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SweetFeatherParticipant
Thanks, mommy2seanp. She’s on singulair and advair. I think the singulair makes her cranky but she needs it for her asthma. I do think it helps but the advair I’m not so sure about. Her brother and I have more nasal symptoms and NasalCrom works really well for us so cromolyn for the nebulizer is something I’m going to ask about. I appreciate your input! My best, SweetFeather
SweetFeatherParticipantSherri, I’m sorry to hear about your daughter’s eye problems. One of my sons is color-blind and in the Navy. Many of the jobs were unavailable to him because of being color-blind. His vision is better than 20-20. He is the only one of my five kids who does not seem to have EDS (but he does have an odd stretch mark by his armpit and he’s never been overweight… ) He has a brother who wanted to go into the military but wasn’t able due to asthma and his subluxing knee problem. My best, SweetFeather
SweetFeatherParticipantStress, mast cells, pain…. more on hydroxyzine
“Mast Cells and Stress—A Psychoneuroimmunological
Perspective”
“… young boy mistakenly diagnosed
and unsuccessfully treated for epilepsy. When it
was recognized that his seizures were induced by acute
stress and were associated with his mastocytosis, he was
successfully treated with a combination of the anxiolytic
antihistamine hydroxyzine and the tricyclic doxepin. The
efficacy of these compounds may be explained by the fact
that mast cell activation can be inhibited by certain tricyclic
anxiolytic medications, such as amitriptyline and
hydroxyzine82, and benzodiazepines.83 In fact, mast cells
have been reported to express high affinity benzodiazepine
receptors.84,85 Hydroxyzine was recently shown to
inhibit neurogenic inflammation and experimental allergic
encephalomyelitis in rats.86 In humans, hydroxyzine
has been used successfully to treat acute pain87 and remitting-
relapsing MS.88”
http://algonot.com/articles/wp-content/uploads/2010/10/stressmastcells.pdfOn autism and seizures:
http://algonot.com/articles/wp-content/uploads/2012/03/Autism-seizures-JNI-2012.pdf
http://algonot.com/articles/wp-content/uploads/2011/12/Autism-mast-cells-BBA-2012.pdfSweetFeatherParticipantScared, I found this I thought you’d be interested in:
http://mastcellmaster.com/documents/Brain-Inflammation/Brain-Res-Rev-mast-cells,-migraines.pdfHydroxyzine is Atarax or Vistaril. I’m hoping my daughter’s doctor will try her on it to see if it will prevent or lessen her migraines. Her last one sent her to the ER after she couldn’t speak for half an hour and had excrutiating pain. So scary! I’m mad they didn’t give her an MRI. She saw a neurologist years ago after nearly going into shock after a crosscountry race. Doctor said it was syncope brought on by a migraine being triggered….with what I know now, I think it was exercise induced anaphalaxis.
SweetFeatherParticipantScared, I wrote a post on this forum about my PHEO Nightmare (see if you can find it)… your episodes sound similar to mine.
Have your doctors ruled out a Pheo or Carcinoid? Have you had a 24 hour urine catecholamine test? And a lying/standing plasma catecholamine? What about a urine methylhistamine after an episode?
My symptoms were WORSE on a betablocker… that is when my metanephrines rose over 10 times normal on a lying plasma test. I wonder what it would have been standing!!!!
Betablockers have to be used with great caution in those with HyperPots because they can trigger mast cell degranulation. Have you felt worse since the Metroprolol?
Ask your doctor about trying NasalCrom, Gastrocrom, hydroxyzine, and ketotifen. After you read everything here on Dr. Diana’s site and the forum 🙂 I recommend you read Dr. Theoharides research on mast cells in inflammatory disease. (mast cell masterdotcom) And read at the mastocytosis society’s website… especially their Emergency Room document and medicines to avoid. Research all the POTS helps at dinet.org.
http://www.dinet.org/what_helps.htm
http://www.dinet.org/what_to_avoid.htmDo you drink enough fluids? I like SmartWater but there are recipes for homemade electrolyte solutions. I read HyperPots patients may not want to salt and fluid load but it helps me a lot but I usually have low blood pressure.
You will get feeling better. We are here for you!
My best, SweetFeatherSweetFeatherParticipantDr. Diana… I’ve had two kinds of brain fog so I wanted to be clear about which type. 😉
1) Brain fog from gluten: became nearly constant and associated with bloating, groggy, slow cognitive processing, and sleepy all the time… (felt slightly drunk from toxins from leaky gut)
2)Brain fog from HyperPots: episodic, awake, usually normal cognitive speed (unless dehydrated or heart rate is really high), slightly anxious or like I’ve had too much coffee… word-finding difficulty and trouble remembering line of thought if interrupted. I believe this is from mast cell activation… metanephrines, histamine, yadayada… in the brain.
So that’s why I always feel terrible on steroids! I try to avoid them like the plague!
Thanks!
My best, SweeFeatherSweetFeatherParticipantDr. Diana, please jump in anytime! Thank you so much for doing so! I’m sorry about your shoulder. My mom has frozen shoulder, so I know it can be very painful. I am very fortunate I am one of what seems like the few without pain issues as of yet. I haven’t tried Diamox yet. (I’m one allergic to sulpha and I’m going to ask about doing a cautious trial of it.)
Ourfullhouse, I have 25 mg pills of Atarax and it is WAY too high of a dose… it just knocks me out. I could not function taking that during the day AT ALL. I have been taking about half of a pill at night and just a small chip (less than a 1/4) during the day. It comes in a 10 mg pill so I’m going to ask my Rheumi for 10 mg pills instead. There is also a liquid form but I don’t know what fillers it uses. I am allergic to percocet and morphine also. I got a rash and itching with percocet and no rash but insane itching with morphine. The hydroxyzine is supposed to help some pain killers work better but I haven’t used Atarax with any pain meds at all.
How does the Atarax help? I’m not sure what everyone else means by brain fog, so I’ll explain my symptoms. Sometimes, I have trouble “finding words.” I will be trying to say something and if I get interrupted I have trouble remembering my “line of thinking.” There are times I will be talking (or writing)and I know what I want to say and it is like I suddenly can’t access the file I was just in… does that make sense to anyone? But this doesn’t happen all the time. It’s like my brain becomes a sieve or like swiss cheese. So I can be talking very technically one minute, with all kinds of medical jargon… and suddenly it is like ooops! Where was I going with this? UGH, ugh, ugh…. and it feels like I’ve got a little mouse in my brain running around in a maze trying to find the word I want. If I’m distracted, I can forget what I was talking about or the direction I had been going with my conversation. So I stammer… umm, mmm. “What was I saying?” Then when I remember I’m off and running. It is like I’m an athlete doing the hurdles and then tripping and falling… it is hard to get up and jumping again once I’ve tripped and fallen. It is so embarassing. Anyway, the ATARAX seems to really help me with that… to not be a “space cadet”. It also helps me pay attention and listen better than concerta or adderall do. I have much less trouble finding my words, my speech is more fluent, and my thoughts are more coherent. But this is an episodic thing with me… I’m a “space cadet” sometimes and not others. I remember being teased about this in high school. “GAWD…. you are such a space cadet sometimes!” Many people have told me they are shocked I am as intelligent as I am when they got to know me. I always come off as such a “ditz” when I first meet people. I thought it was from being shy or social anxiety, but when I meet most people for the first time… I’m usually standing up!
My best to you both, SweetFeather
SweetFeatherParticipantDanielle, have you had a tilt-table? If not, you could do a poor man’s tilt-table or get a heart rate watch with a chest strap or a Digifit Connect 2 for iphone, ipad, or itouch. Have you tried NasalCrom when your nose gets runny? Have your doctors checked your plasma catecholamines lying down and standing? What are your other symptoms when you crash? Do you have to urinate a lot after your “crash”? Does your crash sound like an episode of mast cell degranulation?
SweetFeatherParticipantRae, have you seen the pre-surgery recommendations on the Mastocytosis Society’s website? They have a list of medicines which are known mast cell degranulators to avoid and a protocol to follow pre-op to help prepare for surgery. You can print that out and discuss it at your pre-op appointment!
Have you looked into histamine foods aggravating your rashes? Histamine seems to have a “barrel effect” so you need to look at individual foods AND the total amounts of histamines. Google: Chronic Urticaria, Histamine Intolerance, DAO (diaminase oxide) for relevant info.
PLUS! Be sure you watch Dr. Diana’s video on Histamine! Right here! Oh… and be sure you ask for a low histamine diet in the hospital! Best of luck to you with your surgery.
Take care, SweetFeatherSweetFeatherParticipantAlso… how’s your gut? Years ago I had similar sleepy symptoms… I was sooooo sleepy and exhausted but I was also not digesting foods well. It got so bad I couldn’t digest raw fruits or veggies or even lettuce. Whole grains killed me. I seemed to feel best eating French bread with butter and jam. Except I was still sleepy! Celiac testing was negative. I had occasional bouts of lower abdominal pain but LOTS of bloating. I just kept getting sleepier and sleepier and i wanted to go back to sleep about as soon as I got up. Finally I was desperate after a bad episode of lower left abdominal pain and I went on the SCD diet because of all the positive reviews of “Breaking the Vicious Cycle. ” Within four days it was if a Deep Fog lifted and my sleepiness abated (I still get brain fog but this was THICK almost intoxicated brain fog plus sleepiness… grogginess) My blood pressure was really low in the morning too. Have you taken your BP/pulse when you wake up before you get up? For me… I think I had developed a really leaky gut and i was being poisoned from fermenting non-digesting food. Is there grease floating in the toilet? Other signs of malabsorption/bad digestion? Just a thought. Sorry not a pleasant one.
SweetFeatherParticipantHave you read any of Dr. Jack Kruse, the lowCarb paleo neurologist/blogger’s blog? Some find him controversial but he has an incredible analytical mind and his posts will give you a lot to ponder. He has my head spinning… even more than usual.
SweetFeatherParticipantMaffin, first of all… have you had your catecholamines tested to rule out a Pheo or Carcinoid? If not, be sure to ask about doing a lying/standing plasma catecholamine test not just a lying down one which is standard. Morning is usually best, but ask lots of questions beforehand. Fasting? Diet restrictions for how many days before hand? Need to go off any meds? Make sure the lab is prepared ahead of time to do it right the first time. Take a blanket and an ipod with relaxing music. Be sure they put the IV port (is that what it is called?) in BEFORE you start resting the 20 or so minutes and don’t be dehydrated but don’t be super hydrated either if hydration enables you to stand for long periods of time sometimes.
Have you read the research at Dr. Theoharides’ site (mastcellmasterdotcom)
Especially:
http://mastcellmaster.com/documents/brain-health/J-Clin-Psychopharm-2011-Brain-Inflammation.pdfWatched Dr. Terry Wahls’ TedX talk “Mind Your Mitochondria”?
Researched Senobi Breathing?
http://www.ncbi.nlm.nih.gov/pubmed/21551954Have you talked to your doctor about trying hydroxyzine (Atarax or Vistaril)?
I could NOT get my son’s doctor to listen to me that I thought his inattentive ADD was really POTS and he can sometimes stand for a while without high heart rates if he is hydrated. He spontaneously VOMITED after five minutes of a Poor Man’s Tilt I made him do so I rushed him to the clinic the next day and NOTHING. They’d only keep checking for ten minutes and they looked at me like I was nuts or had Meunchausen by Proxy even though I’d had a positive tilt. So… I got a Digifit connect 2 (for my iphone but they make it for ipad and itouch), a garmin chest strap, and I hooked it up and sent it with my son in his cargo pants pocket. VOILA!!!! Something about a visual chart in RAINBOW colors and with just a glance we had a referral to a pediatric cardiologist! So…. anyone having trouble with their doc listening or even unwilling to look at heart rate data… consider the digifit connect 2 (I downloaded Icardio from itunes for a small fee too) or another application similar. (I’m not sure what has come out this last year, so research it for yourself) You may be shocked how a doctor who doesn’t seem to listen may quickly take heed when they SEE the data. Good luck!
My best to you, SweetFeather
SweetFeatherParticipantOh, Ourfullhouse, I’m sorry I wasn’t clear. Dr. Theo recommends hydroxyzine (Ararax, Vistaral) for a variety of inflammatory conditions. If you read all his research he’s looked into a lot of inflammatory conditions. One thing they have in common is INFLAMMATION and mast cells play a huge roll in all of them.
from mastcellmasterdotcom
“Mast cells are known for their involvement in allergic reactions, but we were the first to show that they are also necessary to inititate inflammation, thus participating in inflammatory diseases that worsen by stress, such as autism, cancer, chronic fatigue syndrome, interstitial cystitis, migraine headaches, psoriasis and multiple sclerosis. We have developed in vivo and in vitro models for these diseases and we are studying neurohormonal activation of mast cells. The only plausible way to explain how mast cells can participate in so many diverse processes is their ability to secrete distinct chemicals relative for different pathophysiological settings.”Here is Dr. Theo discussing hydroxyzine for Interstitial cystitis patients:
http://www.ic-network.com/guestlectures/theoharides1205.html“Hydroxyzine is unique because it has four actions. (1) It is an antihistamine, of course. (2) It is also able to reduce anxiety. The word ATARAX is Greek and means to calm down. (3) It also blocks the release of histamine from mast cells (about 30% ). (4) When used in combination with opioid pain killers it creates better pain relief. So, my initial recommendation for younger, newly diagnosed patients or those that haven’t had symptoms more than a year or two, is to start with hydroxyzine at 25 mgs at night and build it up over a few months to 75 mgs at night together with Cystoprotek. If you only take hydroxyzine every now and then, it’s sedating. But if you take it every day, it’s far less sedating. Hydroxyzine is available in pill, capsule or as a liquid elixir. Atarax starts at 10 mgs, Vistaril at 25 mgs and the elixir starts at 5 mgs per teaspoon. As with Cystoprotek, you have to take it for 3 to 4 months. I do not recommend that it be used with anyone who has tremor in their hands because if you take more than 75 mgs per day, sometimes the tremor can get worse.”
I found this article about antihistamines and the BBB.
http://www.ncbi.nlm.nih.gov/pubmed/2892448
“Receptor effects of cetirizine.” (Zyrtec)Thanks so much, Dr. Diana, for all your time and efforts bringing us hope and support.
Big hugs! SweetFeatherSweetFeatherParticipantI’m sorry I wasn’t clear about the timing! From what I read, the breathing is for only one minute at a time but three times a day. I haven’t found a Senobi expert though. This is from what I gathered on the net. I read there are variations sitting, standing, with arms up but fingers not touching, and with arms up and fingers intertwined with palms facing upward and with breaths from the abdomen and breaths from the thorax. If anyone finds a good You Tube video, please let me know. The ones I saw were yoga breathing and similar but not the Japanese Senobi Breathing.
I’m starting slow… doing it sitting and after my mcad meds are onboard. I’m not an easy “shocker” but if I was, I’d have asked my doctor about it first. I would be scared to do it at all with your condition without checking with the doctor, PalominoMorgan. I am so sorry you have that extra syndrome on top of everything else. It always amazes me how alike and yet so different our symptoms can be even within our own families. It is a good reminder that even with something like BREATHING, we need to be cautious adding anything new and it is best to check with our docs first!
My best, SweetFeatherSweetFeatherParticipantDr. Diana, have you read Dr. Theoharides research into hydroxyzine (Atarax) on his “mast cell master” website?
http://mastcellmaster.com/http://mastcellmaster.com/documents/IJIP-MS-hydroxyzine.pdf
“A PILOT, OPEN LABEL, CLINICAL TRIAL USING HYDROXYZINE
IN MULTIPLE SCLEROSIS”
Table I. Hydroxyzine’s properties relevant to MS
• Anxiolytic, but not muscle relaxant
• Partial mast cell secretion inhibitor
• Partial BBB permeability blocker
• Penetrates into the brainI am doing a trial on Atarax and I am seeing better control of my ADD-inattentive than I had with either Concerta or Adderall! I sleep REALLY well at night too. I am going to ask the Neurologist about doing a trial on my teenage POTSIE/inattentive son. He can’t tolerate stimulants due to the anorexia he gets on them and he’s already on the thin side and just going into his big growth spurt. He’s been doing much better on NasalCrom and Zyrtec but I’m hoping the Atarax will help him like it does me. Anyone else find Atarax helps their brain fog?
My best, SweetFeather -
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