Tobiano

For those on IV saline who don't mind sharing some experiences (or feel free to PM me)...

1) How frequently do you get infusions?

2) What rate?

3) Bolus or pump?

Thanks!

So glad to hear that you got an appointment. Good luck tomorrow. I hope it leads to answers. Sending positive vibes your way

Thanks for posting Alex!

From what I understand from my Cardiologist, the drug is currently not approved in Canada and it is also not available through the Special Access Program. I know there have been posts about ordering the drug through Canadian pharmacies. I would just look into this carefully and proceed with caution if this is the route you decide to take, given the above information. All the best.

I'm sorry to hear that too Racer. Perhaps you could request your medical record to help you piece together what happened there.

I have since done more investigation. The drug is not currently approved in Canada.

I can relate to this... happened in a very busy grocery store yesterday. I'm sensitive to loud sounds, bright lights, crowded places etc. I described a bit about the visual issues I experience here http://forums.dinet.org/index.php?/topic/22320-visual-issues-hard-to-explain/

My meds have helped quite a bit with this... I had to stop them a while ago for tests and noticed a huge increase in my sensory sensitivities, which have decreased again now that I’m back on my meds. Other than that I haven’t really found anything that helps substantially. At large events, I try to sit near the edge of the room, rather than right in the middle of crowds. I also try to face a wall rather than a large window or the crowd. It does take a lot of effort not to bump into things, because of the visual issues, and also a lot of effort to carry on a coherent conversation in these types of situations. I end up taking frequent breaks. Hope the wedding goes well tonight.

I also take naps. Sometimes tiredness just hits and I have no choice. I will often feel better after a few hours. Sometimes I can ward off a bigger episode if I just try to sleep during my very symptomatic days.

I tried to eat many small meals during the day. I also take liquid meal replacement. If I don't eat enough I'm symptomatic yet if I eat too much I'm symptomatic.

I agree. After a reasonable amount of time try leaving another message. One time I didn't hear back for a month and so I wrote a letter and put in a formal documentation request - that got their attention fast.

I hope your plan goes to plan. Anything is worth a try All the best!

Thanks!

Hi looneymom,

I really don't know a lot about EDS so can't comment specifically on that. I just wanted to share that when I'm more symptomatic - to the point where I feel safer sitting on the floor than in a chair - I tend to have decreased tone in my trunk and have to sit with my hands propping on the floor for stability.

I commend this doctor for contributing to this dialogue - these are difficult, yet important, conversations to have. I especially liked the discussions about knowledge and collaboration, which works both ways. I am curious about this following perspective raised by Dr. Rob …

“But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.”

As someone living with a chronic condition, I feel that this viewpoint adds to my frustration. I will likely never be ‘fixed’ in the traditional medical sense. However, my quality of life does not necessarily equate to my vital signs. Even on some of my worst days where my HR is through the roof, my BP is bottoming out and I have hit the floor several times, I can still have brief moments of happiness, humor, and humility. Likewise, on days when my vitals are stable, I can feel alone and hopeless. I want to work with a physician who understands this; that health is more than the absence of disease (WHO). A physician – through various interventions that impact my physical and psychosocial being - can impact my quality of life even though he or she cannot rid me of my dysuatonomia. Yes, it is extremely important that my physician is highly knowledgeable from a medical perspective. However, it is equally important to me that he or she is empathetic, a skilled listener, flexible, personable, persistent and open-minded.

Just my two cents for today

p.s. Re: Dr. Rob's point of "we want the miraculous..." trust me, so do I. So if you find the magic wand please send it my way. However, until this comes to fruition please refer to my points above!

Just wondering if there is anyone else here from Toronto or surrounding area. Feel free to PM.

ramakentesh - I'm experiencing this today (ok BP but still symptomatic). Do you have some references?? I would love to read them. Thanks!!

Qualitative research on the lived experiences of having this condition that could be used to educate physicians.

Yes, this happens to me sometimes. Not sure why.

Thanks for sharing!

That does sound like a horrible day . A HR of 190 does feel terrible. I have no idea about your test results but I do hope you get some answers. Thinking of you - hang in there!

I faint, although much less often now that I am more familiar with the warning signs. Other times I am very tachycardic and my legs just give out. I must fall in a similar way each time because I end up with bruises in the same spot. Sometimes I will fall completely to the ground and other times I make it to my knees and get stuck in sitting. During tachy episodes my muscles tend to go rigid so it’s very hard to move out of whatever position I land in. Sometimes I am aware of the entire episode and other times I have patchy awareness. It just depends on how severe the episode is.

Perhaps get checked out just in case? :S

Too bad your cardiologist isn't helpful... I'm find the same thing for symptoms outside of HR and BP issues. No fun. Keep us posted.

That sounds like a scary place to be. Sorry to hear about the past week. I have experienced this but only during bad episodes, a few hours max, not all day. Lying supine doesn't always help me either - sometimes side lying does.I can't imagine feeling out of breath for that long. The ER decision is always a hard one... is there any other place you could go for help? How are your vitals? 02 saturation? Hope you get some help and relief very soon.

Very interesting – especially your thoughts on adrenaline. Thinking back, there were signs that something was wrong with my autonomic nervous system before the official onset of dysautonomia. I have always had poor temperature regulation and got goosebumps easily. I would get them when I was cold but would also get what my friends would call “angry bumps” … goosebumps if I was annoyed or angry. My friends and family could always tell how I was feeling, even if I was very good at controlling my facial expressions! This might sound completely wacky but it is something that others definitely noticed that was different about me. Also, I also frequently had glassy eyes and dilated pupils.

So glad that it went well and that you had a fun time