Will Your Migraines Get Better or Worse in the Future?

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What Every Migraine Sufferer Should Know to Stop Chronic Migraines Down the Road

“This is my struggle! I just pray everyday and hope someday I’ll be healed!” said Michelle Frazier in response to Tracy H.’s Migraine Journey published on Migraine Again. If only we knew what the future holds. We all want to know when this migraine pain is going to stop — and if it ever will.

Will it get better? Will it get worse? Will my vacation, birthday or wedding day be a migraine disaster? Will I be able to enjoy chocolate or wine or bright sunshine again? Is there any way I can stop chronic migraines in the future? That’s what we want to know. Yet doctors can’t give you a definitive answer, because migraine attacks are generally unpredictable. A new study is finding what increases your risk of progressing from episodic to often disabling chronic migraine – something every migraine sufferer should know.

Common Migraine Life Cycle

According to The Migraine Research Foundation, migraine is most common during the peak productive years, between the ages of 25 and 55. While 1 in 10 school age kids have migraine, The Migraine Trust reports that most people have their first attack during their teens or early twenties. It is rare for migraine to start later in life. Typically, migraine becomes less severe and frequent, and may even disappear, by around the age of 50. For some women this is associated with their menopause, for others it may be retirement or reduced stress.

Our Readers Share: Which Stage of Life Produced the Most Intense Migraine Symptoms

How Migraines Progress Over Time

According to a 12-year retrospective study on how migraines progress over time, 3 of 10 of migraine patients who had been getting 1 to 6 attacks per month reported their attacks had stopped. That’s great news! For a third of us, migraines may be temporary.

The researchers, led by Dr. Carl Dahlof of the Gothenburg Migraine Clinic in Sweden, found that of the remaining patients who continued to experience the headaches 12 years later, most had fewer, briefer, and milder attacks. That’s also good news.

Fewer Attacks for most: 80% reported a change in attack frequency, with 80% of them having fewer migraines and
Depending on your age and how you treat it, migraine can get worse – or much better. (Source: Stewart et al 1994)
20% having more.

Shorter attacks for most: 55% reported a change in duration of attack, with 66% of them saying their attacks lasted shorter periods of time and 34% saying they lasted longer.
Less intense pain for most: 66% said the pain intensity changed, with 83% of them experiencing milder pain and 17% experiencing more severe pain.
Now, the bad news: a small percentage progressed to the more disabling form known as chronic migraine, defined as having migraines more than 15 days a month. The American Migraine Prevalence and Prevention Study (AMPPS) found that 2.5% of the US population suffers from chronic migraine – including many of us. Another study is underway, the Chronic Migraine Epidemiology and Outcome Study (CAMEO), to follow 12,000 chronic migraine sufferers and discover the factors that increase the likelihood of episodic migraines turning chronic.

What You Can Do Now to Stop Chronic Migraines in the Future

According to Dr. Richard B. Lipton, director of the Montefiore Medical Center Headache Center and professor of neurology at the Albert Einstein College of Medicine, in New York City, the CAMEO study revealed “not surprisingly, among people with episodic migraine, the worse you are, the more likely you are to continue to progress. So high frequency and high disability are important predictors of progression.”

Dr. Lipton told Migraine Again that there are several risk factors patients should be aware of that increase likelihood that episodic migraines will turn chronic and disabling. These include:

Comorbid conditions, including depression, anxiety, asthma and rhinitis
Adverse childhood experiences and highly stressful adult life events
Use of opioids (e.g. Fiorinal/Fioricet/Tylenol with Codeine, Dilaudid, OxyContin, Percocet) and barbiturates (e.g. Amytal, Nembutal, Seconal) to treat attacks
Allodynia, the experience of ordinarily non-painful stimuli as painful
Obesity
So what can you do? Patients are often advised to manage risk factors for progression to chronic migraine when possible, such as losing weight, treating depression/anxiety, and avoiding risky medications. And to be patient: many people eventually outgrow them, often in their fifties and sixties. Many women expect that menopause will finally bring relief, but that only happens for about half of migraine sufferers. In fact, surgical menopause actually increases the odds of migraine continuing, says Dr. Susan Hutchinson, Director of the Orange County Migraine & Headache Center, Irvine, CA.

Learning from Each Other

That’s what’s so great about the Migraine Journeys you’ve each shared this past year. Each is different. Each is a poignant real-life, true story of one person’s struggles, lessons and victories with migraine. Each is a sliver of that crystal ball we’re looking for to tell us what our migraine future holds.

It takes strength and a good attitude to tolerate migraine pain every day, every week or every month. Until your pain improves, you can help someone else understand what lies ahead by sharing your Migraine Journey. It’s easy, takes about 7 minutes to answer a few questions, and we don’t use your name to protect your privacy.

Your Migraine Journey could offer a warning, relief idea or comfort to someone else. Can you help someone else stop chronic migraines before they start?

Night Moves

It’s 3:30 a.m. I’m up. I fell asleep for about an hour last night. Couldn’t get comfortable. My back hurts. My neck hurts. My head, as usual, hammering and banging away. Same as last night. And the night before. Painsomnia. That’s what the medical field calls it. I have many other names for it. I won’t share those. I’m so tired. Physically and emotionally. I fall asleep in my chair during the day after taking my meds. It’s fitful and not at all restful. It’s in short periods of time. I jerk awake. Look at the clock. It’s been 15 minutes. Repeat. When the pain is at a 10, I take my highest dose and “pass out.” Again not restful or rejuvenating sleep. I wake up from both scenarios groggy and hungover. I can’t focus well and I’m almost always still in pain. I’m never refreshed. I don’t wake up out of pain. I hurt all the time. This is my routine. I can’t seem to break it. I’ve tried different doses of meds. Tried different combinations. Dr. Pain added sleeping aids. The side effects are too intense. Tried sedatives and anti anxiety meds. Same result. My pain doctor is at a loss. He hasn’t given up and tells me not to either. It’s easy to tell him that I won’t. That I’ll fight. Be patient and hopeful. I tell myself the same. But at 3:30 a.m., it’s hard. I’m in a bad state of mind. I’m exhausted. I hurt all over. I’m stressed. I’m full of negativity and doubt about the future. Is

Don't you cry no more!
Don’t you cry no more!
this my new “normal?!” I hate 3:00 a.m.! “When you just don’t seem to have as much to lose, strange how the night moves.” Bob Seger

The Five People You Meet When You Have Migraine By Kerrie Smyres—March 20, 2015

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Talking to people about migraine can be nerve-wracking. You never know for sure how they’re going to react, but you have a pretty good hunch it’s not going to be helpful or supportive—even when that’s exactly what the person is trying to be. Every once in a while, though, people will surprise you.

Here’s my take on five types of people you meet when you have migraine. Do you have any to add to the list?

1. People who think a painkiller will put you right back to normal. OTC painkillers take care of their headaches in no time and, to them, a migraine attack is just a bad headache. The logic follows that a painkiller is all you need to end your migraine attack. As a concession to the perceived severity of your pain, they might suggest you take four Advil instead of the normal two. If you refuse the painkiller or say you’ve already taken one and it didn’t work, it is usually assumed that you’re using migraine as an excuse to shirk your responsibilities or, worse, are trying to get attention.

2. People who have All The Answers. This person knows someone who has migraine or knows someone who knows someone with migraine. Or maybe they’ve just read an article about someone who has migraine. In any case, they’re sure that whatever worked for that person is going to work for you. If you protest, there’s always another solution. And another.

3. People who think that you just need to try harder and/or have a more positive attitude. These folks are sure that your migraine attacks will cease if you took that medication they heard about or try harder to avoid your triggers or think happy thoughts. They live by the sayings, “hard work always prevails” and “mind over matter.” I presume they get most of their information about migraine from drug advertisements and happy-go-lucky success stories in the news.

4. People who believe you bring your migraine attacks on yourself. Lung cancer is the classic example of this, but migraineurs are subject to plenty of patient-blaming. It usually takes the form of assuming that you’re stressed out and need to relax. If the person has read an article about migraine in Woman’s Day, they might think you’re to blame because you drank a glass of red wine or ate a square of chocolate.

5. People who see how hard you work and believe that you are strong. It can feel like these people are few and far between, but they do exist. They recognize migraine for what it is—a chronic illness characterized by disabling attacks—and see you for who you really are regardless of migraine. These people know you’re not to blame for your attacks and that there may not be a simple fix for you. They admire your strength for enduring and your courage for trying new treatments even after one has failed. They don’t see you as complaining or malingering, they just wish they could do something to help. If you have one (or more!) of these invaluable people in your life, thank them for their support. They make living with migraine so much easier.

Now in her late 30s, Kerrie has had chronic migraine since she was 11. She’s been writing about migraine and headache disorders on her blog, The Daily Headache, since 2005. Kerrie is also the cofounder of TheraSpecs, which makes eyewear for migraine and photophobia relief.

What I Live With from Huffington Post

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For some it starts with a toothache. For others, a blind spot or creeping numbness in fingers and toes.

Warning signs for migraine and cluster headache are as individual as the debilitating range of symptoms that fall under the banner of this little-understood illness.

“I don’t know what happened in my brain but it’s broken, and I just have to live with it,” chronic migraine sufferer Kathryn Crosby said.

One in 10 Australians suffer migraine, putting it is on par with asthma and melanoma — and it affects women three times more than men.

The burden of migraine on the Australian economy has not been quantified but headache specialist Paul Roland predicts it is immense.

“One of the reasons migraine has such an effect on the economy is it’s very prevalent when people are in their prime — often in their 20s and 30s,” Roland said.

“It essentially means these people are temporarily debilitated at unpredictable times. They may be a chief executive and will become completely unable to work for hours or days without any warning.

migraine1

Kathryn Crosby’s migraines are debilitating.

“Or often it’s parents, and they have to explain why they can’t take their child to that sport event or why they can’t go to dinner with their partner.”

Crosby’s migraines have rendered her unable to work.

“It’s taken four years of my life,” she said.

For Bruce Davis, his migraines were such that he could work, but it was not easy.

“I’d have a dull migraine-type headache and that would generally stay with me during the day at work and wouldn’t go away irrespective of what I took, generally until about 3pm… and I would be left with what I called a bruised feeling,” Davis said.

bruce

Bruce Davis has been getting fewer migraines since he stopped working.

Despite celebrities talking about their migraines, including swimmer Ian Thorpe, radio host Kyle Sandilands and global stars like Kanye West and Serena Williams, Roland said migraine is under reported.

“Despite all the campaigns and celebrities, It is vastly under diagnosed, especially in children,” Roland said.

“Generally, some GPs are loathe to diagnose it and for adults, there’s a sense that there’s no need to report it if the treatment isn’t effective.

“I think it’s the case that people with migraine went to a GP about a decade ago and were told to take an aspirin, which didn’t really work, so they’ve never been back.

“Then in terms of children, kids are long suffering — if they feel unwell, often they’ll just go quiet.

“One of my children has migraine and had I not have been a specialist in migraine, she would not have been diagnosed.”

aimie

Aimie Rigas gets fewer migraines since going off the pill.

Symptoms of migraine range from severe headache to body numbness and palsy right through to nausea and vomiting.

One of the more unusual symptoms, however, is aura or visual issues including blind spots and perceived flickering lights, zig-zagging visions and photo sensitivity.

Another symptom, Roland said, was guilt.

“They suffer a lot not from the pain but from guilt,” Roland said.

“It’s often young women who get migraines, and for many, the trigger isn’t stress itself, it’s the relief of stress.

“This means a common time to get a migraine is Saturday morning, or at the start of a holiday.

“It’s a feeling of letting the team down because you can’t enjoy time with you loved ones.”

For Alex Nisbet, who gets chronic cluster headache, the stress of an imminent attack causes tension.

“The anxiety that it creates for a large proportion of people, brings on depression,” Nisbet said.

“When the pain is at a 10, it feels like there is a vice around your head there is a massive headache, and speaking is really difficult.

“You’re in the fetal position, begging for something. It doesn’t kill you, but that’s when you wish it would.”

alex

Alex Nisbet suffers from cluster headaches.

In Australia, meanwhile, research into migraine continues, often through volunteer donations.

On Monday, not-for-profit organisation Brain Foundation announced a new grant into migraine imaging at the University of Sydney, while the Centre for Clinical Studies is currently recruiting volunteers for two separate studies into chronic migraine including one looking at the effectiveness of a breast milk stimulant.

At the University of Sydney, PHD candidate Maria Aguila last month published findings on a type of acid that was present in high levels in migraine sufferers.

“For such a debilitating condition, very little is known about migraine so this is a big step forward and could lead to better diagnosis and treatment of the disease in the future,” Aguila said.

cayla

Cayla Dengate gets debilitating migraines at unpredictable times.

“We still don’t know what causes migraine, how it starts and ends, or why the triggers appear to differ from one person to the next, but this discovery means that we can now be much more specific with our research going forward.”

For Roland, it’s an issue that requires more funding for research.

“I think it shows something’s wrong in society today in that pain is trivialised,” Roland said.

“If you’ve got a great, big growth hanging off your head, people will do something about it but if you’ve got pain and no one can see anything, it’s not taken seriously.

“My advice for anyone who gets migraine is don’t take no for an answer.

“Keep trying until you find something that works.”

Holding Back The Darkness

Having a really tough time right now. Trying to stay positive. The Darkness is creeping in and it’s getting harder to keep it at bay. It’s so strong and I feel so weak. I know help is coming, but it’s 3-6 months down the road. I am desperate and out of options. I need prescriptions, dental work, and Migraine treatment. All need paid up front. I’ve maxed out my credit card and can’t obtain a loan. No one to borrow from or to help. I’m so thankful that I won my appeal hearing, but that doesn’t help my current situation. I’ve got bill collectors calling and monthly payments overdue. I know my story is no more special or worthy of help than anyone else’s. I have stayed strong for so long through the pain and depression. It took 4 years to win my disability benefits. It’s hard to keep fighting when your body is battered and beaten down with daily chronic pain. I struggle every day to get out of bed and “function.” I drive myself to doctor appointments and the pharmacy when I can. If the pain is too much, and I don’t feel safe on the road, then I will cancel. If I go, I have to time my meds with the trip, so the effects don’t interfere with my driving. It’s a lot to coordinate just to see my doctor. It’s ridiculous really! Can this be my life now?! Will this be my life forever?! That’s when the Darkness creeps in. At night, when I can’t sleep. When I’m questioning myself and thinking too loudly. It’s like trying to hold back the tide. Impossible. Exhausting. Defeating.

Don't you cry no more!
Don’t you cry no more!
If you can help in any way, please contact me. If not, prayers are appreciated. Bless y’all for your love and support.

Drilling a Hole in Your Skull for Migraine Relief By Kerrie Smyres—October 24, 2013

Have you ever wanted to drill a hole in your head to reduce your migraine pain? You’re not the first to think of this technique – trepanation, the official term for drilling a hole in one’s head for relief from brain-related diseases, has been used as a migraine treatment throughout history, with evidence of it’s use even found in prehistoric cave paintings. It was thought to be effective by either reliving pressure around the brain or releasing evil spirits. In case you’re considering it, please know there’s absolutely no evidence supporting trepanation as a migraine treatment. During a migraine attack, it may feel like the pressure is too high in your skull or that your brain is pushing against your skull, but neither of those things are genuinely happening. There is no physiological change to the actual pressure within your skull. And, of course, while migraine may seem like evil spirits infesting your brain, that’s not happening either. So, in addition to being phenomenally unsafe, trepanation won’t even do anything to relieve migraine. I conceived of this post as a way to share a bit of history and make a joke about drilling a hole in your head as a way to relieve migraine pain while simultaneously creating a great Halloween costume. Reading about the procedure quickly made me realize that trepanation is nothing to joke about. There are people and even an international organization promoting the use of trepanation for improving brain function and achieving higher consciousness. I’m scared to find out for sure, but I wouldn’t be surprised to find DIY trepanation instructions on the internet. What started out as a joke has me really weirded out. I’m pretty sure you all know trepanation is only a migraineur’s daydream when we’re desperate for relief. I don’t want to insult anyone by assuming you’d actually drill a hole in your head. Still, the desperation for migraine relief is unbelievably powerful (I’ve proven this to myself time and again, most recently by malnourishing myself for months). In those moments when it seems like every other treatment has failed and a person is nearly delirious with pain, I could see trepanation appearing to be an almost reasonable option. Just to be clear, it’s not. Trepanation: Don’t try this at home! Profile photo of Kerrie Smyres Now in her late 30s, Kerrie has had chronic migraine since she was 11. She’s been writing about migraine and headache disorders on her blog, The Daily Headache, since 2005. Kerrie is also the cofounder of TheraSpecs, which makes eyewear for migraine and photophobia relief.

Migraine symptoms: Transient Aphasia By Ellen Schnakenberg—January 24, 2012

Itwpid-wp-1432820181903.jpeg can be a frightening and disconcerting experience to speak to someone and realize that what is coming out of our mouths sounds a bit like a golden retriever.

This is one of the many symptoms of Migraine with Aura that sidelined my personal life. It was also breaking news when Serene Branson suffered transient aphasia in the middle of her live news report.
Aphasia is an acquired condition in which the patient loses the ability to do one or more of the following: speak or understand speech, read or write, perform or understand mathematical tasks.

Aphasia can occur suddenly or over a period of time. In the Migraineur, it is usually a symptom of aura and comes on suddenly. It feels a bit like this – One moment you are speaking and understanding a conversation, and the next moment *POOF*you’re in another country, confused and completely out of your element and out of control.

Thankfully unless the Migraine patient suffers a condition called persistent aura, or permanent damage occurs due to a Migrainous stroke, aphasia is temporary. It comes and it goes. Physicians call this Transient Aphasia, because it is not a permanent deficit. It does not require therapy to overcome.

What happens during an attack of aphasia?

It is now understood that Migraine aura is the result of an electrical wave that pulses across the brain called Spreading Cortical Depression. As the unusual electrical wave spreads across the brain, our neurons fire in an abnormal way and our brains can become confused. We see things that aren’t there. We may feel, hear or smell things that aren’t there too. Even our sense of time and space may be altered. As the spreading cortical depression hits the parts of our brains responsible for these and other functions (such as language) we experience strange aura symptoms.

There are two different parts of the brain responsible for language. They are called Broca’s area and Wernicke’s area. Each area controls different parts of language — 1. Function, and 2. Understanding.

Broca’s area is responsible for function — speaking, reading and writing words and numbers. (Words and numbers are all part of language) Aphasia in this area of the brain is often called non-fluent aphasia or expressive aphasia, because the individual has lost the ability to speak words or sentences, although the ability to understand language has not been affected. The patient will struggle to find the right word or number, and not be successful. The reason these patients have aphasia has nothing to do with loss of motor skills in forming words — it is a neurological phenomenon.

Wernicke’s area is responsible for understanding words and numbers. Aphasia in this area of the brain is often called fluent aphasia or sensory aphasia, because although the patient can speak using mostly normal words, they are often nonsensical – as if the words’ meanings had been re-arranged. The person speaking has no idea they aren’t using language correctly and will often be shocked when later presented with a recording of their conversation. They also cannot understand what anyone else is saying to them.

There are many different ways to classify aphasia, but those classifications are usually restricted to permanent deficits. When the aphasia is caused by Migraine, it is usually and simply called transient aphasia. A patient suffering aphasia is called Aphasic.

Migraine patients often may not simply suffer aphasic symptoms from one or the other area, but mixed types. Additionally, one aphasic experience may not be as severe as the next — or vice versa. Just as each aura is different, each experience with aphasia may be different too. Knowing how our brains work normally and during a Migraine is often helpful however, in relieving stress from the unknown.

Knowledge truly is power! I sometimes have aphasia — what can I do?

Carry a wallet card explaining your condition: These cards can be purchased from various aphasia websites, or you can simply create one yourself that says something like: “Hello, my name is ______ and I sometimes suffer transient aphasia as part of Migraine aura or side effect of a medication I am taking. This means I may not be able to understand or speak to you right now. To help me, please call ________.” Don’t forget to warn the person (or doctor) whose phone number you’re using that they may receive a call. Help them by providing them with instructions you would like them to give the caller such as: How to contact someone for transportation home. Where your medical information is located. Where you store your medications so a helper can get them to you. How to contact your spouse or physician.
Carry an instruction sheet that includes the information above, as well as contact information for significant others who can help you.
Carry a small pad and pencil with you.
Carry a smart phone with GPS tracking enabled. An example of one program that allows “friends” to see where you are is: Google Latitude
Consider creating a one button text code to a loved one that indicates your situation when you’re alone.
Remember to create an auto dial number for ICE on your phone (In Case of Emergency) and direct it toward someone close to you who is usually available. Emergency personnel depend on these numbers and will look for them. Multiple ICE numbers can be followed by #1, #2, etc. May also code APHASIA with an emergency number in your phone too. This will help emergency personnel or helpers to assist you.
Remember — no matter how confused and alone you feel, You. Are. Not. Alone.

What can my loved ones do to help me?

Keep paper and writing tools handy “just in case”.
Use gestures if necessary.
Speak slowly and carefully and give plenty of time for single word responses.
Use drawings or pictures to be understood
Educate yourself about Migraine and aphasia so you can advocate for your loved one when they have lost their own voice.
Plan ahead and practice — what will you do if you receive a call from someone trying to help your loved one?
Be ready with hugs of encouragement. Don’t lose patience. Give plenty of time for your loved one to try to communicate with you.
Be sure to summarize a thought or idea you think they have and give them the opportunity to nod or shake their head to indicate their agreement or disagreement.
Remember this is a temporary situation beyond their control. They are alone and scared.
After the attack is over, review together what happened and make any changes to your plan necessary for the next time.
Aphasia and Migraine medications

Aphasia is sometimes a part of Migraine aura (often mistakenly called Complex Migraine — an antiquated term) but it can also be a side effect of preventive medication you may be taking for your attacks. Be sure you cross check all your prescriptions for this potential, no matter how rare they may list it. Gabapentin and pregabalin are two examples of medications that list aphasia as a potential side effect. Do you know of any others?

If you have recently (last 6 months) changed your preventive and suddenly are experiencing transient aphasia, consider talking with your doctor about it. Any changes in your normal Migraine pattern needs to be discussed anyway. Your aphasia may be a symptom from your medication and changing meds may be warranted to see if the symptom disappears on its own. Your own aphasia may be short and not affect your life much at all. Then again, it may be serious and even necessitate major life changes like it did with me. Either way, it is a severe symptom that you will want to be sure and minimize. This means education and becoming proactive.

Limbo Land

wpid-wp-1422496248237.jpegSo, I had my appeal hearing on the 15th. The Judge told me he would send my notification letter out to me as soon as possible. I was so happy I had won, it never occurred to me that I may have to wait an undetermined amount of time for proof. I can’t apply for Medicaid without it. My bills are still rolling in. My service cat needs a vet visit. I have a tooth that needs a crown. I have two payments left on the root canal therapy I had done due to extreme pain and infection. My medical insurance went up to over $500.00/month. I have monthly payments due to allergist, pain management, psychologist, past due medical bills, prescriptions, etc. The money is gone. I have no options for income of any type. I have no one to borrow from or get a loan. I don’t know why I thought my troubles would be over the second that I won my appeal. I’m in limbo. Not a good place for me with my depression and anxiety issues. I am already too into my own head. Too much time to think and worry and stress about anything and everything. I need an end date. I need to be able to plan. I need peace of mind. In the meantime, my medical issues are not under control. I have treatment options that I cant afford. I can’t help but think that I would feel better emotionally if I felt better physically. Oh well. I guess it’ll be awhile until it’s all lollipops and candycanes.

I Am Not Alone – Another Blogger’s Struggle

I feel like this woman is living my life and vice versa! Please follow her blog for heartfelt insight into living life with chronic pain. P.S. Migrainista, please stay strong and #AlwaysKeepFighting! Much love! Lollipops & CandyCanes

Migrainista
I am a married woman in my 30s who is living with chronic migraine pain and Fibromyalgia. Join me as I try to figure out how to live my best life despite the pain, fatigue and such.
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A Little Slice of a Chronic Pain Life

TUESDAY, OCTOBER 20, 2015
A Little Slice of a Chronic Pain Life
I had plans for today. Reasonable plans that included getting 2 quick errands done, cleaning the bathroom and doing one load of laundry. I planned to have plenty of rest between these activities and to go ahead and give myself the entire day to get them done.

But I woke up with a migraine. I was pretty sure I would because I had one last night when I went to sleep. I took my rescue med before even getting out of bed and added in some Ibuprofen once I had a little food in my stomach. After a quick nap the pain was more manageable so I went ahead and took a shower.

Now I’m sitting on the couch feeling mentally and physically exhausted; feeling hung over and achy throughout my body. I can still feel the migraine pain under the medication, which means as the meds wear off later this afternoon the pain will get worse, which means I’ll go to bed with a migraine and wake up with the same migraine – just like today.

I will probably take at least 2 naps today. One as soon as I’m done here and then again after I walk Gypsy around mid-day. I’ll work hard to pull myself together to heat up leftovers in the microwave for dinner tonight but it’s possible hubby will have to heat up his own and I’ll end up with a Clif Bar thanks to my nausea. Thank God for leftovers.

It’s safe to say my reasonable plans for today and tomorrow have to be abandoned. I’m already reworking the plan in my head. I can push off that trip to Target – maybe stop on my my home from the doctor’s office on Thursday. Who knows, I may even feel a little better by then. I can probably squeeze in that load of laundry as a way to get myself moving. It’s important to move periodically. The bathroom can wait. Gyspy needs a nail trim so I hope tomorrow isn’t quite as bad as today so I can take her to the groomer. But her nails might need to wait until next week because I have doctor appointments on Thursday and Friday. Honestly I wish I could just sleep until my appointment on Thursday – but that’s not how life works, is it?

Ah, life with chronic pain. Full of uncertainty, altered plans, lost time, pain and a whole list of other symptoms and consequences. Ufda!
Posted by Migrainista at 10:17 AM

Bittersweet Victory

So, after almost four years of doctor visits, tests, medications, treatments, reports, blood work, pain, stress, panic, anxiety, chronic daily migraines, fibromyalgia, insomnia, depression, and countless forms and paperwork, I was approved by SSDI for Disability benefits. I had been denied twice before. And probably would have been a third time if not for my attorney and law firm. I did so much research about the SSI and SSDI programs, I have numbers and percentages stuck in my head. 900,000. That’s the backlog of cases yet to be heard by a judge. There are so few offices and judges and so, so many people in need. I consider myself extremely lucky to be done with the process and to have received a favorable outcome. My stress and anxiety level has dropped tremendously. My pain level remains the same, but hopefully now I will be able to afford some of the treatments that I couldn’t earlier. I am still crying relieved, happy tears and have been since the bench decision was reached on the 15th at my hearing. It’s been such a long, energy-zapping, faith-testing, soul-searching, emotional roller coaster ride. I’m saddened that I had to fight to prove that I’m as sick as I say I am. Especially to people who don’t know me or see my endless struggle to get through every minute of every hour of every day. I was a case number to them. Quickly forgotten as my case was dismissed and the next began. The judge in my case was respectful, empathetic, and compassionate. He has my undying gratitude and thanks for treating me as a person and an individual. Well, I’m officially “disabled” now. I am not going to think of this as a sad designation, but as a means to an end. I see myself as a capable, strong, brave fighter. I have had to be to live through this and to continue to do so. I refuse to think of my condition as a permanent disability. I have to believe that there is proper treatment out there for me. Something to give me my life back. To allow me to live, instead of just survive. I want to thank everyone who has supported me since the beginning of this nightmare and those I’ve met along the way. My mother is number one on my list. My hero, my inspiration, my heart. You’ve never stopped loving and caring about me and I felt your prayers and positive thoughts each day. You’ve kept me strong and pushed me to #AlwaysKeepFighting. I love you with all of my heart! To those chronic pain warriors out there still fighting for Benefits that you so rightly deserve, I stand with you! You have my admiration, empathy, and love! You are not alone!

Hope
Hope