Wednesday, September 17, 2014
Tuesday, July 21, 2009 Ann, Community Member, asks

Q: Status migrainosus for over 3 months, no hope of medical care in near future.

I have had a migraine for about 3 1/2 months now, which puts it well into the status migrainosus category. There is no chance that I will be able to see a doctor, let alone go to a hospital, for at least a month, probably longer. This migraine was triggered by scents, to which I still remain highly sensitive. I was not able to obtain any prescription medications at the time, so it is not a transformed migraine since I was not taking any medications. I did drink coffee, but only occasionally, perhaps a few times a month at most.

The pain isn't the issue as I have gotten used to it. In absolute terms, it varies from being twice as bad as having a tooth drilled without painkillers to ten times as bad, but I have gotten used to it. I am more worried about the possibilities of aneurysm / tumor / stroke / a hole in my heart / a heart attack.

Seeing as how I will not be able to obtain medical attention in the near future, is there any way to manage the risk of stroke or whatever else migraine puts me at high risk for? Should I drink coffee or not? What about exercise: good or bad? When I save up enough to get health insurance, does the migraine count as a pre-existing condition even though I have received no treatment for it?

Also, staying in bed all day is not an option, or I will never earn enough money to get medical attention, and furthermore, I would end up homeless anyway.

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Answers (8)
Nancy Harris Bonk, Community Member
7/26/09 8:38pm

Hi Ann,

 

This is a difficult problem for many people and I understand you don't have insurance to cover your doctor expenses. No, I don't have an answer for that problem. I wish I DID have an answer to that. I've been there myself and know how very difficult that makes everything. I can only tell you how I managed, which was to budget very strictly to get the money together for doctors.

  

A single Migraine that lasts 72 hours or longer with less than a solid four-hour pain-free period, while awake, is termed status Migrainous. You should see your doctor or go to the emergency room if a Migraine lasts that long. See Status Migrainous - The Basics for more information.

  

Most of the pharmaceutical companies have patient assistance programs to provide free medications to patients with no insurance who meet their income guidelines. Those guidelines are pretty generous. Try going to www.pparx.org to check on all of your medications. You list all of them on the site, and it will tell you which ones have programs you qualify for. It will then even take you through the process to fill out the application forms and print them. You then take them to your doctor for his or her signature and send them in.

 

Frequent use of triptans and NSIADs, and ANY use of opioids or barbiturates are associated with increased risk of transformed Migraine. See Transformed Migraine - Risk Increased by Some Medications for more information on this. 

 

Medication overuse headache has shown to be a factor in 80% of cases of transformed Migraine. Stopping the medication overuse is key to stopping the transformed Migraine. You can read more about this in Stopping Medication Overuse Can Halt Transformed Migraine.

 

I hope this helps,

Nancy

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Ann, Community Member
7/27/09 12:03pm

Thanks Nancy. I had no idea there were free clinics. Hopefully I will qualify. I'll be sure to ask for something that stops migraines and doesn't just cover them up.

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Jurrine, Community Member
3/18/10 10:24pm

I truly thought for the longest time that I was the only one that had this kind of pain! I have had my status migrainosus since christmas day!  I have been lucky enough to be able to see a neurologist.  We are doing anything and everything to stop it.  We have now started talking to my insurance company(state insurance) to be able to do the DEH treatment and have found out that they can do this treatment at home and not just in the hospital.  I see her tomorrow to see if they will pay for it in home or if I have to go into the hospital.  I have found out that DEH is a very old treatment for migraines but it is very effective!  I hope this information helps.

 

 

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cares, Community Member
7/31/09 7:01pm

Ann,

Your problem sounds alot like what happened to my daughter. She had what they are calling a status migrainosus for one month and had every test in the book. They gave her all kinds of medication and nothing touched her head pain. Finally, a wonderful neurologist came along and administered what they called a "caffeine drip", to break the cycle. It worked! Maybe you could go to the emergency room and get someone to do this for you. It has to be a monitored procedure due to increased heart rate. They also told her to drink a cup of coffee when she felt a headache coming on. Maybe you could drink some caffeine and see if it helps, until you can get real help.

I hope this helps you. I know that you are going through pure hell; from watching what my daughter go through.

 

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Ann, Community Member
8/ 3/09 11:44am

Thanks. Some people say coffee makes migraines worse so I have been afraid to drink any lately, but since it works for your daughter, I'll drinks some from time to time.

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eelbear, Community Member
2/ 5/10 7:29am

back in 2007 i went from July to October in a constant migraine.  After seeing many doctors and countless test, I finally got the chance to see a specialist at the Johns Hopkins Headache Clinic in Baltimore, MD ( http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/headache/ ).  He gave me a cocktail of 3 prescriptions which broke the pain from one continual headache 24/7.   Then he put me on topamax and I eventually weaned myself off it in 2009.  I now get migraines that last about 3-4 days two or 3 times a month.  Although I'm currently in a migraine since Sunday  (5 days now).   They never figured out why but One of the doctors there has a theory that if you take too many pain killers, over time your body will turn its defense mechanism off and when you then get a headache there is nothing to turn it off except let it run its course.

 

In my case I avoid caffeine and MSG, cold, flashing lights (strobe), bright light.  Those are some of the triggers I've discovered.  I dread the winter as I have a commute that requires lots of walking outside.   I found out any kind of narcotic pain killer is bad and often coming down off the pain killer gives a headache worse than when it started.  I do not take any OTC meds when I get a headache.   If you have a chance get yourself an appt with JH and make the effort to see them.  For me it was well worth the effort.

 

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eelbear, Community Member
2/ 5/10 9:18am

I forgot to mention sound.  sound isn't a trigger for me, but when I'm in a migraine such as now, earplugs are invaluable and sound seems to make it worse and me irritable.

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Monica, Community Member
2/13/10 12:49am

Though I feel for all of you (I have had migraines all my life but never for more than 2 weeks) I AM so relieved to read about your situation. You see my son is 14 yrs old and he's had a migraine now for 4 months! We have seen 3 neurologists, done MRIs and EEGs, tried several different medications but nothing has broken it so far. He is in constant pain 24/7. The pain is accompanied by vomiting and for some reason always gets worse when he eats. I thought it was the chewing, since that makes mine worse, but he chews gum and it doesn't affect the pain.

The day it started I picked him up from school and he was deathly pale, vomiting and his body temperature was 96.5F. This temp lasted for about 3 days.

All the doctors seem to thing this is impossible but 4 different people took his temp and used 7 different thermometers, yet all got the same result.

The good news is: no blood clots, no aneurysms, no tumor.

Just the constant and often debilitating pain.

 

Don't know what to do anymore to help him.

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migraine sufferer, Community Member
5/24/10 1:03am

My mom is coming off a 5 week migraine, diagnosis, status migrainosus.  Her neurologist, a migraine specialist, put her on a three day pulse of dextramethasone.  He also prescribed Indocin and Fiorocet for the pain until the cycle is broken.  I don't know all of your family history, but this has worked for her.  I am 46 and had a stroke in Feb. caused by a migraine.  Please treat the pain.  Your body is not supposed to be in that much that long.  Chemical changes actually take place in the brain and they can be damaging.  I hope this helps a little. Kimberlee

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Mississauga Mom, Community Member
3/22/10 3:32pm
My 12 year old daughter had a similar presentation to the other presentations and she received a number of in hospital and out of hospital treatments including tricyclic antidepressants, prednisone,beta blockers, iv drip of meds. What did work finally was BENADRYL around the clock 50 mg at time for weeks. It makes you sleep, impacts on your memory and cognition and motivation temporarily and lowers dopamine levels. During the three month migraine she picked up chicken pox while at the hospital and because she was on prednisone had many many lesions. We sedated her with Benadryl to treat the itching and the pain went away. We continued for many weeks with no doctor supervision or advice and it worked. Please check with your doctor if this is right for you. Reply
Kat, Community Member
5/ 2/10 11:26pm

I have lived with this condition for over ten years now so I understand the pain you are in.  I am lucky in that I do have insurance and access to medical care but unfortunately for me though I have been getting treatment since the beginning I am one of the *lucky* ones that will have this for the rest of my life.  I don't know anything to recommend about stroke risks, etc. but there are things that I can recommend that can help lessen the pain. 

I have found that sometimes alternative treatments actually work better than traditional drugs, at least for me since I'm resistant to most meds.  Massage is a good helper, I am lucky that my father is a massage therapist but this might be pricey for you, if you have any family members around I would recommend just getting them to try just rubbing your head.  You might also buy a reflexology chart (if you haven't heard of it it's a chart that shows a picture of the bottom of your feet and tells you where you have pressure points that will help with different ailments; pressing on certain places will help with certain problems).  It's an ancient eastern technique and it may sound crazy but it's been around for centuries and it has helped me and it's something you can do yourself.  I have found that a mixture of lavender and peppermint oil can really help.  I carry a tube with me and when I start to have a lot of pain I breathe it in and it really helps.  I also own an herb pillow (my brand is called a "mother earth pillow" but any brand would work).  Just find a pillow filled entirely with herbs, no other filler.  It needs to be one that can be heated in the microwave.  Heat it up and put it on your head.  Mine can also be chilled in the fridge, which my mother (a fellow sufferer) prefers.  You might consider a couple sizes.  I have a little one that goes across your eyes, one that wraps around your neck, and a big one that can sit on your head or chest.  They're not too pricey and they are my single biggest savior.  Talk to some kind of doctor (a free clinic etc.) before you try this because it is medication, but for me personally when I get a bad one what I do is take aleve, wait an hour or so and then take 2 advil.  I don't understand the chemistry but it works for me and it took me years to find the combo.  Since you can't do prescriptions it might help, but again make sure you check with someone first to make sure it's safe for you personally.

I really feel your pain here so I hope you are able to get the help you need soon.  Try going to a free clinic if you haven't already.  I know they aren't the best (understatement!) but it might be better than nothing and they might at least be able to make sure nothing more serious is going on and check you for those other risks you are worried about.

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Kat, Community Member
5/ 2/10 11:30pm

PS-I also discovered that I was very sensitive to caffine, basically allergic.  I have not had any caffine at all for over 5 years now and while not a cure by any means it has made a big difference.  This is just me personally, however, and I know for some people caffine actually helps, but you might trying going a couple months with no caffine and seeing if it helps you.  This will only be an effective test, however, if you have no caffine whatsoever so those couple of months.

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tee_tee, Community Member
5/11/10 1:42am

Had a migraine 10y/o for over 3 mths and eventually had a stroke that is very well defined on scans. Migraines have been relativelly well under control until recently but i have a headache every single day and i still work full time.

 

I suggest you see a doctor ASAP if not dont done so as yet.

 

There are numerous meds that can control your HA'S and give you back control of your life.

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By Ann, Community Member— Last Modified: 12/15/10, First Published: 07/21/09