IS THERE LIGHT AT THE END OF THE TUNNEL?

[claradragon]

Hi all

Still feeling a bit lala landish and I've noticed that with each increase of the dosage of neurontin I lose the the brain coherence that I've regained...FRUSTRATION!!!

This is the start of the third week on neurontin and I'm now increasing the dose from
100mg
1 in the morning 2 in the evening a couple of hours apart
to
100mg
2 in the morning 4 in the evening

Lots of postings over the last few days really should've warrented a comment from yours truly but between brain incoherence and working a twelve hour shift catching up and staying abreast of what's being discussed here has been a challenge!

Nadia thanks for the pics and i agree with jumpys sentiments that it is hard to explain how ill you really are when you look perfectly normal.

As for the restoril i find that every three to four days i take a night off purely to avoid addiction. I don't get much sleep (two hours max) on those nights but it is worth it and it keeps the restoril effective to some degree. I still haven't had the elusive eight hours i dream of but you never know it may happen!

Love and BIG hugs to you all

[jan3213]

Clara, it's Jan

Good to hear from you!! Don't worry about responding to any of us!!! As I said before, take care of you!!! Hey, I'm right with you on the elusive sleep!! Too bad we're across the pond from each other--we could phone each other in the middle of the night!! LOL

Take care!!!

Jan

[claradragon]

Hi all

It's been a long time since I've had the opportunity to catch up and I'm glad to see that the board is still going from strength to strength .
As for me,well I finally saw a nuerologist and he pointed out that there is a link with parkinsons.I have heard this mentioned before,does anyone have any information on this please?

[ViewsAskew]

Clara, maybe becat will remember better, but I seem to remember from the RLS conference last year that the link is from Parkinson's to RLS, not the other way. If you have RLS, you will not have a greater chance of getting Parkinson's. but if you have Parkinson's you are more likely to get RLS than the general population because of the missing dopamine. In RLS, you can't get the dopamine because of iron transport issues. With Parkinson's, the cells are dying and so there is less dopamine available. Both ways, there is less dopamine. RLS is an equal opportunity disorder, it can be induced by the lowered dopamine from either case.

So, the short(er) story: RLS and Parkinson's are related only in that both are caused by not having enough dopamine in the substantia nigra. That means that medications that work for one tend to work for the other. It also means that people with Parkinson's are more likely to get RLS. It does not mean that people with RLS are more likely to get Parkinson's

Hope this is as clear as mud .

Ann

[claradragon]

Yes thanks,clear as!

I was on gabapentin and restoril but now he's changed it to a combination of propranol,sinemet and restoril which I'm about to start hence the curiosity of the link between them.

I will say I'm a little apprehensive about this!

I came off the gabapentin to try and regain my brain,looks like I'm gonna lose it again!

[ViewsAskew]

If you can get him to change his mind and you haven't already had a difficult time, please try Requip (ropinerole) or Mirapex (pramipexole) (not sure the brand name in Europe). Sinemet is no longer consdered a good first choice among the dopamine agonists because such a high percentage of people get increased syptoms in the form of augmentation or rebound.

Ann

[becat]

OOoo Be still my heart......Clara,
It's just like old home week around here. I'm so glad to see your name and your post. So many oldtimers visiting this week.
I'm so sorry about the Parkinson's dx.......My prayers are that he's wrong.
Ann, your right. If you have Parkinson's, RLS is a higher possiblity.
RLS does not cause Parkinson's.
Again, with Ann on the Sinemet issue. I think some docs like it because it works faster than the other to types of this medication. However, there can be some serious side effects.
As normal, research these meds., read the list for yourself so that you can tell the doc your concerns.
Clara, I hope the sun shines on you with a warm glow. I hope your safe, what with the crazy stuff going on across the pond. I want you to know that your still loved and very missed around here.
Thank you tons for the update.
Don't let the time pass us so quickly.
Hugs, super big hugs to you.

[jan3213]

It's Jan

It's soooooooooooo good to see your name again!

I'm so sorry about the Parkinson's DX also! Please keep us posted if at all possible.

I'm so glad your safe. When your post popped up on my email notification, I WAS THRILLED to see your name! Talk about a blast from the past! It's funny how things happen. I was just thinking about you the other day. SPOOKY!

Like Becat said, it's good to see some Oldtimer's name's turn up!

BIG HUGS FOR YOU (((((((((((((((((((())))))))))))))))))))

Keep Safe, Okay? Don't be a stranger! TAKE CARE and remember -- WE LOVE YOU!

Jan

[guest, lyndarae]

I guess this is the week for old timers!!!!!!!!!!!!!GO must be trying to tell us something~~~~~~~~~~~~~~Lyndarae

[jumpyowl]

To contribute! I was also notified like Jan and was glad to see the old timers' name again.

I have not been active because I have been condemned to group therapy and also they put me on three potent drugs. The first (Geodon) freaked me out so they could only give me the first pill. The second I vehemently refused due to the severe reaction. The next one I could choose and I chose Topamax. That works for RLS but only in smaller dose (25 mg instead of 100 mg). They wanted me on higher dose.

Then my neurolgist came up with the idea to put me on DepaKote (valproic acid derivative). I will go to the lab tomorrow to give a blood sample to check for liver damage. Not a nice drug. In addition to messing up my digestive system, it also makes me feel sick (malaise) and increases pain.

I was surprised to find out that someone on this board was given Depakote. Unless one is really mentally sick, one should not take it. It is only slightly better than lithium and everyone knows how toxic lithium is.

After this blood test I will stop taking DepaKote, especially since the diagnosis is wrong. And my experiment is getting to be costly.

Would you all believe that I have trouble convincing the doctor about the following simple equation:

DIAGNOSIS ----- TREATMENT (hopefully successful)

MISDIAGNOSIS ------ (possible) MISTREATMENT
I also found that misdiagnosis can be as common as 40% in certain fields

(and possibly higher for diseases like RLS).
___________________________________

I did not do well on neurontin (scrambled brain like yours L.) When I suddenly stopped and switched to Mirapex I had terrific vertigo.


I shall try to visit more opften, especially when I will feel better.

((((0)))))

[becat]

Jumpy,
I'm so glad to hear from you, as you are often apart of my thoughts and prayers.
Your one of the people I list as I look at the moon at night.
I know you are a strong man. Your spirit and strenght.
Smart enough to take on most in any subject that has ever interested you. Wise enough to do what is right for yourself and those you love.
I just wanted you to know that I hope all goes well with the appt. and the medication.
I just wanted you to know that your loved and missed. We'll wait until you feel better for your input around here, but we love hearing from you.
Be well, take good care of yourself.
Hugs to you.

[lyndarae]

I'm with becat JUmpy we miss you tons around here, I will never forget all the time and help you gave to me when my a** was fallen off. And the information you have passed on is worth a million to me and countless others.And all the good times we had trying to figure out each others lingo hehheehehhe. I'm so thrilled that there is a place like this to come to when the pain is taken over my ability to even think just comming here is like comming home to my safe place everyone take care and GOD BLESS~~~~~~~~~~~~~~Lyndarae

[jumpyowl]

Thank you ladies, you make me feel very humble. You are very dear to me.

Made further steps in my quiet battle on the field of mental health. I supplied blood for analysis of valproic acid again and also gycolisation of hemoglobin (trying to convince them I am not diabetic). This is not a battle of Don Quixote de la Mancha against windmills. It actually has deeper roots vis-a-vis to RLS. Now I understand better why so many doctors reach for the pen to describe at least an antidepressant but occasionally they reach into the realm of psychotics.

The diagnostic techniques for the emotional and mental afflictions have been worked out but are seldom used. It is more like shooting from the hip. Misdiagnosis would lead to the Rx of improper medication but that is not news is it? Do we even know what the proper medication is? Definitely trial and error at this stage.

The mechanism of action of these drugs basically is not known. Although, the nerve cell reception sites affected have been worked out for the modern drugs that is about it.

I am going to see this through (I am going to group therapy and see the doctor every two weeks) because I am learning a lot and do not care what they label me. I am also acquiring the knowledge to help my daughter in addition to you folks, which is a nice bonus.

More later!

((((((((((0)))))))))) ((((((((((0)))))))))) ....................

[claradragon]

Wow it is soooooooooooo good to hear from you all feels like old times!

Thanks for the information from all of you.

To be honest I haven't touched the sinemet as I really don't want to go down the road of augmentation and having the brain off again to visit lala land!But I did start the propanadol(beta blockers) and have GREAT sleep with the restoril as well!Seven hours then woke then went back to sleep for another two!Three days and going strong...seems that my system likes not going into overdrive when I sleep.

I should be back online properly(still using a friends) by the end of september so I'll be able to fully catch up with you then till then it's gonna be just quick visiting.

Loads of big hugs and love coming from across the pond to you all!!!

[claradragon]

hey all

good to be back online

going to spend some time catching up with the board for a couple of months by the look of it.glad to see that the community is still stong!

will give you a full update soon

love and hugs from across the pond

claradragon