5 posts in this topic
Well I posted a couple of weeks ago that my doctor was looking into a possible diagnosis between seizures, narcolepsy, and migraines. I am still waiting to see how that goes.
Wednesday I had my consult with the sleep clinic which flagged me a lot for narcolepsy, which may or may not be relevant as I know these intermesh a lot with each other.
I have continued logging all of my seizure like episodes since I've noticed that they were more than just typical chills. If I knew how to link that post I would .The gist is for those who have not read it is it a chill like feeling in the back of my Neck, head and shoulders. My eyes would roll back and eye lids would flutter. Started out lasting roughly 2-3 seconds then progressed over time to 3-5 seconds. There was a cold shiver included with the eye roll and my head would snap backwards.
As time passed by symptoms slowly progressed. Some nights I would have 5 or 6 back to back, mainly if I were in a vehicle that had wind and ac sometimes none. Seems to be triggered by wind and cool/cold air. I cannot induce it nor does it happen all the time. Afterwards, I am sometimes sick or have aa headache, but I am always sleepy for the rest of the day.
I have continued to maintain awareness. In the last week or so my arms have begun to jerk upwards during these 'episodes' and shake a touch. Not long. Like I said they only last a couple of seconds.
Now...the newest thing that would freak me out if I were not on an awesome bipolar regimen that squashes my anxiety.....
Yesterday I had an epidose. The heat index was about 100 degrees and I was sitting in front of a huge fan trying to stay cool. Hair was pulled up. Next thing I knew my arms, shoulders, neck, and head tensed and jerked. My head snapped back. Eyes rolled. Lids fluttered. I can't remember if I felt the usual cold shiver or not because when my arms jerked upwards I felt a warm tingle that felt like electricity [best way I can describe it] go all the way to my finger tips of both arms. It matched perfectly. It was not painful like neuropathy, not pins and needles, just a warm electrical tingly feeling if that makes sense... I don't know how else to describe it. It started and stopped with the episode.
Does anyone have any ideas on this???
I've had migraines since I was about 6 years old. When I was 12 I was prescribed sumatriptan and I feel like it's been a miracle drug for me. However, more recently I've had migraines more frequently (once or twice a week), and sometimes the sumatriptan isn't helping as much as it used too. I went to the ER once a few months ago because I had a migraine so bad I felt like I was actually going to die. I'm prescribed the highest possible dose (100mg). I'm thinking of opting for some sort of treatment that would reduce the frequency of my migraines. I know of some of them I wanted to know if anyone has personally tried preventive treatments, and how they worked and how effective they are.
Just joined CB, seems like like a community with some respectable feedback. So,hello.
Issue at hand: Around the clock jaw tension and headaches
2x15 mg IR Adderall 1x morning // 1x late-afternoon
30 mg XR Adderall 1x with 15 mg IR in morn
2 MG Clonazepam
1 MG Xanax
The pain in my jaw is located just below my lobes, closer to my temple than my rear neck, but still the jaw.
I clench, I crack, rub, warm cloths, but still solution that ends with relief. Went to my GP and was prescribed Fioricet but have not recognized any significant relief. The only relief is on heavy benz dosages.
I'm taking Magnesium supplements and my last option it seems is the mouthguard.
Any suggestions? Experiences?
It claims it automatically adjusts your computer screen to the time of day according to your location (and it does). However after downloading it and playing with the settings, I found it has the ability for manual control so you can change it to warmer or cooler colors per your own eyes.
Most of their research and links about light (and their entire sell point) are about sleep and circadian rhythms, but I posted it here because it has helped me with eye strain and phtotosensitvity/photophobia of the computer screen and my neurological craziness.
I am extremely photosensitive during my Migraines and my Seizures have a definite Photosensitive trigger; so I was very excited to find this. I am mostly hoping for not having to pry myself away from the computer at 2AM because my brain feels electrified while seeing spots, flashing colors, and zigzags - just to lay in bed for 4 hours staring at pure blackness and nonexistent colors.
And also - it's free. So bonus.
I'd just thought I'd share my find (:
ETA If this topic needs to be moved, it won't bother me one bit. It's a link about software - specifically sold for sleep/circadian rhythm - successfully used by the poster for Temporal Lobe Weirdness (which apparently is not an actual board topic LOL) - posted in the Migraine Board.
A month ago, I began to have symptoms of lithium toxicity after eight years of relative stability. In the subsequent batch of bloodwork, my TSH was found to be too high, suggesting a dx of hypothyroidism, for which I was promptly prescribed Synthroid. My start-up side effects on Synthroid were dramatic, taking me to a manic state, with insomnia, and severe appetite suppression (lost 10 pounds in 1 week), and yielding an ecstatic plan to save the world in a series of disjointed, delusional essays. I saw my GP as I had developed a goiter, which likely resulted from the overtaxation of my thyroid. It was also discovered at that time, and confirmed with an EKG, that my heart rate was too low (which perhaps explains the unproductive fog I'd been in at work all week). My GP deemed my migraine prevention medication, a beta-blocker called Nadolol, the cause and promptly discontinued my use, which took me to a lovely place of at least one migraine a day after a relatively pain-free year. She didn't increase my Imitrex to compensate, so pain. Without proper migraine treatment, I find myself relying on over-the-counter pain medications in amounts far exceeding recommended doses, so that I can have just enough relief to fulfill a shadow of my resopnsibilities. She re-ordered a lithium level, as apparently it is known to interact with Synthroid. The critically high result came in later that Friday evening, though no one actually contacted me about it until after the weekend. Thankfully, my local laboratory allows me to see my results online, so I took myself off of the lithium, as otherwise the toxicity would have only continued to increase. The lithium had also affected my kidney function, depressing my glomerular filtration rate (GFR) to stage three chronic kidney disease levels. My psychiatrist told me I could not resume my lithium until my kidney function returned to normal, which fortunately it has. (She believes the thyroid damage is permanent, which isn't terribly worrying as Synthroid seems to be a rather effective replacement.) An ultrasound of the thyroid was inconclusive. A radiologist astutely confirmed that the gland was enlarged, which is also visible with the naked eye, that blood flow to the region was increased, which is slightly worrying as it suggests to me the possibility of increased cellular mass, and also said the result was consonant with Graves' disease, which doesn't make sense as Graves is essentially hyperthyroidism and a TSH of over 85 is most definiately indicates hypothyroidism. Some MA or other clinical support person called to say that they were in receipt of my ultrasound result but gave no indication as to what the result actually was, and I had to go to the hospital medical records department to obtain the result, as their online results system didn't seem to be working properly. It is not clear what my psychiatrist intended me to do without any mood stabilization medication. Of course I went into a deep depression. I missed several days of work. I used an antidepressant in the safety-net sort of way I've long used it, an off-label method which I will not propagate here, but which I credit with saving my life many times. Unfortunatley, it has a rather ugly rebound which doesn't aid overall stability. My psychiatrist had sent in standing orders for labwork, which apparently I can avail myself of at will. So once I'd obtained results that my renal function had returned to normal--textbook normal, which is excellent as there doesn't seem to be any lasting kidney damage, I restarted myself on lithium at the lowest possible dose. After several days on that dose, I had myself retested, and as kidney function remained normal, I have gone to the second lowest possible dose and will retest before my doctor's appointment next week. Meanwhile, I have heard from neither my GP's nor my psychiatrist's offices regarding either lab results or treatment plans. ("How's your mood been with the lithium withdrawal? Let's talk about how we're going to deal with your bipolar symptoms while you're not on your mood stabilizer." "We realize that in taking your migraine prevention medication away, you're probably going to experience a rebound in migraines. Let's talk about a healthy way to manage that pain." "Way to go! Your kidney function is normal. You can now resume lithium at dosage x.")
What am I paying them for?! What do patients do who aren't able to what I'm doing? It does not seem an extravagant expectation that they should be able to manage care in the areas for which they have been trained. And what, exactly, has that training prepared them for? Lobbing anti-psychotics and mood stabilizers like grenades at our symptoms until something hits the mark, but in rapid fire succession, so that start-up and withdrawal effects overlap, and resulting changes in symptoms are overdetermined, and thus it isn't entirely clear whether a positive result is brought about by medication A, medication B, or some interaction of the two. I lost a job during a period of such medieval science. To them we may just be charts, problems to be solved, but whether I am stable determines whether I can continue my education this Fall, whether I will be able to keep the job which provides my healthcare and funds my education.
My goal, above all else, with my mental illness treatment, is to regain the highest level of function possible, so that my life can be more than suicide defense and a perpetual need for pharmaceutical smoke and mirrors to mask my symptoms, not just in public, but around those most near and dear as well. I want to use my experience of pain and powerlessness to ameliorate and eliminate suffering in others. But to do this, I need my brain. I find it rather absurd that I should be expected to repair my own diseased organ with that same diseased organ, but so it seems.