Need help, advice

I suffer from chronic migraines and am absolutely desperate. I started with migraines as a child and they became more intense in duration and severity as the years went by. I have lived with these things for 30 years. My GP is useless and I have tried so many

meds that I feel like a chemistry experiment gone wrong. Of course, none are working. I do get relief from triptans, which my insurance company does not want to pay for, and from pain meds (temporary relief, but I'll take it). I am on preventative meds but I

have not seen any results. Topomax was great for a while, but it just quit working. I'm on it again now, but no go.

I have seen several neuros over the years, but found no help there. The last neuro I saw was ten years ago. He told me all my headaches/ migraines were due to rebound and that women have a very low pain tolerance so that headaches and other ailments are to

be expected. I was appalled, but desperate. I did stop all meds as per his advice and ended up hospitalized with an intractable migraine and dehydration. Obviously, I decided not to return to this neuro. I also swore off all other neuros.

I have now decided that I must have some quality of life. I have scheduled an appointment with a new neuro who was recommended to me by another chronic migraine sufferer. It is a three hour drive, but maybe it will be worth it. I am so concerned about being

marginalized again and dismissed. There have been many days that the pain is so intense that I have considered suicide. I know this sounds insane, but the agony is so intense I can not even describe it. It is worse than childbirth. I just feel like I can not take it.

I understand doctors are reluctant to prescribe meds for pain, but I am not even living anymore. I have five beautiful children and a loving husband that I want to enjoy. Instead I find myself curled in the fetal position, in a dark room,

with ice on my head. I had to quit my job as a teacher because I was so sick and in so much pain.

Please advise me on how to handle this upcoming appointment in November, the soonest they had. I need this neuro to really help me! I feel so lonely, rejected, and desperate. Thank you in advance.

Hi Suz,

Sorry to hear about your plight. Unfortunately it's a bit too familiar.

I have seen several neuros over the years, but found no help there. The last neuro I saw was ten years ago. He told me all my headaches/ migraines were due to rebound and that women have a very low pain tolerance so that headaches and other ailments are to

be expected. I was appalled, but desperate. I did stop all meds as per his advice and ended up hospitalized with an intractable migraine and dehydration. Obviously, I decided not to return to this neuro. I also swore off all other neuros.

This is bogus. Studies have shown women have higher pain tolerance if anything. It's how we stand childbirth. And the rebound thing is highly over rated. It seems to be the default when they don't know how to fix you. So anytime they play blame the patient it's time to run not walk elsewhere.

In any event, this site is full of people who had not had much luck with preventatives, so you are not alone. After trying just about everything and going through side effects that were as bad or worse than the migraines, I decided to try natural supplements. I take 200 mg bio-identical progesterone, 5000 mg Vitamin D and 400 mg magnesium daily. It made a big difference for me in reducing the frequency of migraines, although not eliminating them completely. Botox might also be worth a try if you have not tired it.

In the mean time, hang in there. Some doctors are better than others. I hope the new nuero works out for you.

oh suz, i am so sorry for your plight. as migrainegirl said above, many of us are in the same (sinking?) boat. i'm so fortunate that triptans work for me. they don't take the pain away, but allow me to have a life.

the doctors you have consulted have been *&%#'s. i don't normally swear, but this scenario always makes me very mad.

i've been dissed by a number of docs, also, mainly neuros. they seem to have the hugest egos in the medical world. rebound, my foot!!!

btw, i'm 72 and also have 5 (OLD) children. somehow, i made it thru raising them, mostly without much help from their dad. usually i went to bed with the kids at 8:00........

my M's didn't start til i contracted what was probably lyme disease, at age 29. so i've had them for 43 years, now daily. nobody had better ever tell me that it's my fault for them being daily. grrrrrrrrrrr.

the only advice i have for your upcoming appointment is to stand your ground. have your husband or another person with you. then it will be "two against one", which is a better position to confront the doctor with the facts of your case. nicely, of course, but with conviction.

also, the second person can take notes. this probably annoys doctors. so what, i say! when your head is killing you, how are you expected to remember what was said?

we are pulling for you, here. we've been there. dianne

I'm sorry to hear you've had such horrible experiences. A lot has happened in ten years, and I think you should consider trying another neurologist. The last one sounded like a complete idiot, but they're not all like that. Could you ask your doctor for a female neurologist? If nothing else, she's less likely to be sexist! Unless you're willing to put up with the pain, you have to keep trying, as hard as it is when the people who are meant to help you do the exact opposite.

Thank you all so very much for the advice and encouragement! Yes, I must suck it up and confront this because I can not go on like this any longer. I sure hope things have changed in ten years because if I get the same response I fear I may just break down in tears right there in the office. Seriously. I am just praying for results. Another bad one today so Im off for now. Prayers and thanks to all!

Hi Suz. I know its difficult at the moment, but when you get a moment where you feel better, think through exactly what you will say to the neuro (as I said in my other discussion). I think that planning and even writing down things is for the best. If you get to the appointment and you feel sick then you won't do a good job of explaining yourself. Or, if you feel fine for your appointment, then the neuro may trivialise your situation. If you need help with what you are going to say then run it past us and I'm sure you will get many helpful suggestions.

If triptans have worked for you, you should focus on getting your insurance to cover them. Make sure to tell the neurologist that so far your insurance has not wanted to. The reason insurance companies don't want to cover triptans is because a lot of them are very expensive. Your new neurologist should be able to give a diagnosis to your insurance company that requires them to cover triptans! I have had to fight almost every health insurance company I've ever used to get them to cover the expensive Frova that I require. Most recently I had to get my doctor to write them a letter specifically saying that I needed x-amount of Frova available to me each month.

If you have been thinking about suicide, I would recommend making an appointment with a psychologist in addition to the neurologist. I have heard that depression is commonly associated with migraines. It could be that the two conditions are related, or it could be that having painful migraines so often causes people to become depressed... that's certainly common sense.

I am similar to you in that I have tried so many medications and none of them have worked. Ask the neurologist about over the counter supplements, like others have mentioned. Some people have had relief from taking vitamin B2, magnesium, vitamin D, etc. At the very least, these supplements usually don't cause many nasty side effects like prescriptions do and you don't have to worry about your insurance covering them or not. You could even start trying some before you see the doctor; just look around these forums for what people recommend.

Try to figure out possible triggers. I'm not sure if you have already done that or not, and it can seem nearly impossible when you're getting the migraine so often. Believe me, I know! A lot of people on these forums say that some foods trigger their migraines. I've had them since I was 12 and now at the age of 25 I just discovered that red dye #40 causes my most painful and debilitating migraines, with the worst nausea, and the worst emotional rollercoaster issues. Unlike weather, or even sleep, or other environmental triggers, food is something that you have more control over. For the longest time I figured that foods were not my issue, since I was getting the headaches all the time how could it be something I was eating, since I'm not eating the same foods all the time. Come to find out that it's a synthetic additive that's in so many foods, I was eating it almost daily one way or the other.

Anyways, don't give up hope just yet.