If you are silent

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This quote has stuck with me a long, long time. Because something about it sort of struck me as intrinsically true for chronic pain.

The first truth is Insurance Companies. They will when you are on a long term leave come up with these random things for you to participate in. It could be physio or exercise or yoga or acceptance therapy. Could be anything. To ‘help’ you. You know you have to do it or you are ‘non-compliant’. So you do, because it may very well help you cope better. Then they find some reason to do with that, nothing to do with actually reality mind you, to cut you off. Because you are silent. And my recommendation if you are in this situation? Don’t be silent. Tell them what hurts, when it hurts, how it hurts. When it is difficult, when they expect too much. What happened Afterward? Where you laid out that day, two days, three days? Did it amplify your pain? If anything happens say so. Document it yourself very carefully and in detail. Because they will say you improved enough to go back to work even if your migraines are still every bit as daily as they were. And they will say you enjoyed it even if you are suicidal due to the pain.

The second, broader. It is society itself and people we encounter like doctors and employers who we have to deal with with chronic pain. If we suffer silently they will kill you with that pain and think it is fine to do so. That pushing through it, is the way to go. That forcing you to conform is the way to go. That more pressure, gets more results. That ultimatums will ‘help motivate you’. But you have to be clear and concise with people you encounter with your chronic pain. This pain is getting to me. I Cannot cope with it. I Cannot function with it. It is making me severely depressed. Otherwise, their indifference will kill you with pain. Their forcefulness to get your to conform will kill you with pain.

Yes, they will this it is okay to treat you as they do unless you stand up for yourself. Demand treatment from doctors. Demand accommodation from employers. I never have gotten anywhere from being polite, accepting and trying to please others. No, I blame myself for everything. Being sick, being unable to function, failing to function and for not being able to push through the pain all the damn time. Blaming myself though is self-stigma. I get blamed enough by others that I really don’t need my help on this one. We need to stand up for ourselves.

When we are in severe, relentless pain we have to advocate for ourselves. We are often undertreated. Doubted. Judged. Stigmatized. Beaten down and blamed for what isn’t our fault. As we are simply struggling to Survive. It is amazing that they have no clue what a horrific impact they have on us. How drastically their treatment can actually make us significantly worse. As for insurance companies… well, who even knows what their ‘burden of proof’ line actually is. I certainly don’t. I think they make it up as they go along.

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Poem: Migraine

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This poem I simply call Migraine.

Lights waved and danced in my eyes,

Numbness trailed a cold line down my face.

How the migraines makes the senses lie,

But that is but a taste.

The pain struck like a bolt from the sky.

Light became so sharply insane.

Sound so sharp, even a sigh.

The world itself adding to my throbbing pain.

 

I wrote it quickly to go with the double exposure image I made. As a result, I like the first stanza better than the second. I might have to work on it more. Fine tune it.

Store

I added my zazzle store to the Sections pages to check out as I am actively adding products into it right now.

Here are some of the new ones. Today I was focusing on sayings that I have made up over time and put on memes for my pages. So everything on the page is something I have said. Nothing is from somewhere else.

I have not gotten around to the men’s version yet as it is time-consuming. I also have not gotten around to my migraine collection. This is a long-term project to get these all up and running. Procrastinated too long on them.

Migraines at work?

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Migraines at work are not easy to manage. With my daily intractable ones I couldn’t manage them at work. My productivity was low. My absences high.

Here, however, is an article by Teri Robert on HealthCentral about working and migraines: Tips for Handling Migraines At Work

  • She mentions things like: Anti-glare screens, a no scent work environment, keeping hydrated with water.
  • She says to take your triptan at the first sign. Because as we all know, the earlier we take it the more effective it is. Assuming it is your triptan day, of course.

I have some additions I thought of that might help.

  1. Other things I would recommend are Axon Optics or Theraspecs glasses to help with photophobia in the work environment and those evil fluorescent lights.
  2. I believe people buy diffusers they carry around their necks for scents to help with migraines like lavender, or peppermint. Something like that may help at work.
  3. Finding somewhere where you can take a nap or do some meditation would also be very beneficial.
  4. Bring with you a migraine balm and magnesium oil you can apply when you feel an attack coming on.

 

 

Migraine treatment: Full throttle

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So I have been talking managing migraine pain very seriously lately. Can’t use a triptan except for 2 days a week. So what to do. What to do. Go full throttle is my answer.

I use ice right away and hope I can knock the pain down a level. If so, a good head start.

I use magnesium oil to get that magnesium into me fast.

I put a migraine balm, Japanese mint oil, on my forehead and temples

I put these CBD cream on my neck, shoulders, and jaw. If I do not have this, then something high in menthol.

I do some meditation.

I take zofran, ginger, and Gravol for nausea. Maybe have a peppermint tea as well.

Water for hydration.

And I put Lavender and Sage in my diffuser. Sometimes Bergamot.

Then when the pain begins to rise I repeat any number of these steps to keep it at bay. If the nausea gets worse, more ginger, or zofran, or tea or gravol.

 

It is a full on battle plan every single day. But some days I find this works. I can knock it down to a 5 and keep it there most of the day… sometimes it bumps up in the evening. Some days, usually the ones where I wake up with it, or hormonal ones, or epically painful ones…. not so successful. And I feel my ice treatment would be better if I had an ice hat, so I need me one of those in my life. I can’t imagine being able to do this anywhere but at home. It is non-stop all day. And it only works sometimes. So a lot of effort to get the pain down. Nevertheless having it work gives me a pain break… less pain to get through the day with.

But as soon as I leave the house, all for naught I’m afraid. Migraine amps right back up from all the light, the sounds, scents and having the drive. So no idea how people get around that.

Essential oils: Lavender

A study in European Neurology found_inhalation of lavender essential oil may be an effective and safe treatment modality in acute management of migraine headaches._ in their study..png

I have been cultivating different ways to manage the pain during the day. Being intractable means I have to go full throttle on other methods. Use what you have available to you. Now lavender isn’t my favorite scent for an essential oil, but I like mixing it with Sage. There is some research behind lavender which is interesting. (As I mentioned earlier in the week I rather like peppermint as well for nausea).

This is the study I mentioned:

METHODS:

Forty-seven patients with definite diagnosis of migraine headache were divided into cases and controls. Cases inhaled lavender essential oil for 15 min, whereas the control group used liquid paraffin for the same time period. Patients were asked to record their headache severity and associated symptoms in 30-min intervals for a total of 2 h. We matched the two groups for key confounding factors.

RESULTS:

The mean reduction of headache severity in cases was 3.6 ± 2.8 based on Visual Analogue Scale score. The reduction was 1.6 ± 1.6 in controls. This difference between the controls and cases was statistically significant with p < 0.0001. From 129 headache attacks in cases, 92 responded entirely or partially to lavender. In the control group, 32 out of 68 recorded headache attacks responded to placebo. The percentage of responders was significantly higher in the lavender group than the placebo group (p = 0.001).

CONCLUSION:

The present study suggests that inhalation of lavender essential oil may be an effective and safe treatment modality in acute management of migraine headaches.

Pretty good response rate to the lavender over the placebo. Not a bad reduction as well. When you think about reduction, I would have expected less, but this is decent. I would have preferred a larger samples size, but I always say that with these tests. If it isn’t a drug, the sample size tends to be lower.

The Journal of herbal medicine also did a study, longer in duration. Double-blind. Reporting a reduction in frequency and severity.

There is no cure for migraine, but preventive treatments are usually applied to reduce the frequency and severity of headache attacks. The purpose of this study was to investigate the effect of lavender as a prophylactic therapy for migraine in a randomized controlled clinical trial. This double-blind and placebo-controlled study was conducted over a period of three months. Patients were assessed for migraine impact at the baseline and at the end of the study, using the Migraine Disability Assessment Scores (MIDAS) questionnaire. In the case group, after three months of lavender therapy, the MIDAS score was reduced. The reduction in MIDAS score was significant (P < 0.05), when compared to the baseline and also control group. During the treatment, participants did not report any complaints or side effects. The results of this present study report that the frequency and severity of migraine incidents were reduced in those participants using lavender therapy during the three month trial.

It is one of the recommended aromatherapy migraine essential oils for your repertoire to try. I like the research. It makes me pleased there was some positive results for it. Mainly because if I believe there is positive effects, it will increase the positive effects I will experience. Just like belief in a medication working, increases its chances of working. So I take these results as a positive indication that lavender is a nice scent to add to my repertoire because it could do good things.

Here is an article to get you started on aromatherapy for migraines I use more than a few on the list myself. But lavender I am trying out specifically when I have a migraine and seeing if can be one of the ones that helps me manage the migraine.

Nausea: what are the options?

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The nausea.

What do we do about nausea?

You have to have your game plan. Your plan of attack. What to do first, second and third. You have your game plan. Your plan of attack. What to do first, second and third. Because one thing we all don’t want is progression to vomiting, although sometimes, just unavoidable.I will say this, nausea has been constant for me for over a year now. It is the bane of my existence.

1-Medication: Medications that treat nausea are prescription and are called antiemetics. One is called Zofran, and is my current anti-nausea med. Others you may have heard of, or are on, are proclorperazine (Compazine), promethazine (Phenergan), and metoclopramide (Reglan). I know many people on Phenergan. My doctor often mentions metoclopramide but it interacts with another med, but back in the day, it was my anti-nausea med. I should mention in Canada only zofran and metoclopramide have been mentioned to me. What we do have here is Gravol for OTC and I tend to use that as well. Gravol is Dimenhydrinate.

Personally, the zofran doesn’t always cut it for me. I have some intense, constant nausea. So I have been trying some of the other common things we use for nausea with migraines.

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2- Peppermint: One that is tried and true is peppermint tea. I love it in tea form. It helped me one time where all I could handle was this tea for days. It truly does work. But in essential oil in a diffuser it has also been used for nausea.

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3-Ginger– I knew about this one for some time, but have just started putting it to some serious use to see what it can do. You can buy pure ginger candies. You can also have ginger tea. You can by ginger pills actually to avoid the taste. In Canada Gravol sells ginger pills and ginger with willow bark pills. As a perk, since they can go together, maybe it will help with diarrhea as well. And for those of us with vertigo is it said to help with that too. So a lot of symptom effects. Specifically, I am aiming for a decrease on nausea. The candies are Gin Gins that I am eating, but there is a brand of just ginger I am intending to check into. I am not sure if I would like the tea or not, since it is the spiciness of the ginger on my tongue I like. See Ginger post.

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4-Auromatherapy: Essential oils and little diffusers you wear around your neck can help with nausea. As I mentioned, peppermint is one mentioned for that. I had read somewhere that lemon is one but not for me since it really makes me nauseated. So try lemon or peppermint. This site actually mentions some more for nausea to try out.( I do like bergamot, so maybe worth a go on that one… it is light and sort of a citrus scent).

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5- Marijuana- I actually was told my pain clinic would put me on the pill form due to my nausea alone. They don’t believe there is enough evidence for pain, but there sure is for nausea. I am considering it, especially if I drop more weight. I am not posting to studies for it, but there is quite a bit of research on it for nausea.

 

Essentially, I have been using ginger, peppermint tea and essential oils, Gravol and zofran. And that may seem like a lot but this nausea is quite insane. So every bit counts, to be honest. Things like peppermint tea are great for at night as they have no caffeine and are relaxing.

Ginger

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Ginger has long, long been used for nausea, upset stomach, and diarrhea. We often use it for migraine nausea but now I am thinking maybe even migraine related diarrhea.

 

The study in my image references comparing ginger (Given in power form) compared to a triptan (sumatriptan) and found them similarly to abort a migraine within 2 hours.

I use these two products. Gravol is a Canadian company that has a great product on their own but they also have this natural product. This one is ginger and willow barks. I actually use many things for my nausea. From peppermint tea, ginger, my medication, and actual Gravol. Because my nausea to date caused me 25 pounds in weight loss. It is unhealthy and I’ll manage it any way that I can.

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Migraine.com referenced a different study than I did and here it is:

One over-the-counter remedy containing ginger and feverfew is called GelStat Migraine. The product is applied and absorbed under the tongue, for faster delivery. GelStat’s makers say sublingual treatments take eight minutes to reach their peak level in the body, compared to 70 minutes for a tablet or capsule. One study of 40 migraine sufferers released at the 2006 American Academy of Neurology annual meeting compared GelStat with an inactive placebo. Here are the results:

  • Some pain relief after two hours : GelStat 65%, Placebo 36%
  • Complete freedom from pain at two hours : GelStat 19%, Placebo 7%

Here are the listed side effects Migraine.com mentioned.

  • Gas, belching
  • Bloating
  • Heartburn
  • Nausea
  • Irritation or bad taste in the mouth
  • Heartburn

I haven’t had any issue at all, to be honest.

The list of who couldn’t take it should be noted, however.

  • Pregnant and breastfeeding
  • People with gallstones, ulcers and IBD
  • Those with weakened immune systems
  • May increase risk of bleeding with blood thinners
  • May increase side effects of drowsiness and slowed thinking
  • May interfere or interact with heart medications, vasodilators, or drugs that are broken down by the liver
  • May interfere or interact with drugs for nausea, vomiting, arthritis, blood disorders, high cholesterol, blood pressure, allergies, cancer, inflammation, stomach acid or weight loss

And here lies the problem because it may interact with Your Nausea med. So there is that. In my case I may have an ulcer so I should be careful as well I suppose. So if you take ginger to treat your nausea I’d be cautious about it and not be taking it with your regular nausea med without discussing that with your doctor.

As for it easing symptoms. I have used it in addition to some of the other things I do. Like ice, Magnesium oil and meditation… and I have eased my pain quite a bit when I combo pack these things.

10 Reasons Migraineurs Are Awesome

I think these guys get migraines. I think they feel my pain. Just saying. All that head butting..png

Migraines are not in and of themselves awesome to experience. They are a neurological condition and pain can be invited to that party, but not necessarily. It is a mind-blowing experience and not a positive one. So why would migraines make migraineurs so awesome, you wonder? We experience a very difficult experience, sometimes very often. I think that makes us very strong people, and very supportive people as well. We develop strong communities and make great friends in those communities. Here are some other things:

1. A super sense of smell — During a migraine attack, some of us have osmophobia, known as a very strong sensitivity to odors. We can smell your perfume a block away. We can smell those stinky socks you took off in the other room. It is so profound an ability, we might be able to smell what you had for dinner two days ago. The only thing that messes with this trick is that some people also get olfactory hallucinations; in other words, they can smell things that are not there. Like burning toast and sewer. Or rancid goat breath. Sometimes it is really hard to label phantom smells. And since we have a super smell machine, we might look all over for phantom smells. Nevertheless, superhuman smelling makes migraineurs awesome. Misplace your sandwich? We are on it! Think the milk is a little off? We will know it.

2. Superhuman pain tolerance — I’m not one to brag or anything but I can stand, communicate and even move while my head is imploding. This is a skill mastered with chronic migraines, which are classified as more than 15 migraines per month. Once you reach migraine warrior class, I mean chronic, you have to function in some capacity with them, in order to have a life. So we develop an astonishing pain tolerance. We are talking functioning on a seven or eight on the pain scale. Not so much when we hit 9, but I doubt many people can master that class of functionality. Not saying this skill is awesome in itself, but we need it… we really need it.

3. We can sense weather changes — Some of us may have a sense of an impending storm and other barometric shifts. It really rather smacks us right in the brain noodle. I sense… oh my god, that hurts like hell… yeah, a storm is coming. It’s useful if I’m there when you are having an outside gathering. I am your weather alert.

4. Some of us hallucinate without drugs — Yes, many of us get the “perks” of hallucinations without having to take drugs. We might have migraine auras and see flashing lights, translucent raindrops falling from the sky, cascading multi-colored sparks of color falling over our vision. We might see warping motion of objects that are not moving. We might have hallucinations involved with Alice in Wonderland syndrome (AIWS) that cause our body to morph larger or smaller to our perception or the world to get bigger or smaller. I have persistent migraine auras, so I have auras with or without the actual migraine. Most people find auras very unpleasant and disruptive; however, since I get them so often I tend to just enjoy the varied light show. They can be very visually disruptive given we generally need to see and AIWS in particular can be very severe. It is just an experience that we may not share with others. It is unique. It is indescribable. Sometimes entrancing and sometimes extremely disruptive. Sometimes visual and sometimes tactile.

5. We rock the sunglasses and hats — For those of us with an excessive loathing for light due to photophobia, we do not leave the house without sunglasses and/or a hat. And we rock it. Some of us actually wear FL-41 specially tinted glasses for inside that specifically help with photophobia indoors, and can be used outdoors in sunglass form. People often give us a double-take. Wearing sunglasses inside, are we just that cool? No, but coolness is a side effect I’m good with.

6. We live in moderation — You won’t find us getting carried away, because we have to watch our migraine triggers. Too much sleep. Not enough sleep. We likely will not, for example, go to a loud bar and get very intoxicated because a) a loud bar could be a trigger by itself and b) alcohol can be a horrible trigger. I personally learned this lesson in my early 20s when I was first diagnosed. And a migraine when you are intoxicated? Not recommended. So we learn moderation. Keep it mellow. At times that means work-wise as well.

7. We are always prepared — Yes, we are always prepared for impending doom. Since we must live our lives, when we do anything we are prepared for an attack anywhere we go. Migraine balms, medications, heavy-duty sunglasses, hat and maybe some icy cold patches. For example, we may want to get our rock on at a concert, but the loud noises are a massive factor, so we prepare and bring our migraine emergency kit and earplugs. Hope for the best, prepare for the worst.

8. We are spontaneous — Because a migraine may hit at any time, we do not do plans very well. We often cancel plans and feel exceptionally guilty about this. But, my friends, we do spontaneous very well. Because those low pain days or migraine-free days? We want to take advantage of them. We live for them. We want to experience our lives during them. Like now. Like, let’s get out there right now and do something — in moderation, that won’t trigger a migraine, of course.

9. We are great at diets and supplements — Many of us have tried so many restrictive diets to help with our migraines, and we are great with them. We know paleo, high protein, Mediterranean diet, anti-inflammatory diet and the ketogenic diet. We likely can recommend recipes. Have helpful recommendations. Tell you if we happened to lose weight, and let’s just say if we gain weight on every preventative med we are put on, we will probably consider that to be a plus. Since many of us have tried and are on numerous vitamins and supplements, we are a fountain of knowledge on them. We know what they are for, what they help with and even what the potential side effects are. We know all the good migraine ones.

10. We are empathetic — We understand pain. We understand pain that knocks you out all day. Or even for days. We understand pain that sends you to the ER. We understand pain that people don’t quite understand or can’t quite relate to. We understand it when pain becomes chronic, people understand it even less. So we empathize with suffering. We know how difficult it is to manage and cope with invisible disabilities and chronic pain of any sort

Tinnitus: The bells they toll for you

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Tinnitus “TIN-uh-tus” or “tin-NY-tus” is the worse sound in the world. My volume has been quite loud lately but, apparently, I have no control over the volume. Tinnitus is simply the perception of noise or ringing in the ears. The bells, the Bells!! It isn’t a condition itself but rather a symptom of another condition. Such as, hearing loss. Or, migraines. Or, hell, could be a build-up of wax in your ears. 10-15% of people have experienced tinnitus before.

You can hear; clicking, buzzing, ringing, roaring and hissing. Low pitch, high pitch. Constant, periodic. So loud it interferes with other sounds, or so quiet you only notice it when it is quiet around you.

One cause, by the way, is loud noise exposure. My Step-father has this kind. I had read a study specific to this kind that said melatonin helps with this very specific kind. And he finds it works, when he takes it regularly.

I have chronic tinnitus. But I have TMJ as well and chronically it isn’t that loud or noticeable. Now with a migraine it tends to get louder and a much higher pitched. With the streak of bad migraines lately it is been quite loud. I usually listen to the radio at night to distract myself from this sound in order to sleep. And it is far louder than that lately. I am astonished I do manage any sleep, to be honest.

With migraine with aura, tinnitus can be an auditory aura. For example, when I say it gets louder and higher in pitch it tends to be in my aura stage. But then you want to make sure it isn’t Meniere’s Disease, and if you get hearing loss, this is something to look into.

Yet.

If you get vertigo and dizziness with your tinnitus as I sometimes do you could also get, as I do, Vestibular Migraines (used to be called Migraine Associated Vertigo or MAV).

Yet.

It can occur in the Headache phase of a migraine.

If a specific cause of the tinnitus is identified, treatment may be available to relieve it. For example, if TMJ dysfunction is the cause, a dentist may be able to relieve symptoms by realigning the jaw or adjusting the bite with dental work. If an infection is the cause, successful treatment of the infection may reduce or eliminate the tinnitus.

Many cases of tinnitus have no identifiable cause, however, and thus are more difficult to treat. Although a person’s tolerance of tinnitus tends to increase with time,19 severe cases can be disturbing for many years. In such chronic cases, a variety of treatment approaches are available, including medication, dietary adjustments, counseling, and devices that help mask the sound or desensitize a person to it. Not every treatment works for every person. Vestibular.org