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Old 02-07-2013, 09:23 PM   #1
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New to the idea of PM

I have suffered chronic nearly daily migraine like headaches for nearly 20 years after a car accident this past summer and post concussive syndrome an MRI revealed Chiari for which I was referred to a neuro. I saw him in August and the appt was a joke. He had no experience with Chiari gave me a basic neuro exam and said if it gets worse I can refer you to a surgeon

I currently take 100 mg of topamax as a preventative, 50 mg pristiq for depression 100 mg levothyroxin and alternate 1000 mg tylenol and 800 mg ibuprofen while at work then have 10 ml stadol inhaler for when I come home. Some days I can't work with the migraine and end up in the clinic for a shot of torodal because taking the day off work isn't feasible. I literally have 20-25 headache days a month.

I am seeing a different neuro later this month as the headaches are are becoming progressively stonger and more debilitating so my question is having been through all the traditional and non-traditional methods for managing what have been considered migraines what options do I have because brain surgery does not jump to the top of my list of things on my bucket list

 
Old 02-09-2013, 11:48 AM   #2
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Re: New to the idea of PM

Quote:
Originally Posted by tearsnfears View Post
I have suffered chronic nearly daily migraine like headaches for nearly 20 years after a car accident this past summer and post concussive syndrome an MRI revealed Chiari for which I was referred to a neuro. I saw him in August and the appt was a joke. He had no experience with Chiari gave me a basic neuro exam and said if it gets worse I can refer you to a surgeon

I currently take 100 mg of topamax as a preventative, 50 mg pristiq for depression 100 mg levothyroxin and alternate 1000 mg tylenol and 800 mg ibuprofen while at work then have 10 ml stadol inhaler for when I come home. Some days I can't work with the migraine and end up in the clinic for a shot of torodal because taking the day off work isn't feasible. I literally have 20-25 headache days a month.

I am seeing a different neuro later this month as the headaches are are becoming progressively stonger and more debilitating so my question is having been through all the traditional and non-traditional methods for managing what have been considered migraines what options do I have because brain surgery does not jump to the top of my list of things on my bucket list
Dear tearsnfears, There are neurologists that limit their practice to headaches only & if i were you that would be where i would start. The dr that you see now that prescribes your medicine have you spoken with him about taking so much tylenol & ibuprofen? I have migraines & i take prodrin for them & it works without making me sleepy. In answer to your question about what options are open to you i would find a headache specialist & let him re do all the diagnostics & hopefully new treatments & new medicines can be given that are specifically for the prevention & treatment of migraines. Also, i once had my gastroenterologist prescribe toradol injections to be given at home for severe back pain i had ulcerative colitis & couldnt take NSAIDS orally so thought maybe injections might work but i couldnt tolerate the injections either but i did have them prescribed for home.

 
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Old 02-09-2013, 07:28 PM   #3
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Re: New to the idea of PM

Unfortunately, I have been unable to find anyone that specializes in headaches only within 500 miles. I spoke with my PCP this week and we are running a full blood panel to check my liver enzymes. I am not familiar with the medicine that you are on but when I looked it up it seems very similar to several that I have been on in the past. There are very few migraine meds that I haven't exhausted in the past. I was not aware though that torodal could be prescribed for at home injections. this would certainly make my life easier and cheaper than trips to the doctor when I need them.

I certainly hope this new neurologist will do more than that last which was spend 5 minutes with me test my reflexes and balance and tell me I just had to live with it unless I wanted to be referred to a surgeon.

 
Old 02-09-2013, 08:18 PM   #4
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Re: New to the idea of PM

Sorry you are struggling. I can relate to your pain as I have had the same headache for 7 years. Working is definitely tough. If you have tried & failed years of standard treatments and respond to short acting narcotics, I'd see a pain management specialist to see if long acting narcotics could be a good option for you. Its been the only thing to provide me any significant lasting relief.

Agreed you should see a neuro who specializes in headaches if you haven't already. There are also some big name headache clinics that might be helpful, if only for a consult to bring ideas to a home doctor. You definitely want someone more familiar with Chiari.

However, it can come at a cost. I've never been able to replicate the relief I got in the beginning, due to tolerance (you require higher doses to obtain even close to the same relief). Tolerance can build quicker for some folks than others, especially those who are young. I started on the pain meds at 19, so no wonder.

Sounds like you also need to try more abortives, assuming you haven't exhausted all those, but that can be tough with so many headache days a month (doctors typically limit those to a couple days a week to avoid rebound, but for someone with daily pain, I think that is a moot point). Triptans, ergots, etc.

Maybe even Torodal injections to have at home (I have these, as well as a new nasal spray form called Sprix). The Sprix actually works better...my pain dr said that many headache patients say this...something about the med going closer to the pain or something.

With pain management, its common to have a long acting med plus a short acting med to take as needed. 100% pain relief isn't reasonable, but some patients can reach 50%. Then, when their pain spikes, they can take their short acting med to try ti get it back to baseline. Best relief often comes with a combo of treatments, such as both narcotic and non-narcotic meds combined with alternative therapies or injections. Best wishes.
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Old 02-09-2013, 08:51 PM   #5
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Re: New to the idea of PM

Did you ever have any success with midrin? It worked like magic for me but it is not manufactured anymore. Prodrin is the same as midrin but without butalbital, a barbituate, so it was removed from the new formulatiom but thankfully prodrin works. I am allergic to imitrex & the others like it, tryptans? It gave me coronary artery spasms. I had to use stadol nose spray for ulcerative colitis pain because i wasnt absorbing & that medicine made me feel awful. I think kate is right, if you cant find a headache specialist then a pain management dr might be a good idea, they treat all kinds of chronic pain & probably have alot of headache patients. Please let us know how you are doing, we will be here for you!

 
Old 02-10-2013, 09:29 AM   #6
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Re: New to the idea of PM

Hi TearsnFears, I would still consult with a neurosurgeon regarding the chiari malformation. The only point in seeing a neurologist for chiari would be if the chiari was causing some type of seizure and your not a candidate for surgery and you needed a seizure med. My wife has chiari and after a car accident and suffering whiplash it sent her chiari over the top where she was having abscant seizures, She would basically walk into the other room and space out anywhere from a couple minutes or untill I went to go find her, Fortunately her chiari wasn't significant enough to go through with a pretty invasive surgery and the seizures dissapaited about 9 months later. When it comes to chiari and having surgery it all depends on how great the malformation is and if it prevents spinal fluid from circulating and how far down the brain is pulled into the base of your skull. It may potentially be the cause of the headaches too so I would get back on the path of finding a NS that is familiar with the surgery. If he says it will help with other issues but not your migraines then it depends on how severe the other issues are and can they be resolved some other way. Their are PM docs that specialize in headaches, neuros dont generally tend to be too agressive if they havent specialized and been board certified in pain management within the neurology field. Their are only 3 board certified specialties in pain management, Neurology, Physical medicine "Physiatrists" and Anestheselology. Again it's a sub specialty within those communities. Anyone can practice PM and pass out pills but with something they havent been successful at managing for 20 years, I would look for a specialist.
Good luck, Dave

Last edited by Shoreline; 02-10-2013 at 09:33 AM. Reason: grammer

 
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Old 02-10-2013, 12:48 PM   #7
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Re: New to the idea of PM

thank you everyone for the advice. I did have good luck with midrin 10+ years ago but before they pulled it really from use I had started having break through pain and it losing effectiveness. I have been through all the triptans. They tend to work for about 6 months to a year for me before they stop. I have found a Chiari specialist in Denver that I have been considering trying to get in to see but my work stituation is relatively unstable so my concern is that I would schedule an appointment which tends to be 6 months out and by the time the appointment comes I will be unemployed or uninsured.

I will keep trying to find someone that can help me with this and all of your advice is a great place to start. Thank you its nice to know sometimes that I am not the only person struggles with pain on a nearly daily basis.

 
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Old 02-10-2013, 01:44 PM   #8
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Re: New to the idea of PM

I don't see any reason not to schedule an appointment with the Chiari schedule. Worst case you have to cancel (typically only required to give 24-72 hours notice; double check in advance). I'd suggest a cancellation list, but MO to CO isn't a trek that could be done last minute.
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Old 02-10-2013, 07:29 PM   #9
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Re: New to the idea of PM

I have thought about the cancelation list but your right, the trip to denver is about 9 hours longer if the weather would be bad I guess the reason for not just going forward with scheduling the appt is that if I do I have to acknowledge that there really is more to this than just a diagnosis I have to face the condition head on and accept the reality that nothing may ever cure the pain or take it away completely

 
Old 03-06-2013, 09:04 PM   #10
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Re: New to the idea of PM

I had my appt with the new neuro last week. Some good news but a lot of the same. I understand that most people really don't comprehend that a headache can be debilitating but some times I get so frustrated. She prescribed torodol for at home gave me samples of zomig nasal spray to try and wants me to consider Botox injections as an abortive since the Topamax seems to be failing. The problem with thenbotox is she told me outright not all insurance covers it, the meds alone are $2,000 per round of treatment not including the cost of the office visit or the 30 injections have to be repeated every three months and often don't even start to show significant relief until the third round of treatment. As for my chiari she looked at the MRI and said she doesn't believe that my headaches are related based on the size of the chiari.

Some days I just want to cry because I feel as though I will never have a normal life without pain that others enjoy, my kids suffer because so many days I come home from work and all I can do is lay in bed and pray the pain will go away

 
Old 03-07-2013, 07:39 AM   #11
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Re: New to the idea of PM

Dear tearsnfears, My kids were the exact reason I started long acting timed released narcotic treatment for severe debilitating back pain through pain management. I was so very weary of the constant pain, inability to do things or mostly trying to do activities, homework,, etc in pain with the short acting narcotics(stadol, hydrocodone) making me forgetful, "affected". When i started long acting narcotics that kept my blood level of medicine constant because the pain was constant, out of control, my life changed. I could not feel the medicine at all except the pain relief, Mom was up & functioning & not crying & not sleepy, it was like a miracle to my family. I hope that you do this well on your new meds & if you can get the botox that it works for you. Has the neurosurgeon evaluated the MRI yet? If i were you i would see a neurosurgeon because I think they have the most training, education & experience with the anatomy & physiology of the brain & spinal cord to provide a diagnosis & treatment plan whether medical or surgical & determine pain
generator, check the Chiari malformation & determine need for pain management. My children turned out great & yours will, too! But, i had to keep looking & the answer was not perfect but it enabled me to live & get up off the bed & couch because the pain was now managable.

Last edited by gmak; 03-07-2013 at 07:45 AM.

 
Old 03-07-2013, 07:41 AM   #12
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Re: New to the idea of PM

Dear tearsnfears, My kids were the exact reason I started long acting timed released narcotic treatment for severe debilitating back pain through pain management. I was so very weary of the constant pain, inability to do things or mostly trying to do activities, homework,, etc in pain with the short acting narcotics(stadol, hydrocodone) making me forgetful, "affected". When i started long acting narcotics that kept my blood level of medicine constant because the pain was constant, out of control, my life changed. I could not feel the medicine at all except the pain relief, Mom was up & functioning & not crying & not sleepy, it was like a miracle to my family. I hope that you do this well on your new meds & if you can get the botox that it works for you. Has the neurosurgeon evaluated the MRI yet? If i were you i would see a neurosurgeon because I think they have the most training, education & experience with the anatomy & physiology of the brain & spinal cord to provide a diagnosis & treatment plan whether medical or surgical & determine pain generator, check the Chiari malformation & determine need for pain management. My children turned out great & yours will, too! But, i had to keep looking & the answer was not perfect but it enabled me to live & get up off the bed & couch because the pain was now managable.

Last edited by gmak; 03-07-2013 at 07:44 AM.

 
Old 03-07-2013, 04:32 PM   #13
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Re: New to the idea of PM

Tears,
It seems to me that the headaches may be a consequence of the Chiari malformation and if that could be resolved with surgery, why not go that route , rather than to try to manage daily headaches which are impacting your life so greatly? It seems to most surgeons, and especially those who treat these type of problems that if the solution to the problem can be repaired through surgery, then that is the best option, rather than long term management with opiods. Especially since given the number of headache days per month that you are experiencing, it is not a reasonable idea to put off surgery if the problem can be corrected or at the least minimized. There are brain surgeons who deal with and treat chronic conditions and also specialize in Chiari malformations. If I were you, I would at the least consider a consult with a board certified neurosurgeon at the largest teaching hospital in your local area/largest city, and hear them out about your options before taking surgery off the table.
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Old 03-08-2013, 08:56 PM   #14
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Re: New to the idea of PM

I guess I don't feel like I have taken surgery off the table, I have seen two separate neurologist it's and both have said that I am not a candidate for surgery after reviewing my MRI. Maybe I don't understand really how the medically system works but how exactly would I go about finding a neurosurgeon that would even consider seeing me and how would I get my insurance to pay for the consult when two neurologistists have said no? financially I can't afford to see the doctor without insurance paying for the visit I struggle enough paying for my medications monthly. Some days I wonder why I bother even trying to work, why not just give in and become another government system dependent I might not get a pain free life but then I don't have that now.

 
Old 03-08-2013, 09:18 PM   #15
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Re: New to the idea of PM

tears,
Your insurance should cover a visit to a specialist, no matter how many you have seen, given that this is a consult. If you have found a specialist who deals with Chiari, then by all means, make that appointment and even if it means having to wait for the appointment, at least you are doing something proactive to getting yourself on the right track to getting the right or better treatment for the headaches and the pain.
I'm not surprised that neurosurgeons treating headaches told you that they wouldn't do surgery- I wouldn't let them if they don't specialize in your condition.
I realize that the idea of surgery , for any condition is scary, been there myself more than a few times, but as I said, if the Chiari is contributing or even the cause of the worsening headaches, then there isn't anyone better to see than this doctor...and who knows, you may find that there is something that can be done that might either eliminate or reduce the sheer number of headaches and other problems that might all be factoring into your condition.
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