Back in 2002 I think, I began having problems. Balance was very bad, couldnt remember how to put a plug into a socket a couple of times, slurry speech now and again, blackouts in as much as I lost upwards of an hour just staring into nothingness, started putting words where they shouldnt be inplace of other words, very bad memory, got very deeply depressed. Went ot see my GP and he said it sounded like EOAD. He put me on Reminyl, 4mg, then after a month 8mg and after another three weeks 12mg twice per day. I used to be a heavy drinker, but have not, by the Grace of God, touched any alcohol in almost 8 years. I do smoke. The Reminyl helped a great deal, especially with balance and concentration and depression too. I got feeling so good that I began planning for life instead of death. I founded achildrens refuge here in India and I actually almost stopped the medication and was only taking one 12mg reminyl per day as a kind of a maintenance. Just about a year ago I began to feel very 'black' (thats how I describe it when it first began. My balance was again very impaired and memory shot again. Then in January I had a stroke and had a CT scan that showed it was a stroke. The scan also showed some brain damage - as a layman, it would be at the back of my brain looking down onto the scan with your eyes at the front - sorry, cant describe this too well can I. Since then I have been trying to find out whether the balance, depression, memory etc.. could have been caused by the brain damage and not actually be EOAD. The neurologists here, who make cell phone calls and talk with other patients while you are trying with all your heart to speak with them, dont seem to understand and tell me I have dementia. They say the brain damage could have come from a blackout - I never remember blacking out, even when I was a heavy drinker - or even from eating pork when I was younger (havent eaten pork in a couple of decades). If only I could find out whether this whole thing has come from the brain damage and is not eoad, I wonder if I could have different treatment? perhaps the reminyl has never been the right treatment - I dont know. I just know that sometimes I feel I am losing this battle and other times I feel ok. I have unreasonable outbursts of temper sometimes (which I have learned to control a lot) and am extremley impatient. My balance is not good these days, ut acceptable. I manage most things, but the frustration I feel at not being able to get a proper diagnosis is telling on me. I wonder if you can help me decide what to do next?

you need a doctor that you do trust. If there is someone close to you I would bring them to the appointment as well. If this is dementia then you need to plan for its progression, and how you wantto be helped. I would want an MRI and blood work, to rule out treatable causes such as normal pressure hydrocephalus, thyroid problems, b12 deficiency, and diabetes. if the doctor was talking about pork as a possible cause is he suggesting current cysts or parasites an a cause of brain damage/dysfunction: what treatments would he suggest. If there is no brain treatment for your poor balance physical therapy may help ; it helped my dad greatly.

Thanks for the reply. Are you a Care Consultant? Sorry for asking, but I guess you are as this is the place thread for them to answer - so thanks for answering.

Trouble with living in India is that the first thing the doctors/consultants see is a white woman and then the dollar signs start clicking up in their eyes...'how much more can I charge her as opposed to an Indian' believe me. THey then pretend to be interested and even over the top about your condition. Then call their friends on the phone and let other patients come in while your having an appointment. I've walked out of at least two appointments such as this.

No one single thing has ever been suggested beyond that pork could be to blame for the brain damage. It was I who told them I was on reminyl for eoad - it was accepted and addedto my notes. Never once hs anyone listened when I've tried to ask about the causes and stuff - whether the brain damage caused the sudden disabilities (they did come on very suddenly - perhaps over a period of three weeks which got worse towards the end of that time)

Working as a Charitable institution for the past few years here I have not been paid a salary of course - so I had wanted to try finding a doctor to figure out what was going on, as it is less costly than in the west. Also we dont wait for a scan, we walk in off the street and get one and have the answers in our hands within two hours - all xrays and reports are given to the patient to keep and the scan for example cost about 15 dollars, the EEG cost about 12 dollars, the appointment with the neurologist (again wealking in off the street) cost 8 dollars. If I were back in Ireland I would have to wait weeks if not months for an initial appointment again, and then weeks if not months for a CT scan, blood work, EEG or whatever. I had so wanted to get things sorted here before I went back to the west. But it doesnt look like I will be successful.

I am not a alz consultant, they will answer you within a day or two and will identify themselves as such. I am just the daughter of parents with dementia and am in a medically related field. It being a holiday weekend in the US I felt that you might welcome an opinion before the association could get back to you. Interesting to hear about the differences in medicine in other countries. Best of luck to you.

Sorry, I didnt mean to offend you - I've just been trying to get something sorted for a long time. Sometimes I read about eoad and I think, "well, I'm sure I dont have it!" and then when I read it can take as much as 20 years if you have eoad, then I think I may have. Sometimes I feel my time is running out as I am between a rock and a hard place...wanting to try and get something sorted before I leave here as it will cost so much in time and money once I am in the West again and then finding the doctors/consukltants dont really cre anyway here - they are a weird bunch thats for sure. I recently got sick and went for help. I was given a loads of meds. I asked whether they would conflict with anything I was taking for the strokes and mentioned the reminyl too. NO, was the answewr. Three days later I was in a very bad way because of a bad allergic reaction to one of the meds - paracetomol that also had something else in it. They kept asking what other drugs I was on and I kept saying..none! They then jsut said, well there's no more we can do. I left and spent two weeks in bed wondering if I would wake up the next day, I was really ill but afraid to take a ting for it. Eventually,m about three days ago, after almost three weeks, it seemed to have left my body. The medical profession on the whole here, from my experience is that they dont care and are lazy. I hope I am wrong and that some do care.

indigal-
My husband has had two strokes, and during the last one he exhibited the same symptoms as you did--dizziness, balance problems, concentration problems and some vision problems as well, but it took two weeks for them to diagnose it! (He doesn't have any type of dementia). I think you should see a good neurologist, so you can receive proper treatment for whatever your underlying cause may be. If you haven't already had an MRI using a contrast agent, you should have one. Just my opinion--I'm not a care consultant, but your symptoms sound so much like my husband's stroke symptoms.

Thanks for your reply. My symptoms began a few years ago - the strokes only happened this year.

Dear indigal,

Hello, and thank you for using the Alzheimer's Association Online Community. I will agree that there are times that doctors are not doctors, and the concept of bedside manners have gone out to pasture.

I will get to this last, however as you were explaining things, it did at first sound like EOAD, until you mentioned you prior drinking. There is a type of dementia associated with alcohol called Wernicke-Korsakoff syndrome, or alcoholic dementia. Treatment for this type of dementia results in Vitamin B-1. In mild cases, it is given orally, and in severe cases intravenously.

If it is a stroke, then it could be vascular dementia, which is brought on by a series of small strokes. Neurologists are the doctors that can give you treatment for this as well as Wernicke-Korsakoff syndrome if this is the type of dementia that you have. My advice would be to contact a good (stressing good) neurologist or geriatric doctor to better assist you in your condition. Inquire about the medication that you are taking specifically the side effects of Reminyl. Some side effects include dizziness, black outs, forgetfulness, and others. Ask the necessary questions and follow up with more if you are not satisfied. Should you have any questions please feel free to contact us at (800) 272-3900. We are available 24 hours a day, 7 days a week. Thank you for using the Online Community.

Sincerely,
Clifton, Care Consultant
Alzheimer's Association

Hello Clifton and thank you for replying to my post.

The drinking stopped literally all at once with Gods help, 8 years ago.

The eoad like symptoms began very suddenly about 2002. Reminyl since then - great improvement until last year,

then two strokes in Jan and March this year when I has ct scan which showed brain damage and the strokes.

Would brain damage that might have happened while I was drinking, but had absolutely no knowledge of, suddenly appear quickly after three years then without a single drop (2002)? Literally one day - suddenly and whoops I think it might be brain damage? I'm not being funny at all Clifton, but wouldnt that have made itself apparant before and kind of slowly? Instead of literally all at once? Could I treat myself with B1? Do you know of anyone who would know if I stopped the Reminyl (or Galamer as its caled here in India) and began B1 that I might actually improve? Oh dear, I am sorry, but you have given me hope! Though if there is hope with brain f]damage I dont know. Will it get worse. I dont drink at all, would it cause me to have more strokes, Oh dear, I am bombarding you. Please forgive me. This site is the place I have only got answers form in all this time instead of being rebuffed.

Hello Clifton again. As it was too late for me to go running around the Internet when I got your message last night (Indian time of course) I did so this mornng. I carefully looked at reliable nformation on vascular dementia and Wernicke-Korsakoff syndrome. I have never been one to hide away and tell lies when talking about the alcoholism I suffered from at one time, but when I read the information about Wernicke-Korsakoff syndrome, I could not marry up hardly any of the symptoms with that! The vascular dementia, however, looks more likely and I am now begining to think that when the symptoms began in 2002, that it may well have been the start of TIA's. These are said to be mainly unoticable - and to tell the truth, although it's possible that the first was NOT unoticable (with confusion, bad gait, poor balance & memory,word confusion, depression, and prolonged periods of daydreaming or whatever one would call it) the only noticable affects from the strokes in Jan and March this year were - bad balance, dropping things (like my hands were covered in soap and things just shot out of them) memory lapses - really I didn't (thank God) suffer anything worse. Having read up tis morning about Vascular Dementia and TIA's, I am sincerely begining to believe that this could be the problem. The problem is that when I first went to my GP about the initial symptoms in 2002, I was the one who suggested that perhaps it could be EOAD - perhaps (God rest him - he is now dead) he couldnt be bothered trying to find out either and thats the reason he simply agreed and put me on Reminyl? Leaving me to believe all this time that I have EOAD - until coming onto this website. When the strokes occurred, I found that they could be a side effect of EOAD - BUT there's too much else that doesnt seem to be following those guidelines.

When I read of how some of the symptoms can be "stepped" - I have to agree - as I can go for fairly long periods of time with no "progression" or even periods where I am relatively normal (ha ha) again. Then all of a sudden Boom! - but that was the stokes...therefore leading me to believe that I may have vascular dementia.

The problem is that if I go to a doctor and suggest any of these tings, apart from the strokes, they may well just accept MY findings and throw meds my way and send me on my way. I think if I ever do get to find a decent doctor n(neurologist) then I ought just to inform about the strokes so that HE can begin at square one.(though I would have to tell him about the reminyl - I guess I would say that the Doctor gave it as part of the treatment for memory lapses at the time - though a stroke was not considered in 2002 - my findings were just agreed with.

I will be 56 in November. I have a med for blood pressure (Losar-H) I have Ecosprin (blood tinner) I have Attovastatin 10mg for Cholesterol. I have the Reminyl (Galamer, in India) and I am only taking 4mg once a day at present. I take herbal tablets called Reosto (by Himalaya) for Osteoporosis. I was prescribed 0.25mg of a tranquilliser also after the strokes which I take at night(one only). I take 5 caps of fish oil about three times a day for rhumatoid and osteoarthritis, and living in India I take one Doxycycline capsule each day as anti-malaria medication, which I try to stop for a month every year. Thats it. There is nothing else that I take.

Hi guys,

im a bit worried with what i've been feeling from the past 3 months. I've been having serious headaches and memory lost. That i forgot names and small stuffs that i always do .Plus my concentration is lost.. I cannot focus on things even i try hard. And i always have this feeling thatgmy brain is not working. Sometimes i do stupid decisions because i was not aware of what i said.. help me guys .. Ima bit worried .. is this it? Are this signs? hope to hear from anyone.. you can email me at sheryllannjavier@yahoo.com .

thanks

Hello Sheryll,

I am sorry to hear about the symptoms you are experiencing. Based on what you described, I think it is important that you see a doctor. There are a number of things that could be causing your headaches, memory loss, and inability to concentrate.

You could start with your general doctor. If you need referrals to neurologists or if you would like to talk about this with one of our counselors, please call our 24-hour helpline at 1-800-272-3900.

Sincerely,

Hello again Clifton,

Sorry to bother you again, but I wonder when you have the time (sorry, I know you must be very busy) if you can possibly read my two posts above - and let me have your thoughts on them. Thank you so very much.

To indigal:

This is Clifton from the Alzheimer's Association. You are taking alot of medicines for your illness, and although each person is different, it could be along with the Reminyl, reactions that you are going through with the other medications that you are taking. I would strongly encourage you to find a good doctor or pharmacist to examine this. It can be either a neurologist or a geriatric doctor to examine you. Vitamin B-1 you can get almost anywhere from CVS to Walgreens. With respect to Wernicke Korsakoff syndrome, the severity of the illness determines whether it can be taken orally or intraveneously.

Thanks for using the Alzheimer's Association Online Community.

Sincerely,
Clifton, Care Consultant
Alzheimer's Association