Hi please help me.
I’m a 21 year old female and I’ve been having this pressure in my head and foggy brain for 6 months. It all started when I got back from Europe (I should note that I did go on a cruise to Mexico a few weeks before and some say this could all be MDDS... but I didn’t even get sea sick and I am not dizzy— I’m lightheaded). I was fine, and 3 days later I got the flu. I was in bed for 20 hours and couldn’t move. Ever since that day, I had a weird feeling like everything I looked at wasn’t real. Or as if there was a film between me and world. The typical feeling you have during the flu (or at least I do). Two months later is when the real stuff began. I got some good news from a friend about a party, and during my celebratory dance, the lightheadedness/faintness just hit me. It was so weird because before then, the only time I ever experienced lightheadedness was if I got up too fast from laying down. I went to primary care low vit D and B-12. Started supplements and B-12 shots. Then moved from southeast (Georgia) to Albuquerque and it all got so much worse (Altitude I’m assuming). Got mri, ct scan, eeg, ver, baer, blood work and no alarming things in the results. They said I had sinusitis, but after weeks of Allegra and Flonase, that was gone. And I’m still left with the debilating lightheadedness. Sometimes it’s hard to even leave the house because I feel so faint and out of it. I will say, when I visited Florida for a few days, I felt a little relief, but not 100%. I’ve stated acupuncture and he has me taking the Buplereum & Tang Kuei Formula supplement and the Blood Palace Formula supplement. It’s only been 2 weeks of that, so I don’t have real results yet. Every day i wake up and i hope it’s all gone and cleared up like a cold, but after about half an hour, i feel that woozy feeling in my head again and i have to try to power through. I should also say that I have lots of blood work and no doctor detects sickle cell or lupus.
Has ANYONE been through the same thing and have found answers? I’m desperate!!!! I work long hours and I love my job. I want to be able to enjoy life without being miserable everyday. Please help!!!
Avoid all alcohol and caffeine , and take multivitamin/mineral supplements +extra vit.D daily , sleep no less than than 8 hours . See if it helps
Do you get more lightheaded in the presence of fluorescent lighting ?
Also consider being tested for tropical diseases including parasites, or an early onset of diabetes.
I do get some light sensitivity to the sun, but I’m not sure that I’ve been exposed to flourescent lights enough to know about that one. I’ll try the parasites testing as well. Doctor ordered it w other tests, and once it came around to get the results he noticed he forgot to order the parasites testing. Thank you
Sounds like dysautonomia or POTS. It can be triggered by viruses. See a cardiologist who specializes in dysautonomia.. Google Dysautonomia Information Network for info and to find a Dr in your area. It is treatable. My daughter has it and is doing well now. Just my opinion, but it cannot hurt to rule it out.
Thank you. Was your daughter sufferening from lightheadedness as well? Or did she have other symptoms?
There are different types of dysautonomia. My daughter had lightheadedness, a history of lightheadedness when getting up fast, head pressure, brain fog and trouble concentrating. She also had rapid heart rate at times and rarely chest pain. Hot showers made her worse. The Dr she saw was a pediatric cardiologist specializing in dysautonomia. She was 12 at the time. He gave me a wonderful handout, plus I did lots of research. There are different subtypes, and some of the symptoms will vary. There are meds, again depending on the symptoms/types. Lifestyle changes that help to some degree are to exercise more AND the correct way, (even tho that feels impossible), use of compression garments, avoidance of white sugar/flour, and in some cases, gluten, keep well hydrated, and some supplements. Her case wasn't super bad. She got better with time, hydration, and diet change. She still has symptoms, but they're not as bad. Some people are disabled by this, unable to work or get out. Fortunately, she was not to that point. Do some research, and find a Dr who is familiar with this to evaluate you. Your age, symptoms, and history of lightheadedness when getting up too fast all point to this. Don't accept an anxiety diagnosis without a full workup for this by a knowledgeable Dr.
Thank you for the thourough info! I’m going to look for a cardiologist
Just make sure it's a cardiologist that specializes in dysautonomia.
I wanted to come back here and say that I went to a chiropractor, and he realigned me from my knees to my neck. I felt some relief from the lightheadedness for a day, but then it came back.
Kina, I went to an upper cervical chiro for abt 3mos. I believe my dizziness has a different cause than yours, but at any rate, the treatments helped substantially at first. I really thought I was onto something. But the relief got shorter and shorter between adjustments. So I don't go anymore.
I've read that chiropractic adjustments release endorphins, the feel good hormones. It's possible that your relief, and that of many others, is related to endorphin release, not necessarily an "alignment" process.
Ahhh that makes sense. Well I am seeing an audiologist tomorrow morning. I’ll come back for an update with what they advise.
The audiologist diagnosed me with “silent migraine” which is what I’ve seen a lot of people with my problem be diagnosed with. I told him that couldn’t be right. I’ll keep searching for a POTS specialist.
Silent migraine is a diagnosis of exclusion. Sometimes there are symptoms besides head pain that suggest migraine, like certain visual symptoms. But mostly it's diagnosed by excluding other conditions. To complicate the matter further, migraine is commonly associated with dysautonomia and POTS. I know you are looking for a POTS specialist- if u cannot find one in your area, ask your Dr where you can get a tilt table test. Also, most university hospitals can evaluate this. Or you could always try migraine preventative medication to see if it helps....
Do you think you get headaches? Have you been to an ENT, neurologist, otolaryngologist?? I saw the otolaryngologist this past Monday and I have to say what an expert finally I have found the right doctor. I think several things need to be ruled out such as vestibular nueritis. I had a similar thing as you. Had travelled to Jamaica 9days before this happened to me. Was diagnosed with sinusitis and BPPV, the vestibular neuritis ect ect. But I think you need to find a doctor who specializes in dizziness hence the otolaryngologist. While my ENT kept asking me if I was sure that I didn’t hit my head and the neurologist said I just might be disabled forever-this doctor asked had I had foggy brain?? YES- he said that a symptom. He had a entire list of symptoms that I had which validated my illness. I also work and I am a mother and I was terrified I was going to have to quite my job, I couldn’t even care for myself. Don’t lose hope research that type of doctor in your area.
Also I would keep track of your symptoms such as headaches dizziness fogginess confusion nausea. It helped me because my memory was so bad. When I had these symptoms I started adding them to my calendar on my iPad to bring to the doctor. Otherwise I would forget to mention things. I am on a medication now that has wiped out most of these symptoms the doctor is now going to increase it slowly until all the symptoms are gone. If you see a doctor that doesn’t know move on to another one. Had I not pushed and pushed and not accepted that I will get better with time, I would still be confused and sitting here not knowing what was going on around me. I still have vibration in my ears and get tired easy and only a few things bring on the dizziness now. Since I kept track of it I was able to tell the doctor what I was like at my worst and what I am now since I started the meds. Don’t just accept you will get better with time... don’t accept they don’t know... there are doctors that do know. My third diagnosis is vestibular migraines. You don’t even need to feel the headaches to have this.
Were you on any type of meds before this happened ? Vaccines ??
Have you had a lyme test done ?
I did have the flu vaccine. I don’t believe Lyme disease because I’ve had a lot of blood testing and I don’t have any of the symptoms.
I haven’t heard of the tilt table test. I’m going to look into it.
Thank you so much for the detailed response. What medication does your otolaryngologist have you in that is helping you recover?