My neurologist tells me that drinking 400ml of water will prevent low blood pressure for many hours. Is your mum getting enough liquid? It can be difficult.

MarionP profile image
MarionP in reply to Astra7

So will eating salty.

100 mg Zoloft is quite a lot if she is tiny. How much does she weigh?

Here is a side effect from the nz medsafe page. medsafe.govt.nz/profs/Datas...

Some of those sound like they might apply.

“Serotonin Syndrome (SS) or Neuroleptic Malignant Syndrome (NMS)

The development of potentially life-threatening syndromes like SS or NMS has been reported with selective serotonin reuptake inhibitors (SSRIs), including treatment with sertraline. The risk of SS or NMS with SSRIs is increased with concomitant use of serotonergic drugs (including amphetamines, triptans and fentanyl), with drugs that impair metabolism of serotonin (including MAOIs), antipsychotics and other dopamine antagonists. SS symptoms may include mental status changes (e.g., agitation, hallucinations, coma), autonomic instability (e.g., tachycardia, labile blood pressure, hyperthermia), neuromuscular aberrations (e.g., hyperreflexia, incoordination) and/or gastrointestinal symptoms (e.g., nausea, vomiting, diarrhoea). Some signs of SS, including hyperthermia, muscle rigidity, autonomic instability with possible rapid fluctuation of vital signs, and mental status changes resemble NMS. Patients should be monitored for the emergence of signs and symptoms of SS or NMS syndroMe”

My husband was on this at 50 mg and it made him highly agitated and he weighed about 90kg at the time,and is 6 foot 2. Some people just can’t tolerate as much of a drug as others can.

Thanks for the info. My mother is 78 yrs. old, 5 feet tall, and weighs 103 pounds. She is on 100 mg Zoloft taken once a day and has been on this dose since almost 4 -6 months. Previously she was on a 50 mg dose. I will look into reducing zoloft from 100 to 50 mg.

Yes that does sound like she is petite. Was she having the troubles on the lower dose? You will need to go very slow with the reductions. I just reduced his by a sliver every few weeks and now he just takes about 1/6 of a 50 mg one. He found it way too anxiety inducing but when he stopped completely he relapsed about 2 months later even though he decreased ever so slowly. I really think the last little bit of these things are very hard to get off as they do all the work and the rest just washes around surplus. I think some people need nowhere near a full dose of these things they are so strong.

All the following produce similar symptoms, so belay specialist, start with a primary care physician and go provide good history too, look at all the following to avoid bait-and-switch fuck-ups which she can ill afford:

Mini strokes? Called TIA and can accumulate. Source of dementia. Very, very important to see doc as some can be minimized, or "the big one" put off, if recognized and treat in time (like an hour or two, so you must be vigilant and timely responsive in order not to lose her much worse, every small or large stroke met fast is preventing a drastic downturn).

"Absence seizures"? Same as above.

Arterial sclerosis, hardening, narrowing? Consequence of aging. Less perfusion, oxygen, fuel.

Sugar probs or some sort of insulin thing?

Postural hypotension? Drop of BP upon initial standing, causes dizziness, disorientation, loss of motor control, loss of consciousness & balance, fainting, lost perfusion, FALLS, Same as above.

"Sundowning"? I.e., alzheimer's or any of half dozen other dementias? Yes.

All three or four or five operating, interacting, converging? Possible one or more of the above. Yes.

Meds out of balance, dehydration? Nutritional deficiency (e.g., iron)?

Infection & inflammation somewhere (anywhere)? Possible, definitely. Can put you into all kinds of problems, including those you've described.

Above our pay grade, and yours. Get thee to a doctor. Don't fiddle while Rome burns, get moving. ASAP. !!!

If you can get your Mom to an autonomics unit where she can be tested for conditions which may be relevant, they can run some standard tetsts, title tabel tests etc and see if it's something like what others have mentioned like POTS or synascope. Best of luck. So sorry you guys are going through this.

Thanks for the input. Will give it a shot if it continues.

I'm not downplaying what you and your Mom are experiencing, I want to be clear that I understand it's very scary and concerning. That said, if it's something like synascope/POTS, there's loads of options that are safe and effective. Even just simple lifestyle changes like compression socks are very helpful.

May I suggest, just as an interim measure that can't hurt, until you see a Dr of course - that you ask your Mum to make sure her feet are elevated slightly while watching TV and not to sit for too long (no longer than say 30mins). Once ready to get up, do so very slowly. Talk a little walk around and say close to stable furniture. If you notice that you're Mum is feeling like this again, you can sit her down and place her head between her knees for a minute or few. Alternatively, lie down.

I'd also make a note of when it's worse, so in the morning or in the evening. Before food or after food, is the meal heavy? And, before or after meds, toilet, bathing. Is tinnitus or a change on hearing present? You may begin to see a pattern aside from sitting and watching tv and noted symptoms. For example it might be that your Mom is sat for up to an hr, in the same position, and has had a heavyish meal just prior or while sat. This can cause blood to pool in the abdomen. When the brain doesn't get enough blood/oxygen/profusion, what you've described can absolutely happen.

Stay safe and I wish you guys the best!

My husband had orthostatic hypotension before PD diagnosis.. He was being treated for depression in hospital. When I finally convinced them to check his blood pressure after our daily walk (he was always dizzy when he stood up, if we'd rested somewhere) they discovered his blood pressure went from normal to 60/40!..panic stations. He was diagnosed with PD soon after.

It's been a balancing act with medications. In more recent times his blood pressure started going up. It's probably what park_bear called supine hypertension. His blood pressure goes up in the afternoon. He's off the florinef to raise his blood pressure and takes medication late afternoon to keep it down overnight. It's worn off by the morning. It took awhile to get the medication right. His specialist is wonderful...another one who really cares.

One of the many improvements since we started him on mannitol in late -2019 has been that his low pressure doesn't go below 100/60.

We have a monitor and he's worn a 24 hr monitor a number of times for heart and blood pressure.

could she be experiencing strokes? They would make one collapse. Some strokes (deoending on location) are less damaging than others, I would check for stroke.It would also explain communication difficulty.

Hi John,

It has been about a month since you reported your mom's collapsing into a heap upon standing or sometimes walking. I was just wondering if you were able to have her doctor figure it out or if you were able to resolve the problem?

The doctor has no clue. However, she is not doing that often now. It is more of her being adamant than anything else. She does not like to walk ! She still does it at times, though not as often. So keeping fingers crossed and hoping that it goes away.

If your mother did no have pd what would your thoughts be? I shoul think epilepsy followed by TIAs.

I really don't know. But she has PD and now the problem is not that often;

John, i don’t have answers. I just wrote what came into my head. I have this concern that once one is diagnosed with a major condition this takes over. It is given precedence over other conditions which may thus be overlooked and not treated. I m currently waiting 3 months to see an endocrinologist about various issues probably caused by hormonal upsets which have little to do with PD. The usual referral rate is much shorter.

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