New residuals?

At least for me is common for new things to occur. Often there stress, lack of rest and other illness that seem to be the trigger for my increased or changed residuals.

New residuals pop up for me every now and again. I thought I had settled into a routine of knowing where the pain and sensations were going to be and then yesterday the side of my head got hot and the heat extended into my ear. Then, of course, it went away as inexplicably as it started. It wasn’t painful – just odd.

I notice new things occassionally…it always freaks me out, thinking oh man what the heck is this?!

I have learned to roll with it and talk myself out of a panic. But it is wierd having something new and different crop up after so much time with the “norm”. I also really enjoy reading about residuals so I know what I may expect…unfrotunately reading about residuals means someone is miserable and has been ill which sucks.

Prayers to all

I haven’t posted in awhile and was actually just coming on the forum today to ask about new residuals, so I’ll post my book here.

My fiance Ben had a very severe case of GBS just over two years ago that paralyzed him from head-to-toe. We thought we had hit the jackpot because he was able to walk again after two weeks of therapy and didn’t have much fatigue or many other residuals for about a year-and-a-half. He never even got a cold during that time. Then last October, he had his first sign that anything was ever wrong–a muscle cramp on his left thigh that left him unable to move for two minutes. Since then, it’s been downhill ever since. He was also diagnosed with Carpal Tunnel around that time, but he had one round of cortizone shots in both wrists and was fine after that.

Then, Ben was hospitalized for three days in November because he had a case of the common cold that left him looking like he had Parkinson’s with shaky, out of control nerves that wouldn’t give him a break. His doctor prescribed Quinine, which did the trick. All MRIs, CT-Scans, Ultrasounds came back normal.

About a week-and-a-half after that, he started complaining of dizziness and that he just didn’t feel right. We went to visit another neuro for another opinion, and he diagnosed Ben with migraines, despite that Ben never complained of having headaches. He prescribed Verapamil, and that took care of the dizziness, so we went with it.

So, another six months of thinking Ben had got off scotch free, with the expected fatigue now creeping in, and Ben having to sleep more frequently . . .

Then, about three weeks ago, Ben started complaining of dizziness, along with nausea and a “thick mucousy throat.” I can’t understand what he means by this, but he says his mucous has the same disgusting thickness and taste as it did while he was on the ventilator. These symptoms seem to come on mostly when he’s stressed out and/or he’s trying to do more than his body can handle.

Today, Ben is experiencing these symptoms yet again. He’s had a very active last few days because he’s still in denial about his limitations and continues to force his body to do things it just can’t do anymore. On top of it all, he got a really bad sunburn yesterday, and he’s in a lot of pain from that, including neurological pain. I’ve been telling him not to overdo it for the last two years. At first he used to listen to me, but now I’m just a nag. So, now I guess I’d like to find out if anyone else has had residuals similar to Ben’s, what you do for them, and if they’ll ever go away so we can live a normal life again.

Thanks for reading this and for any advice you can offer!

Shannon

Hi Shannon,

I feel for your position. It’s so hard to be the caretaker of someone who goes through such horrible things, yet continues to overdo. He just doesn’t want to be sick and doesn’t want to admit he is I guess. My husband had GBS in April 2006 and just recently experienced residuals related to overdoing things. He is pretty much a work-a-holic. The advice on this forum was rest rest and more rest. You know what? It worked like a charm! That even surprised HIM! Sometimes it’s even harder for him to rest than it is for him to work… so he certainly would understand Ben. Resting is worth it though. He is the only one that can do it.

Thanks cinnamon,

Ben was February 2005. He always feels better after he rests, but he’s constantly telling me that he’s still young and wants to do things he used to be able to do. LOL I’ve never had GBS, but don’t I wish I could do some of the things I used to do too!

Shannon

I know exactly how you guys feel. I have taken some slack on the forum for not making Kevie rest (since I am the adult) It really is easier said than done. Trying to tell a male he has to do something you say is bad enough, but telling him he has to rest because he has limitations is I can imagine, a real mental blow. Trying to tell a ten year old he can’t play with his friends anymore is gut wrenchingly painful. Although I have not made Kevie rest these past 10 days or so, and allowed him to play outside like a normal ten year old, I do not feel guilty, even if he has a set back. I believe that his mental status is just as important as his physical status, and I have to tell you, these past 10 days are the happiest days he has had since this all started. Kevin had been spiraling downward into a depression. He went from being the happy, funny, popular, little boy that everyone wanted to play with to the poor pittied boy. I realize he is not normal now, but when he is able I want to let him try to be. We are relatively new at this, it has only been 7 months and we have had a lot to adjust to. I suspect that your fine men as well as my little man will have to take a few kicks in the pants from residuals all on their own and have to figure out their limitations on their own. (Once they admit it, then we can tell them I told you so lol) Being that Kevin is only ten, I realize that I will have to take a more assertive approach in helping him figure out his limitations, but right now, I just do not want him mentally stressed as well. I hope that we the caregivers will have the stregnth and capacity to find a happy medium in helping our guys to learn how to take it easy in a way that they will accept. Have a great day! Dawn

Dawn,

Well put! I guess the important thing is that we don’t feel guilty because it’s not our fault they don’t listen. Oh yeah, and also try not to rub it in until they start to feel better! :p

Shannon

Shannon

I also get a wierd feeling in my throat! I wasnt on a vent, but every so often my neck and throat will feel tight and as if I have to clear it a lot. Since it is numb at that time, I dont know if there is really anything there to clear or whatever. It is irritating, scary, and frustrating. Sometimes I will wake myself up during the night clearing my throat…it feels as if there is a large amount of mucus (sorry that is so gross) and I feel as if I never quite get rid of it. After the numbness stops, I feel fine. It always scares me. Could this be what he is feeling?

I sure hope he continues to get better. I am almost a year into this and am not ready to give up hope that I will recover even more. I deal with fatigue and twitches and do also feel as if I need to sleep more than I used to. The other night I fell asleep at 6 and woke up at 5 am and felt as if I could sleep the rest of the day away but had too much to get done. Naps help although it is hard not to feel guilty about being so “lazy”.

Forgot to add…I also get dizzy spells and it feels like my head is empty and swishing around. Like it isnt a part of hte rest of me. Does your sweetie’s headaches start at the base of his skull and go up and over the thop of his head?

Thank you so much for mentioning the cough and throat problems. This also started for me a few weeks ago. Hubby says I cough alot during the night. I am at the one year anniversary of dx. I have IVIG every two months or so. I had to switch Neuro. and he is going the steroid route. He gives me a shot of cortisone and am taking predisone every other day Now last week he started me on Cellcept. I am bloating up, very fuzzy in the head and when trying to stand or walk a little with my walker, just dont feel right. I also am on Lyrica and Cymbalta.
This morning I decided to give it up and quit all the 13 drugs I take each day.
The Lyrica and Cellcept are so expensive I am afraid I will go over my supplement drug plan soon. I have shown no improvement since Nov. 06 and reallly feel like giving up and just using my power chair and forget all the painful walking. Dear Hubby talked me back into my meds my noontime, but I am feeling awfully low. I will be 68 in July, so guess my age doesnt help with mylein healing. Ankles and drop foot cause alot of discomfort. Sorry for rambling and complaining, just need a pep-me-up. Thanks for listening.
Regina

Hi Nag..Shan!:D Ben needs to either find out the hard way or do it the easy way and listen to you! He needs to REST and not push beyond his limits. somedays he might feel better, don’t matter until he gets those days continuiously for at min of 1 week. if he has a week of good days, he can slowly add on to his limits. the more he adds, the longer he needs to rest to recover, then he can keep adding on. if he won’t listen to his Nag, Sweetheart, then he chooses to go the hard way about things and he will in turn pay in the long run. i’m the same way, i admit it! but i have learned from my past mistakes! i’m the Nag and the receiver!!!:D :rolleyes: as far as the mucous goes, i have that thick, gross stuff still, have had it for 1 1/2 years. its just something i have learned to live with, not sure why, but i have. Please give Ben a Big Hug for me and here’s one for You too!!

Regina, Don’t apologize for the way you are feeling. You have the right to vent! Please don’t go off your meds cold turkey, you’ll have even more pain and bigger problems if you do that. Maybe you can voice your concerns to your dr and ask if there is maybe something else you can use to control the pain that is less expensive or call about free or reduced meds. There might one medication that you can take that will do the job of 2 other meds that you are now taking, in the end maybe saving you some money and number of meds you have to take. You really need to talk to your dr about that kind of stuff. Just don’t stop taking your medications without your drs permission. I wouldn’t want you to develope more severe problems. Take care. You have a Wonderful Hubby, He obviously loves you bunches!:)

Thanks for the hugs, Cher! And thank you ladies for your responses! Every time I feel like we’re alone in this, I know I can come on here, and you all will help me feel better! We’ve had a rough few weeks of it, but Ben is feeling better tonight. I’m home for a four-day weekend, so I’ll make sure he’s resting for most of it. LOL When I just told him he needed to rest, he had a few words of his own to say about that, so it doesn’t look like he’s ready to listen! Oh well, I have my ways, so I can keep him lying down when I’m home. I’ll just pretend like I don’t feel well. It’s always worked in the past. :p

Shannon,

My Brandy is almost 8 years post GBS and she had a remarkable recovery. Stress & fatigue still seem to be her worst enemy. She graduated from MSU on May 5, 2007 and began her internship at a local hospital on May 7. She is interning 40 hours a week and trying to work as much as possible. She managed until this past Monday then the migraines began again, well two days of bed rest and complete darkness the migraines subsided and she seems to be on the mend. I feel your pain about being a nag just ask my 22 year old college graduate (LOL).
Tell that man of yours, “listen to his body, pay attention to the signs” and then slow down.

Take care!

~Maggie~

Hi Everyone, New residuals? Yes, weird twitches and pains – quite frequently. However, I wonder how much of what we are feeling also has to do with getting older? Taking it easy and resting when needed is so important!

Regina – Be careful stopping meds especially the Cymbalta. You have to wean down for weeks to avoid major side effects.

Maggie, congrats to your daughter! Jerimy has told me a lot about you guys, so I’m really happy to hear she’s doing so well! As for the migraines, Ben went on Verapamil for his last November, and it seems to work. I’m still skeptical about what he has being called “migraines,” but when he doesn’t take the Verapamil, they seem to be worse.

Chrissy, I’ve heard that people weaken with age anyway, but Ben is only 39, and Brandy is just a baby. I’m afraid Ben will feel worse as he ages, but I don’t think that’s what this is. Maybe I’m just in denial, but if he’s this bad now, then, the older he gets, it’s all downhill from here. I can’t let myself think that way because his residuals effect me too! :p

FOM, I re-read yourpost, and you and Ben seem to have similar residuals. Would you mind letting me know what meds you’re on? Ben is currently on: Neurontin, Verapamil (migraines/dizziness), Provigil (energy), Vicodin (for having three bad discs in his back–he’s hoping to get his morphine pump removed this Fall) and Quinine for shaky nerves. I hate it that he’s on all these meds, but you can really tell how much he needs them when he misses a day of taking something.

Have a great Saturday, everybody!

Shan