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About jem15

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  1. Thanks for the info! I'll pass it along. I know I keep telling her to make sure she mentions to her doctor her OH history, not just that she's dizzy. And I want her to eat more fat!! Funny that was mentioned. She's afraid of gaining weight and is always watching her fat but I feel like the baby might need more fat;-)
  2. Hi, I'm posting on behalf of a friend. She had orthostatic hypotension in highschool and then it eventually went away. She's now 35 and about 8 weeks pregnant and her OH symptoms have come back. I've heard this could happen. Her main symptoms are dizziness and her vision blacking out when she stands or sometimes randomly after she's been standing for a little. I didnt know if she could do the whole increasing salt thing when pregnant, or ha, really anything that could help her when preganant. Anyone go thru this? Any ideas on what might work? Right now I just told her to change positions slow
  3. Hi, You guys may have seen this already, but I just saw it today. A new dys. group seems to have formed called Dysautonomia International. They're having a kickoff event in NYC at Lucky Strike on Oct 26th, tix are $40. I was just curious if anyone knows anything about this group and if anyone is planning on going to the event. Here's the Facebook link for more info..(if it doesn't work, let me know, I can try and paste the body of the text) https://www.facebook.com/events/498491563497388/
  4. It seems to me from the research I've done and from my own personal experience that everyone's experience with different birth controls varies greatly. So what might be great for one can be awful for another. I too just recently had to decide to go back on, at least for a 3mo trial, despite how much I hate the possible side effects. I'd be on it for about 8 yrs due to irregular periods and worsening of my POTS symptoms before/during menstruation, Seasonique was the last one I had been on prior to stopping. I didn't seem to have any problems with it at the time, and it was better for me not t
  5. Yeah, like others have said, sometimes when something else is off/going on, I feel like that, like something is really wrong. Also, just being sick for 17yrs now and slowly getting worse from year to year, I wonder what will keep happening as I get older. I already cant tolerate many meds, and keep getting new symptoms or worsening of symptoms that dont go away. So yeah, when you say "How can new symptoms STILL be coming years later???" .. i hear ya... in fact just today i went to the ENT due to having the sensation that something is stuck in my throat on the one side, for like 6mo. and funn
  6. Naomi, Ha, yeah, I'm sure a Wiggle would have a very conditioned heart that's large enough to support all that Wiggling'-) Bren, Yeah, my case is somewhat similar it sounds. My heartrate increases for ex, arent that severe, and arent always consistent, sometimes they catch it, sometimes they don't. Yet despite the fact testing doesn't pick up things that are "severe", my symptoms are severe as they have grown worse each year and continue to limit my functioning, and I'm now to the point where I can't work or drive. My doctor said too that severity of symptoms doesn't always have to correlate
  7. I still struggle with this issue, though I do all the things you're "supposed" to do, writing stuff down, doing your own research, being your own advocate, being straight forward, though polite, in asking doctors what i need/want from them and if they can/can't help me with that... etc..etc...I basically "interview" doctors before choosing one to put on my "team".. and though I've at least found nicer ones now, who listen, and are willing to take my case, and at least fill out disability...in my 17yrs being sick I have still never met any who are really fighting for me, or really trying to hel
  8. Bren, In regards to what you posted, my understanding of all the terms is that there are several conditions that fall under the broad category of "dysautonomia" or "autonomic dysfunction". "Orthostatic intolerance" is a type of "autonomic dysfunction", where the body has trouble responding to/regulating itself in regards to upright posture, hence the "orthostatic" part. Orthostatic intolerance can result in a condition like "orthostatic hypotension" , where your blood pressure drops when you stand up, or it can result in syndromes like POTS where your blood pressure may stay normal when u
  9. Darn, I just tried DDVAP and couldn't tolerate it. I'm also sad about this cause for the short time I was on it, it seemed to be starting to help with the nightime peeing. I tried it for a week, and towards the end of the week, got extremely fatigued, where i felt like I couldn't even sit up. Then I stopped it for a week, to see if it was the med or not, and then went back on for two days.. the 1st day, intense fatigue came back, and the 2nd day I had a super bad vertigo episode that lasted for hours! I haaate that symptom cause not only is it incapitating during it, but then afterwards for
  10. My symptoms are disabling to the point where I can't work or drive now. However, my doctor wouldn't say i have "Severe POTS" I don't think, he said I don't have autonomic failure or any of the known conditions that can make the condition progressive, etc.. yet my symptoms worsen on their own from year to year. My HR isn't always increased by 30beats, it's inconsistent, some days they catch it, some they day.. I can still have some symptoms lying down etc... so I dont have crazy high HRs, I don't pass out, just feel faint.. and my doctor agrees you can still have these symptoms in absence of th
  11. My situation was a little reverse to yours, but I'll share some stuff in case it helps. I qualified with my company's LTD plan, but then they also had me apply to SSDI (cause if SSDI pays you, they dont have to pay you as much). SSDI got denied a few times before going through. The LTD co. assigned me free lawyers to fight SSDI, ha, and it still got denied the first 2 times, and then was going to a hearing, and two days before, they called me to cancel saying it finally got approved. Anyway, the lawyers they gave me were part of a national group that does disability law called "The Advocator G
  12. thanks for posting both articles. so good to hear another dr reply to this and address some of our concerns. now i wish the autonomic specialists would do the same. And then interesting to hear Levine's reply.. I'm glad at least some discourse/exchange happened.. i just hope it continues and gets out to the media.. even with his explanation, though I'm glad he tried to clear some things up, i'm still not satisfied. I think whether or not he meant for it to happen, it's out in the media, people are being misled. Responsible thing for him to do would be to explain to the media outlets that it's
  13. Another thought,... anyone see any of the main "pots specialists"... Dr.Grubb, Dr. Raj, anyone at Mayo? or even Dr. Stewart..etc... I feel like if POTS ever gets press.. it's all "grinch syndrome" and exercise will cure you and it's a "heart condition"... where are the other doctors who know this is not the case, at least, not in all POTS patients? Can/will they somehow speak to this and at least offer another part of the story? Ha, any patients think they can get them to comment back to ABC news? It's so damaging when misleading press gets spread.. I know we're all happy for awareness.. bu
  14. I just read the article bout pots/astronauts/ small heart,etc.., and I agree with dizzyde that we should write in and tell them how they misrepresented pots a great deal. I'd give anything for a "cure" n if it was that easy n curative 4 everyone we'd all be doing it and our drs would all recommend it. I get so excited when I hear pots is in the press, then get completely disheartened when it sounds like everyone can be cured ndoesnt explain the myriad of autonomic symptoms. It seems 2 me, n maybe I'm wrong, but it's only Levine proporting the heart theory n that most drs consider it an auton
  15. Yes, thanks for sharing. I've always been so curious what exactly Mayo does with patients like us cause it's so impossible for me to get there, just dont have the physical or financial ability, but if they were miracle workers, and had some secret cures up their sleeves, I'd desperately try to find a way. It looks like I've had most of the testing that they did with you, and I've already tried all the basic POTS meds.. betablockers, midodrine, mestinon, florinef, and compression stockings, fluids, salt, etc.... and unfortunately nothing has provided any relief.. so I'm not sure that Mayo would
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