Constant Migraine--People Can't Relate to it

I've been in constant severe status migrainosus for 4 solid years. Excruciating pain and nausea that never varies. The only way I can function at all is with pain management.

I've been getting migraines for over 20---since my late teens. By about age 22, I already was having migraines 50% of the time.

I used to have prolonged stretches of status migraine that would last 4 months or so. Then the hell would magically end. Then I'd have 6 months totally pain-free and I could have a 'normal' life during those months. (I couldn't hold down a job with this pattern. I spent most of my time getting through college, which took a long time. I had to keep sitting out semesters, due to illness).

My biggest nightmare was the migraines ever going constant and NEVER ending. Part of me just didn't want to believe that such a thing was possible. Well, I'm now living proof that migraine pain can indeed be both CONSTANT and SEVERE. (I have no life due to the migraine pain. I constantly feel so ill that I can barely leave the house).

Nobody seems to understand the living HELL of status migraine. My mom mentions to doctors or nurses that she has a daughter who suffers from 'status migrainosus' and she just gets a blank look. They never even tell her, "Sorry to hear that". So even doctors and nurses don't have a clue how debilitating this condition is! (I never got much sympathy from doctors, either. My pain doc is the only one who is sympathetic and who understands my intense suffering).

I actually have a friend who is a nurse and she gets mild migraines. The sort of migraines where she can pop a Relpax and the migraine goes away. She uses the words 'migraine' and 'headache' interchangeably. She'll casually say things like, "The sunlight is giving me a headache", but she's never needed to take any opiates or go to the E.R. She's never needed to miss a day of work due to migraine. She's married, she travels, she works---we have two completely different 'illnesses', so to speak.

There is SUCH variability in the severity of this disease. I think that's one reason why the general public has no understanding of status migraine or severe migraine.

Then there's that new TV commercial, "I'm glad I got a migraine. Now I can take Excedrin"--or something along those lines. It makes me want to scream and cry. No wonder people don't have a clue about the suffering caused by migraine---they see TV commercials like that!

My pain is so severe that it hurts to look at the computer. It hurts to read. Migraine also affects my memory and cognitive abilities. When in migraine, my short-term memory is badly affected. (During my migraine-free periods, I always had an excellent memory). But now I'm 'in migraine' ALWAYS. So I forget things, it's a struggle to get out of the house, I can't work or go out---this is my life, 24/7.

I no longer have any 'good' months or even 'good' days. 24/7---debilitating migraine. I have to talk to people, do my grocery shopping, pay my bills---all while in the midst of the severest pain I can imagine. (If not for my pain doc, I would want to die.) Even WITH meds, the pain is severe.

No one seems to understand that migraine affects memory. So I've had friends get kind of indignant and tell me, "I already told you that story", like they think I wasn't paying attention or something. I'm paying attention, but my short-term memory is not good at all due to constant migraine. Also, when one is suffering intense pain, it can be hard to concentrate or focus on anything.

Status migraine has completely ruined my life. I wish the general public knew how debilitating this condition can be. And any doctor or nurse should know that 'status migrainosus' is Latin for 'constant migraine'. Maybe they don't believe that there is such a thing? It's not in the medical textbooks. All the books say that 'migraines typically last between 4 and 72 hours.

Every once in a while a textbook offers ONE SENTENCE on 'status migraine'--"an extremely rare and severe form of migraine, characterized by intense pain and nausea, lasting over 72 hours, often leading to hospitalization of the patient".

Nobody deserves to suffer with this excruciatingly painful condition. It's HELL on Earth. I just wish that there was some compassion from the medical establishment and from people in general. Not just a flippant, "Are you still getting those headaches?"

Is there any way to 'educate' friends and family, or is it a losing battle? The only person in my life who has compassion for my suffering is my mom.

All I ask for is a bit of understanding from people---but no one else seems to understand this disease. I'm in too much pain to leave the house. I can't go out to noisy clubs or restaurants. So I'm unable to attend a friend's birthday party, due to illness. Maybe the friend thinks I'm being anti-social or I've lost interest. Who knows? I try and try to explain that I'm in severe chronic pain, but I probably look pretty 'normal'. That makes it even more difficult for people to understand how ill I really am.

It's getting difficult to have or keep any friends at all. I can talk on the phone or email. I'd love it if someone would visit me in person, but I don't know anyone who wants to just come over to my house and talk (other than my mom). People want to go out and do things. If you are unable to go to loud parties or spend a day at the beach, you find yourself becoming more and more isolated, because people stop calling or inviting you out.

How on Earth do you get people to understand chronic pain illness? Pain and nausea that is constant. Severe migraine is the just about the most debilitating condition I can imagine.

I am so sorry that you are suffering so badly and all the time.
I am sure that you have tried everything, to make it better. So, I am writing mainly to tell you that I believe, absolutely, in everything you say.

This might not mean much, because I have no practical suggestions for you how to make it better, but I am terribly sad that you not only suffering, but find so little support and care, from people whose job it is to help you.

I know from reading this pages, and from the experience of a friend who suffers from a constant high levels of pain, that such lack of understanding from professionals, and family members, is in fact quite common. Still, it makes me angry whenever I hear how badly M sufferers are treated - we live in a cold and ruthless world, where nobody seems to care, unless it is in their own interest. Of course, there are exceptions, good friends, decent professionals who try their best, but mostly the fact is, that we are on our own.

This site is one place where people understand how you feel.

So sorry to hear how bad it's been. Yes most people don't understand how serious migraines can be, or don't know what do about it even if they do. So it's better not to waste too much time worrying about them. They are just clueless. Save your energy for worrying about getting your self well, or at least managing the symptoms as best you can.

I'm glad your mom is supportive. And you will certainly find a lot of support here. If your doctors don't get it, it may be time to find some new ones.

Not sure what all you have tried. If the preventatives have not worked, you may want to look into bio identical hormones. They helped me quite a bit. Not a cure, but certainly much better.

I'm so sorry you suffer like this. I have had migraine that goes back and forth between mild to very severe for a week or more at a time but never constant as you are enduring. All I can do is to offer to pray for you and I will do that. Sending hugs.

I have gone through pretty much the exact same thing. My migraines I have had since I was 12 (im 28 now) but they only got worse where they are constant about the last year. I used to have a great job but had to leave it because the pain got so bad. my pain dr don't seem to care and one visit calls it a migraine and another visit calls it occipital neuralgia then another calls it both. He don't believe in pain meds. Since I had to leave my job I lost my insurance and signed up for Obama care but it wont start til November 1st so I have been suffering for a few months. I have had 3 injections into the occipital nerve. didn't help. I have had nerve block of occipital nerve on both c2-c3 helped a little so did a rfa (nerve burn) to the same area and it didn't help at all. I have to rely on my mom and fiancé to support me because I can't work. Getting out of the house is impossible. I feel so useless and it has only worsened my depression. I came on here to see if others have one through this too. I pray you get relief because no one deserves this.

If I didn't know better, I thought I would have written what you just wrote! I have been having migraines for 46 years and counting. They are nonstop, 24/7, just like you. I have tried every med available, and also had botox injections twice earlier this year, with no relief. It totally wrecks your life...if you can have any kind of life with these horrible h/aches! I can't plan to do anything for sure cuz I know I will be in such horrible pain, and that will keep me from going out and doing something. Friends and family have stopped even asking me to do things with them, and that is hard on my feelings, but I understand how they think. Sometimes I try to double my meds. hoping the sudden extra jolt of more pain meds, will stop the migraine but this never works either. NOTHING WORKS!!!!

If someone has never experienced a migraine, they have NO idea what we are going through. My husband is very caring, and understanding. He had a migraine when he was 12, and still remembers the pain and how awful it was. He is very patient with me cuz these migraines have affected every single area of being married..I know you understand what I am saying here without having to spell it out to others. There are days I ask him to just leave me cuz my way of life is never ending with 24/7 pain, dizziness, nausea and just plain trying to exist somehow. It's not a good way of life for sure.

I am so sorry to learn of another person living and trying to get through the migraines on a daily basis. I wouldn't wish this on my worst enemy, and keep hoping that some day, something will come along to help us. Until then, I am here for you and really understand what you are experiencing. Take care. (If you want to email back and forth, let me know and I will give you my email address.)

Thanks for all of the kind and supportive replies. Glad that people here understand just how horrible unrelenting severe migraine pain can be. It does effect every area of one's life.

To clarify: My pain doctor DOES understand my agony. It took me 20 years of suffering before I was finally referred to a pain doc. (The suffering was intermittent, so I just kept going to neuros who didn't help me). Now that the migraine pain is constant, my pain doc is a Godsend.

I'm starting to wish that when I was a bit younger I'd gotten married. Now that I'm constantly ill I can't even think of going out, let alone dating. Still, it would take a very special man to stay with a constant migraine sufferer. If I'd gotten married, I may well have been ditched by now. I know that sounds harsh, but it's the way of the world. Other people are healthy. They want to travel and go places on the weekends. Why would anyone want to be with a chronic migraine sufferer? For those whose significant others HAVE stuck by them, you're very lucky.

My mom understands my pain, but she is 78 years old now. She's also recently widowed and is having lots of problems due to that. Financial problems, too. My dad sold our house years ago, so we both have precarious financial futures. It would be tough for us to live together, but I'm starting to think that may be my only choice. We'd have to find a home, which is more work than either she or I can handle.

I'm so ill and my mom is now elderly. I'm the only child who's helping my mom with anything. Neither one of my brothers has done a thing to help my mom. Now that my mom is elderly and a widow, she's lashing out at anyone near her, and unfortunately I'm the only person who is around her. (It's NOT easy!).

4everdoll, I am so sorry that you are going through the same thing with migraine. I would not wish this suffering on my worst enemy, either. PM me, if you'd like. It would be nice to have a migraine 'email pal'. This is a lonely existence.

Thanks,
Brenda

I am not sure what PM means, as I am not really smart when it comes to using computers. I know the basics. So, if you could explain what PM means, I will try to get in touch with you that way. Or, please feel free to contact me at my email address: 4everdoll@comcast.net. Hope to hear from you....Nita.

I am sorry to hear about your struggles – I wanted to post because my wife has gone through a lot of what you have gone through and after 25+ years of headaches (10 of which were spent with me), we found an answer. My wife is 34 and has had bilateral migraines (not always both sides at the same time) since she was 5 (they ran in her family, but none of her relatives’ pain was like hers). They got progressively worse (usually between 8 and 10 out of 10 on the pain scale) and nothing worked – she couldn’t take Triptans, and for the past 6 or 7 years, the only thing that would break the headaches was ER visits for IV narcotics. She tried preventatives and everything else in the book. Eventually she went for peripheral nerve decompression and sinus surgery with Dr. Guyuron in Ohio. This did not work either (the sinus surgery did) – after eight surgeries, she had enough. About 6 months ago, I looked into other kinds of facial pain and the possibility of a misdiagnosis. I considered that perhaps it was some kind of Type II, or Atypical Trigeminal neuralgia (no shocks, just pain).

I was going to bring her to Johns Hopkins, but noticed that most people that went there who had Atypical Neuralgia (or “really tough cases”) were referred to Dr. Jefferey Brown in Long Island, NY. We went to see him in the early springtime with no expectations. My wife had a “Thin-slice MRI” before seeing Dr. Brown. This newer technology is usually used on Trigeminal Neuralgia patients to determine if there is internal compression of nerves in the brain. He diagnosed her with chronic bilateral intractable cluster migraines. Sure enough, the scan located two arteries (one on each side) that appeared to wrap around her Intermediate Nerve. Dr. Brown indicated that two microvascular decompression (MVD) surgeries (performed separately at least six weeks apart as long as the first one was working) would be the next step. She had the first one in June (left side), followed up with Dr. Brown two weeks later (pain-free on the left) and her second one in August. In both cases Dr. Brown located and moved the offending artery off the nerve and put teflon between the two. My wife has not had debilitating pain in at least eight weeks. She gets a “regular” migraine about once a week – she says they tend to hang around a level 3 (out of 10) and one or two Fioricets knock it out within hours. Her life has changed dramatically and she has been fully functional (even exercising) since the end of her recovery.

It’s not an easy surgery by any means – it’s brain surgery and the recovery for the first 10 days (3-4 of which are in the hospital) or so is difficult. But, if you are truly where you say you are, the least I can suggest is to go see Dr. Brown and have the MRI. He is a kind man who has performed a miracle in our lives, and, as an added bonus, everything was fully covered by our insurance company (unlike the peripheral nerve surgeries, which is hit and miss). He has arrangements for out-of-town patients, and I would see him regardless of where you live. My wife’s neurologist is now going to be sending some of his more difficult patients to see him. I do hope this is somewhat helpful and you find some answers.