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Confusion is a word we have invented for an order which is not understood.
Henry Miller

   I have never been so confused in my life than right now. Whatever disorder I have, all possibilities for them are confusing, under-recognized or misunderstood.

   Here are the facts I know to be true about my illness:

1. I have Familial Hemiplegic Migraines, diagnosed as Severe migraines around 1987 when I was a child.

2. My father had migraines as a child and essentially grew out of them by college age.

2. I have now and always have had migraine with aura.

3. As a child, the aura presented itself in the forms of visual disturbances, numbness in hands, arms, legs, and mouth, hyperventilation, vomiting, disorientation, slurred speech, confused thoughts, and pounding headaches.

4. At age 10, I got glasses for near-sightedness

5. My typical Migraine “attacks” would proceed like this: visual disturbances not allowing me to see someone or something as a whole, but rather in an altered state, followed by numbness in a hand (usually the right side) feeling heavy and tingly to the touch- sometimes fingers curling inward to the palm, then when I could feel the hand and arm again, it might spread to the other arm, or legs, but most often up the neck into the mouth and tongue making it difficult to speak. When it became difficult to speak, it was also difficult to think clearly as if I knew what I was trying to say, but the words weren’t making sense. After the numbness would leave, then the headache pain would set in for a short time up to a day (sometimes 3 days in extreme cases). The next day would usually be the time when I would feel drained as I imagine a hangover would be and I would be afraid of getting what I would call “aftershocks” or smaller occurrences of the attack (which would occasionally occur)

   So those are the things that I know to be true…everything else has been a mystery…

I am now in my early 30s and suddenly every day has been an onslaught of unexplained symptoms. Research and support are very important to the individual who has chronic illness with seemingly phantom symptoms. It is all too easy to feel like you are alone, a freak  of nature, that no one understands what you are going through, that doctors can’t help you, or that you can’t share your experiences with people because you might sound crazy and others will say that “It’s all in your head”. Sometimes I wish I could touch a person and they could automatically feel what I feel and see what I see, just for a few minutes to better understand. I find trying to describe what I am experiencing visually is the hardest part of all. 

   The constant quest for answers and inability of doctors to help is what leads people with chronic illness to researching their own symptoms. This can be both a blessing and a curse. As they say, “Knowledge is power”. Every time I search the net or in books to find my symptoms, I keep hoping I will have a moment where I can shout, “Eureka! That’s it! That explains everything and I am not going crazy!” Sometimes, I do find things here and there that make me think I am at least on the right track.  The downside is that one can find too many things that seem similar to the experiences he or she is having and (like me) become completely confused about which direction to pursue.

   So, here is a list of possible conditions I could have (keeping in mind that migraines can have comorbidities which are other illnesses linked to the migraines):

1. Depersonalization

2. Visual Snow

3. Malabsorption

4. Silent Migraines

5. Persistent Positive Visual Phenomena

6. Intracranial Hypertension

7. Peristent Aura Without Infarction

Those are just the ones I have found out about through comparing my symptoms with others and doing my research.

   Where do I go from here? Track my symptoms and possible triggers as much as possible. Then try to see some specialists. I am currently looking into seeing a neurologist, neuro-opthalmologist, or naturopath. If one doesn’t have the answers, I might need to try them one at a time until I find someone who does!

 

 

Confusion is a …

Being Strong, by denise of dentheARTS

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Being Strong, by denise of dentheARTS

“You Never Know how strong you are until being strong is the only choice you have”

Denise of dentheARTS is a painter who creates a wonderful blend of bold colors, positive messages and soulful images. Her works show great insight into emotions and I personally can connect with them in relation to my migraine and non-migraine experiences. Here is what Denise has said about her work on her Etsy shop profile. I hope everyone will stop by her sites!

“If you love wild, abundant colours, if you want to be taken into a magical world full of life and energy, and come out of it with a positive happy feeling, you’ve come to the right place.

Painting is my passion. It gives me energy and makes me happy. And I want to share that feeling with you. I want to touch people with my art, evoke emotions, make the world a little brighter.

So sit down and take a moment to look through what I have to offer.

You can find more about me and my art here:

blog: http://www.denthe.blogspot.com
facebook: http://www.facebook.com/dentheART
website: http://www.denthe.com

The link for her Etsy shop is:  https://www.etsy.com/shop/dentheARTS

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“I wonder if I’…

“I wonder if I’ve been changed in the night. Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is ‘Who in the world am I?’ Ah, that’s the great puzzle!”
― Lewis Carroll, Alice in Wonderland

I am beginning to forget what it felt like to be normal…or at least normal for me. I have always had to deal with a lot of stress, anxiety and uncertainty, but I used to balance it with a good sense of humor, imagination, creativity and passion.  I still feel creative and imaginative, but every day I feel less and less like myself.

Yesterday, in my continuing research, I discovered something that became an “a-ha!” moment and it was like a light bulb had suddenly turned on over my head. I have been feeling more strongly than ever lately that the strange sensations I have been experiencing are Depersonalization and that there is a definite link between Depersonalization and migraines. I had wondered if I was the only person to experience this connection. Then, yesterday, I came a book called, “Depersonalization: A New Look At A Neglected Syndrome”, by, Mauricio Sierra, and in it was a section titled, “Depersonalization and migraine”!  But wait, there’s more! The author of the book talks about a person named Shorvon who was the first person to report an association between Depersonalization and migraines in 1946:

“Shorvon made the puzzling observation that, frequently, the onset of depersonalization    in a migraine sufferer seemed to coincide with a cessation or decreased frequency of headache episodes.”

The author then goes on to talk about a 35 year old male he had observed who had a 5 year history of constant depersonlization and a lifetime history of frequent migraine attacks that normally had feelings of depersonalization prior to an attack. Once his depersonalization became more consistent, his migraine attacks ceased and he described the feeling as though, “I’m about to have a migraine attack, but it never comes”.

This new information has given my brain the sensation of being tossed into the spin cycle of a washing machine or dryer. It has caused a whirl of thoughts, emotions and questions. My full blown migraine attacks seem to have lessened in frequency, but I have felt prolonged aura and feelings of depersonalization in place of the migraines. A 35 year old person has experienced the exact same thing I have been experiencing in my early 30s, which means I am not the only one.  If I am not the only one,and a connection between migraines and depersonalization has been in existence since at least 1946, why is it not more commonly known (especially by doctors we are seeing for treatment) and why isn’t there a cure?

Mauricio Sierra notes, “The Precise nature of the association between migraines and depersonalization is currently unkown”.  In a clinical correspondence from Dr. C. Majella Cahill, Department of Psychiatry, Royal College of Surgeons in Ireland, Majella points out that “The relationship between migraine and depersonalization/derealization is under-recognized by both psychiatrists and neurologists”. She goes on to say that:

“Many psychiatrists are unfamiliar with the IHS classification system, in particular the    concepts of migraine aura without headache, migraine with prolonged aura, migrainous infarction or migraine status, suggesting the need for greater specialist neurology input in the assessment of patients presenting with depersonalization/derealization. Further research on the nature of the association between migraines and depersonalization/derealization is required and may add to our understanding of the underlying pathophysiology of these disorders. Reports on the response of depersonalization symptoms to treatment for migraine aura would also be welcome.” (http://www.elizabethselwyn.50webs.com/Pdf/C.%20M.%20CACHILL%202004.pdf)

What does this mean? In my opinion, It is a bit like, which comes first, the chicken or the egg? Did the Depersonalization come from the migraines or the migraines from the depersonalization? From what I have read, it seems it can be either. Some experts in depersonalization think that in some people there is a predisposition toward the ailment and it is often triggered by traumatic events, anxiety and stress, much as migraine attacks can be. Sleep deprivation is also a common factor between migraines and depersonalization.

For migraine sufferers, feelings of depersonalization (being disconnected from your body and reality) can occur prior to a migraine attack, or in the interval between the aura and the headache itself. Imagine then, if the headache never comes and you are left with a constant state of aura. It is a very unsettling state of being, made more unsettling when one realizes that most doctors do not know whether to treat the migraines or the depersonalization and can not cure either. It is all trial and error, with patients being the guinea pigs.  This particular guinea pig is not giving up hope and will continue to research and try new things toward achieving a better quality of life. After all, there are new findings in Science and medicine all the time. When my dad was a kid in the 50s, he was misdiagnosed with epilepsy because there wasn’t as much knowledge, research and awareness about migraines then as there is today. Just think about how much we will learn in years to come!

“I wonder if I’…

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“The question is not what you look at, but what you see. ”
― Henry David Thoreau

   Yesterday, for a long while after coming out of the movie theater, I experienced what I have come to call my “out of body” experiences. Everything appears too bright and just not normal as if I am not seeing something all at once, I can look down at my hand and know it is mine, but it will feel as though it is not connected to me, etc. The closest term for these symptoms that I have found in doing my research is Depersonalization. I don’t know if that is what I have, but it is almost like prolonged migraine aura without the migraine itself.  Now, one might say, “That is completely natural for your senses to be off after coming out of a dark theater into the light”, and I would agree except that this happens at other times as well. 

   For those living with migraines, one must take on the role of detective on a daily basis, trying to locate clues and facts, gather and reject possible suspects. For instance, could my strange symptoms be related to my diet? Could they be an illness other than migraine? Could it be a neurological trigger like stress or anxiety? Could it be barometric pressure of a storm coming? Hormones? Poor eyesight? Sensitivity to light, sounds or smells?  The list goes on and on.

   Since I am still trying to work out the diet and there is no way for me to tell at this time if what I am experiencing is connected with barometric pressure or others, I am following the possible lead related to lighting.  I am very near-sighted and wear glasses. My glasses have transition lenses because I am very sensitive to light and they serve as sunglasses, changing to adapt when I go between inside and outside. I have been toying with the idea that different kinds of lighting effect me since I have had a couple of migraine “attacks” in public places with florescent lighting, but I have also had a full-blown attack in a movie theater before and yesterday’s out of body feelings have me wondering about screen size and proximity as well. Do my eyes and my brain have a difficult time making sense of a large screen? Does it then affect all of my visual sensibilities for a prolonged amount of time afterward? I don’t know the answer, but it bears further scrutiny. 

  As usual, if anyone reading this can relate or can provide helpful information and/or insights, please feel free to comment. 

“The question i…

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A woman is like a tea bag – you never know how strong she is until she gets in hot water. – Eleanor Roosevelt

Most days I feel like I am treading in hot water, trying to stay afloat. This week has been a difficult one from the start! 

Continuing to deal with unexplained health symptoms, I found some solace in the Celiacs.com website forums. I don’t know if I am Celiac because I have never had the money to be tested, but in the forums, I was able to post questions about symptoms I have been experiencing that could be connected with food allergies and several people weighed in with their opinions, experiences and advice on the issues. Some of it has helped shed some light, although when there are conflicting opinions about which foods should be eaten and avoided, it makes me more confused than ever!

At the beginning of the week, I was feeling really low. I had what I call one of my “meltdowns”, after I came to the conclusion that I would have to close my personal bank accounts until I could resolve health issues and begin working again. It was a very tough decision since I have managed my own accounts since I was a kid and closing them contributed to feelings of isolation and loss of independence I was already experiencing. 

When you are constantly dealing with unexplained frightening health concerns, doctors and medical bills add up. If you lose a job or several due to those concerns, there is no money coming in to pay for the bills. It is a catch 22. 

After a couple days of “woe is me” thinking, I decided I am going to push on, keep researching and hope for the best. As it turned out. things have begun to look up slightly. After months of not being covered, health insurance has finally been approved through my husband’s job. I also came across a local naturopathic clinic and made an appointment for a free consultation with one of their doctors who specializes in migraines, headaches, and digestive disorders. I am very curious to see what she will say about the many symptoms I have been experiencing, since my primary care physician seems somewhat limited. 

My collection of checked out library books has now grown…not completely sure how many I have at the moment, but hubby, the librarian and I had a good laugh over the fact that I hadn’t reached the 100 book limit yet! I have checked out books about allergy free recipes, the Gluten free lifestyle, stress and anxiety relief and management, money management, etc. The two I am most impressed with at the moment are:

1) Wheat Belly, by, William Davis, MD (anyone who is thinking wheat/Gluten is impacting their life in a negative way should read this because there are so many areas affected that are not just digestive…neurological being one of them!)

2) Keep It Together, by, Kirsten M. Lagatree (“200+ tips, lists, and solutions for everyday life”. Need to work on health, fitness, organization, moving, money management, investing, you name it…it seems to be in here!)

In addition, to reading, I am continuing to work on my crafts projects, which I always find very relaxing. Sales in my Etsy shops had been very slow the past couple months, but I got 2 unexpected sales today, which made my week. ;) My shops have fun collectibles and craft items that make great gifts. The teams I belong to on Etsy have offered a great sense of community when I have felt isolated as well. So for those who are interested, check out my shops.

Escape From Reality: https://www.etsy.com/shop/EscapeFromReality

BigKidVintage: https://www.etsy.com/shop/BigKidVintage

Well, thanks for taking the time to read all this. I hope we can all help each other in some way. I welcome comments and would love to hear from you.

A woman is like…

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“Choice, not chance determines one’s destiny”-anon

If you read my last post then you know how overwhelmed I have been feeling about the prospect of switching to all Gluten free cooking. Imagine sitting in the middle of 30+ library books just about ready to eat them for fiber rather than attempting to cook!

I kept staring at the pages of the books and thinking, I could never write out all of the recipes in time before they would have to be returned to the library and it would kill off my hand to write so much. Then of course, what would I write the recipes on and where would I keep them all?

I decided (or chose) to look up gluten free blogs and recipes online. I spent a better part of the day sorting, following, favoriting and subscribing to things I thought were relevant. Then by chance or fate, I came across the best tool I could possibly find! 

Perusing the site, http://www.stockpilingmoms.com, I came across a really yummy looking recipe for egg salad avocado wraps and it gave the option to “clip” and save or print the recipe. This led to the discovery of the ultimate cooking aid: http://www.ziplist.com!

I registered for free at Zip List and immediately found it easy to use! I could find a recipe on a website and save it into “my recipe box” on Zip List as if I were creating a “pin” for Pinterest (for those of you who are familiar with Pinterest). It also gave the options of adding tags to sort the recipes, making shopping lists and meal plans. As if that wasn’t good enough, if you make a shopping list of ingredients, Zip List will give you a few price comparisons for shop sales in your area.

So needless to say, I was already riding pretty high yesterday from finding Zip List and saving recipes I had found online, when today’s discovery really put me on Cloud 9! You can use Zip list to create or type in recipes! *Grinning like a fool*

I just love having a sense of direction and purpose (it is such a change from my usual hamster spinning in a wheel impression). My new project is to use the library books to find Gluten Free recipes that I would consider making/eating and type those recipes into Zip List where they will be saved and categorized in my recipe box. Then, when it comes time to cook up some food, I will move this computer (behold the power of a laptop!) to the dining room table, pull up the saved recipe of choice and then, voila! We are off and running…or…cooking!

I don’t know how long this project will take me and I will probably have to renew some of these books many times, but you have to start somewhere!

“Choice, not ch…

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All people are made alike -
of bones and flesh and dinner -
Only the dinners are different.
~Gertrude Louise Cheney

Gluten free. Two words that seem to be popping up everywhere.

What is gluten? Wheat, Barley and Rye

You might say, “so, what’s the big deal?” Some people dismiss gluten free as just another fad diet. How is a gluten free lifestyle any different from people who count calories, eat only protein, don’t eat bread or white foods, etc?

Until about a month ago, I wouldn’t have known the difference either. I hadn’t really paid much attention to anything related to nutrition unless I was (a) trying to lose weight or (b) trying to avoid my migraines.

My purpose here is not to preach about the miraculous changes of “going gluten free”, but rather to share what I have learned. What I have learned only recently is that a sensitivity or an intolerance to gluten seems to be the key to unlocking the mystery of my migraines that has been plaguing me since I was a young girl.

Since I don’t know the first thing about cooking and I suddenly find myself having to carefully inspect every label and make my own meals, I am feeling very overwhelmed. Being the eternal student that I am, I immediately checked out every Gluten free recipe book I could find at the local library. I think I currently have about 30 on my dining room table with more on the way! 

The only thing that is keeping me from chucking each book out the window and raiding the pantry because I am starving, is the knowledge that I don’t have to suffer from mysterious illnesses and their debilitating side effects for the rest of my life.  

I am attempting for the first time to write an ebook, and I don’t know the first thing about how to get one published and how to market it, but it will go more in depth into my history with migraines and what I have learned from years of personal research.

If anyone has any positive feedback on how to switch entirely to a gluten free lifestyle or on publishing and marketing an ebook, please comment on this post.

 

All people are …

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“How puzzling a…

“How puzzling all these changes are! I’m never sure what I’m going to be, from one minute to another.”
― Lewis Carroll, Alice’s Adventures in Wonderland

Charles Lutwidge Dodgson, aka Lewis Carroll was a “migrainer”.

An entry in Wikipedia states: “In his diary for 1880, Dodgson recorded experiencing his first episode of migraine with aura, describing very accurately the process of ‘moving fortifications’ that are a manifestation of the aura stage of the syndrome.”

It is no wonder I have always related most closely to the quotes from Alice in Wonderland.

“How puzzling a…