Anyone else?

[corina]

I'm almost sure (and so is my cardio and family doctor) that my POTS came directly after surgery. In july 2000 we went on family holiday to Hungary and when skating I fell and broke the os coccygis (sorry don't know the english word for it). After a year in which I got about 15 or 16 injections to stop the pain the bone still hurted very much, I couldn't sit and had surgery where they toke it off. DImmediately after srgery I felt very bad was very sick, throwing up, severe headache and problems with bp and heartrate. Lateron, my physicaltherapist send me to our familydoctor who send to the cardio and the whole POTS-thing started. It took them 2 and a half year to discover the POTS (my family doctor had never heard of it). Although I'm trying a lot of different meds right now but I'm still getting worse, since a year in a wheelchair, not able to drive etc. etc. Is anyone else having POTS because of surgery? (I'm sorry for the length of this post). I wonder if I'm ever getting (just a little?) better.

Corina

[MomtoGiuliana]

Corina

Surgery didn't bring on my POTS, but after a c-section I was remarkably more ill and remained so for months. My specialist told me it is VERY common for POTS to surface or re-surface after a surgical procedure, even a minor one. Recently I had a biopsy on my neck that resulted in my POTS symptoms becoming bad again for about a week.

Hope you see some recovery soon. Perhaps you need to find the right medications for you still that will aid in your recovery. My POTS doctor also told me that about 50% of women with POTS respond positively to a combination of low dose beta blocker and an SSRI. Have you and your doctor tried that combination?

Best wishes.

Katherine

[corina]

Hi Katherine

I've been on a low and very high doses of betablockers. Just the betablockers and combinations with fludrocortisone/florinef, midodrine, methylsomething and now I'm getting off the betablockers I've been taken for 2 and a half years and switch to another. It's a period of trying what works for the best in trying getting me out of my wheelchair. I don't wetter that is possible but we will see. By the way, I had a c-section having my first son as well, what a coincidence don't you think? It didn't give me a lot of trouble at that time though. O, can you explain what SSRI is, since I'm not from the us it sometimes is hard to understand everything and all the words I look up in my dictionary are forgotten in about an hour Thanks for responding anyway

Corina

[MomtoGiuliana]

Hi Corina

SSRI stands for Selective Serotonin Re-uptake Inhibitor. SSRIs are usually used for depression--e.g., Prozac, Zoloft. But, it has been found that they also help support the autonomic nervous system in ways that aren't well understood.

I'm sorry that you have been through so many medication regimes and haven't found relief.

Yes, the c-section is an interesting coincidence. C-section rates are pretty high here in the U.S.--like 25% of all deliveries. I think it might be lower than that in most European countries?

Besides having such difficulty standing, what are your other prominent symptoms. I also had difficulty standing for months, prior to treatment with an SSRI and a beta blocker. Then I started to get better. Now I am off the medications and am doing ok so far, although I still am mildly symptomatic.

I wonder if the injury itself that you had brought about your condition?

Most people do get better from POTS, particularly once properly treated. I hope it happens for you too.

Katherine

[corina]

Hi Katherine

thanks for explaining the SSRI-thing.

Yes, the injury I had deconditoned me as well although I kept on walking for as long as I good and although I couldn't sit properly I COULD stand, if it were necessary for a day. That's why it was so strange it gave me so much trouble after I had surgery. I also started having chestpains when trying to exercise and just sitting up made my heart race. My most prominent symptoms at this moment are difficulty in standing and walking. Waking up not knowing where I am, not knowing what the lights next to me were (which turned out to be my radio alarm ) not knowing how to put it off and seeing things that don't exist (I saw a "film" on my television while I was sure it wasn't on I even went out of bed to check). And those memory things drive me crazy sometimes. But hey, I don't want to complain I still live and it was a very nice day today.

About the C-section: no it's not a common thing overhere. Most women deliver there babies at home without painkillers. Since I had this C-section on my first delivery I had to go over to hospital delivering our second son who came without the C-section or what problem ever. It felt like a present!

Corina

[MomtoGiuliana]

Corina

The difference between how childbirth is treated here and in Europe is so interesting. Here it is treated as a medical condition and doctors are so afraid of lawsuits that they will do a c-section all too frequently. In my case, it was clearly necessary, b/c I had placental abruptio and was losing a lot of blood. If I were ever to have another child, the medical wisdom here now is to schedule a c-section at 37 weeks. This seems really crazy and unecessary and perhaps unhealthy for the baby.

Anyway, regarding POTS, yes deconditioning could also play a role, but it wouldn't cause POTS I don't think--although definitely could exaccerbate it. I was wondering more about the injury itself. I think there are some people on this forum who developed POTS following head or spinal injuries.

Yes, I know that mental confusion you describe--I also felt at times like I wasn't completely present--very awful feeling.

It sounds like you have a very positive attitude--which is so hard to have when you feel so terrible, but is so important to getting well. Keep asking questions and seeking help.

Katherine

[corina]

Hi Katherine

here in holland giving birth and being pregnant is definately not a medical condition. We are all very healthy (at least most of us ) and are not treated like we're ill. As we call it in Holland, pregnancy is a healthy disease meaning: don't bother you're just pregnant. Most women give birth at home which is very intimate because most of the time your own familydoctor is with you and a nurse. They and your husband help you through it. I think it's a very nice way to give birth to a child.

Regarding the POTS, the injury I had was a broken coccyx (I finally found the right word for it) which didn't heal enough and had to be taken off.

About this attitude, yes I think most of the times I'm very possitive I won't let it get me but sometimes it's very hard and now since I'm switching the meds I get much worse but I hope tomorrows better when I'm starting on the new ones .

And what helps me most is talking about it with people who understand, that's why I'm so glad to have found this forum because I can't find anyone in holland who knows of dysautonomia to talk to (except for my doctors). So Katherine, thanks for talking

Corina

[Dawg Tired]

My problems started right after having nasal surgery with a general anesthetic. It was to treat my sleep apnea and the ENT doctor told me I would need a total of 3 surgeries; the second would be 6 weeks after the first one. When I went in for a follow-up and to schedule the next surgery the doctor told me he didn't want to do any more. He wouldn't give me a reason why. I got my operative report but there wasn't anything in it to give me any clues.

[MomtoGiuliana]

Corina

Nice talking with you too.

I hope you find relief very soon.

Katherine

[blackwolf]

I'm not really sure, which came first the chicken or the egg. On March 8th, 2000, I had my tonsils out(cronicly swollen from mono a year before). On the 27th of that same month I had a terrible bout of "virul phlerusy(SP?)" Two weeks of the worst pain I've ever had, most of it was in the hospital on morphin and oxygen. Two weeks after recovering from that my other symptoms started. It seemed to "snowball" from there to here.

Blackwolf