Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 05-03-2017, 12:56 AM #21
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
Default

Carole,

How did it go when you tried John's suggestion of observing how your vision problems vary (or don't vary) over the course of the drug cycle?

Another thing you could try (as an experiment) is to change from taking one 25/125 tablet four times a day, to taking half a 25/125 tablet eight times a day. It might be a bit onerous, but it would just be for a few days. You could set up eight alarms on your mobile phone to remind you when to take the half tablet.

Jeff
jeffreyn is offline   Reply With QuoteReply With Quote

advertisement
Old 05-04-2017, 12:20 AM #22
Jazziecat Jazziecat is offline
Junior Member
 
Join Date: Apr 2012
Posts: 25
10 yr Member
Jazziecat Jazziecat is offline
Junior Member
 
Join Date: Apr 2012
Posts: 25
10 yr Member
Default

So far I haven't noticed off/on times. It's hard to determine because dry eye syndrome is often found in PD people and that alone makes it stressful.

Might be a good suggestion about cutting the pills in half but I will wait until next week before making any further changes. LOL, one more thing to conquer....cutting the pills by someone who can't see the pill cutter clearly along with shaking right hand. I'll give it a try if the neuro agrees.
Jazziecat is offline   Reply With QuoteReply With Quote
Old 05-04-2017, 12:37 AM #23
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
Default

If I've understood you correctly, you are saying that you haven't been able to detect any changes in the "flashing stars/lights" over the course of the drug cycle (or over the course of the day or night).

Is that correct?

Last edited by jeffreyn; 05-04-2017 at 01:01 AM.
jeffreyn is offline   Reply With QuoteReply With Quote
Old 05-04-2017, 02:29 AM #24
Jazziecat Jazziecat is offline
Junior Member
 
Join Date: Apr 2012
Posts: 25
10 yr Member
Jazziecat Jazziecat is offline
Junior Member
 
Join Date: Apr 2012
Posts: 25
10 yr Member
Default

Jeff,

It's all so weird and so complicated and very hard to explain.


When I first open my eyes in the morning, my white ceiling is covered with large blue dots as well as the flashing stars. Later those dots shrink to pin size. I never see a solid color any more. The dots are ALWAYS there but I have learned to mostly ignore them. When my eyes are extra stressed, a different pattern appears...it is as if I am looking through a cyclone fence....but this is not constant, but the flashing stars are.

If I see a truck going by, I can't see what company it is even though the letters may be huge. If it's a U-Haul truck for instance, I'll see the U-. Then my eyes adjust and I go to the next letter or two. Obviously I am reading here, so I can see. But my eyes can't adjust to take in the entire name. Same with people's tee shirts. I can make out one or two letters at a time, but if the person moves. I am lost as to what was printed on the shirt.

I don't drive but depend on cabs. I can barely make out if it's my cab or a car because the glare stops me from seeing, or if it gets dark, the street lights glare too. My eyes don't adjust and that's why I think it's a PD problem more than macular degeneration.

How can I read regular print but can't see what's on a big truck or car?
Jazziecat is offline   Reply With QuoteReply With Quote
Old 05-04-2017, 07:06 AM #25
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
Default

Thanks for all the extra information.

Being able to read print, but not being able to read what is on the side of a truck, seems to me like macular degeneration. My understanding of macular degeneration (admittedly limited) is that you can't see what is in the centre of your viewing area, only what is at the edges. The words written on the truck might be too big to fit into the edge of your viewing area. Do you have macular degeneration in both eyes?

The fact that the blue dots appear on the ceiling when you open your eyes each morning doesn't seem to me like psychosis. My understanding of psychosis (admittedly limited) is that it is not something predictable like that.

You said in a previous post that you can still see the "flashing stars/lights" when you close your eyes. My guess (and that's all it is) is that this might be a problem with the optic nerve or the area of the brain which receives signals from the optic nerve. I would suggest that you see an ophthalmologist, but I think you said previously that you've seen one or two of them already.

The experiment with the half tablets might still be worth doing. I can't see it doing any harm, at least. If the effectiveness of your medication is influenced by when you eat, you may have to adjust your meal times for those few days.
jeffreyn is offline   Reply With QuoteReply With Quote
Old 05-04-2017, 03:36 PM #26
Jazziecat Jazziecat is offline
Junior Member
 
Join Date: Apr 2012
Posts: 25
10 yr Member
Jazziecat Jazziecat is offline
Junior Member
 
Join Date: Apr 2012
Posts: 25
10 yr Member
Default

Why do people come to forums such as this? All of us are searching to improve our lives or those who we care for. We are reaching out hoping some one out there will have an answer. I don't know if my problems are caused by PD or macular or optic nerve. I haven't gotten much help from the medical professionals so far, but maybe someone has an answer.

I have a second condition going on. I went through an endoscopy and it was determined that everything was OK yet I get crippling abdominal pain, mostly after eating. My daughter came up through an internet search with a pretty close description of what's happening. I spoke to the GE doctor who did the endoscope and his answer is "that's too sophistcated for our practice". No suggestions as to what to do. PCP doesn't know. I get some relief using a heating pad or if it's really bad I use marijuana occasionally.

Let me explain a little more of who I am. I gave you a brief look into the discussion forum I started back in 2002. I'm not very active any more because the information needed is already there. It is a warning site for people who are considering a paricular surgery who are not given the proper information by their surgeons of potential and irreversable side effects. The surgery is performed for people with hyperhidrosis (excessive sweat) or blushing. (I have not had the surgery but do have hyperhidrosis) The surgery involves cutting or clamping the autonomic nervous system along the spine anywhere from T1 to T5. It is mostly performed on young people but some surgeons push to have it done as young as 7 years old. Undoubtedly the surgery is sometimes successful but I have heard from thousands worldwide of being left with devastating, life-changing conditions. Imagine a young man suddenly left impotent. You no longer sweat from the nipple line up...young athletes who can no longer cool down because their heads don't sweat or losing your hair and eyebrows and eyelashes because your head is so dry and your face wrinkles. Your hands are now dry but your body is soaked with compensatory sweat, but you are considered cured. Compensatory Sweat (CS) / Compensatory Hyperhidrosis (CH) in Photo Album Forum

I could go on and on with more devastating side effects. What message can I give these young people:? YOU CAN'T REVERSE WHAT HAS BEEN DONE BUT TRY TO IMPROVE OR MINIMIZE THE CONDITIONS BY RESEARCH AND REACH OUT TO OTHERS SUFFERING SIMILAR CONDITIONS.

This is what I am trying to do myself. I am reaching out to try and improve the conditions I am living with. I found the Nuplazid website and it gave me HOPE. The answers I got here gave me a better understanding that in spite of the website's promises, people know what might be real.

I thank you all for listening and apologize for using up so much space here. Just writing it out has helped. I am not ready to sit in a rocking chair for the rest of my life. There is too much life inside of me yet. Maybe, probably, nothing will get better but trying to improve my life keeps me going.

Carole
Jazziecat is offline   Reply With QuoteReply With Quote
Old 05-05-2017, 07:07 AM #27
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
Default

Carole,

I don't understand why you say "probably nothing will get better". As a direct result of your initiation of this thread, and your significant contributions to it, you are now much better prepared for your first consultation with your new neurologist next week.

You need to go into that consultation with a clear idea in your mind of what you wish to achieve from the consultation. You need to make it clear to the neuro how important your vision problems are to you, and that you are determined to find a way to improve your vision. You need to explain to the neuro that you have a plan for this, and that the first step in that plan is to determine, with his/her help, whether one aspect of your vision problems is PD related or PD-medication related.

If your stars/lights/dots problem is not related to either PD itself or PD medication, the second step in the process is to consult another specialist to continue the search for an answer. In this event, the neuro can help by recommending the type of specialist to consult next. Failing that, your GP is the one to report back to and ask for a referral to an appropriate specialist.

In other words, I don't think you can just print out the 3-step-process webpage and give/show it to the neuro. There won't be time for that during the consultation. You need to use it as a basis for your own process.

The whole purpose of my involvement in this thread is to help you prepare for consultations such as the one next week with your new neurologist, and any subsequent consultations with other specialists.

Best wishes for your consultation next week.

Jeff
jeffreyn is offline   Reply With QuoteReply With Quote
Old 05-09-2017, 10:23 PM #28
Jazziecat Jazziecat is offline
Junior Member
 
Join Date: Apr 2012
Posts: 25
10 yr Member
Jazziecat Jazziecat is offline
Junior Member
 
Join Date: Apr 2012
Posts: 25
10 yr Member
Default

I finally got to see my new neurologist today and to my surprise, we are trying a completely unexpected approach.

First of all, he does not think I am experiencing visual hallucinations due to PD. Not to say that I am wrong about seeing flashing stars/lights, just that it's not due to Parkinson's. What may be the problem is the carbidopa/levadopa. What he is having me do is to reduce the carbidopa gradually over the next few weeks until it is eliminated while increasing the amitriptylene back to .75 mg per day. He also believed it is possible that I don't have PD but Essential Tremors, for which he has other options to try. But first we will see how I do with the new regimen.

He was pleased that I had weaned myself off the Selegiline. It could very well be the reason why I developed high blood pressure (today was very normal for me 124/74). He stopped prescribing that med years ago when it didn't prove as effective as advertised. I absolutely did not want to be on the BP medicine and had stopped taking it with my PCP's permission, thus getting rid of several side effects that had developed.

I am very pleased with my new doctor. He is someone willing to work along with me to find a solution.
Jazziecat is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
eds195 (05-10-2017), jeffreyn (05-09-2017)
Old 05-10-2017, 12:05 AM #29
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
jeffreyn jeffreyn is offline
Member
 
Join Date: Apr 2016
Location: Australia
Posts: 352
5 yr Member
Default

It's great to hear that the consultation with your new neurologist went well.

When you say "reduce the carbidopa gradually over the next few weeks until it is eliminated", do you mean carbidopa/levodopa? If so, it sounds like a good idea.
jeffreyn is offline   Reply With QuoteReply With Quote
Old 05-10-2017, 02:02 AM #30
Jazziecat Jazziecat is offline
Junior Member
 
Join Date: Apr 2012
Posts: 25
10 yr Member
Jazziecat Jazziecat is offline
Junior Member
 
Join Date: Apr 2012
Posts: 25
10 yr Member
Default

Yes, carbidopa/levadopa. Sorry, I was lazy to type out the entire name.
Jazziecat is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
jeffreyn (05-10-2017)
Reply

Tags
hallucinations, neurologist, nuplazid, vision, visual

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Nuplazid for Parkinson's Psychosis Nan Cyclist Parkinson's Disease 0 12-03-2016 02:27 PM
Newbie! visual overload or visual clutter platinum Traumatic Brain Injury and Post Concussion Syndrome 5 06-22-2015 09:06 AM
Hallucinations: Help ashleyk Parkinson's Disease 2 07-27-2014 06:21 PM
Well I know someone here is taking a cruise, any one taking vacation real or imag? DiMarie Thoracic Outlet Syndrome 42 02-10-2014 01:39 AM


All times are GMT -5. The time now is 02:23 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.