Newbie to post shingles neuralgia
Posted , 3 users are following.
I can't really claim PHN, as I am only in my first week of post shingles neuralgia. Hoping someone can tell me if what I' m feeling is typical. My shingles rash was centred behind my ear and on my earlobe, lower cheek/jaw, neck, also spread into my lower skull. I had no itching, some pain and discomfort and started taking valacyclovir at first appearance of rash. Six days ago I went outside (cold air) for first time in 2+ weeks and within the hour, experienced 2 attacks of sudden deep excruciating pain in my cheek. Next day, I touched a scab on my skull and triggered the most sickening deep pain I've ever felt. Later that night I had another attack this time from the area of my ear. that day I started taking Gabapentin 300 mg 3 times/day. Two days later Dr increased to 400 mg. In the last 4 days I've had 4 attacks each day, all from the ear and neck area. All these pain attacks last about one minute of horrible pain. The rest of the day, my ear and cheek/jaw area feel either numb or tingling pain with occasional pain in the ear. My stress is waiting for the next attack to come. Is this how it starts with everyone? How long did these sudden onset excruciating pain attacks continue? Since this is only Day 5 with Gab, I can say I don't see how its helping but probably needs time to kick in? and maybe higher dosages? Weird as it may sound, I have the feeling that the Gab triggers an attack but that's probably my imagination. At this point, I haven't had any relief from extra strength tylenol or advil. If I can't stop the nerve attacks, is there something that will make them less severe? My doctor is not knowledgeable other than basic textbook info, when I asked her about a lidocaine 5% patch, she said lidocaine patches are OTC. She wasn't aware of the patch used for PHN. So she's not going to be a great resource with this. Any ideas, please share
0 likes, 5 replies
babs99203 DeaDea
Posted
Hello DeaDea, I'll try and answer some questions. First you do NOT have PHN, that occurs weeks or months (depending on which definition you believe) after the outbreak of shingles. You're still in the active stage of shingles which can last for a while. You may want to post in the shingles forum also, as it's been almost 3.5 years since my shingles. I believe many people are ill for 2-3 weeks. Not everybody gets a rash or itching, I didn't. But I DO have PHN, and have had it since December 2016 (my shingles was October 2016).
The next part: If the trigeminal nerve is involved, that, unfortunately can be a very painful area. It's terrific that you got the anti-virals, that often helps decrease or stop the progression and symptoms of shingles. But they need to be taken within 72 hours of the first symptoms. I'll be honest, I'm not sure which part them mean, I had pain for 6 hours, then felt fine for two weeks, no rash, no itching, only 3 tiny bumps at that point. Then 5 days after THAT the pain hit and lasted, so I never got anti-virals.
Gab is a very difficult and problematic drug. For many it doesn't help much and the side effects can be devastating. Also if someone's on it for more than 3 weeks, they need to slowly decrease the dose and go through withdrawal during that process. So if you think it's not helping, I'd consider decreasing the dose and getting off it. Not everyone has the memory loss, depression, confusion, fatigue, shaking, headaches, sleep problems etc. but it's not rare and doctors are clueless. YES 5% Lidocaine, in the US is prescription strength, but you can get patches and cream at 4% OTC and it's just about as helpful.
As far as the gab causing pain, it's possible, but most people don't notice that until months or years later as they try and get off it. I'm finally off gab after 3 years (and a previous dosage of 2700 mg). Each time I decreased (10% of my daily dose, holding at that for 6-12 weeks before the next decrease) I had withdrawal and increased pain, fatigue, confusion etc. Then eventually the pain lessened. As I was finally down to 300 mg, then off totally, I had almost NO pain. I realize for me, and for some others, the gab was causing the pain by affecting our nerves.
I know this is a lot to take in, I hope it helped. Research TN or trigeminal nerve and shingles. Don't get too frightened of some of the descriptions, however. Remember, you are still dealing with being sick with the shingles. You need rest, just like you had the flu or pneumonia etc. Shingles is NOT just a rash, it's a viral infection. Research shingles and gab, so you can make some informed decisions.
DeaDea babs99203
Posted
Thank you so much. I have posted on shingles forum. My doctor said I no longer have shingles but this is neuralgia as a result of shingles. Guess its just a different stage. Feels like I just wait all day for the next nerve attack, can't relax.
babs99203 DeaDea
Posted
How many days or weeks ago did you actually feel you had shingles? I won't say diagnosed, because sometimes it takes days to get into a doctor. Many doctors aren't very well informed on shingles, there are a lot of common myths some believe i.e. you can only get shingles once, you only have shingles if you have a rash, only old people get it etc.
I'm sure it's upsetting wondering when that pain will increase but gab can also cause anxiety, so that may be making you worse emotionally. The active stage, where the rash and pain increase, you may feel ill, nauseated, tired can last a few weeks. The pain can last longer. My doctor said that 4 weeks after the DX lingering pain means PHN, but some specialists often feel that's just slower healing and true PHN is after 2-3 months. For something that's so disabling you'd think that there'd be more consensus on it.
babs99203 DeaDea
Posted
I still get updates from the shingles forum so I saw your post and the replies. Merry is a godsend and helped me so much during my darkest times. Like you, I couldn't get much information, then I found this group in the middle of the night. I don't know how I could have gotten through it without her support and advice.
Read as much as you can, go with what feels right for you, as we all try to help but corresponding online effectively can be challenging.
Ranger1 DeaDea
Edited
D,
You have PHN. There is no cure but there are many ways you will figure out how to make yourself comfortable. No one can find the best way to care for yourself than you. So keep trying and researching and listen to others on this site. Mine ruined my life for 5 straight years and then started backing off. I could not drive, sleep, eat sugar, coffee,alcohol.I could feel a heat source fifty feet away and get the shocking sharp pain you explain by a passing cup of coffee. I could not go to restaurants because of that. I could not eat heated or cold stuff placed in front of me for a meal because of the shocks I would get from the temp differential from the room temp. It was ridiculous. I was getting what they call Progrome PHN syptoms 4 months before I had the Blister from shingles. Dr thought I was insane. Went to the ER 5 times before I was diagnosed with shingles becuase of the blisters on my left side torso.
I have had it for 6 years. I used to take GAB like you. Now I take Lyrica. 225mg 2x a day. I went to Lyrica because it only required to take to twice a day and GAB 4 x a day and always made me feel drunk and unsteady. Lyrica just gave me suicidal thoughts for a few weeks and I got over it.
Lidocane patches are nothing more than a environmental lsolator. It protects the area from changes in Temp, pressure, humidity, and wind. Those 4 factors set off my nerve which is malfunctioning. It is malfunctioning because it was damaged by what ever triggers The shingles virus. They say chicken pox's.The sensory system around the scar area is hyper sensitive.
PHN anywhere is very painful. However PHN above the neck is the toughest.
Cold and wind are my worst aggravators as well as heat & humidity. I have moved around the country and found AZ is the best environment 9 months of the year. 3 months the heat makes it tough because you have to go inside and that is air conditioned and it is tough to go into the colder environment.
You have to wear a cold weather cap whenever you consider going outside. take your meds. Read,, search, see what others experience and how they coped.They say JOB in the bible had shingles.
God Bless you I pass on strength and perseverance to you. You are the best treatment, educate yourself and guide your doctors.
Mark