Brain fog, dizziness, vision problems, head pressure, headache PLEASE HELP

Hi Lynsey

Im hoping that in the last 4 months you have had answers and help from doctors and are now recovering. I felt compelled to tell you my experience so far. I have most of the symptoms and have since 2011 when I was diagnosed with migraine with aura. Since then I have been on Topiramate which is an anti epileptic type migraine drug. In December 2015 I had a small seizure which led to me having another Mri scan and new appointments with a neurologist. It was only then that I discovered that in 2011 my original mri scan had shown a pineal gland cyst which was 10mm in size. Since December 2015 and now I have had 2 further mri scans, one with contrast, and the cyst has got slightly larger by 4mm. My neurologist is adamant the cyst is incidental, my symptoms are unrelated. I am starting a new prescription of Duloxetine which is in my case for nerve related pain. My next neurologist appointment is March 2018 at the new Queen Elizabeth hospital in Scotland. I am 60 now. I had to stop working and no longer have a social life or any real quality of life. I'm not depressed. I'm angry at being misinformed.  I hope you are fully recovered and enjoying your family. If you have to, keep pressing the doctors for answers. It's your body. Your life. Good luck. x

 

hi did you ever get any further with a diagnosis. I read this thread with interest. I had a lot of similar symptoms and was diagnosed with a form of vasculitis 13 years ago. Took me a long time to be diagnosed. It is a long time since this thread appeared so not sure you are still looking in here any more but hope you found some answers. 

Hi Margaret! What type of specialist did you see to get the diagnosis? So happy for you that you were able to figure out what it was! 

Well I was referred to a rheumatologist initially who recognised I had an underlying inflammatory condition. She referred me to an oral immunologist who tentatively diagnosed a form of vasculitis then I moved onto an immunologist who diagnosed me after a year of testing and observing of symptoms. Can be a difficult process but I was so unwell and desperate for answers. Once I got the diagnosis everything fell into place really. 

Hi Margaret,

 Very interested in hearing more about your story. I looked up vasculitis and found many interesting things on it that seem somewhat relatable to what I'm going through as well. How and why were you referred to a rheumatologist to begin with? Did you have any skin symptoms? Along with all the brain fog dizziness and many of the other symptoms Elise listed, My hands have had extreme rash and itching  as well as becoming white/tight  when fully extended. I've been struggling with this just as much as the neurological symptoms.  I've also had tingling in my left foot. All of the symptoms started after the antibiotic Flagyl in February. I did read it can be caused by medication Toxicity or autoimmune disease. Id really appreciate your story of your symptoms and what made the drs think you had vasculitis. Thank you! 

hi Bonnie, thanks for the message. What interests me about your story....you say you had an antibiotic and then you felt bad. But what did you have the anti biotic for?? It may be coincidence and you had the genetic profile and some kind of infection kick started you on that course. They believe at the moment that vasculitis is there in our genetic profile. But some of us have the faulty gene but it is never activated. For others we suffer an infection or whatever. The immune system gets kicked into overdrive and it just sets off the reaction. The faulty gene is spurred into action and, alas, never calms down again. 

My story is that I was born with something wrong...I think I had a childhood form of vasculitis and it went into remission of it's own accord when I was about 7. Medical records have been lost so can't confirm that. But I know the symptoms were the same. 

In my 20's I began to get unwell but not in a major way. But got worse and worse as the years went on. Every decade seemed to be worse. Had a diagnosis of ibs (which I didn't have). Rolling on into my 30's got wheeziness. Everyone trying to treat me for asthma which I don't have. Then the fun really begins late 30's the fun really begins with major dizziness, fatigue, some issues with my throat. Inflammation there, feels like infection but nothing to be seen. Ears are a bit problematic. Sore and aggravated. Chronic sinus problems. Then the killer migraine with almost hallucinatory quality. Aura going on, feeling seasick. That feeling described here as being pulled towards the floor during episodes. Pain in my lower back. Sciatica. Hearing going dull then recovering. Then I get joint pain. Dreadful fatigue. Stomach and bowel issues. Not much effect on skin. I get the butterfly rash associated with Lupus sometimes but not always. I also get hives sometimes but not the classic vasculitis rash. Heat intolerant. Feeling faint, feeling sick. When I go from cool to hot climates that used to make me feel very unwell. Brain fog, forgetfullness. 

Lots of symptoms. So my gp is about to diagnose me with chronic fatigue but says she wants to cross all the t's.She refers me to a rheumatologist. She recognised straight away that I had an inflammatory disorder. She referred me to gastro to query inflammatory bowel disease and also to an oral immunologist to query Sjogren's. When I saw the oral immunologist she suspected I didn't have Sjogrens but another form of vasculitis. She wanted me to join her clinic but I opted to go elsewhere instead and was referred to an immunologist at St Barts in London. A year down the line and I was diagnosed. Long process. But very worthwhile. All of the symptoms you're describing are symptoms of vasculitis. There are a myriad of symptoms and some people only have a few and some have so many. Just depends on how the illness affects you. 

Bonnie, I would add looking at your postings that I had dreadful neck pain and also I have problems with my eyes never fully explained. Pain and pressure behind them blurred vision. I had one episode of uveitis but that was the only time I actually had anything 'wrong' with my eyes. All of the other symptoms are just part of my illness. I used to have pain in my eyes almost constantly at one time. 

 Thank you very much for taking the time to explain your story. I appreciate it. My main problems are a feeling of disconnection and a foggy dreamlike state the majority of the day. Total brain fog. As far as the antibioticthis is when all my symptoms started. I was only taking it for bacterial vaginosis.  At first I had dizziness and balance but that has subsided for the most part. I still feel as if something is off in my head and I just feel like a different person in general so I've been thinking that I have antibiotic toxicity. But as time goes on I'm not sure and the rash on my fingers is just   Really hard to figure out. Definitely looks like loss of blood flow though.   I've had 1 million tests but plan to speak to my neurologist about this possibility next month.   The eye issues are not anything to do with actual vision or blurriness or pain. It's more like having trouble focusing and really experiencing anything I'm looking at.  Anyway thanks again for sharing and it will definitely be something I bring up to my doctors.

The bloodflow and blood vessel thing really does peak my attention though given my symptoms and the lightheadedness and foggy head. Actually I meant to mention  in my last post that a chiropractor I saw in the past couple months told me that the hand issue looks like a blood flow problem as well as the dizziness. I think he was referring to a possible structural issue with the spine though, impeding nerves or blood flow 

Hmmm well the other issue which can arise with vasculitis is a kind of Raynauds phenomenon. I wonder what the rash looks like. There are various skin things which can happen with vasculitis.

Word of caution...a neuro was completely unable to diagnose me. It isn't a neuro problem. Even after diagnosis I saw a neuro I was referred to by my vasculitis specialist to rule out neuro involvement. It can happen. She told me she was unable to make a diagnosis. Don't expect too much there

The zoning out...very common. I have that too when unwell. X

Unfortunately I don't know how to get referred to anyone else? I got the neurologist referral to a research hospital because the neurologist in my area was pretty much stumped. My general practitioner is kinda useless but Would you advise going to her and bringing up the vasculitis? Did you say it was your gp that referred you to rheumatology?

Yes it was. And they should refer you on. Are you in the uk?? If so phone the guys at Vasculitis uk. So helpful. Free helpline number. If not in uk let me know where you are. Hope it isn't Australia. Pretty bad there on vasculitis. X

I'm in the United States 

Specifically Illinois/Iowa

Ok so you have the Vasculitis Foundation of America. Pretty good resource there. Ask them for advice on where to go x

I am part of a help group on facebook which is international. Will ask my American friendss there for reccomendations. X

Hi Bonnie. I rarely respond to these types of posts, but when you mentioned the brain fog and reaction to Flagyl, my mouth dropped. If possible, you may want to be tested for Lyme disease and/or bartonella. DO NOT let doctors tell you that it does not exist in your area or blow you off. It exists everywhere. Many doctors don't even test for it because they say it is confined to certain states, but that is not true. I threw a Christmas tree out a few years ago that was COVERED in ticks, and of course the tree was grown in the north and sold in the south. It's that easy. Every single thing you described is what I went through and I suffered for 2 years, panic attacks for no reason, brain fog/ memory loss, extreme fatigue, dizziness. I felt like I could not wake up from a dream. I saw so many specialists and no one could figure it out. I finally saw a neurologist and he ran an ELISA test for Lyme, which I had never even heard of, and it came back positive. Funny part is when I went back to my PCP, she ran a different test that came back negative, but she treated me anyway. I cannot express in words how much better I am. It took almost a year, but I have recovered. FLAGYL and most antibiotics cause something called a Herxheimer reaction, when you have Lyme or any of the co-infections. It is caused by the toxins released by the bacteria kill off---people that do not have it, will not have a Herx reaction to antibiotics. Lyme is a multisystem disease so it affects your heart, nervous system, eyes, everything. Please look into it more, and even if you don't think it's Lyme, it won't hurt to try some of the natural remedies to treat it and see if it makes a difference. I hope you fell better.

Hi Val,

Thanks so much for Responding!! Did you personally take Flagyl and this happened? I've just read so much about Flagyl doing this to people who have a compromised gut/stomach issues for years- which is me. I haven't heard the connection of Flagyl specifically causing Lyme to come forth in the body. I had bloodwork done for Lyme through my neurologist, but would this not have been an ELISA test specifically? Is it covered by insurance? What' did your dr do to treat your Lyme ? I am so happy to hear you have recovered- that's great for you. Did you take natural healing steps? I am terrified of anymore antibiotics to be honest! Thanks so much for discussing with me! 

Hi Bonnie ,

Have you had a micro dental scan to check for a tooth infection ?

Hello, 

About a year ago I had a regular dental exam checkup. I usually go every 6 months, so I am overdue. IVe been avoiding the appt bc of how I feel actually! I’m always afraid things will make me feel worse. Is the micro dental scan something different?? Thanks 

What meds did you take to treat lyme ?? Do you have any symptoms left after treatment ??do you stI'll suffer from brain fog and memory issues ?