For the past few weeks I have some intense headaches, so bad in fact that I went to the doctor. I told him that I was under a lot of stress lately and wondered if that was the cause. My blood pressure was okay so I knew it wasn't that I had written a post about headaches caused by blood pressure before. I also knew it wasn’t a sinus headache because of the location of the pain. He wasn't really sure what it was but I believe its stress. The doctor gave me a muscle relaxant to see if that would help. I have taken it for about a week but it hasn't done much good. The thing that is bothering me is that my attacks have been worse, leading me to believe that the headaches are having an adverse effect on my Meniere’s.
In the past I have written about the connection of migraines and Meniere’s disease. Migraines are more than just bad headaches and I don't believe that I have a migraine, right now. The headache I have feels like pressure is pushing down on my head rather than the throbbing pain of a migraine.
Granted it could be just all the stress that I'm under right now. I just don't know. I'll give it another week and see if the headaches go away before I go back to the doctor.
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Sunday, January 2, 2011
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Hi David~
I have also been having major headaches for the last month or so.
They graduated to what the Dr. says are "vertiginous migraines",caused by the Meniere's.
They treated with migraine meds, and it helped, but only the headaches that were on the bad ear side. The other headaches I experience are full head, with some sharp stabby feelings, and electric shock-like feelings. Do you ever get those?
I met with Dr. Duckert at UW Med Center, and due to the worsening Meniere's not responding to diet or med's after 2 1/2 years, I've decided to have the Endolymphatic Sac Decompression surgery done.
If anyone has had it, and can let me know what the recovery is like, I'd appreciate it!
I just can't take much more Meniere's.
Trying to keep my chin and my hopes up despite it though! You do the same, and I hope this is the year for all of us to get some help with Meniere's! Happy New Year~
Lauri
I remember I went through a phase of feeling a lot of pressure in the top of my head, especially when I was out doing things, even just going to the shops. It tended to be better when I could relax at home. I wouldn't say it was headaches as such, and don't think I was having attacks at that time, but we're all different.
It might just be another one of the changing symptoms of the disease. I've learned that different symptoms don't necessarily mean you're getting worse, they can mean you're getting better. I think it's also possible to not notice when symptoms go away so it's not just a case of more things going wrong!
I am a 36 year old woman and I was diagnosed with Meniere's in 1995...It has been off and on and it again was diagnosed to me in 2005 by a totally different doctor. (I was in denial I suppose and it was off and on so I had hoped the first diagnoses was incorrect)
I have turned into a person who can barely ride in a car because of motion sickness, yet I can really only drive during the day because my depth perception is so off....I have 20/20 vision....but the lights and motion make me feel so out of sorts. I am constantly messing with the windows so the pressure will help whatever feeling I'm having at the time! It makes me anxious and then my head hurts, my heart is racing by the time I get home and I'm exhausted like I have been in a near accident!
I avoid driving at night, but found myself stuck doing it last night coming home from my family holiday get-together. 1hr drive on country roads....then highway. You think the highway will feel better....but its worse with the constant speed and lighting and other cars headlights.
Anyone experience this?
Vascular Loop
Hi David, Im not sure if you will be able to view this post (not quite got the hang of it) but I have found some interesting information thats not been covered on your blog yet. Ok basically I've had the full blown menieres symptoms (unilateral left ear) for just over a year, had various tests done, but something has been bugging me since I last saw an ENT consultant. On my last visit he told me I had an abnormal vessel pressing on my inner ear (which they had failed to tell me before!) but he wouldn't operate as its too close to the brain, and it probably wouldn't cause my symptoms anyway. However, I've done a little research, and found that its something called a vascular Loop which compresses/damages the VIII cranial nerve. I also found some studies, which are quite old (during 1990's) where menieres patients had this Loop and underwent micro-vascular-decompression and vestibular neurectomy, after-which they were vertigo free, tinnitus significantly reduced and in some even hearing improved. I don't know if anybody else knows anything about this, or has information to share on the issue?
David, I've also noticed more headaches lately, particularly since the laby. I wonder if it's connected in my case to the inflammation the doctor noticed a few weeks ago? I took prednisone for a few days, then went on a steady diet of vallium to suppress my whole system and allow for a "re-set," so to speak, but I can't tell yet if it's helping at all. I'm not getting full-blown vertigo or nausea at present, but will that still be the case when I go off the vallium???
I remember when I spoke to Dr. Della Santina he mentioned work he has done on migraine-associated vertigo, and I am going to reach out to his assistant for some information he mentioned back then. Perhaps it would be helpful... I am starting to wonder about this myself. Yet I don't have the classic migraine symptoms... just headaches. Sometimes they are pretty bad, but I never have the "aura" or photo-sensitivity. So I'm confused.
To the woman who mentioned driving, I agree totally. The motion of other cars and the appearance of movement in the scenery really sets me off. I don't drive long distances any more, and I never drive on highways. Riding on highways can be bad, but often I simply close my eyes to get rid of the visual stimuli.
And to Lauri, who said she can't take much more of this disease, I can only say... I'm right there with you.
I have a question: Is anyone else suffering from nearly paralyzing depression and fear? I am so confused. I feel like I don't even know who I am any more. Nothing I thought I knew about myself is the same now. And it's getting into every aspect of my life. How the heck do you cope with the emotional wreckage this damned disease creates?
Hi Lauri,
That is interesting about the vertiginous migraines although I don’t think that my headaches are migraines but then again I am not sure.
Good luck on the surgery, hopefully it will help with the meniere’s attacks and I hope that this year is good for all of us.
good luck again and let us know how the surgery went.
David
Jeff,
Good point! I agree that changing symptoms doesn’t always mean that you are getting worse. Atlhough I will certainly be happy when the headaches are gone
Thanks
David
Hi,
Problems with driving from what I understand is different from person to person with meniere’s. Be very careful and don’t push yourself to drive this will only cause stress and make you feel worse.
Thanks for writing and keep in touch
David
Hi Becky,
I don’t think that I have heard of the ‘vascular loop’ before. It sounds interesting I will have to do some research on it.
Thanks for information and comment
stay in touch
David
Hi Peggy,
Depression is a big problem with meniere’s disease. It can turn you into an emotional wreck. If it gets too bad then counseling might be an option.
Continued good luck with recovering from your surgery Hang in there.
David
Hi David~
I Hope your headaches are easing.
I'd like to send a shout out to PEGGY~
Peggy, I too have been having frantic panic type attacks lately; sometimes I feel that if I don't hold on tight to my sanity, that it could slip away. I try to do slow focused breathing through it.
I don't know who I am anymore either, ( but I miss me) because the person I was and the Meniere's can't function as one and do the things that used to be my daily routine. My life.
For bad Meniere's sufferers new reality is having to worry daily about whether we think we can safely get from one errand to the other, or even the back of a store to the front and out the door. Can I hold my child safely?
Am I able to drive today?
Having to stop a job we loved so now there is a constant overriding worry of how to pay bills..
Not able to go out with friends because the sound in the restaurant is very loud and distorted and tends to set off a visual and vertigo attack. Bumping into things, droppping things, falling, and dear Lord..the vertigo and tinnitus! (it's so odd that I'm losing my hearing, and yet crave just one hour of silence!)
For Meniere's people, it serves to reason that anxiety is impossible to avoid.
But...and this I feel very strongly about...I don't have an "anxiety disorder or mental problem"...I have Meniere's. It's a disease that brings with it great anxiety.
That's it. Not for the faint of heart.
This is my new "norm".
I had to accept and deal with it, then fight back, and also allow myself the occassional serious crying, poor pitiful pearl breakdown,(of course I hide in the bathroom for those) in order to be strong enough to come out the other side and deal with it all over again, praying for good days.
I relate, Peggy, to the emotions you are having..me too!
This is a darn scary disease!
I just keep pushing hope back up to the surface that the next thing tried will work.
I also feel a truly new appreciation for life and Family through this all, that I took for granted before.
I am glad I found David's wonderful site...There does not seem to be a Meniere's support group where I live.
We need and deserve support, just like any other disease.
Thanks David!
Hang in there everyone~
Lauri
Hi there, I can also relate to what everyone is saying. Im 23 and had this horrible disease for almost 2 years, although Ive had constant symptoms since april 2009. I feel like nobody understands what its like and that my life is over before its even started. I found myself just sobbing this morning, thinking how did I get here, and it doesn't seem 2 minutes ago I was totally fine, and never even heard of menieres. My ENT said it will burn out, but it might take 20 years! So thats just great. I know a few people who also have it, and they seem totally ok now, but they've had it for much longer than me, so maybe it gets better as time goes on. I study pharmacy at university and Im not sure if I will be able to even finish my degree, at times I just want to quit everything. I guess we have to hold on for good times and hope it gets better and they start to find better treatments. I just keep telling myself that there are worse conditions out there.
Anyway, David heres some links to the vascular Loop (I can't pull up the full article, just the abstract) :
http://www.ncbi.nlm.nih.gov/pubmed/6660744
Vascular loop as a cause of vertigo.
http://www.britannica.com/bps/additionalcontent/18/28095587/VASCULAR-LOOP-AS-A-CAUSE-OF-VERTIGO
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1656475/
Vestibular Neurectomy and Microvascular Decompression of the Cochlear Nerve in Meniere's Disease
The last one is very interesting, all patients had control of vertigo!
I think everybody with menieres should ask whether they have a vascular loop on an MRI and I know there is a surgery for this! Even my useless ENT said it would help the tinnitus! Im definitely going to push for this next time, and Im also thinking about going over to washington eventually and paying privately for treatment! Here in the UK the ENTs (I have seen anyway) are utter crap, and don't have a clue what they're talking about! I definitely think America is the way forward!
Becky
Becky,
See if you can get referred to Mr Burton at Oxford John Radcliffe Hospital, your GP should be able to do it even if you are part of a different NHS trust. I had some consultations with him last year and he definitely knows what he is talking about.
(Where do you live, maybe we could start our own UK support group?!)
Thanks everybody for the comments
David
Hi Jeff,
Im from the West Midlands (Stoke-On-Trent). I will book an appointment with my GP and ask for a referral - thankyou. I don't know what to do anymore. I think thats also a good idea, setting up a UK group!
Becky,
I'm in London but I do enjoy visiting Birmingham occasionally!
If you click through from my name to my Blogger profile you'll see a link for my email address (don't want to quote it directly because of spam bots etc.!). Drop me a line and I'll tell you more about the process I went through with Mr Burton.
Hi David~
I recently heard some people with Meniere's have had positive results taking an anti-viral medication. (acyclovir)
Have you heard anything about a correlation between a herpes virus and Meniere's Disease?
Thanks!
Lauri
Hi Jeff,
I can't access your e-mail address for some reason, but mine is: beckylouise.barker@googlemail.com If you could tell me about the process it would be greatly appreciated.
Lauri,
L-lysine also acts as a anti-viral. There is a study which shows patients who took 3 tablets a day (of 100mg each) their viral herpes infection responded well. You can buy this from most health food stores. I take 1 tablet a day (1000mg) and my symptoms are much better than last summer. I get short vertigo now every couple of weeks, as opposed to almost daily. I think it takes a few months to get in your system, but its worth a shot.
Becky
Becky~
Thanks for the info!!
I began taking the 1000mg L-Lysine 3 days ago.
Figured I just wouldn't mess around and went for the higher dose.
I have already noticed a slight difference in the "stuffed full of cotton" feeling in my head.
Hopeful sign!
How long have you been taking it?
I'm not sure about side effects...wondering if you can only take it for so long, and then have to back off for awhile?
Thank you!
Lauri
Lauri,
As far as Im aware you can take it long term, as its a supplement. Ive been taking it for about 4 months now and Ive definitely seen an improvement, wether its the menieres burning out or not, Im not sure (Ive lost most of my hearing on left side). My friend also started taking it, as she suffers from cold sores (also herpes virus) and she's had fewer problems too! The only other thing I was told was to take it on an empty stomach, so it binds to the virus. Next Im going to try Lipoflavaniods, as Ive heard these can be very successful in menieres.
Becky
Becky!
I had alot more dizziness today, and it would feel like I was going into vertigo..but then it would back off. Did you experience that?
I also just heard about the Lemon Bioflavanoids, and do plan to try them.
The headaches/migraines lately are killer, so I'm hoping the Lysine and Flavanoids will help there too.
Good Luck!
Lauri
Lauri,
I definitely do experience that, feeling like Im about to spin, but it doesn't. I used to get it more than I do now, and I've found so far that my attacks are much shorter, and less frequent. I believe that with menieres symptoms they get a lot worse to start with, then things start to improve after while. I know it is extremely difficult, but try to stay positive. Ive got to a point where I do nothing but think about the menieres and I look out for symptoms. My main problem now is the anxiety its created, which I need to try and get out of. Hopefully this will also get better in time. Hope things improve soon for you.
Becky
Interesting stuff about L-Lysine... we have that in the house, and I will give it a try. I hope it helps, because I've been feeling more inflammation in the affected ear recently.
@Lauri - Thank you for saying all that. Meniere's really plays games with your mind. I find I doubt myself all the time, even when someone or something else is to blame for whatever is going wrong. You second-guess everything you do. Dreadful, in every sense of the of the word.
Hello I'm 41, and I have been told I have a vascular loop. I get the vertigo systems and terrible headaches. Sometimes I feel like I'm going crazy, my mind thinks what it wants to. I drive a school bus so its really hard for me to do my job with this condition. I've never been told I have meniers but after reading your blog I believe that's what I have.
Hi,
I would definitely have a doctor check it out.
thanks for the comment and stay in touch
David
Driver65202, Meniere's is a possibility, but a vascular loop can cause many of the same symptoms. Here's a link to what Dr. Timothy Hain has to say about it:
http://www.dizziness-and-balance.com/disorders/unilat/microvascular.htm
Are you being treated for it? I assume you saw an ear/nose/throat specialist, since you got a diagnosis of vascular loop, which is not something a general practitioner would tell you.
If I were you, I would either go back to the doctor who gave you that diagnosis and ask about treatment options, or see another ENT specialist for a second opinion. But as a driver of a school bus, I think you should definitely explore this problem more and see if you can get some help with the symptoms.
Good luck!
Yes I have seen an Ent and he couldn't figure out why I had vertigo for seven months, so he sent me for an MRI. I had the MRI done and was told by my ent nothing was wrong I just had migranes, so I went back to my pcp who referred me to a neurologist who also said migranes but I insisted it was more. So finally he looked at my MRI and said I had a loop, but it was no big deal lots of people have them and don't even know. He put me on gabapentin and ibp but it still doesn't help. I feel like I will never be normal again.
I know the feeling (about never being normal again). Are there other ENTs you could visit? When I was diagnosed with Meniere's, they did an MRI to rule out tumors as a possible cause, too. Nothing there, fortunately.
There is such a thing as migraine-related vertigo. Dr. Charlie della Santina has done work in this area. In fact, I was in touch with him about getting some information on this sent to me. I'll reach out to his office again and get it sent out, and maybe I can post some of the information here.
Man, I can relate to so much of what I've heard here. One thing that's jumping out at me is that a few of you have said that Meniere's could get better--that is something I haven't really heard yet. The ENT who diagnosed me basically said it's progressive and incurable. He also suggested I see a neuro-otologist??? not sure if i even wrote that correctly, sorry. Anyway, I never went b/c I have no health insurance and pay out of pocket for everything. I figured why bother, there's nothing they can do. But now my symptoms are getting worse, including those heavy pressure headaches David mentioned in the post. The weird thing is that rather than having the severe vertigo, now I'm just having mild vertigo almost all day and always have pain and/or pressure in my head. Sometimes the pain in my head is so bad it wakes me up out of a sound sleep. I used to get migraines years ago but it's not like that. The pain seems to travel down my neck and I often get the sensation that my throat is closing up. WTH?? It's almost comical. This disease is so crazy. Also, wanted to say to the gals who mentioned depression and anxiety, that I can totally relate to that as well. It's not fun having to give up activities that were once part of my daily routine and makes me feel older than my age (45). I think what this disease needs is a celebrity to come down with it so it will get the recognition and $$ for research needed to really come up with a cure. It's great to hear from others who understand though, so thanks :).
Susan
SUSAN~
You are not alone with the pain in the head and down the neck, and the weird feeling in your throat.
I get that too. I told the Dr., but it was just dismissed as something other than Menieres. That's BS though, because it began only when the Menieres did, so I know it's from Menieres.
The first ENT I saw told me that it would soon "burn out". He was wrong.
It never has..just kept getting worse.
Maybe in 15-20 years it might burn out, which means 15-20 years of intollerable vertigo?! Worthless information then. We need help now.
Hopefully we can all find something that helps us get through it.
hello
my sister recently bought me this cushion called bed of nails "green sun pillow" from
http://www.bedofnails.org/
it is actually a cheap way of getting a massage around the neck and head area, i use it twice a week for 20 minutes. been using it for a while, i would reccomend it to realease some tension. (helps with migraines and headaches, hence helping with menieres)
regards
ali
Ali~
After reading your post, I had to check out the pillow.
Doesn't it hurt??
hello lauri
yes it does hurt, no pain no gain:). it really gets to the pressure points, and you get used to it. so after a while no pain.
regards
ali
I found it unsettling that the site warns you not to use the pillow if you have hemophilia or are taking anti-coagulants. I assume that means the plastic "nails" can actually pierce the skin?
But from a holistic point of view, the pillow is interesting. I wonder if it would still work if you put a towel between it and your skin?
hello peggy
all things is life have scary disclaimers, and you can put a t-shirt between you and the pillow.
regards
ali
Hi all,
I was told by my GP I have Meniere's,am thankful though that my symptoms aren't as severe as above. I'm wondering if anyone has experienced sound distortion when wearing earphones? (I can't stand using earphones at all but it helps with the tinnitus)However the music sounds very discordant through the earphones, as if it's constantly changing key. Sounds normal without earphones. I've only just admitted to myself that it's me and not the machine.
Hoping that you all find relief from your symptoms
Take care
Fynn
Hi Flynn~
I have the distorted hearing that you describe, but I don't need to have anything covering ny ear to hear it.
I find that I get the distortion the most if I am near loud noise, or many people talking.
ESPECIALLY restaurants with people talking and dishes clattering. It's terrible. Just a cacophony of sound.
You take care too!
Lauri
Fynn, I get that awful distortion in the ear that is almost dead. The other one is fine. I've been considering getting a really good earplug for the one that's the problem, and when I use a headset, I use only one side. Which means I can't use a headset that does stereo sound. Basically, my hearing has gone "mono". Is yours in both your ears?
Lauri, restaurants have become a new kind of hell for me. I've ruled out many eateries purely on the basis of how much ambient noise there is, and I've turned into a "little old lady" when it comes to dining out, because I will only go for a late lunch or early dinner. Crowds are the worst thing I face with Meniere's, because of all that NOISE.
Thanks Peggy and Lauri for your replies. Crowded noisy places are very difficult; I now avoid the staffroom at work and prefer to miss busy social occasions. I have tinnitus in both ears, left one's a waterfall and right one's a lawnmower, but I've become quite used to them both and can usually sleep through them now. I discovered the earphone anomaly when I got the second tinnitus and wearing earphones was the only way I could drown it out. But I would be singing along then realise I was slipping out of key (and I'm not normally tone deaf...!)and notes were sounding flat or sharp -sometimes so discordant it's impossible to listen to. My hearing isn't too bad - I was fitted for a hearing aid but the hearing loss apparently wasn't bad enough as I could hear the mechanism of the hearing aid, worse than the tinnitus! I don't hear low sounds, which unfortunately includes my husband's baritone voice :o)
LOL! "Waterfall" and "lawnmower" are the best descriptions I've heard yet for tinnitus! I don't mean to belittle your suffering by laughing, by the way, but that really struck me as funny. My tinnitus changes from time to time, and my favorite is when it sounds like one of those windchimes made out of tiny seashells, or like ice cubes cracking and tinkling in a glass of water.
On the other hand, it's very depressing to think I might lose my sense of pitch. I've been singing with a choir for a few years now, and I so don't want to have to give that up. I'll have to make sure to ask my best friend to let me know when I start to slip. :(
On that note (pun intended) I have found I do best in the choir if I sit at the far left end of the soprano section so I don't have anyone singing on the side of the "bad" ear. Otherwise, the whole choir sounds out of tune (well, that could be real, actually).
That's a shame about not being able to hear your husband's baritone voice well any more... I would hate to lose the full timber of my husband's baritone. Just as I dread the day when I won't be able to hear birdsong and a cat purring.
Peg said,
Just randomly got on this sight and am excited. Am a menieres patient, also thinking about getting the steroid injections, having suffered for a long time. At this point I'm wondering about getting on Disability, I'm 59 and the disease is taking it's toll at work also. I am scared of the injections because of maybe worsening the already horrible tinnitus that I have.
Hi Peg,
if the meniere's is making work difficult than you might want to look into disability at 59 it might be easier for you to get. I'm 53 and trying to get on social security disability right now.
As for the steriod shots I'm not quite sure how that will affect your tinnitus. maybe someone with had the shots will follow up.
thanks for the comment and keep in touch
David
I am 36 and have been on disability for Meniere's since I was 28. It did take a while to get, but we didn't know I had Meniere's when I applied. If you have a specialists and the tests done that show you have it, it is quite a bit easier to get. I am having endolyphatic sac decompression on the 16th.
I have done the gentimiacin injections and I am about 70% better from what I was (which I was not even able to walk by myself at all or read or anything at my worse). I am still disabled by it, but I am now able to go to school full-time and drive and shop in a grocery store! (a big deal comparatively) I am hoping to get some recovery further this treatment. It would be nice to have some more relief on top of this.
For what it's worth~I have not had the steroid shots, nor the Gent injections, but I will say this. I did have the Sac Decompression operation, (which unfortunately failed) and following that I have had much worse tinnitus. It really ramped up. It's always been 24/7, but it's louder now than before. Sometimes have it in my 'good ear' now too. All this after having the 'bad ear' worked on.
Interesting. Wonder if there's any correlation?
I know this doesn't happen to everyone with Menieres though.
Gentamicin didn't have any effect on my tinnitus at all. It cut down on pressure and balance issues temporarily, but that was about it.
Regarding disability, I don't think you can file while you are still working. If you were to be fired because of issues having to do with your Meniere's, then you should definitely file for disability.
But they are very strict. I cannot even work part-time or on a freelance basis during my application process, for fear of disqualifying myself right out of the gate.
Mind you, I'm not at all sure I CAN work, even part-time, which is why I'm trying to get disability. Once I qualify, I would like to try to find home-based work to supplement the disability payments. But be aware that filing is a very, very long process, and they will NOT make it easy for you.
I wanted to also say that I suffer greatly from migraines triggered from bright lights. My work has been wonderful by removing most overhead lights around me. But driving at nite and in the early morning was awful. Now my solution may not be for everyone so please take this as a suggestion only. I had a terrible experience one morning, almost hitting another car, because I was blinded by headlights on my way to work. I became terrified to drive when it was not daylight. My husband is a hunter and thought of the tinted glasses that hunters use for shooting - not the tinted sunglasses, but the regular glasses. We went to Gander Mountain that nite and spent 45 minutes trying on all the glasses in the store and looking up at the lights in the ceiling to simulate the lights of an oncoming car. I settled on two colors - my favorite turned out to be an orange color. Now I may look a bit hoaky driving down the road at night but I can see. This cuts the lights so they look more of a yellow-ish/amber color to me, without cutting my depth perception out. But I still use my judgement, if I don't feel safe driving, I am still calling my husband or son to come get me. I can't drive with oodles of lights coming at me so I use my brains about it. But I can drive into work early in the morning now instead of waiting until the sun comes up, or work late if I need to. This has given me some of my freedom back.
But really, use your own judgement. Just don't let this disease keep you confined.
Theresa, that's a great employer you've got there... I can't imagine too many being so understanding. And I like your solution of the hunters' tinted glasses. I also have problems with bright light these days.
I'm concerned about the link between Meniere's Disease and vision, which no one seems to talk about much. My vision has gone downhill quite a bit in the past two years, just since I developed the worst Meniere's attacks. I now wear prism lenses, so I'm not sure the hunters' glasses will work for me, but I do wear sunglasses over the prism lenses sometimes, when the glare is too much for me.
I'm glad you've regained some of your freedom. I'm working on mine. :)
I've had Menieres for almost 20 years and it's gotten much worse in the past few years. Within the past year, I'm now getting the added bonues of a headache (exactly described by someone above as something pushing on the top of my head.) I can't take aspirin, ibuprofen or acetaminophen because of more aggravation with vertigo. Has anyone found a pain reliever that ok?
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