Depression with PHN?
Posted , 28 users are following.
Anyone have depression with PHN? I'm a retired psychologist with 26 years of PHN in right eye, forehead and scalp. I have nothing to gain [not looking for patients, I'm retired after 40 years practice]. I have learned very helpful ways to manage depression and PHN, and have worked with many patients with chronic pain and depression. If interested, let me know. I hope I can point some people with this difficult condition in a helpful direction that will improve their lives.
1 like, 251 replies
Michywichy charlie58834
Posted
Im.new to this group. Im.on my 7th week post shingles put on neurontin for nerve pain after 4th week. Have lost lots of hair. It made me feel sick, depressed and exhausted. I now feel an emotional wreck. Ive been signed off work 2 months as had shingles on left side of scalp, ear, neck, face with rash. Rash gone, scabs still on scalp. Continued nerve pain, tenderness on scalp, sensitivity where shingles on scalp, stiff neck, not fully fit returning to work September but anxious about returning to work. Doc suggested part time hours in a month, normally do 37.5hrs per week. Worried if cant cope wont be able to pay bills. Lots of anxiety. Not sure if this feeling is the pills as now not taking them after a month or me after depressed after shingles as taking such a slow time to recover. Never felt so ill and still not 100% better.
tiffany60896 Michywichy
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babs99203 Michywichy
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Dear Michywichy, if you're still feeling like this, I'm sorry to say that you may have a long recovery. How long? Who knows. Yes, Gab/Neurontin can cause the hair loss (luckily, I seemed to be the only who noticed it on me), along with depression and anxiety, along with a lot of other unpleasant side effect. I'm 10 months out from my shingles and still have an uneven recovery. Prepare yourself to accept small, slow improvements. "I couldn't do XYZ two weeks ago, now I can." "I had less pain today that last week" etc. Keep coming here if it helps. Tiffany gave you good advice. You have to take it slow and rest as much as you can. If you push yourself too hard, you'll delay your recovery. Seriously consider part-time. I only worked part time but had to not do even that for 2 months. Take care.
charlie58834 Michywichy
Posted
Hi Michywichy,
Welcome to our forum. You're early in the PHN trajectory, and it may be helpful to know that this is probably the worst time for you. In other words, once you accept this is where you are, you can begin to get a handle on some ways to manage it. There really are some good management methods.
It's appropriate to try different things to see what works best for you with a minimum of side effects, or no side effects if possible. Lots of people on this site complain about Lyrica/gabapentin/neurontin, etc., saying side effects bother them a lot. I opted early on, in my first few months, to not take those. I'm not against them, I think they help some folks a lot. I just decided to go for methods with less side effect potential. I tried topical creams, a lot of them, and found that two worked to dampen the pain/itching a fair amount: Aspercreme and lidocaine gel. Both are generally available in drug stores. Keep in mind that nothing will get rid of the pain totally!!! If you keep looking for that, you'll discard things that help partially, and that's a mistake.
Tiffany, I'm not sure where you get your impression that shingles and PHN affect the brain and the entire nervous system. While our reaction to long term pain can certainly do that, the shingles and PHN themselves are limited to the sensory nerves. I just don't want people here thinking that they have some type of brain infection or something else scary like that. Once the shingles goes away, the virus is in remission and is no longer causing pain. The pain then comes from damage to the sensory nerves.
So, Michywichy, you do sound like you're having a really hard time, both with pain and the emotional fallout that comes with it. I did too, early on. Along with searching for topical creams that help decrease the pain, It was very helpful for me to see a therapist and to start antidepressant medication. It's something to consider. Doesn't mean you're crazy, just means you're having a normal response to a very difficult challenge in your life.
For more detailed info on meds and cognitive behavior therapy [CBT], please see my note to Ruth 20 days ago. I'm also participating in another forum on CBT on this site, and that might be helpful too.
Hope this helps you out, M!
Hinter Michywichy
Posted
Michywichy, Welcome. I have had PHN for three years now. It is very discouraging until you get a routine and meds all tried out and finding the best mix that works for you. As far as going back to work, Charlie is right, things that take your mind off the pain are a big help, however, don't over do it, take frequent breaks, as the pain may be worse if you have pushed yourself too hard. I am retired, but have a big place with a lot of upkeep and many projects I'm working on. I take 4 or 5 half hour breaks a day!
I could push myself harder, but I may end up being useless the next day if I don't. Watch for little improvements, and don't be afraid to try various things to relive the pain (and the itching some have reported). I'm still trying new things, even after having it this long.
tiffany60896 charlie58834
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Hi Charlie58,
I feel for you because I know exactly what you're going through. I am nine months from the day I got shingles. I got PHN and have been out of work six months because I have felt so sick even after the shingles rash left long ago. Doctors rarely mention the long recuperative period of this disease. Like you, I have never been so ill. The worst part is that shingles and PHN effect the brain and the entire nervous system so most of us get anxiety disorders along with the nerve pain. My advice is to rest, sleep, nurture yourself and make recovery your main priority. I am still not functioning normally after all these months BUT I am slowly feeling better. My nerve pain is lessening. I am slowly starting to get back a bit of energy. I still have some weird health symptoms but am learning cope. Don't power through this illness as we say here on the forum. Sleep as much as you can. Eat only healthy food and try to practice relaxation techniques or meditation. Like you, I have to go back to work. I will begin my job again August 28 and like you I am worried that I will not have the strength to handle it. I don't know how I will have the stamina to work again but I have to try. I will take a lot of breaks and try to conserve my energy. I hope you can find ways to rest during your time at work. I wish you luck. We both will need it!!
tiffany60896 charlie58834
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tiffany60896 charlie58834
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Hi Charlie,
I'm sorry if my last post was unclear. I haven't slept well in a couple of days and probably didn't write what I meant. I am well aware that shingles is not a brain disease. I meant that like many terrible illnesses it "affects" the brain/mind in the sense that those who have shingles and PHN often become stressed and depressed because of long term pain and disability. I was referring to the psychological effect that shingles and nerve pain has on the body. When I mentioned the nerves I only meant that when nerves are damaged they seemingly have a tremendously destructive effect on the whole body, more so certainly, than any sickness I have ever experienced. That's all I was trying to say. You are the psychologist as well as somewhat of an expert in the area of the effects
of shingles and how it damages patients psychologically. I'm just a woman still suffering from the after effects of horrible shingles and only wish to share my experiences and what I have discovered on my way to recovery.
charlie58834 tiffany60896
Posted
Michywichy, in response to your wondering if going to part time work is advisable, I think it has to be an individual decision. Some folks find that helpful. I did not take time off, and was back to work as soon as the shingles scabs on my face were gone. That was a really rough time for me, but I think being at work and having something other than pain and itching to focus my thoughts on was really helpful. I remember that when I was working intensely, afterward I realized I did not experience any pain during that time. I was distracted by the work. While taking time off can be helpful, and at times may be necessary, I think it can add to the pain problem. When people are alone and unoccupied, they have time to focus more on the pain, and that always increases the perception of it. If you do take time off, try to get out and do things as much as possible. This helps with preventing muscular deconditioning, and it also helps to distract us from the problem.
sheila48912 charlie58834
Posted
Charlie, we have exchanged information in the past but wanted to know what your thoughts on Cymbalta are? My doctor wants me to take it but I'm reluctant to add yet another drug to my regime. I'm eight years in but haven't lost hope yet, however quality-of-life is more than diminished. 😢
charlie58834 sheila48912
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Hi Sheila, nice to hear from you again. I've seen lots of people experience good results with Cymbalta. It's an excellent antidepressant that also has some pain-dampening effect with neuropathic pain. I was on Cymbalta a few years ago and it worked well. I thought it made my pain slightly less sharp, and it did work well for mood. Side effects: most people experience few or no side effects. It does have one common sexual side effect, like all the SSRI antidepressants, "delayed climax." Some folks find it difficult to reach climax. Wellbutrin does not show this side effect, and if it's a problem, people often switch to it.
Starting dosage age is usually 30 mg/day for a week, then up to 60 mg. Most people get a good effect with 60 mg. Like all antidepressants Cymbalta takes time to "kick in." Many people begin to notice a decrease in sadness, crying, fatigue, irritability etc in10 days or so on 60 mg, but it sometimes takes a few weeks at 60 to get a good effect. It's taken once per day, and must be taken every day to work.
I recall very few people who have complained of other side effects with Cymbalta.
Jane1618 charlie58834
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Do you get really bad itching in and around your eye? Mine never stops and I had shingles in March 2016, I had it in my forehead, head and right eye, As soon as I wake every morning it's itching and sore, and every fortnight it flares up and is worse, the white of my eye looks pink and cloudy and it feels as though I have something in my eye, so uncomfortable and depressing! Luckily my sight is still ok as the very small scar near the cornea isn't in my line of vision.
I get no pain at all, it's just the soreness and itching that is really getting my down. I have eye drops, eye gel, antivirals which i was told to go back on, 2 a day, and steroid drops. despite all this, nothing seems to work. I use E45 on eyelid and sometimes antihistamine.
I sometimes feel as if I am in the minority, as most people seem to get over shingles in a month, but I had it very badly and my forehead became re-infected!
I would be grateful for any advice,
Thank you
charlie58834 Jane1618
Posted
Hi Jane,
yes, my primary symptom is itching, in same areas as you. That area is called the ophthalmic branch of the trigeminal nerve. Ive had it for 27 years. I've learned to manage it well in that time, and the symptoms have decreased over time.
I'm not sure if you are having repeat episodes of shingles, or if you are having exacerbations (flare-ups) of postherpetic neuralgia. They are different. Shingles is caused by the actual virus, but PHN is the more or less permanent condition caused by physical damage to the sensory nerves. If it's PHN exacerbation, anti-virals and steroid drops may be inappropriate.
Think of the itching as being caused by inflammation in PHN. So then the goal is to reduce inflammation. Try Aspercreme on the skin around the eye (not in the eye!) and on the forehead. It has salicylate 10%, the active ingredient. Another thing I've discovered that helps a lot is to drink a glass of water as soon as a flare-up starts. I guess my exacerbations of itching are caused by mild dehydration that I'm not aware of. About 30 min later the itching subsides.
Hope this helps you, Jane. Try it and let me know if it does.
Jane1618 charlie58834
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Hi Charlie,
Thank you so much for replying, You are probably right about the dehydration, as I know I don't drink enough water! I will also try the Aspercreme !
charlie58834 Jane1618
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Try the large glass of water next time you have a flare-up of itching. Then see if the itching gets better in about 20-30 minutes. Then you know for sure if this will help you. While you're waiting, use a little Aspercreme to knock the pain down a bit.
Jane1618 charlie58834
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I don't get any pain, just sore eyelid and eye which is not really pain, it's the itching and discomfort that is so bad!
charlie58834 Jane1618
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babs99203 charlie58834
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Ah yes, the wondrous, multi-facted ways PHN can make us miserable! I think I've had about 10 different types of "pain". It could be fascinating, if it weren't us, right?