Monday, May 28, 2012

Frustration and Feelings of Helplessness

By BAM Saturday, January 30, 2010

Frown I'm on my 4th migraine in a week's time.  They come in clusters around my period and last for several days.  It's quite discouraging.  I think about the fact that I'm only 46 and take multiple medications just to try and manage this condition! I take meds to prevent them, intervene or to just stop the pain.  Nothing seems to make a real dent.  I'm hopeful that menopause will take them away (they did for my paternal aunt), but what if they don't?  I have tried biofeedback, relaxation training, massage...almost everything.  I have not tried acupuncture.  That's probably next on my list.  I wonder how many out there share my frustration and feelings of helplessness.  It really is a life of living with chronic pain. 

Nancy Harris Bonk, Health Guide
1/31/10 4:25pm

Hello, and welcome to MyMigraineConnection.com!

 

I'm sorry you are suffering so, chronic pain is exhausting. It is really important to get an accurate diagnosis and treatment plan. And it also may be time to see a "true" Migraine specialist, not just a neurologist who says they are headache specialists. See, here's the thing, neurologists treat so many different conditions, like MS, stroke and epilepsy it is hard for them to be experts in one area. A Migraine specialist treats one disorder - ours- Migraine disease and headaches. When you get a chance take a look at this article, Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

 

Now having said all that what "multiple medications" are you taking? If I may ask? You see, if you're taking Migraine abortive meds such as triptans or any kind of pain med more than two days a week, a big part of your problem may well be medication overuse headache (MOH), aka rebound. See Medication Overuse Headache - When the Remedy Backfires for more information on this. If you're in an MOH situation, nothing you take is going work, neither prescription nor "natural" medications nor over-the-counter. If that's the case, you need to work with your doctor to stop the medications causing the problem.

 

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. I hope to see you there. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

 

Nancy Bonk
MyMigraineConnection.com Expert

 

1/31/10 8:21pm

hi there. i share your frustration. i'm 21. i started getting migraines 3 years ago. It was very sudden and very severe, one nearly every day of the week. For the last three years I've been living my life at a pain level of 7. Its frustrating. I 21 and I'm on 16 medications just to control everything.  My parents can't understand why, i'm 21 and pretty much on as many medications as I am years old. Living in constant pain is tough, we don't choose these lives. The lives choose us. Sometimes its hard to accept that. I have to say I haven't quite reached that spot to accept that and get frustrated. But I know that things always get better and that God will never give me more than I can handle.

2/ 2/10 5:29am

I agree with your thinking -- I often say that this is my particular cross to bear and that it could be worse -- it just is really hard on those tough days.  On those rare occasions when I have a headache free day or a lesser pain day -- I'm amazed by what I can get done.  You're less than half my age, so hopefully there will be even more research done and findings in the years to come to give you relief.

Anonymous
Summa
2/ 3/10 2:26pm

My great-grandma and grandma had what they called "sick headaches" from childhood, and me and some of my siblings and cousins got them too.  We may regard them too acceptingly as part of life's sufferings, but at least have ancestors to blame when a bad one makes you stay in bed, and others around to understand why it needs to be so dark and quiet. Having sisters, cousins, and aunts with them leads to occasional discussions about them, and identifying some clues about helping sometimes.

 

Sometimes for a few days ahead of time, I get some feelings or clues, like my vision seeming less clear or a little bit ripply like the freeway in summertime, changes in temperature hurting more than it should, sunlight hurts, back and arm skin feels sore, tingly, burning, tube lights noise that nobody else can hear causes ear pain, smell odd things nobody else smells, get constipated, have to pee a lot, feel queasy and hungry but not sure what for, worry more and get anxious more than I usually would, some sounds or colors cause nausea, unusual level of tiredness, muscle aches like having run a marathon or moved a bunch of heavy things when didn't, so when I realize these or other similar sensations are happening, I start drinking water, lots of it.

 

Hydration for some reason helps or can even head one off at the pass before it really gets here. Nothing with caffeine or carbonation or alcohol or sugar of any kind, except pedialyte, and water or smartwater.  WATER really seems to be at least helpful. Maybe I'm flushing something out of my system that contributes to the severity, I don't know. It also helps some of my relatives, even some who don't drink much water otherwise.

 

Then I avoid almost every kind of food for the days I'm feeling that "getting sick" feeling, like only eating plain boiled rice, applesauce, plain boiled chicken soup, peas, that sort of super simple no chemicals sick people food, because it seems not to aggravate anything and is very easy on the system. Even potatoes, toast, or spaghetti seems connected with feeling worse, but sure have to avoid nuts, chocolate, anything made with grapes or yeast, all meat except plain chicken or turkey or white fish, anything out of a box, bag, or restaurant, anything with salt or spice that I didn't add myself, everything really yummy dang it, but after a couple of days if I wake up knowing I'm better and I didn't lose a couple of days to the pain, it is well worth it. I eat small meals all day because not being hungry or too full seems to help most.

 

I usually boil a big pot of rice in the morning, and leave it on the stove all day, and just have that for every meal for a day or two, along with the lots of water. Maybe boring but also seems really nurturing somehow, like food for babies or invalids getting me better when I need the extra care. I love jasmine rice because it is very good all by itself while still being a mild white rice. Then I take plain raw chicken and boil it in distilled water with realsalt, a cretaceous era sea salt, and and maybe carrots and peas or greenbeans but nothing else. I know this is not a balanced diet and wouldn't do it for very long, this is just one of my best tricks to trying to limit the suffering when I feel a sick headache coming on. This rice idea is a family thing.

 

I'm sure you also do everything else possible, like hot bath with epsom salt, big sunglasses, warm comfy sweater, stay away from tube lights, stay home as much as possible, limit activity and stimuli especially noise and smells, etc. Sometimes there's nothing you can do, it just happens, and you just deal with it the best you can.

 

Last, for a few days or so, I try to make getting to bed early a top priority. I also take naps if possible, since for me getting extra sleep helps me resist or bypass the head-splitting-open-and-vomit-bucket phase. A lot of times I go from the blurry vision, achy, stupid, forgetful, clutzy phase straight to the mild headache, zombie, where-am-I feeling phase without the black cave of pain phase in the middle.

 

I know this is weird and might not work for someone else, but I really hope you figure out a method that minimizes your pain. My sister has not had much luck with the plain water and rice routine, but I have other relatives that did, but everyone is different and different things help or don't. My sister finds naps the most helpful, and hot baths. Whatever works for you, I hope and pray you find it soon.

 

Anonymous
jaimeleschats
2/ 3/10 2:54pm

I have most of the classic prodrome symptoms, with aura.  I get tortuously thirsty and need to drink almost constantly.  I wonder if something needs to be purged from the system, or if it's just my body going haywire.

 

A lot of common foods seem to make my headaches worse if I eat them when one is coming on, or if I eat too much of something when I feel fine.  Especially bacon, fried food, red candy or red drinks, chocolate, birthday cake, or peanut m&ms.  I try to be good then get tempted and pay for it later.

 

I use plain rice as a basic safe food, but I find yogurt and bananas help too.

 

 

Anonymous
Kathy
2/ 4/10 9:56am

I know exactly what you are referring to.  I'm 52, going through menopause and the cycle seems to get worse.  I am going to start journaling my days.  Two days after ovulation my last cycle(I don't ovulate regularly anymore)I had migraines for at least 6-8 days straight.  They began to taper off in intensity and I was able to control them with Excedrin.  But you are left feeling very tired and depressed, thinking is this the way my life is going to be?  I saw my doctor.  She is going to decrease my Hormone replacements(yes, decrease).  I may end up changing my meds for depression as well.  This week I have been pretty much headache free.  But I know what I have to look forward to.  She also suggested Biofeedback.  I am starting accupuncture- I've done two sessions. 

Anonymous
jay
2/ 4/10 10:09am

Hi,

   I've suffered from migraine from the age of 20 and it has been a very painful journey uptil now,so,i can really empathise with you. I'm 48 now and going through perimenopause,that is the years leading to menopause when your period becomes irregular.My worst migraines were hormonal too like yours and so now when i don't get my period for a few months,my headaches are minimal and mild.Smile I just wanted to give you hope that yours will soon get better and may be disappear too,because,i remember the way i used to look for hope in such forums.. Also,one more thing,i started using a herbal supplement called petadolex about a year ago and that helped to bring down the frquency and intensity of the headaches even before the perimenopause started,and i still take it anyway,because i'm frightened the headaches may return if i do. But, its perimenopause that has brought it down to this level where i feel i have control over my life again,i'm sure every migraineur will understand what i mean! Best of luck to you! Judging by your age,you'll be out of your misery soon!Laughing

2/ 4/10 10:19am

One more thing,i couldn't tolerate the side effects of the preventive medecines,which were mainly aniepileptics or antidepressants,they made me gain weight,lose hair,apart from others and i still needed painkillers every single day which affected my stomach lining and i developed gastritis,which is still a problem for me,so,i stopped all allopathic medecines and managed with petadolex and milder painkillers till now. Hoping and praying that the migraine disappears completely with menopause.

2/ 4/10 12:02pm

I hate to hear that you are having such problems. I had 4 migraines this last week as well. I, too, have been on many medications (I'm 38), and Botox made a dent as far as many of the migraines weren't as severe but overall it didn't seem to decrease the number of migraines. It is so hard to deal with--it's discouraging and so hard somtimes to have hope. I hope you or the doctors find something that improves your condition. I just wanted to let you know, there are others out here going through s--ome similar stuff--not that that necessarily helps. I just know I feel isolated sometimes by the pain. Lots of hugs, Krista

2/ 5/10 7:15pm

I appreciate all the feedback I've received and the support.  It's amazing how different this week has been compared to that awful week.  I feel like a completely different person.  I have tried increasing my water intake...and I can try the rice routine.  I will look into the herbal supplement as well.  I just hope that some day we have a better understanding of the science behind migraines and therefore the best way to treat it.

2/ 5/10 9:11pm

I'm 17 years old and have had migraines since i was 4, so i know how you're feeling. If it is always around your period, i would advise talking to your doctor about taking birth control meds. I have had menstrual migraines, and after trying a few different birth control meds, it helped. I still have migraines, actually i have had one since april of '09, but before this one, the birth control helped. Just don't give up, and every time you feel helpless, just think of all the people who love you and care for you, and all the other migraineurs out there, because you have our support.  Hope you find something helpful!

                            Migrainesufferer :)

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By BAM— Last Modified: 09/17/10, First Published: 01/30/10