Has anyone migraines suddenly changed?

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LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 12/27/2006 1:28 PM (GMT -6)   

Hi everyone,

 

I don’t know if my problem is unique, but I’ve been dealing with migraines since I was 16 years old. (I’m now 23, almost 24).  The problem is that my migraines started somewhere between April and September went from being controllable to controlling me.  I use to be able to just take Zomig (though it was starting to lose its affect) and sleep it off.  These migraines would also only affect my neck and maybe my neck, but not my entire body and they would only last for a maximum of 1-2 days. 

 

In April, I had the worst migraine in my life.  On those famous doctor pain scales it was easily a 12.  However, the Zomig worked, but it was the last time.  July, I had a week long migraine that I was able to beat down with some Zomig and some OTC drugs, but then I realized that I need a neurologist.  (I was only in the area for about a year at that point).

 

My next migraine lasted two weeks.  During these two weeks, I visited my neurologist a couple of times, visited the ER got shots of who knows what types of medicine, got a MRI done, was able to work without drugs, but barely, started Topamax, tried barbiturates, Percocet, and Stadol and finally had to be hospitalized for 5 days to break the pain.  Dilaudid was the only thing that actually took away the pain.  This happened at the end of September beginning of October.

 

Next, my neurologist told me that I have three types of headaches: migraines, muscle headaches due to my neck, and TMJ and they all like to play off each other. Also over this time my Topamax dose kept being upped. Then in the beginning/middle of November I am hospitalized again for a migraine, but this time it is only 2 days.  (I was also sent home from the ER because one of the doctors thought I was a junkie, but that is another story).

 

In the middle of December, I also went through this again, but this time I wasn’t hospitalized.  I had two ER visits, a few days off of work and I was just on a lot of Dilaudid pills.  I quit them cold turkey then experienced the withdrawal symptoms.

 

Overall, now I am more or less in some sort of chronic pain.  My neurologist thinks and now includes rebound headaches into this it is all the heads playing off each other and he is not being proactive enough in finding a that missing X factor.  I’ve been told in the past from dentists that I have TMJ and I know that I have had neck problems for ages, so what is this catalyst that we are missing?  I don’t know how to approach him about this and I’ve attempted to say that we need to be more proactive and he said lets up your Tomapax and get a second opinion.  (At this point my parents were afraid that they were never going to see me alive again).  But the thing is that I actually like him a lot.  He is a nice guy, we get along really well and when I call him through the answering service he calls me back quickly.  I am troubled by that I’m not getting any better.  If anything, I might be getting worst.  And everything we try only works temporary.  For example, we tried trigger-point injections, and it helped for a couple of weeks.  The same with all of the other drugs we have tried.  Plus, I’m always nauseous now (that might be the Topamax) and I can barely eat. To me, he is being proactive to a certain point, but is he being proactive enough?  I have an appointment with him generally once a week (he is very close to work), so I am planning on talking to him.  I just really don’t know what to say.  I also have to admit that I am afraid that may never figure this out.  My mom suffers pretty badly from migraines (not like this, or constantly) and her doctors could never figure out why.

 

Additionally, my quality of life has radically changed in the past few months and now I have to constantly fear if I am going to get a migraine.  Plus my job is in jeopardy.  I really just don’t know what to do anymore.  Fortunately, I have parents and a significant other who are helping and a second opinion at one of the best places around. But I am really worried about why this sudden change and was really wondering if this has happened to anyone else?

 

These are the things that I can tell you.  My triggers for sure are light, weather and possibly cheese. Sometimes highly emotionally charged situations will bring it on, but not always.

 

Things that are not are caffeine, and my cycles. 

 

I appreciate y’all reading.  I must tell you when I found this website yesterday I almost cried at work from relief and the comfort that there are people out there who understand.

 

 


Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 12/27/2006 5:19 PM (GMT -6)   
Hi LadyAislin33,

Welcome to Healing Well. I think we have all been overwhelmed with emotion when we first discovered this site, as it is a big thing to find someone else who can understand what you go through!

Unfortunately this condition has a habit of evolving or changing over the years as we grow older or develop. All changes must be reported to the Doctor. Sometimes when we go through a patch of bad attacks we end up taking painkillers of various sorts for more than two or three days and end up with a rebound headache which in turn we treat, which in turn produces yet another rebound headache, and so it goes on!!!

It is very difficult to break this cycle, but it can be done. My basic rule of thumb would be no more than 2 days in any one week with painkillers especially narcotics!! Non-steroidal anti-inflammatory's are not quite such a problem like Ibuprofen. It is the codeine based drugs like Percocet that usually cause the problems unfortunately. Sadly not all Neurologists recognise this as the problem it is!

Please remember that this is not a medical opinion but drawn from personal experience. Have you seen a Neurologist who is a Headache Specialist? If not, you may find that this would be of real benefit! I have finally been able to do this, and for the first time in 30 years I feel as though I am finally getting somewhere!!!!

Please keep us posted as to how you are getting on, take care,

Ann

mommyto3
Regular Member


Date Joined Nov 2006
Total Posts : 94
   Posted 12/28/2006 8:43 AM (GMT -6)   
Hi,

My migraines have also evolved drastically over time especially the last seven months...I've had migraines for a long time, but sporadically and just took OTC medication for them and dealt with it through my primary doctor--it was never a big deal...What triggered my change in migraines, I have no idea, but I wish I knew--I would love to remove that trigger from my life!!!

Now the migraines rule my life and as you said and can destroy it some days (or at least it is trying its hardest to do that)...I think the fear of them can play a big role also, that is something I have brought up with my doctor in the past, I would wake up throughout the night at various times to see if the pain was there or in dread of being woken up in the morning with a full blown migraine! He took that into account when we did my medications...Also, I have cluster headaches, and those wake you up at various hours in excruciating pain, and that fear was horrific--I just didn't want to sleep!! I take most of my meds before bed and one of them has some sedating effects and probably helps with both the migraines and sleep!

You mentioned that you take Topomax..I also do, but take several other medications in combination with it (3 others)...Maybe, seeing if adding another to Topomax to help control the migraines would help--I don't know if that is an option for you, but may be something to discuss with your doctor--I think the combo is what has helped me...I am by no means advocating as many meds that I am on, I have migraines that cause weakness and clusters, so I take alot of medication.

As Ann said (Ann I seem to be following your posts today), I agree a headache specialist is a great option! I also see one and fully trust him and we are getting somewhere!!

Take Care!

Mr. Christian
New Member


Date Joined Dec 2006
Total Posts : 13
   Posted 12/28/2006 11:41 AM (GMT -6)   
I can't imagine having one of my migraines for more than 12 hours, and you had them for days? God bless and help you. I've had migraines since I was in my early teens, along with depression and anxiety. I will pray for you.
"For the message of the cross is foolishness
to those who are perishing"
                          1 Corinthians 1:18
 
"...the light shines in the darkness,
but the darkness has not understood it"  
                                  John 1:5
 


LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 12/29/2006 10:43 AM (GMT -6)   
Hi Everyone,

Thanks for your replies.

I don't know if he is a headache specialist. I know he personally he suffers from migraines, but that probably doesn't quality him as a specialist. Ann, he wants me on the Ibuprofen like you have suggested and he doesn't want me on the narcotics. He is actually not the one giving me all the narcotics; it is all the hospital visits (they hand it out like it is candy). The strongest medicine he has given me is the Stadol and he prefers me not taking any of them until I truly have too. He tells me to take drug holidays if I can stand it. Though the last time he said that it was a choice between going to the ER or not taking anything. It really wasn't a choice and I hate the hospital.

Is there anything in particular that you look for in a headache specialist? I just knew I needed a neurologist after I knew my medicines stopped working. Beyond that I am kindof clueless of what to look for in a doctor and I don’t know anyone in the area who suffers like I do. The doctor who is my second opinion (that is coming up in a month and half) is way too far for me to visit on a regular basis.

Thanks for the suggestion about adding to the Topamax. I don't think the Topamax is preventing the migraines at this point, but it does help to some degree keep some of the pain down. I wish I knew what my triggers where too. Mommyto3, I am terrible sorry that you are suffering like I am, but I am glad to hear that your combinations are working.

I think what is getting me the most is not knowing or understanding. I was always one of those kids growing up where if you could give me a solid reason for not doing something I would be fine with not doing it. Now, I am in limbo and more or less in pain. This leads me to a precarious situation, because I have loved ones telling me one thing, my doctor telling me another and all I can think about is no more pain (and other side effects) as my evaluation for everything.

Mr. Christian, thank you for your kind thoughts and prays.

To everyone, thanks again for all of your replies. All of them have been really helpful!!!

Please take good care and have a safe and good holiday.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 12/29/2006 11:29 AM (GMT -6)   
Hi LadyAislin33,

Whereabouts do you live? To give you an example the Mayo Clinic have Neurologists who are Headache Specialists. I do not fully understand how the system works in the USA as I am in the UK, but from an obvious point of view I would look at the nearest main teaching Hospital even if that is a long way away, and find out who specialises in what, and go from there.

I hope someone will come along and show me a better way lol!!! Unfortunately it is often the case that we never completely discover all our triggers and therefore it makes it that much harder to treat. There are some for me that are obvious, but then there are many more that are not!!! I have now come to the point that I accept that the pain is going to come no matter what I do, and I just make sure I have my arsenal of pain relief ready!!!

I feel for you, as often our families mean well as they find it so hard seeing us suffering, but they do not realise that sometimes they do more harm than good! Try to gather as much information about migraine and the way it affects you and share it with them, tell them what works for you and what doesn't, be honest! This way at least you will have offered them the best opportunity to learn how to support you best!

Hang in there, take care

Ann

LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 1/2/2007 12:46 PM (GMT -6)   
I live right outside Washington, DC and work in the city and my second opinion is at Johns Hopkins Medical Center. I honestly don't know if there are headache specialist besides some headache clinics.

Thank you for your words of wisdom!!!

Happy New Year!!!

LadyAislin33

awilliams3
New Member


Date Joined Jan 2007
Total Posts : 18
   Posted 1/18/2007 9:58 AM (GMT -6)   
i have been on topamax for aproximately 5-6 years (as you know LadyAislin33), I would suggest giving the topamax a little more time- I can recall it taking several months for it to become beneficial. However as mommyto3 suggested, combinding with other meds can be helpful. Im on imipramine as well- which halp at night- I tend to wake up with migraines and just start vomitting... Like i told you the other night, I would recommend looking for a headach specialist as well. When we were in NC I found that most beneficial- and my migraines decreased after begining to see the specialist (not right away). We tried several meds before coming to the combination im on now. We also did biofeedback, and other treatments were suggested- Botox, hypnosis, etc... although i never did those.
25/F migraines since 6th grade, sleep apnea diagnosed at 16, Ulceriative Colitis and/or Crohn's disease diagnosed at 18 &19, GERD/ hiatal hernia since age 18, tremors diagnosed at 24 (side effect from medication), HPV 2003...

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