Just a quick question, and I pray someone somewhere can answer?? I'm still waiting for my appointment to come through to see the specialist ref: getting an official diagnosis, however it's my gut feeling that I do have Hughes!!!
Anyway my question........ Are palpitations a common symptom of Hughes or not, (I guess they could be totally unrelated), lately I've been getting more and more, they are particularly scary at night when I'm just about to nod off, I can feel the "thump" of an extra heartbeat or the skipping of a beat, (not sure which one), as this happens I suddenly feel really dizzy and have to take a deep breath, it happens just at the point I know I'm about to go to sleep!!! It's incredibly frustrating as it's keeping me awake and I'm also a little scared, I have other symptoms of Hughes but am curious as to whether anyone else has experienced the same or similar!!! I'd be very grateful if anyone could answer!!! Also should I keep a note of all symptoms etc so I can present these to the specialist???
Thanks in advance xx
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Kay722
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I get a missing beat quite frequently & feel it more at night as I feel whe your relaxed or it's quite you notice it more, it can be scary but quite common.
Your palpitations may not be related but mention it anyway....always best.
Hi there, it is definitely something to be checked out, but please do not lie and worry about it, which will make it worse, that appointment is on it's way... and it is possible to have thryoid issues, which do not always get picked up. I failed the NHS tests and have it quite significantly.. and it is part of the trio of diseases that patients with APS often have, which Professor Hughes himself, frequently mentions: APS, Sjogrens and Thyroid issues. Some thyroid patients show up a result and for some reason others do not... some only show up after extended problems with gall bladder and a whole host of other things., only to find out later that thyroid was an added factor in there., Worth a look, as this can cause night time palpitations. Mary F x
Many many thanks for all answers to my question, I wasn't aware that people with Hughes could also have gallbladder problems, about 6yrs ago I was crippled with unexplained upper abdominal pain I had many tests for gallstones etc but nothing showed up, I also had stomach problems I was told I probably just had an irratable gallbladder, was given pethidine for the pain which I took everyday for 3yrs also a cocktail of other medications none of which really worked and no proper diagnosis!! I eventually decided to come off all medication as it wasn't working, and the problem settled down gradually although lately it's creeping back I probably have 2/3 painful episodes per month!!! I just know myself that there is something wrong with my gallbladder and just stay clear of foods that trigger an attack!!! The more I learn about Hughes the more I'm convinced I've had this for a very long time!! I do think I've could have thyroid issues as I'm tired to the point of exhaustion, I'm overweight (not massively) but have tried every diet imaginable, I don't overeat either, have had 5 miscarriages, muscle & joint pain, headaches, I wake with a hungover feeling yet rarely drink alcohol..... The list is endless really!!! Anyway thank you once again! I don't post on here all the time but I am constantly checking in for the latest info etc..... It's been a god-send and a real eye opener, thankyou!! X
Here it Dr Chris Steel talking on ITV This morning about the complexity of thyroid issues and how the tests do not always show things up! youtube.com/watch?v=lyc8N_m...
Thanks for putting that up Mary, that was good. I have been tested for underactive thyroid regularly for about 25 years and always come back within range. How I hate that term. But I still have half of those symptoms.
Hi yes I too have had gall bladder removed about 3 years ago &still have pains there now!! I have an appointment to talk to a surgeon about it & see what he thinks?I have recently been told it may be S.O.D?
There has been a lot of diffent disorders etc that we all seem to get?! Maybe just a coincidence?!!
Take a look at my post to do with 'symptoms olympics!' It makes interesting reading!
I believe every Hughes/APL patient should keep a daily journal in which you gauge your pain on a scale of 1-10 as well as your emotional ups and downs on a scale of 1-10. I believe you should note every separate symptom you have during your day, what you did about it and to what extent it helped or did not. At the back of your journal keep a log of computer pathways that pertain to your particular case so you can refer to them and/or print them to educate the doctors you will meet on your journey. This serves as a tremendous aid to a common group of symptoms called "foggy brain" meaning forgetfulness, confusion, trouble word finding, memory in general. Before you go to your MD appointments of any kind, write your questions down in the journal before you go. Leave room for answers. This is important; do not be intimidated by the doctor. Interrupt him in midsentence if necessary and say, "excuse me, I'm very symptomatic today, could you pick it up from ???? because that's where I lost you. His most important task in being a doctor is to be sure his patient comprehends what is happening to her body. Write the answer down right there in the office. If you are asked, "when did this new swelling start and to what degree?" you will be able to refer to your journal for an exact time and what could have exacerbated it. You don't have to guess. Keep track of your weight. Medications really put weight on. Most of all, when YOU have a day when you say, just how long has this been going on and will it ever stop? (For me this is what I say for migrains) you have a reference to go to to see just how long it lasted last time. There are times you will want to rant and rave and scream and be a meanie and a real stinker because you're so tired of just being sick. Put it all in your journal. It's better than a shot of Southern Comfort over ice on a hot day.My journal has kept my sanity, my privacy and my secrets and most importantly my accuracy. And if, God forbid, any of my future relatives end up in the "cluster" they will be able to read my words and know they are not crazy, lazy or stupid. I would certainly want my daughter to know she is not alone.
I hope this helps you help yourself. Exercise is the best weapon I have found for pain; particularly aquatherapy with exercises devised by a psysiologist (a doctor who specializes in the musculoskeletal system and/or sports medicine" specifically for your case. The other fantastic medicine I have found to combat unrelenting pain is humor. Old movies, your best friend, any 6 year old is usually a barrel of monkeys. Make yourself happy. Make yourself laugh till you cry. It increases endorphines and actually reduces pain with them.
Hiya yes i was getting palpitations n i also have hughes syndrome, i had many tests done. They say its usualy an extra beat when you get it. I agree it is very scarey and i found it happend more when i was relaxing, ive now been put on propranolol n ive found that this really helps and i dnt get so many.
yes I get palpatations some milder than others, some stop me in my tracks and make me slightly light headed. Ive had this since I was a teenager (long before my diagnosis).I get it more when i feel anxious about something or when resting after a busy/stressful day. Always something to get checked out though if you are concerned. I used to feel bad going to docs, like I was wasting there time but have come to realize that no matter how small something may seem you should still, for peace of mind, go see them. Good luck!
I was getting them increasingly up until I had my stroke just after last Christmas. I then had them off and on over the last 10 months as my INR has dipped and swayed. Test after test reveals nothing but I'm sure its related to how thick the blood is and I'm equally sure the drs think I'm imagining it.
Hi, i have APS and Sleepapnea. It sounds like when I don't use my cpap. The dizzyness and the deep breath and palpations and bumps at the point you fall a sleep. It sounds like youre having an aroussel at that moment because your body gets in an alarm mode because of very low oxygen. i Maybe it can help you to sleep not flat but in a more upright, sitting position, so your airway can't collapse. Sorry for my bad english. Your problem can have other causes also, I think it's important to tell your doctor about it!
CanaryDiamond's journal is a very good idea. I've been keeping one for years - though not quite as extensively as CD's! I record when I woke up, my weight at the beginning and end of each day (perhaps a tad obsessive!), what I eat, if I sleep in the afternoon (which I usually try to do), the meds I'm taking, and how I feel.
Usually forget to take it with me to appointments, mind! Hahahaha.
I've also just created an A4 binder with all my ongoing medical results, letters, etc., divided into sections for each consultant. And I shall take that with me to each appointment from now on (brain fog permitting!) - because none of the b*****rs seem to ever communicate with each other!
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I have an appointment to talk to a surgeon about it & see what he thinks?I have recently been told it may be S.O.D? 
Positive Test Results
One year one
The sticky blood Explained relaunch
Confused
Fluctuations...
