Sorry it’s been a long time since I’ve been able to post . I’ve been finding that my symptoms have been getting more frequent and new ones in the past few months .
I went to my doctor today after getting vertigo type incidents over the weekend .i have been put back on topomax four weeks ago after having very painful pins and needles in my left hand and feet that was painful and really bad at night . I’m waiting to see a rheumatologist. So I’m hoping to finally get linked in with a clinic for future care .
I’m sorry for the long post . I m just wondering if anyone else is having these vertigo type symptoms and nerve pain . The other thing is that print is at first blurry and comes into focus ..
I guess I’m just worried as my symptoms seem to be getting more prevelant and making day to day life harder with my kids ( and I’m recently separated ) and my daughter says jokingly that I tell her things ‘on loop ‘ most days .. I don’t imagine this is is exclusive to me .. but it would be good to hear similar experiences from others here and what they found helped .. and I’m sorry I’m not a frequent poster .. it’s hard to get time but I really appreciate having a community to chat too so thank you all 😊
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Linda80OL
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I guess first question would be is you INR in range? Having ruled that out is it in a 'proper' range for you APS? I used to have this frequently and was scared to go for a walk by myself and had to clutch onto friend/husband and wait for it to pass. Hasn't happened in a long while but talking 'on a loop' can be me at various times! I also have Raynaud's and had to have a finger amputated and still have nerve as well as phantom pain and it can strike any time. The pins and needles sensation sounds more like carpal tunnel.
I suppose you know that anticoagulation, for instance Warfarin, at a rahter high and steady INR will usually stop them. I guess you have already tried that without no relieve.
I do not have vertigo as my episodes have started beginning with EXTREME dizziness. When it strikes there is no warning and I have about 3/5 seconds to get on furniture or floor because I WILL fall. Then one part of body usually right leg looses almost if not all of its ability to be used. I also have what I call a slow focus time when reading I have look at words and make a conscience decision to focus my eyes. It doesn’t just happen anymore there is a pause between seeing the words and focusing enough to actually read it. And I also have Nero probs shooting pains, needles, vibrations, as well as lotnof joint pain and bone pain etc.. ih, also when I have an episode my eyes get really blurry and An altered state of mind. My mind isn’t really with me for a few minutes. I’m sorry these problems and sorry I can’t help u with these things but I can say I feel u. I have been there and I live there. You are not alone!
I wish u the best of luck. If u get any answers from ur dr. Plz let me know!
Wow, I have those exact same problems, the extreme dizziness comes on and if I don't sit down, my body falls down, right leg turns into jelly and stops working. I fell a few weeks ago getting out of cab, knocked down my neighbors mailbox, had bruises and gashes all over torso & breasts, got road burn under my breasts, I was in some pain after that fall. Fell last year and broke a rib on my left side. I'm glad I found this forum/site.
Yes, yes, yes I have all of the symptoms you are talking of. The stress of your recent separation will not have helped your condition. I have multiple conditions Aps being one of them.
The vertigo is dreadful to live with and at it's worst makes me feel very apprehensive of going out alone, I do not feel safe to do so. For many years I noticed I had problems with my focus just the same as you speak of, I am now under ophthalmology for my focus and sjogrens. As for the nerve pain it is relatively common with autoimmune diseases and Aps and well documented.
You have a lot going on in your life at this present time and the strain is taking it's toll on your health. As you say, it is a hard time and your already strained system has an extra burden to cope with.
You didn't say what meds you take, if warfarin keep an eye on you INR. I am on clopidogrel and aspirin but still have the most awful symptoms. Try and get as much support as you can whilst you go through this wretched time..........try not to neglect your health. Xx
P.s Did you manage to find a consultant who specialises in Aps ?
As a matter of fact I do not know what anticoagulation drug you use today. We have too sticky blood so the anticoagulation drug is very very important to keep the blood out of clots etc. I have had a lot of Vertigo also (before Warfarin) and they were microemboli and had to be properly thinned.
If you are on Warfarin try to selftest if possible and also keep the INR rather high and also steady there.
If you are Lupus Anticoagulant positive it can be more difficult to keep the INR in place but with only the other two antibodies (or one of them) positive it could be easy to selftest.
I do understand that you have difficult times now. My divorce also happened together with the start of my APS.
Sounds like you are ver tired and under a lot of stress too? This effects our bloods.
A lot of us suffer with your symptoms, for me its when my blood is not thin enough. I've had to up my medications during this cold spell, the cold makes my blood thicker!
I had vertigo so bad that I was unable to get out of bed, I couldn't even lay on the sofa I felt so sick and the world was spinning out of control. My Inr was raised to 4 and it ceased immediately, my Inr is now 4.5.
You have had some good replies already but I will add to them. Firstly the INR is crucial if you are on Warfarin. If not your GP needs to reassess you and refer you to one of our recommended specialists. Also you need to thoroughly look at your Thyroid, beyond the TSH that most do, which we feel is not fit for purpose. Some of us test privately and do a whole panel of thyroid tests. It is also crucial to test your Vitamin D, B12 and D, if any of these are out of kilter you will have all sorts of problems. I take a whole host of supplements including those listed above, also magnesium etc. I will also add that I used to have terrible pins and needles in my hands which woke me up, however it turned out to be carpel tunnel syndrome which cleared up once I treated my thyroid properly. MaryF
Just a couple of things to add, I had severe dizziness and have been prescribed Betahistine, it is ment to be for Ménière's disease which I haven't got.
It has no side effects if very unusual now but if I feel dizzy and if I do it quick enough I pinch my nose like trying to clear ears after a flight it stops the dizziness in its tracts.
I also have epilepsy I think caused by damage before being on anticoagulants
Thank you for that. I think my pharmacist mentioned that as something that’s prescribed to help vertigo but couldn’t remember the name of it after I left the pharmacy . Will ask my GP.. thank you ..
Wow .. thank you all for some very helpful posts .. I have no consultant at the moment and have been off medication for quite a while .. I wasn’t under the care of two neurologists who seemed to think the nerve blockers for the the headaches and memory issues .. my GP said my inr was 2.4 I believe at my last bloods .. honestly family issues ( oldest child ongoing mental health / hospital stays ) has made everything else take a back seat . Just on 75mg now of topamax and waiting to rheumatologist as neurologist wasn’t much help and haemotologist I seen said it wasn’t his speciality and I seemed okay 🙄..
Anyway have another letter from emergency doctor so am ringing to follow up and try get in to see someone ASAP as I can walk straight with this and my memory is getting worse .
Thank you all for the kind words and good information and advice . It’s hard to know what to do and not just think am o loosing the plot with more symptoms..
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My diagnosis
Possible Epilepsy symptoms?
Extreme Tiredness
APS Symptoms
