TRYING TO FIND THE RIGHT MEDICINE COMBINATION IS EXHAUSTING AND LEAVES ME SICK, WEAK, AND DIZZY. I AM UNABLE SOME DAYS TO EVEN TAKE A BATH. THIS IS SO UNLIKE ME IN REAL LIFE. I USED TO BE FUN LOVING AND CONFIDENT. NOW I AM AFRAID TO DRIVE BECAUSE I AM DIZZY. EVEN IF THE PAIN GETS BETTER FOR A FEW MINUTES IT COMES RIGHT BACK WITH A VENGENCE. HOW DO YOU DEAL WITH THIS AND JUST KEEP GOING? SOME DAYS I THINK MY FAMILY WOULD BE SO MUCH BETTER OFF WITHOUT ME JUST DRAGGING THEM DOWN. HOW DO YOU FIGHT THOSE THOUGHTS WHEN THEY ARE THE SIDE EFFECT OF EVERY MED I TAKE? NEED HELP AND PRAYER. THANK YALL.
I too am in agreement. I just had to change medication yesterday. After being allergic to Tegretol, using another medication which didn't work, now I am Neurontin. So far, good. We just have to continue to stay positive, pray and make the best of it. I wish you much love and success in finding the right medication. I felt just like you do on yesterday. I was so down and depressed that I really didn't care what happened. Today is better and I am hoping for better days. Stay encouraged.
I share your frustrations. Hang in there. It is a journey that takes more patience than I ever thought I had. I’m now on my fifth combination of drugs. I recommended the latest combo to my neurologist after reading “Striking Back! the Trigeminal Neuralgia Handbook”. I’ve now had 5 almost-pain free days, which is a record for me in the 7 months I have had with this dreadful condition. With a higher dose of any single medication I always had zombie-like side-effects. After reading that Trileptal would be more effective for my TN-1 stabbing pains and Gabepentin would be more effective for my TN-2 persistent pain, I recommended trying a lower dose of both at the same time. By lower, I mean lower than when I was on higher doses of them individually. My thought was that maybe I would have lower side effects overall. So far the pain is much better and the side effects are somewhat lower. I’m hoping that my body adjusts to them so that I could get back to some IT consulting and playing in some softball tournaments…and feel safe driving other than locally at 30 MPH speeds. Having my grown children tell me that I seem like I am drunk all the time…and not being able to bring in some money…frustrates the heck out of me. Feel free to shoot me a message if I can help you on the bad days. It’s hard not to be depressed when it is kicking our butts.
Ugh, I hear you…just started the Neurontin …I’m already on 1600 mg Tegretol . Had to have vng/eng tests this morning at hospital to see if my dizziness/ imbalance is side effect or inner ear problem…needless to say I’m dizzy from that, and feeling drugged,Zombie, lethargic etc etc.
It’s super frustrating!
Instead of crying …I chose to find some laughter and went to damnyouautcorrect.com and laughed so hard…I try, somedays I just pull the blankets over my head and allow myself some woe is me time, but mostly I HOPE that better days are ahead…
((((( hugs ))))) to all, Mimi
Oh Yaya...you are SO not alone! We all have the same thoughts or something similar; the med adjustment period is horrible! ...been on this roller coaster for a little over a year now and have found SO much information / help / support from this site than anywhere else; and my family are fantastic, but just don't 'really' get it all the time.
My doc also has been 'jiggin' with my meds this week; starting on some other strong stuff and am already on Trileptal 900mg daily along with Tegretol up to 400mg as needed; now have Clonazepam .5mg daily to add to the mix...
I think it must the the TIME OF YEAR that we all need adjustments - the weather is getting cooler, the atmospheric pressure is changing and our lives are FULL of stress.
Hon, take a breath - you are not alone! We are here to support you and will listen to you no matter what!
Best wishes,
Cris
- Thank you all for your kind words of encouragement. I hate all of yall are going thru the same thing but it so helps to know that someone knows how you feel. Thank you again for being here. God Bless.
I feel your pain and am on the same roller coaster I just recently tried tegretol and had horrible side effects..I am now on neurotin and it is sorta kinda working along with percocet...I also am sick of medication dictating my life and what I can do on a daily basis as far as driving goes I also wish and dream that I could go back to my old life I would love to walk around walmart or target and get out of the house. All I can offer you is that some days are better than others and that we just have to keep being there for each other and believe that it is going to get better!! Your family is most definitely not better off without you :) I pray and hope for better days ahead for you :)
Besides nausea, disorientation, the nightmares, cussing like a sailor at work, waking up in August and thinking it's Feb...med changes have given me and those around me some comic relief. Since I've been at my current employer for the past year, I've gone through some bizarre and hilarious behavior. I'm lucky to be able to laugh at myself. My depth perception was off one day, and moving down the hall I gained too much momentum and head-dove right into the wall. I've said some crazy things, worn stuff I wouldn't have worn in the third grade, and done some goofy stunts. I wonder how I got to and from work safely on those days. I get heavy props at the Walgreens...my pharmacist thinks I'm the Keith Richards of El Paso. He doesn't understand how I can still walk in heels and didn't make fun of me when I tried to pay with my laundry card.
I think I've found the med that works for me, it's effexor at 225mg. I make a lot fewer mistakes at work and don't fall asleep in the restroom anymore. I've lost a lot from TN. Just about everything but my sense of humor. And depending on how you see things, it's still possible to find things to laugh about and enjoy. Unless it's windy, then nothing's funny.
Colleen - wish I knew you did comedy sooner! Yaya - have you seen a pain management specialist?
Sometimes in addition to GP or neuro - it's a good choice if you are not able to have or not ready for surgery
We're virtually here 24/7 - so reach out when you need to!!!!
SOMEWHERE OUT OF THE BOTTOM OF A BARREL THEY DRUG UP KEPPRA FOR ME AND COMBINED IT WITH LYRICA. I ACT LIKE ONE OF THE THREE STOOGES MOST OF THE TIME. DO YALL HAVE TROUBLE REMEMBERING STUFF? mY SWEET HUSBAND TELLS ME THINGS i HAVE NO RECOLLECTION OF! i NEED A NANNY CAM!
My short term memory is terrible. I often start out saying “Stop me if we already talked about this.” It’s embarrassing. I have been blessed with a good sense of humor, so I’m good about making a joke out of it. I just wish I could get rid of the zombie side effects so that I could look for a new consulting gig. That would be impossible now being that complex thinking is impossible…along with the memory issues. We all struggle with finding an acceptable treatment plan. I’m passing time with my neurologist playing with med combos while awaiting my Mayo visit on Halloween. I think I’ll dress up as a zombie! Ha, ha.
I changed medications multiple times due to all the crappy side effects that either left me stupid, dizzy or a zombie. I have found a very weird combination now that at least I can think and drive occasionally, so thats a plus. I cant work on these drugs because they are narcotics and in my line of work I drive all day, so right now I am waiting for my scheduled MVD surgery and hoping that does the trick. Because I drive for a living, a lot of drugs that could possibly help are being ruled out, so I am a hard case. I think with all the drug changes I have lost multiple IQ points. I hope you find a combo that works for you
Wendy
you could dress up like that painting the scream as well, or perhaps a lightining bolt, lol
Wendy
Brad said:
My short term memory is terrible. I often start out saying "Stop me if we already talked about this." It's embarrassing. I have been blessed with a good sense of humor, so I'm good about making a joke out of it. I just wish I could get rid of the zombie side effects so that I could look for a new consulting gig. That would be impossible now being that complex thinking is impossible...along with the memory issues. We all struggle with finding an acceptable treatment plan. I'm passing time with my neurologist playing with med combos while awaiting my Mayo visit on Halloween. I think I'll dress up as a zombie! Ha, ha.
Crashgirl, when is your MVD? I wish you all the best with it and look forward to hearing about it. Hopefully you will be one who finds complete relief for many years to come! Good luck!
Yes, been there and agree that a good sense of humor and a lot of humility are key. I have been willing to try anything.
What makes me angry is when the drs. minimize the side effects -- "your memory seems fine to me!" "no one else has trouble sleeping!" The only thing they seem to really care about is whether I gain weight (and I'm actually still not overweight, so why that's got such importance is not coming from me.) I'm getting mad just thinking about it.
I finally said no more changes because it was just getting ridiculous. With every change I would completely fall apart for months (the memory loss, the dizziness, the vomiting, etc.) They didn't seem to really even believe that the new things would work. I feel much better without that craziness going on. Maybe I'll be ready to try again soon.
Brad said:
My short term memory is terrible. I often start out saying "Stop me if we already talked about this." It's embarrassing. I have been blessed with a good sense of humor, so I'm good about making a joke out of it. I just wish I could get rid of the zombie side effects so that I could look for a new consulting gig. That would be impossible now being that complex thinking is impossible...along with the memory issues. We all struggle with finding an acceptable treatment plan. I'm passing time with my neurologist playing with med combos while awaiting my Mayo visit on Halloween. I think I'll dress up as a zombie! Ha, ha.
Just got back from Mayo Clinic in Rochester (Aug 2013) where I consulted with both a neurologist and neurosurgeon. Had been in such pain for weeks after being on heavy meds with no relief that I would have welcomed the guillotine if they suggested it. They did NOT suggest surgery (are in fact reluctant to suggest it until all possible pharmaceutical options have failed). They suggested several pharma options that my local neurologist had not considered and which we are now exploring. MAYO was wonderful and is "in network" for my insurance (thanks be to God for that one!). If you can get there, GO! You can refer yourself, just go to their website and send them an email. They called me back within a day and were able to work me in within two weeks. They sent my local neurologist all the info from my visit, she already had it in hand by my next appointment. The surgical options they recommended for me, in order of preference, to my surprise, were: 1st balloon decompression (a long needle procedure), 2nd MVD, and 3rd gamma knife radiation. They discussed with me why they chose this order, and the pros and cons of all the various procedures currently available. Interestingly one of the meds they did NOT recommend was Lyrica (a med which scared me already because of its reputation for side effects of suicide and stroke). They didn't "Dis" Lyrica, they just didn't mention it, but they mentioned most of the others which I had heard of. When discussing the various procedural / surgical options they did mention the various dangers (death, paralysis, infections, deafness, etc) but the most depressing was that the results are typically not permanent and often have to be re-done or supplemented by meds, which is the reason most people have them done in the first place, in addition to hoping to end the pain. Anyway, my present meds are 60mg Cymbalta 2xday + 100mg topamirate 4xday + 100 mg Lamictal 2xday. Although I am greatly improved, I am still getting breakthrough pain, so we will be titrating up the Lamictal. And I now understand why Topamax is sometimes (informally) called Dopamax and Stupemax - my short term memory is shot, my ability to think logically is seriously impaired, and my husband is having a very hard time becoming accustomed to being married to an intellectually challenged woman. As a consequence, I often have a hard time finding my sense of humor (seriously - sometimes I just do not get jokes, especially puns and plays on words). But this is so much better than not being able to even blink my eyes, move my head, etc (not to mention being unable to speak, chew, or swallow) without excruciating pain. Good luck to all of you who are suffering. I know there is not much consolation to know that you are not alone in your suffering, but it is helpful to gather all the information that others have learned the hard way - you never know what tiny clue will help relieve some pain. OH - the big tip I forgot to pass along and that I have not heard or read anywhere else, even though it certainly makes so much common sense: eliminate all caffeine from your diet - it is a CNS stimulant so it works against your anti-convulsant meds (which suppress the CNS)! This has made a big difference to me when I have been just on the edge of the effective dose.
Thank you for letting us know about your visit. Any information is important to us all. I knew about the surgery but I'm planning on doing it anyway after I've tried more meds. I willing to take the risk of surgery even if it only lasts awhile. The caffeine was something I haven't heard before. It makes sense. Thank you.
Hello Tkal: The docs at Mayo told me that about 60% of the TN sufferers do eventually require surgery either because the meds are not able to control their pain or because the side-effects of the meds become intolerable. So I anticipate that surgery is in my future too, considering the way things are going. They just advised to put it off as long as I possibly could.
I was amazed that I had never read about the caffeine avoidance; so was my local neurologist.
It seems like it would also be very important for those who take the anti-convulsants for seizure disorders.
Good luck with your surgery.