Migraine with aortic stenosis etc

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J

Jane

I have got "significant" (consultant cardiologist's word) aortic stenosis and am waiting to get an appointment with a surgeon to help the cardiologist decide when I need to have an avr. The area of the valve opening is .61 sq cm according to the echoscan and .5 sq cm according to an angiogram the week before last. I get VERY tired after very little exercise and am not sure how much I should be doing. I get some pain and quite a lot of breathlessness. GP gave me a GTN spray which helps a litttle bit. Do/did any of you get any medication to help with the fatigue, or is it just a case of learning to pace myself? Still working, but have reduced hours to afternoons only. Any advice on this?? Pressure in valve???? is between 60 and 70 not sure what.

Also I have had an increase in migraine attacks. Has anyone else had this problem? Not terrible headaches, but the zig zag lines in abundance, sometimes affecting first one eye and then the other.

Any advice very welcome, also I do need to lose about 40 pounds..and as soon as possible. Many thanks.

:confused:
 
Jane-
I had congenital aortic stenosis and aortic insufficiency. I had terrible migraines from the time I was about 13 until I had my surgery last year (I was 33 almost 34). Since then, I have not had one migraine (knock on wood). I saw several neurologists and "headache" specialists. I found that all treatments for migraines were quackery. No doctor ever told me he/she thought that the AS/AI played a part. Well, now I am not so sure. But.....

Anyway, I found that keeping a diary of my headaches, when I got them, how long they lasted, what I had been doing, eating, etc. when I got the migraine helped to figure out that some of them were triggered by hormonal changes around my period.
But, I could never take any of the "good" drugs for migraines, like Imitrex. I did take Migranol and that was supposed to help with the zigzag lines but never did. I also took another ergotamine drug called Ergostat and that never worked either. I got more relief from magnesium, feverfew and Excedrin Migraine.
Anyway, if you need the surgery, maybe you won't have any migraines post-op either!
It's interesting that AS patients say they get migraines. You are the third person I've heard that from. Hmmmmm.
-Mara
 
GTN for AS???

GTN for AS???

Thanks for your reply, Mara. Another thing I meant to ask and I have just been reminded about from another thread on the presurgery forum is should I be taking GTN for aortic stenosis?? It is just the valve that is shot. My arteries were fine on the angiogram. If I shouldn't be using it, would it make me more tired if I did?? Sorry to ask so many questions!:)
 
So true Mara

"when I got the migraine helped to figure out that some of them were triggered by hormonal changes around my period"

Get them bad. Jig jag lines, etc. nausa followed by pain. I suffered from these in my late teens early twenties prior to my MVR then they ceased.

MVR at age 30 and they returned with full force :confused:

My doctor placed me on Inderal which helps a lot! Off side I have gained weight from the medication. Slows the metabolism
 
Jane- I am not sure what GTN is.

Gina- Migraines are awful. Once you get the valves figured out then you can go on some of the drugs. I was on a barbituate when I was a teenager for the pain. I think it messed me up. I still have flashbacks! After I had been taking it for two years the doctors decided barbituates were bad, oh well, by then it was too late, the damage was done.

I always found that most of the treatment of migraines was so much quackery. I had a pretty good idea as to what was causing them. Now I think that the valve problem played a large part. I don't think I'd ever convince a neurologost of that though.
Sticking to a sleeping.waking schedule really helped me a lot. If I try to sleep in past about 8 a.m. I was doomed to get a migraine. I still feel puny now if I do that. Plus making sure I always ate breakfast really helped, too. Those were all things I could have figured out on my own.
I read recently in Natural Health magazine about a women who went to a naturopath for migraines and he told her all those common sense things. Big whoop! you can figure that out on your own. No one will ever figure out migraines. The drugs give relief but are not a cure.
-Mara
 
migrains & arotic stenosis

migrains & arotic stenosis

I had arotic regurgitation and mitral stenosis. I was very tired pre surgery...short of breath. I found you have to pace yourself. I would do alittle rest alittle. I was working 5 hrs a day in the am and I came home rested watching soaps and made supper before the kids came home from school. I was 34 when I had my surgery and I felt so amazingly better. I never had a headache or migrain problem but I'm sure other's will be able to help you there.
Best regards,
BECKY
 
Hello Jane,

With an aortic valve area of only 0.6 sq cm, I would be talking with a surgeon ASAP. If I remember correctly, I was told anything less than 0.8 sq cm indicates it is time for replacement. With valves, it is best to go sooner rather than later. You do NOT want to wait until you have permanent damage to your heart from trying to compensate for the valve problem.

NO WONDER you are so tired and easily exhausted!

You want to find a surgeon and hospital that does lots of AVR's (200 / yr for the surgeon, 1000 / yr for the hospital) since the more one does, the more proficient they become.

It's time to be making plans.

'AL'
 
GTN = Glyceryl trinitrate

GTN = Glyceryl trinitrate

Mara. GTN is glyceryl trinatrate. It is a spray that you take under your tongue when you get chest pain. But am not sure if it is appropriate when my problem is only aortic stenosis and not coronary artery disease. It does seem to relieve the pain a bit, bit I was warned that it could make my already low blood pressure even lower.

In the good old NHS I have to wait for the surgeon to contact me. The one my cardiologist recommends does not work privately. So I can not really hurry up the consultation. Seeing my GP next week so shall ask what he thinks. He is really hot on cardiovascular and got my angiogram hurried up.

I am really grateful for all the information and support so far.
 
Jane-
I am not sure about the GTN. if the doc thinks you should be on, then okay.
My husband is from Glasgow, so I know about the NHS. It's the major reason why we are not living in Glasgow now (apart from the weather!). Try to hang on. I never had much chest pain, so I can't really say much. Just take it easy and rest when you need to. Try to keep your iron levels up. I found that I was very anemic. Eat lots of read meat.
-Mara
 
Just to comment as another Aortic Stenotic person. I've also had/have migraines..(now more occular). The aortic valve is replaced, but I still have MPV.

I've decided (all on my own...lol...as I agree none of the migraine treaments have helped me over the years)..that somehow valve problems, migraines, and blood sugar levels all go hand in hand. I also agree with Mara that sleep patterns play a role!!!!

Of course these are only opinions, but I see so many of us 'valvies' having similiar experiences that I feel it all connects !!

Zipper *~*
 
Dave, I wish I could afford to. I am condifent the surgeon I am to see is very experienced. What I worry about is by the time I get to the top of the waiting list to see him, and then when he recommends surgery, by the time I get to the top of THAT waiting list, what sort of shape will I be in?

For this reason I am going for the mechanical valve (unless there are major contraindications) as in 10 years or so I will probably be classed as geriatric (I am 50 now and about 24 in my head!!). Therefore if I needed a tissue valve replacing when I was in my sixties, I don't think I would be a priority. It is indeed a frightening prospect. :rolleyes:


In fact the migraines are not a MAJOR problem as they are not very painful or debilitating once the zig zag lines have subsided. I just have had a marked increase in the visual disturbances and wondered if there was a connection between that and the "significant" aortic stenosis.

Thanks again to everyone for your answers. This forum has given so much information and comfort at a time when I am feeling pretty alone. (I am happily married with a teenage son, but somehow I cannot voice my fears to them yet.)
 
Hello Jane,

Here in the U.S. Nitroglycerin tablets or spray is used for angina from Coronary Artery Disease. My Cardiologist recommends NOT using it for pain from Valve narrowings as it could cause your blood pressure to drop too low and puts an extra load on your heart muscles.

IMHO, anything you or your GP can do to speed up the process would be worthwhile.

Also, again IMHO, I would recommend NOT pushing yourself or your heart until you get the valve replaced. At age 50, if you don't want a second surgery, I suspect a (St. Judes) mechanical valve is your best long term option.

Good Luck with the NHS !

'AL'
 
Jane

Jane

Just saw your post today. I had a congetal heart murmur and have a aortic valve replacement. Before surgery last year. I had to pace myself. I was 36 years old, and that was hard to do. It was getting so bad that it was hard to do what little house I had to do in my little apartment. I am better now, it will be a year next month. You keep hanging in there.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve
 
Thanks to you all!

Thanks to you all!

Just wanted to say a very big thank you to all who took the time and trouble to answer my query. You have taken loads off my mind. I will keep you posted as to what happens.:cool:
 
Migraines

Migraines

Hi Jane,

I live just across the water from you, in Clevedon.

I also have a bicuspid aortic, and I am pre-op (hopefully some time pre-op) and suffer from migraines (I also work in IT).

I have always suffered from migraines, and here are a few things that help me.

Migraleve pink tablets taken early with caffeine.
Feverfew tablets taken daily (these have had a very good effect).
Massaging the fleshy part of the hand between the thumb and first finger forcefully (I am told it releases adrenalin).

Good luck on your journey,

Chris
 
Jane.
As Chris said, Feverfew really seems to work. I was taking it daily and found that the migraines were less frequent and not as painfull. Magnesium also helped.
There was a big migraine study done in the UK and feverfew was determined to be very effective.
-Mara
 
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