Is there any certain neurologist to see?

HI Hayhue

You are right, it can get pretty dark at times.  what i find odd is that on the days where its not as bad, there is no anxiety at least not until i start to think about it.  On the bad days it seems s if there is no hope. but I  continue to pray and tried to find some silver lining although its hard on these days.  Being afraid all the time and worrying about this all consuming, it seems its the only thing I think about.  I'm to the point where I don't even like people asking me how I am because it causes me anxiety to talk about it.  Its very hard spending all your time wondering whats is next in all this.  I wish i wasnt such a detailed person who looks at every little thing and sensation and gives it so much attention.  I do thank you so much for your believing i'm strong enough to wether this.  Coz boy there are days where I just don't know. 

Hi Patty,

?I have read many of your letters and feel badly for you.   First of all, I don't think you're nuts or a hypochondriac.  I do think that you have issues with anxiety however, and that in itself can exacerbate any problem.  You have often mentioned your neck/shoulders bothering you.  Have you tried chiropractic or seeing an osteopath?  Do you ever go for massages or sit in a steam room?  Tried yoga?  Because your symptoms seem to come and go, it sounds like they may be reactionary to stress.  Ever seen an acupuncturist?  Are you able to keep yourself on a small dose of Valium or Xanax for awhile to see if it can make a difference?  I agree that weather changes can set off some of these problems, and if you are prone to migraines that can too.  I have figured out that if I wake up and experience vertigo, if I somewhat hyperextend my neck it will stop it.  I only seem to get those spells when my neck/shoulders are sore and tight. 

?Hope any of this helps.  I mentioned before that I still wonder if some of us are dealing with undiagnosed Meniere's.  Try and follow the advice for that condition, and remain as calm as you can.  Take care!

Hi nanci

Thanks for your reply. I think your right about the anxiety, I do have generalized anxiety disorder and normally it ok but since this started its been awful, it's because I'm so afraid of disease and I know that sounds crazy but it's the truth. I never thought about reactionary stress but I was stressed on Monday and by Wednesday I had crazy falling feelings and the headache. The neck and shoulders always ache when I'm stressed and worse web anxious. I had a 3 month session with a chiro to work on my posture because I had head forward posture and it helped, but I can't afford to go every week now.

About Menderes isn't that a spinning type of dizzy?

Meniere's can begin with vertigo, but then one may not have another episode for a long time.  From what I've been told, the dizziness from Meniere's can come on without warning, and a person could collapse to the ground.  The other issues with Meniere's are the feeling of fullness in the ears, tinnitus and hearing loss.  I deal with those symptoms, but was told it wasn't Meniere's.  So, then what??  I have also read that Meniere's is difficult to diagnose.  I feel like the whole issue of dizziness is complicated because so many things can cause that.  Balance is affected by your eyes, ears and bottoms of your feet - that "grounding" feeling.  But problems with the SCM muscles at the back of your head/neck can make you feel off balance too.  That head forward position you described is so common now with so many of us on the computer etc.  I know it's scary and stressful, but try and remember "bad things" don't come and go - they stay!  Try and relax your shoulders, control your breathing, and keep your environment as calm as you can.  That isn't "the cure" but can make living with these issues easier and less stressful. 

I told my ENT I had all the symptoms of menieres and my dad's side of the family had a history of it I just found out. He said not only is it hard to diagnose but years ago they blamed all dizziness on it. Kinda blew me off. I know of 5 people now who where told they have it in my family. I never knew. Parents divorced 48 years ago. Don't have contact with that side of the family. Only found out when my aunt contacted me about a family reunion. Told her I can't. Dealing with a bad episode of vertigo.

For me the valium/diazepam helped alot with both the dizzy and anxiety. Problem is you build a tolerance to the low dose fast. And I was told the low dose works . High dose doesn't. So upping the dose won't work. Asked about it yesterday at docs office. It used to stop the vertigo and dizzy spells in there tracks. Now it barely takes the edge off. If you have to go to vestibular rehab, it hinders the rehab. So you can't take it at all. I have to go to rehab. No idea how I am going to be able to take the car ride to it more less the rehab with no meds. Plus add the anxiety of knowing doing this with no meds will be real bad. Makes the whole thing even worse.

Hello Waffalobill,

?I'm sorry you're having such difficulty.  If you believe that you have Meniere's, then best to follow all the recommendations for that.  There is no cure, but avoiding salt etc. is said to help.  Also, I was wondering whether switching back and forth from Valium to Xanax would keep either effective when used for long periods of time.  I take a really small dose - either half or even a quarter of a 5 mg. V when I feel my neck/shoulders tighten up.  I also notice when I do get that way, that the tinnitus becomes much more pronounced.  I was told I have stenosis at C 5-6 and disc protrusion at 4-5.  I believe that has a lot to do with many of my symptoms. I have had chiropractic treatment in the past - the gentle stretching type of manipulation on my neck that helped.  But as Patti said, it becomes too expensive to continue.  Very unfortunate!  Hope you're having a better day!

 

I take 2mg diazepam. They didn't want to up the dose saying the lower dose works best. Was never offered xanax. Way kids around here abuse that stuff I am not surprised. Hoping VNG tells them more info or my MRI on Tuesday.

Well, good luck with your appts.  I had a VNG done, and was told I didn't have vestibular disease.  Problem is, many of the symptoms point to just that.  I'm seeing a new Oto-neurologist in Oct.  For now, just coping!

When I told my GP I would prefer to be referred to a neuro otologist he wasn't sure what that was, but that's where i got referred.  This is the person who is specialist in balance problems related to vertigo.

Yes Anne,  Thats right. The hospital,i went to in London, next to Barnadoes in Queen .square,specialises,in all kinds of Neurological problems all the way up,to,paraplegics etc.  The dept i was seen i. was specifically called Neuro,Otology and deals,with all areas of the ear middle,ear,,vestibular system, balance problems, even eye related and is quite complex.

correction, not Barnado's,,Gt Ormond Street Hospital,for children.

DId you get a diagnosis Gillian?  Hope you're feeling improved.

Mot as such Anne. Tx for asking.  The only diag imgot at queens sq was 'chronic Diequilbrium'! Bit of a cop,out i feel as it was onvious they didnt really know.  On my last day at physio i had a different person and to be frank I felt she just wanted to get rid of me. Although it was there for the prescribed amount of time, a lot,of,it comprised,of me ticking on a form how I felt when i did this that or the other, 1-10, which really is hard to say,,it's too black and white.  She Tested me on things like walking in a straight line and turning around etc, and because I could,do that she felt i was in good shape!! I Tried pointing out ii am better when i am moving, it's when i am standing still, doing all the things we do without walking!!  Imfelt she was being quite,offhand and as i had already told her i exercise with Pilates methods (For my other problems,,Arthritis etc), had obtained a Wii board that may help (It didnt,,that was waste of money),she wote that into,her synopsis,saying 'continue with that' etc etc and bascally 'good bye',. So Top hospital! What can i say.  

I just continue with  my own ways of dealing with it, but nothing has changed!!

I meant...Disequilbrium sorry this page is running slow and delayed

Gillian to be honest, your just as well dealing with it as best you can cos' I think there is so much they don't know about this condition, so we're still in the dark.  My last appt with the consultant lasted all of 3 mins, cos he was running last and i was his last patient of the morning.  Physio  never bothered with me cos i was doing my own exercises at home and they thought i was doing alright on my own.  I had improved over the 2 years from when it first started when I could barely walk in a straight line the biggest help has been the tablets for MAV.  I still get regular bouts of BPPV but know eventually the crystals will dissolve on their own.  As I work I can't just take time off to go for an epley manouver, which would mean being referred again to ENT.  Keep looking after yourself, I think after enough time our brains adapt to a point where we can cope, although it doesn't feel like it at the time, I have improved over 3 years since this first started for me in sept 2013 about the same time as the menopause.