Dilema: More pain or brain fog? Which is worse

Brain and nerves
1

I've had PHN for almost a year now in my back/chest. I've been able to "manage" it with Gab, Aspercreme 4% Lidocaine, Tylenol and a prescription NSAID and Charlie's CBT "it will get better, I won't always feel like this". As I've slowly had improvement I've cut back in the last 7 months from 2700 mg of Gabapentin to 1500 mgs. With the decrease from 1600 to 1500 a good part of my brain fog and processing problems improved. But, I feel like I've got more pain now, which is very discouraging. As a side note, I am dealing with other issues-my husband just had a knee replacement and the month leading up to that uncovered some additional health issues and problems with the Health Care Hell that can happen.

So some of this may be from stress and fatigue, but I don't think so.  So, I guess I'm just looking for some suggestions and support. On a bad day, I think of increasing the Gab to hopefully decrease the pain, but it felt so much better to feel more like myself. Have others had this happen? What would you do?

2

Hi, I had the same Shingles , followed by PHN

and I am having great success with Lyrica 75

I only take one tablet when the pain gets bad and not on a regular basis, as this drug can play with your moods .

Usually I only have one every three days and that keeps me under control.

I have given alcohol away as this did agrevate my condition.

Good luck 

Len

3

Yes,  this is exactly my dilemma at the moment. I am telling myself the brain fog isn't worth it, but when the pain gets bad I question this decision! But usually the next day the pain's better, at least temporarily. I guess I don't have an answer, other than to acknowledge the ups and downs, which you already do! 

4

Hi Babs,  so sorry to hear you are having pain again.  I so hoped you were doing better by backing down on the gabapenten.  I certainly can relate to the brain fog.  Since I scaled back to only 500 mg a day. ( I take 200 am and 300pm). I can’t honestly say my pain is worse. However, I will say that I have noticed that any stress means more pain.  Could it be that with your husbands health problems, that is stressful to you and making your pain flare up?  Are you maybe taking on more household responsibilities.?  I know when I had a knee replacement several years ago, I needed lots of help!  Also I notice that even without stress I have good days and some very bad days.  The good days are usually when I wear a lidocaine patch or even two and am socially active.  I notice bad days more when I am alone all day.  I also notice that since taking less gab, I am no longer forgetting things.  That was scary for awhile when I was on 900 a day.  I certainly wish you more good days than bad.  Hang in there!

5

Stress certainly can exacerbate pain. I notice more when under stress. Also, being alone can result in a perception of more pain, because there are fewer distractions, so the pain takes the forefront. 

First thing I'd do Babs is to give myself lots of credit for decreasing the gab. Feel proud, you deserve it. Then, list all your other coping skills, and maximize them:  Creams/gels, spending time with others, meditation/deep relaxation, distraction of activities that require concentration, thinking tthoughts that are true and helpful, and others. A thought that helps me during exacerbations is "I will get through this."  And, if true, "I've been through worse, this is hard but I can do it."  

Hang in, kiddo. We are with you. 

6

ARGH! I KNEW "dilemma" was spelled wrong, but I thought spell-check would have caught if for me. OK, now I'll reply individually. But you've got to be able to tell I'm doing better today if I care about how I spelled a word, right?

7

Thanks Lenny, Lyrica and Neurontin/Gab are closely related. I know some people had better luck with Lyrica but I would have had to taper off the Gab before I could go to the Lyrica and that wouldn't have worked. I don't drink, so I can't give that up. I think it was stress and fatigue that was making it worse. I am better today, probably for the first time in several weeks.

8

Thanks Rojo, you understand. I know there are ups and downs, but it's been not-so-good for about 3 weeks and I started to really believe I'd have to increase. I thought about it the last 10 days, but last night was the first time I said it out loud to my husband. My doctor's leaving my tapering up to me. So far, the decrease in pain is following the same path on the graph as the decrease in meds. I wondered if I'd reach the point where I was pushing it and I thought maybe this was it. I had such lousy side effects of this drug, but on it and then when it gets worse when I taper that it's very frustrating. But I'm feeling better today (but I also took a 90 minute nap, which I NEVER did before I got sick) which helped. Despite the gloom outside, I'm feeling more optimistic.

9

 "Could it be that with your husbands health problems, that is stressful to you and making your pain flare up?" Is the Pope Catholic?  We've had a really tough month. The pre-op EKG showed Atrial Fibrillation, which surprised and upset us. Despite being in healthcare for 30 years, it's different when it's your husband. Long story short, there were so many mistakes, mis-communications and worse, that the surgery  and post-op these last 5 days were almost a breeze compared to that 4 weeks. We got a lot of it squared away (a new cardiologist, for one, but we declined to file a HIPPA violation form with the feds) but it was really taking a toll on both of us.

Worrying about that then wondering how I'd handle this and help him with my PHN was difficult. I have it in my back/chest so lifting, bending, reaching all increase my pain. I can do a lot of things, but when it's too much, he'd always take over. We knew that would change. Friends offer to help, but what do you say. "Come over and empty the dishwasher? Grab that gallon of milk? Carry the wash up or downstairs for me? Get that new box of cereal off the top shelf in the pantry for me?" Thank God I can come and talk to you and you all realize it's not whining, just saying that it's tough. I'm getting more creative, but as I do usually have good days, I forget, then it's too late. Yesterday was one of the worst days I'd had in a while, but the last 2-3 weeks weren't that good, that's when I worried that I needed more meds.

Ruth, I'm SO relieved that your memory's gotten better. That's one thing that's really scaring me. But, as I mentioned, I fell asleep today after dance (YES, I had a lesson again) and feel better. Just knowing I can have a good day again feels so good!.  Also, hubby's doing really well. He knows how important the exercises are, how good prune juice IS (if you've been on opioids, you get it) and that he doesn't want a blood clot like my sister. Being in healthcare, I know what can go wrong, so it's really scary. I couldn't tell him that, so I'm very relieved. There will still be bumps in the road, but he's thru the worst (we hope). 

10

Thank you Charlie, instead of WWJD, I think WWCD! But it's been so stressful this last month, that I couldn't do the CBT effectively. I tried, but then something else would pop-up with some idiot doctor or nurse. But I DID use it to help my husband that two hours when the spinal wore off and we were waiting for the Vicodin to work. Thank God the social worker (and some others) realized what we were dealing with. I had several meltdowns the first two days. She was able to get an extra day (doncha love that? Two whole nights after a knee replacement...) for him in the hospital. I'm  5'8, but hubby's 6' 5" 280 pounds, there's no WAY I could assist him physically. Then on the morning of discharge, he fainted! Luckily, right next to a chair and the second nurse was there immediately. It DID remind him that he's not always in charge. 

I also had to take a break and leave his PT when they told me I'd have to grab his belt on his back to help steady him. I told him I had to take a walk. He said, "weeping and walking?" Yup, totally overwhelmed. We don't have family in town, and several close friends were either out of town or had their own issues, so yeah, felt isolated too. I cried more in those three days than I had in the last 3 months. But ironically (fortuitously?) during my little walk away from PT I came-upon the EAP counselor in the hospital. So, I knocked on her door and asked if I could talk for a few minutes. She was so sweet and understanding. I also unexpectedly had a friend call, right before we left for the hospital and she was very supportive. So with them and you, I'll hang in there.

So thanks all, I'm better today. I have to remember to try a pain patch vs the cream. They work so well, but I hate to spend the money. This is for a good cause, so I'll do it again.  I do think that in a few weeks I'll get back to decreasing my Gab, but for right now, as I have withdrawal when I do, I'm holding off.

11

Ok. Moving along OK Babs. Do some meditation or deep relaxation and end with the thought "Things are difficult right now, but I'm handling them OK."  Then think about your strength and how you're rising to the occasion. 

12

I wanted to give another update. First thanks again, you got me through a VERY difficult time. Both hubby and I are a lot better. His surgery was a total success and as he improved, so did I. I got more sleep, got more freedom, was able to curtail some of my movements and was just more mindful of being careful. Also believing as you told me, that it was expected to have more problems during this time and that it would get better was a relief. I honestly thought I'd have to increase the meds and still be in more pain.

We also had a long, serious talk about the depression and how the meds affected me. Until then, I don't think he really got it. I think in that stretch my pain, which had generally been a .5 to 2.5 was back to a 4-7, almost continuously, yet I had to plow through it. But, it's over now and I'm back to my normal twinges, discomfort and good stretches.

13

Nice to hear, Babs!  Good job getting through an exacerbation.  You can use these skills for all kinds of problems in the future. 

14

For anyone following this thread, here's an update. BTW, I always wonder how people are doing and personally appreciate these. I learned several things. One, that as I dropped my Gab my brain fog DID get better! At 1500 mgs and up, the fog was worse, at 1500 it seemed a bit better, at 1400 it was noticeably better. I'm at 1100 now and it's like night and day. There are still some issues with my cognitive function, such as simple math but I don't feel as foggy.

Two, there will be good months and bad months as I taper. I've been meaning to look back at this thread for a while as I wanted to know what I felt back in October. Yeah, there was A LOT of stress back then and lack of sleep. Yes, that does make a difference.

Three, even with tapering, this darn drug will still throw things at me. Two months ago, I had a really good week with almost no pain. The month I had several long stretches wtih MORE pain and more emotional issues. So except for the brain fog, that odd pattern of pain/fatigue/emotional issues continues. I put the blame on the meds, but maybe some of it is also the PHN.  Good luck to you all on this odd journey.

15

How are you doing now?  I am thinking of starting on gabapentin for my PHN but I have been scared to take it due to side effects but I am at a point now that I need to do something as my pain is not responding to other treatments like Cymbalta, lidocaine patches, injections, trigger point injections, PT, massage, etc.  My pain management specialist has really been trying to help me but so far, nada.  The gabapentin is the only thing I haven't tried yet.  Were you wanting to be off of it completely or just stay on a low dose?

16

I was to write a long response, but that has to wait for tomorrow. PLEASE  think long and hard before you take it. Consider joining the Facebook group Gabapentin Awareness. I wish I had known what it does to people, if I had I wouldn’t have gone on it. More to come...

17

Hello again. How am I MUCH better! Yes, I still have PHN, but I'd say my pain is about 80% decreased, since last year, in January 2017, and about 40% since four months ago when I last wrote, which was February. I did have a few bad months. February and March were hard, but guess what? It was probably BECAUSE of the gabapentin, not despite it. Gab can cause additional pain as you taper, and I was dropping 100 mg per month, so those pain flares were connected to the gab. There are many theories for it, the drug is trying to get you to take more (possibly but it's not a real, breathing creature), the nerves are so screwed up that as you drop, they flare up more, or who knows?! However, it is real and it happens.

Also the depression and suicidal thoughts got so bad, despite trying to gut it out, I knew I needed help. I'm now seeing a therapist 1-2 times a month and it's helped tremendously. Technically, it's not withdrawal you go thru getting off gab, it's called "discontinuation syndrome", but it's very akin to withdrawal. For me, the last 6 months of getting off gab are worse than the pain of the PHN, so what does it tell you about what gab does to me?

I now have, I hope temporary, short term and long term memory issues, amnesia, cognitive functioning problems, particularly with math or any verbal sequences I hear i.e. "today's specials are XYZ", I can only remember the last words said, the rest is blank. I often can't do basic math, this from someone who did it in her head, all the time. I can't remember if something happened 2 weeks ago or 9 months ago. I have NO memory of certain events. I "found" several items that I had no memory of purchasing or wearing, only several months before.

Thank God, I no longer cry several times a day, but under stress I can still get weepy, VERY embarrassing. Before this, I'd cry maybe once every 4 or 5 years.  Gab kills neurons, stops the pathways in your brain from connecting. That's why you think you don't notice the pain, it stops the brain's functioning at that particular area. Unfortunately, it causes numerous other problems.

Other people get more physical problems such as weakness in their legs, visual problems (oh, I forgot, yes I have intermittent blurred vision), severe insomnia or severe fatigue, extreme anger or in my case, NO feelings, except numb. I still remember the day in February when I laughed out lout at something funny. I realized I hadn't laughed like that in over a year.

Doctors don't really understand the drug, they're working off of incomplete research when it was approved, many years ago. I hate to make light of #metoo, but there's starting to be a movement raising awareness of the problems that gab, benzoids and anti-depressants cause. I had NO idea it could be this bad.  Look up the pages of side effects. Guess what, they stopped the follow-up studies on patients and also used a relatively small sample. It's likely that if you take the drug, you'll have at least 5-10, more likely many more of them. They'll have a possibly long-term effect on your life. If you're on Facebook, consider joining Gabapentin Awareness. You'll hear more there. It's been a tremendous support to me.

I'm truly sorry that you're not getting much relief from your PHN, but the truth is it's VERY difficult to treat. I've been in contact with two researchers who study pain and one specializes in PHN, they're the ones who told me that.  My advice? Be patient, avoid setting it off any worse, use only medication that has minimal side effects, and focus on whatever improvement you have. It's likely you'll get relief, but I don't know how long it will be.

BTW, Cymbalta causes many people problems, particularly when they get off of it, they need to taper slowly. If, IF!!! IF YOU didn't have a problem getting off of it, maybe you won't have a problem with gab. But there are no guarantees. Many people who took only low doses have similar problems to those of us who had higher doses.

I'm not an alarmist, I tend to be skeptical and analytical and I concede that I'm in contact with  mainly who have been harmed by this drug. But I have several friends and a sister who are on it who insist they have no problems with it. But when I talk about my memory issues, or my emotionalism, they laugh and say me too. Why do you think that is?