Hi Hbep

I only just logged on and got your message re ME and candida. Very very interesting. I do believe this is fungal related, and my 5 days ago put me on Nystatin, I felt yucky for 2 days but now i'm feeling a bit better, ie the fog is lifting a bit and i'm able to cope better. I do believe mine is fungal rather than MAV as it started slowley and built up over a year, and especially when i was pregnant, I really don't think migraines operate like that they just come on not this slow start. Pregnancy is known to inflame candida. It also got worse when one of the many gp's i have seen put me on a course of antibiotics, also my yogi diet was mainly carbs and lots of them which i know is bad for candida. I have also felt like there is alot of gunk in my eustachian tubes. It all leads to candida, my gp thinks it started with a virus, stress etc then pregancy and the more stressed i became the worse it got as i didn't know what i have had for so long. i am still taking herbs and i do hope soon i will be better. i really really trust the guy in perth but needed the drugs to help. thanks for your info you really have had a rough time. how are you feeling now?? do you ever thing that your immune system has been lowered by ME and thats why you caught another virus?

let me know how you are getting on.

take care kippers xx

Hi Kippers,

Always great to hear from you. Glad the nystatin seems to be helping. And yes hormones play havoc with candida. I used to be desperate around period time and avoided antibiotics like the plague as candida loves those.

Do I think M.E lowered my immune system? Yes and no. I certainly wouldn't describe myself as fantastically healthy, lol, but If I 'm honest I think the biggest culprit for me is stress. I got M.E during a v. stressful period of my life and I got this just after some big stress. In between the M.E and the lab I had my first bout of tmjd - without question a clenching induced stress related condition. I think I learnt a lot of things from illness the first time round, but the one thing I didn't learn was how to go easy on myself, workwise, how not to drive myself to the point of ill health. If anything, once 'freed' from the ME, I chose to drive myself harder to make up for lost time. It has finally, finally taken dizziness to make me look long and hard at the stress in my life and to think about changing it. This is what I have spent the last 2 weeks doing.

I guess at the moment my health is very up and down, I had a good phase, then a very bad phase and now I'm somewhere in the middle. I think at the moment it is the psychological factors that are really hard. I do feel robbed of time, this was easier in my twenties, but for me anyway, harder in my thirties. I want to move on with my life, all be it in a different way from before, and I'm very upset that I can't yet. And if I'm honest, in my darkest moments, I'm worried that I might never be able to now, that this is how I will be. I suppose I'm also angry that this isn't the first time I've been ill, but equally humbled by the knowledge that some people are born in to a life time of ill health, or are much sicker than me. In many ways I am very healthy.

Sorry, Kippers, I'm rambling, strange isn't it, even just through communicating on a health board you can really feel you've got to know people. I intend to post my e mail address at some point, I am going to see whether it's possible to alter my info to include it. Hopefully one day we will all move on as we are fantastically healthy again, but I would hate to lose touch with the people I've got to know on here.

Keep in touch, Kippers, let me know how the nystatin goes. I've also been thinking of you with regard to the loss of your friend. I realise you may not want to talk about it on here, but grief, especially in the initial stages, is really tough, I so hope you're ok.

Also wanted to ask, are you thinking about trying the anti candida diet? Funnily enough, out of all the foods that used to make me ill, dried fruit was the absolute worst - to this day I can't eat a mince pie or a piece of fruit cake and I also can't drink carbonated sugary drinks. Other than that my diet has been back to normal for years.

best,

hbep.

[This message has been edited by hbep (edited 08-18-2003).]

Hi Hbep

Thanks for your speedy reply. I would love your email address if you post it??

I understand totally about not thinking you will ever be better, I've had many a day like that. I actually just got some info on panic and anxiety and it basically says that if you have a physiological symptom that really frightens you, you then associate that symptom whenever you are in the same situation again. For me, being alone or teaching yoga, as my first ear popping experience was teaching a relaxation during a yoga class (can you believe it) and I had to keep going as you can't just leave people hanging in the middle of a relaxation. So now I don't like being along so much and I don't like teaching. Anyway I'm going to work through this as the literature says no one has ever died from an anxiety attack!! thank god for something.

I have a theory about my sinus fungus infection. Before I got sick I used to do this practice where you pour water up one nostril and let it come out the other to clean out the sinuses (strange but true). When we went to Byron Bay I was run down and I probably kept doing this practice (can't remember), well if the water had been contaminated with spores or I didn't let the water drain out properly it might of started the infection??? Also last November before this got really bad, I did the same netti procedure and 1 hour later I felt awful, I suppose making my sinuses even wetter was not a good idea?? Re diet I'm not doing the anti Candida diet but the blood type diet, but I have cut out sugar and wheat and dairy (although the last 3 days I have strayed a little). I always feel better in the morning and worse in the evening, I feel ok now but yucky last night. I just believe what the guy in Perth said, and its strange that he didn't mention diet as I think he would of if he thought it was a consideration, but my GP here wants me to get my immune system working optimally and that means cutting out any foods that could cause and intolerance. I must admit when i eat sugar i have a lot more aches and pains through my body.

Enough on me, oh one last thing, re the friend who died, its a strange one because he is actually my ex who I lived with in London, so he isn't in my life but we had email contact. I wasn't in love with him at all anymore (thank god I here you say as I’m married with 2 kids) and when I left him I did my grieving then so I was more shocked then distressed about someone not being there for me on a day to day basis. Maybe I'm just blocking it out big time but I do feel ok about it now. hope that makes sense, and I don't sound to cold.

Have your ear sensitivies lessened (ie the loud noises etc) are you better equiped to deal with this, or are you still suffering from the anxiety? I'm interested in how this effects our confidence and how we try to cope with day to day life.

cheers and i hope you're enjoying the sunshine.
kippers

Hi Kippers,

Fraid this'll be a short one as I am having a v. rough morning of it dizzy wise.

About your ex, no it doesn't sound cold at all, in fact I was pretty blown away when I read that as my friend who died was also my ex!!! Not a common experience I'd imagine amongst women of our age. And I totally understand what you mean about grieving them the first time around.

Woke up today and had my first ever bout of frantic visual spinning - just awful - still feeling ropey. I think I did a very stupid thing for a couple of days, which was doing some VRT which involved rapidly rolling from side to side. I stopped that but have felt worse since and think I might even have 'helped' myself develop BPPV. (Benign positional vertigo.) Not sure, I am so desperate about it I might phone the specialist today, see if this is possible, it seems to come on very badly when I lie on one side, and get better/nearly stop when I sit up. Sorry for rambling about this but am so upset at developing yet another new symptom at a year in. Yesterday was my years anniversary (I won't be getting out the champagne to celebrate.)

I know I've mentioned this before but the best book I've come across about anxiety is 'Hope and Help for your nerves' by Claire Weekes. (It might be Clare without an I) She talks about sensitisation to certain places, and how people start to avoid them etc... I am no longer getting the vibration in the ear in any major way, thank God. I hope I've seen the last of that, and it certainly helped me to get the anxiety under control - although not completely - I fail to see how anyone could be anxiety free with all this horror going on. I'd be so much happier if I stopped getting new symptoms.

Anyway, have to go, feeling really queasy. Just to say I am an excellent example of how it is possible to get rid of candida. I had it really, really badly, and I managed to kick it.

Anyway, I'll write again when I'm less unbelievably nauseous.

Hope you're doing ok today,

best,

hbep.

Sorry to but in folks, but just read your last post Hbep, it sounds awful!

Do ring the hospital, I'm sure they'll see you again if you've taken such a turn for the worst. If it is BPPV take hope from the "Epley Manouvre" post.

Hope you get back to "normal" soon xx

Hi there Kippers and Dizzyblonde,

Just thought I'd check back in after last v. despondent post. I am feeling better now, v. lightheaded, but the spinning on lying down has stopped. I did phone the hospital, as I suspected the consultants were seeing patients. They said I should phone back. I did call back, but just spoke to Dr Davies secretary and said I would phone in a few days if this continued and talk to someone then. I embarrass easily and don't want to bother them unless I have to. I'm guessing if it was BPPV I would still be spinning every time I lay on my side, and I'm not, so presumably it's just more of the same old rubbish. I'll have to see how things develop.

This is just so disheartening after having felt better. Was out at the cinema last night, was driven home by a friend and for the first time ever felt spinny in the car. I normally like being in the car. Just don't get it.

Sorry, this is all very self obsessed, I know you're both feeling bad too. I honestly thought I'd seen the worst of it and was on the road to recovery - this has really thrown me.

take care,

hbep.

[This message has been edited by hbep (edited 08-20-2003).]

[This message has been edited by hbep (edited 08-20-2003).]

Hbep please don't apolgise about feeling ghastly. i wish i could say something to help you. i don't think i would be coping if i spun like that, can you take a valium or something to help???, If I was you I'd go to the hospital demand help, "WHAT CENTURY IS THIS, WHEN WE CAN BLOW THINGS UP WITH PRECISION, REPLACE HEARTS, FLY TO THE MOON, BUT NO-ONE KNOWS A BLOODY THING ABOUT INNER EARS" ahhhhh. sorry a little rant. I just feel so frustrated for you, at least i have one medical person who listens to me now after 100's who haven't.

i'm actually not feeling so bad so please don't feel bad for me, its just the fog really and i'm starting to wonder if i actually even have an inner ear disorder at all (unless the fungus is in there as well??) anyway when you are feeling better let us know what happens.

Oh yes i have spoken to my doctor about anxiety and she has given me some reading to do, which is very similar to what dr weekes says. very interesting but i agree its hard not to feel anxious when you're head is in another planet and everything is dancing around. but on the otherhand, if my immune system needs to kick in to get rid of infection the less stressed i am the better.

sending you get better no dizzy vibes from Oz.

cheers kippers

Hbep:
Read your distressing post about you thinking you may have BPPV. They show on some sites how they do the epley maneuver. Couldn't you have a friend help you with doing this manuever so you don't have to wait to see a Dr. It certainly isn't going to hurt you and it could quite possibly give you immense relief if this may be the case. They performed it on me and my husband said he could have done the same thing the Dr. did. Unfortunately, I didn't have bppv. Glad to hear the next day was a bit better for you. I know how you scare yourself into thinking it could be something else. I've done it many times.... Take care hbep.

all the best,
Kathy

Hi Hbep, just wanted to voice a bit of consolidarity about the car thing. I haven't dared drive since all this started but I was fine initially as a passenger. About six weeks ago however we drove up the M1 (faster than normal as we were late) and it was quite busy - cars overtaking/changing lanes and it really threw me, fely ghastly all day!!

On normal roads I'm not normally too bad, changes in motion affect me sometimes like when we stop at traffic lights I sometimes still feel as though I'm moving really quickly. The other time it affects me is at busy fast T junctions where we have to wait for a while, just watching the cars whizzing past in opposite directions makes me http://www.healthboards.com/ubb/dizzy.gif .

Anyway, take it as it comes, I still travel by car and sometimes it doesn't affect me, xx

Hello Kippers, all,

Thank you for all your replies. I am feeling much better today. Having woken up yesterday to a bout of spins, today is by no means perfect but calmer. I cut out doing the rolling vigorously side to side exercise 2 days ago now, and for the moment my theory is that's what did it - too much VRT too soon. I'm back to doing the gentler exercises and needless to say won't be pulling off any kamikazee VRT stunts in the near future. The morning of the bad spin I had also been sleeping in a weird position and my neck and jaw were more out of whack than usual - tight etc... Guess that may also have played a part. Who knows. Anyway, I'm not getting over excited - this has been a rough 2 weeks, guess I just have to take it a day at a time.

By the way Scant, I read a fascinating statistic from a VRT therapist today - she said the average number of doctors that a dizzy person sees is 11. I'm presuming this means that many people come across doctors not qualified to tell them what's wrong in the first instance, before finding the correct specialist. I'm not suggesting you'll have to see 11, lol. I'm guessing many of those people might not have access to the internet, which obviously can speed up the process of finding the right specialist. Hey - I've just realised, yesterday was Wednesday which means you saw your family doc. Did you get your referral to the Syracuse doc?

Kippers,

Here's hoping you definitely don't have an inner ear disorder and that the candida therapy is the answer. If my memory serves me correctly, you've been dizzy about a yr and a half? Is that right. You sure deserve a break. It sounds like you're getting better although it may not feel that way sometimes. As I remember it, you were initially dizzy as well as foggy, if you have managed to kick the dizzy and are left with the foggy, it sounds like you're on the path to recovery. Here's hoping that's very soon.

Dizzyblonde, thanks for the driving info, it's good to know other people get weird new stuff going on later on in their illness. It's always comforting to know it isn't unusual.

take care all,

hbep.

Hi Hbep

Re the candida fungal diagnosis, i'm still not better so i have to wonder what is going on. I am still convinced by this man in perth and rang and spoke to the receptionist there last week. she reassured me that he has had great success with many people who were not cured by mainstream. she told me that he was taught by his father and spent time in the mountains of Chile with the Indians. She said if he told you three months then you have to do what he said religiously and wait the three months. I'm too impatient.

how are you going? I don't have time to read other posts so i'm sorry if you are doubling up.

all the best kippers

[This message has been edited by kippers (edited 08-28-2003).]

Hbep...Read your post where you said you dont think it could be BPPV because when you lay on your side, you dont get dizzy...Dont rule it out just yet...As you know, I was diagnosed with BPPV, had the Epley manuever done, and am still 99% dizzy free (still have occasional vertigo, but nothing major) I never got dizzy laying on my side at all..As a matter of fact, laying in any position made me feel better...I was at my dizziest when I was sitting or standing still, or looking at shelves in stores, sitting at my comuter, ect....Hope this helps you, as I still consider you the one who helped me the most seek a second opinion and I am so grateful to you....Take care ...Mary

go to the top please

Hey Kippers,

Thanks so much, just saw your message, I will be in touch.

Sounds like you probably do need to hang in there with the treatment, give it a bit of time. If it is candida, it can definitely take a while to shift.

I'm having a bit of a dizzy day but am better than I was, tired of this whole dizzy rubbish, just want it to go away,

take care,

hbep.

Hi there Noody,

Thanks so much for the info - I often think of you as I remember you saying you got most dizzy sitting still, and at one time you were thinking of practicing sitting still as VRT rather than moving. This is fairly true of me. I do feel out of it when walking around, but it's sitting down or in my case lying down (just not on any specific side) that seems to really bring it on. Hmmmm. I'm in a phase of thinking about my diagnosis, double checking. I will definitely be bearing all this in mind when I go and see the specialists.

No need to be grateful to me Noody, sounds like it's the good ENT you saw who deserves all the praise. To be honest it makes me so happy every time I hear from you, you really went through the mill with this dizzy nonsense, so brilliant that you're 99%.

take care,

hbep.

I am very grateful to the doctor who finally diagnosed me, but you Hbep were the one who told me not to give up and to keep searching for answers until someone answered my questions...For that, I am very grateful to you...I live in a very small community and my options were so limited in seeking help, so without your encouragement, I probably wouldve just accepted what my first ENT told me, "It will go away"...For 10 months, I beleived that and maybe in time, it might have gone away...But because of being persistant, and seeking those answers, I feel almost myself again and have had a wonderful summer....I work in a senior housing unit and this dear old lady who lives there has been having a really tough time this week with the dizzies..She is in her 80's and she literally has been in bed this week, all because she went to the dentist, and the dentist insisted on tipping her back to work on her teeth...She had told the dentist that whenever she tips her head back like that, she gets dizzy...I guess shes had this problem for awhile, but its been gradually getting worse...She said she cant get her hair washed at the beauty shop because laying her head in the washing bowl makes her spin...When I was talking to her, she had me stand directly in front of her because looking to the side made her dizzy...Wow! I saw myself in her, because that was exactly how I felt in my early stages of BPPV....She told me she had a doctors appointment today, so I went to one of the computers at work, and brought up a website that SUBS had recommended on BPPV, Printed it and highlighted all her symptoms, and gave it to her to take to the doctors...I also gave her the name of the ENT who had helped me and told her to insist that her doctor refer her to my specialist...(Thanks you, SUBS...I think all your knowledge of the different websites my have just helped a sweet little old lady) Just another reason why this website is so wonderful! I'll keep you posted on her progress....Sorry I just got so long-winded but I just had to share that story ...Even though I dont post here very often anymore, I still read the posts every day, and if I see a post that I think maybe my experience might help, then I throw in my 2-cents....I just wish your journey to recovery was smoother for you, Hbep as you have certainly helped so many of us fellow dizzies....Heres hoping you find all your answers real soon.......Mary

Hey there Noody,

Thanks for your very sweet message. Also very pleased to hear about the old lady you have helped, how lucky that she has you caring for her. Let's hope your ENT helps her as well. It must be so great to be back at work without feeling dizzy, and also to have had a great dizzy free summer. One up side of the dizzies is you must have an extra good time when they finally go as you appreciate it all the more.

I am not too bad at the moment, after the horrible set back I stopped doing the over vigorous VRT and things settled down again. I currently seem to have leveled out at a sort of manageable level of dizziness, definitely much better than at the beginning of all this, so I try to remain optimistic that I will continue to improve. My gut feeling is it will take quite a while for me but I hope I will get there.

It's great that you keep posting, Noody, even though you're 99%, I think people really need to hear from those who have put the dizzies behind them, how they did that and to benefit from their experience. Also, even if that wasn't the case, we'd miss you,

take care,

hbep.

Hi Gang,
I haven't been on in an awfully long time, and was happy and sad to see all the posts. I still have ear pain, I have given up on seeing doctors. Fog largely lifted, comes back to visit now and then. I think Red wine, while I am hearing it will make me live longer, seems to make the ear illness flame up. I did want to mention that when I was on my fungus kick, I too got some nystatin, and ran that, and when I could feel no result, managed to get some diflucan, another more powerfuld anti fungal, but it didn't make me feel any better either. They have even more powerful anti fungal drugs, but they must be closely monitered. I have been back to my grated horseradish, till my entire head is on fire, it seems to help, but who knows, maybe I'm just kidding myself. ( no I really do think it helps) I'm back to a viral theory, and I just wonder, is anyone (doctors) even looking? Has anyone ever read any ear journals or whatever? Just wondering. I hear viruses are hard to find to begin with, being so small, and you can't go into the ear to get a swab or whatever anyway. All I know is this: I didn't just wake up one day and have my ears go haywire for no reason whatsoever. But I'll make lemonade if I can.

Hi MSG,

Good to hear from you (well, only in as much as it's nice to see an old face - shame you're still suffering with this malarkey). Fraid I don't have any definitive answers on the fog/viruses. For the most part my fog has massively lifted - with me it was down to a particularly horrible tmj/labyrinthitis combo. Many other problems remain - but as you were there at the beginning of my soup terrine days, you'll know how delighted I am to mostly see the back of it. It still pays the odd call now and again.

Oh yeah, I did have one thought - ages and ages ago, you mentioned rolfing (is that what is was called?) just before this started - I have absolutely no idea what that is, other than it's probably a strenuous physical activity? Anyway - one of the things I know for a fact causes a foggy head is neck problems, and also, as you know tmj, but I know you've discounted that. I see a physio for my tmjd and she said her neck or jaw sufferers are all big foggy headers. Could you have strained the muscles in your neck rolfing, whatever rolfing is, if it's even called that lol? Just a thought.

To be honest, I always liked your turning in to one of the X Men theory. I'm still holding out for advances in modern science, I want bionic ears or a total head transplant. Ideally, if they master the latter, I can also look like Cindy Crawford.

take care MSG and keep in touch,

hbep.

hbep,
You must be an old soul. To be as sick as you say, and still log on to reply to my whining posts. Ah the soup Tureen. Actually I did read some news about Alzhiemers disease. It was long thought that so called 'brain plaques' were involved in the memory loss. Recently a compound(s) known as addl's were implicated to interference in the synapses and prevent memory formation/recall. It just sounded so much like the fog in the article I read. Once the small molecules are removed, fuction returns. (good news!! its not permanent!!) I really do love science, esp when it works. Not to toot my own horn, but for years my wife insisted I have a natural talent for massage. (before she dumped me) Finally, at her urging, I signed up for an introductory course which was alot about anatomy etc. in Rolfing. Ida Rolf was this amazing person, who, trained as a chemist, developed an approach to bodywork which has become otherwise known as 'deep tissue massage'. The idea is that after an injury, the body very quickly mobilizes connective tissue (collagen) to repair the damage. These sticky tissues cause postural changes because as she says, 'we are moving in a field of gravity'. Ida Rolf had a sick son she was looking after. So in rolfing, one uses ones elbows etc, to break loose the bonds caused by this collagen, which will free up movement. It can be painful, but when you float out of the office, it seems worthwhile. I just have a problem to work a an unclothed stranger (U.S. Land Of Lawyers) It was at this time i first became sick, so really who knows. It can be very powerful work, and can call up old memories, and why that happens I have no idea. Alernative healers sometimes, if they are smart and good, can have therapies that far surpass standard medical practice. If they had a cure however, bet we would have heard of it. Hbep, do you know what the thinking is of the inner ear specialists? What are their theory's? I am trying to find a way to go back to school for this stuff, because I am in it for the long run. You may not know this, but zoologists do not consider viruses to be 'alive'. They're like little crystalline molecules determined to replicate themselves through time.