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Wow! People Like Me/Life With Recurrent Dizziness

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Old 07-25-2009, 08:38 PM   #1
Join Date: Jul 2009
Location: Sydney, Australia
Posts: 1
dizzydame7 HB User
Wow! People Like Me/Life With Recurrent Dizziness

Hi All and how great it is to find a site like this on the net.
Discovered this last week and have been reading ever since to see if it could help me get to the bottom of my problems. I'll try not to bore you all too this has been ongoing for me for over twenty five years. I'm forty six now and this began at about age eighteen. Intermittent dizziness lasting 24/7 well accept for when asleep, lasting for weeks at a time was first diagnosed as migraine. At eighteen treated with tabs for migraine, then another neurologist had me on deucene tabs (which were a form of valium)so whether they were to help the dizziness or whether he thought the problem was all in my head...who knows!!!
Flu or virus seems to be one of my main triggers to set this dizziness off, though I have had it after plane flights,houseboat trips,wisdom teeth removal,too much alcohol(yes, I know, what an idiot to risk it) whiplash after a minor car accident,food poisoning, having a really late night and even basic stress at home eg. from an argument with hubby or stressing over work issues. Once I've got it, it lasts from one week to my longest bout being twelve weeks. To all the veterans out there, this probably does not sound very long but I am so off the planet when I have it that I am off work and it is so debilitating, just doing the simplest tasks around the house and with a you all know!

I have seen ENT'S and had all the auditory,oculography and nystagmography testing done. Even though these did not show anything significant, in 1991 I had a right tympanotomy(looking for a leak 'fistula' in the inner ear)but there was not one present. At that stage another neurosurgeon suggested cutting the vestibular nerve to the brain. I was told if it was successful, that I would be spinning out dizzy for about six weeks then the body would find it's own balance and if not sucessful could be dizzy for life. At this point I chose the tympanotomy only as mentioned.
Around the same time had postiography testing resorted to lots of natural medicine like homeopathy, seen an iridologist, had cranial sacral releasing. Every bout I get I am grabbing at straws and trying everything to find help.

In early 2000 when I had my longest episode to date of 12 weeks was sent to two different specialists at RPA in Sydney. Prof Turtle-Head of Endocrinology and Prof Halmagyi-Head of the Hearing and Balance Clinic. I note here, that this is how I came to find this site now ..googling Prof Halmagyi, and have been really interested in all I have found..especially the lecture 'SCOTT' got to sit in on. Well to continue, Prof Turtle began me on Florinef 1mg,potassium, told to wear support stockings and drink lots of water. His diagnosis was Autonomic Nerve Dysfunction. With this the BP lowers on standing, causing the dizziness. I suffer with low blood pressure and the idea of this is to help raise the BP by retaining salt in the kidneys. The florinef was upped to 2mg and I was on it for over six mths...not sure if any of this helped.
During this time was also seeing the balance clinic who diagnosed me as probably having periferal vertigo. I was also doing the exercises as for BPPV. I was put on Prothiaden 25mg which Dr Halmagyi said was not a problem with the florinef. He though, did not agree with the Automomic Dysfunction(also known as postural hypotension or NMH-neurally mediated hypotension)diagnosis. He felt my dizzy symptoms were also migraine related, thus the prothiaden. I had then gotten the odd migraine, mostly the aura and not being able to see for 10 mins or so,but didn't really suffer too much with headaches but he still felt it to be significant. On another bout in the later part of the year he performed a tilt table test but the results did not really help clarify the problem. Eventually all subsided and I was really none the wiser to the true definition of what I suffer with.
Even though the tilt table test did not show a dramatic drop in blood pressure the endocrinologist still felt it was the NMH.

Seeing a TMJ the same year, I was referred to a doctor at John Hunter Hosp in Newcastle with whom I spoke at length on the phone. He felt the NMH was the problem and sent me about 20 pages of notes on the topic with the recommendation of a high salt diet. I found a local endocrinologist who monitored me on the diet as I did not find the origional endocrinologist approachable and he would not explain anything to me. I wanted the salt diet monitored as I also suffer with polycystic liver and kidney and I did not want to cause any damage.I also add here the polycystic disease in relatively minor and does not bother me at all,I only discovered it in pregnancy ultrasounds, runs on my mum's side and I don't think has any relevance to my dizziness. The polycystic disease for which I do see renal doctors can cause aneurysm's so I have also had an MRI showing also an all clear result.

Each subsequent attack I have had in the last few years, luckily have been much more spaced out (maybe one a year and a couple of years none- thought I was outgrowing it)and have not lasted as long, except this time. I have resorted mostly to the high salt diet but am really unsure if this helps or it is just the problem itself lasting less time.Also, I take vitamins for well-being.

Currently I am six weeks into an episope. Well actually, one and a half weeks of flu, followed by four and a half weeks of dizziness.

I say dizziness but my symptoms are-
disorientation, feel like rocking on a boat, sometimes surreal feeling, shakes and vibrating feeling in whole body(which sometimes can be felt by others, with a flat palm on me), mental fog, lose train of thought mid-sentence, (when bad-even speaking sounds shakey)pressure in head, often freezing hands but near always freezing feet(unsure if related)bad memory(actually feel my life with this has really affected my memory).
Sometimes I feel it on waking, still laying down. Other times, like currently, the rocking and shakiness/dizzies begin 5 mins or so once on my feet. That's why I sometimes think it's BP related???
This current episode had an aura migraine at end of flu then it all began after that. Also this episode have woken to headaches/ not migraine, every or every second day,sometimes when going to bed at night too. Just taking nurofen. Also, some nights has taken an hour and a half to fall asleep as the pressure in my head feels like blood rushing or a vibrating soft lawnmower. This time some tinnitis too, which I don't usually have. Also, had blocked ears for the first couple of weeks. Began this bout trying the high salt intake(thinking NMH/blood pressure the problem)but after not feeling any relief and some days really bad worry that the high salt may be making matters worse if the problem is more like MAV which recommends low do you win????
I just wish the doctors would work in together to decide on one diagnosis or the other so you would know what to treat and which approach. I do realise this confusion happens because you try to get into all these doctors at once when you have it and they all have their own theory on what you have, then go about treating it their way. You come home, weigh it all up and try to go with what you feel works for you, or who seems to have understood and responded to you the best.

Sometimes this dizziness comes on in gushes or patches for one to two days. Then it lasts for it's duration(1-12weeks). It then winds down in patches of clearer periods for about a week. As this is happening I usually say 'touch wood- I'm feeling good' or 'oh, I'm feeling dizzy'-which makes me realise how good I was feeling 10 mins before. It eventually fizzles out to being gone.......Yeah! Life Again!!

As I am going stir crazy again have new audiology tests booked for this week.Haven't had any for twenty years. I have Prof Turtle booked for in a couple of weeks time to see if there is any new treatment in the last 10 years,though sure he will suggest the florinef again, indefinately. Have Prof Halmagyi booked for end of August( been booked for three wks already) lucky to get in but of course we all want our appointments with these doctors the minute these symptoms start) I'm also sure after reading these forums that he will begin me on the prothiaden again so I have a script from my GP and will begin that next week so I will be able to report to him when I get there if it is helping or not. Firstly though, I am currently trying SERC as never tried before but unsure after three days if it is going to help, feeling very spaced out today, though this computer reading and typing doesn't help. Stemetil also tried,has never helped.
If Serc doesn't help within the week will stop it as have read it usually has quick action if it's going to help. Have tried half twice a day for two days and so far one whole-16mg today, feel worse today than yesterday, not sure if tablet or just me. Has anyone had any success with it with my type of symptoms. Was told years ago I did not have Meniere's but with the ringing I have this time wondering if the Serc could help????
Could anyone please reply with success with the florinef or prothiaden with circumstances as mine too.
Thanks for reading my first posting, sorry it's so long but tried to cover all.
Again it's so good to know I'm not alone, it's amazing there are obviously thousands of us out there but I don't personally know even one person with this and at times feel like I'm going mad. Thanks All!!!

Last edited by dizzydame7; 07-26-2009 at 06:36 AM. Reason: Had forgotten some info.

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Old 06-26-2011, 09:46 PM   #2
Junior Member
Join Date: Sep 2009
Location: Alaska
Posts: 15
Scoobydoo77 HB User
Re: Wow! People Like Me/Life With Recurrent Dizziness

Have you been checked for a b-12 deficiency? I have had some on going issues and a dr just asked if I had ever been checked. She said that it causes dizziness and people tend to over look it. I notice you talked about cold hands and feet, that is one of the symptoms of b-12 deficiency. I was just reading up on it the other night. Might want to look it up! Good luck to you!

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