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Everything posted by SeattlePotsy

  1. non-epileptic seizures, tremor, dystonia like symptoms
  2. Non-epileptic seizures, tremors, dystonia like symptoms
  3. the benadryl can stop my tremors/ non-epileptic seizures and dystonia type symptoms…also decreases the adrenaline surges and can help my vomiting. thanks for your replies!
  4. Do any of you take Benadryl and find it helpful? I have non epileptic seizures, tremors, surges,etc and I have found Benadryl to be the most helpful with the fewest side effects (used to use Ativan and be so out of it all the time). Just curious if anyone else has had a similar experience…?
  5. Thank you so much for responding! It really does help to know we are not alone and so thank you so much (almost made me cry haha…one of those days
  6. I have noticed that my symptoms have morphed a bit over the last 4 years. Recently when I am not feeling well it seems to affect my emotions and how I interact with people more than before (very easy overstimulated/irritable, quick to anger, etc). I have also had these times when I will be interacting with someone and a normal reaction would be to be a little annoyed or slightly angry but I get a huge surge or adrenaline and feel RAGE! I have to leave the room and I have so much adrenaline that I feel like I am going to explode…and sometimes my body just starts crying (it's weird because th
  7. yep that has totally happened to me! I have found that sex can sometimes be a trigger but other times can actually make me feel better…maybe it's a blood flow thing ha
  8. I have POTS and have tremors and non epileptic seizures as one of my primary symptoms. I also get GI issues, vomiting etc. I try to eat smaller meals more frequently as I have noticed symptoms following meals as well. Fluids, relaxation/diaphragmatic breathing, and sometimes oral IM or IV Benadryl seen to help me.
  9. I actually seem to be better in the morning and worse in the afternoon and evening...that has always been the case for me and I feel like most people are the opposite.
  10. i have seizures but they are non-epileptic and from my POTS...I can tell when they are coming because I get large surges of adrenaline in my chest. Usually by BP and heart rate go up quite a bit too. I am not unconscious but sometimes very out of it and can't talk. I hope you can get an EEG soon and figure out what is going on. Sending thoughts your way
  11. That is really interesting about the medical profession! I am a nurse too and worked on a post op surgical floor when my symptoms started. This December will be three years sense I have been able to work. I too would love to find a way to use my skills but the waxing and waning of symptoms does make it difficult.
  12. my symptoms started 2 weeks after i got the H1N1 vaccine...and i remember feeling strange soon after getting it...many docs i have seen think there is a possibility of a connection...
  13. After being denied twice i got approved! wish the best for you all!
  14. AWESOME! I have mine next week and I am super nervous...hope it goes as well as yours. Keep us posted!
  15. Thank you everyone for your response....it really helped me feel less alone:)
  16. I have had POTS for 2 and a half years and have had many doctors (especially in the beginning) say that my symptoms were just from stress and purely psychological. I have GI issues (nausea and vomiting) and body tremors and non epileptic seizures as part as my symptoms and I was told today that they are just psychological and not related to my POTS. I struggle with this because I know stress plays a role in POTS symptoms but interactions like this one make me second guess myself and my pyche. Anyone else had an experience like this? What helped you to come to a conclusion about your symptoms a
  17. So happy for you! It's awesome to read about success!
  18. I have the hyperadenergic type with full body tremors that can look like epileptic seizures...not sure if it would help but thanks SO much for your replies! Been so curious about what others have heard/experienced...
  19. Just wondering if anyone had ever heard of or been treated by Dr. Kyprianou in Texas? I guess she uses biofeedback and has had some success with dysautonomia patients...http://www.potstreatmentcenter.com/#!
  20. seizure like episodes that start with dizziness, tachycardia, surges in my chest, facial flushing, cold extremitites, involuntary muscle contractions/myoclonus, can't talk, blurred vision, ...usually ends with vomiting
  21. Just wondering if anyone has tried homeopathic treatments for POTS symptoms and if it has helped..?
  22. full body tremors/ physiologic non-epileptic seizures, vomiting
  23. I have the same thing happen!!! My heart starts pounding, feel light headed, blurred vision, difficult to speak, extemities cold, face flushed, full body tremors that look like seizures...the autonomic doc at Mayo described it as a sort of autonomic storm (though not as severe as the typical autonomic storms accociated with brain trauma). I also vomit with these episodes. I often take ativan and sometimes phenergan to help them stop...but that definitely leaves me feeling wiped out. Fluids definitely do help. I have found 0.3 of Florinef to be helpful but still in seach of the perfect dru
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