Migraine

I am new to the group and am so glad to find it. I have had migraines since I was in the fourth grade (will be 50 in May). Like many of y'all, I've had reactions everywhere from I was a nutcase to putting me in the hospital because I might have a brain tumor. My "typical" migraine begins with sensitivity to light, noise, touch and smell. I then begin to to have visual auras - which have lately increased from floaters, wavy lines, photophobia to all of those plus strobing lights. My migraine is usually on the left side (eye) and I frequently have the knife in the eye sensation. I'm nauseous - luckily I don't always throw up - but throwing up usually helps. My migraines usually effect my neck and my jaws as well. The only thing I know to do is to crawl into a cold dark bedroom with ice on my head and neck and just lie there praying to die or to have it over with.

Lately, my migraines may last three to five days and then I have that awful period afterwards where you're afraid to move, to hear or see anything. I had a complete hysterectomy four years ago and thought they might go away to no avail. I've seen and "fired" so many neurologists that one warned me about my reputation in the city. I believe this was the one who questioned whether I really had migraines, asked how I knew I had a concussion about fifteen years ago (car wreck, hospitalization, cat scan, dr. said) and said that he didn't really think he could do anything for me, but he could refer me to a good bariatric surgeon. The stories go on, but that is probably the worst; other than the internist told me that he was there to help people who were really sick.

I have a private practice as a mental health therapist and have missed 26 days this year due to migraines! Not right for my clients; not right for me. I went to see my neurologist on Thursday - A guy a really like and who has migraines himself. But the bottom line of what he told me is:

1. Stop taking all analgesics cold turkey (I generally take 2 - 6 Aleve a day) I understand why I need to stop but the pain today is building.
2. Stop taking all the supplements I've been taking that I've heard will help except for Glucosomine.
3. Only take my Relpax which provides marginal assistance no more than once every other day.
4. Take physical therapy three times a week
5. Come back and see him in ten weeks
6. What if there are problems in the interim? I'm going to have to ride them out - don't go to hospital - they'll think you're looking for drugs and if they give drugs it will cause rebound.
7. He gave me Topamax to start taking. I took a number of years ago and it helped but made me a blithering idiot. He said to try it slowly and see if I can handle it - if not - take Lyrica (I'm already on 60 mg of Prozac).
8. He gave me anti-nausea medicine.

I left feeling okay/good - he's such a nice guy, but by the middle of the night, it hit me - try this for ten weeks!!!! Ten weeks is an eternity when you are in pain. I want to be a compliant patient; I want to trust my doctor; I don't want to become addicted to drugs. But I'm in so much pain all I can think about doing is going and shoving chocolate and other carbs in my mouth. Recently lost 140 lbs - gained 40 back over the last four months - as I tend to self-medicate with food for my migraines.

I just need for someone to say - you're on the right track; it sounds like your doctor knows what he's doing; hang in there or for someone to say leave - go to a headache clinic. Here I am a mental health therapist with a doctorate and I am absolutely clueless what to do about my migraines. But I cannot make a living missing so much work, and I cannot enjoy living feeling like this - I also have daily tension headaches which he really thinks are analgesic rebound headaches.

Any advice, encouragement???? Sorry - I know this was suppose to be brief, but I'm drowning right now!!! Thanks for listening!!!!

Hello, Cyn, welcome to the forum. We're glad you found us.

Did your doctor say you were in Medication Overuse Headaches, otherwise known as rebound? If so, you will have to stop the medication causing the MOH, under your doctor's orders and supervision, in order to stop the MOH. If you are not sure this is what your doctor is trying to do, give the office a call and ask. Here's some info about MOH:

Medication Overuse Headache - When the Remedy Backfires

The decision about when to leave your doctor is a personal one. Try this quiz for help in making the decision:

Is Your Doctor Right for You?

If and when you decide to leave your current doctor, your next stop should probably be a migraine/headache specialist. Many of our forum members travel long distances, even by air, to see their specialist. See if you can find a doctor on this list:

Patient Recommended Migraine and Headache Specialists

There are many, many options for preventives other than Topamax and Lyrica. Please realize, also, that if you are in MOH, preventives will not work until the MOH is dealt with. See this list of preventive meds which you can discuss with your doctor:

Migraine Preventive Medications - Too Many Options To Give Up!

You never have to apologize for the length of your posts here. I am, however, going to break your first paragraph into two, to make it easier on the eyes of people who may be reading with a migraine.

Take a few minutes to read the Start Here folder at the top of the forum. We are glad you joined us. Keep the questions and experiences coming. And at the risk of overwhelming you, I will leave you with one more link:

• Learning About Migraines and Headaches - Where To Start

Thanks for your response!
This may belong somewhere else, but I need to know what people have done to "ride out the MOH withdrawal." I'm sitting here with neck and forhead with ice but, oh my goodnesss, the thought of a couple of days with this, much less a possible month is enough to make me want to cry! What can I do for relief? What has worked for others? I can't function like this, and my job requires me to be "ON."
Thanks,
Cyn

People use a variety of "comfort measures" to get through MOH. It's not pleasant, but I know that our forum members who have done it have no regrets. We had a forum thread that dealt with people's favorite comfort measures:

What is in your toolbox?

I hope these ideas help. I've not been through MOH myself, so I have very few personal experiences I can share.

Hey Cyn,

I feel your pain- I've been in MOH twice. For me, the first few days were the worst, with the peak of annoyance and pain in about the 4th day... Once I got past that, I started feeling better slowly but surely.

Using the measures in the "toolbox" that Nutcracker gave you have helped me. Feel free to chat on here in the "tea room"- if you have energy or need to get something out... we're a friendly bunch, and many of us have been through MOH ourselves, and would be more than happy to help talk you through this hard time!

Hi Cyn,

Welcome to MyMigraineConnection.

Yup, MOH stinks. What helped me when I withdrew from methadone was taking long hot showers, and when I felt anxious I took walks around the block with my husband. He was great during this. It seemed if I kept myself busy, or distracted enough (which is never easy to do) I felt better able to cope.

Takking Relpax more than two to three days a week may cause Medication Overuse Headache too.

Topamax needs to be started on a low dose, and tapered up very slowly. I am a bit concerned about this - "He said to try it slowly and see if I can handle it - if not - take Lyrica" if he wants you to do this within a 10 week period. Some medications can take up to three months before we reach the correct dose and see a reduction in our Migraines frequency. 10 weeks isn't fair to you or the medication.....
HERE is information on topamax. What does your gut tell you about this doctor?

Let us know, ok?

Hi Cyn, one option you can talk to your doc about is a steroid pack to help you get through MOH. A number of people here have been on a short course of prednisone or other steroids to try to break a persistant Migraine, or get through MOH.

You may also want to ask about an IV treatment, though your options may be limited so you can avoid aggravating the MOH. I'll give you this link if you want to explore this option with your doctor.

IV Treatment of Refractory Migraines

It is no picnic getting out of MOH, that is for sure. But the only way to stop it is to stop the offending medication. Some meds, like the narcotic pain meds, can't be stopped cold turkey and do need a tapering schedule. Others can be stopped without a taper.

Know that while you're working through this, all of us are here to help and support you. Hang in there and let us know how we can help, ok?

I appreciate all the encouragement and direction. Ironically, I actually feel like a non- compliant patient as when I took in several print outs from the site and a list of questions, he told me to stop reading things and getting myself confused. So, I don't think he'd take kindly to any suggestions. My quandry is that he's actually a nice and caring person and who knows what I'd find in his place. Believe me, I've tried a lot in town.

I've laid on the couch in the dark with ice for most of evening. I live alone but a good friend came over with some crackers and peppermint. She's a pt and was kind enough to massage my neck and head for a while. I guess since it's one a.m. I've made it through the day with y'alls encouragement, my friends help and my ever present and snuggly 65 on standard poodle - my only child . Thanks all! Btw, what's the tea room?

Hi, Cyn welcome to the forum. Your doctor is wrong about you confusing yourself by being on line. If we are educated we know how to help ourselves. Information is as powerful as any drug we take. This forum is a life line in so many ways for our struggles with migraine.

The Tea Room is the place we chat about our daliy goings on, migraine or other. If we are really having a bad time of it Support, Vents, and Gripes is away to get support for that specific need.

Mary in NM

Cyn,

-:¦:-•:*'""*:•.-:¦:-•*Hello!*•-:¦:-•:*'''''*:•-:¦:-•*Welcome to the family!*•-:¦:- •:*'""*:•.-:¦:-

So, he told you to quit reading things. Did he offer you any patient education about Migraine disease, medication overuse headache, anything?

I know you like this guy, but if he told you to stop reading and learning without offering you any educational materials, fire his sorry butt and get a new doctor. The absolute best thing you can do for yourself is to learn all you can about the disease and the treatment recommended to you. You may not find anyone in your town who can help you. I couldn't find anyone in my entire state. For four years, I drove eight hours each direction to a Migraine specialist. It was a royal pain, BUT it was also how I got my life back. That doctor helped me go from an average of five totally debilitating Migraines a week down to one fairly easily managed Migraine about every two months.

Nutcracker gave you some good links. I'd like to suggest one more -- Migraine and Headache Specialists - What's So Special?.

Welcome again!

quote:

Originally posted by Cyn:
I appreciate all the encouragement and direction. Ironically, I actually feel like a non- compliant patient as when I took in several print outs from the site and a list of questions, he told me to stop reading things and getting myself confused. So, I don't think he'd take kindly to any suggestions. My quandry is that he's actually a nice and caring person and who knows what I'd find in his place. Believe me, I've tried a lot in town.

I've laid on the couch in the dark with ice for most of evening. I live alone but a good friend came over with some crackers and peppermint. She's a pt and was kind enough to massage my neck and head for a while. I guess since it's one a.m. I've made it through the day with y'alls encouragement, my friends help and my ever present and snuggly 65 on standard poodle - my only child . Thanks all! Btw, what's the tea room?

Hello Cyn and welcome to the forum family! It's great to have you here!

I see everyone has gotten you started with fantastic links so I'll just add one to a tool I think you'll find valuable:

Your Headache and Migraine Diary

It's a great way to track triggers, the effectiveness of medications, and any patterns to your Migraines and headaches.

Teri's right, if your doctor doesn't want you to be informed about your disease, it's time to fire his sorry butt. I added a Migraine Specialist to my health care team in January. I travel from Virginia to Texas to see him. With his help, I've already seen improvement on how long my Migraines last and how severe they are. I urge you to find a doctor who is willing to help educate you as well as encourage you to educate yourself.

Again, a warm welcome to the forum! I look forward to seeing you around the forum!

Teri - the video didn't show up when I initially read your post. Thanks for the laugh!!!!