Sticky Blood-Hughes Syndrome Support
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Buzzing headaches that occur in waves

Has anyone else had headaches that hit suddenly, intensely, and literally stop you in your tracks? It's the way it comes on that frightens me. It could happen in the middle of a sentence, walking down the street or watching TV. I've had them waken me out of a sleep. My eyes water, I hear a Buzzzz that blocks everything else out and I have no alternative but to just wait for it to disappear, hopefully but not usually, as quickly as it appeared. The pain is so intense it immobilizes me. Duration and frequency change. I am managed on one 325 mg aspirin/day for APS and 1 mg. Clonazapam 2x day to stop stuttering, severe right hand tremor, weak left side received via stroke (attributed to CNS vascuitis) about 10 yrs ago, and a trial of CQ10, 300 mg./day, in hopes of decreasing muscle/bone pain. Since the headaches were there before the trial of CQ10, I've ruled that enzyme out as a cause. It was witnessed by my MD as one happened during an appointment. Dhe did not think it a migraine as we timed it in her office and it lasted about six minutes. She offered to send me to a headache specialist, but I declined and now I wonder if that is the way to go or if its more money for no answers. I've just had so many doctors (most of which I have worked with) that have differing opinions that I've lost faith and trust in them. What say the APS population here? Does anyone else have headaches that manifest in a "wave" pattern and loud buzzing sound?

6 Replies

Also, I am managed on 72 hr., 100 mic. Fentanyl patch and Vicodin and medical marijuana as needed for pain.


Hi Canary ... so sorry that you are having such unsettling headaches.

Unfortunately, in my experience, I have really bad headaches for the past 12mths and they have increased in intensity. I've gone from the headaches like you have to full blown migraines that can last anything from 24 to 72 hours, it then goes and comes back again 24 to 48 hours later. Yes, mine wake me in the night and in the end I couldn't stand it any more and asked to be sent to a neurologist about the headaches as I had MS symptoms with it. After MRI of the brain no tumours or MS symptoms so, it is the APS telling my body you have MS ... bummer. I'm now on Gabapentin 600mg three times a day for an unconnected problem and it seems to taking the edge off the migraines but I still get the brain fog and forgetting words, what objects are called, my name and other things.

I can't tell you what to do I can only give my opinion and, if it was me, I would go for the appt with the headache specialist (Neurologist). I'm just sorry that it is going to cost you more money to do it. That really sucks :(

I've also had appts with Opthamologists and had tests on my right eye as I was having double vision ... they also came back clear.

To me APS is horrible and I wish there was a miracle cure ... hopefully one day there will be.

Good Luck Canary and keep us all in the loop. I really hope you get the help that you want for the headaches xxxx Trey xxxx


Thanks for responding, Trey. My rheumatologist is suspicious of MS! There is another consideration. There is much controversy here in the states about the gadolidium (dye/contrast) that they use with MRI/MRA's. Many studies have linked it to damaging the entire renal system. Is that right? I mean kidneys, bladder, etc. Since my illness became neurological, 10-12 years ago via stroke, I have had over 30 MRI/MRA's (this was before they linked the contrast) with contrast. That, combined with the contrast they had to use for all the other tests, brain biopsy, one where they enter the camera through the groin and take a peek at your heart, another where they take a camera and enter it through the artery that is not the carotid up through your neck to your brain. I can never remember the name of that other artery. Each of those were performed within a 10 day inpatient stay at the teaching hospital I worked at. My neurologist was the one who got me the diagnosis of CNS vasculitis. Frankly, I think he would have killed me if I hadn't fired him under the advice of several MD's I worked with. My rheumatologist actually saved my life with chemo. Unfortunately, the chemo (Cytoxin) gave me bladder cancer, which I am still at war with. (9 months- no return yippee!)) The neurologist had so overdosed me on steroids that they will never give them to me again. They said even the slightest amount of steroid would have the chance of creating a psychotic break, which I also experienced and spent 10 days in the psychiatric unit due to steroids (80 mg Prednisone/day for almost 1 year). They are also worried about the contrast in MRI/MRA's. They can be ordered without contrast, but it will not be as revealing and would probably miss the microscopic nerve damage they were looking in a dx like CNS vasculitis. Like an open MRI, it is a waste of money because it is not as precise as a closed MRI. But, if you are clostrophobic, an open MRI is better than no MRI. They forgot me in an MRI once so I'm a bit clostrophobic myself. I did manage to crawl out from under the thing much to the surprise of the attendant. I will not mention what I said to him here, but I'm sure you can imagine. At that time, I did not have the dix of APS. I doubt they would have chanced even one of those tests without a blood thinner had they known. I'm very lucky to be here at all and very thankful. Today, I decided to take a little break from this site. I'm making mistakes, getting diseases nad symtoms mixed up and feel I'm too symtomatic to give anyone else any opinion or support of mine because I know I not doing so hot. Before I had my stroke I had been diagnosed with migraines. They gave me an injection, I can't remember what it was, but since it did not get rid of the "migraine" they decided it was not a migrain and began looking for symptoms of other diseases. I don't recommed getting treated where you work. Too much "elevator advice" that doesn't get documented. On the other hand, what facinating career I had. I'm actually afraid to go through those tests again. I know they would want comparison studies after 12 years. There's a movie here called, Young Frankenstein written by Mel Brooks and Gene Wilder. In it Madelyn Kahn has a part in which she says in a Marlena Dietrich way, "I'm so tired!" Well, I'm so tired! Thanks for your help and support, Trey. I hope you are well at this time. I'll check back when I feel better. Thanks again for your kind repsonse.


I have had a headache day in day out i can not think, forget words mid way through what im saying. I can not walk far without a stick as the pressure is so bad, i feel like im turning into a horrible nasty person as i can not control my temper any longer either, have had 3 MRIs and have white spots in my brain


Canary and Karen--Are you taking warfarin or heparin??


I am managed on 1, 325 mg aspirin daily for APS, 1 clonozapam 1 mg. 2 x day,(for stuttering and right hand tremor received via stroke about 10 yr ago) 72 hr. Fentanyl patch, Vicodin and medical marijuana (as neccesary for pain) current trial of CQ10 to lessen muscle and bone pain. 1 Toprol XL 25 mg for recent high blood pressure. Oh, and exercise -45 min on treadmill at 3.5 mph with arms and lift daily. Thanks. xxx Canary


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