The Romberg's Connection 2009 Survey Results


Page 36. III. Associated Symptoms (page 2 of 4) cont.: Headaches
1. Please select the type/types of Headaches:
Affected Responses
% of Number responding
Muscle weakness14
Slurred speech9
Other (Specify) 8
Number responding = 61 / percent responding = 43% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.

Page 36. III. Associated Symptoms (page 2 of 4) cont.: Headaches
2. Comments for Headaches:
I would not say they are migraines- sometimes I have nausea associated with the headache sometimes I am sensitive to light and sound. They are normally located in the front part of my head and eyes.
Seem to always be there, though can be more or less severe.
I got migraines that lasted for months.
When I first got hit in the jaw when I was 8 years old I remember that night being in severe pain. I had such a migraine that I felt debilitated and very sick. The next day I was better but that's when the blue spot appeared on my jaw. Every 4 years I would get this same migraine pain and afterward I would get electical impulse twitches, then it would fade out and go away. But after this migraine I would see facial changes for a period of 4 years then it would burn out.
Not positive headache caused by Rombergs, due to allergies, it could be one or both ailments.
Sometimes sharp pains, sometimes dull ache.
The sinus headaches may or may not be related to Rombergs, but I believe that my sinus cavities are affected by the atrophy on the left side of my face.
They could last for a few seconds or minutes and sometimes hours....... it's not constant and not in one place..... it's a feeling like someone would hit you with a sharp and thin object like a very long needle.
I have headaches daily now. I think that this has to be the worst part of it because I am so uncomfortable.
I don't know that I would classify it as "migraines." Although it is confined to the affected side of my head (left) the pain is always within the area of indentation, not the whole left side of the head. It feels like a hard pressure and/or pulling apart in the indentation.

There's also sometimes a sharp/intense pain in my left cheek. I suppose this could be along the line of the indentation, and maybe is part of that, or it is the sinus cavity that's affected somehow.

It seems she gets more frequent headaches when it's more active.
Excruciating pain when in childhood and as adolescent.
My headaches get so bad that there are times I need to be taken to the ER for treatment. Other times Tylenol helps.
She has only complained of one headache that could have possibly been a migraine, the rest were what I call her regular headaches, managed with medicine and once it has taken effect she can get back on track.
Has headaches at least twice a week. Usually controlled by 1 or 2 doses of Tylenol. Follow up with Neurology.
Chronic headaches and migraines. I see a neurologist and take migraine prevention medication.
I have slurred speech especially when tired.
I used to get migraines and headaches a lot when I first got PRS. Now I only get 1 or 2 migraines a year and probably a headache every one or two months. Most of my migraines were the painless ones where I had problems with my sight, e.g. auras, slurred speech where I can't think of the words then can't get them out and I lose control of my right arm. I also lose control of my right arm when I am really upset about something or very angry.
light sensitive, noise sensitive
I assume they are related to Rombergs, but it is hard to tell for sure.
Unregularly periods of headaches, only on the right side of the head with great pain around and behind the eye.
have eased up significantly
NO fun!!! I used to get headaches nearly every day- I guess they could be attributed to being tired- I worked on the night shift back then, and two young children.. or stress...young children again..... not sure, but in 2004, I had the absolute worst headache ever on the right side - felt like a knife was being stabbed through and I asked my husband to take me to the emergency room which he did- they didn't do anything, but soon after my Neurologist did an MRI, and found lesions... go figure!
After headache started, takes Diclofenac to reduce pain. Fall asleep after a few hours and sleep for several hours. That day still very tired because headache costed lot of energy.
I always have a headache... it just how bad it is going to be today. Tried lots of meds and Motrin 800 is what works for me.
Its not just on my affected side, but in my whole head.
tension headches
We have to watch what she eats, no nutrisweets, chocolate, diet pop, no caffeine, no nitrates, no MSG, watch the sun, watch how much she reads.
Number responding = 28 / percent responding = 20% of total respondents (143).

Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.