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caribou11

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Everything posted by caribou11

  1. I had a tilt table done.... and I don't really get what the point of it was. I was strapped onto a table, they straightened it up and let me stand there for 30 minutes while a machine measured my blood pressure and heart rate. There was a woman who sat there and watched me and I was supposed to tell her if I had any symptoms (which I didn't) and then she would write them down. They dimmed the lights and I couldn't talk... it was sooooo boring! After that they injected me with isoproterenol which made my heart rate go up like crazy. I felt an adrenaline rush but none of my "problematic symptoms". I stool for 20 minutes with that. I was told my test was normal... but I was told to get a Tilt Table by Dr. Grubb which I couldn't do to travel/time/money/etc... so I just went to the local Dr... so not so sure about the success of it Anyways I had to ask the Dr. about POTS after the test... which he said no I don't My symptoms that I am struggling with are basically random episodes of vertigo/ataxia with slurred speech and brain fog (there is more but I won't go into the details). I do have EDS type III, but Dr. Kula at TCI didn't think my neurological issues were from Chiari and Dr. Francamono in Maryland can't find instability on my MRIs... so no one knows :/ - I have to go back for re-evaluation after I deliver my baby (I'm 6 mo prego). So I guess I am not sure why the Tilt Table is so dreaded... unless you have problems standing... but that was my experience.
  2. Thank you all for replying... I have been evaluated for Chiari but don't have the typical "Chiari headaches" so didn't get that dx... which I guess is good cause I don't really want brain surgery... I don't shows signs of MS on my imaging so I am hoping that that isn't it!! I am hoping that this is all diet related... if its hormone related is there anything to do about that?! My symptoms did get WAAAY worse after my son was born... My son was born in Aug and I nursed him until 10.5 months. My period came back at 7 months and I had a slight increase in symptoms. When he was 3 months I went non-dairy b/c I discovered he had a milk sensitivity. He grew out of it around 10 months and I started introducing dairy again. Also during this time I was in a minor car accident, with no significant whip lash, but I still think it could have affected me a bit (I wasn't evaluated by a Dr.). It was after this that my episodes became daily and I couldn't function. I had to walk with a cane and sometimes had to be carried by my husband. The symptoms have slowly faded but seem to come back just not as intense. I am now pregnant (23 weeks)... and have felt pretty well so far, but I am terrified of whats going to happen after this one is born! When I went non-dairy I had to eliminate almost all processed foods as my son would have a reaction to chicken nuggets with whey in the breading... so I am n assuming I also cut out a lot of gluten as well. I am thinking of going gluten free soon. Also I am planning on going dairy free before next baby is born and then I'll introduce milk to see if she is sensitive too. We couldn't figure out what was wrong with my son till 3 months... and I felt horrible knowing all his crying for 3 months was because of my diet! His dr had no idea... it was from forums like these that I figured it out... The internet is so great sometimes! Thanks for all your responses and support... you all make my life that must easier
  3. I have Ehlers Danlos Syndrome Type 3 (Hypermobile) and just recently was dx. I am 26. When I was 13 I had an episode of vertigo that lasted just seconds but dropped me to the floor. Ever since that day I continued to have random episodes of vertigo and/or ataxia like symptoms (disequilibrium... couldn't walk straight). The episodes came maybe once every 3-6 months for most of HS. So I could work around it. (Dr. told me it was stress caused) During college my episodes got worse and more frequent. Besides just ataxia I also had slow processing, slurred speech, saying wrong words, and it lasted sometimes from 1 min to an hour with disequilibrium lasting until the next day. Fast forward a few years I am married, I have a 1 year old son... I started having my episodes almost daily. Plus now my knees were buckling and sometimes my legs felt so weak I couldn't walk (when I wasn't in an episode I had full muscle strength). Also I started feeling this weird sensation in the back of my head. Sometimes I feel like I am going to pass out black (rarely)... most times my body feels like it is losing control and I am awake but collapsing. It is a terrifying experience. I have been to The Chiari Institute in NY and was not given a dx of Chiari because I don't have headaches. My cerebral tonsils are low lying (1-2 mm herniation) and I have a very mild CSF blockage. Dr. Kula referred me to Dr. Francomano for EDS. She confirmed that dx but could not explain my neurological symptoms. I do not show any neurological problems when I'm evaluated in the Dr. Office except that I can't hold my balance with my eyes closed. Can anyone relate to this? I'm not sure where else to go for answers... Tilt table was negative for POTS No heart problems, no seizures, no strokes, no ms... Only possibility that is still on the table is Episodic Ataxia. Which I have to get a genetic test for and the lab that my neuro had me call doesn't test for it... lol Another idea I have from reading these forums is Gluten Ataxia... very new idea to me, but I'm totally up for going GF if I get my life back. Can anyone relate to these issues/offer advice or insight? Any Drs you'd recommend seeing? Thanks so much!!
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