Avatar universal

How many have migraines and how have they affected your life (including socially)?

My migraines are so debilitating.  I can deal with the dragging foot and numbness, the vision problems, the speaking mix-ups, and the tremors to date.  But, I am at the end of my rope LITERALLY with my migraines.  I have placed ten calls to my neuro with no call back from him or his partner.  I believe that they are related to my MS.  I have had them for twenty years and they have ruined my life, literally.  I could not go to medical school and have been ostracized from friends and family because of them.  People are tired of me always being sick.  Like I want to be sick and am not tired of it also.  I have been to a top ten hospital (where I had worked in the past and was also on their research staff at the medical school) and also an advanced medicine neuro center with advanced head pain specialists.  It has been written that basically all preventatives have been tried and failed and I am on disability because of my migraines.  The primaries will no longer treat my migraines since my MS diagnosis.  The specialist say go to the ER.  The ER tells me to see a specialists.  I go to urgent care and they tell me to see a specialist or to go to the hospital because I am such a complicated case and I need more treatment than they can provide for me.  Yet, the ER seldom does more than the urgent care.  I am SO SICK of it all. The ambulamce rides get expensive.  I have been hospitalized twice because I became so ill that my heart and my enzymes were out of wack during them.

I am especially tired of the judgmental attitude of the nurses (No offense to anyone, please) that think it is all a joke.  It is as if they go out of their way to make things more difficult.  Either they are ignorant or just plain lazy.  I have several degrees and worked over a decade in the medical field and they would have been fired in my day.  Some of the doctors and nurses are great.  And them some just do not look at the record and waste a patient's time and cause them undue suffering.  I am just so tired.  I am not depressed.  I am being realistic and

just really frustrated and ready to give up because all I get are complaints from people who are supposed to be family or my special friends.  Ten calls and still no response from my MS specialist even after I told them that I went to the hospital for treatment, again.  I know that they are busy.  But, I doubt that they genuinely really care.

How many other of you feel like I am feeling sometimes?  

I want to live.  But, this is NO life.  My boyfriend told me to get the problem fixed or get out.  I have no other support left.  My family is mostly dead.  And the others will not even believe that I have MS even though I take Copaxone.  It is all useless.  There is life and there is quality of life.  I am VERY tired...so very tired.

Anybody know of any new treatments out there to try?

Thanks for just listening.  Sometimes that can be such a big help.
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4943237 tn?1428991095
I am so sorry to hear how bad things are for you with migraines needanswers.  

From what you've said it sounds like you've exhausted all the 'conventional' treatments for migraines.  Have you tried anything even remotely 'alternative'?  

I work on the theory that migraines don't just come from nowhere, so there must be something to prevent/eliminate them.

A few of things I can think of to try, if you haven't already, are a food elimination diet as sometimes there is a food that causes migraines in susceptible people.  Chocolate is a fairly common one.

Another option if it's available, is acupunture.   Somehow it cured the migraines I got every month after my second child was born.   I've got absolutely no idea how it affects your head putting needles in your legs and stomach. but it certainly changed things for me.  

Maybe explore reflexology?  I was a bit sceptical of this one until a friend had it.  Without him saying anything, the person was able to tell from a spot on his foot that he had a problem with his shoulder, so maybe it worked, or maybe they just noticed his shoulder wasn't quite right, I don't know.  

Maybe a good homeopath would be of some help too???

Hope these suggestions are of some help.

Best wishes

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Avatar universal
Migraines are ultimately what lead to my MS diagnosis. The play a big part of my life and while they don't control my life as much as they do yours they can be very debilitating and can have a negative impact on my life at the most inconvenient times.

I started getting migraines when I was about 6-years-old. Other than taking baby aspirin and later Ibuprofen, they mostly went untreated. They weren't quite as frequent as they are now, but I did get them enough that my mom did find them unusual. She did finally send me to get an eye-exam when I was about 15. Ironically I left the exam with a migraine.

My migraines became really intense in college. They become unbearable around 2005. In 2006 I was finally able to start prescription medication since I finally had insurance. Maxalt was tried first. The first time it worked but also pretty much knocked me out. The second time it knocked me out, but didn't relieve my migraine. After that, it stopped working.

I started Topamax as a preventative and it did decrease the frequency of my migraines. I did have to have to dosage increased a few times. In 2010 I again had a difficult time getting them under control. Not only could I not control my migraines, but during and after my migraines I seemed to be in sort of a stupor. I had difficulty speaking and retaining information. This was all on top of the debilitating fatigue that I had been suffering, that I didn't think was at all related. I had also had some muscle spasm and pain issues and was found to have very low vitamin D, but at this time red flag still had not gone up that I need to do anything other than take supplements.

I went back to my PCP and he increased my Topomax and added Imitrex but wanted to refer me to a neurologist just to be thorough. The basic neurological exam went okay, but she wanted to do a routine MRI. It was that MRI that found my lesions that ultimately lead to my MS diagnosis.
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Avatar universal
I agree with Poppy on trying to find triggers and alternatives for relief. I have found some relief with a combination of chiropractics and massage.

I have also found that some of my triggers are weather (low-pressure fronts that come with snow and rain storms), red wine, caffeine withdraw (I gave up drinking Coca-Cola daily), It suspect other food triggers, but I haven't quite narrowed them down yet. I also have to keep a pretty stick sleep schedule and I have found if I stray form it too much I do tend to get a migraine.

Some people have found relief form taking the herbs Feverfew or Butterbur and eating foods high in magnesium such as spices, nuts, cereals, coffee, cocoa, tea, leafy vegetables, grains and nuts.  I saw on the show The Doctors that pumpkin seeds are supposed to help with migraines.
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Avatar universal
Thank you so much for your input.

I have pretty much done and/or tried everything suggested thus far.

It was weird.  I had become sick after being "required" to take that hepatitis shot that was taken off the market  as having caused some ADEM-like conditions with MS-type problems following in Europe.  [The shot was later banned in five different countries.  I believe it was made by a US company and of course our government has said that there was nothing wrong with it]  I had also been exposed to some other things at work that I should not have been allowed to be exposed to.  Other people became ill as well.  I remember becoming dizzy-like one day and walking down the hall.  It was like someone threw a tomahawk or hammer at me and knocked me down.  I fell to the floor.  I started having loss of vision and thunderclap headaches shortly after that and my migraines have ensued.  It took six more years and a neck injury before I could get anyone to order an MRI.  And then the physicians just kept scoffing at me and my "interpretation of" the spinal cord spots that they kept telling me either were not there or did not mean anything or else was simply damage from the injury.  One highly-respected specialist gave me all three answers!  Finally, about sixteen years later, I was finally given my MS diagnosis.  It has been a long, arduous struggle.  While I did not want an MS diagnosis I was relieved to finally be validated and be able to have a doctor try to help me.

Thank you for responding.  I do not mean to sound whiny.  I am just tired of people yelling at me and threatening me when I cannot do things because I feel so poorly or am feeling very weak or extremely vomiting to the point that IV Zofran and Reglan (or their generics?) together will not stop it.  A hospital had even offered to o allow me to stay for a week while they additionally even tried a newer experimental(?) drug to try and stop the pain and/or vomiting.  I became sicker.  I can deal with the pain better than the intense nausea and vomiting I think.  The ambulance drivers know to start an IV and medicate me in the ambulance right-away now.  Early-on the ambulance district would chastise me and tell me that there was never any reason for someone to go to the hospital by ambulance for a migraine and also that medicare would not pay for it.  And if the government did pay it, that I was just wasting the tax-payers money.  Well, how does one drive when dizzy, in level ten pain, with high blood pressure, vomiting and losing one's vision?  I guess I am just ignorant and do not understand...The police have the audacity to ask me if I took my medicine.  Of course I took my medicine.  I would never ever want to put myself into such an awful position on purpose.  After all these years, that question has the tendency to rub me a little raw.  And then the ER tells me I need to be on  preventatives, etc. etc.  Perhaps these headaches are a result of my MS.  I know that it is in my medical records from a top ten national group of doctors that virtually everything has been tried.  Yet, we suffer and get scoffed at and scolded instead of full treatment.  Again, I am sorry for all this whining.  I just needed to get this off my chest.  I have been trying to advocate for people as well.  We did not have any public transportion system.  I have been working with a representative and some others.  We have a limited one, now.  However, for some things they want a two day notice and they do not go to the nearby hospital facilities as they are across the county line.  Some people cannot predict their health and needs two days ahead of time.  Oh, well.  At least it is a step in the right direction...

Thank you for all your help!

I used to play sports nationally, play music, volunteer, and be on the school board.  My life has so turned-around.  I pretty-much feel isolated and understood.  I tried a counselor who basically told me that I was in a mess and that my life was "basically" a bowl of c#%$ and that they did not have an answer for me.  Well, wow, that really helped me, too.

I just want some semblance of health and my former self so that I can continue with my life.  I have tried and tried to advocate for myself.  But, the lack of knowledge and discrimination have pretty much been a hill too large to keep battling.  I did get a small recent victory though.  So, I guess I will keep looking for answers and fighting for my answers.

No one else in the family has had MS or migraines to the best of my knowledge.  Mostly they have good health and then die fairly quickly of cancer.  I really appreciate the support of this website.  I feel it also allows the healthcare profession to learn more about our diseases from a patient's perspective.  
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