HealingWell
Search Close Search
☰

new here/ introducing myself/head pain for 9 years with no luck

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/29/2009 4:35 PM (GMT 0)
I just joined today when i saw a members' post about a cranial implant. I'm a 55 year old female. about nine years ago I got what we thought was a cold so I was treated for a cold, then an ear infection, then allergies, etc etc etc. It turned out to be none of the above but rather shingles in the right side of my head which left me with nerve damage and chronic severe pain in my face and head. After 13 doctors and as many blocks, cryoprobes,a supraorbital nerve stimulator and trial opcipitol nerve stim trial implant which did not help and I refused to have the permanant implanted I have found no relief.I had previously found relief on Actiq but when I refused the 2nd stim implant my doc refused to prescribe it anylonger and would only order norco. After 8 very long and extremly painful months he finally added 10 mgs of opana but cut the norco to 4 x's a day. I have yet to find any doctor, including Mayo, who will see me for another opinion . As soon as they find I have the stimulator they will not see me due to the risks. Currently I take 10 mg Opana, Norco 4xs for breakthrough, 50mgs topomax, 75mgs lyrica and thats just the pain meds. I am hoping at the next visit he will at least agree to increase the opana to 20 mgs to see if it will help. At this point I am losing faith and any hope . Its been 9 years, I've had to quit work go on disability, run through  retirement fund to pay for the Actiq and can't seem to express to the doc exactly how much pain I am really in. Any help anyone can offer ,or any thoughts on  drug "cocktails" I may suggest would be appreciated. I don't know what we haven't tried but at this point am willing to try anything.

thanks

catahoula

Posted 12/29/2009 5:15 PM (GMT 0)
Hi Catahoula,

I also replied to you on my thread. I'm glad that you were able to find us here. The CP board is a very active and supportive group. We're so close that you'll often see us refer to one another as "family." We love nothing more to add new members to our little family (although it is regrettable that everyone comes here because of CP).

It is particularly interesting to me when someone comes along with facial pain. I have severe chronic pain in, around, and behind my right eye from a nasty trauma that I suffered 3 years ago. So far we've not found a single med or treatment (with the exception of one nerve block, which is pretty dangerous & thus can only be used as a diagnostic technique) that has made a significant difference in my pain. I've gone through so much stuff, I can't even begin to list them all. This stimulator trial is essentially my "last hope" until some kind of new treatment comes around. The only other thing left to do is to remove or kill the eye, which I will refuse for many reasons. I also have a bunch of other rare major problems with my bad eye, and while it continues to get progressively worse, no one has been able to give me a diagnosis (which is very frustrating).

I hope you'll stick around & get to know the people here. Everyone is wonderful & the knowledge they share is invaluable.

Here's to a pain-free new year,
Skeye
Posted 12/29/2009 5:22 PM (GMT 0)
Hello, and Welcome to the CP forum! I'm sorry to hear about your pain, and we have a young lady that suffers from the same type of pain. I will email her and ask that she takes a peek at your post, as she may have some suggestions for you. Her screen name is tmjpain, so be on the look out for her reply.

Michael

OK, I just emailed her. I hope she is up and around.
Posted 12/29/2009 8:10 PM (GMT 0)
I too have post-herpatic nueralgia, I had shingles in my ear. Anyways, I am on lyrica 150 2x a day along with oxycontin 3x a day. This along with botox seems to be helping. I sure hope you can find relief, I know the pain can drive you insane.
Posted 12/29/2009 8:25 PM (GMT 0)
Hii Catahoula, love the screen name. By any chance do you live around or near a teaching hospital? I know many times people turn to one for care when many other things seem to fail. The beauty of the teaching hospitals is being on top of the latest thing avaialable but most of all not having to deal with egotistical whitecoats. I am afraid they make them leave those at the front door.

I just don't understand these drs and their attitudes about pain. I have a pain pump and my dr that had mine put in was limited in knowledge of pumps & the meds that went in them. After awhile I was right back in the same shape before getting the pump, no I was worse when I think about it.

We really don't like to try and offer up what medications may work on someone because we all metabolize the meds so differently. What may work for me may not touch your pain. Another thing is if a patient walks in and says he/she would like a particular drug, most likley that sends a red flag up and the dr think we are addicts, so tread carefully there. One thing you might discuss rather frankly with the dr is you thought by having this implanted that between it and the proper pain medications you would get some quality of life back and that is what you are seeking, quality life. If he continues to not budge on either increasing your meds or trying something different, don't back down, ask why you are being denied the possibility of trying to live a half way decent life. Ask him what he would do if he was in your shoes.You have nothing to lose by drawing him out and getting his full attention. One thing I learned is we have to advocate many times for decent care. When do you see your dr again? I truly feel bad for you and feel this dr is being so unrealistic.
Posted 12/30/2009 12:25 AM (GMT 0)
oops, sorry did not meen to say my pain med mix would work for you, just a suggestion. After reading straydogs reply, I felt pretty stupid, anyways, I hope you get feeling better
Posted 12/30/2009 2:03 AM (GMT 0)
nervegirl

You did alright, you just explained what your Doctor did for you and how it is working for you! No reason to feel stupid or bad about that! Straydog is right we all are so different and what works for one of us might not work for another. But Shingles pain is very difficult to treat and it can be very long lasting! The problem is usually finding a Doctor that really cares for their patients and is serious about adequately treating their pain. It put the patient in a very touchy situation, all you want is to have a normal life without pain, but your often looked at negatively as if your an addict or something! Even many Doctors are not well verseed in pain management, and allot of them don't even have the slightest idea on how to even properly interact with their patients, so it often just makes a bad situation just that much worse. The only thing I can say is I am glad there is this Pain Forum with such terrific people here that do understand what it is like to suffer with chronic pain and the trials and tribulations that go with it! The people here might not be able to fix or even physically ease your pain, but it is nice to have their, warm, comforting, and compassionate support, and understanding, and it helps just to know your not alone in your suffering!

White Beard
Posted 12/30/2009 3:29 AM (GMT 0)
Hey NerveGirl you did fine as WB said. We don't mind saying what we take for pain relief we just don't want to mislead some one else in to thinking it may work for them too. I am glad to hear that your meds are helping with your pain. I had a friend gpt shingles and boy was she ever in some pain. Good luck.
Posted 12/30/2009 6:43 AM (GMT 0)
Hi Catahoula!

And welcome to the family. We all may have suggestions and even with that we might not be able to totally solve your problems but we sure will give our best...I can promise you that. One of our moderators, Stella Marie, has been dealing with a brain disorder and has lots of knowledge and experience that I know she'll share with you. If she hasn't come by soon I'll email and ask her to offer some ideas. Again, she's not a doctor but her thoughts and ideas may help you ask the right questions or get to someone who will treat your pain better.

I know you've been to a lot of doctors and to Mayo but have you been to any of the teaching/university hospitals? They are on the cutting edge of technology and it might be just what you need. There are these types of hospitals and doctors in every state. In the CP 101 thread there is a list of the majority of them and you can find one nearest you. It may be a long drive but I would think it's well worth the trip. Here's the link to find one nearest you so you don't have to go searching around for it. ;-)
en.wikipedia.org/wiki/List_of_university_hospitals

I do hope you get some help and relief soon! Your family here is supporting you in any way we can. It doesn't matter if you have been a member 1 day or 10 years, everyone is important and we truly care about each other. Just let us know how you're doing.

Chutz
Posted 12/30/2009 1:40 PM (GMT 0)
Welcome to the Healing Well family.  I am so sorry that your severe pain was the reason you had to seek us out.  The Chronic Pain forum is a wonderful mix of people suffering from chronic pain due to a multitude of different causes.  Like you, I suffer from various types of damaged nerve related pain, as well as muscle spasticity.  I have a neurodegenerative brain disease that affects different nerve clusters in my body.  After many years dealing with this, I have come to learn that pain resulting from damaged nerves is one of the hardest forms of pain to treat.  I have been to several teaching institutions and have personally found that there is no one textbook formula for treating chronic nerve pain.    Please keep in mind that I am not a doctor and refer to your doctor for specific medical advice .   I am only relating information that I have gathered from various doctors that I have had consults.  Also - please excuse any typos.  I have typing on this forum.   Frequently, doctors first try something topical like Llidoderm ® patches.  Lidocaine is added to the gel sticky backing on a 4 x 4 topical dressing.  For many shingles patients, especially those with post-shingle nerve damage on their trunk area, these can be every helpful.   At $10 a dressing, they are also expensive.  The patch can be worn for 12 - 18 hours on and 6 - 8 hours off.   I still find a use for them occasionally, so they are worth a trial.  However, I am not sure I would want a 4 x 4 dressing stuck to my face.    Most of the consults I had immediately jumped me to the Fentanyl Patch.  I am not sure whether you have trialed these, but for some people they do work nicely.  It is the same medication in your Actiq, but at a much lower strength size 1” x 1-1/4”(+/-) i.   They are a thin patch with Fentanyl mixed with the adhesive.  These patches can be worn up to 3 days, so they offer continuous coverage without having to remember to take pil a pill on a regular schedule.  These patches come in a variety of strengths, most doctors start with a 25 mcg patch first and then offer patients some other type of immediate release narcotic for break through pain that the patch does not handle.  One problem with Fentanyl is that you have to cut back on hot showers, sauna’s. tanning beds, hot tubs, and hot baths.  Anything the raises your body temperature causes the Fentanyl to be released more quickly chancing an overdose.  Fentanyl is designed for patients that had already been exposed to narcotic therapy.   Over time, your body will develop a tolerance to the medication and you will need higher and higher doses to get the same affect.    I never experienced great pain relief with the Fentanyl patches, so the doctors would keep increasing the dose of the patches.   Actiq or Fentora are the same thing, except they were highly concentrated immediate release doses.   Actiq is in a lollipop form and Fentora is a quick dissolving tablet made to go between your check and gums.   These products were designed for patients with stage 3 - 4 cancer.   They are very expensive $100 - $250 per dose.   Sure the work, but they quickly dissolve and release the medication – last only a couple a hours.   They are designed to avoid a trip to the ER for treatment of level 10.   Because they are very strong they can be very addicting to some people.   I could not quite understand your posting.   Do you have and a neurostimular?   I have one, my doctor convinced me it was one of the last resorts to pain control.   It generates a signal the masks or blurs the pain you a feeling.   It does not eliminate or reduce the original pain signal.   Sometimes I feel it does help me and reduce the amount of narcotics I need.   Other times it just adds one more sensation on top of the pain – and it over stimulates the pain and electrical tingling sensation – putting me in a state of overload.   The best thing that I ended up getting was an intrathecal implanted medication pump.   It pumps very low doses of medication (1/100 th the amount of an oral dose) into a catheter that is implanted in my spinal cord.   The low dose almost eliminates all the side effects associated with the narcotics.   My pain is well controlled and I have a wider selection of medications available to choose from. The key to great pain control is to have a GREAT PM doctor knowledgeable about all the options available.   Sometimes this requires and second and third opinion by well-educated PM Doctor.   Do not rush in to any therapy without thoroughly discussing it and weighing its pros and cons.   Good luck.   I am always available if you would like to talk.
Posted 12/30/2009 4:03 PM (GMT 0)
Cat,
Have you ever been given Torodol (it comes in a shot or oral -- generic=ketorolac)? I used to get horrible headaches & that really helped. Beyond that what made a difference more than anything was Radio Frequency nerve ablation (RF). Unfortunately, I can't do that anymore because of where my SCS is implanted. Not sure whether it would be an option for you or not.

I do agree that it can be hard to find a doctor who will prescribe Actiq. A lot of doctors are ignorant about what it is & how it works. I am constantly told by ignorant doctors that it would be better for me to be on the Duragesic patches because I would get the same relief with less fentanyl on-board. But the reality is that Duragesic patches allow 91% of the medication to be absorbed by the body. That means that for a 25mcg/hour patch, you are getting nearly 546mcg of fentanyl per day. The Fentora allows approx. 75% of the fentanyl to be absorbed, so if you are taking 4 of the 200mcg doses per day you are getting 600mcg of fentanyl on board. But if you are taking 4 of the 200mcg Actiq lolli's per day, you're getting less than 400mcg of the medication on board because less than 50% of the medication is absorbed by the body. Once I found a PM could understood the math, I had far fewer problems getting it prescribed. Still, depending on how you use the medication, it can cause issues. If you use the entire dose all at once, it usually provides 4 hours of relief. Since the maximum dose allowed is 4 per day, that can potentially cause problems. But my PM encourages me to not use a whole dose all at once. That way, when it starts to wear off I can use the rest of it & still only have a single dose over a 6 hour period of time.

I will say, though, that the patches are a lot cheaper than Actiq or Fentora. If you are able to tolerate them, that could be an option. There are a lot more doctors who are willing to prescribe Duragesic patches than are willing to prescribe Actiq or Fentora. As many other members have noted, though, they don't always seem to last for the full 72 hours they are supposed to. Some people have to change them every 48 hours -- which can at times cause issues with doctors.

Fentanyl is addicting, but a simple evaluation with an addictions specialist can often put that fear to rest. People either have addictive tendencies or they don't. If you don't have addictive tendencies, there shouldn't be any worries about becoming addicted to fentanyl (though you would be dependent on it). If you do have addictive tendencies, that would have to be very carefully monitored & perhaps fentanyl is not the best med for you since it can cause addiction issues much faster than most narcotic meds.

In any case, I wish you well. I just had a nightmare headache for over 2 months. Finally my PM wrote me for Torodol & 3 days later my headaches were completely gone (& I was off the Torodol). It is NOT a long term solution. It is a high-potency NSAID & can cause GI issues if taken for a week or longer. Sometimes, though, you just need to get the pain under control & then a weaker med will do the trick.

hoping you feel better,
frances
Posted 12/30/2009 5:30 PM (GMT 0)
thanks Frances. I do have the Torodol in 10 mgs oral as a PRN last resort and it is really hit or miss if its going to work. There are times when I ended up at the ER and the shot of it worked great and others when it did nothing.
We tried the duragesic patches for almost 7 months all the way up to 150..nothing..I have a drawer full of them in various dosages. Have been through MSIR,Avandia, oxy extended and fast acting..another thhhhat started with an F( can't think of it now but then with all the narcos' my memory is really shot). At this point after 9 years, addiction is not my concern, I just want some pain relief.
thanks for your response
cat
Posted 12/30/2009 6:20 PM (GMT 0)
posting a quick reply to you all..THANK YOU THANK YOU THANK YOU!!!!! I have felt so alone for the past nine years in trying to explain to doctors and family and friends what it is like to live with constant unrelenting pain in my head, face ear, eye and have them look at me as if to say "its all in your head" when all I want to do is say "EXACTLY!! it IS all in my head!!" I guess if they can't see it, they can't understand. How do you point to your head and just say "it hurts" but a doctor comes at you with a nerve block and says "point to where it hurts" and you can't because its IN your head. I would try to tell ask them if they had ever had a hangover and had that "fuzzy, cloudy feeling( which of course they all denied) well I have that fuzzy cloudy feeling 24/7. Do you know what its like to sit by the ocean by the shore and have a big wave coume by and knock you off your balance..that WHOOSH feeling? I get those whooses 10-12 times a day out of nowhere. I can't tell them where the throbbing is or the burning is or the aching is or why my eye is tearing yet my face feels like its burning...They just look at me like I'm crazy.
Anyway. I am currently being seen at Rush Presbyterian/St Lukes which is a great teaching hospital. I have also been to Loyola, Northwestern and UIC, all teaching hospitals after doing to rounds of the local docs. I was told it was everything from a cold where we tried all the antibiotics, to an ear infection, then allergies where we tried all the allergy meds and nasal sprays for what was the Eustachian tude disorder when they put the tubes in my ears..again no luck.Next was the neurologists (3 in fact) who tried all the seizure meds and all the CAT scans w/ and w/out contrast. I have no idea how many hours of MRI's. Then to the headache specialist who was a wonderful doctor who sat with me for 3 hours on the 3rd of july and just talked finally referred me to the pain clinic where all the nerve blocks, crryoprobes and finally implantation of the supraorbital nerve stim was implanted. I thought that was going to be the end but the pain has evolved. It was just on the front right side but radiated to the read after the cryoprobes which failed. I think we get to a point where we have to say enough needles. This past may I had the trial of the opicipital nerve stimulator. It was horrible. I was not told that I would need to be awake for the surgery so that I could let him know when he had the 4 electrodes in place. It was the most painful experience I have ever been through. I just remember laying on the operating table crying "it hurts, it hurts".It was suppose to be in place for 4 days. I went to have it removed and said I really didn't think it helped so no, I did not want the permanant one. Doc would not remove saying give it a few more days to make sure its not helping so it was left in for another week.When I went back I said I still did not think it was making any difference. I asked how bad the implantation of the permanent stimualtor would be recalling how bad the trial was. Doctor said that it would be worse because they would have to tunnel to get the electrodes under the tissue. If I was even leaning towards trying it, I think that had made up my mind simply because I remember how horribly painful that surgery was. I said no, I didn't think I wanted it. Again I was told to give it another few days and they would not take the trial out. Two days later I came back,I insisted it be removed but the doc said to think about it again for a week to see if things were different now that the stim was out. I was still on the Actiq now. I came back, said I did not see a difference and I did not want the second stimulator and now I was prescribed Norco and have been on it since May with only the addition of opana one month ago. I sit here writing this with pounding pain in the center of my head, my right eye throbbing, I am running very low on my norco and I don't go back to my doctor until a week from monday, the 11th and I am afraid to go for fear I will be "in trouble" for having used more than 4 a day, but then I need more than 4 a day to ease the pain. I can't afford to go to the ER anymore for a shot of demorol as I am $20,000 in debt from charging the actiq..There has to be a solution. I'm not asking to "tell him what to give me" but rather to suggest what else we might try. It seems he may have given up but unfortunately it looks as though I have no where else to go and I can't give up..at least not yet.
I'm sorry to whine.
I'm just so glad to have found you all
cat
Posted 12/30/2009 6:28 PM (GMT 0)
Hey Cat you never answered any of us about having a teaching hospital around? Any close to you? It may be something for you to look into. I am not sure but did you end up with any dental problems after using the lollipops for awhile? I know some others on here said that was something that happened to them after being on them.

I sure wish we had something that could help give you some relief. Like you say you have pretty much done the gambit of meds. Just thinking about you. I hope you will post and let us know how you are doing.
Posted 12/30/2009 6:39 PM (GMT 0)
boy i thought i posted that whole long whininy post . Yes, I am at a teaching hospital right now after having been to three others.  I did have quite a few dental problems after the Actiq but was willing to have the work done with the pain results I was getting from the Actiq. Let me know if my other response isn't showing up, I think I posted it just before you wrote this morning.

thanks

cat

Posted 12/30/2009 6:52 PM (GMT 0)
Cat... Have you considered what will happen once you build up a tolerance to Actiq. Every 6 months I had to increase me dose. 200 mcg - to 400 mcg - to 600 - to 800 mcg. That was in less than two years. I soon realized that if 1200 mcgs is the max dose - what was I going to do for pain control once I built up a tolerance to all of these meds. These were designed for people who had a short life expectency. Have you discussed with the PM what options you will have once you build up a tolerance to high doses of Fentanyl? That is when I realized that I had to rethink my pain control options. If I were in pain for several years, I needed something that I would no quickly develop a tolerance too. Can you honestly afford this medication? If you already have $20,000 on your charge card - your you willing to go bankrupt for one medication. Four actiq 800 mcgs per day =120 a month. My insurance was paying $5,000. It is important that you discuss all your options with you PM. Even if someone would write you an Rx for Actiq, $5000 per month times 12 months is $60,000 a year. Is this really a viable option for you?
Posted 12/30/2009 7:00 PM (GMT 0)
Hey Gang, I think we are having some major server issues here at the forum.
Posted 12/30/2009 7:12 PM (GMT 0)
Wow, Cat, that guy was really trying to pressure you into that stim. I just have a problem with that and I do not feel its right for drs to do that. We should have a part in deciding our fate since we are the ones living it. Thta was truly unnecessary having you come back & forth like that, thats awful.

You have somehow managed this long, how I don't know, but never give up. More & more things come out and happen every day and who knows something for you may nearly be here. Just hang in there the best you can.

The beauty of this place is having some place to talk about things. With CP its not like something you can see, instead we feel it. Most people relate pain in terms of something they can visibly see, like a cut, gash or a bruise, something visibile that will cause pain. That they understand, something they can't see no way. No, they don't get it, heck sometimes we don't, lol. Take care.
Posted 12/30/2009 7:18 PM (GMT 0)
nono Actiq

yes, I know I can't afford it. I just have to believe there is something else out there that will work. I have to believe its too early to give up.

I just need to keep reading all of your stories. Believe, they help.

thanks

cat

Posted 12/30/2009 7:33 PM (GMT 0)
Welcome to HW Cat. This is an excellent place to brain storm with some of the best folks I have ever had the pleasure of knowing. The only way to appreciate the pain that we are in is to experience it and it sounds like you've really had a horrible time and I don't blame you for wanting it to go away. I'm not much help in the headache/shingles arena but wish you well and know the folks here that have similiar dx will be an excellent resource for you.
Posted 12/30/2009 9:08 PM (GMT 0)
Sorry I can't help you Cat. I don't have the same condition. I have persistant daily headache of pain at 10/10. I have not been able to find any medication, form of therapy or dr. that can help me. So no helpful suggestions from me. But it seems that some have given you some good opinions.

Good luck and I hope your pain will decrease.

Suzane

Posted 12/30/2009 9:12 PM (GMT 0)
Suzane-

what are you doing to get through the day?

How do you do it?

cat

Posted 12/30/2009 9:29 PM (GMT 0)
I don't know how I do it. The oxycodone isn't helping much so today i was thinking of weaning off of it. It is starting to affect my body. such as difficult voiding and emptying bowels, nausea, it's a med that does so much damage to the body. I don't need extra problems. i lie in bed a lot with ice on my head and do smaller house chores. Was going out for a walk but the weather hasn't be great to go out. My husband is a big support to me.. When he is home he always spends the rest of the evening in bed with me watching tv or hockey games. My days are difficult. If the pain could just go down to 8 or 9 I would be able to go in my craft room and start organzing it. But my energy and mood are low right now so not much can get done.

Hope you find some answers for you pain. Good luck.

Suzane

Posted 12/30/2009 9:34 PM (GMT 0)
Cat
Boy you have been through the mill and have been to some of the best places, although I have been Mayos and also to Rush, I thought Mayo was a waste of time, although Rush was of some help to me. I know allot of Doctors push for certain treatments and if you do not want to go along with it, then they will claim your a difficult or non-compliant patient. I don't envy the position you are in right now! I do wish you luck and hope they can come up with something that can help you!

Good Luck to You

White Beard

P.S. straydog Rush is a University Med School It is quite a facility in Chicago.
Posted 12/30/2009 9:39 PM (GMT 0)
I hope it is ok to post back and forth, or if not, do we need to go to e-mail, please let me know so as not to monopolize the board, I must use a stool softener and Miralax for the problem you mentioned but it is very  difficult. I  think any type of morphine type med ( oxy, opana,avandia) will cause  GI issues. I can so relate to  your head pain issue.Please, I don't mean to belittle anyones' pain but sometimes I think its' eaiser to be able to point to an arm or leg  and say "this is what hurts" but to say my head hurts seems to  be something docs just don't quite get.

I send you healing hope. i truly do.

cat

✚ New Topic ✚ Reply
12