Aa
Migraine vs. TIA
“Migraine” for me
I wake up with severe headache, vomiting, light and noise sensitivity, will last 14/16 hours without meds (Immitrex, Reglan, Fiorinal). There is no numbness anywhere, no visual problems except for the light sensitivity. When it stops I will sleep for entire next day and there will still be a throbbing pain when I move my head throughout the next day.
“TIA” or other type of headache I get
Awake, alert, calm, vision is suddenly different, partially obscured by colored, crystal like movement at the outside of my vision, the visual effect seems to close in until my vision is totally obscured. Pain in head starts at some point and is usually on one side only, mostly right. During the most recent incidents the pain is mostly on the right, lower, back section of my head and radiates down my neck on the right. Sometimes this is all that happens but more often I start to get numbness in my fingers, then hand, normally on one side, but it has happened on both sides. During some episodes my face, teeth, and tongue will get numb. I lose my ability to talk and it feels as if my throat is numb and closing and I feel as if I can’t breathe. I have, during recent past episodes lost control of my arms and my ability to walk. I remain cognizant of what is being said and done around me at all times. I take the usual migraine meds listed above, but if the numbness progresses to my face and throat I ask to be taken to the hospital. I have suffered from panic attacks for years and these episodes withj the fear of not being able to breath usually bring that on which exacerbates the issues.
For the past 4 days I have had a headache at the lover, back of my head which is radiating down my neck. I do not have nausea or auras at this moment. I have had two recent MRI of my brain, the first,in December, followed an episode that I went to the ER for: unable to walk, speak or control the movement in my arms, this all happened within 5 minutes of the start of the aura and resolved in 2 hours. This MRI states "This patient has had a possible stroke" "Incidental note made of empty cella." The 2nd MRI was done last week on the 6th of May. I have not seen this report yet, but was told by a doctor that there is only "old" stroke damage? A nerve conduction test was preformed on my forearms and lower legs and I was told there is nothing wrong with me. He surmised that I am hyperventilating and that is what is causing my "migraines". He did not have any opinion about my different type of headaches. He did not seem to listen when I explained that the TIA type episodes are starting when I am completely relaxed, watching television, reading, chatting with company or going up to bed, and the migraine episodes always start when I wake up. He did not offer me any help and dismissed everything I said. He did not address my current neck pain/headache. My question is what do I do now? See another doctor? What type of doctor? I'm really having a hard time living like this.
I wake up with severe headache, vomiting, light and noise sensitivity, will last 14/16 hours without meds (Immitrex, Reglan, Fiorinal). There is no numbness anywhere, no visual problems except for the light sensitivity. When it stops I will sleep for entire next day and there will still be a throbbing pain when I move my head throughout the next day.
“TIA” or other type of headache I get
Awake, alert, calm, vision is suddenly different, partially obscured by colored, crystal like movement at the outside of my vision, the visual effect seems to close in until my vision is totally obscured. Pain in head starts at some point and is usually on one side only, mostly right. During the most recent incidents the pain is mostly on the right, lower, back section of my head and radiates down my neck on the right. Sometimes this is all that happens but more often I start to get numbness in my fingers, then hand, normally on one side, but it has happened on both sides. During some episodes my face, teeth, and tongue will get numb. I lose my ability to talk and it feels as if my throat is numb and closing and I feel as if I can’t breathe. I have, during recent past episodes lost control of my arms and my ability to walk. I remain cognizant of what is being said and done around me at all times. I take the usual migraine meds listed above, but if the numbness progresses to my face and throat I ask to be taken to the hospital. I have suffered from panic attacks for years and these episodes withj the fear of not being able to breath usually bring that on which exacerbates the issues.
For the past 4 days I have had a headache at the lover, back of my head which is radiating down my neck. I do not have nausea or auras at this moment. I have had two recent MRI of my brain, the first,in December, followed an episode that I went to the ER for: unable to walk, speak or control the movement in my arms, this all happened within 5 minutes of the start of the aura and resolved in 2 hours. This MRI states "This patient has had a possible stroke" "Incidental note made of empty cella." The 2nd MRI was done last week on the 6th of May. I have not seen this report yet, but was told by a doctor that there is only "old" stroke damage? A nerve conduction test was preformed on my forearms and lower legs and I was told there is nothing wrong with me. He surmised that I am hyperventilating and that is what is causing my "migraines". He did not have any opinion about my different type of headaches. He did not seem to listen when I explained that the TIA type episodes are starting when I am completely relaxed, watching television, reading, chatting with company or going up to bed, and the migraine episodes always start when I wake up. He did not offer me any help and dismissed everything I said. He did not address my current neck pain/headache. My question is what do I do now? See another doctor? What type of doctor? I'm really having a hard time living like this.
You are doing a great job of being proactive with your doctors! If only they would do as well. It sounds like you have a very supportive husband too.
I'm afraid I have almost no experience with medications, their side effects, damage, etc. as I try to avoid them in favor of nutritional healing (organic acids tests are very helpful!). My mom has had trouble with blood pressure med. causing numbness. The doc told her it was the med that caused it.
My son's pituitary gland was squashed flat by a tumor, so he is on replacement hormones, but it's not enough to fix the damage that was done. I can tell you that forehead sweats are a sign of tumors. I don't mean all forehead sweating is, just that it could be.
Have you had recent testing for TSH and all thyroid hormones? Your regular doc should have done this already. Excessive sleeping is a sign of hypothyroidism.
Both tumors and medications are known for causing all sorts of autonomic dysfunction. Cleveland Clinic has one of the few Autonomic Disorders Clinics in the country. See if you can get a referral if your docs don't know what else to do at some point.
i suspect your meds are causing at least some of your symptoms, but I really don't know. I DO know that psychiatric meds can cause terrible side effects, especially if you have underlying undiagnosed hormone or neurological disease, so be very careful if you go to Psych. doc. Ask your docs to be honest with you about med. side effects.
Sometimes it helps to keep a symptom journal - keep track of every med you're taking, how much, time of day, time of day and severity of symptoms, blood pressure readings, etc. It seems to help docs take you more seriously when it's all written down, even if you have to insist that they look at it. This helped my mom.
If I think of anything that might help, I'll post again. Please try not to worry too much, it makes everything feel worse. Do what you can to keep your heart light.
Best wishes,
Enzy
I'm afraid I have almost no experience with medications, their side effects, damage, etc. as I try to avoid them in favor of nutritional healing (organic acids tests are very helpful!). My mom has had trouble with blood pressure med. causing numbness. The doc told her it was the med that caused it.
My son's pituitary gland was squashed flat by a tumor, so he is on replacement hormones, but it's not enough to fix the damage that was done. I can tell you that forehead sweats are a sign of tumors. I don't mean all forehead sweating is, just that it could be.
Have you had recent testing for TSH and all thyroid hormones? Your regular doc should have done this already. Excessive sleeping is a sign of hypothyroidism.
Both tumors and medications are known for causing all sorts of autonomic dysfunction. Cleveland Clinic has one of the few Autonomic Disorders Clinics in the country. See if you can get a referral if your docs don't know what else to do at some point.
i suspect your meds are causing at least some of your symptoms, but I really don't know. I DO know that psychiatric meds can cause terrible side effects, especially if you have underlying undiagnosed hormone or neurological disease, so be very careful if you go to Psych. doc. Ask your docs to be honest with you about med. side effects.
Sometimes it helps to keep a symptom journal - keep track of every med you're taking, how much, time of day, time of day and severity of symptoms, blood pressure readings, etc. It seems to help docs take you more seriously when it's all written down, even if you have to insist that they look at it. This helped my mom.
If I think of anything that might help, I'll post again. Please try not to worry too much, it makes everything feel worse. Do what you can to keep your heart light.
Best wishes,
Enzy
Hi, thank you so much for your answers, I believe you are right. Here's an example of the problems I'm having with the doctors. About six weeks ago, maybe more, I started sweating at night, only from my head, it just pours off me. I wake up soaked to the point I have to change clothes, pillow, etc and whatever ear is up is filled with sweat, this is how bad it is, this will happen 2 or 3 times a night, also about that time I started have "hot flashes" and extremely cold times, shivering and my fingers and feet feel frozen and numb during the day. I am 8 years past surgical menopause so I can rule that out. About this time my RLS got worse and now I'm having a problem with my arms flailing and muscles twitching all over my body when I lie down for bed.. I take Requip and Klonipin for that, but it's no longer working like it used to. Right away when I go to bed my entire body breaks out in a sweat, especially my legs, they feel hot to the touch, then my entire body, this will go away after a time, maybe 20 minutes without blankets or anything covering me. this is all happening while I'm STILL having this stupid headache in the back, lower, right section of my head and neck. I have not had another TIA or Migaine or whatever they want to call them, but instead have shooting bright lights in my eyes like I've been hit in the head.. Oh, and I'm sleeping all night, 9 10 hours and most of the day, 14 to 18 hours or so out of 24. No energy and I just don't seem to care about anything. I have no desire to eat food and I'm forcing myself and my family is helping to make myself eat.
So here's my point about all this new malarkey and the doctors...I went to the Primary, I've been with for 10+ years, I asked her at two different appointments and she says talk to the Rheumy, also 10+ years, about it, he says talk to the Neuro about it which I did with the above Neuro, he said that's something I should speak to my Primary about and would not let me continue the conversation. I brought it up again during the second appointment with the Neuro, who asked me to tell him my symptoms while he was doing my EMG. He completely blew off everything including the MRI reports and this is the doctor who said I am having "headaches" because I am hyperventilating and I smoke. So what now my friends?
I have been to an Opthamalogist who did a complete workup, I do see someone at least every year because I take Plaquanil for Lupus and I expalined what has been happening so she did a very complete exam and said everything was fine except that I do need a prescription change which she gave me.
The Endo will not see me without a referral with some explanation of what a Neuro thinks the problem is, even though my Rheum told them he suspected Hypothalimic Tumor. My original Neuro, who was treating me for the Migraines last year still can not see me until late August, I am working through the Omsbudsman office of the Cleveland Clinic to try and get them to help me get in sooner. The first Neuro I saw told me I was a stupid woman and that I could not possibly understand what my (first) MRI meant, I was in tears in 5 minutes and out the door in 5 1/2, no one is permitted to treat me like that or speak to me like that. He said these things in front of my husband and seems to be under the impression that I am going to pay him for insulting me. The second ordered the second MRI and is the doctor from my original message, that was last Monday. By the way, he would not give ANY thought to hypothanmic tumor, would not discuss it. I called and asked for my MRI report, which I still have not seen, as well as the ultrasound of my neck, the EMG report and any narratives from the appoinments, that was last Monday, I called again yesterday, was put on hold and then told he wasn't done and once they had a page count I could come down and pay the per page charge and get my copies. Also last Monday I called the Cleveland Clinic Neurological center at Lakewood Hospital to make an appt. Just a side note...all of these Neuros have been associated with the Cleveland Clinic, almost EVERY specialist in this area is, so guess where I live. The intake/ appointment person was so overwhelmed with what I told her that she asked that I get the CD of my MRI to her so she could have someone in charge look at it and decide who to make my appt. with. Apparently there are many Neuro doctors with sub-specialties, a good thing for me I think. My husband drove it out to her immediately...we're 50 minutes out from them, but he didn't want to wait for it to be mailed. I didn't hear from them last week so I called yesterday and the person I spoke to had left for the day and a very nice young lady said she would leave a note and if I did not hear from them by 10 this morning to call back. So here I sit waiting for a call. I'm extremely depressed, I've been crying since I woke up, I've been like this for weeks and typing this all out hasn't helped, but once again when I saw my primary two weeks ago and asked her to increase my Celexa, currently 40mg.a day, or change my med she said no, no reason, just no.
So Enzy and Dr. Santos as you can see I am desparately trying to be proactive. I am hitting brick walls a rate of one a day it seems. I did do my own research, out of desparation, and I believe my new symptoms may be Hypohidrosis and I can rule out some of the causes like pregnancy and menopause, but I can't rule out thyroid, RA (I'm already diagnosed with that), stroke (I had one in December, no one seems concerned obviously) and cancer. I also now know that Hypothalimic Tumors in adults are usually bad and can result from mestastisized (sorry about the spelling) cancer in another part of the body. So, again, I'll sit here, wait for a call and hope I don't stroke out or that I don't have cancer in my brain. I don't know what else to do. I am going to try and find a Phsychiatrist to see, of course I'm sure I'll need a referral, but I need to talk to someone about this crushing feeling of impending doom and even though you guys have been great you can't change my meds for me.
Anymore ideas and please tell me what you think about the research I've done if you can? I very much appreciate your input, more than you can know.
So here's my point about all this new malarkey and the doctors...I went to the Primary, I've been with for 10+ years, I asked her at two different appointments and she says talk to the Rheumy, also 10+ years, about it, he says talk to the Neuro about it which I did with the above Neuro, he said that's something I should speak to my Primary about and would not let me continue the conversation. I brought it up again during the second appointment with the Neuro, who asked me to tell him my symptoms while he was doing my EMG. He completely blew off everything including the MRI reports and this is the doctor who said I am having "headaches" because I am hyperventilating and I smoke. So what now my friends?
I have been to an Opthamalogist who did a complete workup, I do see someone at least every year because I take Plaquanil for Lupus and I expalined what has been happening so she did a very complete exam and said everything was fine except that I do need a prescription change which she gave me.
The Endo will not see me without a referral with some explanation of what a Neuro thinks the problem is, even though my Rheum told them he suspected Hypothalimic Tumor. My original Neuro, who was treating me for the Migraines last year still can not see me until late August, I am working through the Omsbudsman office of the Cleveland Clinic to try and get them to help me get in sooner. The first Neuro I saw told me I was a stupid woman and that I could not possibly understand what my (first) MRI meant, I was in tears in 5 minutes and out the door in 5 1/2, no one is permitted to treat me like that or speak to me like that. He said these things in front of my husband and seems to be under the impression that I am going to pay him for insulting me. The second ordered the second MRI and is the doctor from my original message, that was last Monday. By the way, he would not give ANY thought to hypothanmic tumor, would not discuss it. I called and asked for my MRI report, which I still have not seen, as well as the ultrasound of my neck, the EMG report and any narratives from the appoinments, that was last Monday, I called again yesterday, was put on hold and then told he wasn't done and once they had a page count I could come down and pay the per page charge and get my copies. Also last Monday I called the Cleveland Clinic Neurological center at Lakewood Hospital to make an appt. Just a side note...all of these Neuros have been associated with the Cleveland Clinic, almost EVERY specialist in this area is, so guess where I live. The intake/ appointment person was so overwhelmed with what I told her that she asked that I get the CD of my MRI to her so she could have someone in charge look at it and decide who to make my appt. with. Apparently there are many Neuro doctors with sub-specialties, a good thing for me I think. My husband drove it out to her immediately...we're 50 minutes out from them, but he didn't want to wait for it to be mailed. I didn't hear from them last week so I called yesterday and the person I spoke to had left for the day and a very nice young lady said she would leave a note and if I did not hear from them by 10 this morning to call back. So here I sit waiting for a call. I'm extremely depressed, I've been crying since I woke up, I've been like this for weeks and typing this all out hasn't helped, but once again when I saw my primary two weeks ago and asked her to increase my Celexa, currently 40mg.a day, or change my med she said no, no reason, just no.
So Enzy and Dr. Santos as you can see I am desparately trying to be proactive. I am hitting brick walls a rate of one a day it seems. I did do my own research, out of desparation, and I believe my new symptoms may be Hypohidrosis and I can rule out some of the causes like pregnancy and menopause, but I can't rule out thyroid, RA (I'm already diagnosed with that), stroke (I had one in December, no one seems concerned obviously) and cancer. I also now know that Hypothalimic Tumors in adults are usually bad and can result from mestastisized (sorry about the spelling) cancer in another part of the body. So, again, I'll sit here, wait for a call and hope I don't stroke out or that I don't have cancer in my brain. I don't know what else to do. I am going to try and find a Phsychiatrist to see, of course I'm sure I'll need a referral, but I need to talk to someone about this crushing feeling of impending doom and even though you guys have been great you can't change my meds for me.
Anymore ideas and please tell me what you think about the research I've done if you can? I very much appreciate your input, more than you can know.
MEDICAL PROFESSIONAL
Hi,
How are you? Any news from your appointment? I agree with Enzy that you should be more proactive with your doctors about this. Take care and hope to hear form you soon.
How are you? Any news from your appointment? I agree with Enzy that you should be more proactive with your doctors about this. Take care and hope to hear form you soon.
Yeah, don't waste time with neurologist. Make an appointment if you can, to speak directly with a neurosurgeon at a pituitary center. Tell them you have an Empty Sella on MRI when you call.
Push for this appoint. asap. With the symptoms you are having, delay could be disastrous, (as in further hypothalamic damage).
Best Wishes,
Enzy
Push for this appoint. asap. With the symptoms you are having, delay could be disastrous, (as in further hypothalamic damage).
Best Wishes,
Enzy
MEDICAL PROFESSIONAL
Hi,
I'm so sorry to hear what you have been through for the past few months. With regards to the rude doctors that dismissed you and calling you that, I think you should inform their head so that proper actions be taken. I know how hard it is to be in the dark and not knowing the cause but hang on and have faith. Have an open communication line with your doctors and do not be afraid to ask for clarifications. Knowing what is happening even your management plan is already a step in being in control. I sincerely hope you get the appointment soon. Take care and do keep us posted.
I'm so sorry to hear what you have been through for the past few months. With regards to the rude doctors that dismissed you and calling you that, I think you should inform their head so that proper actions be taken. I know how hard it is to be in the dark and not knowing the cause but hang on and have faith. Have an open communication line with your doctors and do not be afraid to ask for clarifications. Knowing what is happening even your management plan is already a step in being in control. I sincerely hope you get the appointment soon. Take care and do keep us posted.
Thank you for your answer. No, they have not called me back yet to schedule my appointment. I will be calling them today. I am on Mobic and 16 other meds at the time. High dose pain-killers, Plaquenil, etc. Lupus, Fibro, RA, RLS, multiple herniated disks and compression fractures. My tolerance for doctors and I'm afraid my life are wearing very thin.
Enzy, my Rhuem did send me to an Endo, after his nurse showed him the MRI. He just had his nurse hand me a paper with a number, didn't talk to me. When I called them they wanted to know why I needed to see one of the doctors, I was, of course, clueless, so the nurse called my Rhuem then called me back and told me that he believes I have a hypothalimic tumor. That was VERY unpleasant to hear, like I wasn't depressed enough. Endo says I have to see a Neuro first, several months later and I'm still trying, the Neuros I have seen have been rude, didn't listen and have dismissed me...one actually called me a "stupid woman". I'm hoping I get this appt. and we get this resolved soon...I hurt.
Enzy, my Rhuem did send me to an Endo, after his nurse showed him the MRI. He just had his nurse hand me a paper with a number, didn't talk to me. When I called them they wanted to know why I needed to see one of the doctors, I was, of course, clueless, so the nurse called my Rhuem then called me back and told me that he believes I have a hypothalimic tumor. That was VERY unpleasant to hear, like I wasn't depressed enough. Endo says I have to see a Neuro first, several months later and I'm still trying, the Neuros I have seen have been rude, didn't listen and have dismissed me...one actually called me a "stupid woman". I'm hoping I get this appt. and we get this resolved soon...I hurt.
MEDICAL PROFESSIONAL
Hi,
How are you? Were you able to have your appointment scheduled? Rest, ice packs, and medications such as muscle relaxants and anti-inflammatory medications may help provide relief. You should have a copy of your previous MRI and further testing and evaluation should be done if the sella indeed was empty. Take care and do keep us posted.
How are you? Were you able to have your appointment scheduled? Rest, ice packs, and medications such as muscle relaxants and anti-inflammatory medications may help provide relief. You should have a copy of your previous MRI and further testing and evaluation should be done if the sella indeed was empty. Take care and do keep us posted.
You need to see an endocrinologist with expertise in pituitary disorders. Most of your symptoms sound like hormone imbalance to me. Every pit patient needs a team of doctors - endo, neuro, ophthalmologist, etc.
Sounds like you may finally be getting better attention for this. I do wish you the best of luck! Let us know what the new doc says.
Enzy
Sounds like you may finally be getting better attention for this. I do wish you the best of luck! Let us know what the new doc says.
Enzy
Thank you for answering. I am so very lost right now. No, no one has addressed this at all. My Rheumy believes that I have a hypothalimic tumor but the biggest issue is that I'm having a hard time even getting an appt. with my original Neuro...they are telling me late August even after I explained what has been happening. Garrrrr, this is the Cleveland Clinic and no one is listening. I made some calls yesterday and did manage to get someone to listen at another hospitals neuro dept., they now have my MRI CD and apparently the director of this office will review it and decide which doctor I should see. The appt./intake person was so overwhelmed by all that's happening to me that she didn't know who to place me with. Hopefully they will call tomorrow with an appointment and hopefully it will be with someone who will listen. Wish me luck and thanks again.
You can have severe pituitary gland dysfunction with Empty Sella Syndrome, causing many symptoms from hormone imbalance. Did your doctors test all of your pituitary hormones yet? This is not something to ignore!
I'm very sorry to hear that your doctor was not understanding, and that he did not address all of your medical concerns. I would recommend that you find a new doctor, preferably a neurologist as they are the best trained to treat and deal with migraine. The neurologist should be able to tell if you really had a stroke, or if it was simply a migraine that mimicked a stroke, as that can happen during a TIA attack. I would also recommend seeing a cardiologist.
I also get TIA, and can lose my ability to talk, walk, etc. I was also losing consciousness randomly up to 10x a day because of the TIA. I finally went to see a cardiologist, at my neurologist's recommendation, and had a TEE performed. The TEE (Trans-Esophogial Echocardiogram) is where they inject dye into your bloodstream and send a camera down your throat to do what is basically an ultrasound of your heart from the inside to look for a PFO (a hole in your heart valve left over from the umbilical cord that is usually causes no problems, but can lead to strokes). I did not have a PFO, but it would make sense for you to get tested as you have been told that you have had a stroke. If you do have a PFO, they can perform a (from what I understand) minimally invasive surgery to close the extra hole, and that this surgery can not only prevent future strokes, but can help cure migraines.
If you don't have a PFO, you might want to have a tilt-table test to rule out other heart problems. I had a tilt-table test and it came back saying that I have an autonomic disorder called vasovagal syncope where my blood vessles will randomly dialate, causing my blood pressure to plummit and me to lose consciousness. I'm now on Norpace, a heart medicine, and have only passed out twice in the past seven years.
Good luck and keep us posted,
~Dame
I also get TIA, and can lose my ability to talk, walk, etc. I was also losing consciousness randomly up to 10x a day because of the TIA. I finally went to see a cardiologist, at my neurologist's recommendation, and had a TEE performed. The TEE (Trans-Esophogial Echocardiogram) is where they inject dye into your bloodstream and send a camera down your throat to do what is basically an ultrasound of your heart from the inside to look for a PFO (a hole in your heart valve left over from the umbilical cord that is usually causes no problems, but can lead to strokes). I did not have a PFO, but it would make sense for you to get tested as you have been told that you have had a stroke. If you do have a PFO, they can perform a (from what I understand) minimally invasive surgery to close the extra hole, and that this surgery can not only prevent future strokes, but can help cure migraines.
If you don't have a PFO, you might want to have a tilt-table test to rule out other heart problems. I had a tilt-table test and it came back saying that I have an autonomic disorder called vasovagal syncope where my blood vessles will randomly dialate, causing my blood pressure to plummit and me to lose consciousness. I'm now on Norpace, a heart medicine, and have only passed out twice in the past seven years.
Good luck and keep us posted,
~Dame
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