Second Opinion Doc

By Eva Monday, January 28, 2008

- A
- A
- A

Today I saw the second opinion Doctor (My regular migraine doctor referred me). I am not going to lie, I had high hopes, based on everything he does. But to tell you the truth, I was disappointed a little.

He went through my whole history, diagnosed me as having chronic migraines. After he looked at all the preventives I have tried he said that there are not many options (ha!). The next thing I am going to try is Sansert. Its success rate is supposed to be 50-50, it either works or doesn't. The only bad thing is that I won't be able to use Imitrex as an abortive. So I will be without abortives. It can only be used for 6 months, then a break of about a month, then you can use it again. We'll see what my doctor says about the Sansert, it's up to him.

He also wants me to have a good eye exam, because there are some issues with my peripheral vision.

I don't know, it was a weird day, and the past week was hell (still is). So the best thing is to go and have some sleep, and tomorrow will be a lovely day :).

General Update

Comments (20) | Add comment

jennyc

1/29/08 9:44am

Hi Eva!

Is Sansert the med that has strong health warnings? If I remember correctly, my last HA specialist talked to me about trying it. Are hardening of the heart valves and lungs possible on this med? I remember my specialist saying I'd have to have routine CT scans of my heart and lungs to be sure serious health complications weren't happening...

I think you'll have to read up on this med and talk with your regular doctor about his thoughts...I know, it's tough to decide about something like this! You can't live your life with such a high level of pain, but you certainly don't want to do damage to the rest of your body!

I'll be thinking of you! Big Smile

Heart jenny

Eva

1/29/08 12:25pm

Hi Jenny,

yes, it is the one you were offered some time ago. You were the first person that popped into my head after he said Sansert.

It does have lots of serious health warnings, I think that is the reason it is not used as much. It is more like the last resort, when the severity of the migraines and the effect on a person's life outweights the negatives. From what I have read the time trial for it is only a month, if it doesn't work in a month, it is stopped.

I don't know, it is a tough decision. I think I will make a new discussion on the forum asking about it, maybe that will help me. I have until Monday to decide (I'll see my regular doc on monday).

Eileen Gray

1/29/08 11:23am

50/50? Sounds like some good, some you are on the fence about? Did this doctor say why he picked that med? Of all the other meds and combos out there, why one that has a 50/50 shot (not like others don't) but also one that you can only be on for a limited amount of time, and it takes away your chance at an abortive?

I just sometimes wonder why doctors do what they do and prescribe what they prescribe.....I find it all very interesting.

Eva honey, I'm sorry this guy wasn't the "white knight" I know I've gone through many, many doctors now, hoping one would be "the one" who would at least help me get on the right path. I know what it's like to get excited over a visit, only to be let down with so-so results. I'm sure a lot of us do.

All we can do is keep learning and living. Knowledge is our best weapon in our healthcare choices! Good luck with whatever you and your doctor decide with the new medication.

-Eileen

Eva

1/29/08 12:30pm

Hi Eileen.

Why he picked this med? I don't know. They always ask: So you had absolutely no relief from any of the preventives you have tried? And my answer is no, from nothing, not any of the 11 preventives, not botox, nerve blocks. My average pain level is 3/5, everyday, then 2 migraines a week, each at least 1 day of 5/5, then 2 days of 4/5. I guess he considers the Sansert the last resort, as I wrote above, in the reply to Jenny's comment.

It is just so depressing. I am not expecting a miracle pill, but they are always so pesimistic. I asked him what would I do if the Sansert won't help, and he said: wait untill they come up with something else. And I was just stunned.

Eileen Gray

1/29/08 12:49pm

Wow - he actually said "we'll wait for something else to come out"???!!!! Yeah, 11 preventives - that's quite a few, but there are still so many!

Have you given any thought to coming to the states to a headache clinic?

I agree with your responce to Jenny - I think this would be a good topic for the forum, since this is a medication I've not heard of being commonly used.

I wish we all find our magic pill one day!

We love you girl!!!! I'm thinking of you!!!!

Jamie

1/29/08 5:15pm

I hope you know that you deserve so much more than a doctor whose plans involve "waiting for something else to come out."

There are so many meds, as you know...

I hope that as you debate whether you want to start Sansert, you realize that there ARE other options out there- and other doctors. 11 preventatives may feel like a lot and seem like a lot to some doctors, it may be time to think about what you want to change- the meds- or the medical staff...

Hugs,

Jamie

MaxJerz

1/29/08 9:50pm

I am also not impressed with your second doc who said that waiting for another med to come out is your next option. I can empathize with your frustration though. My migraines are also now daily, with severe ones 4-6 times a month. It's awful. I'm sure you know that.

Definitely give yourself plenty of time to think about the benefits of going on Sansert vs other options - new doc, etc. I'm glad that you started a discussion in the forum and that Teri could give you some more information.

Let us know what you end up deciding. You know we all love you and are here for you. Heart

Eva

1/29/08 11:25pm

You guys are a lot of help, in a lot of ways :)

I know, the doctor' suggestion to wait like I am a lost case was a bit suprising. He is considered to be quite an expert, all over the magazines and TV here. But he is not the first expert who suprised me this way, the other one told me that a 2 week migraine is normal and actually hung up on me.

I will update on monday, after I see my regular doc. I want to hear his two cents.

Patti

2/ 2/08 7:30pm

I was reading here on this site to seek further help. I know how you feel.I use to suffer with head aches / Migraines / icepick headaches, Clusters - you name it I had them for about 20-25 days out of the month I started on this stuff I found in Rite aid ( local drug store) called MigraSolve -Petadolex which is natural and no side effects. ( for the first several doses though your urine will be very Yellow/ orange) No worries said the dr.. I take it every day to keep them at bay- I now get them maybe 10 - 15 days out of the month and for the most part not nearly as severe. I have also went to many many drs. tried all kinds of Rx with no happy ending. i gave up on them after 12 years and started to research my self.This is the most relief I've had in years! Good Luck !

john

2/ 7/08 3:44pm

I have had great results with topamax after alot of experimenting with other medications

Eva

2/15/08 12:29pm

I am glad that Topamax worked for you, it did not for me. But there must be something that will. So the "keep trying" is like my little mantra.

MyHeadHurts

2/11/08 5:50pm

ive tried all meds except sansert & depakote.

before you try any medication you have to outweigh the benefits and the risks; just like any surgical procedure. also think about how it will affect your life 20-30 years from now.

i.e. hardening of heart valve. having to get ct scans periodically. that spells RUN AWAY for me. im not too impressed w/your 2nd opinion doc. where do you live? maybe we can help locate a good specialist for you.

Eva

2/15/08 12:31pm

I understand, I don't like the side effects either.

But if you tried it, and it helped, would you stop it because of the side effects and experience millions of migraines or would you stay on it for a while.

I can't imagine to have a week without a headache, I am lucky if I get a day every couple of months.

reliefatlast

2/14/08 2:35pm

Hello. It sounds like you have tried many different medications and still have alot of migraines. Have any of your doctors suggested that you try an elimination diet? The most comprehensive one I've seen is Heal Your Headache, the 1-2-3 Program by Dr. Buchholz.

I've suffered migraines for years and always suspected that food triggered many of mine. After just days on this diet I began to feel like a heavy weight was being lifted from me. I have now been following it for 3 months and my migraines have cut significantly. MSG, yeast, cheese seem to be huge triggers for me. It was a bit overwhelming at first trying to figure out what I could eat, but once I got the hang of it I would never consider eating something that could trigger a migraine again.

After 6 weeks I was able to wean myself off my preventitive meds and now I only take magnesium, riboflavin, B12, calcium, Co Q 10 and butterbur everyday. I learned about using supplements from reading The Magnesium Miracle. It has a wealth of information in it. I have also had blood work and a saliva test done to measure my hormone levels.

My next step is to have a Allergix IgG4 food reaction test done. I'm told that this will show every food allergy that I may have and also show where my body is defficient in minerals and vitamins and to what extent so that I would be able to supplement naturally with hormones in order to help myself feel better.

I do still have an occassional migraine but nothing like the 9 to 13 migraines I was having a month. Hope this helps. For me, anything I can do to help myself is worth a try.

Best of luck!

Bonnie

Eva

2/15/08 12:33pm

Hi Bonnie, thank you.

I have read all the books you have mentioned, they didn't do it for me. As far as elimination diet, I pretty much eat like I am on an elimination diet, but I also do not have any food triggers.

I know that for a lot of people, elimination diet helped, but I, unfortuantelly, am not one of them.

Ben

2/16/08 6:36pm

Eva,

I don't know much... Anything really... But I diagnosed myself as a Cluster Headache sufferer a month ago and have managed to cut my suffering substantially with what I have learned. I went from using Relpax daily, or several times daily, to not at all.

I have seen my Neurologist since and presented all my evidence, yet they swear it's not cluster. They did prescribe 02 @ 15 liters per minute in a non-rebreather-mask for 15 minutes as an abortive because I pressured them to do it.

It works!! Most Cluster Headache sufferers say it works, and they're right!

I saw another Neurologist for a second oppinion yesterday and he also is convinced that I have Migraine.

The question now is, Who is in charge of the misdiagnosis, me or two Neurologists?

I have not seen 02 listed a rescue treatment for acute migraine but it works on me and is safer that triptans. I don't know why doctors are so reluctant to prescribe it.

What I'm suggesting is that you might try 02 as an abortive. If it works for you at least you'll still have a tool available if you try a new medication the prevents you from taking triptans.

Food for thought. Not a diagnosis or a promise that 02 can work for you.

Eva

2/19/08 12:48pm

Thanks Ben,

as far as the O2 goes, I was looking at it for quite some time. My doc says it is not that effective in migraine. I guess otherwise they would be giving it to people, just like for clusters where it is normal.

I don't know who is right as far as the diagnosis goes, but the good thing is that you found something that works, and it is 100% safe.

Ben

2/19/08 1:01pm

Eva,

Safe as it is, dosn't it seem like it would be worth a try for you?

Clusterheads have trouble getting 02 prescribed also. Docs are really reluctant to prescribe it??? They must be afraid we're going to burn our homes down or something...

Maybe you could take a trip to the ER next time you get hit and demand 02. If it works great! if not, what have you lost?

Just make sure if you do that you get 15 liters/minute of pure 02 in a non-rebreather mask for 15 minutes. Anything less may not work.

What have you got to lose?

Dixie

2/22/08 4:47pm

I wonder if the medical community will ever figure out the reasons for migraines/head pain. I, a nurse was diagnosed with atypical facial neuralgia and I also get migraine headaches. Anyway,I live with chronic pain in my right jaw. My mother has trigeminal neuralgia & I can't help but believe that the two types of pain are related as we are! The only thing that works is fiorianl, so I'm without medicine about half of my life. Otherwise doctors think I'm "a drug seeker." I've tried having three teeth pulled, facial injections, accupunture, chiropractor sessions along with some prophalctic drugs which do not work at all. Anyone out there with this type of pain? If so, I'd love to hear of your experiences. Have a great day! Dixie

Denise Garrett

4/12/08 4:57pm

Eva,

I've never heard of Sansert. Let me know how this works for you. I know how it is to keep trying new things. I've had migraines the last 3 days, today is a little better. I went about 5 days without one. I thought I'd been cured. I pray alot. My bible study teacher says it's a curse. Because, these migraines run on my mom's side of the family. My aunts get them too, and my mom gets headaches alot. I'm on nortriptyline as a preventive, and I take Midrin, which helps sometimes, if I take it right when the migraine starts. but sometimes, it just helps for a few hours, and I'm back to the pain!

Good luck to you.

Denise

Second Opinion Doc

Ask a Question