Pain clinic people, headaches, and opinions in general

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Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 10/26/2008 6:47 AM (GMT -7)   
Not quite sure what to do, so I figured I would get some expert opinions. I go to a pain clinic. Their specialty is backs, special disc surgery, Trigger point injections, that type of thing. They also do botox for headaches. But I had seen them years ago when I had a muscle spasm set off by a compression fracture in my back so that is where my doctor referred me out to. I'm not overly happy with them as far as how they treat me, its basically, write a script for percocet and leave. But thats really all I need at this point. If my pain ever got worse, I would have to seek out a different pain clinic, I think. They don't really seem to understand belly pain. But for where I am now, pain wise, its fine.

Which brings me to my issue. I was just in the hospital for 4 days for what turns out to be a long standing migraine (week 10, it was never a sinus infection). Their treatment has actually made me worse, so I was sent home on dilaudid. It is the only thing that is making me able to function. BUT, I signed a contract with the pain clinic that I wouldn't take any pain meds from any other source. I have an appointment on Friday at the pain clinic. If I don't get tested, No problem. But, if I do, I'm busted. If I fess up ahead of time and tell that I am on dilaudid and why, they are going to want to be the ones to treat my migraines and quite frankly, I think that some of their practices are quackery. I really think that the head doctor is just there to have a flashy clinic, try new techniques, that don't always work, and make money.

I'm trying to get an appointment with a neurologist who specializes in headaches, hopefully this week. The guy who runs the pain clinic is an anesthesiologist. I want a neurologist.

So what do you say, Tell or Don't Tell?????????
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/26/2008 8:09 AM (GMT -7)   
I'm no expert but this is what I would do:

I would go to your pain clinic appointment and tell them that you were HOSPITALIZED which I think is an exception to most pain clinic rules. Then I would be up front and say now that you spent time in the hospital your diagnosis is in question and you are trying to figure out the best place to treat your new found issues. Tell them that you plan to see a neurologist and then will decide who best to treat you. Deal with it kind of like a consultation. Then ask what they can do for you in the long run and what they are willing to do for you while you are still deciding where the best place to seek treatment is. Be will for them to not give you pain meds while you make your decision but you could assure them that if you decide any other doctor is more appropriate for your situation you will withdraw from the clinic.

Zanne - I don't know if I have suggested this before but have you seen a chiropractor? I had very bad (but not as bad as yours) headaches one summer and no doctor could figure out the cause. My dentist noticed my TMJ from a ski injury and sent me to a chiro. He noticed all kinds of scar tissue in my neck from the injury. He found that to be the cause of my headaches. They were "neck headaches." Once we got rid of the scar tissue and limbered up my neck the headaches went away!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/26/2008 11:25 AM (GMT -7)   
Hi I certainly wouldn't be worried about there reaction I mean yo were given the med because you were hos. but then I haven't been to a pain med clinic. I think honest is always best they might want to discuss the results with you. Good luck. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/26/2008 11:33 AM (GMT -7)   
I was given a script to take after discharge and have been taking it since. Thats what I'm worried about. I don't want them to "kick me out" of their pain clinic, but at the same time, I don't want them to be the ones treating me for THIS problem. I don't really trust them, so to speak. I think they are really good at what they specialize in, but not very good in anything else. So if I fess up, they are going to want to take over and if I refuse, I am worried about their reaction. I am really hoping to get in to see the specialist my doctor recommended before my Friday pain clinic appointment and then I will have a better handle on things. But that really would be asking too much wouldn't it.

Any other opinions or suggestions???
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 10/28/2008 8:03 AM (GMT -7)   
woah wait a second...they make dilaudid available in pill form?? i was on it in the hospital and it really helped me!! i was told by an ER doctor that it doesn't exist..but i did my research online and could have sworn i saw that it existed in a pill form..do they really make it in pill form??
 


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/28/2008 8:33 AM (GMT -7)   
Yes it is available by pill. Generic name is Hydromorphone

My neurologist gave it to me. The doctor who discharged me actually gave me pecocet, 1 pill every 48 hours. I might as well take a tic tac. I do have an appointment this afternoon with another neurologist that is suppose to be an expert in headaches so I'm hoping that I will have some resolution or at least know what path to follow.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/28/2008 9:31 AM (GMT -7)   
Hi If you don't tell them and they find out they would consider that a junkie wouldn't they. Isn't it kind of like not wanting to over med a person just a thought. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/28/2008 9:48 AM (GMT -7)   
I'm actually not taking the dilaudid until after I see the other neurologist. I have no problem telling them I was treated at the hospital and was given dilaudid. What I was afraid of is that they would want to take over the treatment of the headaches, and since I didn't have a good alternative I would be forced to have them treat me. I just don't think they are the right fit, and given the full situation, they could use the dilaudid as a reason to discharge me as a patient if I refused treatment for the headaches. Kind of a rock and a hard place situation. They treat headaches with botox and thats it. I'm not really on board with that, and I don't really want to start looking for a new pain clinic this week. So I really don't want to rock the boat.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/28/2008 12:02 PM (GMT -7)   
Hey Zanne, I guess I'm confused. What is the pain clinic treating you for then? Just Percoset for your back? Couldn't you just get that from a new PCP? I think it would be worth being honest but only you know how much you have to lose. Just remember once you have the X you always have the X on your record. Maybe you should hop over the to chronic pain forum. They have a lot of experience w/ pain clinics there.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Mar1anneC
Regular Member


Date Joined Aug 2007
Total Posts : 79
   Posted 10/28/2008 12:58 PM (GMT -7)   
My opinion would be to be totally upfront with them, including the fact that you are not comfortable with botox for migraine treatment and will be seeing a neurologist. If any additional medication was prescribed in the hospital between your visits to the pain clinic won't that be acceptable to them. If anything call them ASAP so they know what was done in the hospital.

If you are not trusting them then find another doctor/clinic for your RXs. I think we all have to be careful about having to keep taking increased doses of pain meds. I also have bad migraines and my neurologist told me to be careful and that because of the severity of our pain Crohn's disease patients are at risk for addiction.

There are some good migraine medications out these such as Imitrex, Maxalt, etc. Now I am taking Relpax and also Frova. Frova is supposed to be good if you get the migraines that last and last. That's what happens to me. Like 10 days of headache that does not go away. Blech.

Personally I want to try botox. My neurologist recommended I try acupuncture. Also take vitimin B2 (riboflavin) each day.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/28/2008 5:32 PM (GMT -7)   
I go to the pain clinic for my CD pain. My PCP referred me because he was uncomfortable RXing pain meds. This is a common problem for CDers. No one wants to deal with our actual pain. So he referred me to this pain clinic that I had been to years before for back pain. They are great for back pain, but no so much for anything else, even though they claim to "specialize" in other things. My main thing in going to a pain clinic originally was that I wanted to make sure that I wouldn't develop any addiction issues. I have never had an increase in my dosage and have been tested periodically with no problems.

That being said, I didn't want to walk in on Friday and have them either want to treat my headache (they are anesthesiologists not neurologists) or have grounds to kick me out of the pain clinic. So at this point, I have seen a new neurologist, have new medications and a new plan of attack for this migraine and will be upfront about what has been going on without fear of them wanting to take over.

Mar1anneC: I'm not talking about a standard migraine. This has been going on for 10+ WEEKS. I have been hospitalized several times for it and still have it. I have stumped more than one doctor. I've tried everything you listed except botox and thats on the list to try soon.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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