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About Trev425

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  1. Def sounds like presentation for Lyme. Long time to be on antibiotics though. There is a post-lyme syndrome/condition that is poorly understood at this point. You getting better at all? Should resolve over time. My $.02.
  2. I was Rx'd lyrica first,but could not get prior authorization from my insurance company, so it was going to be $650 if I wanted to pay for it. I tried gabapentin and it was only $15. The difference is really staggering. I think the way it works is that you try an alternative first, like gabapentin, for a certain period of time (like 2mos) and once it proves to be ineffective then the doctor will tell the insurance co to authorize the lyrica.
  3. It's so different for everyone so you won't really know until you try. I tried 900 mgs of gabapentin for suspected neuropathy. It didn't really do anything for me so I stopped. I don't regret giving it a shot. I figured it was worth the potential upside with minimal potential for downside based on all the experiences I have read about.
  4. I haven't been diagnosed with EDS, but I did bring it up previously as I have some hypermobility symptoms. He seemed dismissive. Now that I am more educated through forums such as this one, I am going to revisit it in a couple of weeks when I see him next. He helped commission a study on the condition, so I am interested in his perspective. gofl1 - glad you are making progress let us know how it goes for you.
  5. I think it's worth talking to your Dr. about. It stands to reason that a vasodilator could be causing the flushing.
  6. Perhaps I should have mentioned that I don't have POTS, but the blood pooling/autonomic issues seem to overlap with the POTS folks on here. During much of my twenties I had chronic anxiety and my heart would constantly beat fast and I had a host of anxiety related issues (IBS, depression, insomnia, etc). However, as tough as it was I was highly functioning and those issues resolved over time. I could write a whole story just on this battle. I am wondering if my nervous system was just doomed to fail from the start :/ I had many blood tests, but all tested negative. All of the major viruses, ba
  7. Thanks for the responses. I find just talking on these forums to be cathartic. From what I have gathered, true erythromelalgia seems to have a sensory component. I am also not in the excruciating pain that folks describe. I think if I didn't have venous pooling then I wouldn't have the problem at all, so I am wondering if there's a difference between the sensory condition or just general autonomic dysfunction. The treatment really seems to be tied to the underlying cause. If it's some neuropathy then you treat the nerves (gabapentin, etc). If it's autoimmune then you address the inflammation.
  8. Hi All, I noticed the poll on blood pooling, and I have a related follow-up question. Does anybody else got hot flushing due to the pooling? If I walk or exercise my feet get really hot and red and it's not pleasant. It's worse in the evenings. Just wondering if everybody with pooling gets this. One Dr. said erythromelalgia, but my neuro says it's just related to a virus which caused autonomic issues. Thanks! -T
  9. I don't have POTS, but I did have a cortisol test. My understanding is there are different tests. Mine was a blood test and I had to take it first thing in the morning - the second the lab opened at 7AM I was there!
  10. Lyme diagnosis can be fairly controversial. I went through the Lyme gauntlet myself so I speak from experience. I also personally know two people who have/had Lyme and have talked in detail about their experiences. A few things worth considering is whether or not you had a bulls-eye type rash at the site of the tick bite. If so then this is a strong indicator of infection and you should have treatment regardless of test results. Other typical symptoms are a flu like illness and joint pain; although symptoms can present differently in different people. It is also worth considering the time betw
  11. Yeah - I know the feeling. Sometimes it's more of a "flush" feeling. Other times it's like a "microspasm" feeling. Doesn't hurt, just uncomfortable.
  12. Since my issue started I have it in my left ear. Pretty much only at night and it's definitely in my left ear only. The way it sounds reminds me of the sound a modem used to make when using a dial up connection if that makes sense. I sleep with a TV on because I can hear the TV over the ringing. I also hear it less if I sleep on my right side as pressing my ear against the pillow makes it much worse. So strange.
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