New here - looking for some ideas and help

[Jen]

Hi, I?m new to the forum. I was diagnosed with neurocardiogenic syncope at the age of 18 (I?m 23 now), but I started fainting around the age of 12. I had a pacemaker implanted at the age of 20 when my cardiologist discovered my heart was stopping during my fainting spells through an event monitor that I was wearing. That has seemed to be a great help when my heart rate bottoms out quickly (which happens frequently), but when I have very low blood pressure, I still black out or faint. I?ve tried numerous medications and the most recent combination I?m taking is florinef, midodrine, acebutolol, and neurontin (for severe headaches that I get when I black out), as well as medications for asthma and GERD. This combo has some of my symptoms at bay, though I still can?t stand still for very long or be out in the heat. I had major orthopedic surgery two months ago and since then my fainting problems have become much worse. Some days I black out every time I stand up (from very low blood pressure ? sometimes at low at 55/40). I also have been close to fainting numerous times each week and must lie down immediately. This is dangerous because my bones are still healing and I CAN?T risk falling right now. I saw my cardiologist a month ago and the only change he made to my medications was to up my florinef to .2mg daily.

The reason I?m posting is that these problems haven?t improved much over the past month and I have a follow-up appointment tomorrow. I want to come in this time with some ideas of what else could be done (I already do other measures like added salt, more fluids, etc). Last time my cardiologist mentioned the possibility of trying erythropoieten or octreotide next, but said that my hemoglobin level didn?t indicate me trying erythropoieten, as it wasn?t low enough. Does anyone have experience with either of these drugs? I also recently heard of a drug called mestinon and didn?t know if that was worth bringing up tomorrow either.

My other question is that I noticed when looking through some of the posts on the forum, that some of you also have Ehlers Danlos syndrome. I was diagnosed with that at Mayo Clinic this past fall. Are NCS or other autonomic problems common with EDS? If so, does that imply that I will continue having fainting problems forever?

I would really appreciate any thoughts and ideas you might have.

Thanks,

Jen

[steph37822]

oops

[morgan617]

Hi Jen, sorry I'm not a fainter, but I did want to welcome you to the site. There are many people here that do have your problems and you will hearing from them, but I at least wanted to say a quick welcome and hello! morgan

[MightyMouse]

Jen, I have EDS and have been diagnosed also with NCS & POTS. I don't have bradycardia, but I have had very low blood pressure (down as low as 30/-- and I was still upright, but barely).

I have problems with bones not healing properly, probably an EDS issue--i had spinal surgery a few years ago, and the first graft failed to integrate with the surrounding bone (called "non union"). The graft never gained a blood supply, so the bone died and then collapsed, essentially leaving me with a broken neck, and needing another surgery to fix everything.

It took me a full year to recover from my second surgery, and about 2 years total to get my self back to my presurgery self. Every day is an adventure.

As for possible things to help- the meds you mentioned are among the standard treatments for our class of disorders. Additionally, if you're not on a high salt, high fluid diet, that's part of the non-prescription regimen that most ANS docs suggest. Compression stockings are also on that list.

Do check out the "what helps" section of the main site.

BTW, I'm also on meds for asthma and allergies (Advair, Zyrtec, Singulair, Flonase and Benedryl). For some reason my body is allergic to everything, although when I was young I was almost never sick (but I hated the heat and sweated like nobody's business).

feel free to fire away with questions.

Nina

[Jen]

Thank you all so much for welcoming me and for the advice you have already given me. Steph, I did start physical therapy and am doing quite a bit of strengthening and balance activities. Those were some great suggestions that I will definitely try out. Actually, I've been doing wall squats, but that is what usually makes me close to fainting (I always have to have a chair nearby). I'm sure it's something that will just have to improve with time. I had surgery to correct severe rotational deformities of my legs (congenital), so I had both femurs, tibias, and fibulas broken and realigned. So far the bones have been healing well, but I've had problems with other surgeries in the past. What suprised me the most was that I didn't have problems with the wounds closing, as I did with my pacemaker surgery. I did lose most of the muscle mass in my legs from being immobile, so hopefully if that's what has caused everything to go haywire it will improve with time. Thanks, Nina, for warning me that it could take awhile to get back to what I was like before surgery.

Thanks also for the suggestions about the medications. I'll talk tomorrow with my cardiologist and hopefully he will be willing to try something new. I have been on a high salt diet, but gave up on compression stockings. I tried them a few years ago and continued to black out just as bad as without them, so gave up. Maybe I will consider trying them again.

I'll probably have more questions, especially after my appointment tomorrow, but thanks already. You all seem like a great group of people.

~Jen

[Jen]

Well, I had a bit of a disappointing appointment yesterday. I saw the cardiologist for only a few minutes. He is just bumping up my florinef to .3mg a day. He feels that most of my problems are due to my weight loss from surgery (I lost 20 pounds due to severe nausea and being so immobile, and I was already skinny). Until I can get that weight back on, I'll continue to have problems. I ate lots of extra food this past month, extra snacks, bigger meals, etc, but only put on about three pounds. My cardiologist wasn't willing to discuss trying other medications. I brought it up, but was told that florinef is the only drug that will help me.

So, I have a few more questions today. Have others had problems with weight loss, and do you have any tips on how to pack on more weight?

Is it common to feel worse in the morning? I've had to move my showers to the afternoon or evening, otherwise I get too close to fainting. The same goes for physical therapy - if I have it in the morning, I usually get pretty bad, but if I have an afternoon appointment, I do much better.

Thanks,

Jen

[steph37822]

oops

[persephone]

Hey Jen, we're the same age and have the same problems- EDS, POTS and NCS! How strange! I can't actually help with what you're asking about as I don't appear to get the bradycardia, but I hope you find the answers you need from someone soon.

When are you 24? My birthday's September 23rd. It would be even stranger if we were EXACTLY the same age!

[Jen]

Steph, thanks for the additional information. Those are some great ideas and if even more calories in my diet don't help, then I will look into creatine. I was using Reglan in the beginning because I would get very nauseous even looking at food and with it I finally did regain an appetite. I have started to regain some muscle mass in my legs - I do physical therapy twice a week and the prescribed exercises on my own twice a day for about an hour at a time. I'm not using weights yet in PT as the tibia and fibula bones were broken at the ankle, so it would hurt to use ankle weights yet. I do use bands on my feet to regain ROM in my ankles.The bones aren't quite healed yet, so mainly I do some strength training, some balance training, and also relearning to walk again. As far as my cardiologist, I've already been to two others who gave up on me and so I don't want to lose this one, even if he isn't the greatest. He co-authored the book on syncope with Dr. Grubb, so I have hopes that he will keep up on the latest treatments. If this increase in florinef doesn't do the trick, I'll definitely speak up and try something new, even if that means finding a new doctor. Hope your recovery goes well and you can get out of that cast soon.

Persephone, wow, that's strange that we do have the same problems and are the same age. I actually just turned 23 this past month (May 1), but we still are fairly close in age. Thanks for welcoming me.

[Merrill]

Hi, Jen. Just thought I'd add a couple thoughts ... I use a chair in the shower when I have to wash my hair. (It's thick and long and takes a while... I feel more secure sitting if I have to have my hands raised over my head for that length of time.) I'm OK standing for a quick shower, though. I use a little kid's chair that's small enough to keep in the bathroom outside the tub. Little kids who come over stand on it to wash hands at the sink or to get up to the toilet if need be. You might think about getting one (if you don't have one already or haven't considered it). Also, as Steph said, many people including me have a harder time in the mornings. I feel as if I don't function well (and my legs feel like they weigh a gazillion pounds) until I have my compression hose on. Are you wearing those?

Best to you,

m

[DancingLight]

Hi Jen,

As you can see it is the wee hours of the morning...so forgive me if this is a bit loopy!

I am really glad that you and steph have been able to correspond a little here...as you two seem to be from the same pea pod! Amazing how many similarities there are between the two of you.

I just had GB surgery 4 months ago, and my recovery has been, to say the least, miserable! Surgery and POTS don't go together like 'changity, chang, she-bop' (sorry, a little Grease in there).

Anyway, it looks like you got good answers to your posts so far. I hope that your cardiologist will be willing to 'look outside the box' a bit more. It seems that if he has co-authored this bood with Dr. Grubb he would be knowledgable and open to some other options. Florinef is only one of so many. I did not have any luck with Florinef...it made me depressed and suicidal...which, others on this site know, is not exactly 'in character' for me!

Anyway, I am going to give sleep another shot here....we'll see how it goes...

I don't have much else to add, except that I wanted to WELCOME YOU HERE AND SAY THAT I AM SO GLAD THAT YOU FOUND US! There are many other young women on this site...well, okay, now I'm gonna offend someone...okay, there are ALL young women on this site. NO one on this site is old! There, how's that?

Okay, this is loopy...oh well, it's the middle of the night and all I want is SLEEP!

Later alligator!

Emily

[Guest Julia59]

Welcome Jen,

I have heard of EDS being linked with ANS dysfunction also. Some medical professionals think some people are born with EDS and the ANS issues follow.

I'm not very well versed today so bear with me. I think it's important to build muscle strength to help keep those joints and ligaments to be more stable. I should talk though----------------- I do need to work harder at that.

POTS and EDS has affected me head to toe basically. There are days things feel so loose i feel like a rag doll. I find it quite unsettling. It is not always that bad for a lot of peole who have EDS. My upper spine has been affected a great deal, and I have already had one surgery on my cervical spine---and trying like heck to avoid another if at all possible. The Doc that did my surgery used a titanium plate after fusing two levels which fortunately worked out very well considering I was diagnosed with EDS a couple years later. This surgeon did suspect it however---and I think that is why he added the plate.

I continue to have problems and I am working with another neuro surgeon who has been patient with me. At first he did not think surgery was in the near future as he felt my main issue was in the cervical/cranial junction---something called a retroflex odontoid. the surgery is fairly invasive, and he said unless I get more arrithmias and weakness in the legs to avoid the surgery. The odontoid bone was tilted with pannus formation and defacement of the subarchnoid space----which was putting some pressure on the brain stem, along with a mild chiari malformation with little herniation, and of course the cervical spine stenosis with various buldging or herniated disks, depending on who's reading the report.

However, with symptoms getting worse the surgeon is concerned and ordered another MRI due to a lump in my throat. I was also sent to another neurosurgeon because the neurologist I thought would work with my current NSG was blowing the whole thing off---and then proceded to diagnose fibromyalgia and CFS. He did not blow off the POTS---and he also agreed with the EDS. Basically he was blowing off the chiari issues. The other surgeon said I had no chiari, just a small lower cranium or posterior fossa, and also confirmed the spinal stenosis, but didn't think any of it had anything to do with my ANS symptoms, or the numbness in my arms and legs, swallowing problems or any other CNS symptoms.

These docs that I am currently working with also think there is a connection with EDS and chiari---they are currently doing studies on the connection between the two. I will be involved in a study at NIH, I just don't know when. They also know a considerable amount about ANS dysfunction, as many with upper spine/chiari issues have some form of ANS dsyfunction.

My main fear right now is the instability in the cervical/cranial area. Maybe it's not as bad as it feels---that is what we are trying to figure out. Even MRI's don't always show everything---as the doc that did my first surgery said my spine had an dent in it that was pretty severe in one area, and another kidney bean shaped one on the other level. This was found after he opened me up and looked at my spinal cord.

All I know is that I feel like all my joints are becoming more and more unstable, and all my POTS symptoms seem to be getting worse.

There are many different levels of severity of both POTS and EDS---and some people do fairly well and lead close to normal lives.

Welcome again to this forum-----you will find that there is a lot of support and understaning----and most of all, people will believe you.

Julie :0)

[Jen]

Merrill, thanks for the suggestion on using a chair when I take a shower. I'm living with my parents as I recover from surgery and they have a shower with a built-in chair and side rails. That has helped immensely, so whenever I'm feeling fainty I'll shower in there. I might have to look into buying one when I'm back at school.

Emily, thanks for relaying your problems after surgery as well. It helps knowing that what's going on to me isn't so uncommon. I've already started having problems on this higher dose of florinef - constant headaches and high blood pressure. Going to give it a few more days, but will probably be putting a call into my cardio and going back to the lower dose. Wish this would have helped. It gets frustrating because it seems like I always have trouble staying at a normal blood pressure. The meds either bring it too high or low low, and I don't feel well at either.

Julie, thank you for describing your experience with EDS and POTS. This physical therapy is actually probably going to help in stabilizing my joints, as they had become bad before surgery. I've had problems with my hips, knees, fingers, and shoulders subluxing/dislocating, and since surgery have not had my hips or knees dislocate or sublux. Are neck and spine problems common with EDS? You and Nina both described having these problems. Is that what chiari is - a spine problem? I hope that can get better for you. It's good to know for me to know what might be coming. I was told to expect chronic pain for the rest of my life, but the geneticist I saw didn't know anything about autonomic problems.

~Jen

[sally]

Hi Jen,

Sorry for the late reply.

Just wanted to also confirm what Julie said about EDS and ANS problems going hand in hand. We experience that as well and are EDSers also. we were told of this connection by a rheumy from Johns Hopkins who explained the whys of it. Also along with the ANS problems, EDS can also cause raynauds symptoms (not the disease, that's a different story). Haven't heard of any real cures for the chronic pain level from EDS which is a real charming aspect and I think comes in a close 2nd as the most frustrating thing of the disorder next to the blood pressure issue, but the use of a tens unit helps a little but the biggest help is I think is doing PT to build up muscle around the joints. Good luck and well wishes sent your way.

[Jen]

Thanks Sally for the additional information on EDS and autonomic problems. You mentioned that your rheumatologist explained why there was a connection between the two. Do you remember what he said? Would you mind sharing it? I'd like to learn more about why these two go hand in hand. I'm new to the diagnosis of EDS and still am trying to figure that all out.

~Jen