Join Date: Mar 2012
Location: Portland, OR
| | Does this sound like a migraine variant?
I can't get doctors to take me seriously. They latch on to ONE symptom and ignore the rest. Today I saw a neurologist. He latched onto the headache symptom and told me he wasn't going to run any tests on me. Two years ago, a doctor latched onto the vertigo and told me there are 250 causes for vertigo and so they couldn't help me. They won't even listen to the whole list. I've been to emergency rooms, urgent care centers, specialists, regular doctors and I still have no diagnosis. I have been struggling with this for 4 years, but experiencing symptoms for 10 years.
This illness is ruining my life. I have lost my job (2009) due to an attack. I had to send my kids to my dad and move in with my mother (2011) due to another attack. I'm about to lose my job again because I can't work with these symptoms. I desperately need help and can't figure out why I can't get a diagnosis and treatment.
The neurologist I saw today wrote this out for me: "I am treating you as though you have a migraine variant.and starting you on acetazolamide, moderate dose. You can let me know in a couple of months how you have done (I'm assuming you will be better by then regardless) and we can decide if you should go off this med. I am not ordering any tests at this time. Contact me near the beginning of another spell, should that arise."
That is ridiculous. He didn't say how the medication would treat my other symptoms and when I asked, he said we should start with the headaches. Do my symptoms sound like migraine issues? Here goes:
History of Past Five Attacks
2012 Attack (March 24-present)
At physical therapy in March 2012, I ďsawĒ black flies flying all over the room. The hallucination only lasted about 25 seconds. The next day my boss told me my pupils were different sizes, and they were. They stayed like that for several hours, then went back to normal. Before and after the surgery, I intermittently have a feeling there is a lump in my throat. I occasionally have a dry mouth for several hours a few times every few days, as well.
*Constant headaches (sensitivity to sound, light, heat and cold; nausea; feeling of pressure).
*Extreme heat sensitivity (I can't wash dishes or carry something warm in my hands for more than a few minutes. I get faint if I take a hot shower or if I go into the bathroom when one of my kids is in the shower. I hate hot tubs, baths and jacuzzis because they make me so weak)
*Tingly face and hands
*Dizziness and light-headedness, sometimes feeling faint or going black behind my eyes for a few seconds (as if I was going to faint).
*Tired muscles, extreme fatigue. Exertion, even climbing stairs, can make me feel faint (sometimes it does, sometimes it doesn't). Heavy head, can barely hold it up after working all day.
*Slight vertigo (a vague feeling of vibration/motion and a swirly feeling)
*Tender, crawling, achy muscles over entire body (body aches, kind of), especially legs.
*Shaky muscles: weak, shaky legs, hand tremors, twitching and sense of vibration.
*Occasional chest tightness like having tired ribs or sitting up straight for too long (this has been happening periodically for probably 10 years). Sometimes accompanied by the feeling I have to take a deep breath or yawn to feel like I can breathe properly.
*Balance issues (slight but present. Inner ear issues ruled out)
*Difficulty concentrating or following conversations at times; mild memory problems and forgetfulness. I have trouble finding the right word, and I constantly type homophones (write instead of right, tale instead of tail. I LOVE grammar and this is a change that bothers me).
*Symptoms worsen in bright light, looking at computer or TV screens, while wearing contacts/glasses, while attempting to focus (reading, computer work), in heat and under stress, but eliminating these things do not eliminate symptoms.
*Abdominal and pelvic pain (endometriosis, fibroids, interstitial cystitis ruled out)
2011 Attack (June 6-July 31 2011)
In April 2011 I had a small outbreak of warts over my hands. Iíve never had ones like it before. In May, I developed 2 plantar warts on the sole of my foot. I havenít had those since I was 9-13 years old. Bad headaches in May.
Vertigo (rocking, bobbing, and rarely spinning or turning)
*Weakness, shaky muscles, muscle twitching
*Sensitivity to heat, bright light and exertion (causes headaches, twitching, extreme weakness)
*Abdominal pain, joint pain
2009 Attack (Sept 8-Nov6 2009)
*Vertigo - constant feeling of rocking. It does not change in intensity with movement or rest (I feel the rocking whether I am laying down, sitting, or standing), but is worsened by heat and exertion (playing with the kids at the park, etc). It also feels worse in small, enclosed spaces, and seems to lessen in wide open spaces (big rooms or outside).
*Pressure on my ears as though I am diving or in a plane, but it cannot be cleared.
*G-forces that feel like someone is pushing the back of my head forward. Sometimes I feel the g-force in my lower back, pushing forward as well. The force sometimes actually moves my head forward. Sometimes it pushes to the left instead of straight forward.
*Inability to walk in a straight line, made worse in long thin hallways.
*Feeling like I am walking on a trampoline or just stepped off a treadmill while walking. The floor actually feels bouncy (which is actually a cool feeling, if I could get it to go away once in a while).
*Light headedness - Upon standing up, I feel faint and often get visual black outs for a few seconds.
*Heat sensitivity (can feel weak just using the hair dryer)
*Insomnia - it's hard to sleep when the bed is rocking and tipping.
*Extreme fatigue - probably from compensating from the rocking feeling and from not sleeping.
*Headaches Ė migraines? From being over-tired?
*Symptoms worsen while using a computer, reading, writing or watching TV
*Sensitivity to loud sounds, grating sounds, clicking, etc. They physically hurt my ears and I am very irritable about it.
*Sensitivity to bright lights - people have commented that my eyes are dilated.
*Feeling confused or not being able to put my thoughts into words as succinctly as I usually do. I find myself explaining something several times before others get what I mean.
*Loss of appetite - I've lost 4 pounds in the last 3 weeks.
*Achy and tingly arms and legs, especially while laying still.
*Muscle twitches over my entire body.
*Feeling like my heart is beating fast or irregularly (up to 160bpm as recorded during one ER trip)
2008 Attack (Sept 2008)
Description (as recorded by myself, 9/19/2008, after returning from a week-long trip to Belize):
Even though I've been back on land since Tuesday night, I am still rocking incessantly as if I've just gotten off a boat. I felt like this on the trip too, but attributed it to the fact that I really HAD just gotten off a boat, plane, van, bike, kayak, or golf cart. Or had just been swimming. Anyway, I chalked it up to a strange motion sickness that doesn't make me feel SICK, just unstable on my feet. I am sensitive to sunlight and just about cry if I forget my sunglasses (which I usually don't wear). I can hardly walk in a straight line. I feel like I'm rocking and swaying, even when I'm not moving a bit. The weirdest part, though, is that I feel FINE. I am just dizzy. By the end of the day yesterday and the day before, I had a headache and was very tired from compensating from the feelings of motion, and I fell asleep at 8:30 both nights. But when I wake up, I feel great and normal, with no sinus pressure, no ear aches, nothing, just completely dizzy.
I believed the dizziness, fatigue and headaches (all mild) were due to the malaria medications Iíd been taking. The attack lasted 3-4 weeks (3, tapering off over the last week), and I didnít expect it to ever happen again.
2003 Attack (June/July 2003)
In Madagascar, following many long and short plane rides and a few boat rides, I felt wobbly and strange in my head. I felt like I was walking on a trampoline, and that things were moving past me faster than I was walking. It didnít bother me much, and persisted about 2 weeks, then disappeared over the next 2 weeks. I thought it was a side effect of the malaria medication.
In 2002, I first started to get heat sensitive. I fainted in the shower once and didn't regain consciousness until my husband pulled me out and into a cool room. Once I cooled off, I was fine. When we moved to a new apartment, I was so heat sensitive I couldn't stand up. My 70 year old grandparents had more stamina than I did.
By the way, I am a 30 year old female. 5'5" and 140 pounds. All of this started when I was 20. I brought this chart to my doctor and he wouldn't even look at it.