Scared and Looking for Some Direction

[ScaredSingleMamainMaryland]

I don’t really know where to begin. I found this site thru my sister who had stumbled across Dr. Diana’s work while trying to solve her own mysterious illness a while back. She has since been diagnosed with EDS Classical Type and Mast Cell Activation Syndrome by Dr. Francomano (sp). I just finished paperwork and sent it in requesting to see this same geneticist. I have been reading thru Dr. Diana’s work and watching her videos and have been in awe of her perseverance, passion, and intelligence. I have been lurking on the forum the last two weeks. Being that my Dr. who is managing (or maybe not so much) my POTS has stalled at that diagnosis and just tries seizure/migraine meds and yet I worsen, I thought I’d seek some direction and comfort here.

Long story short as it can be (presented in bullets for hopes it will be clearer):
*Mom, sister, and I have some similar symptoms (sister dx’d w/EDS and MCAS, mom dx’d with familial tremors, diabetes, hypothyroidism, neuropathy, illiac aneurysm, and stage IV breast cancer)
*Before I had my daughter at age 23, my health history included asthma, GERD, unexplained chest pains from ages 7-10, anorexia (ages 15-18), questioned mitral valve prolapse (was told years late as 2r I did not have), joint and muscle pain that Rheumy suspected Fibromyalgia for, and allergies (allergic to 36 out of 40 items tested for)
*2 weeks after I gave birth to my daughter I had my first episode of angioedema and anaphylaxis (from 2003 to 2004 I had about 7 life threatening anaphylaxis attacks, since I have had many mild to severe allergic type of reactions)
*Began having migraines in 2004
*In November of 2009 I began with episodes of tachycardia (pulse would go up as high as 250 from about 85-90 at rest), chest pain, and dizziness – I was originally diagnosed as having SVT and put on beta blockers
*In 2010 tachycardia attacks would be almost cyclic and would include dizziness, chest pain, hypertension, and sometimes nausea
*In 2011 episodes became worse and included all the usual symptoms as well as vertigo, cold extremities, presyncope, shortness of breath, odd sensations in spine, episodes of bradycardia, and bowel urgency-all symptoms were confined to episodes that would last as little as 5 minutes to on and off for as much as 4 hours-was then diagnosed with IST after a holter monitor was done during a calmer month
*Migraines also increased in 2011
*February 6, 2012 I had a moderate episode of anaphylactic like symptoms that I was able to treat with Benadryl, Albuterol, Zantac, and Prednisone at home -allergy symptoms persisted until 2/9/12
*February 10, 2012 my sister called an ambulance for me because I was having stroke like symptoms (headache on one side of head, dizziness, high blood pressure, confusion, right sided numbness, and inability to talk)- dr. At ER diagnosed as complex migraine
*From 2/10/12 on my symptoms have worsened and are now not contained to just the episodic attacks but leak thru to throughout the day pretty much daily (twice I have had anaphylactic like symptoms that follow a day or two later with severe autonomic episodes)
*Since about March 2012, I noticed pulse always increases 30-70 points whenever I climb stairs, stand for more than a few minutes, eat, shower, or am very hot
*Have been diagnosed this year with POTS (per tilt table test), complex migraines, and possible partial temporal lobe seizures (per EEG)
*My symptoms (that may be part of a sudden attack or come on individually) include: allergic like symptoms, tachycardia, hypertension, one episode of severe hypOtension, shortness of breath, wheezing, chest pain, chest pressire, typical migraines, sinus headaches, neck pain, joint pain, electric shock type of sensations in chest, neuropathy like symptoms, leg heaviness, leg weakness, swelling in temporal arteries, episodes of low oxygen as seen on pulseoximeter, pressure in head, extreme pressure behind eyes, nausea, acid reflux, dizziness, vertigo, short term memory problems, tremors, stiff feeling in spine, hot and crawling type sensations in spine, bowel urgency, urinary urgency, alternating constipation and diarhea, odd taste in mouth, hands swell, limp at times when walking due to stiff or heavy feeling, inability to talk at times, occassional swallowing difficulties, dizziness and seizure like symptoms that are often triggered by reading, eating, stress, TMJ, cold sweats, sensitivity to cold and heat, hot flashes, pallor, flushing, pain in certain veins, spider veins in legs, and maybe more I just cannot remember right now
*Presently take the following meds: Gabapentin, Metoprolol, Asmanex, Albuterol, Zantac, Zyrtec, Flonase, Vitamin D, Midrin (as needed), and Prednisone and Benadryl (as needed)

I am seeing a neurologist at allegedly one of the best hospitals but he seems to not understand a lot about POTS and is making no effort to determine the cause of the POTS (though he has been helpful in getting me short-term disability from my work). I am worried because my symptoms are getting worse and I am not able to function normally. I have a daughter with autism and epilepsy, a disabled sister with a rambunctious child who lives with us, and a mom with stage IV cancer. I am used to and need to be able to take care of others but now I can just about barely care for my own basic needs and the basic needs of my daughter and that is it. I also am getting into financial trouble as my STD does not even pay half of my normal pay and my bills are piling up while I am out of work. The headaches, pressure, and artery swelling in my head have been relentless for the last couple weeks. I am so worried my illness is not as benign as my Dr. Keeps saying and something will happen to me and my daughter with special needs will be left without a mom. Anyway, I guess I am really looking for any direction and comfort others who understand can give. THANK YOU for listening to me! God bless all of you!

[PalominoMorgan]

Will read and write more later. I have a child begging me to get up. You are not alone though.

[Barbara]

Hello,
I can relate to many of your symptoms but my main observation, from your history, is that your symptoms were worsened after you gave birth. There’s one thing I remember about being a new mum (albeit 27 years ago!) and that is, that you spend an awful lot of time looking down i.e. with your head in ‘flexion’, feeding, cuddling, chatting to baby etc. Another activity that worsens your symptoms is reading, again you’ll be looking down.

I bring this to your attention because my own symptoms were worsened when my head was in this position and, although I didn’t recognise it as anaphalaxis, my throat would swell, if I looked down at a magazine and turned left, right, left, etc., as you do when glancing through the pages.

One occasion when this happened I was actually in the hospital waiting room, waiting for my ENT appointment. The episode lasted approx 30-40 mins and had unfortunately subsided by the time I saw the consultant. However, when she checked my throat, she said it was red but blamed it on ‘Gastric reflux (even though I hadn’t had a reflux attack!!) and told me to continue with the GR medicine (crazy!).

Also, when I woke in the night with the pains from HELL, sort of paralysed, able to only move one tiny muscle at a time (which worsened the pain!) until I’d got use of my body back – I noticed that again my chin was right down on my chest (head fully in flexion).

You need to bear this in mind and try and adapt the things that you do, so that your head is straight forwards as much as possible, observe and adjust, I’m pretty certain it will help.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!

[ScaredSingleMamainMaryland]

Thank you Barbara! I do notice my head being down is a contributor (sp). However, I have symptoms many other times when my head/neck is in normal position. I try to adjust when I can (I.e. I now sit for showers and read less and use my phone instead of a big computer, etc.). One scary thing of late is my symptoms used to subside with sleep (so long as I was not in an attack or having symptoms when I went to sleep) but now the tachycardia, neuropathy type issues, dizziness, and headaches are happening in my sleep and waking me. I am so frustrated that my Neuro. Says it is POTS and wants to look no further and do nothing more than prescribe seizure/migraine meds. Anyway, I very much appreciate your reply and suggestions. Thank you and God bless!

[Tennille]

((((((BIG HUGS)))))). Wow…. you have a huge load to bear. I just wanted to let you know, you are not alone. Your post could have easily been mine with all the symptoms, etc. I have no idea what kind of help that could be available to you. Are you disabled officially? If so, are there programs where someone can come in every other day or every day and help out? It seems you don’t have anyone who can help you 🙁 I’m so so sorry. I can’t imagine the chaos, stress, worry and on top of being so sick too. I see this question/situation alot, in different states, different countries, etc (on other boards), and I just have no clue how to help. I wish there were programs set up for folks like us who need some helping out. Maybe you can search for some, or call your local department of human services and see if they might know of any programs, or people you could call to come in help you some? Maybe explain the situation? Or perhaps you can contact some churches who may have some type of programs to help the disabled, etc. It’s possible, sometimes you just have to dig deep…. and i know, most times we are too sick to keep digging, but it seems, if we are to get anywhere for ourselves, diggin for info is a must.

You are in my thoughts & prayers darlin’…… you are so close to my age (im 34, with 2 kids, their dad went history 13 years ago, never heard, nor even know where he lives til this day).

Just wanted to let you know you are in our thoughts, prayers and positive energy your way. Keep your chin up, and see if you can call around for info on programs that might be out there that could help you. 🙂

Lots of hugs & love from tennessee!!!

tennille 🙂

[SweetFeather]

Scared, 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.htm

Do 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, SweetFeather

[SweetFeather]

Scared, I found this I thought you’d be interested in:
http://mastcellmaster.com/documents/Brain-Inflammation/Brain-Res-Rev-mast-cells,-migraines.pdf

Hydroxyzine 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.

[SweetFeather]

Stress, 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.pdf

On 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.pdf

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