I'm on about day 5 of a very annoying headache just above my left eye. It started as a "pinch", as if someone was squeezing a bit of my brain and its turned into a "wiggle", as if someone just has their finger swirling about in there.
Other than that, everything is fine- hope everyone is well and enjoying the, er, summer?
Tan
x
Gosh... the shortest rant ever... hope that has gone away... and yes a good summer with the usual hiccups we all have - Mary F x
Hi Tannyah
Sorry to hear that you are not well.
I can sympothis with you has I used to get those sort of pain until I ended up with the Medication to numb the pain.
I still get those from time to time so I know what you are going through.
Best wishes and get well soon
Thanks 
I usually get away with a nurofen or two (tension headache / migraine tablets work the best) but today all it's done is move it to above the right eye!
Your bio says that you are not medicated? I suggest that you al least take a daily baby aspirin.
It's something I've considered, and spoken with my consultant about, but she says not yet, that in the long term it may cause more harm than good. I see her again in a month or so, I'll broach the subject again.
Thanks.
Standard minimum treatment for APS is aspirin. Be your own advocate.
You would have no problem taking aspirin for a aches and pains, would you?
No, but long term aspirin is very different isn't it?
I think because I've not suffered a "major clotting incident" as yet, she's concerned that long term aspirin will cause side effects worse than effects the condition will present to me. It's a bit confusing for her I suppose that I have some symptoms and confirmed antibody blood tests but no clots and she doesn't know if there will be.
I'm happy with her choices as she is very open and clear with me, I'll cope on the odd nurofen and rant for now then chat with her about it when I see her.
Obviously it's up to you, but in the US it is standard practice for both men and woman to take an aspirin after the age of 40. i.e., it will not hurt to be safe as if you have APS your blood sticky and just waiting to clot on you and possibly causing a heart event of stroke. No doctor in his or her right mind would allow APS to go untreated even for a brief time.
Aspirin is not without it's side effect for long term use. Tinninitis (ringing in ear) and even hearing loss are two that I know of. I'm on a 325 mg./day for APS, for varying types of headaches, currently one very similar to Tannyah's. Taking an aspirin every once in a while is one thing, but taking it daily as a prophilactic is quite another. If I had a choice I would put off ANY medication as long as I could. I've been in a debate with my rheumatologist for over a year about going to something stronger than aspirin like Warfarin or Heprin. I told her when I had no other choice I would, but that I would like to keep my meds at a minimum. Your liver has to process that all out of your system which is another long term consideration. There was a time I was on over 30 different medications until I was so medicated I almost wasn't. I walked into my GP'S office and asked to be weaned off everything except pain and comfort and what would enable me to communicate. (Received severe stutter and other permanent damage via stroke in 1998. So, I may be a little pill shy.) Now, I actually feel better than I did then. At least I can think straight and make an intelligent decision, well a decision anyway. Back then I was a crippled zombie in a wheel chair who may as well have been locked in an ivory tower away from anything and everything. It's taken quite a while, but I'm out of a wheelchair (almost all the time). I do depend on my cane quite a bit for balance and to ease back pain if I have to walk a bit. But for the mostpart, I get along pretty well compared to some cases I have read here. You should be your own advocate, but not your own doctor. Jim, are you a paramedic/nurse/doctor/medical field experience? Or a self taught patient whom has managed to learn quite a bit? It's just that you seemed to know about statins and a little bit of a lot of things. I just wondered.
Tannyah, I'm sorry your headache has not disappeared, but I sure admire your conciseness. That was a short rant! I wish I had that talent. Feel better.
Smiles and warm wishes.
Canary
Thanks It's not too bad- just a bit annoying. Sounds like you've had a rough time, but made your situation work for you. That's good news x
Myself and my daughter take 75 mg of aspirin one in the morning and one in the evening, and always on a full stomach! on advise of St Thomas' and London Bridge. Mary F x
There is much truth to that. I often wonder if I would have had a stroke at all if they had put together the diagnosis of APS in time for me to take medication. I'm positive I can document it from birth. One thing after the other as a child, adolescent, teen, young woman, countless miscarriages, 3 years of fertility tests, Much trouble with menses. TIAs. A family history of stroke. A 60 pack-year habit (thats 2 pks a day for 30 yrs.) menthol cigarettes. Many autoimmune diseases. And still, I was only diagnosed in 2010/11 with APS. I beleive I just chose a great rheumatologist this time. But how much of all of it could have been avoided if they had the APS dx? Would they have performed all the invasive procedures they did on me if they had known I had it then? It's a tough choice. Sure, I would have taken the aspirin then. I take the aspirin now. But stepping up to the "big time thinners" is just not necessary at the moment for me. When it becomes necessary, well, will I really have a choice?
Before I was diagnosed with APS I was sent to a dermatologist here in France as I had Livedo.....straight away he sent me with a letter to GP saying start me on aspirin as I had adisease......... ignorance is bliss eh? I was laughing because of his french accent telling me 'you have a disease' little did I know the seriousness of it!!!! but my GP started me on aspirin and said I must never forget it and to take it at the same time everyday! I have never had a clot but I did feel very very ill before I started the aspirin! standard practice here in France! and for operations I am changed onto heperin a week before and how ever long they think for afterwards.....was on heperin 3 months after my knee replacement plus aspirin! thank fully all went well!!!
Hi when I was seen at St Thomas's I was told that Asprin can cause more harm than good. it seems hard to believe but thats what the Consultant told me,
I don't understand it, but they are the best people to know, I am on Warfarin now, following having had a Heart attack even when I was on Asprin.
What i would do is make sure you don't become dehydrated, Drink plenty of water I think the recomended amount is 2 litres good luck,
Karen xx
Sorry I should have added for people who have not had a clotting event, I was asking about my son wether he should start taking 75mgs Asprin she said no and as above more harm than good even when flying, also not to have testing to see if he has APS
but medical advise is what we should be taking from the experts but everone is different
Karen
I will wake up properly before I write anything on here again !
Here in Limoges there is a hospital....most big towns have them....chu .....centre hospitalier universitaire. They are like NHS hospitals but also do training for doctors to be! the Limoges one has a rare diseases part...which is where I was seen.....they have a certificate for outstanding understanding of Autoimmune diseases....I know I would not have got the same treatment in the UK as I got here. I was kept in for a week and every test possible was done....epilepsy.mri. head scans, body scans, urine collection, copious blood tests, eye tests....the list goes on!.a whole weeks worth! and on two seperate occassions! they still told me aspirin and I for one would not miss it due to the difference in how I feel now to how I was before I took it! I have bloods monitored every month and anything else I need in between! I just ask!!! I have liver and kidneys tested and scanned been to a cardiologist, have a rheumotologist I just ring when I need to!! and I will be taking their advice! What is the harm aspirin causes?? I know of the stomach issues...I take a stomach protector daily here! Surely if you test positive for APS and show positive signs eg livedo etc it is worth taking aspirin???
I think my consultant thinks it's a bit of an unknown. I have the antibodies and many symptoms, but no clots. She doesn't know whether everyone who has the antibodies and the symptoms will clot and she feels that 40 odd years of taking aspirin may cause worse problems, so she only wants to medicate when flying or if I was to get pregnant. She does tons of blood tests and has sent me for scans so has a good picture of me I think.
I'm going to talk to her soon so I'll ask again, but I'm wary of going against her advice as, well, she knows best (after my mam- she knows the actual best obviously)
I do understand! I just know , personally, how much better I feel taking 75mgs aspirin a day and have not had headaches etc since started taking! Like you, I trust the people involved with me here in France, I just guess each is different in thoughts! I dont know if there is an easy answer if there has been no clotting events. I have to say, I felt even better when I was on Heperin for 3 months but my Dr will not give it to me!!! says Aspirin is enough.....and although I still have livedo it is not to the extent I did have it!!!! and again, I personally feel happier taking aspirin.....I would worry so much if a did not, knowing how I felt before I did! x
So, your blood is thicker than is should be and at an increased risk of clotting and your consultant just brushes it off? What's wrong with her? I guess you can always wait to have a stroke and then tell her "I told you so". That is, if after, the stroke you are still able to communicate with her.
Get a new doctor!
All I can say is that you are foolish not to take your diagnosis as needing URGENT treatment.
Yes, all my family have had hospital treatment in France.W get seen straight away,get all the tests, good food, etc. Only problem is if the doctor doesn't speak English. He told me my son had (casse le dos) broken his back, when in fact he had meningitis which has affected him badly.
Oh the beauty of direct translation!!!!! Fortunately all my doctors have and do speak english even though I speak enough french to understand them!! My GP is married to and english person. The surgeon whom did my knee op is married to an Australian...my physio is married to and english girl and my rheumy just speaks good english!! so I have been lucky.....and yes there is no waiting here...you are seen usually within the week of requesting an appointment with a specialist! I am so lucky!!!
I get a horrible electrical charge through the right side top of my head from time to time, but no one knows why and it hasn't been followed up. I have had strokes.
I felt a lot of unexplanable oddities and sensations in my head after my stroke. I had the sensation of it "falling asleep" a lot. Like when your arm or leg "falls asleep" you get a little tingle? Only my whole head tingled. Actually, it's difficult to say which was the actual disease, dx of CNS vasculitis, or aftermath of the stroke or perhaps a precurser to another stroke.I was not yet diagnosed with APS.
My stroke left me with a severe stutter, left side weakness, right side face sag, left eye drop, severe right hand tremmor, peripheral eye sight loss, and balance problems. That's all I can remember. The CNS provided extreme headaches, body aches; it got to the point I could not separate the pain. One year after the stroke I felt as though my entire body was enveloped in pain and the very slightest touch, even a wind, would cause excruciating pain. Your instinct is to stand perfectly still so as not to set anything off, but of course the cure is to move. They diagnosed that as fibromyalgia. It is the main reason for my Fentanyl patch, 100 mic/72 hr patch. That combined with Vicodin and medical marijuana keeps my pain managed. I really try to stay away from the Vicodin although they encourage me to take 2 twice a day whether I have pain or not. They want to ward it off before it starts. But it's a wicked drug and I have known too many doctors whom have found themselves addicted to it. I don't take it unless pain has really got me. I certianly won't take it daily. If I did I would have to be on a stool softener for days and days. I will say, before I had that duralgesic, I had no mobility and was in a wheelchair. Once they put that patch on, within a week I graduated to a cane and it got better. Not gone - but certainly manageable. I'm also lucky because for the stutter I take 2 mg of clonozapam and it takes care of the hand as well. So the big deficits are hidden if I am medicated. The little things I don't worry about because there is nothing to be done about them. I still get headaches like you are speaking of in an electrical charge type pain. Makes my eyes water. I get a whole different kind of headache where I hear a loud buzzzz and the pain is so intense I can't concentrate at all. If you can manage to concentrate, try a relaxing bath and in the bath think of relaxing things. Divert your mind from the pain if you can. Sometimes it wins/sometimes you win. It's always worth a try to me. At least it takes up an hour or so. Hope it works for you even if it's just once..
You can expect some odd sensations. My neurologist acually told me to expect them, but that they should become less frequent. They never really have and I had my main stroke in 1998.
Smiles, hugs and prayers for better days.
Canary
Just a small question Canary, just wondered why you are worried of being addicted to Vicodin? have you ever tried coming of the Fentanyl patches????? I was on them for years...I also have fibro.........God it was the worst experience of my life coming off them...even though I reduced the patches slowly and was cutting the 12 ones in half at the end.....I vowed never again!!!! unfortunately here I am back on them.....only at the lowest dose for back pain mainly.....I am hoping only for a short while as I will never forget the withdraw symptoms I had!!!!!!! boy was that bad and was I ill yet i was on tramadol for 9 months and codeine and never suffered when I stopped them!!
I originally took the Fentanyl patches wrong. Yes, I can read, but at that time my understanding skills were debateable. I was first prescribed 10 years ago? I think.
In a hospital setting, the day you have an operation is day 0. So I counted the day I put the patch on as day 0. It isn't. They consider it day 1, so every day 3 there was no medicine left and I would go through night sweats, cramping legs, in inability to be still, frankly I would want to just jump out of my skin. I complained to each of my doctors at EVERY visit. I showed them the booklett I kept track of the patch days in. But not a single doctor caught it for OVER A YEAR! You're point is their point exactly. I am already addicted to Fentanyl and am aware it is 80 times stronger than morphine. But the alternative (as my doctors remind me), is unacceptable. I was existing not living, due to pain. This patch made the pain managable so that I could begin first with aqua therapy, then home exercise program. So to me Vicodin is just adding more to my already maximum dose of opiates. This is not without cost. Someday, maybe this year - maybe in 5 years, if I'm still here, this dosage may not be enough. I'll save the Vicodin for then. Right now, I can have a bit of medical marijuana and distract my thinking away from pain and onto a pain fighter such as exercise or light yoga specifically designed for my weakness in my body. I won't go into it's benefits, as I feel it is a patient's personal choice like taking any other medication. My doctors are all aware and some even think if it keeps me exercising it's worth it, if it makes me eat, it's worth it, if it helps me to sleep, it's worth it, if it prevents depression, it is worth it. If it keeps me functional, it is worth it. My children actually bought me a vapor device so that I don't have to smoke it. (I quit smoking cigarettes 15 years ago and wouldn't take the chance of starting again) So this machine turns the THC into a water vapor which is inhaled and does no harm to the lungs. Works for me. It keeps my blood pressure down. But, like Vicodin, I don't use it every day. I guess I kind of have steps to deal with pain. First exercise, and if that doesn't work then a little medical marijuana or a cupcake made with marijuana (there's tons of goodies made with medical marijuana) and that might be enough for me to redirect my attention away from pain and avoid step 3, which would be Vicodin. Then I am useless. Can't drive. Will probably fall asleep and it's a valuable day wasted. My doctors remind me that before the Fentanyl, I was crippled physically, mentally and spiritually. I NEVER want to go back to that place. It was entire persons ago. This is NOW and I am grateful for what I have. I have no money, but no debt. I have a family who loves me. I have the same neighborhood friends I had at 10 years old, only they are all over the world now. We all keep in touch quite regularly and have for all these years. We were hippies. Flower children of the 60's and we still are at heart I suppose. Pacifists most of us. Anyway, I saw what addiction can do during those years. Then I saw it again as a young woman working as executive assistant to the president of a teaching hospital and privy to all information. I was flabergasted when I discovered how frequently the disciplined mind of a doctor fell into the trap of drugs. It scared the daylights out of me. I held a lot of different positions in that hospital and learned from all of them. I'm just afraid of not being able to appreciate my life. Of not even caring what my existence brings. I want to appreciate every single second. I want to be as important to my future grandchildren as my mother was to my children. I want to be cognizant when I have that opportunity. It's a strategy call, I guess. I'm afraid of Vicodin and I'm afraid I'll be one of those people who depend on it one day. And what will they recommend when Vicodin doesn't work? I go up another step to an even more potent drug. I know it probably won't work. What wil be, will be. But I can't help but try to delay the inevitable.
Thanks for the warning, Cami. I know I only had a little taste of withdrawl. My doctors say I will never come off Fentanyl. I feel so well sometimes I think I can, but experience has taught me not to fool with that drug.
Smiles, hugs and a kiss on each cheek.
Canary
You sound so together....good for you! and at least you have found some relief from the pain!!!! That one I do understand! being back on Fentanyl myself now....just dreading the day I come off again!!! In the UK we do not have medicinal marijuana....shame that it is not allowed!!! as it does sound as if it helps! I am glad you have found what works for you and it has given you a chance to enjoy life again and thought about your long term pain management. In my younger life I saw alot of addiction and a couple of friends die from overdose....I was never in their league!!! I was to frightened of becoming an addict....I had a good job etc and did not want to risk all that I had....at least they taught me that! but such wasted young life of some really nice intelligent people who had everything to live for! Here in France they are wary of giving more than 2 weeks patches in one go as people sell them!!! and has been known for people to lick them to get the high!!! so they are strictly controlled.....if only they knew how many I had in my stash where I have been started and stopped!! Ha Ha......some are even out of use by date now!!!!
Unfortunately when a drug makes us feel well we do feel we could stop....I have been on Lyrica (another drug I seem to start and stop) for my recent knee op.....the nerve damage feels good and I think shall I stop...it will be one drug less....but I know it is to early and the severe disabling pain will be back! so hey ho I shall continue until........ who knows!xxx
My cousin in France, Jean-Michele Etcheber, was exactly one of the statistics you are speaking of. It was particuarly odd because we could have been twins and it was odd to see your doppleganger waiting for you in the train station. He was 2 years older than I. It was the late 70;s maybe. We received a letter that he had died after I returned. The family knew it was an overdose of cocaine but ( you know the French). no one would say that out loud. He was a representative in the Senat. He had a magnificant apartment. He was one of those personalities that could keep you laughing for hours. He was an up and comer! Spoke 10 lanuages fluently!. But drugs got him. They wondered if it wasn't a deliberate thing, but in the end Jean-Michele had to say yes.. It seemed such a sin to waste such a gifted person. It seemed such a shame that he thought so little of his own contributions. I was almost angry with him as I had just met him and I grew very fond of him very quickly. My own clown cousin. We have no family in the States except my immediate family. They have all passed on now and we have my husband's side.
I never dabbled in much other than pot in the 60's. No one I knew did. We sure saw a lot of people indulge in more than that but it wasn't our cup of tea for the same reason as you. We knew we had too much to lose. We appreciated how lucky we were while we were going through it.. We had a group of 9 guys and 4 girls who stuck together like glue throughout the decades, past the marriages, and into Wow, how time does fly.
If it all stopped right here, I'd have to say I am one luck lady. I'd be grateful as heck to have had this life and I'd assure myself that if I ever got another chance, I'd do it better than I did this time. This time I got the best of America and the best of France. You know, they've been alies in freedom since the beginning of America.
Fentanyl is a 3 signature drug here as well. I get only 10 patches at a time and you have to go to the hospital and pick it up from the MD's hand. They won't even give it to a nurse. It has to be filled in 72 hours or its automatically void. It's a pain in the wahzoo! But, given the alternative I'll do it.
Listen Cami, don't take those outdated Fentanyls. Flush them or something. You don't need that stuff hanging around, especially with your opinion of it. You don't want to be taken advantage of and have the stuff stolen from you and out on the street because then, then you could actually hurt someone. Who knows? Not a lot of testing on outdated drugs has been done, but I seem to remember the word PHSYCOSIS associated with what they have. Dump that useless stuff. And you should continue what they have prescribed you till its gone. Boy, are you naughty patient! There are reasons behind what doctors tell you to do. Honest.
And you know what else? I'm not so together. I'm almost never together! I have all I can do to stay a little on the wacky side. I wouldnt want to give you a wrong impression. I just get through pain day by day by day. Just like the next person. I know whatever kind of day I have, it will either pass or I ought to be enjoying it. Maybe that's the magic attitude that gets me through.
Good luck, Cami
A hug and kiss on each cheek. (that's a nice habit they have, huh?)
Canary
Me too. I call them pressure headaches. I'm taking tramadol bit it not helping too much.
Hughes Syndrome + Moringa powder = ???
Extreme Fatigue with APS?
Another trip to the Emergency room gone bad...
Just seen Professor Cruz with a result I think ?
Help!!!!
