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cataplexy association with MCAS??

Discussion in 'Mast Cell Disorders/Mastocytosis' started by charlie1, Nov 8, 2013.

  1. charlie1

    charlie1

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    Hi, I'm looking for some help - I do not have a definitive diagnosis of MCAS but will be seeing an immunologist in the new year who has experience with it. I have many of the symptoms noted to be associated with MCAS but with such a myriad of symptoms being possible, I've yet to find any relation (in my research) between cataplexy and MCAS.

    My issue is with severe, fairly sudden body muscle weakness and extreme cognitive impairment....much worse than my PEM episodes. Seizure and Addisons disease has been ruled out but I do have POTS and vaso vagal syncope. Usually cataplexy information includes mention of accompanying narcolepsy but I cannot sleep in the day so doubt that I have that. I have alot of other strange symptoms as well.
    Episodes resembling anaphylaxis and extreme reactions to bug bites are new to the list but more concerning even than that is that the cataplexy is increasing.Sometimes it is from PEM that progresses in intensity, other times I can be doing nothing in particular ie. watching TV or reading. My entire body just suddenly relaxes and if I don't make it to the couch in time, I'll fall to the ground still conscious but totally unable to respond to queries. (weird b/c as of late, the opposite happens with my feet muscles in bed- they contract so much that my toes get bent out of position).

    Does anyone experience or know much about cataplexy episodes? I'd like to know more about this before seeing the specialist in January b/c its possible this has nothing to do with MCAS and I'm barking up the wrong tree.
    Charlie
     
  2. Sparrowhawk

    Sparrowhawk Senior Member

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    Complete shot in the dark but do you have amalgam fillings or any issues with mercury? I ask because a neighbor of ours had these "falling down" episodes kind of like you are describing. She could think but she couldn't move or talk. When the doc looked in her mouth she had mercury tatooing all over the roof of her mouth. Some of her fillings had degraded (she's 48) over time and the mercury was releasing. She had some serious environmental dentistry done and she's not had any episodes since then.
     
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  3. August59

    August59 Daughters High School Graduation

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    Have you been tested for Narcolepsy which Cataplexy is most often associated with?
     
    charlie1 likes this.
  4. camas

    camas Senior Member

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    That sounds pretty scary. I searched the facebook masto groups and found no references to cataplexy. Muscle weakness and brain fog are not unusual in MCAS though, and anaphylaxis can manifest in different ways -- like overwhelming sleepiness or weakness. Has anyone checked your blood pressure during these episodes? Maybe that could give some kind of clue? I hope the specialist you see in January can sort things out for you.
     
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  5. charlie1

    charlie1

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    Thanks for your replies.
    @Sparrowhawk - I do have amalgam fillings but because my symptoms can be so severe, having them removed (much controversy surrounding that) is out of the question, at this point anyway. Plus, the effectiveness of local freezing (often double/triple the amount) is hit and miss with me...many painful times spent at the dentist bc of that.

    @August 59 - I do believe I have a sleep disorder of some type but from what I've read, most sleep study clinics (my local cliniv for example) can dx apnea, but not other causes of sleep disturbance disorders. My research has found nothing on 'Cataplexy without Narcolepsy' and I doubt I have narcolepsy so I believe its some type of fall out of my disorder. It's strange - I am physically tired most days, but not 'sleepy', although I have a hard time sleeping at night without sleep aids.

    @camas - I have chronic low blood pressure as well as often having bradycardia. Sometimes my blood pressure is extra low during these episodes but there are times it is my normal low. I don't get high blood pressure, even during my episodes but having it rise 45 pts was what clinched the POTS dx thru TTT'ng.
    Thank-you for checking your resources for me.

    I was hoping someone could shed light on this worrisome issue by sharing their own similar experience and treatment. Anyone out there that experiences anything remotely similar ????? Anyone, ...
     
  6. camas

    camas Senior Member

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    I was thinking that if your blood pressure dropped dramatically during these episodes that it might point to anaphylaxis. I don't know.

    I do get what I call "crushing attacks" where I feel tremendous pressure all over my body and can barely move, although I can think and speak okay -- I just don't feel like it because I'm so overwhelmed by the pressure. When they're over I'm left weak and exhausted. They feel neurological, but, like you, seizures were ruled out and my doctors were at a loss to explain them.

    Years ago I discovered that taking half a temazepam would bring me out of them. After I started taking klonopin daily about six years ago, they also decreased. In the last year, since I've also been taking an antihistamine daily and following a low histamine diet, I've had maybe one or two mild attacks. So I'm guessing that these attacks are mast cell or histamine related?

    I don't know if that's anything like what you are experiencing, but I understand how scary these kind of episodes can be.
     
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  7. charlie1

    charlie1

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    Thank-you camas. Yes, they can be terrifying. I will be aware of what's happening but am unable to speak or move once the episode hits me. It will look like I've fainted, but I haven't because I'm conscious. When it first started happening, it was early in my illness. At first the episodes almost only happened after/during walking in the yard on what would have been an extra good day for me if I got outside. (mostly house bound at that time). When they first occurred, I didn't know what was happening and would just feel very strange and then suddenly fall. Experience eventually taught me the warning signs and that trouble was coming fast. The episodes can last anywhere from 5-20 minutes followed by being 'out of it' for hours.
    I try to get to a couch as soon as the warnings come. Typically, I find myself struggling to get to a couch with my body leaning/half falling while I shuffle my feet soooo soooo slowly (as if I had Parkinsons). I know I need to move fast but I swear, I cannot lift my feet when this happens. The crazy gait change is probably one of the most terrifying elements of all this b/c I feel my body shutting down with each shuffle movement.
    I used to call this a crash or PEM since seeing those terms on various threads. But in time the episodes started happening regardless of my energy usage. It might happen immediately after eating or just watching TV during times of being sedentary for days which doesn't sound PEM anymore. Yet there are other times it might happen if I did expend too much energy such as using the stairs although other days I can be on an outing without any issues. I find it very difficult to figure this out.
    What I do know is mornings are always worse for me followed by afternoon with usually my evenings being my best time of day for some reason. Another sure thing is I always get the a strange sensation in my legs, increased head pressure, sudden tinnitus, very heavy eyelids and usually my speech will be slurred leading into an episode. If any of those symptoms start happening, I've been warned that I need to get myself to a couch NOW.
    Interesting that you mention temazapam and klonopin. Taking the .5 mg of lorazapam that was prescribed when doctors thought these were seizures has sometimes averted an episode. Once an episode hits though, lorazapam doesn't usually help. Benzo's being mast cell stabilizers has me thinking this may indeed be a MCAS related issue but unfortunately I can't find anything in particular about cataplexy. I have read the Afrin paper that you once sent me so thanks for that. There was no mention of cataplexy though so I should read more on anaphylaxis in particular. Can you direct me to some good info on that?

    So sorry this was so long. Just needed to talk. Thanks for listening. I don't feel so alone now.
     
  8. camas

    camas Senior Member

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    Well, you'll never be alone on this site. :) Sorry for all you are going through. I know how rough it can be. If everything neurological has been ruled out (M.S., etc.), I can see why you are leaning towards MCAS.

    I don't have any particular source of information on anaphylaxis, but you might check the websites of both the Canadian and U.S. Mastocytosis Societies. They are pretty good resources.

    From what I've read on masto boards the symptoms of anaphylaxis can range widely. Some people go into a stupor or pass out, others get angry and even aggressive, I assume because their bodies are pumping so much adrenaline. In the past I've had pretty much classic anaphylaxis -- swollen tongue and throat, low blood pressure, and almost passing out. Fortunately I had a doctor who was on top of things, so I had epi-pens on hand. The drug most everyone seems to use first is Benadryl, sometimes in large doses before they resort to an epi-pen and going to the emergency room.

    If the lorazepam has helped thwart your attacks and you tolerate it okay, I wonder if your doctor might prescribe it for daily usage as a preventative? You know Dr. Afrin's approach is usually a benzo plus an H1 and H2 blocker. I think lorazepam was one of benzos he uses. I'm glad you get to see a MCAS specialist in January. I only wish it were sooner!
     
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  9. Crux

    Crux Senior Member

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    Hi charlie1;

    My best guess is B12 deficiency, and probably other conditions.

    Even though I haven't found a link between cataplexy and B12 def., there can be leg weakness, gait disturbance, ataxia, and collapse.

    I remember before I began to have numbness and tingling, paresthesias associated with B12 def., I was losing control of my limbs on occasion. My right leg would give out, and I would fall sometimes.

    Speech problems and tinnitus can also be a manifestation of B12 deficiency.

    Here's a link to a paper that puts some case reports of B12 deficiency into a chart form. Maybe some of these symptoms will be familiar.

    http://www.jscimedcentral.com/Nutrition/Articles/nutrition-1-1008.pdf
     
  10. ahmo

    ahmo Senior Member

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  11. charlie1

    charlie1

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    Thanks Crux for sharing your experience and also for the article. It supports what I've heard regarding at times, high B12 levels can actually mean B12 deficiency .
    In 2010 I was beginning to feel ill/weak and my B12 level was quite high @ 734 pmol/L so i was told to go off supplements. Two years later my health had really deteriorated and when B12 was checked again, it was 1097 although I had discontinued the supplementation during those 2 yrs. By now I was showing signs of cortisol / adrenal /thyroid issues but blood tests showed normal ranges (thyroid levels are controversial). I was told to go on a strict gluten free diet.
    I returned to the doctor 3 months later with much worse symptoms which by now included the cataplexy and POTS symptoms (have since been dx with POTS). My B12 had dropped to 437 (hard to believe gluten free diet would accomplish that? perhaps co-incidence?) but I was feeling much worse. Mestinon has helped somewhat
    with the POTS although I still have dysautonomia issues but have found nothing to help with the cataplexy.
    Although it's possible my symptoms are related to B12 deficiency (I will ask doctor for testing), there is something else going on as well that docs can't seem to figure out :( There are times (often) that the act of eating in itself causes the extreme weakness (regardless of which foods) and huge cognitive impairment.
     
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  12. charlie1

    charlie1

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    @ahmo - WOW!! I'm 1 1/2 minutes into the video and have decided my husband needs to watch this with me. I'll report back after watching and see how much is relevant to my symptoms. Thanks so much!
     
  13. Crux

    Crux Senior Member

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    Hi charlie1;

    Unfortunately, for those of us with a functional deficiency, most of the tests, especially serum B12, can be damaging.

    Personally, I go by relief of symptoms, not the serum B12. ( mine is >3000)

    Otherwise, I would still have most of the symptoms included in those studies.

    I don't know if you take any B vitamins, but B6 may help with digestion, especially of proteins.
     
  14. charlie1

    charlie1

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    @ Crux, what do you mean by B12 functional deficiency and also how are the serum B12 tests damaging?
     
  15. Crux

    Crux Senior Member

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    Hi charlie1;

    Rich, a highly respected contributor here, who sadly passed away last year, explains a functional B12 deficiency best:


    "High serum B12 can be caused by a functional B12 deficiency. In that condition, there is enough B12 in the body, but the cells are not able to use it properly, so they export it back to the blood, and it builds up there, bound to haptocorrin. After about a week, the haptocorrin-bound B12 is imported by the liver and recycled via the bile to the gut. This is the salvage and recycle pathway for B12. The cells of the body in general are not able to use this B12. Only the liver can import it. The other transporter of B12 in the blood is transcobalamin, and this is the one that carries B12 from the gut to the cells in general.

    High serum B12 per se is not harmful, but it indicates that there is an issue with B12 utilization.

    According to the GD-MCB hypothesis, a functional B12 deficiency is part of the pathophysiology of ME/CFS, and it is caused by glutathione depletion. Some of your symptoms sound as though they could be part of ME/CFS. If you would like to check into this further, I recommend that you view this video:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/${weburl}

    You can get the slides by clicking on the blue print below the video.

    Best regards,

    Rich"


    (I used the word 'damaging', because many people are suffering because they have been told that they do not have B12 deficiency as their serum measures are in the 'normal' range. This is my strong opinion.) :redface:
     
  16. charlie1

    charlie1

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    @ahmo, that video was shocking! I had no idea a B1@ deficiency could do so much harm. I suspect many people aren't aware and apparently, neither are many of our doctors :eek:. Learning that B12 deficiency can cause autonomic dysfunction speaks to me since I have POTS AND OI and obviously I have something neurological going on which decreased B12 can also cause.

    It seems to me the smart and quickest way to see if this is an issue for me is to get tested. If I don't have a deficiency, I'll continue on my quest re: the severe weakness issues (until I finally burn out... this is exhausting ):thumbdown:

    Does anyone know if the 'homocysteine' and MMA blood tests that were recommended in the above 2 links can be ordered by a family doctor? Or are they specialized and needing a special lab to work with?
     

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