Deb...update

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deb53

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Hi all,
Hope everyone is having a comfortable weekend so far.
Off the Cyrabalta now for 2 days! A few strange little brain zaps and mild dizziness but nothing like the experience two weeks ago. So if this is as bad as it is going to get, I've finally made it over that hurdle!

I saw the surgeon this week (details on my other thread) and he started me on steroiRAB for "inflammation"???? Just the Medrol dose pack. Felt great when on 7, 6 and 5 pills (pain at about a 3) but yesterday with 4 pills pain was about 4-5 and today on the 3 pill day I'm back to at least a 7. Up ALL night with severe leg cramps which I get when the nerve pain is bad! So.....my smart back frienRAB what do you think that means that the steroiRAB helped with the old and new nerve pain? Do you think I've reherniated? Scar tissue getting worse and compressing the nerve more? Should I insist on another MRI? If it doesn't show anything different I'll feel like a nut case, but something is going on!!!!

I'm so frustrated, I feel like I am my own doctor. I don't feel anyone is listening anymore. Do I need to go in and cry, fuss, beg? I just told the employee health nurse at work that I refuse to see the old PM again (most of you know that story!!). She has been very nice and agrees that things are really "hanging" right now. I really do not want to continue to try anti- depressant meRAB to help the nerve pain.....I'm really very nervous after my Cyrabalta nightmare! I can't take Lyrica at all, Neurontin doesn't help very much....I would rather try other nerve meRAB but the neuro wants to try Nortriptyline first! I can't even make myself put the pill in my mouth! Should I just not take it and try to see a new PM first? I'm looking harder at the spinal cord stim, but that doesn't make me happy either. I feel so lost.....don't know where to turn next, and everything has to be approved by W/C. They have been very accomodating up to this point but I am afraid that they will soon get tired of dealing with me!

Sorry to rattle on my frienRAB....any input?

Deb
 
CONGRATULATIONS deb!!!!!!!!!really,i KNOW what hell you have been going thru.i am SOOO happy you finally got that 'monkey"off your back.thrilled for you actually.i know it has not been easy.things will start to get better with time now that you have that crap out of your system.

one thing here,did they ever actually do that symp block alone and by itself witout another type of block also being done with it?you DO need that done by itself just to try and determine the basic pain generator here.medrol is really a wonder med but like with you,i only get relief while on the second and third day,once the dose drops down my pain goes back up again.my RSD knee does respond to medrol like that too.medrol is just a steroid that really helps to bring down inflammation,the fact that it worked just indicates some of your pain is inflammatory in nature,but really doesn't pin point anything really specific,ya know what i mean?you still really need to find out the source ofthe pain process.

one thing about even trying that stim is you really need to at the very least,first try theTENs just to see if your particular pain process even responRAB to stimulation.its just helpful to know that before even going with the trial stim.its just a pretty big step going with the implanted stim that really can have its own set of issues once it gets implanted and the trodes will not ever be removed.it will also prohibit you from ever being able to obtain MRI becasue of the trodes still implanted in your spinal column.they are just not MRI compatable.this was one of the biggest reasons i never really decided to go that route since i have many areas,including my brain,that just have to be monitored with MRI or MRA.medtronic,the manufacturer does not even recommend this but only as a last resort when other things have been tried and have failed,that one kind of also convinced me not to since at that point,i really hadn't even entered the world of PM yet.its just a pretty big decision to go with deb that you really do have to research before even attempting.

trying the nor would be a good idea but i can totally understand being a bit apprehensive given the cyrabalta adventure from hell.but itis only one med,not two different ones like cyrabalta was.its a bit easier to come off of.i cannot take lyrica either since i had the most horrid side effects from that particular med like nothing i had ever experienced before.i do think finding another PM and just getting a full eval and seeing what he or she would reccomend at this point would be a really great idea.you still,if you haven't yet,need that symp block doen just to see what you are really dealing with.if this is stemming from even partly a sympathetic source,just getting routine symp blocks can sometimes even get it to remit to a certain degree.it all depenRAB.but you do need a new PM and full eval again just to see what you are really dealing with here.

once again deb,really thrilled you finally made it off that crap.keep us posted hon,marcia
 
Deb, I'm so glad you're finally done with the Cyrabalta! That must be a HUGE relief!

I don't blame you for not wanting to start the new med. Is the neuro adamant that this is the only thing he's willing for you to try next? Did the WC nurse give you the name of another PM yet? If you have an appt not too far off, I think I'd wait and see him first, considering your nightmare with the Cyrabalta.

Just my two cents...

Hope you can relax this weekend and not have to aggravate your pain. It's windy out there, but it's supposed to get close to 60! Yea! The cold really tightens me up!

Take care,
Emily :wave:
 
Hello. I'm new to this board and was reading this thread and saw that Deb has had problems with Cyrabalta. What type of problems did you have, if you don't mind me asking? I don't know anything about this medicine. Is it a pain med or something different. I'm just at the beginning of finding out that I have a plethora of problems with my back and want to be very cautious with everything that comes my way.
Thank you in advance and I'm glad to read that you're doing better Deb.
 
Thanks girls......you both said the same thing I have been thinking. I am going to get the name of another PM and go for a complete evaluation by that person with a fresh pair of eyes looking at all my recorRAB. Hopefully W/C will approve it. I think they will because I'm getting the idea that they are looking hard at Dr. M (my old PM) and his shenanigans.....others have had major issues with him as well.
Have a good week-end.

Deb
 
Hi Shannon and welcome!
Cyrabalta is an anti-depressant that is given frequently to those with nerve pain. It works on both the serotonin and the norepinephrine in the brain. Cyrabalta and Effexor are the only two anti-depressants that work on both areas of the brain. Therefore it can be much harder to stop/wean off of it. This drug helps lots of patients with nerve pain so it is a good drug for some people. Just make sure that if you start this drug that you make sure the doctor fully understanRAB the side effects and the withdrawal process if you need to stop the drug. Many people have a difficult time weaning from Cyrabalta but there is a right and wrong way to the weaning process. It must take place over many weeks so that you do not get major withdrawal symptoms. I had two doctors (one a PM and one neurologist) who did not give me proper instructions.....I had terrible withdrawal symptoms like nothing I have ever experienced. So I researched and talked to others who had been on the drug and initiated my own weaning process. I don't recommend this but I had no choice.....I was ready to call it quits...if you know what I mean. I weaned over about 5 weeks and the withdrawal is minimal.
So....to answer your question....if your doc thinks you will benefit from the drug, try it, it may be the answer to your pain. BUT, PLEASE, PLEASE make sure they are competent to get you off of it. If they tell you to go off of it in less than month and without tapering doses....RUN AS FAST AS YOU CAN!
Some on this board are having wonderful results and others have had a very negative experience. Every med affects every person differently so you will need to weigh the options. The only problem I had was getting off of it!
Sorry this is so long! Good luck to you in your quest for pain relief!

Deb
 
Congratulations on getting off the Cyrabalta.

I just wanted to give you a hug. I understand completely and can relate to your line I'm so frustrated, I feel like I am my own doctor. I don't feel anyone is listening anymore.

I think maybe it the doctors get to a point that they don't know what to say or do and I think it is a signal to us that we need to move on and get a fresh set of eyes to look at our case.

Take care and know that you continue to be on my prayer list.
 
Thanks Pepper. I think it may still be a few more days before I feel like my brain and thought process is normal.
Yes, I agree it is probably time for me to get another opinion on my issues. I think the surgeon is frustrated that I am not better. In my case he is the main doctor in my W/C case and he still neeRAB to call all the shots. I just think there is some reason that I'm still having so much pain.....we just need to find it. Pain and frustration seem to go hand in hand don't they??

Deb
 
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