I want to know how many of us REALLY have the shakes.

Thank you, Broadsword, for your response.  When I wrote I didn't really even think of BX per se, but rather just the tremors fm inhalers but I'm always aware of other possibilities.  My father had a brain tumor inoperable many many yrs ago and he had stomach ca, colon ca prior to that and it had metastisized.  I suppose my researching has been as a result of things my parents had.  Then my mother had aplastic anemia and for a long time before that peripheral neuropathy and so I half keep my eyes and ears open and so far I'm lucky I only have lung problems.  When I read your post the other day I thought in a way how fortunate we all were as we didn't have a brain tumor...It's funny, you know, doctors just don't react right when we tell them what's bothering us.  Another lady mentioned that in her post.  The specialists only seem to care about their specialty and leave it up to us to figure out where else to go.  I think chiropractors may be different as I've had referrals from them.  So the suggestion that inhalers can cause trembling was the best I got and no referral.  I guess I'll have to resort to finding a proper primary doctor who hopefully will be able to confirm it's just inhalers. But still I'd like a therapy to stop it somehow.

I can see how your meds for your tumor would upset your entire applecart in more ways than one and the effects of the new drugs on your immune system.  Do they allow you to take supplements or something to build your immune system if you want or do they give you something for that purpose? Can your tumor be operated on after they try to shrink it with the steroids?  I'm assuming that's what the steroids are for.  I wish you well as we all do ------

I want to thank you for writing; I will take your advice and go to a new primary dr. close to where I live who has been referred to me by several people.  He's a GP but a good place to start.

Tabatha

Thanks Tabstha for your insight. You are wise to seek out a GP who looks afresh at your symptoms beyond the meds for Bx.

The tumour came as unexpected stroke symptoms although I had not felt wonderful beforehand and had lost weight, in my case thought helpful. I had 5 hours of neuro- surgery to resect 95% of the tumour and start chemo and radiotherapy today in Brighton. I have an evens chance of being here in 16 months, as the grade 4 is not wonderful . That aside, because this is the wrong forum, it demonstrates the compound effect of any co-morbidities on Bx. We may have Bx at any age but as we get older we get other conditions and that adds complexities which we and single speciality practitioners may struggle to understand. I have a medical background and have had to triangulate between my Oncologist, now leading, my GP, a friendly pharmacist and various other technical specialists and read a lot too. All the wisdom had not come from a single source and as patients we have to be empowered to ask each professional appropriate questions. After recovery from the surgery some 6 weeks ago, managing the chest has been the challenge to occupy me. My initial GP consultation wanted to add prednisolone to the stronger steroid for the brain. The wrong answer said everyone else when I asked questions. For me, Az was almost a cure for the Bx, recommended first by the consultant at the Brompton who wrote the British Thoracic Society guidelines. Worth a read if you have not discovered them. No inhalers or other antibiotics touched it and the constant cough was always a marker to find me. I have discovered health care professionals who do not understand that what is considered a third line antibiotic has a unique anti-inflammatory effect different to but as powerful as steroids and unlike others in the same class like clarithromycin, which does not exert the same effect. I am not sure that the reasons for this are understood and for everyone it will be different but I do owe management of Bx to the power of Az. I now have to look for a magic solution for a Glioma! No-one mentions alternatives but there is new mention of that old stand by, aspirin, having an effect on cancer. Luck, guesswork, good or bad science who knows. I am also told black currants are good but there are so many claims for superfoods and I like some evidence to back up any claims.

WOW! What a msg. I've re-read it to grasp all of it.  First I have to say (off topic of course) my father lived in Worthing and he used to sing a song to us as children something about  'seawood in Brighton by the sea'.  I can still hear the tune now.

OK, back on track.  At least the managing of your BX will keep your mind partially off other things. And I have to tell you that my father did not die from his brain tumor.  He died of something else even tho his was not curable.  I don't know if that's the good news or the bad.  ha ha

NOW I AM impressed with what you say about Azithromycin.  Never in all my days have I had it explained like that.  And doctors should tell us 'this particular antiobiotic has a steroid like effect etc etc'  or this one fights the bacteria ' so that we don't bundle them all in the same basket.

But I suppose they just assume we'll read all about it on the leaflet and be able to understand it if we took the time to go thru the entire thing. Or they might think that we don't need to know because they know.

I'm assuming, Broadsword, that you have an active infection when you take that antibiotic or do you take it regardless as sort of prevention? 

Re the black current idea - many years ago I had a friend who said that cherries were the panacea for arthritis pain.. She'd heard a story of a doctor who had terrible arthritis and he couldn't sleep and went downstairs to the refrigerator and saw a bowl of cherries and he ended up eating the entire bowl.  The next day his awful pain had gone and from then on he ate cherries every day.  My friend who told me this ate cherries consistently) for the same reason and I don't know if her pain had gone as I never got a chance to ask her because within a year she had died. She died of lung cancer.  Cherries are certainly full of antioxidants so obviously no help from cherries.  Following Ida's research it might have been that she already had the cancer cells in her and the antioxidants just made them grow.   There might be good and bad in that story too : )

I know what you mean about needing evidence to back up the claims. We'd all like more of that I'm sure.

As you've been in the medical field you will have many stories of things that people have tried and failed so I won't give you any more.  As you said as we get older many things happen to us and to our friends and we've heard their stories of what didn't work for them - it's possible we don't hear about the things that do work.

Again, I'll wish you well and keep watching for your posts.  

Tabatha

 

Hello, Broadsword -

I am just wondering how you are doing today.  How have your chemo and radiation treatments been?  Are you still having them and were you able to even think about your BX under those conditions?

Let us know how you are.

Tabatha

Dear Tabatha

my radiotherapy treatment ended a few months ago and the chemo ended early December. The latter is a relief because of the adverse side effects. The treatments have worked as I had a clear scan result somImam currently amongst the survivors whereas the majority will not have been. The BX has not troubled me maybe all the other meds in some way had an effect. I have been careful about infection and have forced that on visitors. My daughter recently had a heavy cold and she stayed away whereas she would normally visit each day. By a thorough routine, intended to keep me out of hospital for sepsis, a side effect of the chemo, it has also ensured I have had no colds/chest infections all year and thus not rousing the slumbering giant of BX

Regards

Brian

Wow!  What great news that is.  And I think that last sentence must be accurate because BX does seem to be a giant of a problem for some yet others don't quite feel it as severely so 'slumbering' seems to fit. 

Well, Brian, that's good news to hear and obviously you had the right doctors and the right treatments.

Tabatha

Hi, Julia, 

I want you to know that I agree with you totally about chemicals in the body.  I do not like drugs at all and have done everything I know to avoid them. I'm about your age and I was going thru menopause when all hell broke out and I was dxd with severe osteoporosis, hypothyroidism and what the dr. dxd as asthma all at one time and I was put on all the drugs for all of that. (that started me on the road to keeping very accurate records and doing a lot of research.  I finally got off the osteop. drugs, still take the thyroid and it's been increased a bit and continue of course with inhalers so I can breathe and I now see an allergy dr. who is exploring the idea that I don't have COPD (because I quit smoking at 35) but just allergies so bad it causes asthma.  But the jury is still out.

Nevertheless if I don't take the inhalers I might be good for a day but by the 2nd day my chest is tightening up and I wheeze a bit and have coughing all day and mucous struggling to come up.  the drugs stop all that.  (I have not much idea of what the Bx really does to me as I've been assuming all the mucous was from the asthma &/or COPD) If someone were to tell me something else to try instead of the corticosteroid inhaler which reduces inflammation, I'd be excited and would attempt to try it.  I have changed brands of drugs and have tried Theophylline for a month but wasn't sure what to expect and didn't note a change and there are still side effects anyway. And yes, all 3 of my Pulmonary specialists over the years have enforced the inhalers for me.

Julia, are you not doing any inhalers?  Do u only have Bx? If you have more than that how do u get by without inhalers.  And are you saying the your drs years ago wanted u on inhalers for BX????

I have had asthma about 22 yrs and COPD for maybe 10 yrs and BX for I don't know but told about it in last 8 yrs or so.  I don't know what it feels like personally to have JUST  BX -  

I do the inhalers, but never antibiotics for quite a few years, and didn't nebulize for years but have started again now due to exacerbation of  something (COPD?? or Bx??) a year ago and my PFT shows my lungs have worsened. I'm now at 53% lung function which to me is disastrous because before that bout of pneumonia I was at 68%!! I was proud I was holding my own at that rate.

I do Albuterol to open the airway for the asthma, Spiriva which does the same thing (there is a combination called DuoNeb, and Spiriva is the 2nd part of that combination, along with Albuterol)  and also the Symbicort for COPD. 

I know a few people who say they have asthma but don't take inhalers unless they have an episode.  What is that?  I have mild asthma but very occasionally get so out of breath I can't talk or can't walk for a few seconds until I can get my breath.  (A heart doctor may be next on my list)  I'd thought if I could eliminate one inhaler or get to a lower dosage, it would be better, but I don't do nearly as well when trying that.  And now I'm on Singular which is a pill (oh and I just remembered I missed it already and I'll be taking it late, like now).

I think this trembling IS drug related but I'm going to do more to find out.  PS my allergy dr just asked me if I wanted oxygen just to sleep.  I hadn't thought of it and not going to even tho he said 'it's good, it won't hurt.'  I don't feel THAT bad.  If I don't exert I can breathe just fine!!!!  Ha ha.

Hey, Julia, I bet you didn't expect a nice long answer, did you?  It's good to talk with you and I thank you for answering me and I'll let you know how my investigation goes.

Let me know more of your situation if you will, because I really would like to know what you or anyone with similar issues does as far as therapies go - if someone has a good way to breathe without the inhalers that we're led to believe are really necessary.

Golly, I go on and on ------------- etc.

(not antibiotics as we're not talking infection).

Thanks, Steve.

And yes, I do read the leaflets when I get them the first time anyway, altho we do tend to forget what we read after a bit.

I know the drugs can cause this trembling and it might be more than one that I take, but I thought I'd ask because nobody I know gets that problem so it just might be I happen to be one of the lucky ones the leaflet refers to.

AND wouldn't it be interesting if someone responded with a YES and I could then find out what issues they had with it and what they did about it - like a separate little support group : ) Like how do you hold your cup so it won't spill, do u tremble at certain times of day or just if you're nervous or after you've exercised or just after inhaling etc.   Very interesting topic but so far nobody has the problem but the day is still early!!

Tabatha

 

You haven't been on Symbicort as long as I have so it may make a difference.  Hope you don't get it.

I do read the inserts and do know the asthma inhalers can cause it.  But that's a big word - can.  I don't wish this on anyone but it would be good to know that it DOES happen to others.    That doesn't sound so good, does it.    I'm off to that new GP in the very near future to find out more!

Thanks, Steve.

Oh, this is interesting --no, neither hand shakes at rest.

Have no clue about alcohol because I normally don't.  I do drink an occasional glass of wine and I usually am at the computer when I do but don't think I've noticed any difference. I will make a concerted effort though to check.   I did come into some moonshine last week on our vacation and that might be a good test!!

Stress can affect it.  If I try to do something on the computer with my husband watching my hand will go crazy, likewise with the eyeliner (can u imagine?) and mascara and I'm always under stress then because it means we're going out and maybe in a hurry or something.

When I eat it's hard to get the fork to the mouth sometimes.  Not normally.  But if I try to balance peas on a fork or even green beans, it doesn't work.  It's OK until it gets to the mouth so it's doing precise movements that bring it on.

Yes, I've seen older people with head shaking that's why I think I'm old.  I joke about it  I even joke about coughing up sputum because I've tried crying and that doesn't go over so well.

What meds did you try to take that u had to stop?

I must try and drink more and EVALUATE!!   It'll just be a test, don't worry.

That brain implant you have, does the wire run down from the brain down your neck to your chest?  Do u feel it? I'm surprised when you do your chest clearance and deep coughing that that is not affected somehow..

How did the doctor test you for this to find out what kind of tremor you had or do they just know from asking questions?   Was it a GP you went to?

Thanks, Elizabeth, look forward to hearing from you.

Tabatha

 

Tabatha,

I would have trouble eating as well.  I never had soup in public, and you are right about having food on the fork and getting it into the mouth. I never carried a cup on a saucer (it would rattle).  At a buffet, I would hold the edge of my plate with my dominant hand to my waist and serve myself with my non dominant hand. You do a lot of 'tricks' to get by. And even so, people would ask me ' why are you so nervous?'

The procedure, I now have a lump on the top side of my head where the end of the electrode comes out, the wire goes down the side of my head to the chest.  I don't feel the wire and for the most part don't even think about it.  I use a percussion vest  and it doesn't hurt it at all. They do have to be carefull when I have a mammagram. I'm small breasted and kinda boney, so the battery pack is just beaneth the skin, just above the breast.

Another good thing, I had to have my head shaved, and as it started to grow out, about an inch long, I started getting compliments on my new hair style. So I have kept it short, so much easier to take care of.

I was referred to a Neurologist by my gp for the diagniose. I tried several different meds (gabipenten and primidone). And had done the max on several meds and still had the tremor. Because I'm on other meds, I couldn't take beta brockers.  After a few years the specialist suggested the procedure.  I kept saying no until finally, at work, I was trying to write something and I couldn't hardly read it.  I called his office and said "I'm ready to do it".

I was told that going thru security screening at airports would shut it off or they would question it (I have a card that I carry stating what the device is). But we have done a lot of traveling even international, and I've not had a problem.

Hope I have answered your questions, Beth

Beth - thank you!

I just checked out a good website and got a description of the procedure.

So a Neurologist is who I'd need.  Well that suits me fine - that's one specialist I don't have.

I KNOW I'm not very bad yet. I haven't reached that point of desperation even though my time seems to be almost doubled for each job I do.  You mention writing - I can't write because of arthritis in my index finger and thumb and the tremors make it doubly worse.  My husband has to write anything that needs to be done or I can otherwise scribble in very large print.  Printing works easier than cursive.

I'm going to keep tabs on when it's worse than other times.  Also I recall at night time, when everyone else is sleeping and I'm doing captions on my photos and numbering them that I'm able to do that with only one hand, fairly steadily but my brain feels frustrated doing that.  And it's a very tedious painstaking job.  I've done that several different occasions.  My worst time seems to be during the day and another time is when I'm using the mouse to follow along words I've typed and the cursor jumps all over the place back and forth and up and down.  I've even wondered if the mouse pad that has a big hump on it for my wrist has something to do with it when I'm working on the computer.  So I try different ways to work this mouse pad.

OK, I think you've given me all I need and I thank you very much, Beth.

Tabatha