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scottm

Another swing and a miss

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The cymbalta trial is now officially over for me. While it did have some effect, like all the other antidepressent, anticonvulsant, etc. drug it put me into a fog that left me struggling to wake up and stay awake with worse memory. The withdrawal from cymbalta was the worst, hot/cold flashes, sweats, thunderclaps in my brain. Lasted several weeks and is still around a little. One advantage of coming off that is that I can pee again. It was a struggle.

 

Neuro wants to move to effexor to trial. Side effect profile is similar but you never know. Not looking forward to going back down the rabbit hole and making my cognitive deficits worse but doc says that after this he is out of options. So soon I have to decide which is more important, thinking or some minimal level of comfort. I already told him that making my cognitive deficits worse was not something I would consider a win.

 

He's tried his best but as we've discovered some people do not respond well. Last visit he said that some nontrivial number of patients do not respond to treatment for CPS in a meaningful fashion and I may end up in the population of people who classify as being refractory, essentially untreatable by any conventional treatment.

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I'm sorry, I know it can be such a struggle when you do everything "THEY" tell you to do and you don't see much in the way of benefit, and even more in deficit. Ever tried CBD oil?  I'm sorta unconventional so that is what I am trying as a first line of "drug" to deal with sleep issues, depression but mostly ANXIETY, and the weirdness of not feeling s that has become worse after the stroke.  Its very gentle, and I have had no adverse affects, but I know everyone is different.  I haven't spoken to a neuro about it, but did cover it with my GP, who said to give it a try.  When I first tried it I started on a very low dose and found no effect, but by  upping the mg that I take to the nerve pain and chemo does, it helps so much with the nausea that I get with the dizziness, the anxiety and sleep.  I know not everyone is the same, but don't give up!

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Scott

I am sorry but don't give up hope you never know.

Trina

My GP told me don't waste your time or money on CBD oil, that there is not enough information or clinical studies done on its use, he said it best 

"We have 50-60 years worth of clinical studies on Tobacco and Alcohol use yet we have maybe 5 years give or take a few worth on the use of CBD oil, he said it will take another 10-15 years to get a firm grasp on weather it works or not " and my Neurologist told me point blank to stay clear, he told me that your blood pressure can go up from 20% to 100% of your normal blood pressure and that could trigger another stroke and after 30 min or so it could or should start to go down. 

I know people that use CBD oil are going to say i'm full of it.................maybe I am but who do you trust, non educated people, sales people trying to sell there product or your Neurologist that is a Dr, has at least 10 + years of experience, is licensed in the state he practices in and possibly just saved your life ???????.

I don't know about you but i'm putting my money on the Neurologist.

 

I went to a Chiropractor last year, a friend of mine in Chicago swore by his results and his Chiropractor recommended one in Montclair, Ca 

The Chiropractor swore he could cure my dizziness and when I told my GP Dr and my PT Dr about what he said and what he was prepossessing to do they both told me to stay clear, i'm, glad I listened to them because I have read about things that have lead up to suffering a stroke after a visit to a Chiropractor.

 

Hope you get a handle on your CPS Scott 

Ed

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Hi Scott,

 

As with anything, CBD works for some, but not all.  My Mom loves it - it doesn't do a thing for me.

 

I hope you find relief!

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I'm not a CBD fan, seems like they are pushing it as a cure all for everything with no real science behind it. 

 

BTW, Florida is starting to bust doctors for the same things they were doing in the pill mill days but with medical marijuana, nonexistent exams, I need the card because I have to take a drug test, no physician present, etc.. My college days made it clear to me that pain and marijuana never even held hands, let alone had a relationship. 🙂

 

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Scott

You spot on reading between the lines, kinda like the old Elixir / Snake oil thing, taking this cures sunburns, hang overs, dry skin, oily hair, zits, freckles and the list goes on and on. 

I hope you find something that works.........:wink: it has to be out there.

 

Susan.........thanks for your input and honesty

 

Ed  

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On 12/1/2018 at 12:35 PM, scottm said:

The withdrawal from cymbalta was the worst, hot/cold flashes, sweats, thunderclaps in my brain. Lasted several weeks and is still around a little.

Did you gradually and very slowly decrease the medication?  There is a protocol you must follow for stopping medication.  There is no withdrawal when stopping correctly.  You should always ask your pharmacist what that is. 

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Man Scott I feel for you. I have been through this type of ringer. I don't have CPS but psychiatric issues have and still do put me through the medication merry go round. Best of wishes.

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It was as gradual a taper as can be done based on available dosages. Mostly past it now but not looking forward to more of the same with last resort medication. We wait and see now. I'm not in a hurry to be put in the intractable category which is sort of the discard heap for failed patients.

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Hello from the HEAP!😎

 

I am on last day of the spinal stim trial.

It does not help enough to stop the meds but it does take up the slack. It helps.

They say the perm one will help a bit more.They hope. I hope.

 

I doubt CBD but never tried it.

 

There is research out there about CPS treatments and it depends what you feel is right for you and it helps to have a team of pain management neurologists. Pure specialists. They know more than the average Joe neurologist if that can be true.

 

I feel your pain or something like it.

 

Good luck my strong friend

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