My story is super long - sure you all know how that is, but I'll keep it as brief as I can

When I was 15 I started having random "episodes" which in the beginning were just vertigo/ataxia. They would last a few seconds to a couple hours. My mom took me to the Dr. who said it was stress related (haha). I did end up getting an MRI during H.S. which was normal. Neurologists thought I was having weird migraines and I tried a few different meds but nothing helped.

During college my episodes became more frequent, but not frequent enough to keep me from doing school well and playing on the volleyball team. But my episodes changed and were lasting for longer periods, even 2 days. I had brain fog, couldn't think sometimes, sometimes would feel very silly and couldn't talk well (say the wrong word, slur words). I very much looked drunk even though I never drank.

I was married right after I graduated and within 2 years we had our first baby. My episodes were more frequent than they had been in college, but Drs couldn't figure me out. I went to more neurologists and a couple ENTs. When my son was 3 months we discovered he was sensitive to milk protein so I changed my diet as I was breastfeeding. When my period came back I had about 7 days of episodes but it gradually wore off. B/C my episodes were making it difficult to work (I was a nanny) we were trying to find a medication to help control them. The ENT put me on a med and I had to stop breastfeeding, meaning I could eat dairy again. I crashed my car into the curb due to an episode and I attributed worsening of symptoms to my accident.  My episodes progressed from vertigo/ataxia to severe weakness and severe bone/joint pains. I walked with a cane for 2 months. I had times when my entire body would collapse (like I was fainting, but completely conscious). I also had terrifying breathlessness... felt like I was forgetting to breath and that I couldn't get enough oxygen. (Not anxiety related... )

After talking on tons of forums I was accepted into the Chiari Institute for an evaluation. I do not have Chiari, just low lying cerebral tonsils with some overcrowding. The Neuro there suggested I see Dr. Francomano in Baltimore for Ehlers-Danlos.  I saw her and she confirmed I had EDS type 3.

My "episodes" were then attributed to possible neck instability, but I was then pregnant with baby #2 so there wasn't much I could do. During this pregnancy I had terrible episodes. Interestingly enough the last month before I was due I went non-dairy preemptively in case baby girl had milk allergy and felt a ton better! After my c-section I was giving pain meds that made me terribly dizzy (just like an episode). Then my daughter ended up being allergic to not only dairy, but soy as well. We are still trying to figure out her issues (currently 7 months old). Anyways we noticed that whenever I accidentally ate dairy and she reacted... so did I.

I stopped breastfeeding her in Feb as she had to be put on Neocate. I resumed eating dairy for one evening and within 24 hours had an episode. We tested it again a week later - same thing. I now avoid dairy.

Lately I am reacting to more and more things and my episodes are lasting longer and longer. Because I have EDS I frequent EDS forums trying to figure myself out - mast cell activation disorder is discussed a lot. I decided to take Benadryl at the onset of symptoms... and it freaking worked!!! I was shocked that over all these years Benadryl stopped my episode from progressing!

So at this point I am reacting to more and more things and my episodes are getting harder and harder to control. I am now avoiding all alcohol, orange juice, dairy... and still don't know what I reacted to last night...

I talked to Dr. Castells on the phone, and she told me to get 3 tests which I did get, but the hospital was ridiculously slow in getting them and they came back normal. I have 2 babies I'm taking care of at home. My husband works (he is a post doc studying breast cancer) but I can't even if I wanted to b/c I can't function reliably enough :/

I need to find a Dr.... I am in NW Indiana. I would love to travel to Boston to see Castells but I don't see how we can financially afford that right now.

Well - thanks for reading, I'm sure I missed tons of stuff, but oh well - any have an insight or advice? Thanks so much

I haven't yet... on my To Do list!!

Oh and I did test negative for skin prick allergies