I’m NOT crazy!

I’ve had migraines for most of my life. I’m 56 now, and I remember the first one at the age of 7. Not something you want to remember. They steadily got worse over the years, and numbness and tingling became part of it as well. Test after test. The spina bifida came out, with a tethered spinal cord, which of course they figured was the cause. Release the cord, fix the cause. Had that done three times now.


My migraines have gotten worse. Horrible. I found the Topamax helps the most. Yes, I know the risks, but I don’t get anything to help for when I actually GET a migraine. My doctors don’t believe in it. I’m allergic to most things (NSAIDS and the like) so they tell me to take Tylenol. I won’t because that’s like shooting a pea at a freight train, and my liver is in bad shape as it is. So I suffer, yes, suffer. I meditate or if bad enough, cry. Not very scientific.

Recently I went to the ER with what I thought was a stroke. The ER doctor said it was a TIA. The CT scan showed a small lesion. I was thrown through a battery of many other tests including a full drug screening (without my knowledge I might add). My doctor came in my room and told me that the tests showed nothing, so therefore nothing was wrong. We needed to discuss seeing someone in mental health, that I was probably depressed and didn’t know it and it was manifesting itself. WHAT???? (pissed off yup..I sure was) Ok, so I played her game. Went to psychologist. Not depressed, pissed…and pain management.

Today is a GOOD day. I saw my neurologist. He finally for the first time gave me the answers I have been looking for. I didn’t have a stroke or seizures. Hemiplegic Migraines! Rare, but he confirmed it to me.

I AM NOT CRAZY.

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Comments

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  • Stephen Rodrigues
    4 years ago

    No matter how you look at it all pain should have a cause so all pain should go away or have a set of treatments. IMO, if the pain does not go away by itself it needs some type of “human intervention.” The intervention depend on the cause, a scalpel for some cancers or a hot appendix. A case to brace a broken bone. Plain old father time for a contusion or dislocations.

    The most common longterm pain problems I see are headache, migraines, trigeminal neuralgia, back pain or Fibromyalgia even to the pin tack-like pain in the feet of a diabetic. ALL require help from a helper or therapist. Logic should dictate which “intervention treatment” to use. So even with these invisible chronic or longterm pain problems, a provider along with the patient can customize a recipe.

    Old-school doctors in the 50-60s, treated pain because they had to as they should. Back then, those old school doctors had many options available on the table to treat this “extra pain.” They were free to try and see what worked and after a few decades of experimentation, they uncovered the most profound therapy known to the human body. The had safe, nontoxic, holistic options. These options had no downtime, left no scars, needed no anesthesia, needed no open surgeries or joint replacements. These options were repeatable and almost guaranteed to work. The guarantee comes from how the therapy ignites Mother Nature’s awesome power.

    Today we can group all the these treatment options under the Traditional/CAM umbrella of Myofascial Pain and Dysfunctions. These treatments are called with Myofascial Release Therapies. Please visualize all these therapies on a spectrum with the idea “whole person, whole body, whole life = Holistic”; Self care with Wellness, magnesium supplementation, simple stretching, yoga, massage, traction or inversions, Rolfing, Active Tissue Release, John F. Barnes Myofascial Unwinding and Chiropractic adjustments.

    If needed, therapy must be stepped-up to Acupuncture, Myofascial Acupuncture and all other various types, dry needling and Gunn-Intramuscular Stimulation. The most aggressive of the group are Travell/Simon hypodermic needling and various other Bio/Prolo/Neural hypodermic injections.

    Notice that all of these old school options are in the world of Complementary and Alternative Medicine(CAMs), which was deemed “worthless” in the 90’s and stripped off the books. As a result of this “Hatfield–McCoy feuding,” you will have to go outside of Conventional Medicine into the world of CAMs. Since this feuding, we have an epidemic of long term pain that is forcing the “re-marriage” of the two families. This may take a decade or longer! So while the Revenuers, Profiteers, Elite Doctors, Regulators and the AMA fight it out, you will have to do this on your own plus pay out of pocket.

    Warning: Once should not allow the surgical removal of an invisible pain problem. This is illogical and will possible be an epic failure. Therapy is safe, non toxic and ultimately the logical choice.

  • MigraineSal
    4 years ago

    I am so sorry to hear what a terrible time you had to suffer at a very vulnerable time Harriette . . . unempathetic healthcare practitioners such as the one you encountered need to be taken to task, especially when patients are given a formal diagnosis which is NOT depression.

    I have not been diagnosed with Hemiplegic Migraines but I did end up in the ED and was admitted / undertook tests to rule out a stroke. The service I received, although not as heartless as yours, was very poor as I was left to wait 18 hours for the results of a head CT scan, which obviously intensified the pain and anxiety I was suffering. I was referred to a leading edge Neurologist who after a head and resulting neck CT / migraine diaries etc confirmed that I suffer with migraines, which are triggered by my neck condition. I was put on Topimirate which really helped and then we had to increase the dosage when the numbness / sensitivity in my skull became so bad I struggled to lay on my pillow but luckily after 3 months I managed to reduce the dosage again. I do regularly get the facial numbness ( always left sided and I have it as I am typing ) / skull sensitivity which I have found to be more of a postdrone type problem than traditional type migraine of late but knowing that it is migraine related has stopped me worrying. My GP put me on daily aspirin to reduce the risk of a stroke as from research I have found that you can be more prone to have a stroke after a migraine attack like the one that put me in the ED and I also know that I should not be blaze when I get the same symptoms if they intensify and last too long.

    I have to agree with Stephen that self care is critical . . . mindfulness / meditation and the pain management course and associated treatments from it really have given me to tools for a coping strategy . . . never thought I would be able to ” zone ” out of the pain . . . even if only for the short time I am practicing one of the techniques I have learnt !

    Pleased to hear that the day you saw your Neurologist was a GOOD DAY and I really hope that he can give you a treatment plan to bring more good day your way . . . getting a diagnosis, or even a formal clinician confirm that you do actually have a neurological, rather than psychological disorder will do wonders for your health and well being !

  • Stephen Rodrigues
    4 years ago

    Healthcare is the crazy one.
    I’ve been in medicine for 30 yrs and have treated hundreds of patients with various types of headaches. I have stumbled on a few bits of vital data that will help you to “see” pain differently. Hopefully this will help those who wish to understand why stubborn headaches are still an issue in the world of high-tech magic of medicine.

    Your headache is a pain, so you must deconstruct what pain is and is not. Your headache fits into a category of what I call “long-term pain.” This category of pain which does not have a structural form like that of a cancer. It does not show up with high technology or in the blood. It should not be managed like that of a tumor or aneurysm. It is not logical to try to surgically fix this pain. It is not easily medicated away.

    Long-term pain is embedded in the muscles, tendons, ligaments and bursae or myofascial tissues, formally called Myofascial Pain and Dysfunction(MFP&D)

    Facts:
    Pain is an invisible energy source deep inside your soul, so it can not be easily verified. So society can easily discount your pain and suffering. You oral testimony carries less weight that a scan or specialist or blood test, so called forensic evidence. Your voice is worth less than the doctors or the technology = you become worthless. Your testimony will not hold up in court because your word is easily discounted.

    MFP&D is invisible to the technology so that nothing can be verified.
    MFP&D is not recognized by Conventional Medicine so it’s not considered important enough to teach, study or even treat. So it is up to you to ask and research.
    MFP&D, IMO, should be treated like it was going to kill you or it will cause you to want to die.
    MFP&D should be considered in all pain cases, if it has lasted longer than 6 months without resolution or completely managed.
    MFP&D can masquerade as the pain of cancer, tumors, infections, rheumatologic disease or anything else, BUT nothing shows on all the test. The standard treatments will falter too.

    In MFP&D scan and test are ineffective or pointless because they do not point the doctors in the proper direction. Actually the cause everyone to chase their tails running in circles. So, in essence MRIs, X-rays and CTs can not detect this type of pain. This means words like DJD, bone-on-bone, disc spaces, torn ligaments, bone spurs and worn cartilage are NOT legitimate diagnosis for the long-term pain. So these “words” should not be used to take someone to surgery.

    GOOD: (treatments are safe and non-toxic)
    Self care is critical with wellness programs, sleep hygiene, stress management, stretching, Reiki, yoga, Pilates and massage.

    BAD: (cost and further danger)
    MFP&D treatment costs are out of pocket due to the way insurance co have dominated the world.
    MFP&D can devolve into a even more complex pain syndrome which is like “hellfired and brimstone.” This pain can change the molecular structure of the chromosomes and mitochondria of muscle cells. So the cellular milieu can become more inhospitable for the intracellular structures to recover. It can grown and metastasis over the body. I have a pet name for this pain, “Pain Cancer,” so I advocate for early and aggressive treatments.

  • Katie M. Golden moderator
    4 years ago

    Harriette,
    YOU ARE NOT CRAZY!! I bet it’s a relief to finally have a diagnosis. I’m sure you wish you had it years ago. Any type of invisible illness is more likely to be scrutinized by doctors. Too many of us are written off as depressed by doctors because they don’t have the proper Migraine training. The ER is especially hard.

    Now that you have a diagnosis, had your doctor implemented a new treatment plan for you? It doesn’t sound like you’ve been taking abortives, but just so you know, triptans and DHE are not recommended for hemiplegic Migraines.

    If you haven’t already done some research on your condition, here’s a link to a lot of information on the topic:
    http://migraine.com/?s=hemiplegic&submit=Go

    Wishing you the best in health!
    -Katie
    Migraine.com Moderator

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