Safe To Scuba Dive...? (I Know I Probably Already Know The Answer)

[cctalk]

Hi guys...

I am new here but I have had POTS officially since December of 2014 and really for about a year with autonomic dysfunction all my life. I actually had a tumor, a T1-T2 Schwannoma nerve tumor IN my autonomic nervous system removed at Mayo in December which at first doctors thought was my cause of dysautonomia but now we realize I actually have a gene mutation (almost positive) that caused all of it. So a hereditary form of autonomic dysfunction sort of. I also have just been officially diagnosed with Ehlers-Danlos Syndrome.

Anyways, I love love love scuba diving and haven't been in a year...I am about to go on a trip to hawaii and I want to dive really bad. I've never really had the symptoms I have now with full blown horrible POTS scuba diving before...so the rational part of my brain is saying, no of course don't scuba dive, but my adventure-loving irrational part is saying just go for it.

Do any of you have any thoughts? I did ask my autonomic neuro the other day and he wasn't super adament about me NOT doing it...he more like suggested against it and then said he isn't an expert but the consequences would be bad because we don't know if my blood pressure/heart rate would remain the same even if I came up with protocol and took all the proper precautions to not have decompression sickness.

I guess I honestly just want to hear opinions and then maybe suggestions about what you guys do to sort of adjust activities that you love to do to fit in with having dysautonomia all while being safe. I am currently on midodrine (just started) 5mg 3x daily, vyvanse 60mg as needed, diclofenac sodium 75mg 2x daily, tizanidine 4mg as needed (muscle relaxer), magnesium, zyflamed (anti-inflammatory vitamin supplement).

Thank you all! CC

[Katybug]

I think this is a conversation you should have with the doctors handling your autonomic dysfunction since this could truly be a life or death decision.

Regardless of the decision on scuba diving, I hope you have an amazing time in Hawaii.

[cctalk]

Thank you Katie! Yes, I know I realize that. I just find that they are not typically straightforward when I ask, and when I did ask the other day, about questions regarding activities or certain decisions. I guess that is why I was wondering not really anyone's opinion on this decision for me necessarily but more of a general is there anyone here that scuba dives with autonomic dysfunction and/or how is it that you approach decisions regarding activity choice when your doctor essentially leaves it up to you? Sorry, I should have phrased this more in that way to begin with.

[Katybug]

Well, I do understand that. If it helps I've ridden horses for 36 years. But I know it's not a safe place to be if I experience a presyncopal episode. So, for now, much to my chagrin, I enjoy my horses from the ground. My doctors have no problems with me riding but they've never been on top of a 1200 lb. animal, either....they don't get it.

[cctalk]

Well that is actually very relatable to me! I have also ridden horses essentially my whole life starting as a toddler. So, about 17 years. So yes I do totally understand! I have started to get back on. Mostly doing very light riding. While at college riding changed from competitive hunter to just riding trails with a friend every week anyways so I had already sort of began riding more infrequently. So when I developed POTS even though I didn't know that is what it was at the time and I was already so sick from everything else I would literally faint just lifting the saddle up. I also wasn't really fond of being on top of a 1200 lb animal that does have it's own brain and can decide to spaz any given moment while I was feeling so weak! On that note Katie, I'm sure you constantly hear about how having leg strength is good for POTS etc, so I have also been thinking about gradually trying to get back in the saddle as exercise. It seems to me this is a form of "recumbant exercise" and could help with bloodflow and prevent blood pooling...Of course like you said the presyncope is not desireable while on top of a horse. I'm hoping if I just ease back into it maybe I can do a little here and there. I will say I am able to sort of detect if I might faint a lot better now than before. And I find that if I am in the same position, like sitting, even if I am exercising like on a bike/horse, I do not get nearly as bad of fainting feelings. I guess I'm hopeful. When I have ridden I make sure I am never alone just in case and then that someone is there when I hop off because that is the time where I am almost garunteed to pass out or almost pass out and feel horrible. So I have sort of adjusted and I literally have someone at the reigns while I gently slide off and sit immediately on the ground!

[Katybug]

I tried for a while. But the EDS left my hips partially dislocated the last time I rode so that complicated the getting off part. It's interesting that you feel the worst when you get off. I have the same problem. So far, POTS wise, I have been able to hold it together riding but I become really ill almost immediately when I get off. I actually think riding (those leg muscles ) kept me going long after my body would have given up otherwise. But, for now, I know it's not safe for me. I'm glad you can still do it.

[cctalk]

At least you do still get horses as a part of your life! On the ground or not, they are absolutely magical creatures when it comes to helping us heal. I think, at least. The newly added EDS for me is what will probably also start to impede more on riding. And, by no means am I regularly riding. I kind of reward myself. Like a splurge on something nice except it's just an opportunity to get really dirty and smell like horse and feel horrible for a day at least. Worth it occassionally! But yes. Sometimes I have wondered if having ridden for so long thus having extremely strong legs and pelvic floor muscles if that is what was helping me sort of keep the full blown dys stuff at bay for a long time. Because before I had little bits of ANS symptoms here and there for a long time preDX and certainly when I went to college I was essentially ending a 12 or so year career of riding every day for sometimes hours which was a lot of my exercise. Coincidence or not, I seemed to decline very close to quitting riding like that.

The EDS is really new for me. I've dislocated about every joint in my body sometimes without knowing it until I would go see a PT or a LMT and they would point out that my wrist/thumb/ankle/elbow...etc was "a little out of place" and they would usually pop it back in. A couple times the shoulder dislocations required ER visits. I also broke 11 bones as a kid from just tripping/being clumsy. Sometimes two bones at once. Yet no one really thought of it until this March I turned my head, literally, and ruptured my c3-c4 disc centrally which was excruciating. And was DXed with cervical osteoarthritis/facet joint arthritis. With everything else my rheumatolgosit is who thought of it after he realized how hypermobile I was. So I empathize with the EDS affecting riding. It certainly I think will start to more for me as well. If you don't mind me asking though, what have you found is best for managing the EDS symptoms?

[Katybug]

EDS symptoms are hard especially since there are so many. I have a number of braces (wrists, knees, ankles) as the pain is very transient for me. Sometimes my ankles go through a phase of collapsing and pain, so then it's time for those braces, etc., etc.. I did have prescription hard braces for my ankles at one point and they did stabilize my ankles but unfortunately they caused the joints in my feet a lot of pain so that was money wasted. Braces have taken a lot of trial and error to find ones that work for me in all aspects.

I exercise with resistance bands to try to keep my muscles together enough to support my joints properly. I have learned where my limit is with this so as not to overdo.

My geneticist prescribes a compounded analgesic cream for some of her patients. There's several different prescription drugs in it and I can't remember the list. But there are other prescription analgesic creams that she will try to like Voltaren. I didn't find these helped me much but I am a rapid metabolizer of many meds and so that very likely has something to do with that.

I only use shoe brands that have orthotic foot beds built in. Thankfully they make stylish shoes like this these days. This actually makes a huge difference for me as I have particular trouble with the joints from my hips through my feet.

I don't know how much you've researched EDS yet. If you want comprehensive EDS information, www.ednf.org is a good resource.

If I think of anything else, I'll post again.

Take care,

Katie

[lewis]

Being in the water really helps me since it is cooler and constricts my blood vessels. I wouldn't hesitate to do it since it makes me almost feel normal when I go in. How has being in the water affected you?

[little_blue_jay]

At least you do still get horses as a part of your life! On the ground or not, they are absolutely magical creatures when it comes to helping us heal. it's just an opportunity to get really dirty and smell like horse

cctalk & katybug, you guys are so lucky to have ridden as much as you have and/or spend so much time with horses like you do! *jealous* I love horses, I would love to have one (or two as they like company!) some day! A friend drives me out to the country to feed some horses carrots and I just love it when I come home with my hands smelling like horse Somebody (can't remember who) said "the outside of a horse is good for the inside of a man" (or woman!)

Sorry to hijack! Carry on!

[yogini]

Being below sea level might actually be beneficial for POTS, but I would also be worried about the change in barometric pressure from going under and then coming back up again. You may want to search the forum. I am not sure if there are other discussions on SCUBA, but there are a lot on flying. Some people have trouble and pass out during ascent and descent due to the pressure change. Underwater it would also be hard to communicate and signal for help if an issue comes up.

Because of this, I am very surprised that a doctor didn't caution more strongly, but it is really individual. You also say you are going through a period of full-blown, horrible POTS. Almost everyone in the forum here improves over time -- so maybe it makes sense to at least hold off until you get to a better place?

[SarahA33]

hi cece,
try this thread: http://forums.dinet.org/index.php?/topic/26364-scuba-diving/?hl=scuba

Sarah

[fitnesskelly]

Today it hit me that I need to do some research into POTS/dysautonomia and SCUBA because I'm a diver and most dives that I do are deep wrecks. DAN (Divers Action Network) says that the blood pressure would normalize in the water, but it's always best to talk to your doctor first. Here's a very brief article: http://www.daneurope.org/readarticle?p_p_id=web_content_reading&p_p_lifecycle=0&p_p_mode=view&p_r_p_-1523133153_groupId=10103&p_r_p_-1523133153_articleId=5994735&p_r_p_-1523133153_articleVersion=1.0&p_r_p_-1523133153_commaCategories=Medical+Questions+EN&p_r_p_-1523133153_commaTags=

(If you don't know DAN is, you should. It's very important to carry Dive Accident Insurance, plus they do all kinds of accident and medical research when it comes to SCUBA)

My concern over my situation are the depths I go on and the impact on my body of being that deep. Every 33 feet under is another atmosphere of pressure. On wrecks, we often max at 110, 120 and 130 feet, and stay there for a good few minutes. That's a lot of "crushing" impact on the body (literally, thousands of pounds of pressure). I am incredibly exhausted after this kind of diving, unless I use Nitrox (which isn't always a possibility at these depths). My thought is that perhaps it is harder on my body with already low BP. I plan to ask my doc about as I might be diving again in the next month.

Even a very healthy person can die if they don't do the proper safety stops - so make sure you never skimp on your safety stop(s).

(My qualifications: OW Diver, Advanced OW diver, Nitrox, Rescue Diver)

[cctalk]

Thank you for that! Yeah I did a little bit of research. Even though I opted out of diving last month, I think now that I am able to control my BP a little better on medication it is more possible. I met someone with POTS who is actually a rescue diver so she pretty much said the same thing. I just love to dive. But for now it's just a fun hobby. I want to take a dive photography class and I think I'll be happy just making sure I'm safe if I decide to dive. I actually may talk to my allergist because he is an avid diver and he may be able to provide more medical input as well.

[fitnesskelly]

I had to opt out of diving in Key West earlier this year...kind of a bummer, but I also played it better safe than sorry (had the flu the month earlier and was having a really hard time recovering from it...diving sounded just too exhausting for me).

We have a GoPro camera that we use for video and photography. It has a feature which takes photos every set interval (I think you can choose intervals from 5 seconds to 30 seconds) while taking video. It doesn't produce the best, most artistic photos, but with iphoto, I do a little photo editing and get some good pictures out of it. If you end up with a GoPro, get a spare battery for sure.