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Migraines taking my life away

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Posted 12/27/2005 3:15 PM (GMT -7)
Just wondering if anyone can relate?

STORY: I have had migraines since I was around 12 yo. But they were rare, only 2 a year. Jan '05 I started to have 1-2/week. It the progressed to 2-4/week. At first I was taking Percocets and sleeping in a dark room, with an eye cover, ear plugs and ice bag because this was the only thing that worked. The only triptan I had ever tried was Imitrex, which didn't work. Finally my GP/Gyn referred me to a Neuro. He had an MRI done, and it came back fine. He promptly put me on Topamax and gave me samples of every triptan available (and Migranal). I started the Topamax and increased my dosages weekly, as instruted. And would try a triptan when I got a migraine. I soon discovered that I was allergic to something that was in the triptans. My neuro told me not to take them anymore. I keep taking the Topamax without any improvement (I was still having 2-4/week). Every time I would see him, he would tell me to up the dosage. I would get these 2 day constant migraines that he would prescribe me Predisone for. It would work and break the cycle, but the side effects were horrible. I was growing increasingly discouraged. I was missing work constantly. Fortunately, I had worked there for some time, so they worked with me.

In June, I stopped seeing the neuro. He just wasn't helping at all. My GP/Gyn continued to give me scripts for Percocet and even hinted once at trying Demoral. I was constantly in pain. In August I officially took medical leave. Luckily I have Short Term Disability. In September, she referred me to a Psychiatrist, as my depression/anxiety was worsening. (I have also had this problem since high school.) He diagnosed me Bipolar II (something that I had always wonderered about). My life made sense. He put me on the Lamictal starter pack and I started the slow titration to my target doses which kept changing. Meanwhile, my GP/Gyn got me in to see another neuro, a friend of hers from medical school and a migraine specialist. I was unable to see him until December. I was still on medical leave. I stopped taking Topamax about this time. I was having all the weird side effects and was becoming unable to function at some times. He eventually put me on Paxil, Xanax and Seroquel also.

When I finally saw him, he was wonderful. He was happy that I was taking Lamictal because he uses that on migraine patients. He did want me to up my dose though. Gave me scripts for Gabapentin and Reglan to be used as needed when I got a migraine (with the Percocet although he suggested me switch to OxyIR). The Gabapentin was supposed to put me into a deep sleep (stage 4/5) to 'calm' my brain. Unfortunately, the dose he prescribed didn't work and I was taking up to 10x the amount with no sleepiness. He then prescribed me Lyrica, which I have been taking now for 2 weeks with no improvement.

I am at the end of my rope. Can anyone relate? I am still on medical leave and will be quitting soon due to my husband taking a new job and us moving. At first the GP/Gyn and I contributed the migraines to work situational stress (my biggest trigger), ie - certain situations at work, not the job itself.

I am still having 2-3/week. Pain scale of 8-9. Pain meds no longer working and I refuse to take more than prescribed and often try to make it through without.

Meds I have tried (or the ones that I can think of):
Fioricet/Fiorinal, Darvocet, Midrin, Ultram, Tylenol 3 w/ Codeine, Lorcet, Lorcet Plus, Vicodin (no relief)
Triptans (and Migranal) - unable to take
Lexapro, Cymbalta (both made me dealthly ill), Wellbutrin XL

Currently on:
Daily - Lamictal, Lyrica, Paxil
As needed - Xanax, Seroquel, OxyIR

Thanks for reading, if you got this far!

Jen
Posted 12/29/2005 6:23 PM (GMT -7)
Thanks Beth. I'm slowly losing my mind. I thank God every day that I have my husband because he has been the greatest source of strenght for me. The lasted med that my nuero gave me was Lyrica, of which I can NOTHING on the internet with regards to migraines. So it is frustrating. He is also a neuro that will not prescibe pain meds of any kind. So the last week I have been in a lot of pain since I am almost out (I have just enough for 1 migraine) and my GP/Gyn won't prescribe any just yet because I had 4 mingraines in 5 days and went through almost all that I had pretty quickly. I did type out what I took each of those 4 days so that she will see what I was taking. I don't want her to think I am some drug addict. I know that mose people that have migraines are labeled at that. Just yesterday, my husband caught me in the bathroom pounding my head of the floor trying to knock myself out. I refuse to go to the ER.

Any advice from those with migraines in the pain scale of 7-9 that don't use pain meds on how they deal would be very much appreciated!!

Jen
Posted 12/29/2005 6:47 PM (GMT -7)
Hi Jen,
I am sorry to hear about your near-constant pain. Reading all you have gone through, I wonder if it might not be helpful for you to go somewhere like the Diamond Headache Clinic (I think there are other places that specialize in headaches, I just can't think of any at the moment -- I know the Diamond Headache Clinic is well-regarded) that specializes in difficult headaches. It is in Chicago I believe. They have both in-patient and out-patient programs. I may look around on the internet and see what other places there are. I live in Minnesota and we have the Mayo Clinic -- don;t know if they have a clinic specifically for headaches but they might....Since your symptoms are so severe and you have been on (or do not tolerate) so many medications, it just seems you need some very specialized attention. Hope this helps a little. I;ll look around and try to post again.
Laura L.
P.S. As a physician I must recommend against banging your head on the floor to knock yourself out even though as a fellow migraine-sufferer I definitely understand it....
Posted 1/1/2006 11:08 AM (GMT -7)
The neuro that I am seeing is a migraine/headache specialist. I thought he was a wonderful doctor when I met him - he really knows his stuff. But not being able to take any pain meds to numb the pain is killing me. I have tried every thing that I can find in my medicine cabinet. I had a whole bottle of Fioricet that another doc gave me for headaches but I DOES NOT work for my migraines. I've taken Benedryl to try to sleep - no good, Trazadone to sleep - no good, Ambien - nope. (None of these have ever worked for me before so I should if known they wouldn't now). I need my pain meds! I don't have an appt with my doc for 2 more weeks. And I have 3 Oxycodone left that I refuse to take because it may be my last. And with 2 more weeks left, I'm scared to take it because if I do, I may need it later. I know that banging my head on the bathroom floor is stupid, but when you are in so much pain, you just don't think clearly. All you want is the pain to be gone.

I'm scared to death about going to the ER. I took a really good friend there once for his migraine and they treated him so badly I vowed never to set foot in there again.

Why do doctors treat people with migraines so badly? It's like they think we are making all up. In the past I would of never wished a migraine on anyone, but sometimes I do with think about it with some nurses and docs because of the way they treat me.
Posted 1/1/2006 3:56 PM (GMT -7)
I am sorry that you are going through this. I know how it is not to have pain meds around when you have migranes. My doctor has only prescribed me midrin which does NOTHING for me. I have tried the triptans also but they do nothing for me as well. I usually end up in the ER when my migranes get to an 8-9 but like you said, I get treated very poorly. I get very high anxiety when I have to go. I have problems with anxiety in the first place and it only gets worse when I know how I am going to be treated by the docs.
Posted 1/1/2006 4:25 PM (GMT -7)
ER docs are the worse. At least my previous neuro's philosophy was to keep me out of the ER and if they meant giving me pain killers, he would. That was the only good thing about him.

I know about getting high anxiety. When I get a really bad migraine, my anxiety skyrockets, which makes me feel worse.

I have written down all my docs phone numbers, what my diagnosis are, what meds I am taken in mgs and my allergies just in case I have to go to the ER (or my husband takes me against my will - which he has threatned) so that they will have it in case I can't tell them.
Posted 1/1/2006 9:04 PM (GMT -7)
Dear Jen,
I did not mention that I am a (former) emergency physician, did I? Although I must admit that I do not think I was like some of those you describe. I took my oath to relieve pain very seriously....the nurses nick-named me the "morphine queen," because I gave it in appropriate doses (which to the nurses seemed large) to patients who needed it. I took care of many migraine patients (and this was before I had migraines myself) and generally figured it was my job to make sure nothing dangerous (i.e., something other than a migraine) was going on, and then I usually listened to them about what relieved their pain. I guess there are some physicians who begin to think that people with migraines are drug-seekers, but the patients are doing so appropriately: they are seeking adequate pain relief. Pain is woefully undertreated in EDs and in the hospital itself. It is something that is slowly changing but most doctors out there are still the ones who don;t want to give drugs to an "addict" or get into trouble for handing out too many narcotics (an unfounded fear and there have been studies to prove it.) But what can I say. I have only been to the ED once with a migraine and I was made to suffer through 500 mg IV Depakote (which I knew would not work because I had just read a study on it), then Reglan and Benadryl which helped a little, and after all that they finally gave me some morphine which is what really helped....But the whole process took several hours....So I understand. Not all doctors are bad about pain treatment, but you are right, in general things are not good in that area. Sometimes it helps to go to a pain clinic (if you have one in your area). Sometimes those doctors are a little more willing to give you what you need and keep you on a schedule. But it varies from doctor to doctor. Sorry things aren't better.
Laura L.
Posted 1/2/2006 5:40 AM (GMT -7)
Thanks Laura for that excellant description. I have been having these migraines since I was 12. And up to a year ago, I only got them occasionally. I don't know what has happened, other than the amount of stress I was under (and stress is a trigger of mine). I know what works and what doesn't. But most docs don't want to be told what to give you. So they waste time giving meds that just don't work before finally giving in.

This reminds me of a conversation that I had with my cousin over Christmas. He asked how the migraines were and I told him the same. He asked what I was taking and I told him Oxycodone at the moment. His face lite up. He said "wow, that's some good stuff. I had percocet when I had my knee injury. Isn't it great? I love the feeling that you get when it starts to kick in". I didn't know what to say. I have never had that experience. When I take it, I feel relief, not this euphoric feeling that he was talking about. But that makes me understand why some docs are reluctant. But I'm not using it for that feeling, I'm using it for relief. The pain meds don't take the migraine away, but they do numb it so I can endure it.
Posted 1/2/2006 1:59 PM (GMT -7)
Got a migraine this morning. I called my neurologist - they are off today - and I spoke with the neuro on call and he couldn't do anything for me since I wasn't his patient and he didn't have my chart. He suggested that I go to a Urgent Care. I went to the one that is associated with my doctor so that they would have all my info. They were sooo busy. When I finally got in the nurse was wonderful. I can't say the same for the doctor. I was in pain, alot of pain. I have written down all my info, but she kept asking the same questions over and over. No, I cannot take triptans, any triptans. I know what works and what doesn't. She actually had the notes from my neuro so she knew what the plan was but she insisted on me telling her. I couldn't barely talk. This is the reason that I don't want to have to go anywhere when I have a migraine. She ended up giving me a Toradol shot, which does nothing and gave me a script for 8 painkillers. I'm to call my neuro tomorrow. We have to have a talk. While I appreciate him trying to find a preventative that actually works and will cut down the amount of migraines I have each week or stop the completely, what am I do in the meantime? I can't afford to go to the ER or Urgent Care 2-3 times a week. My husband is really worried. I think he is scared that I will do something stupid because I'm in so much pain and I just want some relief. And I don't blame him. When you are hurting, all kinds of thoughts come into your mind.

I really want to get off this Lyrica. I have not had any changes in the amount of migraines and I have been eating like a horse - really craving sweets. My weakness - almond M&Ms. I can't find anyone else that is taking this for migraines.
Posted 1/2/2006 11:33 PM (GMT -7)

Hi Jen,

I'm sorry about all of the pain you're in and the trouble you're having finding a solution. I can empathize. I was at the same point as you a year ago when I went on disability. I was off for six months and then returned to a more junior job closer to home. Here are a few things that my neurologist has tried / suggested that your neurologist might consider:

Ativan / Toradol / Narcotic - The Ativan relaxes me to enable me to sleep, Toradol relaxes my muscles and Narcotic (T3s) cover the pain. I take one Ativan, 2 Toradol and 2 T3s. I only take this in extreme circumstances because of the possibility of rebound headaches with T3s.

Gravol / Dramamine - to help me sleep with pain killers.

Botox - Relaxes face muscles that may trigger migraines.


Some natural remedies are exercise, especially swimming, warm baths, and relaxation exercises. I also have hobbies that don't take a lot of concentration but keep my mind off the headaches.

Good luck.

Posted 1/3/2006 12:59 PM (GMT -7)
Thanks Nicky. It is encouraging to hear someone that was in a similar place and has had an improvement. I have been out of work on disability for about 4 months now. I have made the decision to not return to my job. The work environment was just causing too much situational anxiety which in turn aggravated my BP disorder and a increase in migraines. But at least I know that I am not alone. I am going to make the recommendations to my neuro when I see him next week. His reluctance to prescribe any pain meds is something that we will definately have to discuss. At least I have enough pain meds for about 3 migraines, if they aren't too bad. So crossing my fingers that that will be the case.

I appreciate all the replies and encouragement and ideas. Thanks so much!!!
Posted 1/3/2006 2:18 PM (GMT -7)

Hi JenMcD - I can completely relate to your story. I am new to this forum. I joined because I don't know where else to turn. I am so desperate for help right now, and I have no one to go to. I have suffered from migraines/chronic headaches for the last 10 years. Over the past year, they have turned into daily chronic headaches, most of them migraines. Some are worse than others, but I honestly can't remember the last day I didn't have a headache. I was hospitalized February of 2005 for a migraine that lasted two weeks straight with no relief, and treated TERRIBLY by the way. Ever since I got out of the hospital things have gotten worse. I had headaches so bad that I was on 4 10mg/500 mg Hydrocodone a day. I was also taking Ambien at night to sleep, because the pain was so bad I couldn't even go to bed at night. Unfortunately, the Ambien had a very bad effect on me, and caused me to be in a really bad car accident, and I ended up in the hospital last August. Immediately following, I ended up going to rehab because they decided I had to get off the pain killers and couldn't do it on my own. The thing people didn't realize was that the only reason I was taking the painkillers was because I was in so much pain. I haven't taken any painkillers since August, but I still have the daily headaches. The bigger problem now is that even if I need painkillers, I can't get them, because now I am looked at as having an addiction problem. This is a problem for me because I can't find anything else that works. Headaches are literally ruining my life. I don't know how much more I can take. I go to bed at night with a headache, and I wake up in the morning with a headache. I won't accept living with these. I have seen so many doctors over the years, and none of them have been able to help me. I think the doctors I have seen have actually made the problem worse. I have had multiple MRI's and CT-scans over the years, and all of them came back normal. I am still left with the uncertainty of not knowing what is causing these headaches. I am so miserable I can barely concentrate on anything. I am afraid my work is being compromised because the headaches rule my life. I have taken every triptan on the market, and Relpax is the only one that has worked for me, but insurance only covers 6 tablets a month, and I get a headache every day, so you can see what the problem is. The only medicine that gets rid of the pain is hydrocodone. It doesn't get rid of the headache, but it at least provides relief for a short period of time, and for people who suffer from migraines, ANY time without a headache is a good time. I just don't know what to do anymore. My family doctor is worthless to me. I have an appointment scheduled to see a new neurologist on February 2nd, but I am not very hopeful because I have never gotten any help from a neurologist. I am tired of being looked upon as someone who is only out there to get medicine. I am only out there to get RELIEF. I don't know why that is so hard for people to understand. I don't want to be treated badly anymore. I want to get help, and I want to get rid of the headaches. I am only 26, and I really cannot see myself going through life this way. I have no quality of life because of headaches. I am in desperation right now. If anyone out there has any information that can help me, I would be truly grateful. I am so miserable. Pain will make you do crazy things. I have been in so much pain, that I actually wanted to fall down a flight of stairs so I would have some other pain than a headache. That is how bad the pain is. I don't think a person should have to live like this.

Help anyone???? I am going on day 10 with the same headache, and nowhere to turn....

Posted 1/3/2006 7:09 PM (GMT -7)

Hi Jen,

Perhaps asking the neurologist what he expects you to do when you have a migraine if he won't prescribe pain killers. It just makes me mad when doctors won't prescribe necessary medications for pain.

Good luck!

Posted 1/3/2006 7:41 PM (GMT -7)
EE - I'm so sorry for all that you are going through. I am beginning to think that my doc has labeled me as an addict. When in fact I'm actually using less pain medication than I did at the beginning of the year because I have learned other ways of dealing with less debilitating migraines and saving the prescription meds of the really bad ones. It is so frustrating. I, like you, just want to lead as normal life and be as pain free as possible.
Posted 1/4/2006 1:06 PM (GMT -7)
A bit of good news. I had to go the doctor today for a sore throat. I have had it for a few days but yesterday it got really bad. While I was waiting in the waiting room, I started to have a migraine (aura which usually gives me 30-45 minutes before the pain starts). The FNP that I always see checked my throat and said it was really red and gave me a decongestant (I was in there about 3 weeks ago with the same thing so she didn't want to give be antibiotics again). She asked me about the migraines, so I gave her the short version of the story. She wrote a script for me for Percocet (she has migraines so she can relate she said). So I am set for a while. That is a huge burden lifted off my shoulders.
Posted 1/11/2006 8:59 PM (GMT -7)
Saw my neuro today. He gave me the ins and outs of DEA monitering. And I understand - if I went to school as long as docs have too, I wouldn't want my license snatched away either. He did write me a script for Vicaprofen and wants me to up my dose of Lyrica to 300mg.

So frustrating.......
Posted 1/18/2006 11:48 PM (GMT -7)

Hi Jen,

Regarding getting one's DEA license yanked because of prescribing too many pain killers: that almost NEVER happens>  The kind of doctors it happens to are ones who write narcotic prescriptions indiscriminately without documenting an indication for them and who give obviously massive quantities that one person could not use (i.e., could sell).  In all my years of practice (including med school more than 20 years) I have never even heard of ONE doctor having his or her DEA yanked over prescribing too many narcotics.  What I have seen (and in spades) is the chronic and recurrent UNDERTREATMENT of pain in all kinds of patients, from headache patients to patients with broken bones to cancer patients!!!  So I would not buy that DEA stuff -- it is just an excuse (or maybe the poor guy really believes it) -- but undertreatment of pain is a much bigger problem and there have even been lawsuits (generally by inpatients, though not always) by patients charging their doctors with undertreating their pain.  Unfortunately undertreatment is sort of the standard of care (isn;t that a sad state of affairs) but I know some of these suits have been won.  So MDs are going to have to watch out at some point....They won't be able to get away with undertreating pain forever (or so I hope).  By the way, it is even harder to get pain meds from an MD if you ARE an MD because they are afraid of creating an addicted MD......You  gotta love it.

Laura L.

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