follow-up after ablation in May

[liona]

Well, I still have not had one black-out or grey-out since the surgery. This has been the most amazing change. My entire life I have been seeking a cure for my abnormal epilepsy----------

I do a fair amount of exercise and have a lot of strange chest pains and sensations when doing stretching or yoga. I realize now that this is approximately the way I felt 20 years ago, when the chest pains would come and go with movement. In recent years the chest pains had become a constant feature of every waking moment.

As I healed, I started to feel the scar tissue toughen, and on exercise, I'd feel a slighter version of the burning, stinging sensations that another poster mentioned experiencing after mymectomy. I'm certain she's having a GREAT deal more of this than I, but it is still there.

I've been somewhat confused about the strained tired feeling I get where the obstruction used to be. Since my whole body isn't tired, it is difficult to just stop and rest, but I am trying to be conservative, so I attempt to honor the sensation. Sometimes I think I could just as well push myself through it more------ ???

It has been a big adjustment for me to not have the black-outs. I have nightmares that they come back. They have tortured me all my life, but no one ever believed that I even had them. I don't know how I have survived it.

An elderly friend just said that I lived an easy-going stress free life and people should follow my example!!! I was shocked!!! I explained to her that my slow pace was necessitated by my condition. That my life was like being in a locked room with one big light bulb and a jokester at the switch constantly jerking it off and on at erratic intervals!!! Hardly stress free!!!!

I haven't seen much on these boards about the black-outs. Is the extent of my suffering with them rare? Or is it just something people don't want to admit, even here??

[Sarah]

Dear Liona,

I'm glad your black-outs seem to have vanished. While fainting does happen with HCM, it doesn't seem to be something have so much of --which is good because if you are fainting with HCM it usually means you need an ICD.

I don't think people aren't mentioning fainting, as we seem to talk about everything here. I also wonder exactly what you mean by black-out --if you mean fainting or do you mean something else?

But I understand the nightmares; I've had my share. I had a TEE that went so badly, I'm still mentally scarred from it three years later.

Embrace the light and don't push too hard too soon, but talk to your doctor about pushing if you feel that you want to.

take care,
S

[liona]

What is a TEE?

No I'm not talking about fainting~! I talking about winking out---- everything goes dark for 3 seconds or maybe even 10 seconds and then comes back and no one even knows that anything is going on with me!

If I was fainting I'd start falling, but I'm perfectly capable of looking very normal while this is happening. on & off on & off on & off for an entire 57 year life. When Drs. ask if I faint, I've always told them NO, I don't faint.

[Reenie]

Liona, TEE is trans-esophageal echo. They take it through your esophagos.(sp) Have you told your doctor about the blacking out? I'm glad you're not having that happen any more, but info like that may help them determine if you're a candidate for an ICD.

Reenie

[Sarah]

Liona,

That must be really rotten --at least it seems to have stopped.

But, no, I've never heard of that happening to anyone else (that I know of).

take care,

S

[Lisa Salberg]

These "black outs" are not a symptom that a great deal of people have...at least not those I have talkded to ...I would say about 10-15% have some type of "vision" disturbance some are "grey outs" some have "lines that flash" others have "spots" and yet others go "black" as you have stated. Intestingly not all of them have / had obstruction??? Again more to learn about HCM...hey docs ya listening (Iknow you are!)

LISA

[TammyC]

So true Lisa!
Don't forget about the white light!!!! That's what I get. The doctor's say it's a migrane but I know it's not.....

[Sarah]

Migraines are associated with HCM ---reason unknown-- but many of us have both.

there are also Occular Migraines --you get the vision problem without the pain. http://www.intelihealth.com/IH/ihtIH/WSIHW000/20933/8480/366022.html

Personally, I've read almost every single post on this board (since I used to be a moderator) for something like three years now and I don't recall anyone saything they "wink" out or describe anything like it.

S

[TammyC]

HI
I didn't know what that meant "wink" lol. No offence to anyone who has them. I just laughed a bit to myself because I pictured someone standing in my office winking and me thinking they were hitting on me or something lol.......

[TammyC]

Thanks Sarah for the site on headaches.

[Kay Julius]

Very interesting about the headache and flashing lights...I myself have the flashing lights once in a while. Sometimes it last a few minutes other times it can last an hour. I too have been told that this is a unique type of migraine. Makes you wonder....

[MartinKennedy]

Whoa!!!! This must be ESP...I just got off the phone with my doctor and we were chatting about my 'fainting' spells or black outs which I have noticed since I was in college (I am now 51)...they happen when I am driving, sitting at my desk, etc. The driving part is strange; they can come on with little notice but I often have a sensation of awareness that something is wrong...I can lose it for a few seconds...scary. I also have noticed that I zone out working at the computer...will see a whole long line of letters, my finger having gotten stuck on a key...Since I also have sleep apnea, the spells while waking could be some form of narcolepsy but this now makes me even more suspicious that it is related to the HCM. I will post seperately but it does appear that I am going to be having the ablation sometime next year as we see how I do with a bit more beta blocker...symptoms since my angioplasty are much lessened but I do have almost constant awareness of chest discomfort, arm pain and numbness and now headaches again...fatigue sometimes sets in, too.

All my best :D