Headaches

[nicolebarks]

I was diagnosed with APS about a year ago and I am on just a aspirin regimen and I take plaquenil. For the last week I have had constant headaches and can't seem to do anything to help. No other symptoms. Is there anything my GP can prescribe me to help? I have an appoint ment with my hematologist next month Sony can't ask him until then. Thanks

[Salty]

Aspirin didn't work for my severe daily migraines, but they resolved in one day on lovenox. I then tried clopidigrel which also worked for awhile, but I have since had to switch back to lovenox.

[Mommaleda]

I'm sorry to hear you are in pain. I would ask your GP to test your INR levels and make sure you are above at least 2.0. I was on aspirin 325mg for 10years until recently. My hemo found my levels were off. Keep us updated and keep at those doctors.

Xx

Leda

[Manofmendip]

Dear Nicole

I suffered from migraines and many other symptoms, which lead to me being diagnosed with APS.

It sounds to me as if aspirin is not sufficient for you, as it wasn't for me. I went to see Prof Hughes, privately, and he tried Plavix, which didn't improve my symptoms then he tried me on Fragmin, which did work, as did Warfarin, which I moved onto from Fragmin. At Prof Hughes advice I kept my INR at about 4.0. This worked for many years but I started to get 'funny turns' and Prof Hughes believes these to be mini TIAs. He has agreed to me going back on Fragmin and stopping Warfarin. After about a month on Fragmin my 'funny turns' stopped. I also take a 20mg dose of Amitriptyline as a migraine preventative and this has work very well on my headaches.

Best wishes and good luck.

Dave

[nicolebarks in reply to Manofmendip]

Thank you! I appreciate all your recommendations! I'll keep everyone updated.

[CanaryDiamond10]

I did a trial on Plaquenil in an effort to bring down muscle/bone pain. It had no effect on muscle/bone pain for me. However, it did necessitate an appointment every six months with an opthalmologist to screeen for color blindness and diminished sight. The Plaquenel itself was very expensive even with drug insurance. The whole circle made no common sense to me and since I could see no benefit reaped after 6 months, I ceased the drug and am again managing on aspirin, Fentanyl 72 hour patch, Vicodin and medical marijuana as necessary for pain and, probably most importantly, an exercise regimen. I am no Jane Fonda, but I make myself do it because it is the most effective thing I have found for pain reduction. But I don't like it one bit until it is over. Then remarkably there is great reduction in pain.

If plaquenil is the only new thing added since your headaches have increased, I'd ask if perhaps your trial isn't effective for your case. So sorry about your headaches. I know how debilitating they can get. Sometimes they are so intense for me that they block out everything but an anoying BUZZZZZ. I can see people's mouth's move and watch their expressions but it seems that BUZZ is so loud and over powering that it freezes me in my tracks until it decides to subside in its own good time for no reason we can discover. Those headaches were diagnosed as APS being responsible. They continue.

It could also be progression of APS for you and have nothing to do with Plaquenil. I originally had very good outcome with Amitriptyline. It is a seizure preventative, sleep inducer and worked wonders on reducing the pain of my headaches. I was just prescribed way too many pills for multiple diagnoses by multiple doctors and to me it was a duplicate drug I decided to eliminate. If I can achieve bearable results on less medicine, I will choose to every time.

But if you are being solely managed on aspirin it may be just the thing for you. You might ask your doctor for a trial of amytriptilyne. Hope that answers your question and is of some help.

[nicolebarks in reply to CanaryDiamond10]

Thank you do much for your insight. I am unfortunately the first patient with APS that my hematologist has ever had so I wonder sometimes how competent he his. I will definitely get on his case.

[Mommaleda]

I recommend printing off some of the literature on the basics of APS and it's symptoms-take these findings to your doctor. You can't make him read it but you can encourage him. I'd recommend seeking another doctor if he doesn't seem up for learning. I've been given some wonderful advice (from the ones on this sight) to not waste your time or energy on those that don't either want to educate themselves on APS or on the ones that refuse to believe your symptoms. It's real and that is a fact. APS does cause brain fog, dizziness, memory loss, fatigue, and so on. Plus remember each one has different symptoms. It's an auto immune disease.

Best of luck and hang in there!

Xx leda

[CanaryDiamond10]

apsfa.org This is the American APS Foundation, Inc. I reap so much benefit from the Brittish chat forum (this one) and I hope the US link (which leads to many other informational links) can be of help to you. It often helps if you send this written information in good time before your appointment. This gives your hematologist/gp/ and rheumatologist (all should get a copy) time for the nurse to research and appraise the MD. I hope this site is of much service to you as the Brittish one is to me. Also, the difference in the way medicine is handled in the two countries is quite a facinating operation (no punn intended).

Also, personally, I keep a journal that helps me keep my symptoms straight as well as my head (brain fog). It always aides greatly in the pain of trying to aswer the question of 'was the pain better or worse six months ago'. Take photos of rashes and date them. APS does progress. And the patient cannot exactly remember a year ago, but a photo and a diary helps greatly for accurate answers and for everyone - doctor and patient - to be on the same page. In the words of Kodak "A picture is worth 1,000 words," Never a truer advertisement slogan! All cases do not portray all symptoms. Many patients have multiple diagnoses, usually morphed autoimmune disease, confusing symptoms, and pain.

The more you educate yourself the better armed you will be because you are at war with disease. This disease means business! The people on this site are great providers of support for each other. And you'll always be believed!

I hope these suggestions are of help and that you are feeling better with each tid bit of information you learn. What you learn, you can teach others. Even if THEY had the MD.