Jump to content

tigerbomb

Members
  • Content Count

    25
  • Joined

  • Last visited

Community Reputation

0 Neutral

About tigerbomb

  • Rank
    Member

Profile Information

  • Gender
    Female
  • Location
    Philadelphia

Recent Profile Visitors

552 profile views
  1. Thanks, all. Kelly, I think that makes a lot of sense. I get reflux along with the other symptoms too, but it doesn't feel like acid - just whatever I've been drinking (TMI?). It's interesting that you mention getting a good night's sleep - I was pleasantly surprised by how well I slept last night! I still was woken up by my usual 6 am gastrocalypse, but was able to fall back asleep afterwards. Usually I'm way too wired.
  2. This might be a dumb question I'm still fairly new to POTS & gastroparesis, and I'm hoping that someone with a bit more experience might have some tips and tricks for staying hydrated when your stomach isn't emptying. I know that some people do IV saline, but is there anything less invasive? (I woke up feeling extra-symptomatic today. I've drank about 24 oz of fluids so far, and it's all just sitting in my stomach, making me look vaguely pregnant. Meanwhile, I'm still thirsty)
  3. Huh, I've been having weird 6 am symptoms too (give or take an hour). I wake up with nausea and abdominal cramping, and have to get to the toilet ASAP (if you know what I mean...). Sometimes I'm hot and sweaty too. No headache though. It usually subsides after an hour, regardless of whether I eat or drink anything, which makes me think my 6 am symptoms are probably not dehydration or hypoglycemia. I also used to be a morning person. Ugh indeed.
  4. Not sure. I developed POTS over the course of about 6-8 weeks last fall. Initially, I just noticed an increase in nausea, reflux, and fatigue, then increasing dizziness and anxiety. I know that EDS is associated with dysautonomia, but my previous symptoms were just GI and alcohol intolerance. So, I feel like something must have changed to make my heart get in on the fun. I have some markers of autoimmune disease, but nothing definitive. I also wonder if spending a year with under-treated chronic pain could have contributed to a hyperadrenergic state...
  5. I know a woman with EDS who had a bad run in with HB1. She wrote a bit about it here: http://paindr.com/heroin-hydrocodone-buprenorphine-prop-aganda/#comment-2701.
  6. Awesome. I'm definitely going to go ahead and push for the Mayo panel now.
  7. This is very interesting to me. I started seeing an allergist/immunologist this summer for an increasing number of bizarre allergic-type reactions. I have EDS and was worried that my mast cells were misbehaving. In the course of his initial blood testing, he found signs of autoimmune disease (severely depleted C3 & C4 levels), but nothing specific. My rheumatologist was fairly certain it isn't something rheumatological, and my gastroenterologist was fairly certain it isn't something gastrointestinal. Shortly after that, I started developing an increasing number of POTS (and other autonomic
  8. That theory sounds a bit "unconventional" to me It was once thought that POTS patients were more anxious, but current research does not support that: That being said, plenty of people have found anti-anxiety meds helpful for controlling POTS symptoms. As someone who had a pre-existing anxiety diagnosis (and had been on an SSRI for years) when I developed POTS, I am sure that these random adrenaline surges aren't helping my mental state. And my POTS is definitely worsened by both physical and mental stressors. So it's not a cut and dry relationship at all. So, IMO, anxiety can be a part of th
  9. This is a new symptom for me. Exciting! So far, it has happened a few times when I am extra-tachy, and went away when I lay down. I wouldn't be surprised if it was blood pressure related for me.
  10. I've also heard criticism of the Beighton score too. It's ok for a quick screening, but isn't the whole story. Like Chaos mentioned, it ignores the large joints. Plus, women tend to be more flexible than men, and younger people are more flexible than old people - regardless of whether they have a connective tissue disorder or not. If a muscle is very tight, it can mask hypermobility in a nearby joint. I actually have several HYPOmobile areas, because my muscles are so tight and knotty from trying to support the unstable joints. Osteoarthritis is also very common among people with EDS, and it c
  11. According to the Villefranche diagnostic criteria, pain would support an EDS diagnosis but is not required. There can be a wide variety in the expression of the EDS genes, even within families. So, for example, I have a lot of pain and a positive Beighton score, but my brother doesn't. However, there's a good chance he carries the EDS mutation - he's had his lung collapse spontaneously twice, he has a somewhat prolonged bleeding time, and his hands are far more flexible than mine. That being said, there's not really a reason for him to pursue an EDS diagnosis right now. I needed a diagnosis so
  12. I have CEDS and POTS too. Welcome to the club! I've noticed that there's a lot more written about HEDS and dysautnomia than CEDS and dysautonomia. I don't know if it's because CEDS is less common, or if dysautonomia is genuinely more frequent in the HEDS population. Regardless, the stuff that I've read about HEDS + POTS seems to apply to me too. I'm also investigating mast cell activation due to some weird allergies, but it's a slow go. I started seeing an allergist/immunologist shortly before my POTS got bad, and had some preliminary testing done. There was no evidence of MCAS (which doesn't
  13. I was recently prescribed Mestinon too. I've been increasing the dose very gradually and just got up to 60 mg 2x/day today. So far, no difference, but I'm going to give it some time. I'm having abdominal cramps, but that's fairly normal for me
  14. I've actually found it really helpful to have a psychologist on my treatment team. That way, when someone suggests that it's all in my head, I can say, "No it isn't. I already have a psychologist and he says that I'm anxious because I'm sick. I'm not sick because I'm anxious." In all seriousness, my therapist really has been helping me come to terms with this whole disease and disability thing. He's a good dude.
  15. I was recently diagnosed with POTS via TTT. I requested to have my catecholamines checked at the same time, but no one at the testing facility had ever heard of that, so I just had the plain ol' TTT. It showed that when I'm upright, my heart rate oscillates between 100 and 140. My resting heart rate is around 80 (it's always been on the high side - even when I was still running, it never went below 70). My blood pressure stays more-or-less the same (though it's also higher than it used to be). My legs don't turn red or mottled or purple. I feel tremulous and anxious when I'm upright too. So, I
×
×
  • Create New...