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Lightheaded, headache and BP Fluctuations

I have been having some mysterious health problems, starting about 9-10 months ago but have been getting gradually worst. In the beginning it only bothered me every once in a while. Now it is everyday and becoming debilitating. My doctors don’t have any clear answers yet and seem rather stumped so I was looking for some other opinions.

It all starts in the morning when I get up with headaches, visual dimming or blurring, lightheaded, feel like I will faint. If I get up very slow, sit back down at first sign of symptoms, episodes are better and shorter. If I get up quickly or try to push through it gets worse and may last all day but milder that onset. A lot of days I feel dizzy, lightheaded, have a headache all day, feel foggy, can’t think and tired, basically feel hung over. The worst episodes are in the morning when I get up but can also be brought on by heat, like if I‘m outside in the cold and then come into the house which is warm and the heaters are running or if I take a hot shower. Also lifting my hands above my head or sudden exercise such as chasing the kids around. It is not so bad if I plan on exercising and warm up very slowly.

My primary doctor thinks it is some sort of headache/migraine syndrome and had me read a book called Heal Your Headaches with the 1-2-3 Program. The 1-2-3 program is stop all drugs that cause rebound headaches, go on a very limited diet that eliminates all headache trigger food, and there are a LOT! I have been trying it for about two weeks, though I haven’t stuck with it supper strict just because it is very difficult to never eat anything on the list. And then start a headache blocking type medication, the list was long, but only after being on the diet for at least two months.

I have been to an ear nose and throat doctor and she says I do have some sinus inflammation but no fluid in my ears. I’m taking Floanase and Claritin. She doesn’t think that has anything to do with this problem. She said it sounds to her like Neurocardiogenic Syncope, but I’m not actually fainting.

Then I went to a Neurologist, who is also a balance disorder specialist. They did a bunch of balance testing. They said I don’t appear to have any neurological problems but I do have mild motion intolerance and suggested balance therapy. But again not the major problem. They think it has to do with my blood pressure and are referring me to a cardiologist.

They had me start taking my BP in the mornings. When I’m lying down before I get out of bed my BP is around 137/54, a few min after I get up it drops to 84/48, one time it went down to 67/34 within a few min.

I have a history of high BP and have been on HCTZ 25mg for years but when this problem started to get bad my doctor had me stop taking it, which was in November.

I also have TMJ, have had it for about 20 years, I wear a bit plate. My TMJ doctor says that would not have anything to do with my current problem.

I also have endometriosis.

I am also seeing a councilor for some issues with anxiety, depression and stress. She wrote me a prescription for Welbutrin but I have not taken it yet. I want to get to the bottom of this other problem before I add anything to the mix. Welbutrin is also listed in the headache book as a possible headache/migraine trigger.

I have been to see massage therapists, physical therapists, chiropractor, and acupuncturist for the headaches. Nothing has made any difference. It has continued to get worse.

I have been taking 2 Aleive every twelve hours most days for months now. I’m sure that is not good for me or my stomach. Along with the dizziness and lightheadedness, I'm feeling rotten most of the time. I have also lost about 20-30 pounds over this course of time without really trying. Down to a size 4!

At this point I’m just waiting on the referral to the cardiologist.

Any thoughts or points to make to the doctors would be great.

Thanks so much.
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replied July 8th, 2010
Neurocardiogenic Syncope
I have a similar condition, some differences but I was diagnosed at the age of 14 with Neurocardiogenic Syncope which when I would faint I would go into what is like a seizure and with many test's and hospital stays they realized my heart was actually stopping causing the seizure like activity when I went out. I actually have low bp too. They ended up putting a pacemaker in at the age of 14 to avoid my heart stopping but it didn't help, I was also on as many as 12 salt tablets a day trying to get my bp up. I would have some good days and some bad but more worse ones. I am now 21 and last year was put on Midodrine which to my surprise this doctor was the first to ever get it right, it has truly helped me and improved my way of life making working and other tasks easier. He is a cardiologists but also an arrythmia specialist... hope this helps.
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