Status Migrainosus

[jelybeans]

I have been diagnosed with Status Migrainosus.  I have a great neurogolist through the Mayo Clinic.  We have tried so many meds from depakote to midrin to toradol to vicodine to topamax to Iv fluid and many many many more(and I dont have insurance).....We have talked about DEH but it keeps getting put off....My triggers are smells and sunlight....I live in the dark at home everyday and I can't go outside if the sun is not totally down!  I have two children that I can not go out with and watch there sports or take them to the places they need to go!  I have had this migraine since Christmas day with no total days off.  It will lessen from time to time (the range of pain is from never going below a 6 but now always hovering at a 9).  Besides just needing to get my story out my question is when is enough?  How do I got about telling my doctor that I can't take the pain anymore and we need to do something to stop the pain?  I have been using the bandaid method four months now and I am afraid of withdrawls now when we do stop that part.  I just really want my life back and family back together (it's like they don't have a mother anymore).  Any advice would be wonderful!  Thank you

[sara12345]

What an incredible story.  You can count on your tragedy has ended.  If the symptoms come back, they can just try a different migraine medication.  So happy for you.  Menopause can do horrible things to a person.  I went through a difficult time myself, but in different ways.

BTW, when you put your cursor next to your name, it reads that you are male.

Feel free to write me personally.  I would sincerely like to hear how your life will change now.  

Sara

[Pij33]

hi.
have been suffering for the last 7 years with a plethra of unusual symptoms that finally left me unable to work, homeless, and suicidal. After 5 years of every medical, neurological, and psychological test possible and diagnosese from MS to Parkinson's to chronic anxiety from "some awful childhood experience my mind would'nt allow me to remember"...a resident walked in to the exam room last week and told me I had essentially been having a continual migraine for the last 5 years from an early onset of menopause...I'm 42. I started Topamax and Naproxen 7 days ago and I feel like I've just woke from a bad nightmare. I had no pain with my symptoms just this awful pressure like my brain was too big for my skull, a constant smell of rotting flesh, a constant taste of sinus infection down the back of my throat, constant dizziness, imbalance as if drunk, memory loss, vision loss, the list goes on and on...but today it was like my brain woke up suddenly! I feel as if I've been sleep walking through the last 7 years. Im excited to have this miracle of medicine, a bit apprehensive it won't last and I'll go back to zombie status. I didn't know this condition existed and I'm sorry for all who are currently suffering as I am. Will pray miracles are sent your way as well.
P.

[Dr Santos]

Hi,
How are you? Being a mother of two also makes me feel for you.I know you have been through a lot and have met different kinds of medical personnel in the past 4 years. Indeed there are plenty in the medical field who really want to help. In my experience, simple things like talking about what you feel have helped a lot of patients. A support group locally or even on-line groups with the same condition also helps.  Talk therapy, along with physical therapy and biofeedback therapy,  are important aspects of pain management that has been very effective. Pain management practitioners come from all fields of medicine including anesthesiologists, neurologists, physiatrists or psychiatrists. Try to hang on and stay positive always. Take care and do keep us posted.

[karclaymom]

I'm so greatful today. Greatful because I've not "met" or heard of others like me.  I have two children, and I agree that sometimes their life is almost like not having me around.  I have been hospitalized a LOT to get by - sometimes up to a week. It's a burden to bare, but it's also a heavy load for those closest to me and end up taking care of me. If I'm having an attack I can't go outside, I move very little - and looking at a tv or computer screen (which is where I get to see my kids enjoying life), I have to wear sunglasses.  It's humiliating and embarassing to be 31 and on Disability because I can't hold a job or function normally. And trying to explain that to anyone at all, is like feeling I am worthless as a human being.  I try to remember to take one day at a time, but sometimes I can only do 1 minute at a time.  I have Pseduotumor Cerebri - which is increased pressure in my brain/spin because of an overproduction of CSF. So about 1 time a month, I have to have a spinal tap to drain fluid. The pressure is generally 3-4 times what is "normal". I have chronic daily headaches since having my daughter in 2004. I went to MAYO clinic for help, and they gave me a complete hysterectomy.  About six months after that I had my first Status Migrainosus episode - where I wasnt getting normal relief, not even a little. It lasted nearly 3 weeks and then it started releasing. I give props to both of you gals who can go so long without being admitted. I must have a low tollerance for pain because I almost cannot go more than a week without being see in an ED or my Neuro's office. I try to just come to terms with : this is my life, I have to get used to the pain and go on. But it seems to be a feat I can not conquer.  My husband is amazing - but how he doesn't storm off and leave me is beyond my conception! I have become another dependent that he must care for - and he has yet to show me any resentment....but I know someday that grace will fade.  Anyway - I don't talk about this much....I can't really relate to anyone - such as other mom's - it's hard for them to imagine, and I find that they never know what to say - so I usually just keep quiet.

And Santos, thanks for your well intentioned words of advice regarding alternative methods for treatment.  I have actually done all of those things - I still see my biofeedback therapist 1x a week, and work with Physical Therapy on back issues related to not enough activity and fibromyalgia pain.  I find that most doctors or specialists want to help, but don't know where to begin, some think they have seen it all and so they blow me off as not having real problems because they are unable to fix them....and a lot of inbetween.  I just don't know where to go from here - and I'd almost rather The Lord took me back to heaven to have perfect peace, than to go through another S.M. month, or see the next cure my neuro has heard of.

[Dr Santos]

Hi,
How are you? I'm sorry to hear what you've been through for the last few months. It is really difficult to be not there for your kids because of this headache. Dame has pointed out possible management with this type of migraine. Have you tried complementary and alternative medicine such as biofeedback, self-hypnosis, acupuncture and other relaxation techniques? Some headache sufferers get relief with these method of management. The National Institute of Health has done many studies regarding this method of management and also showed favorable results. Take care and do keep us posted.

[dame_wilbur]

I've had status migrainous since '01. It stinks. I'll tell you that the first years are the hardest. After a while, your body rewires the brain to think that pain is normal. I'm not saying that it gets really easy (I'm on SSI as I can't work or go to school) but it does become the status quo and something that's possible to live with.

Sometimes the bandaid method is the only one that works, as much as that's distressing. I'm on 11 daily meds to control the pain, to some extent, but it's always there. As I've said, you get used to it.

Have you tried different tints of sunglasses (or multiple layers?) and a hat for going outside? And on the off chance that you're wearing sunglasses inside the house like I did, it's best (although really sticking) that you stop. It's a matter of your eyes thinking that that darkness level is normal, and then the sun is even more of a shock to the system. There are some light bulbs that look blue when turned off that give a softer light than the bright white ones, which actually have a yellow tint to the light. I think the soft ones are call "true light" or something like that. I've installed those, and they help my mom and me compromise to have lights on in the house. They're still bright to me, but they're actually a softer light.

If you have any questions you want to ask, you're welcome to message me. Like I've said, I'm a veteran in this kind of battle.

*hugs*

~Dame