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Postherpetic neuralgia

Sep 23, 2015 9:17 PM

I'm 23. I had shingles about two years ago. Since then I've been dealing with pain in my ear. On a good day, which thankfully most are, it comes about once an hour and lasts a few seconds. It is incredibly intense. This week, I found out that I have exhausted all the options for medication. This week I also found out that I have a mild case of interstitial cystitis- I experience pain everytime I urniate. Both of these things seem so small in comparison to what people go through but I am having a hard time with them anyway. Am I weak?

Sep 23, 2015 9:45 PM

Kcs you are not weak at all. My mother had interstitial cystitis, and a friend also had it. It is a very painful condition. As to your ear have you been to a Ear specialist to have them check it to see why it is still hurting you. Ear aches and tooth aches are two of the worst pains anyone can have. Did the shingles go down inside of your ear? It seems like you Dr could give you something for your pain. Will keep you in my prayers. Hugs

Sep 24, 2015 7:13 AM

kcs, NO you are NOT weak!! We all deal with our pain in different ways and have different tolerance to it. Why have they said you've exhausted your options for medications? I pray that you will be able to find a doctor or team of doctors that will find the problem and be able to ease your pain. I wish you all the very best of luck. Welcome to our community family and know that we are all here to help. Be comfortable and know you can say anything you need to say and there will be no judgement. We are all just a keystroke away.. You're never alone. 🙏🏻🌻

Sep 25, 2015 9:48 PM

Kcs, you aren't weak. You're just needs to the IC pain. I have it and it's painful. You should get under a urologist or gynecologist. There is treatment to help, and there may be foods in your diet aggravating the pain. Good luck and I'll be praying for you! 🙏🌼

Sep 25, 2015 10:19 PM

Thank you all for the kind words prayers and support. I appreciate it so much.

Sep 26, 2015 4:45 PM

Kcs, I promise you are NOT weak shingles is very painful. And as to intersistial cystitis, it rates as painful as cancer pain. There's been plenty of studies about the painful condition IC. You are not a weakling! Don't believe that, and if anyone tells you that just remember they don't know what is like to have chronic pain.

I've been battling IC for most of my life and was only recently diagnosed. I have become sensitized to most treatments and now rely on procedures every 3-4 months (hydrodistention under pressure every few minutes for 3o minutes).

I also have fibromyalgia, spondylitis, severe chemical sensitivity which can cause an outbreak or flare of any of my long list of conditions, severe asthma and a few other conditions that i can't always remember. Oh and adenomysis which is a bad one, because whenever it flares so does my IC.

I hope that you can find comfort in the fact that you are not alone and that you have options. Whenever a doctor has told me theta nothing more s/he can do, I find another doctor who is willing to understand all my conditions and look at me as a whole person not just a disease or a set of diseases.

There is hope. May I ask, are you on the IC diet? What medications have you tried to help the interstitial cystitis?

Big, gentle healing hugs

Sep 26, 2015 10:54 PM

I only just found out I have IC a few days ago so I haven't tried any medications. I am currently on the IC diet. It doesn't seem to be helping but it might take time. Do you know if IC gets worse over time?

Sep 27, 2015 12:01 AM

@kcs it will take a little time for the IC diet to kick in. And also there could be some good intolerance that you are unaware of that are affecting your bladder. That's what has happened to me. ALCAT testing helped me out. Have you checked out ic-network? they have a lot of good quality info.

Is your doctor any kind of help? I also use vistaril for my bladder and it has helped immensely! Let's keep in touch. I know how scary this is at first. They say it doesn't progress but i have seen firsthand that this may be untrue.

Hand you been dealing with the symptoms for long?

Sep 28, 2015 8:54 PM

My symptoms started this winter, in January or February. My doctor hasn't been much help. She has been focused on the pain in my ear that was caused by my shingles. She did refer me to a urologist who diagnosed me and told me to try the diet. He didn't mention medications.

Sep 28, 2015 11:03 PM

Maybe try for a urogyno who is more versed in the realities of IC. I have done a lot of research and found some of the treatments myself that work.
The antihistamine, vistaril, really made a big difference. It took a few weeks but one or kicked in, I was blown away. I would start out at 25 mg because it knocked me out when they rx'd the 50 mg. I still take it at night even though the doc rx'd for every 8 hours.

The ic-network has a list of doctors who treat IC. you have to contact the Web master of the ic network but I'll tell you what definitely worth it! (it may have changed since i started this journey but let me know if you would like some more direction or websites.)

I hope you can find a handle on this. Also ask your doctor about pelvic floor dysfunction, one you find a doc who can tell you more about the illness.

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