Need Advice on Migraine Treatment

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Amoria
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/12/2009 6:07 PM (GMT -6)   
Hi, New here.
I am in a huge dilemma. First off, I was put on Topamax for my migraines years ago and it worked really well but I started to get high pressure in my eyes and was taken off of it. Well I went back on it with a different doctor, the one I see now, and I started getting visual side effects and facial numbness/tingling amongst other things. I went and saw my ophthalmologist who said I needed to be off the medication (also found optic nerve swelling). So I tapered off of the medication. Well I have tried just about everything preventative for the migraines and they are back real bad. The neurontin was a no go, the depakote was no go and the notriptyline interacted with one of my other medications causing muscle jerks but did not work anyway. I have been taking Midrin for a long time to stop the migraines and way back in the day before they were daily it worked real well to stop them. I should also mention I already take Toprol for my hypertension.

So anyway the migraines/headaches are daily now and almost at the same time every day. Nothing seems to make them go away. I am stuck with Tylenol as I am allergic to NSAID's and the Midrin is not working long enough. It provides short relief. I am on Zonegran now as a preventative and so far it is not helping either. My pain now sticks to one side of my head and my nose runs often. My old headaches were regular migraines without aura. I don't know why things are changing. I have also been plagued with sex headaches (migraines) that have started about a little over a month ago. I feel like I am in headache hell.

I feel like my neurologist is doing nothing to help me. I have seen him once this year for less than 2 minutes because I wasn't "scheduled to see him" and have only seen the nurse practitioner. They have done two MRI's and one MRA which they stated were normal other than an incidental hemangioma found on my cervical MRI. I really need someone who is going to help me as I feel they aren't. There HAS to be something they haven't done that can be done. I am considering changing neurologists especially because I never get to see the actual doctor.

Anyone have any words of advice or help for me? What would you do? Thanks!

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 8/12/2009 6:40 PM (GMT -6)   
Did your visual disturbances stop once the Topamax left your system? Also how many times do you think you take Midrin or Tylenol each week and at what dose? You've probably been told this before but using analgesic medications more than a few times a week can perpetuate your headaches or even transform episode headaches to chronic ones.

Have you tried any neuroleptic medications as abortives? Also, what about the more common triptans (Imitrex, Maxalt, Relpax, etc) or DHE?

And what about interventional treatments? Any outpatient infusions or planned hospitalizations for IV DHE or Lidocaine? Have you had nerve blocks or trigger point injections? Or Botox treatment? Any alternative treatments like biofeedback, acupuncture, physical therapy, chiropractice, etc? Have your tried any psychological treatment (medication or therapy based)? I don't ask this to imply that you have any sort of psychological problem but because psychological treatment often compliments other headache treatments.

Also have you been able to isolate any major headache triggers? Keeping a headache diary or log can help with this. Additionally, making dietary changes can help you find whether any foods might affect your headaches.

Sorry to ask so many questions but I really need a better idea of your situation to give good advice. From what you posted it sounds like you've had a rough time and have tried a lot, though it also sounds like there are a lot of things that you haven't tried. Let's see if we can help you!

Regards,
Ben
DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Concerta (Methylphenidate), Clonazepam, Wellbutrin XL, Namenda, Rozerem, Magnesium (1000 mg/d), Riboflavin (400 mg/d).

PRN: Ketamine nasal spray, Oxycodone, Toradol, Celebrex, Haloperidol, Lodine, Migranal, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Reglan, Ambien CR, Provigil, all triptans


Amoria
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/12/2009 7:16 PM (GMT -6)   
Yes the visual disturbances stopped once I was off the Topamax. I take the Midrin about twice to three times a week at most. I was told by the nurse practitioner it would begin to stop working if I used it too much so I will sometimes just deal with the pain and go without the med. I very rarely use the Tylenol now because it just doesn't work, so I would say once a week I give one extra strength dosing a shot to see if it will work. I am unsure of the dosing of my midrin, the script label does not specify each drug ingredient dosing but does say I am allowed one per headache and up to three in a 24 hour period. I generally take one and sometimes a second one, if they don't work I give up on the Midrin. I don't know if that is fair for me to do so but that is how I handle it.

The triptans like Zomig I was told I could not take due to my hypertension. I found this out after using Zomig before I was diagnosed with my hypertension and I had an episode of chest/jaw and arm pain the second time I used it for a migraine. The Imitrex never worked when I tried it many years ago and the new Imitrex drug derivative that came out has the NSAID which I am allergic to. I think I had tried Relpax and got no response from it at all.

No Botox, No trigger point injections and no nerve blocks have I ever tried. They have never been offered to me. I have tried physical therapy which seemed to aggravate them worse. Actually I do have psych treatment. I am on medication currently. The only trigger I have noted is if I am just starting to doze and fall asleep and someone or something wakes me up even gently it is like something explodes in my head and an instant headache/migraine begins. I don't have the greatest of sleep habits as some days I suffer from terrible insomnia and then some days I sleep for very long amounts so that could be a contributing factor. Other than that I can only see diet as being another trigger. I will use your suggestion and keep a journal for awhile and see if I can figure out what triggers them. I am on quite a few medications for different illnesses but have been on most of them a long time before the migraines got this bad. So I am not sure they are related. My only new medication is the one to help the migraines. Also some vitamins the doctors have put me on (prescription and non)

I hope this helps. Thank you for responding!

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 8/12/2009 8:57 PM (GMT -6)   
Yeah, I imagine taking vasoconstrictive drugs like triptans and DHE wouldn't be too safe with hypertension--didn't really connect the dots there. Neuroleptics could be helpful and I don't think they'd cause any blood pressure problems. I've had the most success with Haloperidol and some with Zyprexa. I've also tried Thorazine and Droperidol (and probably some others...). They tend to be sedating but can be quite helpful as abortives or rescue medications (Droperidol is administered through injection and it'll usually knock you cold for hours, but the others aren't as potent).

Your mention of a trigger related to sleeping/waking is interesting. A former neurologist of mine was very concerned that my headaches might have been aggravated by sleep problems (my sleep habits have been terrible for most of my life and I've struggled with insomnia also). So I was referred to the sleep disorder center at a local hospital and I've had several polysomnograms (overnight sleep studies) since then. Even though it didn't end up being a solution for me, considering your poor sleep quality and waking-related headache trigger, I think that seeing a sleep disorder specialist could be a good idea.

What sort of neurologist are you seeing? Considering the treatments that you've been offered it sounds like an educated neurologist who probably doesn't specialize in headache treatment (I'm guessing). With how much your headaches have been bothering you I'd really recommend trying to see a specialist. If there's a headache clinic in your area that's even better. In either case headache specialists have more experience and (more importantly) have a lot more resources at their disposal to get your headaches under control. If you need help finding one let us know.

Ben
DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Concerta (Methylphenidate), Clonazepam, Wellbutrin XL, Namenda, Rozerem, Magnesium (1000 mg/d), Riboflavin (400 mg/d).

PRN: Ketamine nasal spray, Oxycodone, Toradol, Celebrex, Haloperidol, Lodine, Migranal, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Reglan, Ambien CR, Provigil, all triptans


Amoria
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/12/2009 10:44 PM (GMT -6)   
Won't go the Zyprexa route but I never would have thought Haloperidol would help nor Thorazine. I have never heard of Droperidol. I don't mind the sedation if it is temporary to get rid of the headache. I have been on similar medications to those before long term and not on an as needed basis for psych condition. I did have one sleep study a few years back but at the time I was given Lunesta and was doing a little better with my sleep habits, the doc I had been seeing was concerned with apnea I think and RLS. Turned out I just snore quite a lot and have several hypopneas I think they are called but it was ruled no apnea. I think I should really take that study again and it was suggested on the sheet that I take a daytime test for narcolepsy. I know my neurologists office sets up those studies all the time. Mine was done at a different place before.

I think the neurologist I am seeing is a general neurologist. Upon checking my insurance list there are no vascular neurologists within 100 miles that my insurance covers. My insurance states that as someone who specializes in strokes, migraines etc. Do you think seeing a pain management specialist would be worth my while? There are a few of those nearby. I already do have an inflammatory arthritis which causes me pain but is being treated so-so. I actually have more pain from my migraines than my arthritis currently. I just don't want too many doctors, I already have a bunch of them. I see a gastroenterologist, a psychiatrist, a neurologist, a rheumatologist, a gyn, and a primary care doctor. It is so frustrating sometimes.

Generally the best relief I get is usually when it gets so bad I go to the emergency room and they give me a shot along with the shot of phenergan. I always forget what they give me when I go. I remember one time though they made me sit and wait for about three hours before calling me back to give me something and it was real bad that night. When it gets real bad I get weird, agitated, start crying and can't sit still. So what do you think about the pain management specialist considering the situation and all I stated above? I just don't think the neurologist/nurse practitioner I am seeing now is going to be able to help me much more. Maybe if I saw the doctor himself I would get better results I don't know but he is like nonexistent there.

tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 8/14/2009 12:42 AM (GMT -6)   
**butting in** :-)
I am so sorry to hear about the situation with your neurologist. I hate when we pay to see a doctor and end up seeing everyone BUT the doctor. Very frustrating.

I agree with Ben and his posts. Sometimes he can say the things I am thinking, only better.

As for my personal experience, I have been seeing a pain management specialist (After many years of what you describe) and I have had a lot of success with my PM doctor. They offered botox (denied by insurance), they work with different medications, I have had nerve blocks, radiofrequency lesioning and am going to have a spinal cord stimulator. I guess what I am saying is that, in my case, my pain management doctor seems more interested in finding relief. I realize some of these things aren't solving the root of the problem-but I take what I can get.

If I were you I would SPECIFICALLY ask to see the neurologist and give them one last chance...and then start looking for other options if you dont feel like you are getting anywhere with them. Life is too short and you are having too much pain to continue on the same path.

Good luck and keep us posted on how things are going!!!
Sara-Migraine/Headache Forum Moderator
Battling headpain for 17 years.
DX: occipital neuralgia-radiofrequency nerve ablation every 6mo
 
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SMP86
Regular Member


Date Joined Jun 2009
Total Posts : 20
   Posted 8/16/2009 4:49 PM (GMT -6)   
I don’t know if someone already said this or if you have this checked out.... but you said your optic nerve was swelling? that could be a sign of something called "pseudotumor cerbi". It’s an unusual condition but one I had when I was little. (I also just watched an episode on Mystery Diagnosis with someone who had it!) When I was seven years old I started getting really bad migraines that were constant and as it turned out that’s what I had. My doctor 1st brushed it off as just regular migraines that I had inherited from my mother. Many doctors ignore the symptoms because it is uncommon. Normally it occurs in females who are between ages 20 and 45 and are overweight. However I was 7 and an active child when I got it. There are many things that could trigger the pseudotumor cerbi.. from weight gain to medications. It doesn't always show up on an MRI.... the only way to actually test for it is by getting a spinal tap.

I have been in headache hell since May now with headaches almost everyday and now a 3rd doctor since May. My doctor now doesn’t believe im in rebound migraine.... there are lots of debates on rebound. I know someone who takes triptains daily as a "prevention" and live a normal happy headache free life.... Some doctors say its only truly rebound if the medication you take gives no relief. Also if you are in rebound its hard to tell which came first... you could have been having daily migraines that turned into rebound.
Anyhow I like my new doctor and I see him again Tuesday.... if your doctor is not helping you..keep looking! Treating migraines is very complicated because every doctor you meet will have there own opinions about how to treat you. Most people I know who have migraines have more than 1 reason causing them.
feel better!
best!

Amoria
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/17/2009 2:49 PM (GMT -6)   
Well I followed up on that optic nerve swelling with my regular neurologist back in June when I was also referred to a neuro-ophthalmologist. The problem was the appointment with the neuro-ophthalmologist wasn't/isn't until August 25th and I was diagnosed with the condition back in May or June. So I thought my regular neurologist could handle it. After the way they treated me that initial appointment for this problem I don't have much confidence in them. To make a long story short I was treated disrespectfully and was in tears when I left that time. Of course I still continued to follow through with the test they wanted to do and keep going back. They still haven't helped even my migraine issue. The nurse practitioner claims she saw no optic nerve swelling with the light when she looked in my eyes and none was found on MRI so there is not any. I was basically evaluated for MS from what they said. Anyway.. I just got the paperwork in the mail for the neuro-ophthalmologist appointment next week and I am debating whether or not to go. I don't want to waste money and time should it end up being nothing they can help me with but on the other hand what if it is something they find they can help me with?

I did read about the condition you mentioned and I am a woman, 29 years old and overweight. I also am on the prescription lithium which I saw is mentioned as a factor in causing that condition in some cases. I am not sure how recent the head injury would have had to have been but I did have that head injury years ago. My current neurologist had mentioned getting a possible spinal tap but when the decision was left up to the nurse practitioner after the blood work and MRI were done she declined it would be helpful. This past week I had about two free days of pain and the severe head pain was back. I am just sitting here waiting for it to happen again today.

Do you or anyone out there think it is worth it to see this neuro-ophthalmologist? Also has anyone seen any of these doctors at Emory here in Atlanta? If so what was your experience like? I have waited a few months to get in and I am thinking I should stick with it but I am so afraid of wasting everyone's time and money.

Thanks!

SMP86
Regular Member


Date Joined Jun 2009
Total Posts : 20
   Posted 8/17/2009 7:33 PM (GMT -6)   
You defiantly have a complicated case! If it were me I would go to the neuro- ophthalmologist. Mine didn’t show up at first when the doctor looked in my eyes. The swelling was found by the ophthalmologist. They also found a bacteria in my spinal fluid. Long story short my doctors pretty much diagnosed me with everything else under the stars! It was finally an infectious disease expert from Yale; whom my doctors got into my case, which figured out what was going on.

So basically it can take several doctors and time to figure out whats going on. Even he/she does not find anything... I don't think it would be a waste of time. It just rules out another thing and brings you closer to figuring it out. This doctor may be able to recommend another neurologist.

Also, I know how neurologist can be, even ones who specially treat headaches. My dad is a clinical psychologist and works with neurologists and even says how bad there bedside manor is. Many neurologists also have this thought that that pain in an ok thing to live with. Many don’t really understand the psychical and emotional toll it takes on us! I think tysmyboo talked about seeing a pain management specialist and I think that is also a great idea. My new neurologist is a headache specialist who is also trained in pain management and alternative medications. He seems to understand the concept of pain and what it does to ones life. (My old neurologist did not seem to get that... even though he just specialized in treating headaches!)
Hopefully you will find a doctor who has more compassion and wants to commit to making your quality of life better! When you do go into the doctor tell them how much your life is being impaired by this and you need help finding a solution. You like me might need a multi disciplinary approach.

No one knows your body better than you. Doctors honestly don’t know all the answers... even though some act like they think they do. Especially with migraines. A good doctor should give you confidence and act like they want to do what they can to help you.

Lastly, I know you are waiting for your pain to come back… I find myself doing that at times. However, I find it better when I don’t give it power and go out for a walk, take a bath, whatever calms you. I find that helps… even if it comes later I feel like I did something good for myself and stopped thinking about it for a little bit.
feel better!
best!
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