Still thinking about shingles and gabapentin

Alisande

My shingles saga began on August 3, and I feel as though it's not over yet. The blisters, which were on the back of my scalp, have been gone for some time. I was scrupulously careful about not scratching them because I'd read scarring could lead to permanent hair loss. But I've been losing hair the whole time, and it's still falling out. At some point I realized I was losing hair from both sides of my head--not just the right side where the blisters were. So I blame the drug gabapentin, which apparently can cause "long-lasting" hair loss. I still don't know what is meant by "long-lasting," but I plan to ask the neurologist.


I was prescribed gabapentin at a low dose (two 100mg capsules once a day) and I cut it in half early on. I was grateful for it at first, as it gave me relief from the unremitting nerve pain I'd experienced from my neck down into my arm, but it soon became obvious it was messing with my mood and memory. My brain is one thing I don't want to mess with! Many thanks to my KT friends for pointing out some of the downsides of gabapentin. I got off it after a few weeks, and waited for my memory to get back to normal and my hair to stop falling out. I'm still waiting.


But now I have another issue to deal with: weird tooth problems involving nerves that act up and settle down, and in one case testing healthy one day and three days later testing dead, leading to a root canal. I wondered . . . since gabapentin acts on nerves, could there be a connection? I Googled gabapentin teeth and found all sorts of complaints about the drug. People claimed it was responsible for their tooth decay and loss. Whether all the accounts are true I have no idea, but the possibility of a connection makes sense to me.


BTW, I've been cutting my own hair (not very well) because my head is still sensitive, but I didn't realize just how sensitive it is until yesterday, when I was outside and a gust of wind parted my hair in the back. Having it pulled away from the scalp like that hurt! But on a positive note I slept normally twice this week--my first good night's sleeps since all this began--and the resulting increase of energy has been dramatic. So encouraging! I hope the other shingles sufferers here are doing well.


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Uptown Gal

I am sorry you are still dealing with this "monster"...but glad that it is starting

to loosen the hold on you. I have been down that road, and pray I never

have to again. The last "return" was pretty mild compared to the original, so

hopefully it will remain that way. Not sure if it would have been better not

having the shots...or the shots did help.

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phoggie

Sorry! I am about a month later than you and this deep nerve pain from my breast bone..:breast...under my arm...across my back to spine is so painful! I take 300 mg at night ( but am supposed to take it 4 x daily for a leg problem). I have thought my hair loss was from thyroid problem, but maybe not.

I hope we both will be rid of this pain soon! But a friend told me last night that her dad had it for 5 years...,and sadly someone else said her brother had it so long that he could not take it any longer and took his life:-(.

Shingles are terrible and I hope everyone will get those shots!

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ravencajun Zone 8b TX

I still have a terrible amount of pain from my shingles episode. It has been a long time now so I guess it will be a forever thing. I refuse to take gabapentin. It's not one I can take. I do take amitripitiline every night. It gives me a very dry mouth, but I keep a water bottle near by to take a dip during the night.

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Bluebell66

I’m sorry we have so many folks here who suffer with shingles. I have been on the waiting list forever to get the vaccine.

Raven, I’ve been on one 10mg amitriptyline pill for about a year to dull nerve “pain” that otherwise causes a chronic cough. Six days ago I stopped taking it to see if it is the cause of my weight gain. (That’s one of the side effects but I’m on such a low dose I wasn't too worried about it.) For as long as I was taking it, I was also getting a bad cramp in my right calf 2-3 times every night while sleeping. The day I stopped taking the amitriptyline, my calf cramps also stopped. I had never put two and two together, but I’m 99.9% certain amitriptyline cause my cramps.

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loonlakelaborcamp

The shingles can cause the tooth / nerve difficulties. Especially if it is affecting the trigeminal nerve on the head.

It can take along time to get over the shingles pain, I still have residual pain and weakness, 10 months later.

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ravencajun Zone 8b TX

Bluebell I also have a sensory neuropathic cough! One of the reasons I take the amitripitiline. But I also take it for other nerve related pain and problems. It actually helps my restless legs. No leg cramps from it for me. It does help me some with the shingles nerve pain in my hip and leg. My pain is years from when I had the actual shingles.

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Alisande

Raven, I'm so sorry you're still dealing with this! Shingles seems unfair to me. Some illnesses can be related to lifestyle decisions, but all we did to "cause" shingles was contract chicken pox--usually when we were little kids. And then we get hammered in later life.

Loonlake, no trigeminal nerve involvement, I'm happy to say. I've had many trigeminal issues over the years, usually related to herpes cold sores or trauma from dental work.

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lily316

Since I was completely banned from Houzz months ago, I didn't know about this, Susan. I'm so sorry you had to go through it. Did you have the shot? I had the original years ago and signed up for the two-shot course. It took a few years before Rite Aid called a month ago and said I could come in. So I got the first one and hopefully the second will be available when I need it. Members of my family had it and it was an awful experience for them. One aunt lost her vision. Hope you feel well soon.

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Alisande

Thanks, Lily. I had the shot they gave some years ago, but haven't gotten the two new ones. That's terrible about your aunt. I had no idea you were banned from Houzz. I haven't been here as regularly as I used to be. Well, I'm glad you were reinstated.

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Kathsgrdn

I hope things get back to normal for you soon, Alisande.

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Alisande

Thanks, Kath. I really can't complain--I'm feeling so much better than I was. I'm grateful to be doing as well as I am.

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phoggie

Alisande...glad you are improving. How much Gabapentin are you taking? I was supposed to double mine but with so much negative things about it, I am trying tough it out... I also had the one shot vaccine several years ago and really wish I had not put off getting these others. Take care and keep improving!

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Alisande

Thanks, Phoggie! I'm not taking any Gabapentin--haven't for weeks now. Originally I was prescribed two 100mg capsules at bedtime, but I cut it in half at some point (maybe after a couple of weeks). After a couple more weeks I started skipping days, and then stopped completely. Apparently we're not supposed to make an abrupt cold-turkey stop.


My first bout with shingles came with a lot of pain too, but my doctor prescribed a painkiller, not gabapentin. This time, different doctor. I hope you're able to sleep, Phoggie.

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lkihlk hiffmpequt

Not a fan of gabapentin. I had Bell's Palsy and some nerve pain from it (rather mild pain compared to shingles!) I was Rx'd a low dose and it sent me spiraling into the beginnings of depression like I couldn't believe. Luckily I'd read the possible side effects and knew what was happening, so I discontinued it. A friend has rather bad trouble with depression and had finally found a good combination of meds. She was Rx'd gabapentin for some hand pain and didn't realize it would through her other meds off. She was in tears because she could feel the beast of depression clawing at her again... Luckily my experience helped me warn her off it. She spoke with her Dr. and her depression receded once she got off of it. A close call.


I'm an RDH, so my 2 cents about teeth: Anything that causes 'dry mouth' can exacerbate tooth decay. Saliva buffers the acid produced by bacteria when you eat, and lowered pH plays a major role in tooth decay. If you have to take a med that causes dry mouth do as ravencajun does and sip water. Avoid drinks with sugar, including natural sugars found in juices and milk. If the dry mouth is very bad it is easy for your gums and tongue to become irritated, and inflamed. Gabapentin messes with your nerves and can cause gingivitis and oral irritation.

We often recommend a product called Biotine. A mouth wash/rinse that helps to keep your mouth from feeling dry and will offer some relief. Avoid any mouthwash with alcohol in it and anything flavored with cinnamon, as it is a natural drying agent. Use the softest bristle toothbrush you can find. If toothpaste feels too strong, skip it. The mechanical action of the brush is what is really cleaning your teeth anyway, not the paste. Biotine also makes a toothpaste. These products are not cheap sadly.

I've also seen little clear, bead like dissolving tablets that adhere to the roof of your mouth and supposedly offer relief as the dissolve. I've never tried these myself.

I've also read that gabapentin is used by opiate addicts in high doses to somehow increase the effect of the the opiate. It really is a disastrous med. It's original FDA approval was as an anti-seizure med. Now it's Rx'd off label for everything.

I hope you feel better soon!

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