P.I. The Hunt for Reasons - Early morning reaction

Woke feeling like something heavy and painful was sitting on my chest and before i was awake enough to understand why, it was constricting my throat. Chewed on a  liquid Benadryl gel cap and  tried to find the time, realized it was 6:45 and my water bottle ran out.

Hurried to the kitchen to refill my water bottle, started coughing as it filled. Bit a second Benadryl gel cap and wondered what that scent i could smell through my my partially bloked nasal passages was.

Heard my house guest say something like good morning as she headed out the door for work and a cloud of...something fainter than perfume wafted by as the coughing increased. Hurried back to my room pointing the fan out to blow any other scent away from my room.

Sat the head of the bed up. Soon started feeling better while I read Facebook to distract myself. So It went away with just two Benadryl, tho I did need to bite them.

No Epi needed, but I wonder if those other times this happened and I was blaming it on Carlie Marraro's shampoo maybe it was the house guest's? But then why doesn't it happen daily?

7:15 I shrug and decide to blog this... or should I post this friends only on my Facebook? No, better blog it so I can look back at it next time I have to play early morning reaction P.I. Besides, maybe reading this will help someone else with similar reactions somehow.

7:30 I finish editing and wonder if someone will mistake this matter of fact entry as "whining and complaining"? Shrug and sigh relieved that it no longer hurts to breathe and decide the benefit outweighs the risk of being misunderstood. Thank goodness for liquid dye free gel caps!

Update: My experiences at Mayo Scottsdale

Update on my Scottsdale mayo experiences:

Things are looking up!

Finally figured How to log onto their internet patient communication thing that gave me instant access to my medical records, and it is wonderful.

I *was* frustrated after my last appointment with Dr Lewis as he is hard to understand sometimes and I thought he blew off what I told him about ketotifin, but he did not. Mostly i have been taking a wait and see attitude because i had mixed reviews before going there.

In reading his very thorough notes, I now see that he heard me, and is holding that option open after all. What a relief. he also did listen and diagnose me when I came in which I an eternally grateful for! As a whole, my experience with mayo has been above par!

The down side with Dr Lewis may in part be due to me not hearing as well anymore. Sometimes I miss things or misunderstand. But Carlie did say he is not the beSt in person communicator. Sometimes he just looks at me and does not answer my questions. But in reading his notes I found answers! So in the future I will read the notes after each appointment.

Also his office accepts faxes for him with info and questions. That is great, and he does eventually get me answers.

My new neurologist, Dr Starling, is great!!!! She took her time and was very thorough, asked tons of questions, looked at my notes, and had ideas I hadn't suggested, plus took my ideas into consideration. She was kind, compassionate and competent, it was what I wish every first appointment with new to me doctors was like! To be honest, I almost cried with joy and relief.

She has already scheduled me for a migraine and trigger point treatment, is checking with Dr Lewis about various procedures and tests and medicines...but I suspect he will tell her it us all safe. There is no way to know without trying, it's just a crap shoot as always. So it makes me anxious, but excited to have new options to reduce my pain.

She is also referring me to a physical medicine Dr, who she is asking to consider prescribing physical therapy that will make me better, not worse. And possibly trigger point injections and steroid injections. She mentioned they cold get preservative free injections that have less fillers than pills so more chance of success because if we trigger my Mast cells the inflammation could trigger my migraine and neck pain and numbess, tingling, etc. sweet, sheer know a little something about it!

She said she us referring med to Drs who work well as a team. Super happy about that!!!! All in all, I have been lucky to get great doctors and have a very positive experience so far.

Every individual experience will vary, and not all patients mesh with the same doctors, so it seems to be a prices of part time, part luck, and part skill at finding which doctors and hospitals are the best fit, then having the right insurance.

I feel for people not having food doctor experiences, because I have been there. It is why I was so wary with Dr Lewis. But reading through his notes gives me how and gratitude. I know it may take time, but I believe a can further reduce my symptoms and improve my quality of life. That is a very good thing!!

Rare Diseases, EMTs, and Hope for Awareness

Today is International Rare Disease Day. Please donate to TMSforacure.org or NORD so rare diseases can be better understood and treated. I thought today was a good day to finish this post:

I hate going to the ER. No one likes going to the ER, but it seems Mast Cell patients like it even less because it is a treasure trove of triggers. (try saying that ten times fast) It is full of people wearing things which can trigger further health problems for me. Cologne, perfume, deodorant, some soaps and hand sanitizers can set me off, not to mention the reactions I can have to basic medications.

But my doctor requires me to call 911 any time I use my Epi. He would like me to use my Epi more often than I do. Instead I hesitate because several times when I have used my Epi the EMT's have not treated me kindly.

When the EMT's last arrived and I explained what was happening, they said I was having anxiety, not anaphylaxis and offered to leave me at home. They tried to convince me. My blood pressure was fine at this point, and due to having used my Epi I was no longer wheezing and my dry cough had reduced to almost nil. Plus there was no swelling which they usually expect in Anaphylaxis. I showed them some pamphlets about MCAD and told them that no, swelling doesn't always happen and yes, I would be following my doctor's orders and going to the ER thank you very much.

In the ER they told me that yes, I had done the right thing, and a very nice nurse name Rachel helped me out. They gave me 50 mg IV Benadryl, some Solumedrol, and ordered the tests on the prescription I always carry from Dr Lewis. As soon as they were able to move me out of the hallway they put me in to a more private area. I wore my Respro mask the entire time that I was in the ER, but while I was there I started to flare back up two times. First when the Epi was wearing off, and and secondly when someone came up to me putting a very strong smelling, alcohol based anticeptic on their hands and then touched me with it.

Alcohol can trigger me. My eyes burned and my throat felt tight, it became difficult to draw breathe in, and they decided to give me more epi. I have to wonder if the EMT was right in a sense, no I was not having an anxiety attack, but maybe I would have been safer at home. I wish more people knew about mast cell disorders so that people like me could  feel safe calling 911 or going to the  Hospital.

Please pass this on to raise awareness.

Chronic cluster migraines or MastoMigraines

At two points in my life I lived with excruciating, chronic,  cluster migraines. Cluster migraines are so painful you want to pull your brains out your eye sockets. They can feel like a sharp pinching pain in your head and make want scream but noise hurts.  They can cause other symptoms liked numbness or tingling, olfactory or visual hallucinations, and more.

As the name implies, they happen multiple times a day. Just as one starts to reduce in intensity or possibly even seem to be going away, another starts. Sometimes I could not sleep for more than an hour or two a day, for weeks on end. I went to urgent care at first and their special migraine cocktail would reduce the pain enough to sleep a couple hours, then it would come back stronger than ever. I avoided ERs but visited a couple during the waiting period to see a neurologist. I saw neurologists, and nothing they tried helped and some things made me worse. This was sack before with MACS. Finally I saw a naturopath who has a book in her office written by a neurologist who got migraines. It said there were 4 parts to head health..and honestly I have found the neurologist part to be the least of the four things. The three things I have found most helpful in reducing my headaches are: mast cell maintenance, light exercise/stretching, and stress reduction. The neurologist would include her specialty, but I haven't seen a neurologist in years as was seeming to waste money.

Reducing triggers, and adding antihistamines helps the most. A low histamine diet may help some....but whatever your particular triggers are, reduce them. This sounds impossible to those of us with salycilate sensitivity, but it's worth it! When I eat foods that are high in histamine and run into environmental trigger, migraines a likely occurrence, but staying away from the things that trigger mast cells helps immensely! antihistamines that first helped me were zyrtec during the day, and hydroxyzine at night or on days with breakthrough pain. Now i use Allegra during the day, because Dr says it's stronger, seem to need more of them, so i am not convinced.

Stretching and light exercise like yoga was the next most helpful addition. Be careful if you have vertigo or exercise induced anaphylaxis, but when i stretch, I have less migraines.

Finally and certainly not the least important of the three, stress reduction. This may also sound impossible for those living with chronic health problems and pain. the stress of less than understanding friends and family, doubting doctors who look down on talk down us and often make difficult seek treatment, emergency response teams who have never heard of a mast cell disorder let alone Mastocytosis, financial woes, and the list goes on...all can make reduction a challenge, as well as very real anxiety which is triggered by some of the chemicals released by mast cells whether you have MCAS, Mastocytosis, oral allergy syndrome or something else entirely. But a few things helped me to reduce my stress.

First I added meditation to my daily practice. Getting quiet time by myself with no distractions in other words. Even five minutes each morning helped. Yoga, part of my exercise regimen, also helped reduce stress as can other forms of exercise if you can tolerate them.

Once I  slightly reduced my stress that way, I was able to also develop coping mechanisms for dealing with chronic illness. A therapist can help think things through and problem solve or prioritize.  as well as introduce you to new or slightly altered ways of thinking about health. Sleep was one of the things i learned to prioritise as it is a stress reducer and promotes overall healing. And Hydroxyzine has a slight anxiety reducing capacity as well.

Stress reduction could be a post all it's own, but trigger reduction, exercise and stress reduction seem to be a migraine busting team!

What helped you cope with headaches?