Pam, who referred to herself as a “Connecticut Yankee currently living in Israel” is another guest who lives with migraine pain. As with most migraineurs, her story is eerily familiar, yet different too.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

30 years ago, I was 20, home during the summer having finished junior college before going to university. I woke up late afternoon from a nap with what felt like a railroad spike through my left temple and left eye. I found my way to the door and was calling for my mother (instinct is strong isn’t it?) who was outside hanging up clothes. I woke up my dad in the next room who had also been taking a nap.

I knew it was a migraine. I was well-read and my maternal grandmother had them, so my mom told me.

Did you seek help right away? If so, what type of help and, if not, why not?

Took aspirin or acetaminophen, I can’t remember which, had an ice pack on my left temple and lay in the bed with the curtains drawn and the lights off. The pain passed in 2-3 hours. We went to the doctor on the following Monday, office hours ended by 1 pm on Saturdays.

What did the doctors tell you when you did seek help?

I told our family doctor what I had and he agreed. No food trigger or stress was responsible for the initial hit. We often had thunderstorms during the summer in Connecticut so if one was coming, the drop in barometric pressure could have caused it.

Over 30 years I may have had 3 auras–the flashes of light that 1 in 5 migraine sufferers get but it’s a phenomenon that is interesting and makes the news over the mass that don’t get them.

Pretty much the response in the last 3 decades has been: ‘Try this — fill in the blank.’ Pharmaceutical companies push their drugs as cure-alls but only 1 out of 5 people get any relief though all 5 pay for a drug that is useless to 80% of them. Doctors are poor at pain management and prefer to think that anti-depressants will stop pain which actually makes it worse since I’m taking the stuff, I still have the headaches and I’m more depressed! When I told doctors about a drug they proposed, ‘I tried that already’ the doctors’ response was, ‘let’s try it again’. Oh yes, and they accuse long term sufferers as being pill junkies and addicts. That was always helpful, NOT!

What have you tried to help you with your pain?

Drugs, diet changes, meditation, acupuncture. I had an MRI and CT scans so the good news–nothing there, the bad news–nothing there to fix…

Can you tell me a bit about what worked and what didn’t?Beta-blockers and calcium channel blockers did nothing, blood pressure regulators and steroids were useless.

Drug wise I took: Cafergot, Inderal, Elavil, Fiorinal, naproxen sodium, Depakote, Sansert, Pheyntoin, Lithium, Amitriptyline, Prozac, Butabital, Alprazolam, Midrin, Axocet, Chromagen, Percocet, Atenolol, Ultram, Deltazone, Prednisone, Neurontin, Acetazolamid, Verapamil, Trazedon, Stunarone, Tegratol, Topamax, and Imitrex. Compazine for the nausea did its job. Tylenol with Codeine #4 is the only thing that reduced the pain level by 25% or so.

Topamax actually caused auras and dizzy spells. It also changed the taste of artificial sweeteners to a sour taste so I was off my diet sodas.

I had been a guinea pig at a headache clinic in Stamford to try the injection of Imitrex when it first came out. It did nothing. Neither did the Imitrex inhaler or the pills.

Reiki helps when I can’t sleep for the pain.

How does having this pain make affect you in terms of how you live your life?

In my later 30s, I had gone back to college to take courses to become an RN, changing my career from a graphic artist. Due to either the headaches or the side effects of the drugs, I had trouble focusing and I missed classes. I had graduated Summa Cum Laude at 21, now my memory was bad, my handwriting changed–not that it was good but even I couldn’t read my notes and I had to stop my dream. Eventually I had to quit work and returned home because I couldn’t afford to live in my own place any more. I went on disability and live my life around the pain.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I’ve tried many things and read up on even more. I do believe it’s a good idea to rule out physical problems by getting an MRI and a CT scan. My food trigger is dried beans/peas. They have a natural mold on them, like the silvery mold on plums or grapes. Dried peas and beans in soups etc will cause a massive headache for me in 20 minutes or less. Low barometric pressure is also a cause: I can feel the storm coming in my head. Menstrual changes and hormone levels just before my menses will give me a migraine. Cleaning chemicals can be a trigger so can fluorescent lights that are felt by the brain though the eye doesn’t see the cycling energy. Caffeine sometimes helps, chocolate is not a trigger for me. My triggers are: moods, foods, stress and PMS. Meditation, subsisting on brown rice, moving to the desert and getting a sex change is not realistic, though it is possible. I’m hopeful that with menopause I’ll lose a quarter of my triggers.

I still won’t get a Botox injection. It’s poison derived and I’m just not comfortable with that. Granted most medicines can be toxic in the wrong dose and in lethal combinations, but I’m not going to take a risk with botulism in my head.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Migraines are different in each person, the headaches have different triggers, sometimes multiple triggers. Control what you can in the way of foods, cleansers, lighting for work and home, with whom you associate, and how you react to stress. Finding what works can take decades, the triggers will change too. Be informed, many drugs to prevent headaches can also cause them.

Would you like to add anything?

Since leaving the workforce, I’ve discovered my writing voice. I can channel my pain and aggression into characters, I can make worlds, and I can cope.

Thanks for sharing your story Pam. It’s hard when we have tried so many things to manage the pain – all we’re asking for is *1* thing to work!

If you have a story about living with pain and would like to share it in a future Company’s calling – please let me know. Anyone is welcome – even if you think your story isn’t interesting, it most likely is!

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Image: iStock.com

Post from: Blisstree

Company’s calling – another migraineur speaks out

This week, Diana Lee, a disabled attorney & writer and editor of Somebody Heal Me, from Lawrence, Kansas, joins us to talk about her life with migraines.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

I had my first migraine at around age 6. Migraines run on both sides of my family and are unfortunately quite common among our clan. I had migraine with aura most of the time as a child, and my migraines were most often brought on by sun and heat exposure and excitement surrounding new events and activities.

Did you seek help right away? If so, what type of help and, if not, why not? What did the doctors tell you when you did seek help?

My parents took me to doctors right away because they were petrified the migraines might be a sign I had a more serious medical problem such as a brain tumor. They didn’t realize before that time that someone so young could even get migraines. All the testing checked out okay, so I basically just learned to live with them. I didn’t receive any medication to help me until probably around 6th grade.

What have you tried to help you with your pain?

How much space do I have? Seriously, I’ve tried just about everything under the sun. Since my migraines became chronic (3-4 a week) about four years ago, I’ve tried many medications, therapies and alternative treatments. I’ve been on Inderal, Depakote, Topamax, Neurontin, Nortriptyline, Zonegran, Cymbalta and Lamictal (to name a few) for prevention. Right now I’m trying out Namenda, a drug approved for patients with Alzheimer’s Disease. I’ve tried physical therapy, cervical epidural injections, chiropractic care, massage, biofeedback, acupuncture, energy therapy

Can you tell me a bit about what worked and what didn’t?

I’ve had luck finding treatment medications that help me (Imitrex StatDose, Zanaflex, Zomig Nasal Spray and Migranal Nasal Spray), but so far none of the preventative medications or therapies have helped me. I find meditation and relaxation breathing helpful in coping with my pain.

How does having this pain make affect you in terms of how you live your life?

It affects every single aspect of my life. Every single thing that is important to me. Every single goal I’ve ever had for myself and my marriage. It is really hard.

I lost a successful career that I loved as a government attorney because of my chronic migraines. I’ve recently been approved for Social Security Disability. Although I’m thankful to have been approved for benefits, it is hard to come to terms with the notion that I am simply too sick to engage in the work I love. I worked so hard to become an attorney and I hate being forced to sit on the sidelines and waste my talents and knowledge.

My marriage is intensely affected by my pain. My husband is wonderfully supportive. I couldn’t ask for a better partner, but it is hard for us financially since I had to stop working, and the impact on our emotional connection has been difficult for both of us. Our sex life is often non-existent and our quality time together is severely limited.

My family and close friends are also extremely supportive, but coping with my situation takes a toll on all of us. And I’ve lost friends because they didn’t understand my limitations. Obviously they weren’t true friends if they were that lacking in compassion and understanding, but it is still quite hurtful.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I wouldn’t change a thing. It is often frustrating to have tried almost everything under the sun to no avail, but ruling out each option one by one lets me know that I’m doing everything I can to help myself. I can’t know what will or will not work until I try. Trying so many options also allow me to share my experiences with others to help them make educated decisions about which options might be most helpful.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Please do yourself a favor and find a headache specialist. Don’t make the mistake of thinking that any neurologist can treat your condition and meet your needs. This simply isn’t true. You’ll save yourself a lot of time and heartache if you seek out someone who compassionately and knowledgeably treats headache patients from the outset. Ask for recommendations from people in your area or visit Teri Robert’s list of patient recommended specialists on MyMigraineConnection.com.

Thanks for joining us Diana – as someone who has migraines a couple of times a month, I can’t even begin to imagine what yours must be like.

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If you have a story you would like to share in a Company’s calling interview, I’d love to hear from you. Whether your battle is living with pain now or how you overcame chronic pain, it’s all interesting to me. The issue can be how you help or helped someone else with chronic pain, as well. This is how Diana’s story came to me; she emailed and told me about her story. If you would like to participate, just drop me a line at marijke@medhealthwriter.com. Thanks!

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Image: iStock.com

Post from: Blisstree

Company’s calling – migraines can cause disability

This week, Jeannette Davis from Fairbanks, Alaska, talks to us about her migraines.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

Headaches, and I’ve had them all my life as long as I can remember.

Did you seek help right away?

No, I didn’t seek any help with the pain for a number of years. I thought it was normal because my Mom always had headaches, too.

What did the doctors tell you when you did seek help?

I was 27 when I finally talked to my doctor about it. I knew by then that I had migraines. He took me seriously, discussed different migraine triggers, and initially prescribed pain killers and Imitrex.

What have you tried to help you with your pain?

Avoiding aged foods, wearing sunglasses, monitoring caffeine intake, avoiding florescent lighting, especially if I’m working on a computer, strict sleep schedule, migraine specific medications like Imitrex, meds developed for other illnesses like Topamax, general pain killers (barbiturates), OTC [over-the-counter] pain killers

Can you tell me a bit about what worked and what didn’t?

Works: Avoiding aged food, wearing sunglasses, avoiding florescent lighting, strict sleep schedule, taking Topamax, barbiturates, some OTC pain killers

Doesn’t Work: monitoring caffeine intake, some OTC pain killers

Makes Worse: Imitrex and similar migraine specific meds

How does having this pain affect you in terms of how you live your life?

I’ve missed work, functions and events because I haven’t been able to attend due to the pain. Before I was on medication, I was having headaches five out of seven days and migraines five to seven times a month. It was exhausting. I was always living with a headache.

When I was younger, I always knew that certain foods would give me a headache – hot dogs, the butter on movie theater popcorn, cheese, bacon, pizza. My friends would think I was weird because I’d make comments like, “Oh, I can’t eat that. I’ll get a headache.” But I thought they were weird because they couldn’t “taste” the headache in those foods. Strange, huh?

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I don’t know that I would change anything. The preventative medication that I’m currently taking wasn’t widely used when I first went to the doctor for the problem. I started on the preventative about two years into treatment. If I had gone to the doctor any sooner, I would’ve just had stronger doses of the barbiturate, and had to try more of the Imitrex type remedies.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Talk to you doctor, and go online and do some research. There is a ton of information out there for migraines and pain management. And don’t be afraid to take medication! If your pain can be controlled, or even reduced, it can make such a difference in your life.

Would you like to add anything?

It wasn’t until I was in my 20s that I realized that this kind of pain wasn’t normal. I honestly thought everyone got headaches regularly, since my Mom did. It wasn’t until I talked with one of my brothers and my sister (both much older than me), that I realized it wasn’t a normal thing. They both get severe migraines. My brother has had to be hospitalized on more than one occasion because of them. My sister’s daughter suffers from them, too. I know that some studies have shown that there can be a genetic link.

Taking Topamax has been wonderful. I don’t have the daily headaches anymore, and the occurrence of migraines is reduced to about three a month, depending on stress, travel, food, and other triggers. Topamax is an interesting drug, too. It’s another one of those meds that was originally developed for one thing (seizures), but has found multiple uses, such as migraine prevention, and they use it in drug and alcohol rehab to help with cravings and withdrawal. There’s speculation that migraines and some seizures may be triggered in the same part of the brain.

Thank you Jeannette for sharing your story. I, too, found that Imitrex made my migraines worse. It’s interesting to hear that from someone else too.

Post from: Blisstree

Company’s calling – living with migraine pain