Keri,

I'm new to a mastocytosis diagnosis, so I have much yet to learn.  Although my masto symptoms and status are not nearly as severe as many of those who post on this site, consistant headaches is something I have dealt with for many years, long before my diagnosis.  What I have found to be consistantly most helpful is to stay very hydrated.  I've found I can often lessen a headache by drinking water; sometimes the headache will go completely away.  I'll be interested in replies from others...

Beth

Hi Keri,
headaches are common with mast cell diseases. First try taking an extra antihistamine. If you are doing this often, you may need to up your meds for a bit, you might be reacting --see how bad the heat is everywhere?

The involuntary movement of the legs is called restless leg syndrome. Texan is right, sometimes Lyrica helps. I would again say, you need to increase one of your meds and see if it helps. I would suggest trying a low dose of Vistaril if those headaches dont get better.. It helps calm mast cell activity in the brain. Hope this helps!
Ramona

Susan is right all those things can cause headaches. I do however want you all to be aware that there are normally mast cells in the brain (for communication there) and there can be misbehaving mast cells too--the same ones that cause brain fog. I tried  Vistaril for 2 reasons--I read 2 different NIH studies that showed it helped with both I.C. bladder spasms and brain fog calming those misbehaving mast cells. It sure did help me! Also try an extra antihistamine

Vistaril is also good as a "rescue" drug, the same way you use Benadryl... and its fairly cheap! (a word I love ).

Rachael please let us know how you are, we are thinking of ya!
hugs
Ramona

Hi Keri!

I wish I had seen this earlier, I just got home, sorry!   There is a case of chorea and masto and I have a copy of it, if you want it.  This may be what is going on with you.  Masto has also been associated with epilepsy and it's also been the cause of Parkinsons as well as brain damage due to hypoxia.   So, masto has been shown to be connected to neurological problems, yes!

Here is that article that I have.  It's short, but sweet!!!
I hope it helps!

Lisa



Chorea: a new manfestation of MASTOCYTOSIS

Sir: Mastocytosis is a uncommon disease,
characterised by the proliferation of mast
cells in various organs of the body, which
presents in a limited cutaneous or a systemic
form.' The central nervous system manifestations
of mastocytosis include headache,
dizziness, seizures and alterations in cognitive
function.23 The occurrence of chorea,
to the best of our knowledge, have never
before been described in mastocytosis. We
recently examined a patient with mastocytosis
who developed choreic movements.

A 13 year old girl was admitted to hospital
for study ofpruritic skin lesions consisting of
reddish-brown maculopapules. A skin
biopsy was done under local anaesthetic
(mepivacaine 1%). Approximately 4 hours
later, she developed involuntary movements.
Examination revealed choreatic movements
specially involving the upper extremities and
the orofaciolingual muscles, with the trunk
and the lower extremities involved to a lesser
degree. The hands showed choreothetoid
movements. Neurological examination was
otherwise normal. General physical examination
was normal save for skin lesions. One
day after initiation of the chorea, treatment
with cyproheptadine (12 mg/d) and
ketotifen (2 mg/d) was instituted. Resolution
of the abnormal movements began
gradually during the third day after their
onset and completely returned to the
premorbid state on the fifth day. One year
later, the patient has remained well without
further choreic episodes.

Pregnancy, birth and early development
were normal. There was no history ofchorea
or rheumatic fever and the patient had not
been treated with chorea-inducing drugs.
Family history was not significant for any
neurological disease.

The following investigations were all normal;
haemoglobin determination, WBC and
differential counts, ESR, urea and electrolytes,
creatinine, blood glucose, liver function
tests, calcium and phosphate, cholesterol,
triglycerides, uric acid, serum protein
electrophoresis, quantitative assays for
immunoglobulin levels, C3, C4, autoantibody
screening, syphilis tests, coagulation
system tests, thyroid function tests, caeruloplasmin,
serum and urinary copper, 24 hour
5-hidroxylindolacetic acid and urinary histamine
levels, skull and chest radiographs,
cerebrospinal fluid, electroencephalography,
auditory and visual evoked potential
and CT and MRI of the brain. The skin
biopsy specimen showed mast cell infiltration
of the dermis.

The most remarkable finding in our case is
the presence of chorea that, to our
knowledge, has never before been described
in mastocytosis. Choreic movements were
considered to be caused by mastocytosis, not
just because no evidence of other aetiology
was found,' but also in view that the administration
of a well-known activator ofa mast
cell secretion as topical anaesthetic3
provoked the choreic movements.

The role of the mast cell in production of
disease appears to be twofold. As a consequence
ofa high tissue mast cell concentration,
there are both local effects of mast cell
infiltration, as it interfers with organ function,
and systemic effects resulting from
release of mast cell mediators such as histamine,
heparin, prostaglandins and other
peptides.5 6

Chorea can be the result of structural or
functional striatum damage.' In our case, the
possible explanation of these movements is
that as an effect of a sudden and greatly
elevated level of released mast cell
mediators, mastocytosis may induce biochemical
alteration in the basal ganglia. This
hypothesis is supported by the fact that the
development of chorea was provoked by the
administration of a well-known activator of
mast cell secretion (mepivacaine 1%).
We cannot exclude the possibility that
mast cell infiltration of the basal ganglia
were responsible for chorea. However, we
consider this possibility to be far less likely in
view of the transient nature of the chorea
and that no structural lesion could be
demonstrated by the neuroradiological
studies. In addition, the systemic mast cell
disease has been reported to involve directly
virtually all organs except the central
nervous system.'

Although no conclusion can be drawn
from our report, we believe that the causation
of the chorea in mastocytosis must be
sought at a biochemical level rather than in a
structural lesion.

LM IRIARTE
J MATEU
G CRUZ*
J ESCUDERot

Departments ofNeurology,
Pediatrics* and Dermatology.t
Hospital Universitario de Valme,
Facultad de Medicina de Sevilla,
Sevilla, Spain

Hi everyone, thank you all so much for adding your responses to my condition, I have really appreciated it and now I have some tangable information to share with my doctor.

I went as i said the other day and finally got my tryptase test  back, pathalogy had not even past it on. Apparently they were normal but my IgE was raised 140 IU/ml

I was cleaver enough to put togther information that I have found here and was able to show it to my doctor especially the print out of the tests required for subspected Mast Cell suffers. This was a huge help for my doctor to read which mean't I didnt have to try and explian things that I am sure I would have mucked up otherwise. It helped for her to know what I could be in for and I am now being refered to an immunologist and allergist at the Greenslopes Hospital.

So thank you all so much..

My headaches have almost dissappeared again.. I tried to increase the Zyrtec it did nothing, infact my head got so bad I went to bed feeling so unwell. Even though nothing has changed the headache has abated and even had a day without any. Today like most days I just have a dull pain above my eyes.

Thanks for sharing on the involuntary movements as this seems to make more sense.. I have lesions on the brain and no one could tell me what from.. perhaps we have the answere here. I will look into it more and will let you all know how I get on with the immunologist..I just wonder how long it will be before I get in to see them. I have to go to Brisbane and I am further up North on the coast, but my Gp said she did not want to send me to any one else.

I will also print out this information on involuntary movements, I am sure it to will be a bit help, thanky for taking the time to type it out.

kind Regards
keri

No, I was getting the twitching long before I started taking zyrtec. I started twitching in about 2007 and only started taking zyrtec last year when my specialist recommended I had Mast Cell.
thanks for the post anyhow..
taa
keri