Gastroparesis

[Littlerody]

I was diagnosed with ibs when I was 45. I went back on birth control pills which stopped the attacks within a few months.  5 years later I began pd symptoms.  2 years later at 52 I was diagnosed with early pd. I was still working so I needed quality of life.  I left work at 57 2 years ago taking c/l every 2 1/2 hours. I've been through different agonists with bad side effects.  I've been taking azilect once a day since diagnosis.  I'm up to every 2 hours except during the night when sleeping I can go 3-5 hours without Meds. Oh I use cbd oil 500 mg all day and night.  No thc.  It helps with all symptoms and is uplifting.  

Now in the last 18 months the ibs started to recur.  The clenched was the rytary.  I took it last spring and almost ended up in the er. Since then the intestinal spasms have gotten worse.  Now we believe I have gastroparesis. I have followed heathers tummy tamers for living with ibs.  It had worked until our dog had to be put to sleep. Took about a month to calm things down. The stress triggered it again and probably the gastroparesis.  I am at a loss.  Like pd you can only treat the symptoms.  My dr is a movement disorder spec.  But I was told he only has a couple of patients like me.  My pd symptoms are mostly in the ans.  Spiking bp hot and cold dizzy gi tract problems/spasms. I'm now trying to find a practice or research facility working on this horrible symptom of pd. I am also talking with my gi dr but they are still in the dark about pd.  I am basically a house prisoner.  The pain from the gastroparesis and ibs leave me weak and disable the pd Meds.  Antoine like me out there??? Judy

[Bailey_Texas]

Hello  Littlerody 

Sorry to hear you are in such a bad way. Hang in there  some one here may be able to relate to your problem.

How much C/L do you take. 

You may be under medicated.

i take 

Meds 1 50/200 extended release carbidopa levodopa and 1 25/100 carbidopa levodopa every 4 hours 5 times a day. 1 6mg requip 24 hour and 1 azilect 1 time a day. Have been on this regiment for 4 months.

[Littlerody in reply to Bailey_Texas]

I take 1 azilect a day.  I take 1 prempro (hormone rep therapy) a day I take 25/100 c/l every 2 hours starting at 6 am.  I take 1/2 c/l er 25/100 every other dose.   I have used many agonists all of which I had bad side effects from after so long. I even tried to lower my prempro and that also caused the spasms to get worse.  I take my last daytime dose at 8 pm and go to bed at 9 typically. I usually sleep 3-5 hours. I take the next dose and go back to sleep for another 3-4 hours.  I also use the cbd oil 500 mg all day and night.  Thanks for your input. 

[beauxreflets]

Hi Judy,

Do you get any Physiotherapy? Or do any gentle stretching exercises?

Regards

Andy

[Littlerody in reply to beauxreflets]

No therapy and was going in my pool every am doing water aerobics but I'm weak and feel faint in ams lately.  I do stretch every day when I'm up to it.  I've decided to go for the scan just to rule out anything else.  Thank you for your input. Judy

[answerseeker]

Hi Judy,

I'm Judy too. My husband is 11+ years since his PD diagnosis.

See if you can get your hands on a book called, "Unwinding the Belly" by Allison Post. This is a non-medical approach to helping your body process stress in a different and healthier way. It includes breathing techniques and gentle massage. The benefits can go beyond helping your gastro symptoms and perhaps tame some of the PD issues as well.

Here is something very simple that you can do for yourself while you are waiting for your doctors to figure out next steps medically.  I encourage you to take a look and see if it speaks to you. You can see description and reviews on amazon.com

Blessings!

Judy

[Littlerody in reply to answerseeker]

Thank you so much Judy I will pursue what you've suggested and look at the book.  Judy

[dannydarling]

What is cdb oil

[Littlerody in reply to dannydarling]

Cannibidiol.  Hemp oil with no thc.  Healthyhemp.com. Lots of info there.  Judy