For those of us that have FMD of carotids are headaches a continuing problem? I had a dissection last Nov.and still get hedaches. I’m onabloodthinner was on Topomax for prevention of Migraine/heaches Dr. just changed to Lyrica.I’m curious what kind of treaments others have had and how they are doing.I will be going to University hospiatl in Gainsville in about 2 weeks then the following week one at theU of Miami…Don’t feel that hopeful at this point…seems like they almost have to wait until something goes wrong again to do something.Does anyone else feel the same?I’m usually a positive person with all this health junk but I’m not feeling so positive now.
Lorraine
Hi,
I have had headaches all my life and I do not have FMD of the carotid arteries. Had FMD in the right renal artery. I was given atenolol 50 mg once a day and that has stopped the headaches 99%.
I think that sometimes we all get alittle down and feel “I’m tired of having these problems”. BUT through these past 30years of having FMD and teaching doctors about this and getting NOWHERE with the medical field I’ve turned myself mentally around and just keep on going. I know that one day this is going to stopped me from being able to do the things I want to do and need to do in my life but it will not stop me from having peace or joy. I learned that life is about choices. I can make my life better or worse by my mental attitude. YES, there are those days that I will start to think negative about my situation and get angry and all that other negative stuff but I try to stop that stinking thinking (that’s what I call it) and start thanking my LORD for what I have been given. I hope and pray that we all use our own resource to help ourselves control our own attitudes. I think that attitude is a tool that is able to help ourselves deal with all situation. I am not saying anyone here that reads this has bad attitudes just sharing my ways of dealing with things. I have lasted longer than the doctors in the 70’s told me I would last. I am going to be 60 years old alittle over 2 yrs. WOW! Maybe I should just say I will be 58 years old in January. Doesn’t sound as old. lol !!! I know one thing… mentally do not feel that old.
Have a blessed, peaceful,joyful DAY today, tomorrow and in your future. Someone use to tell me “Life is what you make it”. I choose to make mine peaceful within that helps me on the outside.
AGAPE LOVE TO YOU ALL,
Donna Faye
HI
Lorraine don’t give up, it will get better.
Life is what ya make it, yes, and sometimes it is hard to deal with what we are dealt. Sometimes I get tired too, and disgusted. Sometimes I wonder where is the end to all of this. But I realize what we go through is not always just for us. Maybe someone else, somewhere is supposed to learn a lesson from all this, a neighbor, brother, sister, doctor… who knows?
I have carotid FMD. Before surgery I was having headaches, and they were getting worse. After all was said and done, I realized I was having mini strokes. I had carotid endarterectomy on both sides. sometimes I still get headaches, I am forgetful, very forgetful, sometimes I act inappropriate in situations and feel pretty stupid afterward. . I still have a bruit on the left side, so I wonder if it was properly fixed. I have dizzy spells, lightheaded all kinds of symptoms. I have a 3 mm brain anneurism that I will have to have “looked at every 3 months” Is there an end? yea there is, but I am not quite ready for it yet. LOL.
I try to just keep a good sense of humor. I know that there is a lesson for someone, or maybe it is just so we can all have these little visits on here.
God does everything for a reason.
Great big hug.
GG
You are so kind Gina.The world wouldn’t be the same
without you. Thank you for being you and please don’t
ever change.
Beth
— GG fmd-cpt6719@lists.careplace.com wrote:
~-
-------------- sent
via careplace.com
~-~ GG posted the message below in the Fibromuscular
Dysplasia Forum.
~-~ The entire conversation can be found here:
http://www.careplace.com/forum/topic/6719
~-~ To respond to this message, reply to this email
or sign in to CarePlace.com
~-~ To start a new conversation, email
fmd@lists.careplace.com or sign in to CarePlace.com
~-~ To see GG’s profile, go here:
http://www.careplace.com/view/GG
~--------------- all
text below this line will be cut off in your replyHI
Lorraine don’t give up, it will get better.
Life is what ya make it, yes, and sometimes it is
hard to deal with what we are dealt. Sometimes I get
tired too, and disgusted. Sometimes I wonder where
is the end to all of this. But I realize what we go
through is not always just for us. Maybe someone
else, somewhere is supposed to learn a lesson from
all this, a neighbor, brother, sister, doctor…
who knows?
I have carotid FMD. Before surgery I was having
headaches, and they were getting worse. After all
was said and done, I realized I was having mini
strokes. I had carotid endarterectomy on both
sides. sometimes I still get headaches, I am
forgetful, very forgetful, sometimes I act
inappropriate in situations and feel pretty stupid
afterward. . I still have a bruit on the left side,
so I wonder if it was properly fixed. I have dizzy
spells, lightheaded all kinds of symptoms. I have a
3 mm brain anneurism that I will have to have
"looked at every 3 months" Is there an end? yea
there is, but I am not quite ready for it yet. LOL.
I try to just keep a good sense of humor. I know
that there is a lesson for someone, or maybe it is
just so we can all have these little visits on here.God does everything for a reason.
Great big hug.
GG__
To control the emails you receive from CarePlace, go
to http://www.careplace.com/account-notifications
____________________________________________________________________________________
Be a better pen pal.
Text or chat with friends inside Yahoo! Mail. See how. http://overview.mail.yahoo.com/
Lorraine,
I have carotid FMD and had dissections of the right carotid and right vertebral in Sept. 2003. I have been dealing with headaches ever since. My neurologist finally came up with a combination of drugs that does work for me. I take Zonegran which is an anti-seizure med and Nortriptylene which is an anti-depressant. I was originally on Depakote for the spasming arteries, but I had horrible side affects. My doctor changed to Zonegran, and I tolerated it much better. The migraines were better, but I still had less intense headaches. He then added the Nortriptylene and the headaches pretty much stopped all together once we found the right dose. It was amazing! In May, he decided to try to wean me off of the Nortriptylene, so he began to lower the dose. After the 2nd drop, I immediately got an intense migraine that sent me to the ER. Needless to say, we went back up on the dose and have remained there. I currently take 75mg of Nortriptylene and 100 mg of Zonegran.
I am also on 325 mg of Aspirin and Nadalol for blood pressure. I do still have a bruit in my right side. I have MRA’s done twice a year to monitor the carotids, but other than that they pretty much just wait and see what happens.
Good luck to you! I know it is frustrating, but keep talking to your doctor and don’t be afraid to see someone new if you feel like you aren’t getting the answers you need. Take Care!
Sheila
planetlucy fmd-cpt6719@lists.careplace.com wrote:
I too am on Lyrica, but for fibromyalgia and not headaches. Sometimes I wake with a headache in the morning.
I have noticed that my bruit is getting louder lately. I have a respitory/ear infection right now, and the left side of my head is numb, I dont know if it is because of the ear infection , I think it is becuse it developed at the same time.
I would think if a person has a headache and has fmd of the carotids, they should tell the doc, make him look real close at this problem.
I think since my bruit is getting louder, I will go back to the doc after christmas.
GG
I am 30 and was diagnosed with a left sided carotid dissection last year after hearing a very loud pulse in my ear for months. After an angiogram they discovered I have fibromuscular dysplasia. I have many headaches which I never associated them with this. I was on plavix for a few months but developed too many bruises so they took me off and put me on asa, was on asa for 6 months and they decided I could stop this. I have to have an MRA every 6 months to watch the dissection because it formed an aneurysm. Now I have noticed I sometimes get blurry vision and lightheadedness, once have felt like I was going to pass out. The doctors dont seem too concerned, Im not sure whether to worry or not. No one has checked my kidneys or anywhere else, Im not sure whether they should. Does anyone know can this disease progress elsewhere? In the meantime I have 2 children ages 4 and 8 so I stay busy and just try not to think about it, but now with getting dizzy it is bothersome. The doctors dont seem to worry unless I am having neurological symptoms. I also get sharp pains in my head but only last a few minutes and pain in ihe left side of my neck also not very long. Sometimes my left ear will ache for awhile. But so far I resume all normal activites to my best, just told not to lift weights or anything heavy.
Hi, I’ve been reading this forum for months, and appreciate all the information shared. AID inspired me to respond, because I also had a spontaneous dissection of my left internal carotid artery. It happened 10 years ago, on Christmas day, so of course I ignored the symptoms until the next day. I had a sudden onset of a very loud “whooshing” sound in my left ear (which I later learned was “pulsitile tinnitus”), and every time I leaned over, bent down, or moved my head a certain way, I would lose some or all of the vision in my left eye. When I called my doctor the day after Christmas, he told me to go immediately to the emergency room, as I could be having a stroke. And there started almost 3 months of visits to various ophthalmologists and neurologists before I was finally diagnosed by a neuro-ophthalmologist. The first neurologist I saw put me on a fairly high dose of Prednisone (before he had a clue what I had) because the pressure in my left carotid was so high. He felt I had either an aneurysm or a brain tumor (I have a sister who had a brain tumor) and he ordered an MRI and MRA the next day. And I could have had a diagnosis right there, if it hadn’t been for an incompetent radiologist. Instead, he said my carotids were “completely normal” and I went on to see many more doctors, had thousands and thousands of dollars worth of needless tests, and finally in March got sent to the neuro-ophthalmologist, who said he had told my original neurologist almost 3 months before that my symptoms sounded like a dissected carotid. He told me I had FMD, put me on one aspirin (325 mg) a day for life (I was off Prednisone by that time), told me to never let anyone touch my neck, or lift anything heavy, and redid the MRA and said the dissection was no longer apparent, tho I have the classic “string of beads” in 2 places on my left internal carotid, and 1 place on my right internal carotid.
I have been lucky not to be plagued by headaches. My left neck frequently feels like what I describe as sluggish blood flow, is sometimes painful, and if my neck gets even a little cold, I can feel my carotid spasming. (I wear turtlenecks about 325 days of the year). My left eye sometimes feels numb, swollen (even tho it isn’t), and as if I have something in it, or stabbing pain in the lower half, and occasional visual disturbances. I have had dizziness my whole life, and vertigo the past 25 years or so, which no doctor ever seemed concerned about, and which I now blame entirely on FMD.
To say “doctors don’t seem too concerned” could be the understatement of the year! Most of them dismiss my symptoms as unimportant (and who knows, maybe they are), and seem to have no answers when I want to know, where is the point when these symptoms are a warning sign of something serious that shouldn’t be ignored? No one has ever suggested looking anywhere else for possible FMD in other arteries, or regular MRAs to track my carotids. (The doctor who diagnosed my FMD died several years ago; he was the only one that had any info on FMD for me at all.)
Meanwhile, I’m careful about my neck, keep it warm, deal with the dizziness, stop what I’m doing if it makes my neck start pounding, and go on with my life, feeling very fortunate that I have been spared 99% of the serious challenges that so many others with FMD have been forced to deal with.
Thanks to all of you for sharing your stories here—they are an education and an inspiration for me, and many others, I’m sure! Sue
I am a regular poster on yahoo fmd site. My story sounds a lot like yours. You need to be checked for brain aneurysms. I have had 2 annies burst and I have 2 that get onitored. One is on an artery that will affect eyes if ruptures. Write me and I will eplain.
----- Original Message -----
From: “sjb” fmd-cpt6719@lists.careplace.com
To: dbuck5@embarqmail.com
Sent: Wednesday, January 16, 2008 1:29:34 PM (GMT-0500) America/New_York
Subject: Re: [fmd] headaches
Thank you Sue for responding. It is nice to know that other people have experienced this. I dont think doctors are very aware of FMD. I have been told to have an MRA every 6 months maybe because of the aneurysm formation, the dissection is above the base of my skull so you can not hear a bruit. I have been told by others and with reasearch that other arteries can be involved and they should be checked. As of when to go to the doctor it seems to me unless your having a stroke dont bother. Ive told them about the blurry vision, dizziness, and headaches, nothing has been said. Anyways thanks for the reply, its nice to know I am not alone.
I studied everything on the web and talked to the other fmd members. Can you call Me? email hestermel58@yahoo.com and I will give my number. There is tooo much to say to type it all
----- Original Message -----
From: “AID” fmd-cpt6719@lists.careplace.com
To: dbuck5@embarqmail.com
Sent: Wednesday, January 16, 2008 1:50:03 PM (GMT-0500) America/New_York
Subject: Re: [fmd] headaches
Hi my name is kari, I have fmd of the carotids and small aneurysms. I
am on my way to NIH but will email when I get to a computer 
Sent from my iPhone
On Jan 15, 2008, at 11:09 AM, AID fmd-cpt6719@lists.careplace.com
wrote:
lucy - i think headaches are the hardest symptom for doctors to treat - the topomax is probably not a bad idea to prevent the headaches- I am not sure about the lyrica. But if you have not yet, I would also reccommend you get good imaging of your cerebral arteries - the internal carotid, vertebrals and all those in your brain. 3-d CT angiogram seems good (or MRA is you are not a candidate for the angiogram imaging- MRA is not a sensitive for FMD).
And most importanly get a serious and experienced neuroradiologist to read them. My first reading of my films were “negative” I asked a neurologist who images the brain, and a neuroradiolgist to review my films and they found evidence of FMD in my middle cerebral and internal carotid. Dr Olin confirmed the invovlement of the internal carotid with highly skilled technician (sue) who does his coratid dopplers. A local technician did not pick up any problem with carotid doppler - so the skill of the technician and ths skill of the MD reading films is ciritical.
I highly reccommend you get multiple readings of any of your films, and repeat any negative results on dopplers with a very experienced technician.
And of course do not hesitate to go to the ER with “the worst headache ever” it could save your life.
I hope this advice is relevent- for your personal situation, it is best to ask the opinion of a physician familiar with FMD