chronic illness

The Best Way To Explain Chronic Migraines

Today’s guest post is written by Dr. Mark Khorsandi who works with the Migraine Relief Center which has several offices across the nation that offer a variety of treatment options including surgery, injections, and alternative options. Be sure to check out his site for more information

Along with the pain and emotional side effects of chronic migraines, the last thing a person wants during an attack is to hear someone say, “I understand. I get headaches every now and then too.” Although this is said out of empathy and no harm is meant by it, you and all other migraine sufferers know that a migraine is not a typical headache.

Adding to the frustration, is the fact that migraines cannot be seen from the outside. Because of this, not only is the pain intensity and the accompanying symptoms difficult for others to understand, but it can also be quite challenging to convince them that you are even suffering from a migraine in the first place.

So how do you help others to understand? As with most education, it is best to start with the basics.

What Is A Migraine?

The first question a curious loved one may ask is, “How do you know it’s not just a headache?”

Although migraines do fall under the same category as headaches, their characteristics are much different. First of all, unlike most headaches which are normally felt on both sides of the head, migraines typically focus on one side only. They also cause severe, intense throbbing or pulsing pain which can last from hours to weeks.

To make the situation worse, migraines are usually accompanied by a wide range of unpleasant symptoms such as blurred vision, vomiting, nausea and sensitivity to lights, smells and sounds. They can also cause stress, irritability and depression.

What Causes Chronic Migraines?

Another question you may hear is, “Why do you get them so often?”

Chronic migraines are often associated with genetics, such as skeletal imbalance problems, issues within the jaw joint or environmental factors. Unfortunately, until the root cause is discovered and corrected the migraines will likely continue.

  • Genetic Factors: Any type of misalignment above the shoulders, including the skull, jaw or neck can cause unusual activity in the trigeminal and facial nerves. When these nerves are irritated, the surrounding muscles experience unusual and chronic contraction. This leads to abnormal blood flow in the brain and ultimately to migraines.
  • Environmental Factors: Although genetics are likely the main cause for most sufferers, migraines can also be triggered by several environmental factors. A few of the main culprits are stress, dehydration, poor sleep, diet, lights, smells and hormones, such as menstrual cycles and menopause.

helping-explain-chronic-migraines

Types of Migraines

Occasionally you may hear statements such as, “My friend has migraines too, but she never complains about nausea.” 

That very well could be true, but this is the perfect time to let them know that there are actually five different types of chronic migraines. Furthermore, each of those types comes with its own unique pain sensations and symptoms.

Basilar Migraine

This is one of the few migraines that can be felt on both sides of your head, as well as on the back. Along with the severe stabbing or throbbing pain, many sufferers also experience visual disturbances, confusion, balance loss and an inability to speak.

Ocular/Retinal Migraine

With this type of migraine, often the first symptom is partial or full loss of vision in one eye, which can last up to an hour and occur as early as 18 hours before the migraine strikes. The rhythmic throbbing or pulsing pain is usually accompanied with sensitivity to light.

Hemiplegic Migraine

Frightening stroke-like symptoms often precede the severe throbbing pain of a hemiplegic migraine. These symptoms can include loss of consciousness, nausea, confusion, dizziness, numbness and slurred speech.

Transformed Migraine

The transformed migraine, although typically less intense than the others, can occur daily. The steady ache, throbbing or tension sensation felt from this migraine is often accompanied by symptoms such as light and sound sensitivity and nausea.

Silent Migraine

Since this type of migraine strikes without pain, it can be more difficult than the others to self-diagnose. However, the symptoms are the same and can be just as debilitating. With a silent migraine, you will likely experience visual disturbances, sensitivity to sound and light, confusion and nausea.

 

Migraine Treatments

The final question is one that almost every migraine sufferer has probably heard. “Why won’t you just take an aspirin?”

Unlike normal headaches, migraines do not always respond to standard over the counter medications. Instead, many migraine sufferers must take prescription drugs to relieve their symptoms. Others look for relief in home remedies, massage, Botox and for the most severe cases, surgery.

Friends and loved ones ask questions out of both curiosity and concern, but finding the right way to answer them is sometimes difficult, especially during a migraine attack. Fortunately, now you will be more equipped to explain to others exactly what you are experiencing. Better yet, you can lay your head down, put an eye mask on and say, “Here. Read this.”

Stock photos by Turquoise & Palm
chronic illness

4 Things You Need In Your Advocacy Toolbox

When you get diagnosed with a chronic illness, the first thing you need to do is learn how to become your own best advocate. Actually, first, you need to allow yourself to take it all in. Get upset. Or angry. Cry. Throw something. Eat a banana split (or two).  Then, when you are ready, pull yourself together and decide that you need to be your own best advocate.

These are the things you need in your advocacy toolbox:

1. Research.

I’m not taking about straight up Dr. Google or even Dr. WebMD because they will have you convinced that you are dying of rare condition that will have you bleeding out of your eyeballs any second. Don’t get me wrong, the internet is a great place for research but be sure to check your sources. Read books. Keep up to date on the latest research. You can set up Google alerts to be notified if posts or articles containing your chosen keywords (such as endometriosis research or gastroparesis treatments) are published. Blow your doctors away. By arming yourself with this knowledge, you are able to take a more active role in deciding your treatment plan because you know what the options are. I had to learn the hard way. One of the biggest regrets of my life was choosing to take Lupron. I hadn’t been diagnosed with endometriosis long and hadn’t learned better yet and by taking that medication, my body has been damaged for life. Damage I could have avoided had I researched my options beforehand.

2. Build a dream team of doctors.

When I started getting sick and my PCP told me that she suspected I had a “female problem,” I got extremely lucky that a new ob/gyn had just moved to town and she was assigned my case. The average length of time it takes a woman to be diagnosed with endometriosis is 7 years. From the time that my pain became debilitating to the time she had my diagnosed was 3 months. I saw my PCP in July, had my first appointment with her in August which started all the testing, and I had surgery to confirm endometriosis in September. I got lucky. I got lucky not only because I was able to be diagnosed quick but I got lucky because she was an absolutely amazing doctor. I’ve been with her now almost 13 years and everyone else nows how amazing she is and you wait an eternity for an appointment. But she’s worth it.

I wasn’t always this lucky. I’ve had to make a few chances to the line up to create my dream time. The first rheumatologist I saw didn’t believe in fibromyalgia but diagnosed me anyways then drugged me to the point I could hardly remember my own name. The first neurologist I saw seemed to sleep through most of my appointments as he always asked questions on his way out that we had spend the previous 20 minutes discussing. The first gastroenterologist kept telling me to eat more yogurt even though I was suffering with undiagnosed Celiac disease.

If you don’t feel like you’re being heard or treatment progress isn’t being made, there is no shame in asking for another opinion. Heck, demand it. The two most important things for me personally that I want in a doctor on my dream team is 1) I feel that am truly heard and 2) I am an active participant in deciding my treatment plan. Bedside manner is important but not the most important like I thought in the beginning. Dr H (my endo dr) is the warmest, most compassionate doctor on the planet and she has held my hand and cried tears of pain with me over loss and surgeries and cried tears of joy with me over our adoption news. Dr P (my rheumatologist) is a gentle soul. Not overly personal but makes me feel like a person, not just a patient or file and readily makes me an active participant in deciding treatment. Dr B (my pain specialist) has the personality of a wet mop and honestly if he smiles in an appointment I have to wonder if he got lucky that morning but never once has he made me feel crazy or like a drug seeker. He has always validated my pain. I’ve got other doctors but this just shows that there isn’t a cookie cutter mold of what your dream team needs to look like. We would all love to have a McDreamy or McSteamy on our bench but what is important is that you feel like they are on your bench – your team – and take your case seriously.

Chronic Ilness Advocacy

3. Don’t be afraid to speak up.

If you are in the emergency room and you don’t feel as though you are being heard, speak up. Ask to see someone else if you have to. Last year I went to the ER with an early small bowel obstruction. One of the hospitalists came at me with an NG tube. I explained my previous experience with the tube and that anatomically something prevented them from being able to insert the tube properly. The tube would just curl up in my sinus cavity versus descending downward. I was talking but I knew she wasn’t hearing me. She kept saying, “I’ll give you something to calm you down but we’re not skipping the NG tube because you are scared.” Finally, I just said stop and asked to see another doctor. When the other hospitalist came in, I explained the situation and she said no NG tube. Because there had been difficultly before, she wasn’t going to go in blindly and risk perforating something. If 24 hours of NPO didn’t clear the obstruction and an NG tube was necessary, she would consult a surgeon. The first hospitalist huffed out of the room NG tube in hand. The second just smiled at me and patted me on the arm as she walked out.

If you are in an appointment and have questions but the doctor seems rushed, speak up. Make them take time for your questions. It is their job. If they are pushing a certain treatment but you have concerns or reservations, speak up. If you are having a procedure done and are curious about what kind of equipment is used, speak up. If you had an amazing nurse during your hospital stay, speak up. Speak up about the good things and the bad things.

4. Have someone on board who can advocate on your behalf when you cannot advocate for yourself.

As important as it is for you to be a part of your treatment plans and on top of your research game with your illnesses, it is important that you have someone on your team that can call the shots on your behalf. They don’t need to be an expert in the field but they need to know about all your illnesses, your past history, and the medications you are taking. It would also be beneficial if they could go to an appointment or two so they can meet your doctors and get a better understanding of everything that is going on and get some of their questions answered. Also, it is also often very helpful for doctors to get an update on how a patient is doing from someone other than the patient. Sometimes we like to sugarcoat things or leave them out. Not that I would ever do that. Ever. It seems like an easy decision is you are married, have a SO, or are single and have a family member nearby that can help take on this role but if that is not the case, it may seem awkward to ask a friend to take on this type of role (I’m not talking life or death, power of attorney type stuff here) but it is extremely important.

My husband is an amazing advocate and so many times he has stood up and fought for my care when I could not fight on my own. I try to keep an updated list of medications in my phone but when the emergency happened in February, he just grabbed the bucket of medications from the bathroom shelf just trying to try to make sure the doctors had everything they needed. Unfortunately, this bucket contained not only my prescribed medications but basically medications for the whole family which confused the staff even more. This taught me a huge lesson on how I can do a better job of preparing my advocate to be able to do a better job of advocating in my place. These days our cell phones are like a second limb so try to keep an updated medication list, any allergies, a list of doctors you see regularly and their numbers, and a brief medical history (just the high points that emergency personnel may need such as surgeries, etc) and show your BAFF (best advocacy friend forever) where it is located in case of emergency.

 

There are my 4 items essential for any toolkit to be able to advocate for the best possible healthcare for yourself or for your loved one.

What you would add to the list?

 

Stock Images by Turquoise & Palm
chronic illness

Stalemate: When Life With Chronic Illness Gets Put On Hold

Stalemate: When Life With Chronic Illness Gets Put On Hold

There comes a point in your life with chronic illness where you feel like you are going no where. There are opinions. LOTS of opinions but no where to go. No way to move forward. I’m not a huge chess player but I can’t help but think of this point in my life as a stalemate.

Definion of Stalemate (per Merriam Webster):

: a contest, dispute, competition, etc., in which neither side can gain an advantage or win

: a situation in chess in which a player cannot successfully move any of the pieces and neither player can win

This is honestly where I feel like I am in my life. I have a team of doctors (neurologist, rheumatologist, gynecologist, gastroenterologist, pain management specialist, and general surgeon) and at this point it feels like they are all just pointing fingers at who should be in charge of what. Honestly, it feels like they are just pointing fingers at whose fault it is. The one thing they all agree on is that I am in need of surgery but I am considered too high risk to go in preemptively so they just want to wait until something goes wrong (another total bowel obstruction is the most likely).

There is nothing worse than waiting.

I am currently waiting for our Disney vacation (123 days to go!) which is gut wrenching because I love Disney so much but at least I know at the end of 123 days, I will be on a plane headed south to visit The Mouse and have a week full of fun and family.

When you are waiting for something to go wrong, there is nothing exciting about that. My first total bowel obstruction experience was scary enough without knowing that it was coming and of course, the life changing experience I had in February, I never want to go through again. So right now, I have no idea what to expect.

We are at a stalemate. I feel like there is no win in this situation.

We have known for sometime that adhesions have been affecting my bowel but recently, I have been having a lot of issues with my bladder. The pain can take my breath away. I did see my PCP and I do not have a bladder infection or UTI so those are two causes crossed off this list. Two of concerns at the top of my list are bladder prolapse (which is common post-hysterectomy and I have a family history) or the adhesions have spread and now my bladder is involved. I’m not sure which one would be better.

I see my endo doctor June 8th and part of me wants to get on my knees and beg that she does surgery. Risks be darned but I need my life back. I know I will always have a life with chronic illness but there needs to also be a quality of life.

I NEED A LIFE.

MY LIFE.

Am I absolutely crazy to beg for a surgery? I know the risks. There are a lot of them. I am not going to play that down. But at what point do the possible benefits from surgery outweigh the risks?

The last general surgery I saw said that the chances of anyone ever being able to do anything laparoscopically are slime because of scar tissue. She said that by just by feeling my scar from my vertical obstruction incision (which honestly feels like a rope) that any adhesions would likely be dense. When I have my gallbladder removed last summer, they could not even use my belly button for the laparoscope because it has been used too many times. My poor belly button.

Maybe we’ll get lucky. Miracles happen right?

All I know is that something has to give. Something has to change. We know there is a problem and I’m tired of feeling like a ticking time bomb. I’m tired of constantly being at a stalemate. Its time to make a move.

Have you ever felt like you were at a stalemate? Who made the first move?