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Stroke Like Symtoms(symptoms), Intermittent Loss of speech & Balanc...
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Stroke Like Symtoms(symptoms), Intermittent Loss of speech & Balance

About 1 1/2 yrs. ago, I started experiencing, at the age of 49, severe vertigo, visual problems, nausea and left sided weakness. I was tested for everything imaginable, no diagnosis and yet I went from being physically fit and a chef, to bedridden and sleeping 20 hours a day, because of all the gravol I had to take to get some general relief of my symptoms.  

This past February, still holed up in the house, I experienced the normal 'weakness' on my left side but it progressed to total paralysis, inability to speak and inability to swallow.  My husband gave me an aspirin when he realized I couldn't respond to him and took me to the hospital 5 min. from our home.  I was treated as a stroke patient and sent to the downtown Toronto Stroke Centre.  Unfortunately, by the time I arrive by ambulance, (about 3 hrs. later), it was too late to administer the 'stroke buster' shot that was planned.  After about 4 hours, slowly, I began to regain feeling in my left fingers and forearm.  I felt a burning/pins & needles sensation and within that time frame, my speech started coming back, though slurry and jumbled.  I ended up being sent back to my original hospital when in the ambulance, the whole episode started again.  It was like that, back and forth, speaking, drooling, paralysis until the next day around noon.  Again, every test was done (MRI, CT scan), 3 times, looking for the cause.

I am now much better and not needing nearly the amount of gravol that I used to but I cannot drive because I have lost my depth perception, ability to judge speed or distance, and am clumsy.  I walked 5 blocks a few days ago for the first time in 1 1/2 yrs., without staggering and bumping into things beside me.   I am still not able to go into busy stores or large box stores because within about 10 - 15 minutes, I start to develop the vision problems, balance problems and become sick to my stomach.  I can't tell you how this has affected my life.  I have a loving supportive family and good friends, though I don't see people often.  Watching people talk, their hands move, or trying to have a conversation in a large group sets the whole thing off.  I really don't understand any of this.

I am 50 1/2.  I am going through menopause, had some problem with depression after my kids in my thirties, and agreed after thorough testing that perhaps a neuropsychiatrist was an option.  My doctor felt perhaps it is emotionally based.  I agreed because I am willing to expore every avenue.  The doctor I am seeing is wonderful.  My husband comes with me to my sessions which are too far for me to get to on my own, waits for me, consults with the neuro doc and we sit in together and talk about things.  I truly am a happy person at this time in my life.  My girls are grown and successful, my relationship is great and I am basically free of burdens.  What the heck is going on??

Is there anyone out there who has experienced such symptoms?  Right now, I need to go and get gravol, typing this letter has made me sick.  I have taken medicine for migraine but I am still seeing only spots of my screen and have pain in my temples, forehead, base of my neck and general woozy feeling.  When I am like this I would definitely not go out in public.  I would either be down on the ground after losing my balance completely or my field of vision would be moving and making me throw up. I am still suffering from loss of words, memory failure, jumbled words, and stuttering.

Help!
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Avatar_dr_f_tn
Hi,

I do understand how difficult it was for you.But you have been strong and your family has been very supportive.You are still lucky and blessed.

With regards to your symptoms, were your doctors able to give you a definite diagnosis ?

Were any cardiac problems ruled out?

Were your coagulation factor levels ( Prothrombin, APTT and fibrinogen ) evaluated?

Were your thyroid and parathyroid hormones assessed?

In the absence of any significant findings in the CT scan and MRI, you may be having basilar or vestibular migraines.These type of migraines may be difficult to  differentiate from a transient ischemic attack which is a cerebrovascular disorder. Basilar or vestibular migraines have been associated with vascular spasms at the base of the brain which may explain the reversible symptoms of slurring of speech, visual problems and weakness in the extremities.

Close supervision is necessary and I do understand that the attacks may be very disconcerting and almost debilitating. At this point, I can not think of any futher evaluation that may be needed.Continue with the medications,physical therapy and counselling as these are beneficial.

Also you may be open to other forms of alternative medical therapy like acupuncture and reiki (japanese hand or palm healing) which has been used by several physicians to complement medical therapy.
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451975_tn?1372332199
Yes, all of those tests were done. The neurologist attending also said there was no other tests  or help he could offer me.  Why did they not suggest anti-migraine drugs to me??  I appreciate your advice and will look into the options you suggested.  Terina
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Avatar_dr_f_tn
Hi,

Yes discuss the possibility of a vestibular or basilar migraine as a diagnosis in your case.This is of course given that you had a thorough assessment and other causes like a transient ischemic attack and other cerebrovascular disorders have been ruled out.

It is important to note that basilar, complex,ophthalmic or vestibular migraines are only given as a diagnosis when other conditions including blood and cardiac disorders have been ruled out.Discuss this with your physician and keep us posted regarding his/her advice.
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Avatar_n_tn
Hi,
I was searching the net to see if I could find information on my moms problem when I found this site. Some of your symptoms sound not unlike what my mom is experiencing at the moment. Since christmas my mom has been very ill. We found out that she has diverticulitis (inflamation (inflammation) of the colon) and was put on steroids and other medication for it. However, shortly after starting the medication she began to lose her speech and her balance was off. The doctors said it was due to the steroids and the effects would wear off as her dosage decreased. However, these symptoms ony got worse. She was taken off the steroids, admitted to hospital and had a series of tests, MRI, CT, ECO, blood tests, etc. All came back clear. Two months on and her condition is deteriorating. She can't drive because the spells where she loses her balance are so frequent - she basically loses control of her limbs and has to try hard to keep herself together in public. Her speech goes every time one of these ''spells'' occurs. It's like she's drunk and can't get the words out properly and she's slurring. We're from Ireland where neurologists are thin on the ground and seem to be making no headway in finding a cause or solution. It's affecting her mental well being, making her feel old and debilitated. She's a very youthful 54yr old lady, who up to now was always on the go, keeping busy. Now she can hardly leave the house as these moments of loss of speech and balance are so frequent, minutes apart in fact. Could it possibly be emotionally related?? My mom has had a lot of tragedy in her life and I'm her youngest child only married 6months. I wonder is she feeling a  void in her life now none of her children are at home coupled with the tragedies of the past coming back because she never had any counceling to deal with them at the time. I'm very concerned and really want to get to the bottom of this. If anyone can offer advise I'd greatly appreciated.
A worried daughter.
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Avatar_n_tn
I just went to the hospital on Easter with Stroke like symptoms and was treated as such.  I am 35 years old.  They did all the normal tests MRI, MRA, and tons of blood work.  Although the CT scan showed something that they thought may have been a mini stroke the other tests ruled it out and they diagnosed me with a silent or atypical migraine.  I had all symptoms of a stroke.  The numbness, tingling, drooping of the eyes and mouth on one side, no facial expressions and I could hardly talk.  It has been one week and my strength is still not back on my right side and and my speech is still very slurred.  It is very frustrating for me so I cant imagine what it is like for you.  
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451975_tn?1372332199
As I write this neecie73, I just had to pick up my granola & fruit that leap from my hand! This is not unusual for me. The speech problems are still there, when I speak on the phone, my regular words/conv., are only okay for about 10 min. and then I start to 'lose' it. I know you are scared for your mom but please explore the possible emotional connection in all of this. Ask her doctor for a referral to a Neuropsychiatrist who specializes in all aspects of brain function. They are trained to deal with migraine, depression, epilepsy, atypical neurological symptons and do not differentiate between the illnesses at all. Their job is to unravel the 'mess' in the brain, try to help the patient understand what may be contributing to their problem and also to tell them the almost forbidden rule with doctors, and that is, 'we just don't know what is going on here'. I have found a wonderful doctor and go for therapy every month or so. I don't know if you have insurance but see if her doctor has any recommendations. In the meantime, tell you mom to hang on, I've found even 1/2 a gravol every four or five hours really helps the dizziness and balance problems and the nausea associated with it. Tell her to be brave, it will improve. Tell her to sleep, do any arts and crafts that she likes which works another part of her brain completely, and do not think she is going to be like this all the rest of her life. Depression sets in pretty quick when your world becomes so small. Good Luck and let me know how she is doing. You are a great daughter to be trying to reach out and find help or understanding of her condition for her. Sincerely, T.
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451975_tn?1372332199
As I write this neecie73, I just had to pick up my granola & fruit that leap from my hand! This is not unusual for me. The speech problems are still there, when I speak on the phone, my regular words/conv., are only okay for about 10 min. and then I start to 'lose' it. I know you are scared for your mom but please explore the possible emotional connection in all of this. Ask her doctor for a referral to a Neuropsychiatrist who specializes in all aspects of brain function. They are trained to deal with migraine, depression, epilepsy, atypical neurological symptons and do not differentiate between the illnesses at all. Their job is to unravel the 'mess' in the brain, try to help the patient understand what may be contributing to their problem and also to tell them the almost forbidden rule with doctors, and that is, 'we just don't know what is going on here'. I have found a wonderful doctor and go for therapy every month or so. I don't know if you have insurance but see if her doctor has any recommendations. In the meantime, tell you mom to hang on, I've found even 1/2 a gravol every four or five hours really helps the dizziness and balance problems and the nausea associated with it. Tell her to be brave, it will improve. Tell her to sleep, do any arts and crafts that she likes which works another part of her brain completely, and do not think she is going to be like this all the rest of her life. Depression sets in pretty quick when your world becomes so small. Good Luck and let me know how she is doing. You are a great daughter to be trying to reach out and find help or understanding of her condition for her. Sincerely, T.
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451975_tn?1372332199
I wanted to share this information that was sent to me by a doctor on this site. I know everyone is different but this advice might be of help to your mom. Sincerely, T.

Hi,

I do understand how difficult it was for you.But you have been strong and your family has been very supportive.You are still lucky and blessed.

With regards to your symptoms, were your doctors able to give you a definite diagnosis ?

Were any cardiac problems ruled out?

Were your coagulation factor levels ( Prothrombin, APTT and fibrinogen ) evaluated?

Were your thyroid and parathyroid hormones assessed?

In the absence of any significant findings in the CT scan and MRI, you may be having basilar or vestibular migraines.These type of migraines may be difficult to  differentiate from a transient ischemic attack which is a cerebrovascular disorder. Basilar or vestibular migraines have been associated with vascular spasms at the base of the brain which may explain the reversible symptoms of slurring of speech, visual problems and weakness in the extremities.

Close supervision is necessary and I do understand that the attacks may be very disconcerting and almost debilitating. At this point, I can not think of any futher evaluation that may be needed.Continue with the medications,physical therapy and counselling as these are beneficial.

Also you may be open to other forms of alternative medical therapy like acupuncture and reiki (japanese hand or palm healing) which has been used by several physicians to complement medical therapy.
R
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451975_tn?1372332199
Neecie73,

Sorry, I sent you a reply that was meant for someone else!!!  I will forward to you, though, some advice that was given to me by a physician on this site.  It may offer you some information that you could take to your doctor and discuss.  Everyone is different and I am certainly not diagnosing here, but, maybe there is something in her advice that may pertain to you.
As far as coping...hang on, realize that depression and frustration become your foes when you are trying to deal with something that disables you and causes such fright about your future. Let me know how you do, I really would like to be of support. It is now two years, my doctor just put me on something called, 'Lyrica', as a mood stabilizer and to deal with chronic pain from an old injury. I am really so much better but the speech is still a big problem, the whirlies & loss of balance, clumsiness still haunt me. I am an elegant, young looking 50 year old and people take a second glance when I am out and dressed nicely. Then, bang, I walk into a display, knock it down, walk into people as they are walking toward me because my perception is all off and man, do I feel like an idiot. Just imagine, I go into a nice restaurant, speech was okay before I left, but after the car ride I can feel my head becoming all jumble, but still manage to get in the door, wobbling just a bit, but you know they may think I've just been drinking, then they greet me with a big hello, I open my mouth to say hello back and guess what, 'fark' or 'lahow' comes out!!!!!!!! Holy cow...they just look at me like, 'what planet did this lady come from' and then on we go to a very difficult time trying to order dinner and not be so humiliated that I want to slink out the back door.  Be brave, don't give in to the fear, and get some councelling with a Neuropsychiatrist if this goes on for a long time. You will need help in dealing with the day to day problems you will encounter. Keep in touch, I look forward to hearing of your progress! Sincerely, T.
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451975_tn?1372332199
Hi, just wanted to check in with you. At my appt. on Thursday of last week, my Neuropsychiatrist has put me on a drug called, 'Lyrica'. I/my husband notices within a few days that I was up and about, more productive and much less burdened than I had been in a long time. It's amazing to me because I have tried so many antidepressants and none seemed to work alone, I always needed a cocktail to maintain an even mood. I feel 20, energy wise. He tells me that all of the doctors I've seen are basically casting a wide net over me and have no one particular diagnosis.

I still become off balance when in a car, watch anything passing in front of my eyes quickly or moving objects on the tv. When that starts, my speech starts to slur and garble as well. I get nauseous when I go to large box stores, i.e. Home Depot, Costco, and just try to keep my eyes trained to the cart or floor in front of me. If I don't, I start walking into displays or people, knocking things down, and staggering. Not a pretty sight for a pretty lady, trust me.

I try to encourage others who contact me because this is now 2 years on and I am just beginning to be able to leave the house and walk a few blocks. I finally was able to get on the treadmill and I can read more. With the lyrica helping with chronic pain from previous injuries, (2000, I broke my hip, left leg multiple fractures, ankle, left rotator cuff torn during training for a marathon) and allowing me to feel unburdened as I have felt for years now, I feel hope and encouragement.

I thank you for keeping in touch and will let you know my progress. T.
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Avatar_f_tn
Hello.  I just wanted to say to all of you that reading your experiences just in the last five minutes has helped me so much.  I am  22 years old and just got back from studying abroad in London.  I am totally blind and up until this year I was living a fairly independent life, travelling and studying multiple languages.  Then suddenly I began to have periods where I couldn't move my hands and feet and began to lose speech.  I also suffered terrible migraines, ten times worse than the ones I've had for 10 years.  Since all this started I have had seizure like episodes where I wshake uncontrollably and almost swallow my tongue, I have had temporary weakness to the point of paralysis on my left side, and have experienced frequent visual and auditory hallucinations.  I think this is the scariest part of my experiences, since I have only ever been able to see light.  Suddenly the room actually looks different, I see streaks and spots, and my entire surroundings change so much that it is difficult for me to walk.  I have only recently been referred to a more specialized neurologist, an in the meantime I am on Neurontin, soething the doctors tell me is usually used for chronic pain.  This has helped a lot with most of my symptoms but this week I haven't been able to talk properly for almost 4 days and continue to experience weakness and clumsiness.  I also experience memory loss and problems with vocabulary, and knowing someone else is also experiencing these things has made me feel less alone.  I'm not used to be confined to my house and having people treat me with even more pity because now I seem to be a truly mentally challenged blind person.  So I just wanted to say thank you everyone for sharing your experiences and suggesting alternative care.
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451975_tn?1372332199
Boy, have you got a huge load to carry! I can only tell you that there is a light at the end of the tunnel and hopefully the doctors will be able to find some relief for you.

I know that a huge percentage of dealing with these problems and moving forward is having the support and understanding of those around us. I am sure that you feel that others are treating you with kid gloves, and that the hovering and fussing has increased to an almost untolerable level, but remember, they love you, are very worried that this may be something serious that will progress to something terminal. They are scared to death of what they, 'don't know', about your condition and perhaps are frustrated that doctors can't yet tell them/you anything more specific. Have patience with them, I know how hard it is.

This forum has also given me a sense of support and encouragement. My symptoms are slowly improving but it is still such a challenge everyday. When I do go out I must be very vigilant about changes beginning in my head, speech, walking clumsiness and know when it is time to go home. If I push myself, I end up in a dark room, in bed, zonked out on gravol and up until Lyrica, too many painkillers. Any light in the room blinds me with pain and I am dizzy and off balance for another stretch of time. One thing I am learning, being an overachiever in the past, is to know the signals and do what is necessary to avoid things that will leave me out of control. Yes, I walk into people, knock displays down, try and pick things up and knock more down...the list is endless. All I can do is say, 'sorry, I am a little unsteady', smile and, get the heck out of there!

Have courage, take the help when you need it and don't confuse concern and fear with overprotection. You are still the same person you were before, dynamic, I think, and for the time being, just have yet one more hurdle to beat. Stay in touch, I'd love to hear of your progress. I know you are going to do great!  Sincerely, T
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Avatar_f_tn
I feel your delima.
I'm 45yrs old, have been having stroke like symtoms (symptoms) for at least the last 15 yrs.
slurr speech, voice comes and goes,face tightens,no strength in arms or legs, walk like a drunk, loss memory.headaches. blurred vision.
spent over $30,000 in medical bills. Doctors said all in my "head."
these spells last from 1 day to a month depending on severity.
I finally went to a chiropractor.He took xrays of my neck. found neck curved 4 degrees BACKWARDS!!! this causes EXTREME muscle spasms. It blocks the blood flow to the brain.
I have to be carefull how much I use my arms.walk,and position of neck.
any jarring or over use can cause spells. I never get too far away from home, especiall ey without my cell phone!!
the only relief is to lay down and take natural anti flammatory pills.
also after a warm shower lay on hard seface with a hand towel under the neck.this works wonders.

I do get a little testy at times, so I just give my self a good talking to and pray.
I't helps.


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Avatar_f_tn
I have recently begun seeking information for basal artery insufficiency and spasms when I saw this post.  That is my diagnosis and I have the same symptoms as you also with perhaps more pronounced vision loss and dementia.  I have been sick with this for about 12 years starting with hemipelgic migraines then a few years later with basilar (& cerebral) migraines.  You may want to ask about insuffiency of the vertobrobasilar or basilar arteries as a possible cause.  Additionally, upon research I found that the basilar migraines can cause mini-strokes.  For me these are migraine attacks that last for months with permanent damage as well as transient damage.  The attacks seem to come and go.  Even though the MRI results are negative, classification would dictate that the permanent damage are actually strokes as my dementia has lasted 4 years (was severe now moderate-stable) and my peripheral vision and depth perception has never resolved and has become worse over the past 3 years.  I take aspirin, which helps some, and pamelor for migraines, that only helps the pain a little.  If anyone has any information as to what this is, I would appreciate anything I could get on this.  Like all of you, it is playing havoc on my life.  Everything is going along fine, then bam, these nightmare migraines come on.  My world just crashes down and I loose everything and everyone.  Needless to say, I end up with depression.  Which is what they use to diagnose this as until the doctors and counselors (in the same clinic) got to know me for a few years and realized I don't have depression until AFTER these attacks hit and the neuro specialists confirmed it to be organic in nature.  I now also know that I have CNS Lupus now also from all the organ damage I have gathered in the last couple of years, so I am not sure if the two problems are connected.  I gather the two play off each other though.  It seems that every time I get hit with a severe infection or MRSA that I get one of these attacks within a month or two following the infections.  For me there are a lot of pieces to put together, but hopefully they can narrow yours down.  There is a SPECT and I believe a PET test that can be performed that measures your blood flow in the brain.  It has been used for sleep studies and psychiatric studies.  I think that would be best to do.  I was told the MRI may not pick up damage to the small blood vessels in the brain especially near the basal artery which is in the middle of your brain.  You can have small infarcts causing strokes in these vessels called small blood vessel disease.  It is rare but possible.  There are also certain autoimmune diseases that can cause your arteries to spasm and/or clot and a rhuematologist or hematologist can run tests for these autoimmune antibodies.  Also if you have cardio (heart) problems such as atherlosclerosis or aortic/mitral valve sclerosis it could produce blood clots in your brain too.  I was told the MRI only picks up if there is a large stroke and it may not pick up smaller strokes.  Trust me enough of these smaller strokes are just as serious.  That, and they can lead to larger strokes down the line.  I wish you all the best.  Please keep me posted - Thanks - Kristin
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Avatar_n_tn
You mention that when you are in Big Box stores that you experience challenges. Have you been told that you have photophobia, sensitivity to flourescent lighting? I always wear coloured lenses (glasses) when i go into large department stores, otherwise after 10 mins I feel a sense of dread, trouble breathing, balance issues, speech problems. Some say that green blue tint helps with fluourescents.
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451975_tn?1372332199
Hi, thanks for the informative and helpful message.  While I do have some good days in a row now, I am still in this state. While the doctors tell me this is not 'mini stroke' or TMA, I do wonder. I am 51 and though healthy, my grandmother had many small strokes and died of a massive on at age 52. I find that somewhat daunting though I know I am probably in better physical shape (or was) and have a happier life.  Makes you wonder though if there isn't just a 'hard wiring issue' at play here. It sure helps that there is a site like this to communicate and share information with one another. I have learned and understood more online than I have from the extensive hospital visits/testing and consults where the supposed experts have had an opinion but other than offering anti depressants and councelling, really don't have anything new of offer me in the way of living with this or helping me be more proactive in combatting symptoms.

I hope your days are better and I would love to hear more from you whenever you are up to it. Many thanks
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451975_tn?1372332199
I am now experiencing intermittent bouts of not being able to swallow along with the left sided weakness. Though there have been about four times when I had that panicky feeling of not being able to swallow and it woke me up in the night. Any ideas or experiences, advise out there?

Likesjewellry
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Avatar_f_tn
Hi,
There is a possibility that this could be  migraine which is triggered by closed and crowded spaces. What medications are you currently on apart from gravol?
Another reason could be you are experiencing menopausal symptoms. Headaches, dizziness, loss of memory are typical menopausal symptoms.
http://34-menopause-symptoms.com/
I would suggest to you to schedule an appointment with your doctor and discuss these possibilities. Good luck!


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451975_tn?1372332199
Thank you for replying. I am taking Epival, 700 mg./day, Zoloft 200 mg./day, Lyrica, 100 mg./day. Both the Epival and the Zoloft are drugs that I have been on for approx. 9 yrs. Before the onset of all these bizarre symptoms, I was highly functional and productive in my life. I will check out the menopause symptoms pages you suggested. If you have any further thoughts on my situation, please let me know. Thank you, T.
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Avatar_f_tn
HI have you considered looking up hemiplegic migraines.i have suffered with these for 2 years .they can mimic stroke like symptoms!!( just an idea !!!
rach
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451975_tn?1372332199
No. I haven't thought about that possibility. My youngest daughter started having very strange, 'epilepsy type' episodes, as a baby that continued on through adolescense. They ranged from mild focal 'seizures' to 'grand mal like' seizures'. She also had something the doctors said were 'alternating hemiplegic like seizures'. They never could get a diagnosis and thank god she grew up without intellectual diminishment as all kids do who experience the real seizure condition that she presented, but, it was a very scary life for all of us. Eventually a specialist in Montreal suggested it was an inherited form of migraine from both myself and her father...at the time I did not believe him. Now, I know better!
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Avatar_n_tn
Hemiplegic migrianes I have them  they hurt very scary thing, My understanding very rare migriane. Does anyone have any info on them. Thanks
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Avatar_n_tn
All I can say is I've had similar problems over the years (dizziness, garbled speech, migraines, pain, weakness, fatigue and on and on) and am an otherwise very healthy 54-year-old.  I want to emphasize very healthy because there is nothing wrong with me that is life threatening, and I believe only one MD has diagnosed me correctly, and that is Dr. R. Paul Amand in the Los Angeles area (where I live).  When you see me mention Fibromyalgia, you might think wastebasket diagnosis, or that Fibromyalgia is only about 11 of 18 pain points to "qualify" for the diagnosis.  All I can say is, please visit www.fibromyalgiatreatment.com, and take time to read the site thoroughly.  You might find many of the symptoms listed, and, of course, some will overlap with other ailments people have, but I can't tell you the relief I've found with the Dr's protocol.  It takes time, but I'm seeing the results. Dr. St. Amand is an endocrinologist, teaches at UCLA and has been working with the City of Hope on Fibromyalgia (even he doesn't like that term, but it's what we have to work with right now).  I'm not prosletyzing, just sharing my own experience.  Good luck to you.  It's not easy, but hang in there!  
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Avatar_f_tn
hi i am haveing the same thingk happening to me i have for 16 years i also have really bad anxiety and  i hardley leave my home i am so afraid that i will have one outside of my home i can really feel for you and wish you well good luck
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I too sufer with the symtoms (symptoms) you describe and have done for the last ten years, the slurred speach,the no control over your limbs and dizziness well that's the only word (dizziness)for it but it is more than dizziness as I'm sure everyone who as suffered these symtoms (symptoms) knows. I have not had a diagnosis  although I have had a number of tests, CT and MRI scans yet still nothing. It first happened "the dizziness" when I was about ten but only lasted for a couple of minutes there was nobody with me at the time and I never told anyone I stupidly thought that maybe it's something that happens when we are growing, Silly I know but I was just a child. From then until I was 21 it happened a number of times so many I lost count but each time lasting for no more than a few minutes although on a couple of occasions I can remember it lasting up to half an hour. Then when I was 21 it got bad and I was unable to stay at my current employment. I was living and working away and loving it until I got ill and had to return home. Back home for two years I had to work part time on and off as I could, doing work which I didn't want to do but had no choice there was only certain things I could manage which was very frustrating as I'm sure many of you will understand. Anyway then after two years I started to feel better for longer periods of time and I returned to the place where I had worked before I had gotten sick and for nearly four years I was fine and had mostly forgotten about the two years out of my life as I called it. But then the dizziness started to come back and at first I struggled on I wasn't going to give in without a fight. Well that lasted for more than a year and the majority of that time I was off work. It was 1999 at the end of October when I finally held up my hands and admited to myself that I would have to go back home again, I almost fell apart and I think it was just pure determination that held me together and still does. I know if my boss at the time was not so understanding then I would have lost my job a long time before I admited defeat. Well here I am it's august 2008 and I've not been able to work since 1999, Because of the mystery illness. There are a whole lot of other problems that come along with the illness as I'm sure some of you will have had to deal with and maybe don't need more drawl from me telling you about them. I think there are more people with this kind of problem than we realise and there should be a website which deals with this kind of thing and maybe people could chat and air there problems and opinions and feel less isolated the possibilities for such a site could be endless and maybe if no one else starts one then I will.What are your thoughts on such a website as much feedback as possible would be appriciated. I would just like to close by wishing everyone well and thanking likesjewellry for starting this topic.
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comment no.2
right I've just made a total idiot out of myself ref. the last section about a good site ooh yeah just like this one, well I hope I made some people laugh if nothing else.
Now I've found this exceptionally good site I'm a little happier than I was before now I have somewhere to air my opinions etc. thanks.
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451975_tn?1372332199
I am not sure what I said that made a difference for you but I do understand the relief that you feel in finding others who are struggling with these same symptoms. I still can't believe that this is still going on. I think I have improved since the onset, 2 + yrs. ago but I have noticed such muscle atrophy in my body and face from having to be in bed so much and that, in particular, does nothing for my self esteem when you consider I was always so fit, slim and energetic! Sometimes I think I could handle some, (not all), of the symptoms better if I could just get out and exercise more. If I could walk six blocks on my own, spend 20 minutes on the treadmill without falling over, or do some yoga...anything to get the blood flowing that won't start the cycle of balance loss, nausea, visual interferences/loss, super sensitivity to light/noise, etc. Yes, lets keep in touch. I wonder how many people have lost such huge chunks of their lives to this phantom illness that doctors really want to call, 'depression', 'trauma repression', anything other than, 'brain disorder'. I will keep searching for a professional here who is willing to explore other avenues than psychiatric counselling for the results of living with this. In the meantime, I have once again taken up my sketch pencils and paints, which I can do in bed, and remembered that I have some talent there. So, I draw when I can, read when I can, sleep a lot because of the gravol and sit and admire the flowers in my garden. My life in a nutshell. Take care Jazzy!     ps. how old are you?? is this also a midlife situation for you?
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557119_tn?1225279413
You might want to get an MRA to determine if you have a severed or dissected vertebral artery.  Follow that up with an ENG test (for vestibular and vision abnormalities).  I have had the same symptoms you describe and that is what happened to me. It took a grand total of 3 years to finally get a diagnosis and confirmation. I even went to John Hopkins Hospital for testing.  Finally, I had a brain MRI that showed that I'd had a stroke.  I was sent to a Neurologist who, fortunately for me, knew exactly what was going on when he looked at my brain MRI.  He looked at me and said, "you should be dead, we usually see this on autopsy".  I was stunned! He asked how it happened. I told him that I had been in police training where I got my neck jerked and was hit in the head at the same time.  The bodily force of the head trauma was very painful and caused me to have a severe headache.  My employer had been paying workers comp for when I was out of work, etc..., but refused to pay for further testing.  I was having to pay out of pocket, and therefore filed a law suit, which was eventually settled. Not a million, but close to six figures, minus attorney fees. However, I am permanently disabled.  

This all took 8 years to get finalized and I continued to work as a patrol officer, driving and dealing with the criminal element, carrying a gun, and taking hydrocodone as well as other medications while trying to survive. My employer was not happy with me taking narcotics and working, but my Neuro doctor told them that they should not have had such hazardous training and should do the right thing or else I was going to keep working until I could no longer tolerate it.  

I learned some ways of compensating, and my co-workers were aware of my limitations, so it worked out ok until one day I became extremely ill.  I am truly a walking miracle, or so the doctors say.  I worked for 8 years after having the stroke due to being struck in the head.  

The first instance where things started to not be done right was when I collapsed and was taken to the ER.  Even though the EMT in the ambulance told me he thought I was having a stroke, The ER doctor did not recognize that I was having a stroke. He did no CT or MRI, even though I had a closed head injury.  I was vomiting, had nystagmus, and loss of bodily functions. All documented by him, but instead of further testing and medication, he referred me to an ENT the next day! Discharged!

Seriously, you must take control of your own health care. I had to do just that in order to get the help that I needed.  Eventually, my symptoms were so bad that I had to retire after 15 years with the police department. I don't know what happned to make my already frequently debilitating symptoms become extraordinarily severe. Perhaps it was the onset of menopause, or the tremendous stress of my job, or that I have had several incidents where I was struck in the face or head since that time. It's part of being an officer.   I am taking cymbalta, diazepam, and hydrocodone for head pain.  I also take a magnesium supplement as well as B vitamins.  I went through months of vestibular therapy. I suffer from dizziness, vertigo, and nystagmus which has become oscillopsia.  I am at a high risk for falls. I gait and balance problems. Vision that is blurred sometimes and others is ok.  I don't drive when I am feeling unsteady.  I have learned many compensating techniques, that's how I kept working so long after the incident, but I don't ever drive or do housework when I am feeling very sick.  

It took me a long time to put all of the puzzle pieces together in order to get compensation from my employer, to quit working, and to get the medications that help me get through the bad days at this time. I've taken other medications, but my current medications, eleminating as much stress as possible, meditation and relaxation, and recognizing my limitations have helped me tremendously.  Keep me posted on your condition. I will let you know if I find out any further information that might help you.
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Avatar_f_tn
I just had my first episode with the stroke like migraine.  My MRI or MRA i think its called to look at the blood vessels in my head came back with nothing out of the normal.  I ended up in the hospital with very low potassium along with the loss of muscle control in my arms and hands, some leg control.. and the major one.. my speech.  i was able to regain it all once my potassium went up.  speech was the last thing back.  I could think rationally it just wouldnt come out.   They are thinking its migrain related but i dont have migrains.  I have PVC partical ventricular contractions of my heart as well.  I take Norvosac for that and am now on Plavix as well.   I have had Fibromyagia for years now.  I tend to wonder if that is all tied in together.    After this episode I am now really light sensitive, my hands and arms aren't fully back yet along with a killer headache that does not go away... thanks for listening to me ramble.  

Blessed Be  
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Avatar_f_tn
Hi,

I know someone who has been having frequent stroke-like episodes.  They occur usually within about a month of each other and have been increasing in severity.  This person is only 22 years old and the episodes involves dizziness, speech difficulty, loss of balance, transient paralysis, and migraines.  He has seen many doctors, including neurologists and none of them have been able to give him an idea of what it could be. He has been to the hospital several times and they said it was possibly a TIA, however, it keeps happening so I was just wondering if maybe you could suggest some things it could possibly be so he can ask his neurologist about it.  It is just really frustrating because everyone he sees diagnoses it as something different so I thought maybe you could help by giving a list of things to look out for.  Also, he just recently had an episode and he was still feeling the effects the day after.  He said that his eye was bothering him.  Anyway I really hope you can help.  Thanks so much.

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Avatar_f_tn
I have had migraines since I was 16 years old I am now 27. Every migraine that I have has stroke like symptoms(loss of sight, numbness of half of body, dizziness, loss of speech, severe headaches for days after, and a foggy feeling in my brain). The first time I had an episode I was taken to the emergency room where the doctors gave me shots to get rid of the nausea, this didn't help at all. They did a CAT scan and found nothing wrong. I have linked my migraines to birth control pills and my menstrual cycle that is the only common factors every time that I have a migraine. Only prescription that works for me is MAXALT, but even for days after my migraines i have fatigue, i am very thirsty, and have a headache almost every day for 4 days.  The first time I had a migraine they thought I was having a stroke.  My mom also suffers from migraines but as she has gotten older she doesnt have them as much.

cathy
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451975_tn?1372332199
Hi, Likesjewellry here. I wanted to ask you how you are doing now and has anything changed at all for you? It is difficult to keep up with everyone on this site but the more posts I see, the more I think there is a connection between migraine & fibromyalgia in my case. The symptoms are exactly the same, they have not ceased at all. Life can be pretty depressing but considering all else that could be wrong, I try to see the bright side of things. Let me know how you are doing. Have you gone back to work? Have you taken up any hobbies at all? I am currently working on quilts, some of which are sent to an org. called, 'Quilts of Valour', (I believe there is also a U.S. affiliation), which donates a handmade quilt to an injured soldier returning from Afghanistan. I am also working on a gallery showing in July which will be titled, 'Quilts - Fabric Art', where I will display about 24 of my quilts all of different themes and levels of artistic adventure. They are all useable but definitely not conventional! Anyway, take good care and keep in touch. Terina
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451975_tn?1372332199
Hi Jen, How are you? I haven't heard from you in a while and wanted to check in a see if you have survived this long, cold winter...you had a lot of snow this year, too, very strange for your part of the world. It has been uncommonly cold here. They also tell us that we have had record snowfall but I don't really see much difference from last year.  I am still plugging away. Somedays I just feel useless and blobby from being in bed so much but I am slowly taking even 10 or 15 minutes of time that is good to get up and go to my sewing room where I am working on quilts for a gallery show this July. I set this goal for myself as a challenge. If I am going to be bed ridden most of the time, and since drawing/painting became a trigger for episodes, I am now sewing, beading, ribboning, etc. My quilts are very contemporary and eclectic. I am doing this show which will be called, Quilts-Fabric Art, along with my daughter who lives in Scotland and is a jewellery designer. She is designing a new line to send me for the showing so it will be quite the family affair. My mother is also an artist but she will work the show on a daily basis as there is a pretty slim chance that I can be up for hours on end. I have also joined forces with a group called, Quilts of Valour, who provide a quilt for every injured soldier returning home to Canada from Afghanistan/Iraq. I love being part of that. Anyway, my hubby is an ex-military officer, a tank commander, who supports my efforts in that way, obviously. He now works as a stationary engineer in our local hospital but he is definitely a soldier, through and through, and built like a tank!! I never ask him to fix or do anything which requires fine motor skills...once I asked him if he could straighten the leg of a cast iron plant stand for me and I heard him make some funny noises in the other room and when I walked in, there he was, sheepish and holding the leg in his hand! He's popeye and doesn't know it! Anyway, he is a tender hearted love, the best guy for me. Anyway Jen, stay upside and let me know how you are doing, ok? Terina
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Avatar_m_tn
Do this and come back to report your progress after 3 weeks.You will notice  benefits gradually.Do not give up before 4 weeks as it takes time to feel the effects.
The Yoga Pranayam (breathing exercises) will  help with your  problems.
Build up your timing gradually. If you feel tired or dizzy, stop and resume after 1 minute.

Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose. Duration upto 5 minutes.

Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 10 to 30 minutes twice a day. Not for pregnant women. Seriously ill people do it gently.

Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day).
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.

Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 12  times

Once you are better, continue the pranayam once a day.
Be patient, as the benefits will show over a period of weeks.Only by doing you will benefit
and feel good because you are helping your body.Those who say I have tried everything....
will be amazed at the result of doing pranayam.
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Avatar_f_tn
Hi. Here is the silent lurker again, after a really long time. I haven't had the greatest success rate with my treatment, and I was hoping you guys might have some ideas for my new project, assuming I can get it started.
I was finally diagnosed with complex migraines and psychogenic seizures, so most of the things that go wrong with me are treated as stress related. I've done everything I possibly can to reduce the stress that might affect these migraines, but nothing seems to help. My vertigo has gotten worse, and now I am beginning to have problems physically judging distances and sizes of things, which is a nightmare for a totally blind person. *half-smile* Anyway, the point of this ramble is basically that I'm trying to collect more information about people with these kinds of migraines, since it's so rare. I'd like to have something to offer to the doctors. Also, I'm considering starting a blog about it, since there seems to be so little information on the net. We've discovered that a lot of premature babies seem to have issues with severe migraines and optic nerve problems that either haven't been studied or they're hiding the results in some obscure journal. If anyone has anything they'd like to contribute, or even any pointers for this medical newbie, I'd really appreciate it. I'm slowly going insane and since this thing has a character limit I won't post all that stuff just now.
Thanks a lot for the ears and the support.
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451975_tn?1372332199
I have new symptoms to report now. As well as everything else, 2 weeks ago I started to experience a 'tightening' of my major muscle groups. The tightening caused contraction all over my body including tongue, throat, neck, mouth in a grimace, legs, can't walk, hands twisted and stuck in one position, all of this alternating throughout my body and causing pain, contortions, inability to speak or swallow. What else could possibly develop with this whole thing. All of this started 3 years ago with dizziness, nausea, vision distortion, speech coming and going from slurring, twisting words around, or just a general loss of my words. I am not on any new drugs, in fact, I have discontinued the Lyrica, and have cut down on the Epival and Zoloft. My hubby has always questioned if my symptoms were caused by these drugs which I have been on for about 15 years. Any ideas? Anyone? Doctors treated me with IV Cojentin to ease the contractions and I still need gravol everyday for nausea and dizziness. No fun at all...hoping someone can offer some insight or advice. Thank you, T.
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Avatar_m_tn
I have had migraines since early childhood. I usually get them 2 to 3 times a year and it is usually when there is a change in the weather (like from spring to summer). In the past few years they had gotten so bad that I would sometimes lose vision in one eye or would have a massive aura that would debilitate me for a few days.

Usually, when I feel them coming on, I could wane them off with two aspirin, 5mg of Lexapro and applying ice against my carotid arteries. Starting last year, I noticed that even though I seem to stop them, I still get slight headaches lasting for a few days and I lose the ability to make mental connections, such as putting names to faces of friends. Doctors have done tests, MRI and CT scans and I have taken different types of prescription medications, trying to find one that works. It is starting to scare me, but doctors say it’s "normal" and that not much is known about migraines to accurately treat them. Does anyone else have these symptoms?
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Avatar_m_tn
Do this relaxation technique and you will notice the migraine easing off after a few weeks.Initially do it 3 times a day.Drink warm water, and avoid cold drinks.Come back to report your progress.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 10 to 20  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
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Avatar_m_tn
Hey Likesjewellry I'm not a doctor but I have had to deal with some strange health issues, I went to countless doctors to have them conduct numerous tests to have them all tell me they found nothing and I was fine!  I even had them point me in the direction of psycology to have that checked out, I was not in a degegraded mental state, although all the work in that area helps it did not solve the problem.  My issues turned out to be caused by these three items Parasites, Mercury toxicity, Candida Albacans (excess yeast in the digestive tract).  If I were you I'd do some research on finding a doctor that can do proper testing for parasites, I'm relatively young and I was having problems with my health I found a speciality doctor and he tested me for parasites.  They identified 8 different parasites in my system, the doctor then started administering the proper drug to kill the particular parasite, then tested to see if it was dead, this process took some time due to some bugs being pretty resilient I had to take up to 4 rounds of antibiotic to kill off the most difficult Parasite, liver fluke! These types of parasites are nasty any one can get them anywhere, even in the us, poor food handeling or you or someone not washing their hands, biting nails can give you a parasite.  If you read up on them you might find that some of the symptoms are similar to what you are dealing with.  Find a doctor in your area that specializes in this fiel of medicine, they have to me a MD to perscribe the Rx's necessary to kill off the parasites - book to read, guess what came to dinner!  If you can not locate a doctor!  Call these labs I've sent countless samples to each of these labs they all have doctors from all over North America sending in samples that are specialists in this filed of medicine call them for referals and start interviewing each doctor to find one that is aware of your symptoms and knows what you are dealing with, google them.  1. Doctors Data, 2. Diagnostechs 3. Genova Diagnostics http://www.genovadiagnostics.com 4. Metametrix medical research labs, Call all & get there doctors referal then call all the doctors and tell them what your dealing with and 1 will stand out, go to that doctor - Good Luck
Roger
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Avatar_f_tn
Maybe someone can help with my case. Back in June I had a spell (they called it a mini stroke. Slurred speach, (had been having vertigo for months went through ENT, no findings with inner ear or labrynth). loss of balance also have dizziness and cannot communicate with others. Feel too exhaused. I cannot comprehened what EMTs say to me when 911 has been called.  I then do not remember these spells or what was done to me in the hospital. complete exhaustion and memory loss during spells. After spells it takes me a few days of just sleeping to come back to normal. the Neuros put me on Verapamil to treat mirgrains and blood pressure. However I have been on the meds quite some time and have gotten rid of migrains/headaches and has completely controled my high blood pressure. But am still having these (what I call) spells. People say that during the spell I seem like I am on drugs. they are now using the word epilecptic episodes. Does anyone have any ideas as to what can be going on with me. and if epilepcy is truly a possiblity.

Thank you
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Avatar_m_tn
Do the anulom vilom pranayam  described in my April 14 ,2010 post, for 30 minutes, twice a day. This will help to balance the left and right brain, and in turn your balance.
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Avatar_f_tn
here's a question.  I have had a severe headache for 224 days out of 280.  I am be ridden with them.  They start at the base of my skull to the top of my head.  I have a vascular illness as well.  Lately the pain seems to be in the front of my neck to the jawline as well.  I get shaky and feel like I am bottoming out just before I vomit profusely.  Then I lay down for about half hour the pain is there but the bottoming out sensation goes.  Any ideas. I have total or partial speech loss most of the time.
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Avatar_f_tn
Cant walk,no motor skills,slurred speech,difficulty,blurred vision,tremors sometimes, The doctors have no idea whats wrong they said I have cerebellar ataxia which is like a stroke but didn't have one but real healthy otherwise and I have been like this for 7 years and I am 42 years old. Does anyone have any ideas,help me someone please,I am sick of this
tee
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Avatar_f_tn
difficulty writing,headaches now,throbbing
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Avatar_m_tn
Look at my earlier posts on this forum thread and do the pranayam - breathing techniques, and you will be helping yourself to get better. After you start, I can guide you further.
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Avatar_dr_f_tn
Hi,
How are you? Are there other symptoms present? What diagnostic tests were done in the past? You may benefit from another neurologist's opinion for proper evaluation. If imaging studies were done, bring the previous plates for assessment. A new referral for a CT scan or MRI may also be indicated. Take care and hope to hear from you soon.
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Avatar_f_tn
To Rowena Santos
I had a ct scan and mri done a few years ago,spinal tap and other tests a few years ago,someone told me to test for pernicious anemia they have alot of the same symptoms.Do you think I need to have these tests repeated. Did I mention I have brain shrinkage,hallucinations and headaches now
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Avatar_f_tn
I haven't had imaging studies done only bloodwork no metals or vitamins deficiency tests done
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Avatar_f_tn
No hallucinations sorry for that
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Avatar_m_tn
About 7 years ago I started having symptoms of slurred speech  then couldn't walk,went from cane to wheelchair,difficulty writing then blurred vision and no motor skills.
I am 42 years old and it's been 7 years. The doctor's say I have acute cerebellar ataxia which is like a stroke,but I have some serious doubts,no infections and otherwise very healthy.
They told cerebellar ataxia because they don't know what it could be. They just know my cerebellum in my brain shrunk and still trying to figure out why? Could it be as simple as a vitamin deficiency and what kind of vitamin could possibly do this.
No headaches at all,mother died of breast cancer at age 43,father father died of cancer as well,he had stomach,lung and liver cancer at age 54.
Any suggestions/answers of what this could be
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Avatar_m_tn
I had a front end collision in 2010 and had a really bad episode of stroke like symptoms them.  My dr. sent me to the hospital for test ( ct, bloodwork I think).  Only conclusion then was a concussion from the accident, even though I did not bump my head I was just jerked forward and to the left side.  Now, for the past 4 or 5 months the dizziness, weakness, numbness, tingling and sometimes pain on my left side are getting worse.  Sometimes I feel like I can't hardly hear or see.  I feel like I'm down in a tunnel almost and my ears are ringing.  I feel tired all the time, can't focus at times, stumble around and drag my left leg and foot. I am so frustrated now I went to the heart dr. they did some test and found me to have a right inner carotid dilatation and 50% blockage, but the Vascular dr. I just went to gave me some flip diagnosis of dizziness and giddiness and said my insides were beautiful.  I feel like no one is really helping me and they are just taking my money.  I will go back to the heart dr. and the neurologist in Dec./2011 so maybe they will have some new ideas as to what can be done.  I'm sick of being sick an tired.  Joyce
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4444843_tn?1354677896
I thought I was the only one with stroke symptoms that aren't a stroke! It's to the point where I'm in a power chair now. I have general weakness that started on my left side and has progressed to my entire body. I have intermittent paralysis on my left side. It just quits.
As a child and teen I suffered massive headaches and blackouts.
I know what I DON'T have (MS, ALS, Stroke, CHF) but I don't have a diagnosis. It's bad enough that some of the medtechs at the VA are calling me "patient one".
If anyone gets anything that may pin this down, PLEASE let me know.
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Avatar_f_tn
please look into ion channelopathies try supplementing potassium and low carb potassium rich diet,, if in two to three days if you are in less pain moving better or in anyway improved please contact a specialist dealing with this,, my ion channelopathy is andersen tawil syndrome but there are others also..only do the diet and potassium if potassium runs normal to low.. and kidneys are still healthy bless you all..karen
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Avatar_m_tn
Hi,

I don't know if this is still a problem for you, but at 49 I had the symptoms you mention except it was my right side that went weak. Basically the vertigo/dizziness, nausea, weak right side, and it felt like I was walking on the floor of a funhouse which caused me to reach for stable things like walls or tables when walking. In addition, in severe episodes I would lose my speech, or just lock up and not be able to move. The accompanying headaches were extreme.

As part of a battery of tests that my never-say-die neurologist and primary care physicians included a spinal tap. While I was supposed to lay down and feel rough after this, I instead felt like my old self, with a cessation of symptoms. My neurologist performed another one when he heard this, and I felt great again. He feels I likely have normal pressure hydrocephalus, or water on the brain. He will be admitting me in the next week or so for a lumbar drain, just to confirm the symptoms go away, and if so, will put in a shunt. He says mine is an unusual presentation for NPH, and that I am young, but we can't argue with feeling great after a spinal tap. Maybe this will help you.
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Avatar_m_tn
My name is Sharaz On March 5th I felt a sharp pain in my stomach about five minutes after there were a sharp cramping pain in my head then, I black out and pass out for about five minutes when, I woke up. I lost my speech I was taken to the hospital they run an (MRI, EEG,EKG, CT,Chest Ext Blood work and a Swallow test) I lost my speech for about a week I am seeing my Physicians also a Neurologist's,ENT and a GI. I am still dizzy and have headache stomach still cramp and chest is tight. I need help  
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Avatar_f_tn
I too have stroke like symptoms, in fact one neurologist stated that I had a stroke, others say I have not. I have gone from a very hard working,active 51year old, to not being able to go out on my own , I  would also like help if anyone has any idea of what may be happening to me and others like me.
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451975_tn?1372332199
I finally saw the premier neurologist in Canada, Dr. King, in Halifax, N.S. He diagnosed me with Generalized Distonia a very rare, ( one in 6 million), illness that is caused by a notched gene that is heretidary and passed down, usually skipping a generation or two, through Eastern European Jewish families. Now, my father was pure Italian, first generation here in Canada with 11 siblings and no one showing any symptoms and my mother, pure English/Scottish, second generation in Canada with no known symptoms or illness such as this in her family. There has never been an Eastern European Jew in our family! Is that weird or what? Anyway, my daughter, who is 25 now was born perfectly healthy and at 6 wks., of age started displaying strange and terrifying neurological symptoms; seizures of all kinds, sometimes lasting for hours, loss of use of various parts of her body, inability to communicate, clumsy motor skills, her intelligence, though, was never impaired. She was classified a mystery child...a lot of good that did for us. Life was hell on wheels. We couldn't leave her with anyone but a registered nurse because we were never certain if, 'this would be the episode that killed her', we had to fight to have her placed in the regular school system because they didn't want the responsibility of 'what could possibly happen on school property', and so on. Other than the very unpredictable, and, very violent grande mal seizures, she came out of the episodes weary, sometimes dillusional, sometimes overly emotional and took a day or so to recover after the output of physical energy.

After reaching puberty and her period started, her symptoms lessened immensely. She was left with an intact and high intelligence, physically still a little clutzy, but able to read an entire text in an hour or less and describe it in it's entirety. She has a degree in Art History and another in Literature but....the big but, she suffers from a severe form of anxiety, agoraphobia, depression and will not any of her family in her life anymore. As her major caregiver and advocate when she was a child, this kills me, but, in a way, I am also relieved after 16 yrs., of anxiety and sitting on the edge of my seat wondering what the next phone call would entail. i.e. she's seizing in a ditch somewhere, she doesn't seem to be breathing, she is drunk, on medication and is non responsive...and on it went. I had to do the tough love thing for both of us. She insists now that I abandoned her when she needed me most.....
I became menopausal in 2006, my period ending in 2011, but, starting at the earlier date was the onset of all of the above symptoms. They slowly worsened to the point of me being bedridden for 2.5 yrs., unable to stand up and walk straight or walk without walking into walls, people, displays, etc. Then came stoke like symtoms (symptoms), slurred speech, not able to access words, attacks of weakness, alternating sides, and in the last two or three years, horrid attacks of muscular twisting, clenching, almost like a charlie horse roaming thoughout all major muscle groups, causing rigidity, retraction of tendons and muscles both upper and lower at the same time and now, my toes are curled under, my calves constantly taut and painful sometime causing me to walk without being able to bend my knees, gluts and quads now joining in, left hand becoming curled forward, tendons knotting in my palms, right shoulder encapsulated unable to move even though I undergo therapy, pain running down to elbow, wrist and fingers and worst of all in the last year, attacks of these spasms starting under my right breast running up through my chest, up my neck, shoulder, jaw, cleft area and ear. The pain absolutely wrenching, I am almost not able to move or breathe and it will hold me paralyzed on and off for 12 to 14 hrs., varying in serious intensity. I wish I could just die. Honestly, it feels like what I feel would be a heart attack but the emerg. Doc told me it was inflammation of the muscles that connect my rib cage from bottom to top and the resulting clenching tissue, nerves, etc. She said, excruciating but not life threatening. Give me a break! I have had 7 years of torture and now even with the aid of Steleevo, Propranolol, Sertraline, Valproic Acid, Clonapapam, and others, I still suffer immensely.
Even though I have asked not one Doc will do a Spinal Tap....I've undergone Psyschiatric treatment to see if there is an underlying cause, been told, 'maybe it was a stroke', but each Doc has a different opinion on that, who knows.
This past Christmas, I could see my self becoming skeletal, even less energy than before, I could barely get two or three sips of liquid down my throat, couldn't eat solids, bruises and cuts did not heal, if I fell I couldn't get up, etc. One night I woke up with immense pain in my abdomen and was rushed to hospital where they found I was so absessed in my intestinal track that I was close to death, needed emergency surgery, was too weak and infected, told me to get my details in order, and hope that the three types of antibiotics would clean me up enough for them to go in and surgically remove all the infected areas. They also told me to expect a colostomy when I woke up.
I told them, 'no bag'. I also asked if this was related to the Distonia. Again, split responses and opinions. After 15 days in hospital and flat lining twice, I was told that, yes, the Distonic attacks affected all bodily soft tissue and it was only a matter of time before I had another recurrance of D........, forgot it's name. At the end of my stay, the Interns came to see me and informed me that they had all decided that I didn't have Distonia! God, my mouth opened, I couldn't say a word. Where the heck does someone go after so many years of dire medical issues and still, yet, no diagnosis or proper treatment?
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I have heard about a type of migraine that is rare but is referred to as a, 'Stomach Migraine'....I wish I could tell you more. As far as Neurological illnesses are concerned, I think there is still alot that is simply unknown and you are only, VERY lucky, if you stumble upon a Doc that has seen your specific symptoms before and treated them with success. If you don't happen upon the right professional you join the leagues of patients like me and a million others whose lives have been horribly changed, their families lives interrupted, incomes lost and self worth sent flushing down the toilet as we are told, again and again, 'it's all in your head'. The medical community has a very difficult time with admitting or saying, 'we just don't know', 'go away'. Good luck and I am sorry for your pain and suffering. T.
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Avatar_f_tn
You didn't say what your stroke like symptoms are.  Could you say what they are and how long you have had them.  I would think that it would be helpful for you to have any rehab services that are given to stroke survivors.  I did have a major stroke, but have made great gains, but I still suffer disability from severe migraines that were caused by my stroke.  Let me know.
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Avatar_f_tn
my symptoms were slurred slow speech, mouth numbness and dizziness. I have been left with dizziness, loss of concentration , muddled speech when tired. I have asked for rehab but  as I had my stroke last October I can  no longer have any help. I have lost my job due to the fact that I also have a problem with spacial awareness and can't drive as I feel unsafe, having to pull over when a car comes towards me. I am happy to hear that you are progressing as am I however very slowly.  
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sorry forgot to say I have also been left with weakness in my left arm and leg and tend to lean to the left when walking
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Avatar_f_tn
Sorry to hear that you can no longer get rehab or physical therapy.  Did you get any after your stroke?  It can make a big difference if you can continue to do the exercises that they gave you.  If you didn't get any rehab, then shame on everyone for not making sure that you would get it.  Someone after a stroke is not able to handle things very well.  Let me know.
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No I had no rehab, only some physio  in March that being 5months after my stroke.
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Avatar_f_tn
What I meant by rehab was physical therapy.  Is that what you mean by physio?  And by physical therapy I mean did they give you exercises to do?  If so, they can still help you. And you could still make progress after 5 months.  I went back 18 months later after my stroke and got more progress from more physical therapy.  It doesn't sound like you got very much of it though.  Insurance wouldn't cover you?  Or what was the problem?  I don't understand the health system in the United Kingdom. Why can't you get any more physical therapy in the future?  In any case, you will see more progress as the years go by.  A friend of mine had a stroke 8 years ago, and her speech has improved greatly through the years.  My stroke was 5 years ago, and my word finding ability has improved significantly from just a year ago.  I still have some weakness on the right side of my body, but not a lot.  Although I can barely hand write. Have difficulty typing this.  I still have many other disabilities caused by the stroke, but I've learned to cope with them.  So don't give up.  Things will get better.  You take care.  
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Its all started nov 2012 my left head start to feel the pain,so i go to opta coz they say maybe its vision problem then my opta said i have astigmatism,so i wore glasses after a month the headache still there they check again my eye grade is high now.but still have headache daily then i go to family doctor couz i have pain in my neck he refferred me to a bone specialist ,then he told me to have an xray in my head and neck..the result in the head was nothing but in the neck theres a spasm muscle so they said i need to go to therapy..but the therapy wont get away the pain..i go to neurologist expalain it all then he said it was a migraine..many meds i lv been taking still theres pain 2 doctors again iv seen and they said because of the spasm it affects the head because of the muscle in the head.it been many months still they dont want me to go a test like ct scan..what should i do..i feel the headache sometimes numbness in head and face now i feel so weak..pls help
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Avatar_f_tn
Did you ever try the physical therapy?  That gave me tremendous relief after my stroke. But it doesn't sound like you've had a stroke.  What you describe are common side effects of migraines.  And if you did have a stroke, they can't do anything for you about it now.  You need to get to the ER within 3 hours.  Still you are in a lot of pain and need help with that.  If the physical therapy doesn't help, then I would see about going to a pain management doctor.  For example, my migraines are caused by my neck pain and extreme tension in both my neck and shoulders.  What helps me greatly are nerve block and trigger point injections given by a pain management neurologist. That is something that might help you.  And if the meds aren't helping you, then if you have headaches at least 14 days a month, then your chances of having Botox injections help your headaches are very good.  Let me know if you've tried anything that I've talked about, including the physical therapy.  I also use physical therapy almost every day to help with my migraines.  I had severe 24/7 migraines following a major stroke that began with paralysis and inability to speak or understand people.  I was a wreck.  So you deserve more help.  I hope that you get it.
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Avatar_m_tn
Actually I just went through the whole scenario that you described. Only my ordeal became totally out of control with Misdiagnosis's that put into trauma resuscitation immediately and into a drug induced coma in ICU... They thought it was a STROKE and it was NOT, I had a severe reaction to the TPA administered. I found out 10 days later from the infectious disease Dr. that MRSA in the lungs mimics a stroke almost exact... There is Much, Much More to my case, as far as the hospitals negligence that gave me even more concerning problems, but this is to help you and what you may have. I would have a simple lung test to see if you are a carrier of MRSA and simply do the 6 week or more Antibiotic regimen if the culture shows that this is what you have...      
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