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Need Advice about Chronic Pain

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Migraine Headache
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Posted 8/2/2007 5:21 PM (GMT 0)

Hey everyone,

 

For almost a year now, (it is almost hard that it has been a year), I have been experiencing chronic headaches and some of the most sever migraines that I have ever had.  Right now, I am a bit lost at what I should do.  There hasn’t been a day I haven’t had any pain.  Some days are better than others and then there are those days that I cannot get out of bed.  In January, I even had to quit my job since I was so ill and always missing work.  The pain has overall gotten better, but recently it has been on the rise again.

 

Additionally, through all of this medicine and pain, I have lost 35-40 pounds and I am 24 years old.  When I get a really bad migraine, I become photophobic, nauseas, sometimes dizzy or lightheaded and once I even felt like I was floating. 

 

This is what I am up to:

 

Currently, I am seeing my neurologist every 10-14 days. 

I see my chiropractor twice a week.

I see my therapist once a week.

I have a psychiatrist that regulates my medicine.

 

Today, I just started Lyrica at 75mg twice a day.

I have been on Cymbalta for several months at 60mg twice a day.

I am taking Singulair for my allergies.

Now, I need Seroquel 100mg at bedtime.  I might need to up my dose again.  Also, unless I am truly worn out, I can’t fall asleep without it.

 

I was taking Stadol was a rescue drug, but that doesn’t work.  So now, I am at Perceot.  And when I go to the ER, I get Dalaudid.  It is the only medicine that I have to work for the worst pain.  I have been given Demerol in the past and I need extremely high dosages for it to work and then it wears off quickly.

 

One of my main problems is that drugs loss their effect quickly with me, so we are always switching my medication around.  

 

I’ve also started exercising more, attempting to be more active so I am not depressed (which started because of the pain), and I am also looking for a part time job to attempt to regulate my life.  I even started attending a mediation group and looking to get back into yoga. 

 

I’ve been on a ton of medicine (like Topamax which messed with my head after awhile) and even done the IVDHL treatment.  The treatment did really help for a couple of months, but now my head is certainly getting worse.

 

I just don’t know what to do anymore.  I am seeing a Johns Hopkins more or less specialist at the end of the month (he deals with %75 of chronic head pain), but I am starting to feel that I am at my wits end.

 

Here are my questions:

Has anyone tried biofeedback?  Does it work?

Currently, I am reading Jon Kabot-Zinn’s book Full Catastrophe Living.  Has anyone else read it?  If so, what are your thoughts?

Has anyone tried the vitamins/herbs (like B2)?  If so, have they helped? 

My Hopkins doctor suggested that since I have pain everyday that the solution might be getting my regular neurologist to get me into a full time clinic, like the Diamond Headache Clinic in Chicago.  Does anyone have any information about these clinics? 

Also, my father would like to know if there is any doctor in the country, who would you see?

Or if you have any other suggestions, I would be very happy to hear them.

 

Thank you for reading.  I hope everyone is having a pain free day.

 

Take care,

Michelle

Posted 8/2/2007 7:33 PM (GMT 0)
Biofeedback's effectiveness is largely influenced by the manner in which your headaches form. The main method is a way to lower muscular tension and heart rate, while raising skin/body temperature--the effect is that your body becomes relaxed. If you benefit from meditation or just feel progressively more muscularly tense when your head pain begins (or starts to rise), then it's worth a shot, definitely. For me, I can become a little more comfortable during bad headaches--not the desired effect exactly, but it still helps. Again, it's a lot like some forms of meditation.

I've not experienced any relief from supplements or herbal remedies, but you may want to try. I've spoken with people who have gotten a lot of relief from B-vitamins, CoQ10, and Magnesium. I'm a little skeptical about feverfew, but it's not expensive, so maybe you'll find it worth a shot. Other things I've heard some positive feedback about are 5-HTP, SAMe, mangosteen extract, and vitamin C. Make sure to talk to your doctor (or a doctor who has experience with some of these) first.

Of the things that you asked, I think the most important thing is that you probably ought to be seeing a doctor who works in a headache-specific clinic. Hopkins isn't a bad place to be treated (I think they have a clinic (?) http://www.hopkinsneuro.org/headache/). Depending on where you live, there are a lot of options. I go to the Jefferson Headache Center in Philadelphia (http://www.jefferson.edu/headache/home/index.cfm). Probably the best guy to see there (in my opinion) is Bill Young; he's the #2 guy there, so he's tough to get an appointment with, but they're all pretty good. They have headache-specific psychiatry and biofeedback practitioners there as well. Also good is the Montefiore center in NYC. Can't recommend a doctor, but I've been told it's a good place. The Diamond center is also excellent; Dr. Diamond serves as executive chairman of the National Headache Foundation. I'm sure others here can shed more light on these and other headache centers (the only one I really know a lot about is Jefferson), but the important part is to be seen in one of these places. The doctors have a ton of experience dealing with chronic/severe migraines and will be able to treat you in ways that independent (or broader-treating) neurologists can't. I've been going to Jefferson for a year and a half and we've tried a ton of treatments that were never even discussed with my previous neurologist. Also, although I do see an attending physician, I have a team of multiple neurologists, a psychiatrist, and a psychologist that oversee my treatment with continuous communication. Good luck Michelle.
Posted 8/3/2007 3:08 AM (GMT 0)
Oh thank you very much! This is very very helpful!
Posted 8/9/2007 3:29 PM (GMT 0)
Dear Lady Aislin,
In this forum, I'm great relief-no pun intended. I used to have severe migrains-sometimes three a day! I was on Cafergot for a very long time but afyet four years, I was uo to four pills a day and my doc took me off. I eventuall found relief after18 years of terrible blinding pain combing Imitrx inhalers with Maxalt. I was virually cured The headaches sin-ply stopped in 1998. They had started we believe after a bad car crash where the driver's side door where I was, was hit at 45 MPH and I also got three left ribs broken.

Now I don't have migrains anymore but I have realized that when it comes to treating them=docs are virually in the dark. In my cycle of headaches, I tried acupuncture but ran out of money befor being ablwe to complete the threatment the doctor reccomended. My current acupuncturist has studies Chinese medicine and other hjerbal remedies. I gently suggest you find a good acuounturist who is also knowkedgeable about chenese remedies. They've been touted as being the most success*** physicians on the plane-but beware-make a choice wisely, get to know him or her and ger a sense as to whether they know their stuff or not. Mine is excellent but we're in SC here. It's you're close, with his permission I'll pass along his name.

I also got some relief from acupressur-self administered but nut a cure, I would say, just a band aid.

Don't know if any of this helped. If you'r considering opiate therapy, I'm current on OpanER and OpanaIM and am very pleased. I take them for peripheral neuropathy in bot legs due to Aids drug side effects starting in 1994, and for pain due to a broken left hip (replaced) and a severe right groin pull-very painful and very hard to walk. Opana is the best opite I've evr taken-out of the ten or so they put me on through the years. It was just appoved about two or three months ago.

Lady, I hope and pray you get some good relief and let me know about any questions you might have.
Great Relief/Meheroger
Posted 8/17/2007 3:36 PM (GMT 0)
Sounds like a neurologist is a good start. Have you had a brain MRI yet? I had a brain mri done for headaches and much to the doctor surprise it showed an enlarged pituitary gland, I've since had lots of blood work and have high levels of prolactin so the doctor thinks a prolactin pituitary tumor and I'm now on cabergoline and my headaches are not as bad. I wish you good luck and that you can get into a good doctor for help..............Keep us posted okay..........Soft hugz to you...........
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