Migraine Help From Headache Neurologist

Last year I was taking an Uber (taxi service) to an appointment and, thankfully, the car wasn’t smelly with cleaning products or dangling air fresheners, but the driver had the radio on and I’ve found background noise difficult since I got sick. I asked him if he would mind turning it down because I had a migraine, which wasn’t exactly true in that moment, but I do get migraines and that’s usually a good excuse for the taxi conversation about scents and noise and why you have your sunglasses on and the window down when it’s gloomy and raining. Turns out, this man had to leave his 9 to 5 job because of crippling migraines and was really suffering until he saw a local neurologist. He said he was having a hard time with migraine meds and she put him on this mitochondrial supplement and a natural regimen that helped tremendously (my ears perked up at a random stranger talking about mitochondrial deficits causing migraines, so I bought the supplement right away, but haven’t gotten around to taking it in the last eight months). Of course, I wrote the specialist’s info down and, when I saw my therapist, I mentioned this doctor to him (my therapist sees lots of people with complex illnesses like mine and has a network of good doctors that he recommends based on feedback from patients). “Oh yes, I’ve heard great things about Dr. Murinova,” said my therapist, so that sealed the deal, I wanted to see her. “But she stopped taking new patients.” Somehow, though, I managed to slip in and get an appointment and, it was true, when I tried to reschedule it, she had nothing else open for the rest of the year, so I felt fortunate (and kept the appointment).

There are some not-so-glowing online reviews of Dr. M, but most seem to center on her brusque demeanor. She’s Eastern European and has that sort of no nonsense approach, which doesn’t bother me at all. I quite like it, in fact. At one point, I told her it would be really difficult to wake up early enough to see the morning sun and she looked at me hard and said, “Do you want to get better or not?” Gulp. Yes, I want to get better! She said there was no point in eating good food and enough protein if you aren’t getting up in the morning because the blue light signals the pineal gland to convert protein to serotonin and melatonin (see her handout below). Her bluntness was effective. I haven’t managed to change my sleep schedule, but I certainly started taking it more seriously.
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imageShe diagnosed me with: “Chronic intractable migraine, with status migrainosus and occipital neuralgia.” She also gave me a physical exam and then diagnosed me with fibromyalgia before we’d even talked about my primary illness. Believe it or not, that was the first proper hands-on work-up I’ve had for fibromyalgia since being sick — even during those early years of excruciating body pain. She said migraines are tied to mitochondrial insufficiency, IBS, fibromyalgia etc. and that low available energy kicks off the trigeminal nerve alarm which causes pain. My genetic predisposition (my father has a long history of cluster headaches) coupled with central sensitization and not enough energy to power the thalamus properly = migraines. I thought she was very thorough and obviously extremely knowledgeable. I especially liked that she had a natural protocol and a medication protocol depending on patients’ needs.

Below is the plan she gave me. I can’t say it is definitely her advice that has helped (I started immunoglobulin infusions right after seeing Dr. M), but my headaches have been much better in the last six months.

  • Change my posture (shoulders back and scapula close together). She said it will feel unnatural, but bring the shoulder blades together as much as possible. I’ve been doing this.
  • Yoga might help neck issues. Haven’t tried this yet.
  • Aerobic exercise and build muscle to feed mitochondria. My goal.
  • Good nutrition and enough protein. Try ish.
  • Deep breathing, relaxation and other parasympathetic nervous system activities. I do these daily.
  • Sleep better, but wake yourself up early for outside light from 7-9am to build serotonin (that time is very important for short wave light that feeds your brain; you need it to cross the retinas, but not through a window. She felt this was non-negotiable). I haven’t managed this, of course.
  • No more Tylenol (more than one a week will perpetuate headaches). Now I only take it once a week for my immunoglobulin infusions and on the rare occasion of a bad headache.
  • Drink up to 3 cups a day of feverfew tea (she thought this was most important. She has weaned patients off migraine meds with this tea). I drink it daily.
  • Consider SAMe (200mg/day), yarrow formula, magnesium, coq10, riboflavin (I already take the last three), other B vitamins (B12 shots are a possibility for a boost).
  • A device called Cefaly, which works on the trigeminal nerve to break the feedback loop and is proven to greatly reduce migraines. $300 out of Costco in Canada.
  • Instead of Tylenol, consider low-dose Lyrica as bridge drug, not a permanent therapy.
  • Book: Chronic Pain and Fibromyalgia by Stephen Stahl.
  • The study she gave me is great reading. It also suggested acupuncture, oxygen, capsaicin and butterbur, but she didn’t specifically mention those.
  • She also gave me the following handout, which you can hopefully enlarge to read:
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Best Endocrinologist Ever.

Every time I have an appointment with my endocrinologist, I hem and haw about whether I should cancel it. It’s on the other side of town, $50 round-trip in an Uber, it only ever lasts about 20 minutes and couldn’t she just look at my thyroid lab results and email me about whether to stick with my current hormone dosages? Well, each time I go, I am so grateful for this doctor (last week I told her nurse I would walk on hot coals for Dr. B) and I vow to come straight home and write an update so I can remember everything she said. I never have managed to do this and the visit summaries hardly mention anything at all, so today I’m going to write a general update of her treatment.

I’ve seen a lot of endocrinologists in the last six years and they have all, without exception, been kind of odd, stoic and monosyllabic. Until Dr. B. She’s vibrant and engaged (after seeing her, I always mourn my lack of brain energy a little more), listens closely, talks about her ideas out loud, thinks outside of the box and is interested in conditions not typically related to the endocrine system. Imagine that: a big hospital allopathic endocrinologist taking the whole body into account!

The first time I saw her a year ago, I told her my basic story (anaphylaxis 2001-2002, vasovagal collapse 2005-2011, thyroid goiters 2009, radioiodine ablation 2010, SICK 2011), assuming she’d check my thyroid and update my prescription as per usual — and she did, but she also ordered pituitary blood tests, a Cortrosyn stimulation test (CST) (otherwise known as an ACTH stimulation test — it measures how well the adrenal glands respond to ACTH), referred me to two neurologists — one that specialises in headaches and one that specialises in dysautonomia — and said we would consider placing a continuous glucose monitoring device to assess the drops in my blood sugar (good news is, my blood sugar crashes got much better, possibly because I am eating all foods again and have put on weight). No other endocrinologist had ever suggested any of these things.

I was dreading the CST because of my reactivity and intravenous injections of anything don’t allow me to start low and slow, but it was fine. I did my research beforehand (yes, they were they only using 1mcg of Cortrosyn; no, I didn’t need to fast; no, it didn’t need to be timed according to the follicular phase of my menstrual cycle; no, I didn’t need to be off bioidentical hormones; and, yes, my husband could be with me), so I felt comfortable about the procedure and the results were normal.

The pituitary testing showed low LH (luteinizing hormone), DHEA and IGF-1. Because of the latter, at our next appointment Dr. B ordered a pituitary MRI to “leave no stone unturned” (LOVE her). The MRI was normal, but she emphasised that it was less reliable because of my unwillingness to use contrast (I didn’t think the risks of a reaction outweighed the benefits of a better MRI — and she was ok with that). She also gave me a prescription for Florinef to see if it would help with my hypotension (blood pressure was 80/60 at this appointment). I trialed it for a month (starting at 0.0125mg (!!), working up to 0.1mg) and thought it might be increasing my headaches (but not my blood pressure, of course), so I stopped, but it’s still on my list to retry.

My thyroid levels have consistently been tanked for the last 6 years and at every appointment Dr. B would tweak my meds. I’ve gone from 50mcg/day of levothyroxine to 100 to 125 and from 5mcg/liothyronine to 10 and — this is exciting — when I told her my naturopath suggested much higher T3 and lower T4, Dr. B said, “I’m totally open to that, let’s try it.” 😮 Typically allopathic endocrinologists and NDs do not see eye to eye on treatment and optimal thyroid levels and often one doctor will be resistant to another doctor’s suggestions, especially when the suggestion comes from someone who isn’t a specialist. Dr. B has no ego getting in the way. So, we increased my T3 to 15mcg twice/day and lowered T4 to 100mcg. I really don’t know if it has helped, but she seems more satisfied with my thyroid levels. She told me to watch out for tremors, heart palpitations and insomnia, but they are all within my normal constellation of symptoms, so who knows (although, as I’m typing this, I realise that my quite-vicious nightly palpitations haven’t happened in a while– maybe weeks). She diagnosed me with “euthyroid sick syndrome” which essentially means your thyroid will stay sick until the underlying chronic illness gets better.

I saw a headache neurologist and a dysautonomia specialist (more on both of those in separate posts), but neither of them were the ones to which Dr. B referred me. And — another reason to love her — she had no problem with that and was still interested in what they had to say. Even better, when I told her the dysautonomia specialist didn’t have much to offer and essentially told me just to make sure I don’t decondition any further, Dr. B raised her eyebrows in surprise and kind of dismissed this, still interested in helping me fix this piece of the puzzle (those of you that haven’t done the doctor rounds might not realise that almost all of them tell you to simply exercise more (or gain/lose weight) (or take antidepressants), so I expected Dr. B to take the specialist’s assessment as bible and agree that I was just deconditioned). She suggested I do a growth hormone challenge (it involves a 17-hour fast, an 8am check-in and a 5-hour test where they give intravenous glucagon and then measure human growth hormone (HGH) response through blood draws) and said the worst side effect she’d seen was vomiting. I wanted to vomit at the thought of getting to a hospital at 8 in the morning. I went home to do some research; that was in July of last year.

When I saw her again at the end of September, I hadn’t done the HGH challenge and she didn’t give me a hard time at all. Three months after that appointment I still hadn’t found the nerve, so I emailed her a long message about my glucagon fears (those of you with mast cell/anaphylaxis/medication sensitivity issues can read my email* below for the reasons it gave me pause) which any other specialist would either not answer or reply that I should come in for an appointment to discuss. Instead, she sent me a very thoughtful, validating reply (not “For fuck sake, stop being such a scaredy-cat and do the bloody test since I’m the one doctor who is investigating all these things!”) and offered an alternative to glucagon — an insulin challenge test — which I agreed to … and then never did. They give you intravenous insulin, drop your blood sugar to 40 and then test HGH. I told her I was more comfortable with the devil I knew (hypoglycemia) then the one I didn’t. But, it turns out I’m not really comfortable with voluntarily meeting any devil. I’ve had my blood sugar drop into the 40s. It was absolutely horrific — one of the worst feelings I’ve ever felt. And, although they give you intravenous glucose right afterwards, I still couldn’t bring myself to do this test and subject myself to the crash when I thought they probably wouldn’t find anything.

So, I waited until my appointment this month — 8 months after she first wanted to investigate this avenue — and told her of my fears about the insulin challenge test as well. I expected her to just give up, to say there’s probably nothing wrong there, anyway, but she didn’t. She said there was an additional reason to do the insulin challenge (other than for HGH output) and that was that it can pick up a hypothalamus issue that the glucagon stimulation test can’t. Ok, I can get on board since it’s a two-fer. However, in another display of out-of-the-box-ness and medical generosity, she suggested I just try HGH injections without doing the challenge test. She said she had two other patients with the dyautonomia-mast cell-EDS trifecta (more on my EDS diagnosis at another time) and, even though neither one flunked the stimulation test, they tried HGH and had really good results. A friend of my sister-in-law’s had a lot of success with HGH and it has always been in the back of my head as something to try when I win the lotto. I read it cost thousands of dollars, but Dr. B’s prescription is “only” $138/month, so I’m on board. If/when I get the nerve, I can stop the HGH for a week and do the challenge test and, if I fail, insurance will pay for my prescription. An added bonus is my nurse who comes to my home every week (to give me intravenous fluids with my immunoglobulin infusions) can show me how to subcutaneously inject the HGH and I don’t need to go across town for a tutorial appointment.

Gratitude for good doctors! Wish me luck with the HGH.

January 1st, 2014

This day last year, I said 2012 was the worst year of my life. I also stated emphatically that 2013 would look very different. And it did. But not in a good way. In 2012, I was still working for 5 months of the year. I got to spend 11 days with my soul sister, E., when she visited from Dublin. I was able to run errands, go to the dog park, talk on the phone, and see friends for 9 months of 2012. Unfortunately, that all went away. Now, I can safely say 2013 was the worst year of my life.

The details are too difficult and depressing to describe or dwell on, but neither will I paint a silver lining around this dark life. It has been unspeakably difficult, what didn’t kill me did not make me stronger, and I’m not grateful for the lessons I have learned since being sick. I am a sadder, scared-er, weaker, lonelier person and I’d give anything to go back to the ignorance and energy of healthier days.

However, I am much more aware of things I used to take for granted and I am more thankful than I’ve ever been: For every bird, tree, and arc of sunshine. For every single dollar that I saved before the abrupt halt of income. For every time a snort of laughter escapes me; every day that my legs hold me; and every book, film, song that distracts me. For every time someone vents to me about their life or asks for my opinion or feels they can use my muscle-wasted shoulder to cry on. For every time someone braves the thin ice of chronic illness to ask what life is like for us or see how I am feeling or offer to help, knowing full well they risk breaking through to the deep despair beneath.

Most of all, I am thankful for my family. My father, mother, brothers, sister, in-laws, friends, husband and dogs. (Oh, husband and dogs! I am alive today because of you! And I fight for tomorrow because of you.) Each day that they are healthy brings me solace and I experience stark, unfettered joy at every festive Facebook photo of holiday parties, restaurant dinners and energy-filled activities. So, keep singing, fishing, working, exercising and traveling, everyone! And I will live vicariously… Just, please, promise me that you do it with an eyes-wide-open acknowledgement of how short and fragile our journey is on this earth.

Here is my 2013 wrap up:

January: Was sorely disappointed at the Chronic Fatigue Clinic; saw first private doctor, tried cranio-sacral therapy.
February: Not much except stool and saliva tests.
March: Was sorely disappointed at second rheumatologist visit; saw second sleep doctor; had the 4 best days between September, 2012 and now; Zyrtec trial.
April: Got teeth cleaned; started seeing wonderful physical therapist; started the awful process of getting an oral appliance for sleep apnea which still hasn’t happened, almost 9 months later; Seriphos trial; started Chinese herbs.
May: New nephew R. was born; saw dermatologist; phophatidylserine trial; Nasonex trial; tried Tizanidine; turned 40; dear friend E.S. died far too young.
June: My mother and D. visited; saw cardiologist; tried valarian; started Unisom; Gabapentin trial; added rice back to my diet.
July: My father visited; stopped weekly therapy; stopped phone calls for the most part; stopped Chinese herbs.
August: Stopped eating soy, citrus; added lentils, garbanzo beans; tried Trazodone; stopped all vitamins and supplements; J. and Z. gave me a scooter: my ticket to some freedom.
September: My mother and brother, T. visited; abdominal pain started; husband’s family visited; celebrated 15th anniversary.
October: Brother A. visited; saw ENT doctor; saw “environmental” doctor; saw neurologist; had bad reaction to Unisom; tried Xanax; Zetonna trial; had hellish 2-week repercussions to autonomic testing.
November: Tried low-histamine diet for 5 weeks; methylation pathway, mycotoxin and adrenal tests; started vitamins again and Metagenics shakes; tried iv fluids and caused anaphylactoid reaction; another zyrtec trial; saw allergist; steps per day decreased below 700 and haven’t come back up.
December: New nephew G. was born; Christmas with sister; saw ophthalmologist; started juicing; tried Ativan.

Like last year, there were births, deaths, doctors, drugs, symptoms, setbacks and disappointments. And, like last year, what I see when I look at this is how lucky I am to have family that would travel across the city, country or ocean to visit me in my home and offer love and support, without judgement.

Happy new year to you all. 2014, please look different than 2013 ~ only in a good way.

Hubby sweeping in the new year, a family tradition. :)

Hubby sweeping in the new year, a family tradition. 🙂

Remember the little moments,

like this,

that were good.

Cheers.

~James Gandolfini in The Sopranos R.I.P.