Everything about edema

Hey all of you

I just wanted to open one discussion where people can ask and answer questions about edema. I had edema in my brain after my embolization in August. And I had edema in my brain after my procedure in January. And this time I really felt it!
The doctors put me on dexamethason at first and I had to build of. After that I became very sick and they put me on these meds again. When I build off the second time I became sick again. Finally they put me on prednison for 30 days.. and now I have to reduce from prednisone as well.

Does anyone here have experiences with dexamethason? I am just curious if it's used in other countries.
If you where using this medicine, what side-effects did you get?
Dexamethason is an cortiscosteroid, just like prednisone, used against edema and it's inflammatory.

Other questions I have;
How long can edema hold on?
Is it conventional to have edema after embolization? ( I read a lot about edema after radiation )

For those who had edema: did you had the feeling that the pressure in your head replaced when you lay down, or bent over? And did it influenced your nightrest?
So this it what I would like to know.. Anyone could add other questions.
I hope someone who had edema could tell me about his/her experiences.

Greetings Melissa

V interesting topic Melissa and for me just at the right point when I'm on almost full dose of dexa(16 mg a day).

Yes I have had experience of dexamethosone, started with 16 mg a day (2 pills of 2 mg each 4 times a day), max dose which they can give on brain edema, as I have been told. Have been on it since last 8 days and now tapering off reducing 4 mg every 3 days. So hopefully will have more to tell when i completely wean off in next 3 weeks.

Felt a huge spurt in energy after starting dexa to a state now that i cant move myself i.e. extreme muscle weakness, massive increase in appetite, mood swings, some depression, empty feeling, no sleep whatsoever, pressure in head now after 7-8 days when I lie down but when I change sides I can make myself comfortable, stomach disorder, burning sensation and acidity.

I'm having edema after 4.5 GK treatment and probably others well help on your embo question but I'm keeping a close eye on this thread.

What sort of sickness did you feel when you're coming off and how are they monitoring your edema? Do they do regular scans to check what is the right amount of dose before they are changing medication? For me they told that it'll be a bit of juggle to come off the dexa dose fully but my neurosuregon believes that I'll be fine in next few weeks. I know its more of his postitive attitude but keeping fingures crossed.

Thank you for the extensive reaction Ky. I try to make things clearer with my discussions, I can't find a lot about edema. Sometimes it's good to have one discussion where everyone can talk/ask about one subject.

Are you still on dexamethason right now? how long ago did you had your surgery then? I can relate in some of the symptoms you describe. This dexamethason had a bigger effect on my body as the prednison. Where you aware of the symptoms before you got the meds? especially the sleep is a huge problem! But I think in my case the pressure causes the sleeping problems, in stead of the meds.

The sickness I felt was terrible headaches, sometimes throwing up. I couldn't stand light and to much noise, but the headaches where so bad. Even morphine couldn't make me pain-free.
The first time I got dexamethason was the day of the procedure (wich is standard here) and they didn't made a scan or anything after. I was sent home building off with the dexa and had to come back when these terrible headaches showed up. Then they made scans and discovered the edema. They put me on dexa again, and released me for the second time. And the same thing happened when I build of. (the doctors concluded it must be the edema, the symptoms where the same) that's why I got prednisone. They didn't made a new scan, I feel a little better now but maybe the prednison supresses the pain.

I'll keep my fingers crossed for you as well. Do you feel better when your on dexamethason? I did. Let me know how your doing ok?


Hello Melissa
I had edema all over my head last year in March- I had a stroke due to five blood clots all over my head. I was having extreme head pain but thought it was a terrible migraine which got worse after flying...big ouch...ending up having a stroke - treatment other than blood thinners was some awful salt pills it really helped reduced the swelling I think I was on them for two or three months. It is terrible. Then after all that I got a dural fistula and just had my angiogram and embolism and it hurt very bad. It did not feel like the stroke edema but it was bad - a week ago I got nerve block shots in my head which helped. Do you have a pain neuro?

I've made it clear with my doctors how much I dislike the dexamethasone/decadron and they try to taper me off it quickly. I was on 24mg and slowly reduced over 30 days, and by the last week, I could hardly walk. Vision problems, tremors, apatite was outrageous and Extreme Cramping in the legs and feet. So much so I was in tears crawling through the house a few times with curled up feet and calves.

My edema was caused by Gamma Knife. :( The swelling was pretty extreme for me, causing multiple issues, primarily severe PAIN in the head. Couldn't do much of anything, even laying still was painful. Bending, stooping, walking and pretty much everything was difficult without causing severe pain. Ear drums fluttered, blood pressure increase would make things worse. Sleeping was sometimes the only relief for me. Percocet was my friend for five months. (MRI of my edema on my profile photos)

Hope this gives you some information.

Interesting discussion on edema...... When I went to the ER in '09 with left side stroke-like symptoms, I already new about my avm for over 20 years and had been untreated. My CT report from Hopkins noted 'edema' surrounding my avm. So edema even BEFORE any intervention! It was then, months later, after my first embolisation that a ventricle became blocked and my edema was then acute hydrocephalus. When I specifically asked the neuro at Hopkins about hydrocelphalus, she said " not yet, but could be bordering on it"? When I hear the term 'edema' I think swelling. Could our avms, depending on size and volume, cause this irritation from years of pulsating against healthy brain tissue? Another concern I faced, b/c of the size of my avm was a 'mass shift'. Again, more pushing on healthy brain tissue. Four embolizations and one shunt later, I'm as healthy as a horse!:) -GK

I was on Dexamethasone (Decadron) due to complications after SRS/Radiation. Honestly it did what it wss supposed to do...it took me from paralysis (due to brain swelling) on my left side to functioning normally again. I will tell you the side effects are not great. You feel constantly bloated like a big balloon and uncomfortable as well as incredibly cranky. I asked about alternative drugs, but for me..there were no viable options. I was so happy to come off that drug, but thankful it took care of business. I had my radiation (SRS) in Jan 2010, complications from swelling did not present until one year later when I was hospitalized twice and put on Dexamethasone. So Edema can last a long time for some people. I still have swelling in my brain right now, but not much. I had an embolization prior to my SRS/radiation, but was told the radiation and rapid occlusion of my AVM caused my swelling, not my embo. Good luck with your edema and drug therapy.

Interesting Caroline.

So how long you had to continue on Dexa and if you dont mind me asking what sort of dosage were you kept on? I'm now on it since last 18 days tapering off gradually and last night I decided to reduce it by just 2 mg for next few days (was kind of plan anyway but I decided to reduce it by a small amount). The side effects are very nasty and my immunity is so low now that I have got a severe bronchitis infection too so just can't deal with it. I wonder what's going to happen in next few days when I completely stop the Dexa dose. Benefits of this drug outweighed the side effects in my case too so I'm not questioning it but I do wonder the adjustment of dosage....how do we know the right amount?

The right amount.. The doctors decided in my case. I got a build of schedule when I was released. Is it a good idea to reduce the dosis on your own Ky?

I'm glad with all these reactions (although it cost me a lot of effort to read/understand and react to all of it.) But I read all you stories. Thanks a lot all of you!
And Greg: you just asked an interesting question, hard to answer to. I Think anything that influence the brain can cause edema and related problems. Or isn't that what you meant?

I guess there is no straight answer to my question about how long edema can stay. I think it depends on the situation.

Good luck all of you, hope your all doing fine. Keep discussing about edema and meds, very interesting to read all of this!

Melissa, I have nothing to contribute to the discussion other than Welcome Back! George

I knew it was liquid-like and I don't know why people call it swelling. Maybe because of the amount of liquid causes swelling of braintissue etc. I think you just gave the right definition of edema Greg!

This might be a strange question, but did anyone here had luquid coming out of their noses? And I don't mean leaking liquid or sneezing while having a cold.

Greetings to all of you

No, absolutely not Melissa, I wouldn't have handled the dose myself...I did follow the prescription with just a small amount of adjustment following the advise and guidelines they gave me on discharge. There has been some confusions as well between pharmacist and the doctors too so I had a long discussion with doc on the adjustment of dosages. I shouldn't have given the wrong msg here.

Anyway, I'm on my last 3 days of dose now and started to feel very weird, still full of energy though...my tongue sensation is loosing but I can talk clearly, no taste in mouth, pressure feeling in head...dont know if its the side effect of Dexa, tapering off of dose or edema is still there. I guess just wait and see untill I fully wean off.

No, I havent noticed any liquid coming off

You have some rare symptoms Ky, how do you feel know? I can only imagine the pressure in my head, because I still deal with that to. Especially when I lay down.. I don't know if it could still be edema. I should have asked how long it could last. I hope your feeling better today.

My Edema symptoms was a progressive head and neck pressure feeling that got worse every day until it was so painful I though I was having a bleed and I ended up in the ER. One of the first things I noticed was when I would lay on my bed on my belly facing the TV lifting my head to watch it and I would feel like someone was pumping pressure into my head. If I stayed in that position it would feel like my head will explode within minutes so I would have to stand and the pressure feeling would decrease.

dexamethason or Decadron Oh yeah, immediate relieve of my wicked headache and head pressure from radiation induced edema 12 mo post GK. Horrible side effects for me included bloating, joint pain, depression, nervousness, moon-face, excessive sweating, lot's of acne on face, neck, chest and shoulders. It was without a doubt one of the worst experiences I have ever encountered but it saved me from having a possible stroke or maybe death. It's an amazing drug but it's horrible on the flip side. It took me quite some time to get it out of my system and get back to normal. For those of you that are on it, it seems like a trip to hell that will never end but hang in there because it dose get better and you will be back to your normal evetually. See before and after MRI images on my profile.

I don't feel alarming rightnow, last day of dexa today so side effects should start to reduce now in next 48 hrs. Taste and sensation in mouth seems a little bit better. In my head I'm still thinking its due to Dexa and hopefully no edema but who knows! I'm also seeing my neursureon next Tuesday and I have no idea what will be the next step, just wait and watch or another MRI/CT? He is NOT fond of scans though..

I still have pressure feeling in my head, it feels heavy but no pain or headaches as such. Around the shoulders I can feel the muscles are stretched too...again I read that coming off of Dexa can cause muscles pain so may be thats what it is.

Brett, thanks for detailed explaination of your pain/pressue feeling, it helps when you can co-relate your symptoms. I also looked at your MRI images, are they with edema? How long did you edema last? I read that once you are on steroid for more than 2-3 weeks it could take quite some time to come off with those horrible side effects. Luckily, I'm not having depression or nervousness at the moment....

Just to give people an update here - im on 2nd dose of dexa now folllowed with intense headaches. Symptoms dont match this time hence I delayed in escalating it...:( I have also been put on topamax for migrane prevention since last 8 weeks so not sure if all the side effects which I have been experiencing is due to topamax or actually the swelling never went!

Another way to look at it - The brain reacts to the insult of the injury (AVM). The reaction is the fluid. The brain tissue expands like a sponge does when it absorbs water. The skull covers the sponge and there is no room for the expansion, thus the need for drugs to decrease the swelling. If it's not controlled the pressure can build and the pressure to result in shifting of the brain and cause damage.

A doctor told me that for every inch of edema it took a month for it to go away. Haven't verified this, but thought it was interesting.

Oh Ky, I am sorry that you still feel like this. How is it possible that your still have so much headaches? I am not doing very well either but according to my neurologist it's not edema. I am on Beta blockers now to prevent migrane. How are you reacting on the topamax?

I'm not so sure how am I reacting to Topamax so far..weight loss!! yeah :) word losses, huge concentration issues to name a few but i dont know if I should have been put on topamax coz when I was put on topamax regime my neurologist asked me to do MRI and that revealed some swelling. So I'm guessing that swelling wasn't too bad at the time and within 7-8 weeks its gone pretty bad..thats just my guess. I'm meeting him on 23rd August to discuss the report and side effects of topamax.

How are you doing on Beta blockers now Melissa because thats the next step my neurologist see in treating my migranes..