Sarah4444

Me too. As I got sicker this feeling got worse (and as it got worse I was able to do less and less and got sicker). Now that I am on the meds I am, I have been able to very slowly and gradually increase my ability to tolerate light exercise. But it's still very variable. I can swim (lightly) 20 min a few days in a row and then for some reason the next day have to struggle to manage 10 minutes, feeling too weak to haul my arms out of the water.

Angela, I don't know why your heart rate would go up after exercising, but in my case I am finding exercise to be both helpful (over time) and very frustrating (in the short term). The mast cell disorder people talk a lot about things that trigger anaphylaxis for them, but not necessarily like eating a peanut would cause anaphylaxis in someone who is allergic - with mast cell disorders they use the analogy of a cup gradually filling throughout the day as you do things that "trigger" symptoms. For me that has been a helpful image. Some days I wake up with the cup already 3/4 full and it doesn't take much to tip it over, and other days I can do a lot more. For me, exercise seems to be a huge trigger in the short run - the more I try to do during the day, the more likely I am to end up with a flushing/tachycardia/shortness of breath, etc. episode at night. The more triggers I am exposed to (heat, standing, stress, exercise, eating, alcohol...) the more likely I am to tip over into a severe episode. It feels like the OI, hypotension, tachycardia, etc. are my body's reaction to ongoing anaphylaxis triggers (and the whole process over time has caused this nasty POTS business). So I guess what I am trying to say is maybe exercise is also a trigger for you and you are noticing your heartrate increasing as it tries to hold up your bp which falls in response to degranulation/anaphylaxis. Just an idea.

I had lots of trouble with itching and it's much better since I started the MACD meds - when it flares up again, Benedryl helps.

Have you tried over-the-counter Zantac and Zyrtec to see if it helps you with these symptoms? It would at least give you an idea and some info to share with the doctor. None of my docs have heard of MCAD either, but I have been lucky to find one who is at least willing to listen and precribe the MCAD meds based on the fact that they help me.

tinks, when this was really bad I would wake every day at about 3:30 AM with an awful feeling of severe malaise/impending doom (which suggests to me now that this was an anaphylactic-type phenomenon for me). I would have a sensation of falling (I would even be woken from dreams of falling sometimes), then have tachycardia, flushing, sometimes itching and often severe/sudden diarrhea. Doxepin in MCAD is taken for its antihistamine properties, and it really helped me with this problem.

I used to have the 3-4 AM episodes, but they stopped once I started 20 mg doxepin before bed. I also have really rough mornings, just seem to have to wait it out - if anyone has found any way to improve their AMs, I'd love to hear about it. If I have to try to function in the mornings I do have a slump around 3:30-4 PM. It leaves me in rough shape when I see my kids off in the mornings and often when they get home, which really frustrates me.

Anna, do you know what the explanation is for incontinence in EDS? Several mast cell disorder patients I have spoken with also feel tied to their bathrooms for various reasons. I have episodes of extreme urgency, no incontinence (yet?).

I suspect I may have more food sensitivites than I realize. I know I have trouble with msg, and am avoiding gluten - but I have trouble eating at all early in the day, and after meals tend to flush. I don't know if this is because of particular foods I am eating or the result of eating itself. When I was very ill I had severe reactions to what I now know are high histamine foods (ie eggplant, canned tuna). I also came across a list of foods very high in histamine (champagne, beer, sauerkraut, etc) and realize I have been avoiding those instinctively my whole life.

Is the POTS DVD still available somehow? I filled out the order info a while ago but thought maybe because I am not in the US I was supposed to do something different to get it? Is it on youtube somewhere?

I know how you feel. With regard to the BMB, I may have to end up making the same choice - except to see the mast cell specialist I'll have to go to the US. It's a hard decision. If you do decide to go to the local person, make sure they are fully aware of the special aspiration, staining and genetic testing procedures that have to be done, so you don't have to end up repeating it. And as Julie says, make sure they know that traumatic procedures and CT contrast cause reactions in many with mast cell disease, so they are prepared to help you if this occurs (and so you are pre-medicated). I have had less trouble with stairs since I started on the meds combo that has allowed me to do gentle daily exercise. I still would not be nearly well enough to look after two little ones (I can barely look after mine and they are older), but if you arrange another nanny, you may still be able to recover enough to handle the stairs, so maybe selling your house isn't necessary yet. Also, imagine how hard moving would be. Hang in there, and please keep us posted.

Not yet. I'm worried about trying again, since I seemed to have an increase of anaphylactic-type symptoms last time.

I don't know if this is any consolation, but I was 15 when I first remember thinking to myself "Man, why is it so hard to concentrate right now?", and it's only been the last few years that the brain fog has gotten extremely severe (I'm 41). I was able to make it through university and grad school (now I know why those years were so hard!) and for me the decline has been relatively gradual, again except for the past 3-4 years. It seems to take different courses for different people. And I have no idea why, but brain fog is the one symptom I really notice seems helped by my avoiding gluten - I might be wrong with all these different things going on, but when I have tried eating gluten again, it does seem to worsen dramatically. It will take a lot to keep me away from cakes and pies, but keeping some degree of cognitive function would be worth it. Hope you're feeling better today.

I have tons of round, light brown spots that look an awful lot like the ones in your photos, and they are permanent. However, I am wondering if anyone ever gets some that come and go - I have two right now, and the best way to describe them would be that they look little tiny blisters, but they are hard, not fluid-filled. I was going to show them to the dermatologist, but I don't see him until August and I can tell they are beginning to disappear. Not sure what to do - he is not nearby.

I don't know the cause, but I have been having this feeling for a very long time. When I worked in the late 90s I also had a secret couch in the building where I would go to lie down - at the time I thought I was just relieving pain, but now I realize I was trying to get blood back into my brain. It has only gotten worse for me since then, but then I have only found out about POTS in the past year.

I have lots of trouble with this and it is so frustrating. Yesterday I took my son to the park and told him we had to bring milk for the fish - I meant bread for the ducks. Then I looked all over for my watch and it was on my wrist. He thinks this is all hilarious, but I feel like this all the time to some degree at least and it's incredibly annoying and debilitating. My neurologist believes it results from cerebral hypoperfusion. Because of OI I couldn't last long at the park and we had to come home before he wanted to, disappointing him as usual. I have been very sick with this for most of his life and feel terrible about what it has cost him as well as me.

That's exactly my question. So far the anti-histamines have helped me with nausea, diarrhea, anaphylactic symptoms - but I still have severe orthostatic intolerance. Naomi, I am also have a lot of difficulty finding doctors willing to listen and help me.

It has a lot of attachments and is mainly mast cell related, so I posted in on Mastocytosis Society Canada. I'm also tired, but if anyone wants to check it out there, I'd be happy to answer any questions. And I'd still be wondering what in the world was even going on if you hadn't pointed me in this direction, Julie.

My new motto in life is now: Just ask Julie

I'm so sorry to hear that you are having so much difficulty. It makes me think that maybe oral sodium cromoglycate might help you. It is an MCAD med, but apparently has been used for people with food allergies for a long time and is considered a pretty safe drug. I dissolve my dose in hot water and drink it 20 min before eating and it helps me a lot. The only problem is that it is a very expensive drug (mine costs about $400/month I think, and that's up here in Canada), and I don't know if you have a drug plan. Another idea would be to try Benedryl about half and hour before eating and see if it helps a bit. A lot of people with mast cell disorders have all kinds of trouble eating - some even end up with feeding tubes - so don't blame too much of this on anxiety. However I agree that being anxious makes everything worse, even the physical reactions, so if you are able to tackle the physical and anxiety parts of this at the same time you might be most successful. Have you tried reading the book called "Full Catastrophe Living" by Jon Kabat Zinn? He has some techniques that you might be able to use to calm yourself and try to sort things out a bit. Hang in there.

I would check this out with people who know a lot more than I do about mastocytosis, but I know some of them have a lot of difficulty with CT scan contrast and pre-medicate to avoid reaction. Others report having increased symptoms after BMB, and they attribute it to stress, pain and trauma I think.

I know how complicated and frustrating this can be, and I am sorry you are not getting enough support from your family. With regard to meds I am still a work in progress, but for me it went like this: I was already taking synthroid, so I knew the awful symptoms last summer/fall weren't due to hypothyroidism (couldn't stand up at all, bp crashing even when supine, tachycardia 200 bpm, crawling to the bathroom and back to bed). After starting midodrine I had some mild improvement, but still had ongoing severe nausea and diarrhea, severe OI, brain fog, etc. I started over the counter Zantac and Zyrtec/Reactine and did slightly better again. Saw dermatologist re masto, increased Zantac to 150 mg twice a day and Zyrtec to 10 mg twice a day and added Nalcrom/Gastrocrom 200 mg four times a day (diluted in warm water 20 min before eating) - more improvement. Added doxepin 20 mg before bed and could finally sleep again - hooray! But I still had severe, ongoing OI/POTS and many other symptoms less severely. As I just discussed with Chaos, I can't tell what causes what, but since I was seeing gradual improvement with the MCAD meds I added Singulair 10 mg - no obvious/immediate improvement. My midodrine was increased by autonomic doc to total 35 mg/day and that helped a bit. I was able to start exercising a tiny bit more vigorously at this point and then noticed on these days would have predictable anaphylaxis at the end of the day. Told this to Dr. Castells, she increased Nalrom/Gastrocrom to 300 mg four times a day and added Ketotifen 1 mg twice a day - I just did this last change this week. So now I am taking tons of meds and not very comfortable with this, but seem to be slowly improving (or at least stabilized for now) after 25 years of gradual and then accelerated decline, so I am going to keep adjusting them and trying to get more and more exercise to see where it gets me. Also, avoiding gluten seems to help me - especially with brain fog. I keep trying to figure out why I got so desperately sick last year, and now I wonder if it was partly due to medications I was taking interacting with underlying medical conditions I didn't know I had. For instance I started taking long-acting narcotics for pain in 2005 - opiates I have since learned, are mast cell degranulators. I tried Cymbalta for pain in Feb/10 and that's when POTS/MCAD became so brutal and obvious that I could basically self-diagnose (my diagnoses listed below are not my own opinion, though, I subsequently saw docs, had TTT, etc.) - waaay too much NE I'd guess. I think I accidentally made my illness a lot worse by taking these meds, and would love to now take none, but hope that stopping the wrong meds and finding the right ones might help turn things around. We'll see I guess. I hope some day to understand the whys of all this, but it the meantime this is what I am up to.

I am looking specifically for photos of diffuse cutaneous mastocytosis, the one described as a freckle-like rash. For now most of my freckles are on sun-exposed areas, but some patches of them are growing and I can see "shadows" of freckles even on areas not usually exposed to sun. There is one phote of DCM you find over and over when you look online: http://www.nlm.nih.gov/medlineplus/ency/imagepages/2438.htm It does look familiar to me, but I'd love to see other pics. I also have come across articles about familial diffuse cutaneous mastocytosis, and DCM causing recurrent anaphylaxis and hypertension in one patient (a baby). I'll post them as attachments on MSC if anyone wants to see them.

I have that exact same feeling, and also wonder about it. Just to complicate matters, Dr. Francomano tells me that many EDS patients also have swallowing issues due (they think) to brain stem compression or occult tethered cord. As sugartwin says, I think we have lots of doctors out there looking at the same elephant from different angles. It does get worse when I have distinct anaphylactic episodes, but I think when that happens I may actually be layering one throat constiction feeling over the other. The ongoing annoying one may be due to chronic low-grade anaphylaxis, a rubbery thyroid, GERD, EDS-related brain stem issues...but it definitely gets worse when the throat constriction due to anaphylactic-type MCAS stuff kicks in (clear as mud, eh?). So Julie's right, it might be worth seeing if and how much anti-histamines help you - they seem to help me with the worsening of the throat constriction during flare ups, but I still have the ongoing annoying tight turtle-neck feeling, especially when I lie flat on my back. I know what you mean about it seeming like bad POTS leads to mast cell reactions. I keep wondering about that too and we have discussed it on the MSC thread as well. It's possible that POTS is caused by something else and it often accompanies JHS, but then when it gets really bad it causes mast cell activation symptoms. On the other hand, we my have excessive mast cell activation going on all the time that is only expressed as POTS symptoms, except when it gets really bad and is clearly seen as flushing, anaphylactic symptoms, etc. A third option would be POTS caused by some unexplained source interacting with a separate but co-existent mast cell disorder, causing a snowball effect and really bad POTS.

Actually there are two forms of Low Flow POTS - and the angiotensin II Low Flow variety is almost but not exclusively female. The other - NET deficiency is more equal in terms of sexes. There are POTS patients with hyperadrenergic presentations that are also Low Flow but have yet to be catagorised. Low Flow POTS with elevated angiotensin II correlates with receptor hypersensitivity - there is an increased response to norepinephrine because increased angiotensin II through impaired catabolism causes increased oxidisive stress and less nitric oxide avaiable for neuronal activity where its chief role is to dampen sympathetic outflow. So these patients have an excessive response to relatively normal norepinephrine levels, vasomotor nerve failure, absolute hypovolumia, pallor from reduced cutaneous blood Flow and reduced body mass index. And almost all of the patients are female. And all Low Flow states impaire the skeletal muscle pump because they impaire blood Flow to the legs and calves through excessive and inappropriate vasoconstriction Thanks so much for posting this thread, Chaos. I wonder if there are also some of us who have excessive responses to excessive norepinephrine leves. When I read threads like this I wish I had a more extensive science and medecine background.

Rach - I had the exact same thing happen when I took Florinef- my eyelids swelled up. I had forgotten that, but now that I look at it in retrospect, along with the increase I had in that strange cough I have seen on the MSC forum associated with anaphylaxis, and the chest pain/breathing problems, it makes me suspect even more strongly that Florinef was triggering anaphylaxis in me.