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Orthostatic Hypertension & LBD
BillBRNC
Posted: Tuesday, September 12, 2017 9:04 AM
Joined: 12/2/2015
Posts: 951


I think this also might apply to other dementias, but I don't know for sure. Just reading about this. Studies show that people with Dementia with Lewy Bodies who have multiple episodes per week of orthostatic hypertension (dizzy when standing and similar stuff) have a much reduced life expectancy than those who don't have it. If you also add to it the regular issue of constipation, then life expectancy is further reduced. I think I might have known this all along, but had not focused on it much. Anyway, I have regular problems with getting dizzy and out of balance when standing up, plus I have daily issues with constipation (mostly controlled with Myalax). Sudden death is one of the things associated with this increased risk. I don't know whether to be happy or sad about this, but I wanted to pass it along. If you want to know about your flavor of dementia, just Google orthostatic hypertension and your type of dementia and find out what the literature says. Happy days.
jfkoc
Posted: Tuesday, September 12, 2017 9:45 AM
Joined: 12/4/2011
Posts: 13261


info from " the book':
  orthostatic hypertension
1.light headedness
2. fatigue

3. fogginess or  impaired mental clarity

4. NOT DIZZY

5. drugs that treat PD can exacerbate...limit to carbadopa-levadopa even though it is the most exerbating...spacing the tablets more important than overall number...the relationship of this med and effect on BP and when to take it is discussed in more detail and is important sitting/standing...What meds are you taking for other stuff?

5. O-H also related to meals

6. diuretic and "viagra" can effect

Constipation

1. diet/fluid primary treatment!!!!

2. Miralax OK...lubiprostone (Amitzia) by perscription good with L disorders

I did not find anything in the book referencing these conditions hastening death

 


BlueSkies
Posted: Tuesday, September 12, 2017 2:23 PM
Joined: 2/24/2016
Posts: 970


Bill, I have had orthostatic hypotension as long as I can remember ( that probably doesn't say much!)  Never opted for treatment, just was always very careful to always get up very slowly.  Has worked for me so far.  

PS... I would opt for sudden death.  Never was one for long drawn out goodbyes. 


BillBRNC
Posted: Tuesday, September 12, 2017 5:27 PM
Joined: 12/2/2015
Posts: 951


If you Google "orthostatic hypertension and dementia with lewy bodies and reduced life expectancy" you will find a number of articles from highly reputable sources that indicate that there is no question about OH and constipation reducing life expectancy for DLB. It is really quite worrisome but, as BlueSkies suggested, this might not be a bad thing for those of us with DLB. I'm not pushing this whole idea, only reporting what I've read.
jfkoc
Posted: Tuesday, September 12, 2017 6:55 PM
Joined: 12/4/2011
Posts: 13261


I copied your words...went through page one ...guess I missed what you saw.

I did find this;

www.lbda.org/content/longevity-may-be-impacted-orthostatic-hypotension-lbdhttp

This discusses the carbadopa-levadopa;

http://mentalhealthdaily.com/2016/02/11/sinemet-carbidopa-levodopa-side-effects-adverse-reactions-list/

I would look hard at what effect the carba-levo may have on you. Are you taking CR??

added: Ronald Pfeiffer ( wrote the textbook on Parkinson's and was helpful personally) symposium...go in to the thirty minute marker

https://www.youtube.com/watch?vaE_26J12AM&feature=youtu.be

 


alz+
Posted: Wednesday, September 13, 2017 5:29 AM
Joined: 9/12/2013
Posts: 2933


I found after years of constipation that magnesium MagOx 1 tablet prevents it. I have had blockages a few times so I do the few things that help, including walking a mile or more each day. When I am too fatigued to walk, I take more magnesium.

Seems what causes the symptom is more important than the symptom but then we live in a time when symptoms are treated rather than healing the disease cause.

Bill I am choking when I brush my teeth. Did you have a fix for that regarding sitting down? I choke more on the tooth brushing than general swallowing, have tried no toothpaste which helps a little. Seems my tongue and swallow motions are confused.

With ALZ I find my body prefers everything slowed down or its automatic functions get confused.

Interesting. 


BillBRNC
Posted: Wednesday, September 13, 2017 7:06 AM
Joined: 12/2/2015
Posts: 951


alz+, my swallowing problems seem to come and go now, as opposed to being an all the time problem. Don't know what did that, but I'll take whatever free time I can get. I found that sitting down helped with swallowing pills three times a day, plus drinking my constipation junk. I did the swallowing exercises that I found online, and they seemed to have really helped the problem. I think all you need to do is Google "swallowing exercises" or something like that and you find different versions of them. Or you can get you doctor to send you to swallowing therapy that would be paid my Medicare. Good luck. I find you experience with the oil to be very interesting. So the THC type is no good, and the non-THC type is good? We can get either one here in NC legally, at least I think that is true, but a doctor can prescribe Merinol, but that contains THC. I haven't tried any of this yet, but I am beginning to wonder whether I should give it a try. Bill.
jfkoc
Posted: Wednesday, September 13, 2017 9:38 AM
Joined: 12/4/2011
Posts: 13261


This is from  PDF;

http://www.parkinson.org/understanding-parkinsons/treatment/complementary-treatment/medical-marijuana-and-parkinsons-disease

this looked interesting also;

http://lewybodydementia.blogspot.com/2017/01/lbd-and-marijuana-part-1.html


BillBRNC
Posted: Wednesday, September 13, 2017 12:56 PM
Joined: 12/2/2015
Posts: 951


Heck, I just noticed I wrote that you can get either type oil in NC. Wrong! You can't get either type in NC. A law that won't likely be changed in my lifetime. We are a tad backward here in NC, but it is still a great place to live. My family has been here since the Revolutionary War, or a little before. A long line a dirt farmers until the 1900's, then my dad became a lawyer and I followed my dad into the swamp.
jfkoc
Posted: Wednesday, September 13, 2017 1:27 PM
Joined: 12/4/2011
Posts: 13261


Legality would not stop me. I was in the process of researching for 
Dick and was assured that if I knew a teenager I would have no problem obtaining.
obrien4j
Posted: Wednesday, September 13, 2017 1:36 PM
Joined: 11/18/2016
Posts: 420


Bill- give it a try, you've got nothing to lose but the cost of the product. The regular stuff has helped me with pain, nausea. etc. Doctors can't find the root of my stomach pain and won't prescribe meds. I am so tired of going to the ER and paying out the nose, and getting no medication to take home in the event this happens again. Which it will.  so this definitly takes the edge off. I need to try the CBD oil  to see if it gives the same response.
obrien4j
Posted: Wednesday, September 13, 2017 1:49 PM
Joined: 11/18/2016
Posts: 420


  1. And it hasn't stopped me either jfkoc! When I have these severe attacks of stomach pain and no doctor can tell me what's wrong, or at best, prescribe some pain medication, I need to be proactive and try to help myself. I stumbled upon this after having gone to the ER, once again, but this time the MORON doctor told me, when I asked for a prescription,  that he thought I could "work thru the pain". Are you kidding me?? I was furious! They barely took the edge off and then sent me home with nothing- all for $2000!! Last time, the doc gave me the good stuff and I was pain-free probably within the first 30 minutes.I am not a junkie- after the attacks, I do not NEED the meds. And I get it, with the rise of addiction to pain meds, they have to protect themselves. 
  2. So I stopped paying the hospitals and started paying someone who can help me. I do want to try the non THC CBD oil to see if it alleviates some of my issues, as well. 
  3. I have no idea why these numbers are popping up!

BillBRNC
Posted: Wednesday, September 13, 2017 2:01 PM
Joined: 12/2/2015
Posts: 951


jfkoc, I gave the wrong entrance to the research. Google "autonomic dysfunction and levy body dementia and reduced life expectancy." This will get you to most of the research. The point is that constipation, orthostatic hypertension, trouble swallowing, dry mouth and such are impacted negatively by the damage to the autonomic system caused by DLB, Parkinson's, and a couple other diseases. If you have this dysfunction along with DLB, then your life expectancy is lower than if you didn't have it. If you have it more than one domain such as orthostatic hypertension, dry mouth, constipation, and swallowing like I do, they say that life expectancy is much reduced due to the damage done to the autonomic system by DLB. At least this is how I read all of this. The sun just came out. Joy! Have a fine week. Bill.
BillBRNC
Posted: Wednesday, September 13, 2017 2:09 PM
Joined: 12/2/2015
Posts: 951


OK, I hope someone can put it out there in plain and easy words. Is the THC version the good one, or is it the non-THC version. In NC, I can legally get a prescription med that is a Tier One covered by Medicare that has a THC base. I think it is called Marinol or something like that. It is labeled for getting cancer patient to puke less and to get AIDs patients to eat more. But there is nothing to prevent a doctor from prescribing it for an off label use, at least that is my understanding. So, since it has THC, my question is whether the THC is the useful one or the non-THC is the useful one. I know not about what the oil one is. Anybody know?
jfkoc
Posted: Wednesday, September 13, 2017 2:31 PM
Joined: 12/4/2011
Posts: 13261


I believe Marinol is a synthetic. I will do some looking. I was looking for the CBD strain that was best. Iris always said we were pioneers so Westward Ho.

I am including this again. The whole seminar is on the autonomic system. Again, Pfeiffer is the Guru.

https://www.youtube.com/watch?vaE_26J12AM&feature=youtu.be


obrien4j
Posted: Wednesday, September 13, 2017 3:48 PM
Joined: 11/18/2016
Posts: 420


I don't want to confuse you Bill- reach out to alz+, she knows what she's talking about!
llee08032
Posted: Thursday, September 14, 2017 7:35 AM
Joined: 5/20/2014
Posts: 3857


Marinol is synthetic. A speech therapist can also work with swallowing problems.
julielarson
Posted: Thursday, September 14, 2017 11:18 AM
Joined: 9/30/2015
Posts: 1149


Bill, I take a THC CBD tincture that helps with everything from anxiety to sleep.. Not everyone likes THC because of the potential of making you feel high after taking it.. I can attest to the fact that I never feel high when taking the tincture and also after I take the same marijuana by eating it... I just fall naturally to sleep on it..
BlueSkies
Posted: Friday, September 15, 2017 12:03 AM
Joined: 2/24/2016
Posts: 970


Bill, 

CBD oil with THC works the best.  Rick Simpson oil (it's on YouTube) is the best.  Where I live it is not legal.  So I get the CBD oil with little to no THC.  I buy it from Charlotte's Web by the Stanley brothers in Colorado.  Go to www.cwhemp.com to buy, but before you do, call this # 719-347-5400.  They are realm of caring and will answer all your questions regarding product to buy for your illness and dosages needed.  They can sometimes give you a discount too as the best oil is about $200.  They are a wonderful help.  Please give them a call.  They are a volunteer run organization so can not always man the phones.  Please leave your number and name.  They will call you back.  They also have a website if you want to read about them first.  It is www.theroc.us

The oil is worth every penny!  It helped a lot with my anxiety, clarity of mind and even improved my aphasia.  It also helps me sleep.  When I forget to take it, my husband always notices.  So apparently even the CBD oil with little to no THC works pretty darn good.  Please do give it a try.  Let us know if it helps you.  

 


elainechem
Posted: Friday, September 15, 2017 12:48 AM
Joined: 7/30/2013
Posts: 5198


Bill,

Back to digestive issues. My hubby has a diagnosis of Alzheimer's and decades long problems with periodic bouts of nausea, vomiting, abdominal pain, bloating, and diarrhea. No one has been able to diagnose it. Any word on whether that might hasten his demise? We're six years in to dementia now, and he's still going strong.


BillBRNC
Posted: Friday, September 15, 2017 7:17 AM
Joined: 12/2/2015
Posts: 951


E, I don't think the constipation and reduced life expectancy issue necessarily applies to Alzheimer's. Not saying that it does or doesn't, I just don't know. Good luck.
alz+
Posted: Saturday, September 16, 2017 6:37 AM
Joined: 9/12/2013
Posts: 2933


Bill -

I wrote long post about this in section cbd experiment. Sorry I have been occupied this week with ??? and did not see your question(s) !

The Rick Simpson Oil with high THC was what I tried to CURE my ALZ. It is powerful and most people (non ALZ) get used to it after 5 - 10 days and no longer feel the THC. I could still feel it months later and my cognitive abilities were sliding, and it was not the same as CBD oil without THC.

The CBD I prefer (and it will be an indiviudal preference/experience) just makes me so functional. My mind goes calm, I can do math. Freaky but I remembered my credit card number and security code while ordering stuff on Costco last week. I was going to hunt for the card and the number just came to me. I have NEVER remembered a credit card number in my life. I go for a walk with Betty the dog and find I have been out for 45 minutes, not 5 and still feel ok.

So if you could get the oil I would try CBD (not hemp oil) first, see if it works. The youtube videos on Parkinson's and marijuana should give you a feel for what to expect. I think most of them are watching the shaking and stiffness melt away after using a vaporizer for marijuana. The people inhale it, smoke it and boom they can move. People see it and think it is fake. You tell me. It is about 10 minutes after I take oil I can talk walk and think.

this article claims no evidence for positive effect and that marijuana causes mood disorders and lung cancer. (no evidence for either)

http://www.parkinson.org/understanding-parkinsons/treatment/complementary-treatment/medical-marijuana-and-parkinsons-disease

Bill - this video is a guy I think you could relate - a former cop with Parkinson's who speaks for marijuana in blog Ride With Larry

https://www.youtube.com/watch?v=zNT8Zo_sfwo

http://ridewithlarrymovie.com/



alz+
Posted: Saturday, September 16, 2017 6:39 AM
Joined: 9/12/2013
Posts: 2933


what it looks like inside one dispensary

https://www.youtube.com/watch?v=_ztEOsnIXp4


alz+
Posted: Saturday, September 16, 2017 6:45 AM
Joined: 9/12/2013
Posts: 2933


Bill - I have no idea what might work for you because of the Lewy Bodies.

 I think the non THC oil might be better for you as it should not cause any sense of anxiety or weird thoughts. 

On the other hand the THC might be calming if from an Indica strain.

this is why we need dispensaries so we can work to find the best method of using and best plant strains for us, at that time.

I would look online for people using CBD for Parkinson's successfully and ask them for help.

sorry it took so long to get back. I am not an expert and I am willing to go to jail if I have to spread the word. We all deserve a chance.


alz+
Posted: Saturday, September 16, 2017 6:49 AM
Joined: 9/12/2013
Posts: 2933


Bill:

Links to people using CBD / marijuana for Parkinson's:

https://www.projectcbd.org/parkinsons-disease

https://www.parkinsonsrecovery.com/cbd

http://herb.co/2016/07/19/cannabis-and-parkinsons-disease/

 


 
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