My 'Funny Turns'

Some of you will already know that I have been getting a lot of 'funny turns' initially since early 2010, with a recurrance of 'classical' migraines' treated successfully with Amitriptyline but the 'funny turns' returned in August 2011 and have continued since. These turns start suddenly and I feel that I've been pushed, or turned or the floor bounces for a second or two. I saw my neurologist last year and he felt that they were an atypical migraine. I saw Prof Hughes, again, in Feb 2012 and he felt that they were more likely to be vertebrobasilor TIAs. I have been doing a trial, agreed with Prof Hughes, of having 15,000IU of Fragmin per day and stopping Warfarin. I had felt that this was slowly reducing the number of the 'funny turns' but I had a very bad one yesterday 28th May 2012 and I am still being affected by it today; dull headache, shaky legs and tingling fingers.

I saw a new neurologist, recently, and a further MRI & CT scan were done. The MRI showned no changes to the provious two scans, which had shown small areas of ischemic change, described by one radiologist as a small infarct but the new neurologist did not agree. He has suggested that I try Sodium Valproate instead of Amitriptyline but I have read the two pages of side effects and no way am I going to take Sodium Valproate.

The strange thing is that when I am not having a 'funny turn' I am able to function reasonably normally, indeed on Saturday in did 50 mile bike ride and felt good.

Any thoughts anyone?

Best wishes.

Dave

34 Replies

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  • Hi there, this is very interesting to me, and obviously annoying for you, as my daughter, 15 recent diagnosis from St T's of definite SLE Lupus and probably Hughes syndrome, she was having up to 12 funny turns a day, now down to 1 - 3, but hers slightly different. I think to read up and weigh up the drug implications as you do is a good idea. We are on plaquenil and aspirin which has made a huge difference. However she was flat out in the hall this morning with a big one, and did not go to school. We have two hospitals monitoring it. As far as I know scans showed nothing. Mary F x

  • Hi Mary

    It is weird isn't it. I don't have SLE so have never been given Plaquenil but I am now on Fragmin & 75mg Aspirin, as well as 2.5mg Ramipril, for blood pressure, and 80mg Fluvastatin, prolonged release.

    Best wishes and good luck.

    Dave

  • Hi Mary, do you mean seizures when you say "funny turns"? It must be really worrying.

    Has anyone suggested doing an EEG or that your daughter needs something like phenytoin or sodium valproate? Not sure what the trend is nowadays.

    Hope you get sorted, or closer to being sorted anyway.

  • Hi this is a really old post, she has been treated, and remains on medication for her Hughes Syndrome/APS and her Systemic Lupus, and is now 19. MaryF

  • so sorry Mary. Apologies to everyonr less too. Sometimes i look at the feeds at the side and it takes me to old posts.

  • no problem at all, I did not mind answering you at all.... it still gets us all talking... MaryF

  • Hi Dave so sorry to hear you are still recovering from a nasty turn - i wander if the heat could have been an issue it has been so muggy too, i definately am stuggling if no breeze is going - i am guessing as with warfarin the degree of hydration of the body could affect the effectiveness of fragin? and doing the bike ride, which i take my hat of to you that's a fab distance well done you - but perhaps your body thought it was too much and complained after the event - hope you are feeling a bit better this evening kathy x

  • Hi Dave, I hope you get to the bottom of what 'your turns' are......I do get something very similar & I just presumed it was the Meniers I was diagnosed with that causes it? My body also shakes & trembles, I too have had scans & nothing has yet shown up on them?

    I take prochlorperazine & it seems to help.....

    but it is worth getting more oppinions & advice of docs etc.

    Wow with the bike ride......congrats & what an achievement!

    Hope you are improving now :)

  • Hi Kathy & Suzpawz

    Thanks for your well wishes.

    I had wondered about Meniers too and I will talk to my GP about that.

    I went to my Cranial Osteopath, this afternoon, he is wonderful and I felt better after I'd had his treatment. However, just after I got home I had a very big reaction: dizzy, weak, tingling arm/fingers and a strong sense of hunger; all very like a hypo even though I had a good lunch. This is kind of easing off now and I hope a good sleep will mean the morning dawns with me feeling better. I've had tests for diabetes & thyroid function, both negative for any problems.

    The bike ride was good and I was riding on experience - I used to race bikes until 1991 - as I hadn't ridden for two weeks so wasn't as fit as I would like. I did stop after 17miles for lunch in a lovely village pub that I like going too. I felt good the next day, too, with no real aches in my legs. Last year I did about 6 rides of between 50 & 95 miles and I want to do similar this year. I had a triple coronary by-pass surgery in 2007 too. So I was very taken aback by being hit with a 'funny turn' yesterday morning, out of the blue; fridges don't move when you go to put milk back in them!

    We have a lot to put up with being APS positive and family members don't always understand; they get fed up with us being ill as much as we do.

    Lots of love and best wishes.

    Dave

  • Ok your the first that I've heard say anything about hunger.. First off, I'm not a little lady by any means.. In the past several months I'm having dizzy, even drunken states, with migraines,etc. hunger for protein to be exact.

    Any thoughts?

    xx to all

  • Hi Dave

    This is ballpark but look up Mal de Debarquement Syndrome

    en.wikipedia.org/wiki/Mal_d...

    Now Ive never heard of this coming on after long bike rides but the brains a funny thing and there could be versions.......

    I suffered from this after 10 long haul flights in 8 days. I still get the bobbing feeling sometimes although since my stroke affected my balance everything blurs into everything else now lol!!

    The other thing is that the hot weather pushes up blood pressure and we need a lot more hydration. Although you may be used to doing the rides I wonder if you are used to the heat and perhaps need more hydration.

    I had a funny turn myself yesterday, not sure what it was but felt very unwell. Today Im better but seem to have a bit of a rash so dont know what that means.

    Have you thought about Topiramate for the Migraines. I use it for another type of chronic daily headache which has worked very well. If you want the name of my Prof of Neurology who specialises in Headaches (brilliant guy), please PM me.

    Hope you are feeling better soon.

  • Thank you Lynn.

    Best wishes

    Dave

  • Hi Dave.

    Sorry to hear about your 'turns'. When I was reading your post I thought this sounds familiar. For the last 18 months I have what I have called 'events' and am currently being review by the neuro team. I have odd episodes of feeling the world around me is very unstable with feeling like one or both feet are sinking through the floor as if it was liquid. Very difficult to describe in words but a feeling that you just know is not right and that something has 'gone off' even if the feelings only last briefly.

    I had a head MRI the end of last year but it didn't show anything. I am having another one in June. I wonder if it is possible to have neural stuff in the brain going on without it showing on MRI?

    I hope you get the cycling in that you want to this year Dave.

    Best

  • Thanks Travelnut

    I think you are right that things neural go on without showing up on MRI scans.

    Both my neurologists consider stress is a big factor in my 'funny turns'. I have business stresses but also home life stresses; my wife is a very moody and often childish person but I am stuck in my marriage, trapped financially as I cannot afford a mortgage to buy her out of her share in the house.

    Cycling seems to relax me and I have never had a 'funny turn' during cycling.

    Best wishes.

  • I too have these feeling and also the same as Dave. I am on Fragmin as well and have been doing better. My MRI's are unchanged and it is unexplainable as well.

  • Hi Dave,

    Sorry to hear of your stresses - work & home - i can relate to both the home one in my previous marriage but obviously opposite way round ;-) but with other issues i left in the end it was amicable and financially i paid everything for my daughter then i didnt pursue maintenance as it was my decision to leave i just worked extra but was in good health then - but speaking up for men they defo can get the worst deal in a break up i can understand why the bike rides mean so much to you to have that freedom & doing something for yourself....

    lack of a supportive partner must be hard esp whilst you are suffering at present but you have all of us here to hopefully support you and each other ;-)

    i had funny turns not related to APS then both lasting 6 weeks but followed a virus i was seen at smh ent dept they have a specialised team and it helped me and too have had a several whiplashes to my neck - the first back in 1987 that i would go dizzy with looking up feel very sick - my turns i had related to neck position on both occasions then turning in bed the whole room would move so fast it was very scary the team at smh did movements to trigger off the event then i had to do exercises to help prevent bringing it on working with this was a nightmare esp any computer work or sudden movement..

    although stress is a major factor it sounds to me there is probably a mechanical trigger to these turns - and damage not seen on current imaging... on the national day the research was looking into developing improved imaging to see potential damage being caused - we cant all be wrong - i was told it was anxiety with one of my tia attacks as went globally weak felt like i could easily fall had pounding heart warmth feeling go through my back down my left arm amongst other odd feelings that is hard to describe....

    Hope today is proving a better day keep up the fight you sound very strong and highly motivated to get to the bottom of it ... re wife say deafness is a major issue get bilateral hearing aids turn off so you just dont hear her ;-) kathy

  • Thank you Kathy.

    I agree about not everything showing up on MRIs. The neurologist that I saw in Bath does not believe in seronegative APS and kept asking me if I was sure that I had tested positive for APS. I told him yes I've been positive in 10 tests! I don't think he believes that APS is a major disease at all and I think he thinks that we are all anxiety freaks.

    Best wishes.

    Dave

  • In the months before my Dx I had events which sound similar to your turns. They got worse and worse until finally people outside my body could also see these events which docs said were TIAs. My turns went away with warfarin and have not, as yet, returned.

    But for the past 10 years I have had periodic hip, balance and gait issues. I had no idea my issues were connected with APLS as I have been what I thought was symptom free for over 10 years. But time after time I found myself amazed into stammering excuses as I tried to explain to my physical therapist that lack of motivation or conviction were not the reasons why I was not maintaining a consistent gait improvement. On some days my gait was better, on others it was pretty bad. And I could not fix it! Not would not but Could not.

    Then I found this site, made the 2+2 connection with APS and got my heme to agree to a higher INR. My gait is better, but after 50 years of a bad walk it's going to take some time yet to fix it consistently. But in order to fix this I must have good communication among my spine, cerabellum, cerebrum and pelvic muscles. Some APS " Thing" is interrupting this nervous system dialogue.

    And no this "Thing" is not detectable by current imaging technologies. But I know it's real and I know I'm not hysterical. The correlation of ability to control my gait and an INR of 2.8 or above is too consistent to be chance.

    But its not just the INR. I can share that my "Thing" is worse when I am wearing heavy shoes (? Why? got me,). And when it is hot. When it is hot I am more likely to have hypoglycemia moments and such moments robs me of my ability to properly manage my gait.

    So for the best possible gait day I should have a thin INR, minimalist shoes an outside temp of under 70 and a low carb diet.

    My gait is better after targeted exercises-- IMMEDIATELY better as if getting the proper muscles to fire in isolation helps them fire appropriately when I am walking.

    Assuming APS is driving my "Thing" as well as your Turns I hope my random observations here will help you piece together a coping strategy.

    Gina

    My balance is improving and I am becoming more comfortable riding a bike. I hope to visit of my state's rail trails soon.

    Good luck, and enjoy your cycling!

  • Thanks Gina

    So many of us on here seem to have similar 'funny turns' and when I mentioned this to my neurologist that was when he said that APS was blamed for so many things that it could not be true and that he didn't believe in seronegative APS and kept asking me about my positive tests. I told him that I've tested positive for APS more than 10 times. I wonder sometimes if these guys need to have APS to understand what we go through and that even with theraputic INR levels or adequate Heparin disage we can still feel dreadful. I had a major clot in my right hip in 2006 even with an INR around 4.0.

    If we didn't have each other on here then we would all be so lonely and scared. What a great community we have on here.

    Best wishes.

    Dave

  • Try actually having seronegative APS too when you butt up against a doc who does not believe in either seronegative APS or APS!!

    I had one a few weeks ago who actually told me to stop taking my heparin! When I asked why he told me Prof Hughes was wrong!! I then asked what possible explanation there could be for my Stroke, he could not answer.....

    As you say, thank god for this community so we can at least remind ourselves we are not alone! x

  • Amen, brother!

  • It seems almost like we need to set up our own APS Health Service with 'friendly and understanding Drs'.

    Why, when we have enough to cope with actually having this illness do we then have to cope with disbeliving and insensitive Drs too. There are wonderful Drs out there, of course, but if you get a non-beliver then boy you are in trouble.

    Best wishes to everyone.

    Dave

  • As a resident of the state which was home of the Hatfields, of the H and McCoy Feud fame, I totally get how mental agitation can cause disease. We humans have such a proclivity for running issues into" black and white only land." But docs prefer the easiest, less intimidating and most flattering ( to themselves) explanations. So, , if a disease looks complicated, as most autoimmune diseases are, it's easier to say the patient is exhibiting physical manifestations of emotional problems.

    Anybody ever read Susan Sontag 's "Illness As Metaphor?" I read it decades ago, in college, but I recall she spoke of the real harm which can be done by using "illness as metaphor." Sontag refers to TB and cancer, but her warnings are certainly appropriate to us.

    I wonder if it's still in print? I think I'll take a virtual journey over to Amazon. . .

    Gina

  • Thanks Gina.

    I don't know the book but I will try to look it out.

    Dave

  • I checked on Amazon and yes, it is still in print. In the 80s Sontag wrote an addendum (?) footnote (?) companion piece (?) on AIDS and metaphor.

    I should re read this.

    Tina

  • Thank you Gina.

    Best wishes.

    Dave

  • Hi Dave... I just want to say Hang in there my friend.

    I understand how difficult it is to have family stressors, work stressors and APS. Some days I wonder why just ONE thing can't work out... I guess we all ask that question too.

    Being in an unhealthy relationship really can be taxing on your soul and your health. When I was, I was much sicker and I dont think it was coincidence. That stress adds to what we already deal with.

    By the way...I had said earlier that my doctor thought Fragmin brought on my hepatitis but now they aren't sure about that either. I dont always feel well following my injections though...very upset stomach and a full feeling in my abdomen. Going back to see him on the 12th for more tests...so time will tell.

    I wish you the best Dave.

    Beverly

  • Thanks Beverly

    Good luck with your tests.

    I thought that Fragmin was helping a bit but my 'turn' on Monday was a bad one and I've not felt right since.

    Best wishes.

    Dave

  • Hi Dave,

    Sorry so are not feeling so good. Your description exactly fits with my description of my 'funny turns'. I had a few last year that really scared me - felt like my blood sugar and dropped through the floor, I thought I was going to have a heart attack. Now I have less dramatic ones - where the peripheral vision spins and I feel unsteady on my feet.

    I have had Idiopathic Intercranial Hypertension now for 6 years - its too much cerebal fluid around the brain. It cannot be seen on any scans and the only diagnosis is from a lumber puncture (you can also see mine on retinal scans as papillodema on my optic nerves). Mine started with horrendous headaches, but now thats its controlled (through acetazolomide a diruetic) I'm left with these funny turns. When I started to tell my neurologist about them he described them back to me perfectly and said they were migraines without headache, which can be caused my chronic high cerbal pressure and prescribed topamax. Might be worth googling it??

    Take care

    Helen x

  • Hi Everyone

    Well, I'm still on fragmin and off Warfarin and things were getting better. However, this last week or so I've been getting multiple 'funny turns' again just as bad, if not worse, than when I was on Warfarin.

    I saw Prof Hughes again a couple of weeks ago and at that time I was in a good period with few turns. He said he thought I was doing well and to stay on the fragmin and to see him again in march next year.

    I'm now at a loss as to what to do next, as the situation for me has become as bad as ever!

    I'm going to write to him and ask him what he suggests.

    Best wishes to all on here, we each have our horror stories to tell, don't we?

    Dave

  • Oh Dear Dave! :-( Could you not give him a call? Im sure he wont mind and whist he still has you in his memory.

    Perhaps its the weather turning colder as I know Im struggling a bit at the moment too. Today has been awful for some reason. :-(

    Perhaps we should have some place where we all go and commiserate together...at least we can all appreciate each other and it wont feel like we are moaning to the other half (who wont notice anyway)!!

  • I have written to prof Hughes, today, and emailed it to his secretary, so I hope he replies.

    Yes, I agreee. My wife gets fed up with me being ill and I think it has certainly affected our marriage for the worse.

    Perhaps APS patitents should only be in relationships with other APS patients.

    Best wishes.

    Dave

  • Hi Dave, so what your new neurologist is saying is that it's not vascular but neurological then and the "infarcts" are "nothings" ? Did the location of the "infarcts" fit with Prof Hughes vertebro basilar artery events, ie were they posterior? I worked in acute stroke for a lot of years and I think it would be very unusual, and perhaps not even possible, to have so many TIAs all with very similar symptoms, and have them go on over such a long period of time.

    The hunger thing might be a migraine aura which seem to come in many shapes and forms.

    A little strange actually, because I had my first ever occular migraine and first migraine for maybe 15 years 2 weeks ago. A few niggles of what felt like I might be getting a migraine since then, but just fizzled out and no more funny visual things. I do often at the moment get really strong cravings for cheese and meat.

    Do you also have funny noises in your ears? A bit like tinnitus, but more crinkly, like someone scrunching plastic? That's a new one for me that only started last week. It changes when I move my head , which I try not to do becasue it knocks me off balance.

    Hope the fridge is behaving. Maybe try some obedience classes.

  • Sorrt mMary just told me thta it's a very old ppst. Apolges

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