Jennij

Thanks for your support. I know that worrying is no help and I'm trying to keep that in mind. I think the more knowledge I have going in as well as the more communication I feel I have with the surgical team the better. The surgeon I thought I was going to go with seemed to think it wouldn't be necessary for me to meet with the anesthesiologist ahead of time. This makes me uneasy and now I have less confidence in her as my surgeon. How has it worked for all of you? Were you able to be put in touch with the anesthesiologist who would be doing your surgery ahead of time?

Please if anyone can give me advice I would greatly appreciate it....I need to have a hysterectomy for fibroids and am very worried about surgery. I am really sick with dysautonomia and react very strongly to my body having anything foreign/painful happen to it. I just had a couple questionable skin spots removed on my back and the soreness from the skin shave biopsy and my bodies negative reaction to the adhesive from bandages and I'm having a full blown dysautonomia episode. I'm petrified of how my body will handle major abdominal surgery. Please - I'm desperate for answers - how does anyone get through this?? I've never had anesthesia and don't know how I will handle it. I do know that most of the meds I've ever tried for pain make me really sick. Thanks to you all for any advice.

@ E Soskis: you said "By the way, my uterus was the size of a 6-month pregnant person yet, the machine had no problem removing it via laparoscopy technique." That's what they're saying my uterus is as well and they said in order to remove laparoscopically it would be with morcellation, is that what you had? They said that a vaginal hysterectomy was not an option due to the size of my uterus although that's the one I would prefer the most.

Thanks again. Good tip to double check that POTS is clearly written all over my chart. My neuro is aware to do that but I'm not sure how spelled out it is to the gyn surgeon/anesthesiologist. I will make sure to do that. Good luck to you!

@rgny- thanks for your reply. I'm also having a hysterectomy (open abdominal) and am worried about blood loss. An hour early for IV fluids is a good idea. What kind of hysterectomy are you having?

I have to have major surgery for which I will be under anesthesia and I've never had it before. Just wondering if anyone had thoughts/experiences on what this is like for someone who has dysautonomia.

I know people have mentioned before how many grams/teaspoons of salt they take in a day, does anyone have measurements like this to share?

I'm taking Florinef and am wondering how much salt I should be taking in every day. Does anyone have knowledge of this?

Has anyone tried any of the others?

Thanks so much for the input so far. @looneymom, that's a good suggestion for how to search for research!

I'm wondering what people's experiences have been taking SSRI's. I've tried doing a search on the forum for this question but there's so much material spread out. Does anyone have thoughts on these meds?

Another one of the meds my doctor has suggested is Mestinon. I'm currently on Florinef already. Is it ok to take them both at the same time? Thanks for your input.

I've tried gabapentin and it had the opposite effect on me and it kept me awake all night. I know it's all trial and error but it helps to know other peoples experiences.

I've been prescribed Lyrica for my nerve pain and am wondering if anyone is taking or has experience with this medication. I'm always wary of taking something new and I trust and appreciate the insight from members of this forum.

I'm confused....my doctor suggested that I try Strattera or Effexor for my POTS symptoms. But my partner is on Strattera for AD/HD and often experiences side effects similar to some of my POTS symptoms (fight or flight response, sweating, flushing, BP irregularities). If I understand the drug correctly, it's blocking the re-uptake of norepinephrine and therefore staying at the synapses where it's needed for AD/HD. Why would that be helpful for my potsy stuff. It seems to me like I'd need something that does the exact opposite, right? Is there such a med?

I haven't explored the Effexor suggestion but I know it's an SNRI which I think blocks the re-uptake of seratonin and norepinephrine. Any thoughts would be greatly appreciated.

I tried taking Zantac and Claritan together today and the claritan (i'm pretty sure) made me feel like I was on speed. I still feel it in my system after 12 hours. Do other people have this reaction?

Thanks for all your input. I'm curious to know more about Doxepin. It seems like that's what's most commonly used in MCA issue types. But then again it's a tricyclic which is not recommended for POTS. Any ideas on this one?

Thanks. My confusion about Doxepin though is isn´t that a tricyclic antidepressant? I thought that those were the type POTS patients should avoid according to the list on the DINET website http://www.dinet.org/what_to_avoid.htm

I've tried searching past posts and can't seem to get the right info....has anyone been prescribed antidepressants for POTS and/or MCAS? If so, which ones work and which ones don't?

I just read back through old posts on this and it seems to vary as to what form of licorice people have tried....liquid, capsule, tea, lollies. Any thoughts on which is most effective or is it up to what I tolerate/experience personally? One naturopathic doc said its not something he would rx to me since my cortisol levels are relatively normal. He's not aware of my low blood volume/pooling issues however. I was prescribed Florinef but didn't tolerate well so I'd like to try licorice to see.

Does anyone have any thoughts about Licorice Root? I want to buy it at the store, what type should I buy? Thanks

I have a second opinion scheduled there in January. Haven't heard much about anything here though. There seems to be someone at Boston Medical also. Where were you diagnosed?

I was originally diagnosed at UMass Memorial.

Hey Tracey,

Have you looked into being seen at UMass Memorial in Worchester. They have an autonomic lab as well. I'm interested to hear about your experience at BI though. I live in New England and have struggled to find adequate knowledgeable docs.

Jenn

I was just told that I have high potassium levels. Does anyone else have this?

Hmmm, I guess no one has any info on this. When looking for a new cadiologist, does anyone have ideas about what I should look for in their bio?

Thanks again