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My Story: Looking for Answers

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Old 02-27-2012, 04:25 PM   #1
Join Date: Feb 2012
Location: UK
Posts: 2
Stevo1time HB User
Unhappy My Story: Looking for Answers

My symptoms started in August 2011. Upon waking I would feel as though I was dazed with brain fog like symptoms. These feelings would subside within a couple of hours. It was a feeling like I was still half asleep.

As the weeks and months went by these symptoms gradually got worse and upon waking I would feel lightheaded/dizzy and it would take longer for the symptoms to subside. It felt like the fist cigarette of the day or blowing up a balloon too fast.

I visited my GP (September 2011) who said it was vertigo and not to worry. After some research of my own the diagnosis of vertigo was incorrect as my dizziness was never rotational/spinning in nature. The symptoms continued to get worse and would be present 24/7 although still worse upon the first few hours of waking. I would feel jittery and shaky like Iíd had too much caffeine and also experience severe nausea although I never actually vomited. I felt severely fatigued and would not be able to concentrate.

I visited my GP again (October 2011) and was told I may have an inner ear infection and was prescribed betahistine and prochlorperazine for the nausea. I also had blood tests to check my thyroid function and, Iím guessing, a host of other things. My GP told me the symptoms should get better in a few weeks, they did not. The bethistine did nothing but the prochlorperazine was a great help for the nausea and the bloods came back normal.

Again, I went back to my GP (October 2011) who sent me to an ENT specialist. As the weeks went by waiting for the appointment I started to have daily anxiety and panic attacks because of how I was feeling. It was relentless, everyday, only wavering for brief periods during which time I ate, bathed and tried to get some fresh air. I very rarely left the house and spent most of the time sleeping and sat at my computer shaking. I noticed that the longer I slept, the worse the symptoms were upon waking and the longer it would take for my symptoms to become tolerable. I was starting to become depressed with this condition.

At the appointment (November 2011) the consultant performed the usual tests before telling me that there was nothing wrong with my ears especially as my dizziness did not have a rotational component. I should mention at this point that my partner is a nurse and we started to keep a record of my blood sugar and blood pressure. After several months worth of recordings both my blood sugar and blood pressure were fine. My blood pressure was elevated during panic attacks, as you would expect, and there was a slight increase in orthostatic blood pressure upon standing from lying down, but nothing too significant.

Back to my GP I went (November, 2011). He explained to me that at this point he had no idea what was wrong. My symptoms were so vague it was hard to pinpoint the problem and though all the research I had done I agreed with him. He ordered a full blood workup, urine analysis and an appointment to see a neurologist. The blood and urine came back fine but I had several weeks to wait to see the neurologist. By this point I was getting desperate. 24/7 everyday, all-day. A typical day for me would be to wake up at about 4 in the afternoon. Get up, sit in front of the tv/computer shaking and twitching, disorientated, dizzy and lightheaded, for 1-2 hours. Eat a bit of cereal/toast. Have a panic attack. Have, what should be my lunch around 8/9 pm. By this point my symptoms would be a little more tolerable. Continue to laze about until around 2/3 in the morning and have what should be my dinner but looked more like an in between snack. Hit the hay at 4, 5, 6 in the morning. Rinse and repeat. Now, I am a mature student (28), but even this is going overboard. The symptoms described including fatigue and anxiety have brought this cycle on.

January 2012 and a fresh outlook. At the neurologists, he ordered a brain MRI. His physical examination of me was fine. Had my scan early Feb and here I am, present day. Results came back fine. I am still suffering and still no closer to a definitive diagnosis. Iím due to see my GP yet again next week.

I should now mention that I had a pre-existing condition of heart palpitations. Iíve had them for two years and treat them with propanolol. The palpitations have been diagnosed as benign and not linked in any way to the symptoms I describe above. I have had for this condition numerous ECGís, 24hr holter monitor, 7 day cardiomemo, stress test and echocardiogram. Gpís and consultant tell me my heart is fine and not related to these other symptoms. I still continue to take the propanolol for heart arrhythmia and also for the anxiety. The dizziness/lightheadedness is the symptom that is still most prevalent.

Itís very hard to describe how it feels and how debilitating it can be. Whatís most frustrating is that from the outside looking in I would appear well .

To conclude,

Current symptoms (in order of most distress): Dizziness/light-headedness, nausea, fatigue, shaking/trembling, muscle twitches, anxiety, panic attacks, depression and insomnia/sleep rhythm cycle problems.

Current medications: Propanolol hydrochloride, Prochlorperazine.

Past Medications: Betahistine, Trazodone (Prescribed for my anxiety/insomnia which I took only one dose of due to side effects).

Sorry if thatís a bit of a long read but itís quite hard to explain these symptoms without telling a story. I need to know where to turn from here. I know I need to try and get my daily routine with regards to sleeping, eating and exercise back on track but should note that I was perfectly fine in these areas before my symptoms started.

I should also note that I donít use any recreational drugs or touch caffeine in any form. I take multivitamins including extra iron, magnesium and B12 daily and I am a smoker of about 15 daily (I know I need to give up).

Does anyone have any suggestions I could raise with my GP? Any investigative routes I could explore? Anything?

Thank you .

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Old 02-28-2012, 11:29 AM   #2
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Join Date: Mar 2011
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wellyoulookfine HB Userwellyoulookfine HB User
Re: My Story: Looking for Answers

Hi, really sorry to hear that you're feeling so bad. In short i've had a history (16 years) of fogginess/dizziness/lightheadedness/imbalance etc and finally i feel that i might be getting somewhere with a diagnosis. I generally feel "spaced out" amongst other symptoms and have come to realise that visual stimuli make the feelings worse. I'm convinced there is a mismatch between my senses to keep me balanced - either a vestibular problem or a proprioception problem which makes my eyes over compensate for balance, hence visual vertigo.

Some tips i would give you:
1)try to establish which of the above terms applies to how you feel - gps are very flippant when you complain of dizziness or lightheadedness, but it's important to work out what you do feel ie you've established that its not vertigo spinning so thats really important.

2)dont put up with a throwaway diagnosis if your gut tells you otherwise ie i was told i have MAV after 10 minutes with an ENT and a lack of questions or thought. To be fair there are so many possible causes and ruling out the most common must be done, but stick to your guns and dont let them talk you into something your adamant doesnt apply to you.

3) be honest with yourself about anxiety. Most of us on here have probably been told it's caused by stress and anxiety - both are a huge part of any balance or dizziness problem but you REALLY have to have a think about cause and effect before visiting your gp. I was told by a neurology consultant that my most recent job was the cause and to "take another few months to see if it clears up" - my problem started 16 years ago, i only started that job 7 years ago. On this point, i must add that they are busy trying to manage their time and i'm sure that for this reason many consultants and specialists focus on your records and dont actually listen to the majority of what is said at the appointment - be succinct but make sure you keep their attention.

4) try to establish what symptoms are caused by what (in light of the anxiety thing) - it's too easy to blur the lines.

5) make them work for you - dont be intimidated, esp when you've maybe been waiting months for a 10 minute consultation - use the time to your advantage and (i'm not saying be rude, these people are under pressure) make it clear that you know yourself very well and that something is not right and you insist that some tests are done. note: on 2 occasions when i've said (really politely) that i'm not happy with the outcome of a consultation, the specialist has then spoken to a colleague about my case afterwards and sent a letter to my gp stating any later considerations - for this reason it might be worth writing a succinct list/description of your problem as it's difficult to remember all the vital symptoms when your "on the spot".

Good luck

Sorry, meant to say, your list of symptoms - i would say that the list from "shaking/trembling" onwards are all the anxiety effect of the dizziness/lightheadedness. I've suffered from anxiety, sweating, headaches (tension), stomach upsets, panic attacks, etc and i can definately put them all down to imbalance and lightheadedness - it really takes a lot out of you physically to maintain balance and go about your daily business feeling like this, and i think an important thing to say is that the anxiety it causes creeps up on you, very much a subconscious thing at the start.

Last edited by wellyoulookfine; 02-28-2012 at 11:38 AM. Reason: Forgot to add

Old 02-28-2012, 03:05 PM   #3
Join Date: Dec 2010
Location: San Francisco, CA
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bindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB Userbindar HB User
Re: My Story: Looking for Answers

Do you have a history of migraine or anxiety? Its most likely migraine associated vertigo, or chronic subjective dizziness. Both disorders have similar mechanisms, and the treatment is almost the same. I would suggest trying Nortriptyline, starting at a low dose of 10mg, and increasing it every few weeks until you start feeling better. You could also try Celexa, starting at 5mg or 10mg, and increasing to 15mg or 20mg after 6 weeks.

I am not a doctor, this is just from my personal experience. I have very similar symptoms, and Nortriptyline helped me. Talk to your doctor about these medications.

Last edited by bindar; 02-28-2012 at 03:06 PM.

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anxiety, dizziness, dizzyness, light headedness, nausea, panic attack

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