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Migraine lasting over a month

by Janice H
(Brooklyn, NY)

Status Migrainosus

Status Migrainosus

Hi, my name is Janice and I am 21 years old with new onset headache.
It started Dec 25,2009 and continues to this day (Jan 28,2010)

I went to the emergency room 11 days after the onset of what i thought was a headache. They gave me Reglan over an IV Infusion for 5 hours. I had no relief, i explained i had this headache (worst pain ever) for 11 days and medications such as NSAIDS (MOTRIN, TYLENOL) were not working, they were so debilitating i couldnt go to work. I was discharged still in pain and was told to see my PCP. Blood was taken and not tested.

s/s
throbbing pain
tenderness** I couldn't wash my hair for periods of over a week
sensitivity to light/loud sounds
dizziness
confusion at times when pain is at its peak.


I finally saw my PCP two days later and was referred to a neurologist. The neurologist put me on Prednisone 60mg for 3 days 40 for 2 days and 20 for 2 days. Yesterday was my last pill and i woke up today in pain, still the same symptoms.
I have to wait two weeks for an MRI and a CTA.

If you would have any advice, an treatment modalities or just any information, I would greatly appreciate it.

Janice

Answer:

Hi Janice,

You do not mention whether or not you have had headaches before, if so something "tipped" you over the edge into status migrainosus.

The neurologist was correct in using steroids until testing can be performed. At the present time until the MRI and CTA can be performed triptans or ergots might not be such a great idea.

The good news is you responded to the steroid..the bad news is you need to be on it a bit longer. If your neurologist cannot offer IV steroids to break the migraine, then oral prednisone could work, but you need to be on it longer. Perhaps 60mg per day for 10 days, and then taper off by decreasing every 5 days. Decreasing every 3 days might have been a bit too fast.

Call the neurologist's office, get to a nurse and ask to have more treatment. You do not have to wait until you see the doctor again in the office..they might be able to manage this by phone.

The scalp sensitivity is called cutaneous allodynia. This occurs when the migraine has progressed to the status stage. Usually by this point, oral meds aren't too effective but in your case it might work if the treatment is a bit longer.

Good luck with the migraine headache symptoms!
Mary Kay Betz MS RPA-C

Comments:

Hi ,

I need the same answers - help please! I have the same problem as you, only I have been dealing with it for 7 weeks now and have no answers from my doctors. They just keep telling me to be patient with the medications and let them work only...they are not working!!!! I am trying to be patient, but it is so hard! The pain is every day, all day. I can't do anything. I am not working, I cannot enjoy life, I cannot enjoy things with my family the way I used to. It feels life everything around me is basically on hold because of this pain. Does anyone have any answers???

Answer

Hi Tricia,

You do not say what caused the migraine, but if it has gone on this long you would benefit from IV infusions. Usually we do serial infusions in our clinic. Most people do well with 2-3 days of IV steroid mixed with magnesium, then a steroid taper for a week after. Side effects are minimal (sleeplessness for a night or two) and it is usually quite successful in breaking the headache.

If you a not seeing neurologist, get to one. Ask your doctor if he/she can set up infusions for you at a local infusion center. All they have to do is write the orders and a local chemo infusion center could do it for you. We do Remecaide and other infusions all the time at our place as the rheumatologists in our town don't want to set them up in their own offices.

Best of luck!
Mary Kay

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Migraines

by Travis

Hey so, I'm only 12 turning 13 in 24 days and ever since the start of the year i have been getting constant migraines up until the point where i throw up, my mum just says i keep on stressing but i have nothing to stress about, is there any way to stop these migraines?

Answer

Hi Travis,

Glad you asked! Actually there is a lot you can do to get migraines under control. First of all take a look at your lifestyle and see if anything might be triggering a headache. Most of my teens get much better just by putting lifestyle changes in place.

Part of this means going to bed and getting up the same time every day, within an hour, even on the weekends. Migraineurs have to have a bit of a rigid lifestyle. Regular sleep helps settle the brain down.

My teens also do very well on vitamin therapy. There is a vitamin supplement that we recommend called Migralief which has vitamin B2, magnesium and feverfew. All are proven to treat migraine and for some reason, the younger the brain (like you) the better the response to the vitamins. You have to give it 90 days to see the best response.

Next, talk to your parents about possibly seeing a neurologist who can help treat your headaches. There is no reason as to why you shouldn't have appropriate medication to take at the onset of the headache so no more pain, nausea or vomiting.

Good news..boys tend to grow out of migraine by the time they are 19-20. I know..sounds like forever.

Best of luck..
Mary Kay Betz MS RPA-C

Comments:

hey so im 12 almost 13 and i have a migraine pain at about a 9 right now and i cant stop vommiting,i get really dizzy,and i have diarrhea. how do i get rid of this pain!?!?!

Answer

Hi Emily,
Please talk to your parents about this. If your headaches are so severe that you are vomiting, then you need to see a neurologist.

Mary Kay

Get a Specialist

I started having migraines when I was 12 years old.(I'm 48 now).My son has had retinal migraines since he was 12 years old.(He's 19 now). I've been on every medication possible with minimal results. I am a nurse and a mother of 2 sons. My husband is in the military so stress reduction, proper sleep, and eating well is not always an option. Chronic pain is depressing and exhausting. I can only pray that one day I will be pain free. One of my biggest mistakes is not finding a specialist right away, but instead, depending on a general practitioner. Anyone who calls these a headache, run the other way. It is a vascular disorder and needs to be treated appropriately.

Carol

Answer:

Good point..we know know that migraine is a neuro-vascular disorder and many people are pushing (within the headache community) for it to be called a disease state.

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Intractable Migraines

by Linda
(Saratoga)

I've had migraines since I was about 4 years old (I called them eye-aches)and would have severe nausea with them. I'm now 54 years old and am getting about 4 migraines a week. Some of them last for days.

I cannot take treximet or imitrex, I have tried almost every anti-depressant and anti-seizure drug (like tegretol) and with the exception of having total liver failure from IV depakote, they have not had any effect on me. I'm now taking a limited amount of dilaudid for the severe pain and my PET scan is now showing 4 'dark' spots in my frontal and temporal lobes.

My personality has changed and I've been on disability since 2000. I even had heart-attack symptoms (jaw pain, numbness left arm etc) that blossomed into the migraine from hell in the ER.

My heart is fine. I've had the botox shots around my head and neck (3 series) and after each one my headaches are worse. Can you think of anything else I could try to help my migraines? Do you think medical marijuana might help with pain relief?

Answer:

Hi Linda,

It does indeed sound like you have been through everything with these migraine headache symptoms.

I am sorry the Botox didn't work for you but the studies say 25% won't respond. That is what we are seeing in our clinic.

At this point, you are right, Treximet and other oral triptans will have little or no effect. It sounds as if you are in status migrainosus. You mentioned IV depakon, but have you had IV steroids or the Raskin protocol? This is IV steroid with DHE injectable twice a day for 2-3 days and compazine, then oral steroids for a few weeks to taper.

Your doctor could also consider oral methergine low dose for a few months. Sounds scary but really isn't and I have had some real success with this in refractory patients (those who nothing else works).

My best recommendation for you is to find a headache center that does inpatient treatment. Cases as severe as yours have a better chance when treated this way.

Two of the best are:
Michigan Head and Neurological Institute
Jefferson Headache Center

Both places have the ability to put you in the hospital for several days to treat the headaches. Insurance will have to be discussed with each place and your doctor may have to write some letters..I know I have for my patients and it has worked.

As for the marijuana, I know that some medical use has occurred for chronic pain symptoms but I have not heard of this (in readings or from patients) being used for chronic headache. In fact, those patients who are using it seem to get worse headaches! If you have some damage on a PET scan I would not recommend using this.

I wish you the best of luck and hope you get some relief soon!

Mary Kay Betz MS RPA-C

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Migraines everyday

by Anonymous

Migraines Everyday After Car Accident

Migraines Everyday After Car Accident

Hello
I still have migraines and tension headaches almost everyday but I dont think I should be on this much medicine-verapimil-40mg once a day and gabapentin- 100 mg 3 times a day and then if I have a headache I take butalbital/apap/caffeine/codine-30mg (Esgic, Fiorcet) and I feel like dont have a good memory anymore and my work performance is not good. I tend to forget ALOT. People have complained at my job that I look like I'm on drugs. I have a lawyer for my MVA that caused these migraines and tension headaches. Is there anything like surgery that the Drs can do to make my migraines go away or take out some nerves, These headaches are ruining my life. I need serious help. I had these migraines for almost 2 years since the MVA-please help cuz I have 2 kids that I can barely take care of cuz my husband is on deployment and I dont want to keep losing jobs.

Answer:

Hi,
All to often we see patients like you who have moved into chronic daily headache after a motor vehicle accident. The tension headaches and migraines are part of what is called post-traumatic headache syndrome. I suspect you are also not sleeping well and yes, memory loss is quite common when there are injuries to the brain after an accident.

Part of what is going may be some analgesic rebound from over use of the butalbital. This has become such a problem for headache patients that the drug is being taken off the market in Europe! If you have not had a triptan like Imitrex or Maxalt you might consider this as they work better for migraine and are non addicting.

The drug of choice for this condition is amitriptyline or Elavil. This must be raised slowly to 50-75mg taken at night. Most doctors are unaware of the higher dose needed to treat this syndrome and usually underdose the patient. It is a great anti-spasmotic for tension and neck pain, treats migraine and gets you to sleep at night. Gabapentin is almost never used for this problem and neither is verapamil.

An anti-seizure drug that could be used would be either Depakote or Topamax, again at the appropriate dose that gets a good response. We start at pediatric doses and move up slowly.

Things you can do: get on vitamin therapy for headache, B2400mg, feverfew and magnesium 400-800mg per day. Stay on it for 90 days to get the full effect..go to bed and get up the same time every day to help the brain settle down.

Try to get to a neurologist in your area who specializes in headaches. There are some places listed on my resources page, especially the link to specialists by region. Sadly there is no surgery (such as you described) at the present time, but a procedure in research is showing promise. This is the occipital stimulator placed at the back of the head. Dr. Begin in NYC is doing the procedure, as is Dr. Joel Saper at the Michigan Head and Pain Institute.

I wish you the best of luck and I hope you get the treatment that you need quickly.

Mary Kay Betz MS RPA-C

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Migraines For Weeks

by anonymous


Why do my migraines go on for weeks after my mva from a year and a half ago? I had tried all kinds of meds and my drs cant seem to find whats wrong and the MRIs come out normal.

Answer:

Hi,

If you are suffering from headaches after an MVA (motor vehicle accident) then you have a form of post traumatic head injury resulting in headaches. You do not have to have loss of conciousness for this to happen. The whiplash associated with this injury can cause headaches that may go on for some time.

Many times these headaches respond well to Elavil but what most doctors are unaware of is that the doses have to be worked up slowly to a dose higher than that used for migraine. Most migraineurs use 10-50mg/day..post traumatic headaches need to get to 50-150mg.

Migraines that go on for weeks at a time generally will not respond well to oral medications. In this case you would need and IV infusion of some medications to break the cycle of pain. Steroids, magnesium, anti-seizure drugs, are all used this way.

You might consider keeping a rigid lifestyle for awhile..low caffeine intake and going to bed and getting up the same time every day to help the brain settle down so to speak. The MVA and the headaches have irritated the brain. Also consider vitamin therapy of B2, Feverfew and magnesium.

All of the above together can help get your headaches under better control. If not..consider getting to a headache clinic for further treatment. Here is more information on post traumatic headache.

Good luck!
Mary Kay Betz MS RPA-C

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Migraine Headaches Daily

by Ms DEBORAH
(Tennessee)

Daily Headache

Daily Headache

I am hoping you can help me because I don't know where else to turn! I have suffered from massive headaches (migraines) for so long that I honestly don't know how long it's been. I can say that it has been at the least, 15yrs, but I'm sure it has been longer. I am strickened with these headaches EVERY SINGLE DAY. I can say, some days are easier to cope with than others, but none the less its a headache every single day.

I have been diagnosed with 'Migraines','Chronic Migraines', 'Severe Chronic Migraines' and have not figured out to this day what the difference is between the three.

I have been on several different types of migraine medication over the years (of which, none have helped) to the point I feel like a pharmacy and all it ends up doing is sedating you anyway. I don't want to coat the problem temporarily, I would like to remove the problem if at all possible (and be med free).

I have had CT Scans that came back 'negative' as well as MRI Scans, with the same result. I guess I should be glad that all the test came back negative and normally I would be (as a normal person should). However, it's hard to be at ease with negative findings whilst I still suffer from this same constant continuous agonizing pain every single day. It is not that I want for there to be something wrong, but plain and simple, something is wrong. It's not normal to wake up and go to sleep with a headache EVERY SINGLE DAY of your life. That is just not normal!

I was almost to the point of just accepting that its just what it is, but when you're taking migraine medication after migraine medication and nothing is working, something is wrong and I should not have to just accept the negative findings, I should know what is wrong inside my head that is causing me this much grief.

More recently (a few days ago), I have experienced a strange change in my headaches. Tuesday, I suffered from a 'left temple migraine'. Wednesday, when I awakened, the headache shifted to a 'right temple migraine'. Thursday (today), the headache moved to the forehead area and down into my eyes. Yes, I know this all sounds like a bunch of *** because if someone was telling it to me, I would probably think the same thing, but everything that I am saying is very, very real and very, very true.

The weirdness is that the headache literally feels as if its moving while in progress (again, sounds crazy but I'm trying to describe how it feels the best I can). As I type, the headache is no longer paining extremely bad in my eyes, but has shifted to the very top of my head. In reading, these were symptoms of several different causes, but all causes I have (supposedly) been tested for. Again, this is a change that started Tuesday and at this point, I am scared.

I just want to know what's going on with me. I do not at all exaggerate the severity nor the frequency of these migraines. It has gotten to the point that I don't want to go to the physician anymore for fear of being considered a hypercondriac or hypochondriac (whichever is correct). But Ms. Mary Kay, I assure you, every pain that I am having is very, very real. Please Help! I dont know where else to turn.

Important facts that I forgot to mention: I do not smoke; I do not drink; I also have some numbing and tingling on entire left side that comes and goes(had EKG, came back fine); and I am 40yrs old. I am willing to provide you with any other additional information needed to further assist me! These migraines are affecting me on my job, with my family, just my livelihood altogether. I am in desperate need of HELP!!
Thank you in advance for any assistance provided,
Ms DEBORAH

Answer:

Hello Deborah,

You sound very frustrated and in reading what you wrote I can understand why. You are clearly in status migrainosus which is a migraine that goes beyond 3 days without relief. You are much beyond 3 days (!) and as a result oral medications will have little or no effect at this point.

I suspect that is all that has been thrown at you..oral meds.

Although your lifestyle is quite good for a migraineur (I see ALOT of smokers!) you should be on magnesium if you are not on it now. Start at 200mg/ day and work up to 800mg/day by increasing it every week. Give it 90 days to have the full effect.

Tingling that comes and goes and is entirely on one side of the body is usually anxiety which has a high association with migraine.

Having said all this, you definitely need to be seen by a headache specialist, not just a neurologist. This is now a board certified subspecialty of neurology. In your area, Dr. Jan Brandes is a nationally recognized headache specialist. Here is her address:

Nashville Medical Group
300 20th Ave N Ste 603
Nashville, TN

I have met Dr. Brandes and she is quite nice.

You might also consider going to an inpatient clinic like Jefferson Headache Center in Philadelphia, but that would have to be up to your insurance company.

Clearly, you need a couple of days of IV infusions to break this headache and a combination of oral meds, vitamins and abortive therapies ALL at the same time. Remember, the most common cause of migraine, when all studies are normal, is stress. I have had patients change jobs because of the migraines and headaches virtually disappeared, so consider what is stressing you out and take a good hard look at the cause.

Good luck!
Mary Kay Betz MS RPA-C

PS No you are not a hypocondriac or nuts..you just in alot of pain.

Comments:

I am 40 yrs old and woke up one morning and just started having chronic migraines with aura out of nowhere. I have had 4 years of hell. Ive been on elavil and depakote. Now i am on topamax, vitamin regimen, and i take triptans. Nothing helps...somethin triggers my migraines and i end in a cycle and have to get iv infusions(dhe,magnes.,steroids,reglan,benadryl). Last year i had 8 infusions. My migraines always seem to get worse afterwards...pain stronger and last longer. I read that DHE can cause rebound headaches. Is this true? I feel like i always get sicker after the infusions than even b4 i startd them! I hate calling doc bak cause i feel like im botherin her but...should i just suck it up for a few more days? I just finished infusions on fri. And its Monday now. Its been one painful weekend! Help! P.S. i went through the migraine 3week imatch program at cleveland clinic in may 2011 and still follow my careplan...exercise,sleep regiment,triggers,biofeedback,and 3 meals,2snacks and water. I feel prettty educated but what more can i do! My life is very effected by me being a new daily persistent migraineur!

Answer:

Hi,
The Cleveland Clinic Imatch program is excellent. If you have not been back there in a while, it might be worth returning. (If you haven't seen them in over 4 months). Dr. Tepper is a great doctor, whom I have met, and I am sure he would want to know what is going on.

Good luck..
Mary Kay

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