Guest guest Posted May 12, 2007 Report Share Posted May 12, 2007 ly, no, I can't help but my husband, 72, has had the same orthostatic problem for several yrs. I'd have to look up in my notes just how long it has been, but I know it has been at least 5 yrs, perhaps more. We went through a period where he had the same high numbers you mentioned and then the low ones. He'd zonk out and collapse, fall, couldn't get up, etc. We tried all sorts of meds through the yrs. and he is now only on Florinef, .lmg 2 times a day and he is off of all Parkinson meds, which he had been on. He takes Razadyne, for dementia and Seroquel at night. From what I know now, I truly believe that there isn't a medicine that will turn things around... this is a malfunctioning Autonomic Nervous System. It has truly done more to wreck our lives than anything because you can't predict when the B. pressure will sky rocket. Going from hot to cold or vice versa seems to trigger the low readings, or after a meal, after a bowel movement, after exertion, when thirsty, to name a few. All I can say to you is that he had been on Sinemet and Namenda, which are known to affect the blood pressure and now that he is off of them and only taking the Florinef, he is stabilized. Whether or not this is a coincidence, a spontaneous occurrence, or the Florinef, I don't know. He wears Futuro stockings and his legs are elevated most of the time. I certainly can identify, that is for sure and I do hope that your husband can get the appropriate help. If you have other questions, I'd be glad to answer. Arlene ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2007 Report Share Posted May 13, 2007 Oh Pat. I'm so sorry. I hope that we can talk today via phone... You have my #. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2007 Report Share Posted May 13, 2007 oh sweetie, i understand the orthostatic bp that is what my dad unofficially died from his bp just started dropping leveled out for an hour and then started dropping again until he died, he was like this for only 6 months, but i know my dad as well, he had promised his mom that he wouldnt die before her she died in aug 2005 and he gave up less than one month later, giving his sister enough time to grieve for her before he joined her. i wasnt there due to a 'misunderstanding' from teh nurse that called me but one of dads favorite nurses were there when daddy died thankfully and she said he went very peacefully pointing to teh heavens saying mommy, so i am sure my grandmother waited for him to jion her before finding her husband/my dad's dad. the official cause of death was lbd on teh death certificate even though we didnt have an autopsy but his md the nursing home md and the neuro all agreed taht dad was symptomatic for lbd. good luck adn sorry to tell you my tale. hugs, sharon a-m ---- mimiartsy wrote: My husband Mike has been sent back to the hospital with BP 250 laying down and 70/50 when standing...he got out of one hospital Wed and was sent back to rehab...I got a call from rehab and they told me he was suicidal and tried to jump out a window..he also struck someone and was exhibiting violent behavior...they gave him a one on one aide and called me in to calm him down....he is now back in the hospital with a one on one and is confined to bed because of his BP..he also has no strength and can not walk..he is paranoid ,confused,delusional and can not be left alone...I was told that it comes to a point where the meds can not help control the BP anymore??????????? ne has not been out of the hospital and rehab for over a month....Does anyone know where we are with this??? meg {mike dx 1/2005LBD is orthostatic and has CDiff..we know it goes back to 2003 in hind sight and has REM disorder forev -- I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery .After that he developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when his blood pressure fluctuations started dropping without coming back up on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2007 Report Share Posted June 16, 2007 Oops,I let the blonde out of the bottle.I meant to say prescribe. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 The other med besides Carbidopa/levodopa (Sinemet) that Dr. Boeve suggests is Pramipexole (AKA Miraplex and Sifrol.) You can find dosage recommendations here: http://www.lewybodydementia.org/docs/DLB-BoeveContinuum04.pdf ----- I did a quick search on our message board about Miraplex and found this post: http://health.groups.yahoo.com/group/LBDcaregivers/message/12528 ---- Also found this: What other drugs will affect risperidone? Before taking this medication, tell your doctor if you are taking any of the following medicines: carbamazepine (Carbatrol, Tegretol); phenytoin (Dilantin); phenobarbital (Luminal, Solfoton); clozapine (Clozaril); fluoxetine (Prozac) or paroxetine (Paxil); rifampin (Rifadin, Rimactane, Rifater); or medicines used to treat Parkinson's Disease such as levodopa (Dopar, Larodopa, Sinemet, Atamet, others), bromocriptine (Parlodel, others), pergolide (Permax), pramipexole (Mirapex), or ropinirole (Requip). If you are using any of these drugs, you may not be able to use risperidone, or you may need dosage adjustments or special tests during treatment. There may be other drugs not listed that can affect risperidone. Tell your doctor about all the prescription and over-the-counter medications you use. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start using a new medication without telling your doctor. ---- One side effect of Miraplex - extreme sleepiness http://tinyurl.com/2wzyja ---- Hope the above helps... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 Also look into Neupro... FDA Approves Neupro Patch for Treatment of Early Parkinson's Disease May 9, 2007 The U.S. Food and Drug Administration (FDA) today announced the approval of Neupro (rotigotine transdermal system), a skin patch designed to treat symptoms of early Parkinson's disease. Rotigotine is a drug not previously approved in the United States. Neupro is the first transdermal patch approved for the treatment of symptoms of Parkinson's disease. Parkinson's disease, which belongs to a group of conditions called motor system disorders, results from the loss of dopamine-producing brain cells. Rotigotine, a member of the dopamine agonist class of drugs, is delivered continuously through the skin (transdermal) using a silicone-based patch that is replaced every 24 hours. A dopamine agonist works by activating dopamine receptors in the body, mimicking the effect of the neurotransmitter dopamine. Read more: http://www.fda.gov/bbs/topics/NEWS/2007/NEW01631.html Also read this: Rotigotine As Levodopa Adjunct Is Effective In Advanced Parkinson's Disease May 3, 2007 Transdermal rotigotine (Neupro) up to doses of 8 and 12 mg/day as adjunctive therapy to levodopa significantly decreases " off time " in patients with advanced Parkinson's disease, according to phase III data presented at the 59th Annual Meeting of the American Academy of Neurology (AAN). A. LeWitt, MD, professor of neurology at Wayne State University in Milwaukee, Wisconsin, reported results in 351 patients with advanced idiopathic Parkinson's disease who had been randomized to placebo or two target doses of rotigotine (up to either 8 mg/24h or 12mg/24h) for up to seven months. Rotigotine is a non-ergolinic dopamine receptor agonist available as a patch for once-daily use. Read More: http://www.medicalnewstoday.com/healthnews.php?newsid=69814 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 > > Jackie, > > I think Sinemet is for the PD and if I remember correctly the dementia and PD drugs fight. Most people talk about getting just the right amount of both to make them work. Maybe someone here can help. Or go to the " links " at the bottom and check some of the links about drugs. > > You can also go to the " messages " at the bottom of this and go into Yahoo and do a " search " in messages. > > I didn't need to use this drug, but I do remember others saying it took a while to get a " right " balance. > > Hugs, > > Donna R > > Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. > She was almost 89 when she died in '02. No dx other than mine. > > > Help > > Okay everyone I finally feel comfortable enough to write more often > and now ask for help.I know this has been addressed before but at the > time it didn't pertain to Hubby.He has been on Exelon since dx'd.It > took over a year to get him up to 3mg 2xd.Risperdal(I know Iknow) 0.5 > 2-3xd.It works great for him.Before he took it his delusions were > HORRIBLE and I do mean horrible.Now no delusions and no > hallucinations.His neurologists wants him on Sinemet 25/100 1/2 up to > 3xd.I'm still trying after almost 6 months to get him on the second > half.I feel like it makes him vacant.Like there isn't always someone > home.Does anyone have any alternitive to the sinemet that I might ask > for.I know you can't subscribe but you can all give me your expert > opinions. > He is also on Lexapro 20mg 1xd to keep away the boohoos.Hyzaar for > H.B.P.and Lovastatin for Cholesteral. > His symptoms,now that I look back,started 12 yrs ago.Proceeded to get > worse after 6 by-passes in 2000.Really came to a head after 2 > Cataract surgeries and a Prostate procedure in 2004.Finally Dx'd with > Vascular dementia from 35 yrs of Diabetes,Secondary Parkinsonism and > L.B.D. > Now that we know what he has and are treating it it is a more gentle > roller coaster. > Thank you again for all the love,hugs,support and information. > > Jackie > > > Thank you Donna, It is so much easier to talk to someone who has been there or is there.Sometimes even the Dr's don't have as much knowledge as those who are living it.At least when we get info from all we can go to our Appt's armed with good information. Thank you again, Jackie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2009 Report Share Posted January 17, 2009 http://health.groups.yahoo.com/group/miralax/files/--- Subject: HelpTo: miralax Date: Friday, January 16, 2009, 1:34 PM My daughter wants to give my Grandson Miralax to "clean" him out. Please help me with why she shouldn't. I know miralax is not good for anyone, but I need to tell her why.ThanksDeb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2009 Report Share Posted January 17, 2009 First the PEG is a synthetic form of pure poisen as far as im concerned. Tell her to insist on magnesium citrate for cleanout, this was what was always used for cleanouts befor the horrid PEG came along. I believe that the PEG destroys the nerve cells in the intestinal tract and this is the cause for intestinal desensitising (sp) and the need for more and more over time. Even 1 cleanout with the PEG is dangerous, we learned this first hand. The hospital started the PEG and then by the next day was admitted into ICU, apparently the PEG can cause potasium(electrolytes) drops so low that the heart starts to have problems and they can actually have a heart attack. When my sons potasium levels was checked to see what the levels was befor the PEG cleanout, they was normal. There is no reason the magnesium citrate cant be used(plus I fell the magnesium citrate cleanse is a good start to the gi healing process). It is more hassle due to taste, but the PEG isnt worth it. Jennie<>< > > > Subject: Help > To: miralax > Date: Friday, January 16, 2009, 1:34 PM > > > > > > > My daughter wants to give my Grandson Miralax to " clean " him out. > Please help me with why she shouldn't. I know miralax is not good for > anyone, but I need to tell her why. > > Thanks > Deb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 I wondered if anyone could help/advise with any experience they may have. I have been seeing a 72 year old lady for about four weeks now. She presented with eczema type rash/patches on the front of one shin covering about 65% of the shin. It was red, hot and itchy - wasn't infected and hadn't really " broken out " or was weepy. The other leg had only two or three patches of dry eczema type patches but only tiny areas. She had some other dry areas on her low back but nothing else anywhere else. She is very fit/active/ walks three to four miles daily, still does part time volunteer work, slim build, a bit of a worrier, on no medication but various supplements which i've checked and gone through. No high blood pressure or any other medical conditions. Her husband had a stroke a year ago so she has had a fairly stressful year, which is now getting better. I treated her with a skin wash, internal mix and a cream. She returned after two weeks with a great improvement, the back had almost completely gone and the bad leg was less red, the cracked areas had healed and the itching/heat was much improved. I continued the treatment and today she returned saying that week three showed a continued improvement then last week suddenly became dramatically worse. On examination of her leg today it is red, hot, fiery, she has ankle swelling and the front of her whole shin is red rather than the patchy areas. I've seen a similar situation with another patient who actually had diabetes and her blood sugar levels were wildly out of control but i've done a urinalysis on this lady and it showed normal. I don't have my prescription book to hand to list my herbs but given that there has been three weeks of improvement I didn't think that they would be the cause. She said nothing has changed in her diet/lifestyle - she has done more walking but that's all. Has anyone any advice? I'm concerned about infection so intend to make sure that the area does not become infected. She is still very keen to work with herbs rather than steriods. Any advice would be gratefully received. Jean Quote Link to comment Share on other sites More sharing options...
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