Does anybody here have Hemiplegic migraines?
I am new here. Recently told that Hemiplegic migraine is possibly my problem?
Does anybody here have Hemiplegic migraines?
I am new here. Recently told that Hemiplegic migraine is possibly my problem?
Hi, neither of those, but there is a condition which sometimes wrongly gets diagnosed as MS or Hemiplegic Migraines, which is Hughes Syndrome/APS, an autoimmune condition, first described by Professor G Hughes over 30 years ago. Despite debates in The House of Lords and also awareness raising Neurologists, (not all of them), frequently miss or dismiss this condition. The Migraines typically do not respond to normal painkillers and often only to Aspirin or anticoagulation. Other family members will often have autoimmune diseases including Thyroid, or early heart attacks and or strokes and multiple miscarriages:
Symptoms: The typical low-grade symptoms of APS are:
headache and migraine
dizziness and balance difficulties
blotchy skin (livedo reticularis)
The common acute events caused by APS are:
thrombosis – DVTs
strokes and mini-strokes (TIAs - Transient Ischaemic Attacks)
pulmonary emboli (blood clots on the lung)
As APS is a blood disorder and blood flows throughout the entire body, nearly any organ can be affected. Consequently, the brain, eyes, ears, lungs, heart, kidneys, liver, bowel, skin, nails, bones and joints can potentially all be affected to varying degrees.
Remember - it is NOT necessary to have all the symptoms to be diagnosed with APS.
The blood tests are simple and cheap for a GP or consultant to do, and if any of this rings a bell come back to me and I will help you.
Thank you Mary.
I am in the US. I don't think my symptoms fit Hughes syndrome.
Numbness/ tingling right arm and hand and right foot and leg
Nerve pain same areas
Cramps and spasms same areas
Positive babinskI reflex
Do those sound like Hughes syndrome?
Actually particularly with the foot drop, I would look into B12 levels, Pernicious Anaemia, also with that goes the Babinski Reflex and headaches. It can be very neurological. Also frequently missed by doctors. Of course with many things there can be overlapping symptoms.
Thank you Mary.My B12 levels have been checked . High end of normal. I don't have headaches. That's why I don't think its Hemiplegic migraine.
I am certain it is neurological.
The other thing that it could be is Lyme Disease, often missed and that can also have foot drop and the reflex you mention! MaryF
Thanks again Mary.Lyme titer of blood and csf were negative. Neurologist seemed to think Hemiplegic migraine or multiple sclerosis. He said Hemiplegic migraine because I don't have o-bands in my spinal fluid.
thank goodness you have a really good doctor doing so many tests, just to rule it out, these are the ones for Hughes Syndrome, but they need to be done at the hospital lab as the samples taken are times sensitive:
Anticardiolipin antibodies (aCL)
Lupus anticoagulant (LA)
I have this alongside a few other things, best of luck. MaryF
B12 serum test is notoriously difficult to interpret and it is actually symptoms that count much more than the test scores (though the number of medics that are aware of this is woefully low).
Add in to the mix the possibility of being functionally B12 deficient because high levels of B12 in the blood can trigger responses that stop it getting through to cells where it is really needed and the situation is nigh on impossible.
Assuming that you haven't supplemented at all may be worth asking for homocysteine and MMA - two nasties from processes that cells use B12 in that build up if there isn't enough B12 to mediate recycling them into the useful starting points of the processes as they may help clarify if there is a functional deficiency going on.
Would also be useful to know exactly what your levels and the ranges were ...
On the other hand there is considerable amount of overlap with B12 deficiency and other conditions
I was having a lot of neurological episodes with left side weakness and foot drop. Couldn't walk. I went for about four years trying to find out what it was. I also had weird stomach/ digestive symptoms going on ( digestive shutdown). The Neurologist I saw thought I had MS. My mother in law has MS and I certainly walked like her but in between time I was normal. I didn't have MS
I have thyroid problems too. My Endocrinologist asked me about my symptoms one day and wrote down two things he said he thought they might be. One was Hemiplegic Migraine and the other was Gastroparesis. I went home and researched them. Hemiplegic migraine sounded just like my symptoms. It turns out that is what I had ( brought on by perimenopause as my only trigger is my cycle). I have never had the headache ( I consider myself lucky) and they think that after the aura I am having abdominal migraine or a gastric stasis.
I belong to some good Facebook groups and there are many people who do not get the headache.
I have no medical training but my daughter has similar problems along with hep.migraines has been diagnosed with Ataxia.There are a few different types .A Neurologist diagnosed it if that helps .
Thank you. I see a neurologist. He seems unsure as to a definite diagnosis. Does your daughter have headaches or just the strange symptoms?
I took my daughter to lots of different doctors when she was little and if it wasn't for the fact that she worked in A&E and has an attack at work where a neurologist see what was happening and he has been in USA and had cases there he was able to tell her what she has .Symptoms she describes as feeling drunk when not had any alcohol, legs giving way .wibbly wobbbly walk (granddaughters phase) all of the symptoms you discribe especially hear plays a major part .
.There is a website called Ataxia Uk but I think their is also Stated site .lotsof doctors in UK have never heard of it . S he also has asthma and when she has been addmitted to hospital and we say she also has Ataxia the doctors have to go on the website to see what we are talking about. Sorry for long post .
Thank you. I will definitely look at that site. I too have asthma. It does sound similar to my issues.
A neurologist isn't able to diagnose if it is auto immune. It is not a neurological condition and they were nice but useless to me. If it is auto immune it is caused by inflammation in the brain stem. That's what I was finally diagnosed with. Doesn't show up on scans or blood work particularly. I had all the same symptoms as you. It is a tricky area. There are many forms of vasculitis and a lot of them cause this type of migraine but it is almost always undiagnosed by general medics and even most specialists.
Who would I need to see,what type of specialist?
Are you uk based??
No. I am in the US
ok that is more difficult for me. I saw an immunologist for diagnosis and now see a specialist in vasculitis for my treatment in the uk. In the US I would contact the Vasculitis Foundation. Tell them about your symptoms and about the conversation you had with me. Ask where you might get a decent specialist who can diagnose you. It is such a difficult path believe me. I have had this disease a long time. And there are many different forms of vasculitis it is tricky to get a proper diagnosis.
If you let me know what part of the States you are in I can ask my helpline friends in the States and get back with a recommendation. x
I live in Arkansas. Thank you so much. I wonder if a rheumatologist would be of any help?
possibly a rheumy. I will put a call out on help group and ask where they were diagnosed.
Do you have any of the following symptoms....red flushing in the face....ulceration in mouth or genital area....ibs type symptoms?
oh or dry eyes or mouth?
Dry eyes definitely. I flush red in the face when the heat gets to me. No ulcers though. I am prone to acne but not mouth or genital ulcers
yes red flushing is symptomatic of Lupus but dry eyes if they are clinically dry can be a symptom of Sjogren's. This is where it gets tricky. So much overlap in symptoms. I get both but not terribly dry eyes.
I don't know if my dry eyes are clinically dry or not. I haven't ever been able to comfortably wear contact lenses because my eyes get too dry.
yes, that too can be significant. Sjogren's makes you unable to produce enough tears, saliva etc. So dry eyes dry mouth are key.
Really? Ophthalmologists have always dismissed it for years!
oh dear. I am always amazed to hear these things. But maybe not 'clinically' dry. I was tested for Sjogren's early on and the eyes were not clinically dry. Obviously I didn't have Sjogren's.
It would seem that I've a bit of being insistent to do!
yes god you have to be that. It took so long for me to get a diagnosis. It's a hard road really. But I will try to help. Look at the Vasculitis Foundation in America. I recommended someone else speak to them a while ago and they were very helpful to her telling her where to go for help in being diagnosed.
Thank you so much! I will certainly try that. A quick question.
Would vasculitis or autoimmune issues respond to steroids? I ask because I had a short course of them early on in this year that seemed to help but symptoms returned as soon as the prescription ended.
yes it is one of the standard treatments for it. That is why it would have helped. I have rarely taken them. I resist because of longer term side effects. I am on an immunosuppressant and also interferon alfa. It leaves me symptom free. Normal life for the past 3 years. Like being normal! Amazing. But yes. Even more 'evidence' there. Nearly everyone I know in help group is or has been on steroids.
These diseases cause the problems because they cause inflammation through the system. The steroids dampen down the inflammation. Inflammation does not show up on scans, mri whatever.
Thank you for the information. Why on earth don't doctors make these correlations? (Rhetorical question)
I believe my primary care and I will be having a conversation about referral and about this. They only let me have a few days of steroids. I have begged for more because they helped. Now perhaps I have an idea why.
yes it is stunning really. But we've all gone through this. For some reason it is never put together. That is the curious thing. The spread of symptoms baffles them.
And by the way, acne is also common. And acne on the back area is common. Everything has an explanation. Everything has a cause. xx
the effects of something like Lupus or Behcet's can impact on the entire central nervous system. This accounts for the spread of symptoms. Nerve pain or numbness, tingling sensations ... migraine, muscle pain.....balance issues... All kinds of things can follow. You may only have some symptoms you may have them all. It is a bit random how it affects different people.
Wow. That makes so much more sense than my neurologist!
I saw one neuro along the way who was great. But he has a special interest in auto immune disorders. God does he understand this. He is great. Dr Desmond Kidd. He works out of Royal Free hospital in Hampstead. He is fab.
That's great that you found a great one! I am sure he is a blessing to have on your side!
Doctors here are so commercialized that good ones are rare. My primary care is great as far as listening to me and treating symptoms but lacks expertise.
have a read of this. For Lupus substitute the word vasculitis really. Lupus and all forms of vasculitis can affect the CNS in this way.
Thank you again. Everything thing I have read that you have directed me towards makes me think that lupus/ vasculitis needs to be investigated farther to see if that is my problem. It certainly seems to fit the symptoms I have. My primary care dismissed autoimmune issues when my ANA was negative. Some of my reading seemed to say that sometimes that can be negative and still be an autoimmune problem like vasculitis. I am going to discuss this with her on Thursday at my next appointment and ask to be referred to a rheumatologist.
yes for sure. A lot of us are ANA negative. That's why it gets confusing...healthcare professionals often want to rely on that for diagnosis but there are other criteria.
I truly appreciate your input, magirose!
I am going to push for this to be investigated. It seems they are quick to dismiss things without fully examining possible causes.
You sound identical to me. 5 yrs on and I am still awaiting a diagnosis.. They just don't know. But they do think I have an umbrella of migraine variants, including Hemiplegic/ with no headache although in the last week I have started to get cluster migraine weird.
I also have been diagnosed with autoimmune desperately. You may never know. It is a frustrating journey. I have been sent to every top London hospital- top specialists and they are baffled. They can see scarring on my brain- wrong side for ms etc etc.
All I can advise is don't give up and do your own research- I am sure they have made me worse with all the medication and side effects, misdiagnosis.
I am trying all the natural remedies- going gluten free etc etc taking all the vitamins/ gentle yoga.
Although I am on an exercise ban!!
Sometimes you just have to take your own life in your own hands.
Whatever your migraine is you need to see an neurologist so they can prescribe something for you. Dont think it will go away migraines just dont. Seek help
Thanks. I see a neurologist. He has not prescribed anything. He offered botox and i declined. I don't have a headache! Just the strange symptoms listed above.
hi, I have this as part of auto immune disorder. I think that a range of auto immune conditions can cause this. I have Behcet's but also Lupus and other connective tissue disorders can cause this type of migraine syndrome. It is very disabling and very painful. I currently have treatment and symptoms have gone.
You really need to check inflammatory markers and ANA.
Thank you. My inflammatory markers are a little high not to the extreme that usually goes with rheumatoid arthritis and such . My ANA was negative. I've been tested for a lot of things but they haven't found anything except white spots on my white matter on MRI, elevated CRP and ESR slightly elevated, and a couple of bone spurs in my neck not considered significant by radiology.
yes right that sounds like Lupus. I know it may not seem like much. I only ever have slightly raised CRP and ESR and sometimes not at all raised. This is still consistent with auto immune disease. And white speckling usually significant in Lupus. I am betting that is what you have. We have a lot of overlap in symptoms with Lupus and Behcet's.
I can send you something on the headache but am at work at the moment. But if you look up neurological complications in Lupus you may find some stuff in internet about it. Lupus is uncommon and this sort of migraine syndrome not suffered by all Lupus sufferers but it does happen.
It is reversible. You can get treatment. So even if it is that you can get help to get it under control. x
Eva1981 hemiplegic migraines are quite common and increasing in numbers. I found most hemiplegic migraineurs so far in the UK but there are many in the US. It is represented by partial body paralysis meaning one side of your body (not necessarily the whole body) loses sensitivity. It can be just half your face or half you face and arm on the same side. "Hemi" stands for half so it is "half your body." I have some migraineurs who have half whole body paralysis. It is very easy to prevent. If you have the paralysis as I described, you can join my migraine group if you don't mind no privacy (FB is not exactly private but this isn;t either so I suppose it is OK with you): facebook.com/groups/2191824... the service I provide there is free. I currently have over 1400 members--they keep on coming and going. So far over 4000 have recovered (most left to go back to work).
If you prefer privacy, I have a consulting option as well, in which case contact me here: stantonmigraineprotocol.com/
Thanks. I am not sure that I have Hemiplegic migraines. I feel like that was something a neurologist threw at me so he could offer botox and make more money! I have symptoms that don't fit Hemiplegic migraines. I have NO HEADACHE! I have spasticity and balance issues and heat intolerance. I have paresthesia right arm hand and lower leg and foot. I posted this because of my skepticism. I wanted to see if anyone had my symptoms that definitely has Hemiplegic migraines.
I suffer from hemaplegic migraines with NO HEADACHE.
Mine was caused by trauma in 2010. I was assaulted and stabbed in my abdomen 3 times. Before this happened to me i suffered from migraines in my head normally all my life.
Since then i have not had migraines in my head but they do attack the trauma sight.
A trauma can be anything physical or mental and can easily be related to stress. Stress is a traumatic time.
Have you any indicaters as to when it started.is it in connection to a specific time ?
I do get jitters in my legs and arms too without the hemiplegia kicking in..or the migraine.
i could see how it could relate phsically to MS as i have wondered that my self.
Good luck anyway.maybe something i have just said could help x
Thank you Becky.
Things really got bad in February of this year. No trauma in many years, either physical or mental. My life was actually on an even keel and looking great. Minimal stress,good job,great relationship.
Do your hemiplegic migraines cause symptoms that do not go away except when taking steroids? I ask because the only thing that has made symptoms stop for me is prednisone.
Hi eva...yes i suffer from water retention all over my body which sometimes I have to have prednisalone to get it to pass.
@becky444 ,thank you for answering my questions.
I guess it's possible that hemiplegic migraines can exist without a headache.
I have an appointment for a second opinion neurologist in December.
Is there anything that makes your hemiplegic migraines symptoms go away?
I've been unable to walk normally since June due to foot drop. I also have cognitive issues, can't recall words/mix up words a lot of times. Prior to all of this, I had a gift with words . Now I am lucky if I make sense when I speak.
The radiology report on my neck MRI states demyelinating disease as likely diagnosis. Do you have lesions on your spine? I ask because I have 3 lesions on my neck.
I wonder if maybe I have more than 1 issue going on.
Thank you for reading and responding!
Makes sense Eva1981 . Question: are you taking any medicines? Some can cause those side effects. Topamax, Gabapentin, Pregabalin are all voltage gated calcium channel blockers (there are more but these are the most common) and then can cause the kind of condition you have. Some heart meds like Propranolol also can and all SSRIs can. If you are on any of these do not stop but head to the doctor (a different doctor! One that is not trying to sell you anything.. sheesh..) to help you get off and perhaps replace with a different medicine. <3
I am taking lyrica and baclofen. My symptoms began long before those were prescribed. I take them to manage my symptoms. I've tried going without meds and cannot handle my symptoms that way. When this began I was on no meds of any sort!
Yeah Eva1981 Lyrica is a voltage gates calcium channel blocker and causes those side effects you mentioned. To come off of these meds you need serous changes in diet and lifestyle--I don;t know what yours is now. In my migraine group I have hundreds who took the same and after they changed their lifestyle and diet, could come off those meds with no problem and no migraines of any kind--with or without pain.
Also, at drugs.com's website there is a drug interaction checker. I looked at there is an interaction:
Interactions between your selected drugs
Applies to: baclofen, Lyrica (pregabalin)
Using baclofen together with pregabalin may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you.
Thanks Migraine doctor. I do not have a migraine! I take the meds to be able to tolerate my symptoms. The symptoms began when I was not taking anything.
I do not have problems coming off of the meds. I tried not taking them for 2 weeks and was unable to work because of the numbness, nerve pain,muscle spasms, and sleep deprivation caused by all of the above. The meds have been a godsend for me. I am aware of the interaction between lyrica and baclofen. I only take them together at night before going to bed. Some people may have bad results with meds but I have not had that problem with the ones that i take. I have gone cold turkey off of all of my meds without issue. I take them on an as needed basis,not scheduled dosing!
I appreciate your offer and input. If I could fix my problems with diet and exercise I wouldn't have any problems! I've gone vegan and exercise daily within my abilities.
My wife has hemiplaegic migraines. They look like she is having a stroke. The left side of her face droops and she gets close to unconscious. Her worst two attacks, late at night, she passed out completely and stopped breathing for up to a minute, but recovered.
They are now under control with Propanolol, a beta-blocker, and she also takes vitamin D.
I am now waiting on a referral appointment with both a rheumatologist and neurologist.
My primary care doesn't believe that I have hemiplegic migraines. Prior neurologist had stated he intended to diagnose Ms then changed it because of no o-bands in csf. Primary care believes I do have ms and is willing to refer to rheumatologist to be absolutely certain that there is not an autoimmune issue as well.
I am currently back on prednisone and my symptoms are letting up somewhat,though not totally gone.
I don't care what the diagnosis is,just want to know what the cause is! So more tests in my future I am sure!
Just read the rest of this thread. Interesting! Another condition I considered when I was looking was Hashimotos Encephalopathy. Another name for it is Steroid responsive encephalopathy. Steroids are the treatment. Sounds similar. Just thought I'd let you know. I guess it's good to research all avenues.
Best of luck