Katybug

Bumping post - so it doesn't get moved to 2nd page w/out being viewed

If you do a search using our search tool, you should be able to find past threads regarding pregnancy. I personally can't give you any feedback but it is a topic that comes up fairly often on the forum.

I'm so very excited for you!

Cmep37, I'm sorry this has been such a twisted situation. Maybe it's worth having the test and doing at least one follow up to get the results?? It sounds like all was not lost on the cardiologist, although I totally get not wanting to see him again. (I just told my geneticist at our appt yesterday that there is a doc she suggested I see but I don't want to because it is his research from 20 yrs ago that is a major reason Lyme patients are held back from treatment today. He has now started treating "chronic Lyme patients" but won't call it that and it makes me mad. But he might be the guy that can help me, so at some point I may have to swallow my pride and just go. But I don't want to.)

A great site for information and resources on EDS is www.ednf.org . They also have an international forum and a large membership. You may want to get on there and ask if there is someone in Ireland that can point you to some good physicians (and if you find some, I would love to have their names so I can add them on the physician list here! )

I actually have the opposite problem and can't handle anything with artificial sweeteners in it as they make me very nauseous. So, I've been using Skratch labs Exercise mix in lemons /limes, apple cinnamon (which is meant to drink hot), and orange (just tried this yesterday.) The best prices I've found on this are on Amazon. I've decided it's also easier because I can have it delivered and no heavy bulky bottles to carry home from the grocery store. And I can add mix or dilute with water as I need it. 180 mg sodium per 8 oz.serving. I also drink a can of tomato soup or the broth from French onion soup every day. That over a gram of sodium if you drink the whole can. For a non-sugar option, I had tried Nuun tablets which are good and convenient and cost effective. (Unfortunately, that's how I figured out I can't do artificial sweeteners. )

EDS is not ruled out because you don't see the characteristics in your family members. Also, Marfan Syndrome is another connective tissue disease that can cause dysautonomia. If you have a Marfanoid body, I really encourage you to see a geneticist or rheumatologist familiar with these two syndromes. I had never dislocated anything prior to my EDS diagnosis. I also took things as normal that are not actually normal in the general population but are not really obvious things you would notice. For example, I apparently have a remarkably high palate but I don't look inside other people's mouths often so never knew there was a difference between mine and their's. Also, the Hypermobile type of a joint can be hard to identify if you don't dislocate. For example, my elbows and knees don't necessarily flex backward enough that it would draw your attention, but when the angle of my joints is measured, these joints are several degrees more obtuse than they should be. If a doc who was this forward about the fact that he doesn't think there is a physical problem noted the Hypermobility, I would think it's worth pursuing. Also, there are complications with EDS and Marfan that make it important to know if you have it. And, as TCP stated, it's not unusual to be diagnosed with these as an adult.

Woot woot....now you might actually be able to do a happy dance!!

I'm at a big appt so will write more later but the reference to Hypermobile type is because that is the most common sign of Ehlers Danlos Syndrome ( EDS) which is a common underlying cause or comorbid condition of dysautonomia. You're not having a psychological problem. Many of us were treated this way because docs don't like to admit that they don't understand some conditions. This is a rare condition and most average docs don't have a grip on it.

Hope it went well!

That's terrible! I'm so sorry! I swear if these insurance people had to live in our bodies, they wouldn't make it a day!

Will be sending healing thoughts your way tomorrow, Ancy! Think of how good it will feel to have a heart rate of 70!!!

Here's my two new thoughts... 1)Since the Cipro and Levaquin (both from the quinolone family) work, have they considered doing higher dose and for 2x the normal length of time. For example, when I had diverticulitis in December and we were trying to keep me out of the hospital for IV antibiotics, my doc gave me 750mg Cipro (I had never had more than 500mg) and we kept me on it for 20 days instead of 10. 2) As the yeast goes, you might look up and try a "Candida diet" if it's ok with your docs. I will admit, it's no fun in that it eliminated all sugar and carbs but I know 3 people who had success getting rid of systemic candida infections this way when nothing else helped.

I struggle with the physical limitations the most. I can get past my cognitive issues but I hate never knowing if what I have planned will be able to happen. And, what I have planned may be something as simple as doing my laundry. I have to plan one activity each day and if I'm not well enough to do it, the. I have to rethink my whole week. Right now I'm down to my last 2 Maxalt for migraine. I have to save them for Wednesday and Thursday because I have important doctors appointments those two days that I can't miss. I've had severe migraine pain everyday for 3 weeks so I know that I likely won't get anything done Monday and Tuesday because I won't have meds to control the pain. It's things like this that drive me nuts.

Welcome to the forum!

Beta blockers are contraindicated for people with MCAS because they can cause mast cell degranulation and breathing issues. I believe there is also some concern with BB in asthmatics although I'm not 100% on that. BB also make the use of an epi pen less effective and shorter acting. I mentioned all of that because, BB have been associated in certain circumstances with breathing issues. And, because of their effect when using an epi pen (an adrenal equivalent ), I wonder if your adrenal fatigue is making you more susceptible to the side effects. I have mcas and the BB did effect my breathing and it did not improve.

I have POTS. My maternal grandmother and my mother weren't /aren't diagnosed but have similar health issues. My grandmother used to have "spells" where she would feel faint and sweat profusely, sometimes have GI issues related to these episodes. They also had/have many EDS characteristics although neither have that dx either. They also had autoimmune thyroid issues, grandmother had Grave's and Mom and older sister have Hashimoto's.

Sarah, that a good point, too! Bladder dysfunction is a complication of dysautonomia and could be a significant consideration.

No I don't although I did as a kid. But, one thing that I know can cause this is when small amounts of cerebrospinal fluid leak down your throat. It's rare but can happen. I bring it up because of the prevalence of EDS in our population as it is somewhat more common in EDS patients especially those with Chiari.

Hope you get to the bottom of it for your girl. It must be miserable.

I liked the article because it's written from a patient perspective. I don't have IC or chronic UTI, but I know this topic comes up frequently on this forum and members in past years have ended up diagnosed with IC.

I found this article the other day. I found it interesting. Even if she has yeast and bacterial infection, I wonder if the dietary changes mentioned in this article (which seem to be fairly simple changes) could bring some relief. https://www.yahoo.com/style/happened-chronic-condition-misdiagnosed-utis-160000347.html

I don't have a good answer for you as to what started it all. It seems to all run together. But, this paper is the most comprehensive paper I've found on mast cell by one of the top experts. It could be helpful for you and your doctor. Make sure to read all the figures and tables as there is tons of info in them. http://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

Hoping for a great outcome for you!

Just fyi, my dysautonomia specialist has ttt equipment that takes constant bp and hr readings. Many only take periodic readings. When my original ttt was done (with periodic readings), my bp didn't show anything out of the ordinary. I did clearly have POTS. However, when my specialist did another ttt (with constant readings), it showed I had sudden sharp dips in my bp that only last for 2-3 seconds. But, he said that's enough to cause symptoms but not enough to get caught when someone takes readings a few minutes apart. This might be a consideration for you.