Vertigo after a bleed, but cannot operate...your experience?

Has anyone experienced vertigo after a bleed? Did this go away? They cannot operate on me, due to the location, and I’m having to wait it out and see what resolves on its own. The vertigo is a major issue for me. Anyone experienced this, and does anything work to help alleviate the symptoms? I have an appt this Friday with the Neurologist, who specializes in vertigo. Anyone go this route? Thanks in advance! :slight_smile:

~Crystal

Hi Crystal,
Am so sorry you’re having vertigo now. :frowning:
Mos. ago I had a l-o-n-g bout of vertigo, but fortunately was unrelated to my CM’s and eventually went away.
Will keep my fingers crossed your neuro can help you with this!
Have you considered another opinion for surgery/treatment?? Just a thought…
Take care,
Patti

Hey Patti, :slight_smile:

The Neurosurgeon made a comment that I also needed to see an ENT, due to an axillary sinus polyp/cyst in the sinus cavity. A DR is currently reviewing my MRI to see if they can help with this. I am also praying the Neurologist can help. The Neurosurgeon said that this particular DR is labeled “The Dizzy Doctor”, and is known to be very good in this area. Today is not as bad as the weekend, but enough that I am sick to my stomach from the motion sickness. I’m at least not bumping into walls today. :frowning: No fun at all!

I haven’t thought of a 2nd opinion yet. Based upon the location, it concerns me of the risks. Two Dr’s at Emory spoke to me, and both felt that I could end up with a permanent trachea or feeding tube. I have less than 3 weeks to get back to work, or I lose my job. :frowning: Based upon the time, I’m stuck trying to treat the symptoms. Very frustrating.

I hope you are having a great day,
Crystal

I’ll be holding good thoughts the “Dizzy Dr” can help get rid of the dizzies - ugh!
That’s so unfortunate the location is ‘inoperable’ & too risky to consider surgery.
Let’s continue to hope the brilliant minds of the neurosciences will find better ways of treatment & yes, a cure!
In the mean time, keep up your beautifully positive spirit! :slight_smile:

Hi Crystal
I sure hope the dr. can help you. I live with vertigo that comes and goes when it feels like it. When I get it, it lasts for a few days. I have a script for it but, it doesn’t do much for me. I have to lay down and rest a lot. The dr.s believe it comes from swelling in my brain but, they don’t really know. I go to a chipractor and that helps me more than anything. Go figure :slight_smile: Good Luck.
Ben

Hi, Here4u2. The location of your bleed, as well as the visual issue, can induce vertigo. Mine (located at the brainstem and have visual issues too, as well as been a sufferer of relatively recent sinus infections - even after Sinusitis surgery) did cause me to have Vertigo. I’m not certain if it was because of the bleed itself or the visual issue that prompted the Vertigo; however, my neurosurgeon prescribed me a pill to take for it. (I’m not big/keen on constantly taking meds. myself (although I find NOTHING wrong with people taking meds. that are needed); however, I began taking my Vertigo pills about an hour before I’d go to my rehab. appointments (so the medicine would be in my system by the time I was doing my rehab.) and it helped. (My Vertigo was not completely resolved but the medicine did HELP by reducing the vertigo to a ‘tolerable level’.)

Like Ben, I too have vertigo that comes and goes. Sometimes it’s worse than other times. I was sent to a balance therapist who basically made me do things that made me dizzy. I guess the thinking was that my brain would train itself to kind of get used to it in a way. It didn’t really help. The meds. that are prescribed usually make me worse so I choose not to take them. I would love to hear what the dizzy doctor says! Please share and good luck!

hi ive had for 4 yrs now 24/7 its schocking!(just found avm so dont know if related)
Get vestibular tests/caloric tests. Do you have migraine/headaches? Vertigo is either central or periphal, you need to find out which. Do you have ringing the ears? high pitched or low pitched? Do a low salt diet. If you have migraine check out mvertigo.org Pls ask me any questions if you need

rebe,
I'm curious why you asked about ringing int the ears? I have recently started to have this in addition to migraines, bouts of partial blindness and vertigo...I'm getting good at trying to ignore symptoms since every new one was bringing me to the neuro and they never gave me answers.

Any info you have would be great!

Holly

Hi holly, i ask about ringing/hissing etc in the ears b/cause its often seen with vertigo. Vertigo is hard to diagnose ie menieres,mirgraine ass vertigo(mav), labs etc. Often people with migraine can suffer vertigo, i used to have killer migraine no vertigo, now i have constant headache with vertigo and hissing/ringing. i had bad nstagmus(eyes moving uncontrolled). High pitched ringing can indicate migraine vertigo, low pitched can indicate menieres. I would say low salt diets are recommended for both. Mav is treated by trying to stop migraine with daily meds ie inderal etc i havent had many meds that work/i could tolerate. I would say the eyes are avm related. Ask yor neuro if it keeps on about mav, see http://www.mvertigo.org/forum/index.php you dont have to join to get info. heaps of info including drs. Dr hain in us has a site you can google it. just add me as a friend if you want info, thanks bec(aus)

I'm not sure where to start... Had dizziness or vertigo since the surgery at the end of 2006. Had nausea as well but that went away. My AVM was found in the Cerebellum (the center of balance they say) so I really didn't question it. Maybe I should have. Anyway, like Trish I too am interested in what the "Dizzy Doctor" has to say. Looks like you posted this back in September being almost December, did you have your appt already? If you already posted this elsewhere I apologize... :)

Ya, ive got the spins too. I have a cerebellar vestibular disorder after my bleed and craniotomy. Usually I just feel off or light headed but sometimes its full out room spinning or almost a dropping sensation that last seconds. doctor said Its part of the 5% deficit I'm left with and it probably wont go away. Didnt give me any drugs for it so I have nothing to offer there. I'm just trying to live with it even though when it happens it scares the heck out of me. wish I could be more helpfull. Hope yours goes away.

I am sorry that I haven't been on here to answer. I went back to work in October, and have been trying to embrace the new doors that opened. However, I have found that not everything is going away, and I am still left with doubts, fears, and confusion.

I had an appt set up with the DR two seperate times. The first time, the dizzy DR canceled and referred me to a regular Neurgo (not the neurosurgeon, but wanted me to see a regular Neuro). So, I went to see her, and she wanted me to go see the dizzy DR. In the midst, she prescribed the Meclizine med that helped tremendously! If I don't take the meds, my whole world starts to spin again. However, I think my body is getting used to the meds, because I feel immune to the med and the help it was giving. I can now take the meds, but I still feel dizzy. The second appt was made in the midst of all of that with the dizzy DR, but I was back to work and frustrated with all of the "back and forth" with the Dr's. I was so frustrated that I cancelled the appt and just kept on the course I was on.

Now that my body seems to be growing immune to the Meclizine, I think I'm going to have to go back to the Neuro, and get a new referral to the dizzy Dr.

I truly thought, at one point, it was all going away. Or, maybe I was so excited about getting back to work, I was ignoring the signs that it was there the whole time, and I was just pushing myself. I have been called "stubborn" by many through all of this, and that my "pride" is what will hurt me in the end, lol. They are right on both counts. :)

I will keep you all updated as I make the new appts. Thank you all for the information you have given. It has helped me greatly, and I pray this thread has also helped others in the same situation.

love to all,
Crystal

Hi Crystal. I am still praying for you!! You are a Steel Magnolia…you will survive!!!

Hi here4u2 - One of my initial diagnosis was vertigo - but my fear of falling has lessened quite a bit - still there somewhat, I'm guessing to keep me on my toes.

I'm very interested in this dizziness doctor - I could probably use a visit to the dizzy doc...nothing to do with vertigo =) "Vertigo" is not a thing on my forefront of issues, so I conveniently put it in my "blah file"...it's getting quite large, unfortunately.

I hope you find a long term solution. My bleed and surgery were in 2000 and I suffered from vertigo/nausea as an immediate symptom. I was prescribed meclizine and chose not to take it so I could return to work right away. Oddly enough, over time it has become my new "normal" and really only bothers me on "bad" days(pressure changes, sinus issues, tired,etc.). I now take Bonine(similar to Dramamine but it does not make me drowsy) to reduce the dizzy/nausea feeling. I know it does help right now but your body will become used to it and you will learn how to compensate. Hope that helps!!

hia isnt it awful the feeling of constant vertigo and dizziness i had a bleed from the avm about 19 months ago and had a op to remove the avm but i am left with constant vertigo i am going through rehab excercizes for this at the moment but after 4 months i still have no relief!! i am learning to live with it but i am a changed person as i am slower and cant funcion alone and thats hard when husband works long hours but i do all housework although slowly now oh what a shame it is unbelievable when you have been fit and energetic going swimming, gym, shopping,cooking, working as a carer. hope it has worked out for you as i see you posted the mess on sept 20th 2011 . i had my bleed 18th nov 2010 avm removed 1 week later at back of brain but am left with this horrid vertigo so we will see after the rehab excercizes have finished. good luck with all hope to hear some good results!!