Sticky Blood-Hughes Syndrome Support
8,096 members8,335 posts

How many here suffer dizziness?

Just wondering how many here suffer dizziness and if so to what extent and have you found anything that has helped?

Probably one of my first symptoms of APLS about 15 years before I was diagnosed was the dizziness along with tripping over and suddenly falling down.

This past year it has returned again. Mostly when I turn over in bed or go to get out of bed or if I tilt my head backwards. I have neck problems so thought it might be tied in with that so have been having osteo and physio on my neck and shoulders but the dizziness remains.

I'm now thinking that it is probably the APLS and I'm stuck with it.

15 Replies

same problems for me dizziness and lightheadedness, very difficult to look up to look at a plane, constantly falling. none of the doctors even tried to control it. I did find a rheumatologist who did have me try lorazepam 1mg and diazepam 2mg. it has helped a great deal but has not stopped it completely, these two meds have helped a great deal and I have not fallen in 3 months


Did you find your APS-doctor? Is the Rheumatologist an APS-specialist? Did you try Stemetil or Prochlorperazine suggested by APsnotFab? Did you find some Betahistine?

Best wishes from Kerstin


I must comment on my above answer;

APsnotFab did not suggest Stemetil or Prochlorperazine (another name for it) but she was givet it by her GP against her dizziness. She answered you on your post regarding dizziness some time ago.

Sorry too late to write now!



did try betahistine but it did very little to help


I am often lightheaded. I sometimes walk lightly touching walls to steady myself. I prefer pushing a grocery cart or stroller as it seems to help. As I often get severe migraines, I wonder if the dizzies are a continuation of them.


That is an interesting point. I get migraines too so it may be linked.


I take Topiramate to prevent migraines but still don't trust my balance and often have unexpected moments of dizziness - often at the top of stairs but also when sat not doing anything. I have not really taken enough note re whether this gets better when INR is higher but it might be the case. Someone on here has said in the past it can be due to blood being too sludgy around parts of hearing blood supply that also looks after balance.


In my case I don't think it related to INR as its the same if I'm high or low. Unless of course I need to be higher than 3.8


When I am flaring I get the feeling as though I am on a ferry, and I lose my balance,usually managing to steady myself with a wall,settee or whatever is available


I had severe dizziness, betahistine has really worked for me, no longer dizzy unless I dont look where I am going eg car passenger, the ENT Doctor who I was seen by years ago said eyes are important when you are dizzy

I am on medication for epilepsy as well as Warfarin.

Recently about ? 1 year ago I was prescribed hydroxychloroquine since then I haven't fallen it had made such a diffence to my balance.

What does the Doctor say who deals with your neck as you probably already know that can also make you dizzy, perhaps they can help

I hope you manage to get it better


I have a leftsided Otolite-damage from a TIA or mini-stroke. I have been investigated by several Specialists. The balance is connected with the ear and also eye. As we have too thick blood (sludgy) we have to be well anticoagulated so the blood can pass through the very very tiny bloodvessels.

I think some of us have thicker blood than others and different symptoms need more anticoagulation.

I am glad that I can selftest as I have observed that the INR fluctuates from day to day in periods. It may have to do with new drugs, infections, stress, K-vitamin-reduction or increase.

Those who go to the clinic for tests have to follow the doctors advice to reduce or increase the warfarin.

I Think the dizziness has to do with how well anticoagulated we are and how stable we can maintain the INR. That is very difficult sometimes.

Dave has often spoken of a doctor, Peter Sauvandra (hope the right spelling), that is a Specialist of these symptoms.

I hope Dave can comment on the doctors name and title!

Best wishes from Kerstin in Stockholm


Comment to the above: With "Dave" I mean Manofmendip.



My collegue administrator Manofmendip (Dave) has told me that the doctor he has spoken of is Dr Peter Savundra at the Portland Hospital. He is an expert of ballance-issues.



Since starting on Rivaroxaban and 100mg aspirin my dizzyiness has pretty much gone. I have a walk buddy and she got used to me clutching her at random times as double vision and dizzyness occurred. I'm happy to be driving again and walking on my own at times. I'm taking Plaquenil 400mg/daily but I feel it hasn't helped with the joint pains after 8 weeks so I'm considering dropping it if after the 12 weeks its supposed to take to kick in. I have gained a shedload of weight while on it so that can be colouring my thoughts ;)

I wish there was a magic pill that took care of all the symptoms but as you read here no one thing works for all and a great doctor is a great help.


Some of my first APS symptoms (way before I was diagnosed) was extreme to mild vertigo and migraine, migraine, migraine. I learned to keep a symptom diary at that time and discovered that symptoms were always worse around the time of my period. NOW I know that estrogen in particular has caused my most serious problems and that coincides with the estrogen surges that always accompanied my menstrual period. After coagulation, I always had crazy up and down INR levels during this time.

Things that helped the dizziness:

1) Mecclizine for the vertigo- helped sometimes more than others.

2) "Popping" my ears regularly - at least once or twice daily, more if symptomatic ( Pinch your nose shut with your fingers, close your mouth tightly and blow until ears pop) Sounds crazy, but really did seem to clear the tiny passages of the ear. Still do this regularly, 30 years later!

3) If both ears didn't pop, keep trying during the day for the double pop.

4) HYDRATE! This was always worse when I hadn't been drinking enough water.

5) Do NOT sleep on the same side every night. I usually didn't make it all the way through the night, but at least started out on the opposite side or on my back.

Fortunately, the dizziness isn't as bad for me now. Lately it is really affecting my eyes. Double vision, blurriness, tearing, burning, then...migraine, migraine, migraine. Doesn't seem to matter what my INR is and the ophthalmologist believes I am "Just Fine" and was not interested in the least bit what APS is. So frustrating to wait 6 months for the referral, 4 months for the appointment, then get such an arrogant and uncaring so-called professional. Thanks in advance for any advice you all may have to assist with the vision issues. Thank goodness my brother told me to close one eye when the double vision hits or I would be afraid to drive.

Good Luck and All My Best for a Happy Symptom Free Holiday!!


You may also like...