In need of help

By Ericaneedshelp Sunday, January 18, 2009

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In March on 2005 I was at work and got the most horrible headache I had ever had. Not knowing at the time what was in store for me. After the headache persisted and the nausea came(which is the only time I've had nausea with my migraine), I went to the E.R. I never was the headache type, the occasional sinsus or whatever but not like this. In the ER they did a spinal tap to rule out meningitis, which in turn led me to leak spinal fluid out of my head for 3 days causing the worse head pain in my life. I had to lay flat on my back, or if I did get up I had to walk with my head bent way over. Then they had to do a blood patch to stop the leak, now for those of you who don't no what this is, because I didn't until then pray you never have to get it done. They have to take blood from your arm and inject it into the exact site in your back where the spinal was done, worse pain in my life. Much worse than labor any day. But after all of this is when I was diagnosed with migraines.

For the past couple of years my migraines have been pretty predictable, almost every 3 months and they last 3-5 days. I don't get an aura, nausea, sound sensitivity and I don't have to be in total darkness. My pain is always in the same place, above my right eye, along my eyebrow per say . It never moves, travels to other spots in my head. I know when it's coming most times and I do have to be very careful around people with strong perfumes or cologne, which I found are triggers. I have had MRI, CTscans,had my eyes checked, I have been hospitalized last February and given DHE (which seemed to work at the time), I have seen chiropractors and massage therapists. My neurologist has tried me on Immitrex, both pills and shots, axert, maxalt, mignal, topomax which I still take 100mg daily and nothing seems to work.

In November of 2008 my migraines started getting closer together, once a month , then once every 2 weeks and lasting longer. I am on day 20 of this migraine and was just taken off Homecare IVtreatment of DHE after 3 doses for chest pains, not sure why it affected me different this time but it scared me, to think that I am 34 tears old and I could have been having a heart attack trying to get rid of my migraine.

I'm at my wits end, I'm tried of missing work. My family I'm sure is sick of me laying around on the couch doing nothing. If anyone can offer any kind of insite or help I would truly appreciate it.

Thanks Erica

Comments (9) | Add comment

Anonymous

1/18/09 3:05pm

Erica,

While I am only 18 years old, I have had migraines for as far back as I can remember. I was clinically diagnosed at the age of 13. For many years, I treated my migraines with simple OTC painkillers like Excederine. In November of 2007, however, I got a migraine that never went away. My pediatrician brushed it off as tension. After a month of nonstop migraine pain, I was finally able to find a neurologist that would see me. I spent the next few months taking every kind of medicine combination one could think of- Frova, steroids, Tylenol with codeine, etc.. I, like you, was admitted to the hospital for IV DHE, Reglin, and Fieroset. This helped for a couple of days but I was still in constant pain. After a few other pain killers, a four month-long (and ultimately unsuccessful) diet regime to find out my food triggers, ten shots of Botox in my forehead, and a change in the anti-depressant I was taking, he finally recommended alternative medicine. For five months, I tried what is called "Touch Therapy", or the manual manipulation of arteries, tissue, and oxygen flow. It sounds sketchy- simply placing your hands on someone's arm, leg, abdomen, or head and suddenly you're healed. And while it didn't completely cure my headaches, it did help. I was unable to continue working with my therapist due to financial circumstances, so I never quite completed my therapy. By that point, I had just graduated high school (nearly missing the ceremony due to debilitating pain). Of all the months I spent in agony, I only missed one day of school. Everyone (including my teachers) always asked me, "How do you put up with it?" and my reply was always, "I don't have a choice." That summer was the worst. I had a 8-5 job- I don't think I went in a single day on time. The pain was so bad, I spent my summer hiding under the sheets, crying on the phone to my mother (I was living at my aunt's house) about how I'd rather die than spend another day taking either 2 Fioreset (you're only supposed to take it once a month) a day, or six to eight Excederine, just to make it through the morning. I went to the hospital two more times, got my head scanned, got an LP, got blood tests, got an EKG. Everything was clean. So I was sent home. I started seeing a migraine specialist who tried Depakote, muscle relaxers, Zonogran, magnesium, a plethora of triptans, IV treatments of DHE, magnesium, and benedryl. We tried a bubble test to see if there were any holes in my heart (a very common source of migraines, especially if yours are accompanied by auras). That was clean.

I am now in my second semester of college. I still have a headache every day. I go through good days and bad days. I see a massage therapist twice a week. I take anywhere from 15-20 pills a day. I am looking into physical therapy, acupuncture, and a chiropractor. My mom and I keep working on eliminating triggers. The best advice that I can give to you is not to give up. There is a lot of information about headaches out there. But everyone is different. Food triggers and hormones are two of the most common sources of migraine headaches. The best way to figure out your triggers is to keep a diary and write down on the days you have a headache how bad it was, what you ate, how the weather was, and if you were on your period. Having this information when you see a doctor can make your visit a million times easier. Botox has also been found to be 90% effective in eliminating or significantly reducing migraines from 3-6 months. I, unfortunately, was in that unlucky 10th percentile, but I know many people who swear by it. Also, I frequently receive what is similar to a Cortisone shot in my neck and shoulders where I have a lot of muscle tension. These are also helpful in reducing my pain.

I hope this is somewhat helpful for you and I wish you the very best in finding a solution.

Lacey

Ericaneedshelp

1/18/09 9:10pm

Thank you so much for your response. I feel so bad for you I cannot image being that young and having to deal with this horrible condition. Good luck to you, I can say while I was going to the chiropractor it did help, but it was very expensive and as soon as I stopped the migraine came back.

Elle

8/19/09 2:21pm

Hi Lacey,

I am also a migraine sufferer and can relate to your pain! When I read your post I was inspired to post since, while a bit older than you, I too have gone down a similar path as you in trying to find migraine relief.

I have experience migraines, in some form, for at least for twenty years, and they peeked about 5 years ago when I had a migraine daily for several months. I was surprised to learn that the reason I couldn't get out of this "migraine cycle" was because I was actually at that time experiencing "rebound migraines" that were being caused by some of the medications that I was using. While I was aware of the rebound effect being an issue with over-the-counter meds, what I didn't realize was that my frequent use of triptans could cause the same affect, until I had changed Neuorolgists (my old one never told me this!).

So, in order to break the cycle, my new Neurologist put me on a 10 day course of Medrol, which worked fantastically. Also, I reluctantly began taking Topamax as a preventative measure. Unfortuantely, since I had experienced some of the adverse side effects of Topamax, I was never able to reach the full dosage of 100 mg. as recommended by my Neurologist, but rather went as far as I could which was 50 mg.

The Topamax worked wonders for me for the couple of years, and then unfortunately I started having some increased side effects when I began taking Synthroid when I was later diagnosed with hypothyroidsm.

I just finished weining off the Topamax, and my migraines aren't too bad. They are mostly menstrually related, so my doctor had me using and Estridoil patch during the times when I am susceptable to my migraines, which is mostly the week before my period. He has also recommended that I add Vitamin D3, Ubiquinol CoQ10 and Magnesium as well. It is too early to tell if this will work, as I just started.

Anyway, I wanted to share my story with you as I can relate to what you and everyone who suffers with this dreaded condition are going through. I hope in some small way it helps and I hope you feel better soon!

Elle

Nancy Harris Bonk, Health Guide

1/18/09 10:28pm

Hello, and welcome to MyMigraineConnection.com!

I'm glad you've found our site, although sorry the reason you have to join us. We have plenty of information and support here about Migaines and headache disorders.

Please don't give up hope, it may feel like you have been on lots and lots of different medications and treatments, there are many more available - over 100 medications in fact! Read our article for more information: Preventive Medications - Too Many Options To Give Up!

Neurologists may be fine doctors, but Migraine specialists devote their entire practice treating patients with Migraine disease and headache disorders. These doctors are on the cutting edge of new treatment options and diagnostic tools.

You can think of it like this - when a pipe under the kitchen sink breaks, you call a plumber the expert - to fix it. You could call a handy man who would fix the pipe, and then he could also fix other things in the kitchen that needs fixing, like the cabinets, paint the room and so forth. Neurologists (sort of like the handyman) treat so many different conditions it is hard for them to be experts in anyone area - whereas a Migraine specialist (the plumber) is just that - an expert treating only Migraines and headache disorders. Keep reading for information on: Migraine and Headache Specialists - What's So Special? After reading that article you may want to look for a Migraine specialist, you can look at our patient recommended specialist list HERE.

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. 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

Tana

1/22/09 9:18am

I have had migraines all my life. I am 62. Right now I am having the best migraine free period I have ever had. I've gone 20 days without a headache! Yahoo.

Keep trying. I recently started acupuncture again and find it very helpful for me, along with a new preventative that is a muscle relaxant, "Tizanidine", and a VERY STRICT DIET. Be sure to research all the available info on diet.

Be in touch with other migrainers and keep on your Dr.s. Reach out. You are not alone and there is help available.

cyndee

1/22/09 12:49pm

Erica- My migraines started sporadically when I was about 28 yrs old (1984), increasing in frequency until they became chronic. I had a misdiagnosis (sinus problems) and then a migraine diagnosis (2001) coupled with poor treatment until recently, when I went finally found a migraine specialist. My past triggers included alcohol/sulfites, weather changes and hormonal fluctuations.

This past year my migraine frequency seems to have subsided, I am not sure exactly why. I was having high pressure and put on Norvasc which coincidentally helps with migraines so that could be a factor. Also my migraines have been decreasing as my menstural periods ceased. I would suggest you have your hormone levels tested. I wish I had done this because I now think this was my biggest contributor to the problem. If this is an issue for you, then you might want to research bio-identical hormone vs. standard hormone treatment. This is the current controversial medical hot topic that is being discussed on Oprah and in books and magazines.

I am not currently taking hormones but if my migraines return I will be looking into this. So far menopause has been a blessing.

Cyndee

Barbara

1/22/09 2:37pm

I have been suffering the worst with my migraines since 2005 myself, although I first started to get the ocassional migraine back in the 80's, the med's just plain worked better or I've gotten more stressed or hormonal. For the last 2 years I have been on either Elavil or Topomax with Butalbetal for the pain but nothing seemed to work like Migra spray. I get it from my chiropractor. It seems to work better than any medication because it works the fastest, give it a try & good luck.

karen

1/22/09 3:21pm

You note there is a pattern of every 3 months with 3 days of headaches or so, even though the pattern is changing and the episodes have increased. I can tell you that patterns might helpful to what's going on, as that's where I found clues and what I had to go on to find causes or remedies. Not all my clues led me directly to the answers, but put me on a path to other clues and it made me pay attention to things I wouldn't have otherwise noticed. Patience is important in tracking, as I often quit tracking when I would feel good. I used to track trigger-type foods and headaches, but now I track more, such as how I feel when I get up, what doesn't feel good, my activities such as walking, stretching, weights, yard work, heart pain, blood pressure, when I take each medication, etc. This is now helping me with finding clues to other situations. Save what you track as it allow you to see a clue/connection a few years later. I track each week on one sheet, altho I've also used a sheet per day at time. At the end of each day I highlight things I think are key to the day. Sometimes, I summarize a week in the same way.

About 7 years after my migraines affected my daily life, I no longer get the daily/frequent migraines because of a gluten-free diet. I'm not sure how gluten does this but it seems to happen thru inflammation. I can still get a migraine if I make a mistake, as gluten takes many forms, but recently the migraines are only headaches again....as I was diagnosed 6 weeks ago with a Vitamin D3 deficiency and have been taking supplements, 1000 iu per day. I have some type of restored cell balance that helped with the severity of the migraines, reducing them to a lengthy headache. Estrogen levels played a part in this but I no longer believe this is a culprit. There still may be other chemicals playing a part.

While a Vitamin deficiency may have played a role in the strength in which I "felt" the pain of the migraines, there was something else too. I had also INCREASED the gluten in my diet because I increased my whole grain intake. We all used to eat white bread or just refined grains, which reduces the amount of gluten. Good advice from a doctor...increase my whole grains, to add more fiber to my diet for intestinal health...but the result was not good in another way, as my migraines became more frequent and severe. I never saw the connection of that good advice with increased/worse headaches until 5 years later. You'll see in my story how some clues take you down paths, some helpful, some not. Had I tracked more and saved the info, I might have seen correlations sooner. Recently I told a doctor about my sporadic thigh muscle, butt muscle, hip, and pelvic pain, that I didn't feel energized with exercise- he saw a connection to Vitamin D. I hadn't tracked all of this pain, but because I was tracking other things, I became more aware of my body and was able to look backwards and remember some things.

The other good things that resulted from increasing my Vitamin D3 - it eliminated my fatigue and has improved my mood. I used to take a nap each afternoon, but now I don't. Just in today's news I heard a medical report that links MIGRAINES to depression. Well, my low mood and motivation level was improved after about a month on V D3, although I'll have to experiment with more to see if I can gain more improvement. I still don't have an energy level that I had 10+ years ago. I made many efforts to fix the fatigue and mood thing, but V D3 did it. Another good thing about V D3 is that it eliminated my cravings for sweets. Vitamin D3 is tolerated at higher levels than 1000iu per day, although I have to take with a meal to avoid some discomfort in the duodenum, the first section of the small intestine.

MORE OF STORY

Since I was young I had headaches that were probably hormonal and they would go away with a nap or aspirin. Alcohol-related hangovers were more like migraines. Around age 36 I started getting a migraine if I didn't have lunch by 11:30am and other stuff, which I tied to being on a strong birth control pill, especially since that disappeared when I went off that pill. Many of my headaches were often tied to estrogen by doctors and myself. Over time I learned it's just one piece of the puzzle.

About peri-menopause time (age 42) I noticed many little annoying physical changes including fatigue, but a real annoying one was sinus stuffiness and swollen glands/throat in the week prior to my cycle, and maybe once or twice on other days during the month. Gradually these stuffy days became migraine days (age 47), whereas previously I only would get a bad headache the day of my period and a lessor one at the end. (It's here that I should have made the connection that as I ate more whole grain foods, my headaches became more frequent and severe...migraines...but I didn't.)

I started seeking help for migraines - took triptans, started tracking when they occurred and possible triggers. Of course, more can happen... rebound migraines, which makes it all worse. I took a medical leave, thinking it was work-related stress, but nothing changed. I quit my job, thinking it was unconsious stress and that I would get over it then find another job within a year. My headaches didn't go away and nothing changed. I laid in bed 3-4 days of each week with migraines and only used triptans twice per week to avoid 7x week because of rebound headaches. (I was still on gluten at this time.)

Neurologists and doctors help with a med to take away the migraine, and then to prevent them, and we all go thru lots of different drug "trials". One doctor put me on Claritin, as he thought it was an allergy. The Claritin worked, but if I forgot to take the Claritin...within 3 hours I'd have a migraine. This wasn't a great solution and it was a clue for go me to a sinus doctor, ENT. She ordered allergy testing, but the allergist didn't test me for foods and didn't discover the link of wheat and migraine. So, I went ahead with sinus surgery which didn't change anything. I went to a neurolgist again. He had me try different things and one "preventative" medication was a blood pressure med, Covera. During the first month of use, I had 4 migraine days instead of 15 days, so Covera seemed to work as a preventative remedy - altho it really wasn't the answer. He wanted to try another drug then, but I was changing my health insurance and didn't follow thru with that. I figured it out a few months later, that it wasn't the Covera, but that I was on the Atkin's diet (in support of my friends), which eliminates carbs such as bread, cookies, etc. which is close to a gluten-free diet. The gluten caused my headaches but tracking food triggers didn't find the connection, as wheat is incorporated into a daily diet in many different food forms. My cycle and wheat/gluten came together on some days. Tracking helped with understanding the frequency and link to my cycle. I only got migraines with gluten foods on certain days of the month.

Gluten usually affects the intestinal tract as celiac disease, but for me it went to my head as inflammation, as a headache or migraine, under certain conditions that are female-cycle oriented. I learned that I could cheat the system by drinking a little caffeine prior to eating a small gluten item. I was able to enjoy some cake, etc. now and then. Since I've increased Vitamin D3, my intestinal tract may be more senstive to the gluten, and I'm watching this, as I think I'm noticing some intestinal things. I don't have pain, as Vitamin D3 has eliminated most muscle pain, except where I have something tight/pinched and I'm working on that with stretching.

For some of us with migraines, Vitamin D might lower the inflammation level to only feel like a headache instead of a higher level of pain, making it a migraine? that a deficiency of V D3 can lead to a type of inflammation in my muscles that caused pain when I was on my feet for awhile or exercised? I'm sure it's only a piece of a larger puzzle, but it's about inflammation...also heart disease, diabetes too....inflammation of some type.

Omega3NoTea

7/ 1/09 7:49pm

Dear Erika,

True, everyone is different, and not all medication will work the same for everyone. However, I will not be bothering you much about medication. I'm not a doctor, I'm not an expert and for sure I'm a little hard-headed (thank God sometimes), but you may be interested in my history.

I'm 46 male and I've been 10 years trying to find a solution for my migraine attacks and I've been to doctors and even a neurologist who patiently prescribed my medication. This included a beta blocker and an anti-depressant (25mg) as preventive treatment and not to mention the loads of pain killers I needed during my migraine attacks. Finally my doctor prescribed to me 2.5mg of zolmitryptan (and occasionally 5mg) to cure my migraine. My migraine attacks (without aura) can be severe and usually last around 12 hours and by severe I mean painful headaches on the right side of my head, nausea and vomiting.

Luckily, I was reading an article on the MyMigraineConnection web site by Teri Robert when I came across a suggestion that Omega 3 (fish oil) is good to help maintain a healthy brain cell membrane (the experts are not even sure of this, but I am now). Well when you're in pain, you will try everything and that's what I did but I only took half the dosage as I did not believe it would work then. The first 2 weeks were fine, but then the headaches started again. In view of the fact that Omega 3 is natural and also good for the heart and joints I kept taking the pills. Then later on and as I knew that tannin can also be a cause for migraine I decided to do something else and I stopped drinking tea (my intake is 3 to 4 cups a day and I had stopped drinking coffee ages ago). After this, two weeks passed, one month, two and still no migraine and I thought I found my solution - I was not quite right - 4 months passed and I got two successive severe migraine attacks in 2 weeks. I had stopped taking tea I thought it was tannin I was taking from other food - I was wrong again - Then I suddenly realized that out of carelessness I had stopped taking my omega 3 supplements!

Many months have passed since then and I am certain now that a healthy balanced diet that includes fish, vegetables especially the dark green ones, omega 3 supplements and no tea are a solution at least to my severe migraine pain. Ocassionally I do get slight headaches but I can deal with these even without taking pain killers.

On a more technical level my history above points to a low level of serotonin, the neuro transmitter most active in the brain during the daytime. In fact, Omega3, apart from maintaining healthy brain cells also raises the level of this substance while on the other hand tannin, a substance present in considerable quantity in black tea that binds with starch that generates serotonin therefore reducing its level.

Please note that if you decided on taking the Omega 3 supplement and perhaps balance out your diet this will not work overnight - you will need a week or two to see the effect.

Also, unfortunately, Omega 3 is very much missing in our diets today, especially if one opts to choose unhealthy food known as junk food or fast food (These are normally rich in Omega 6). The meat and fish we eat from the farms are not rich in Omega 3 and the reason being that both cattle and fish are fed with artificial food that lacks in Short Chain Omega 3 - ALA. ALA is converted by their bodies to Long Chain Omega 3 - DHA & EPA fatty acids. (The human body does this but not so efficiently by digesting dark green vegetables such as spinach and also flaxseed oil)

I did a lot of personal research on this subject and can go on and on, but above all I sincerely do hope you will find my comment useful. Even if this doesn't work for you, whatever you do, please do not give up.

May God send you his blessings.

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