Another seizure.

[CallieAndToby]

Well I've been getting worse. Last night I was laying flat on the couch with my legs propped up/elevated, but everything went black and my mom happened to be there (she's an RN for 25 years) and I told her and she said I went into a terrible seizure. I know it's because I'm not getting blood flow to my brain mainly because my head and ears start buzzing, I have all this pressure in my brain and behind my eyes, and everything goes black and seeing stars and double. 

I'm basically bed bound at this point but still blacking out and seizing. NP Karabin did order some labs but when we went to the lab they didn't want to deal with it because it involves me lying down for 30 minutes then sitting up for 30 or they kept saying walking for 30; the lab also said I was supposed to bring my medication and take it after the lying down part and I told her when getting autonomic testing the patient does NOT take the beta blockers, any of the medication that involves the autonomic nervous system, etc. Anyhow, they just told me to leave and come back another time. My other concern is that I simply cannot sit up or stand for more than 5 minutes so I don't know how to do this testing...... I was supposed to get the testing then try guanfacine. 

I know that UAB has a new and advanced autonomic testing lab but I don't know how to get referred as I have asked my PCP several times already. Also, can I actually get testing when I'm bed bound? I have a positive TTT from 10 years ago and that's it, my local cardiologist just really pushed compression stockings and gatorade and no further testing; I really wish I'd been sent to one of these specialty places back when I could stand and sit. Any advice is welcome. The seizures are extremely frightening, yea.

The most helpful things in my experience have been saline iv's and ivig which was only a 6 month trial when I was much younger for a different diagnosis, but it did help the dysautonomia. Getting ivig approved is extremely difficult b/c it's just limited and very expensive and I would need a port for the saline iv's and ivig. 

 

[Pistol]

@CallieAndToby22 - that is strange that the lab sent you home. If they do not know how to do it I would look into a bigger lab/facility or complain to the lab that would not do the lab. I had mine done in the facility where my specialist practices. I believe if you cannot tolerate walking they might just do whatever the most os you tolerate - even if that is sitting up. I had to lie reclined in a recliner in a quiet corner of the lab and after they took my blood after 30 minutes I walked around 30 minutes ( I still could do that back then ) and returned to the lab to have my blood drawn again. I would either try a bigger hospital/lab or - as I already said - ask for the manager of the lab you already tried. If Beverly ordered the lab it is important you have it done correctly, since her treatment options would depend on the outcome of that test. 

[CallieAndToby]

I went to the lab today and a young lady was much more helpful. I did my best but I can't walk around. Hopefully it renders some results. There are only 2 labs here and I have nowhere else to go. I have family in Jacksonville, FL so naturally we have been looking at for potential places to live there (to move) and I also like the Tampa Bay Area.