October 28, 2013 at 9:53 pm #602
My boyfriend is in the middle of a nasty flare up. What do I do?
Here’s what we’ve done so far:
-low FODMAP, gluten free, dairy free, soy free diet which has helped stop his violent muscle spasms. He still probably has smaller spasms but nothing like before
-he’s taken half a hydrocodone (I think he has the 5mg ones, so he’s taken 2.5mg)
-He’s taken 1500mg of tryptophan
-He’s taken 750mg of GABA (supplement we use instead of gabapentin THAT STUFF IS EVIL)
-He’s smoked about half a g of cannabis (it is usually very effective but not tonight)
-He’s taken a clonozepam, a propranolol, zantac+zyrtec
His dad stressed him out quite a bit today, and his mom stressed him out massively on Friday.
He was sitting up, but now he’s lying on the floor and that appears to be more comfortable for him at the moment.
His temperature has been in the 96-97 range the last two weeks. We both have a cold- on the worst day, his lips were devoid of color and he had a body temp of 94.6. That happened a week ago.
Well, he appears to be resting comfortably on the floor for now.
And so for now, we wait for his next appointment, his next meaningless diagnosis.
His family physician in Indy is willing to prescribe him anything provided that it makes sense (we have some sort of support, via research or whatever,).
Diamox is already on the list. What else should we pursue?
Also, I’ve emailed Dr. Diana and we exchanged a few emails regarding my guy. (It’s Eliza here :3)November 6, 2013 at 9:56 pm #4571
Hi Eliza, I’m so sorry Jordan is doing so poorly… His muscle spasms *really* worry me. A “flare” can mean different things to different people. Can you be more specific about his symptoms? Although I can’t diagnose or treat Jordan (certainly not over the internet), I think it is worth asking if he is taking LOTS of magnesium? Did you see my video about magnesium? Many of us are low in magnesium INSIDE our cells, so even if the blood test shows normal levels, we still need to supplement. And if you watch the video (or check under Articles and Handouts) it will tell you all of the HORRIBLE things low magnesium levels do to us. And the floor is often our friend. 😉December 2, 2013 at 11:36 pm #4636
Hi Dr. Diana,
Oh God, where to begin. He is at least alive, and capable of small movements and talking. When he removed allergens from his diet, his muscle spasms decreased significantly. Since I am not with him right now, I can’t report exactly how bad they are, nor can he tell me since his memory and his mental functions in general haven’t been so good. He’s been doing hot magnesium baths daily (should he take more magnesium?), and the floor helps him keep his hips in place.
His knee is messed up real bad and his folks won’t arrange for an appointment with his orthopedic doctor, despite the fact that he’s been complaining about this for a whole week. We suspect it’s a posterolateral knee injury of sorts, since his calf is rotating far beyond what it should. For now, we will try to keep it in a cast.
In a few weeks, I’ll have to rescue him from his household, where they neglect him. They forget to feed him, and he’s already 117lbs at a little over 6 feet tall. His heart rate is still very fast, his headaches are severe, he can barely walk (he shouldn’t be walking with the PL knee injury), yet his mother forces him to walk up and down a flight of stairs to get his food. He fell on the stairs once, and his mother, father and sister did not leave their dinner to help him. They rarely speak to him, they treat his room like a storage unit- as if he did not exist.
As soon as he hears back from his orthopedic doctor, he’s leaving, and I’m taking him back to New Orleans to take care of him.
And this blows my mind. I’m a full time college student (only 19 years old, to boot), with a part time job, with no parents, and yet I can take care of him better.
We have a plan as to what he needs:
-gain weight (target weight of at least 135-140lbs)
His family physician was afraid to prescribe him diamox because his weight was so low, that the doctor feared that any adverse reaction, even the dehydration, could send him into shock or a similar such shitty situation.
We can easily purchase this online or my brother can make a trip to south america, or see you in Dallas, but how much? How frequently?
-mast cell stabilizer
If it came down to it, we could buy this online as well. But again, how much, and how frequently? I hear of sodium cromolyn, but what form of it? There’s the OTC nasal spray according to wikipedia. Is that good? Is the inhaler better?
We will continue his allergen free diet (no processed meat, no eggs, no dairy, no soy), with an emphasis on ground meats (easier on his tummy) and coconut oil (the med. chain fatty acids are also much easier on his tummy). He cycles his calories in a way. Some days he can eat nearly 4000 cal, and the next day, barely 1500. (He gained 5 pounds quickly this way, but quickly lost that 5 when his mother forgot to get him food, and he was left with moldy bacon and fruits). We will continue his use of cannabis since it helps his pain more than vicodin or tramadol, without upsetting his stomach (in fact it helps with his stomach motility).
He has a neck brace, but he wants a better one. The one he has doesn’t seem to support his head near enough. Do you know of a good one? (If only he could get a brace for every joint in his body- a full body suit that ensured that everything moved in the right place).
I think you understand that feeling of being overwhelmed. I just want Jordan to get better. As soon as this spring semester comes to a close (May 2014), I’d love to move to Dallas and work with you in researching EDS. I want to know all there is about keeping Jordan healthy, and keeping others afflicted with similar issues in good health as well. I’m amazed by how many people exhibit health traits so similar to EDS.December 3, 2013 at 12:44 am #4638
Heavens, Eliza, Jordan needs real face-to-face medical care. This is not something anyone, including myself, should try to diagnose and/or treat over the Internet. It sounds like Jordan has an orthopedic doctor? Then surely, he must have other doctors? Yes, weight gain is important, but ruling out causes of malabsorption are equally important – celiac disease, IBS, candida etc. Neck braces: it really is trial and error as everyone is so different. I’ve probably gone through a dozen myself. Diamox is not something to take lightly, and we need to show a reason for it. It doesn’t sound like he has been evaluated for symptoms and/or signs of intracranial hypertension? That would be needed first. As far as mast cell treatment goes, if he is showing signs and symptoms of that condition many of us get relief from antihistamines, such as Zantac and Zyrtec. We found that to be especially helpful in orthostatic intolerance. I’m not certain if he suffers from that condition, however. Should he respond positively to antihistamines, then the next step would be another mast cell stabilizer such as cromolyn or ketotifen. The oral form (tablets) are best. This is by prescription. I’m so sorry his family doesn’t understand, and is so neglectful. He is lucky to have you in his life. Keep being strong, gentle hugs…December 3, 2013 at 1:30 am #4639
Jordan is on Skype right now, so I can do some QA with him.
We’ve had neurosurgeons excitedly suggest shunts. His MRI is posted somewhere in the forums. His headaches are bad, but he isn’t seizing as bad as he used to (back in Sept-Oct2013). Most of his problems are typically on the right side, especially his arms, but it is not uncommon for his left side to be shaking as well. The shaking is not very severe now. The ophthalmologist he saw found no sign of intracranial pressure, though his MRI seems to indicate otherwise. When he has a flare up, he gets white flashes, and the white flashes increase in frequency when he takes tramadol.
His blood pressure is all over the place (on the low side as usual). We aren’t sure if the zyrtec/zantac combo was helping or if it was his change in diet that helped. Right now, the zyrtec/zantac is not as effective as it had once been. His body temperature is a little on the low side, and has yet to reach 98.6 (it’s usually lower).
He completely forgets what he is talking about in the middle of conversations, very bad ADHD, can’t think clearly, and his thoughts are racing all the time. (adrenaline)
His beta-blocker (propranalol) helps with his high heart-rate. He always has a high heart rate, but when it gets to the extremes, propranalol helps.
His nausea has been really bad recently, likely the combination of his celiac, IBS, adrenaline-dysautonomia (gastroparesis really), cervical instability, and the medication (vicodin and tramadol)
Jordan will update me as to what goes on in his flare ups nowadays.
He’s had a nasty day. His folks essentially told him that they will stop taking care of him today.December 3, 2013 at 9:31 pm #4641
Here’s some more info about me. During a flare up I get these symptoms:
Severe pain in chest and lower-back, and pain in all joints is worse.
I was having very violent muscle spasms and tics to move or make noise. Since going on a grain free, soy free, lactose and casein free, nut free low fodmap diet and taking zantac and zyrtec my spasms are only occurring in one or two limbs at a time but they still shake violently.
If I try to move a limb it spasms.
Head / Eyes
pressure and throbbing on back and front of head
Neck and shoulder and upper back pain
pressure on eyes that seems to vary throughout the day, it is painful to move my eyes to the sides most of the time
black pulsing flashes
white flashes (these seem happen more when I take tramadol)
Sensitivity to visual stimuli
Tunnel vision when crashing
heart rate increases (propranalol helps with this but I become dependent on it if I take it more than once every few days and I build up a tolerance fast)
I will feel like it is 90* in a room temperature room and then when I crash I will be freezing.
These symptoms get worse during a flare up but I have these all throughout a typical day.
Thoughts racing constantly
Unable to concentrate
Will completely forget what I was thinking / talking about
Tapping of foot
The neurologist I saw said that my spine MRI was normal and that my brain MRI was “probably normal” when I mentioned that it looked like my corpus callosum had an abnormal curvature similar to one posted on this forum.
I saw an ophthalmologist and they dilated my eyes to look inside and also checked the pressure. The ophthalmologist said it looked fine, but this was after I changed my diet and started taking zantac and zyrtec and was having a really good day, I was able to walk with braces and a cane instead of being in a wheel chair, no spasms, and no feeling of pressure on my eyes or head. My symptoms have gotten worse since then, but even though I am stuck in bed are significantly better than where I was before I changed my diet and took zyrtec + zantac. The zantac + zyrtec does seem to help very well with the OI. I have less dizziness, and lightheadedness upon standing, no longer have my vision go black upon standing, but I still have increases in heart rate and shortness of breath which seems to come and go throughout the day but I’m also stuck in bed most of the time because of my knee which has been in a lot of pain with weight on it or movement and is rotating like it has a PCL injury for a couple weeks, and about a month ago before I changed my diet and started zantac + zyrtec I would have violent muscle spasms in all my limbs and neck upon standing.
The mastocytosis society of canada website listed the signs and symptoms of mastocytosis and MCAS and I have had nearly all of them at one point or another in my life, most of those currently, and so have my siblings, cousin, and grandmother.
I have been diagnosed with celiac disease and IBS. I have vitamin D malabsorption for sure, but not sure about the rest. All my blood tests came back “normal”. I try to take daily epsom salt baths, it helps me a lot with muscle pain but it doesn’t touch the pain in my lower back which is the most sever pain I have. I am going to start taking a magnesium supplement and try to get a prescription for cromylin to see if it helps.
From the last week of September to the end of October while I was still in New Orleans I saw the head neurologist at Tulane twice, an ophthalmologist, geneticist (I already have an EDS diagnosis from Dr. Neillson at Cincinnati Children’s, but the neurologist thought this geneticist would be able to help find a diagnosis but she was clueless on EDS), a sleep doctor that only wanted to treat me for sleep apnea which he assumed I had without evidence, and was followed by a pediatrician that tried a few drugs which all failed to do any good, ropinerol and meclizine being the ones I remember off the top of my head. But my parents moved me out of my dorm and back to Indianapolis because I couldn’t keep up with school and they said they would be better able to help me if I was back at home. However since I got back here they have dismissed my symptoms and refused to help me get medical attention outside of anorexia clinics.December 5, 2013 at 7:20 pm #4642
I’m so, so sorry to hear this. As scary as it sounds, this is NOT atypical and even I scared away my doctor this week! It seems we all go through the “doctor merry-go-round” fairly regularly, actually. 🙁 We are — how did my doctor put it — “outside her comfort zone”. There is something that your doctor may not be aware of that may help, though. We can have high intracranial pressure WITHOUT papilledema (eye signs). I’m just wrapping up a study about this, in fact. Sometimes a trial with Diamox (just one pill!) can help diagnose this. Interestingly, we are also prone to developing spinal leaks, which can appear as high pressure, but are in fact due to low pressure. It can be difficult for patients and doctors to discern the difference. Special tests are sometimes needed (a myelography can help detect a spinal leak). So, even if the eye doctor didn’t see any signs, high pressure can still exist and treatment can be TREMENDOUSLY helpful. Can you search the forum for tests for B12 deficiency, too? Many of us have digestive problems (and some of us have genetic defects) leading to vitamin deficiencies with nasty consequences. These are too easy to reverse. Most of us are on supplementation or are being tested now. Hang in, my friends…
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