Tag Archives: research

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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 …

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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’…