Aa
Another Neuro visit / waste of time / Disaster!
Hi all good to be back and reading up on everyone.
I have been a long time coming back to visit here, have been trying to focus on some study and trying not to be completely consumed by my problems. A psychologist suggested that my "anxiety" was the cause of my symptoms and that if I spend too much time on the internet researching MS symptoms and I will convince myself that I have it. So, trying to be sensible, non-neurotic etc I have purposely stayed away.....until now because I had another disaster of a visit with the Neurologist. Please excuse me if this is a little long, I am just ready to scream!
I have kept all my previous symptoms referred to by the Neuro as a "conundrum" and have just been trying to cope on a daily basis. My burning pain has now crept up into my pelvic region and lower back, absolutely awful, it feels like I am on fire. My GP gave me a referral to a pain clinic at a large public hospital and this is no surprise.....appointment is for March 2009! Meanwhile I am taking panadeine forte for pain but it doesn't seem to help the most terrible burning pain. My GP is not authorized to prescribe Neurontin and also would not overstep the Neurologist anyway. I can only get it from a specialist here in Australia and because I am on a pension I have to go through the public system and would not be able to afford the drug privately. So the limbo continues.....
About 3 months ago I started to develop some mild dizziness which only lasted a minute or so and was very random so I really didn't take a lot of notice, just kept going and didn't do anything about it. About 2 months ago I had a full episode of vertigo. I was in the supermarket about half way through the shopping, stopped to pick an item off the shelf to read the label, looked down and the floor was moving like an ocean sea swell. I honestly thought I was going to pass out, I felt nauseated as well. I hung onto the trolley for dear life and closed my eyes and waited hoping that the feeling would pass. It did eventually and I very carefully kept shopping. Then it happened again, not so severe this time but none the less the floor moved. I cut my shopping short and went home straight away and rested. The last thing I want to do is fall over in the supermarket and make a spectacle of myself, how embarrassing!
This has now become a daily occurrence and seems to be getting worse and increasing in intensity. The last weekend it kept me in bed because every time I got up and moved around or sat at the computer I would feel dizzy and sick. It just so happened that my next appointment with the Neuro was coming up on the Wednesday so I decided it would be best not to bother my GP and save it up for the so called "expert" (ha!)
I was dreading this appointment because I would have to tell him about the vertigo. Also I didn't think that I had told him about my heat sensitivity which wipes me out, I just can't stand in the sun at all, it makes me feel weak and sick. So the conversation went something like this:
Neuro: Have you had any new symptoms since I last saw you?
Me: Yes I have been feeling dizzy, light headed with some nausea also
Neuro: How often does this happen?
Me: It is random, I'm not really sure more often than before
Neuro: So the room, does it spin or do you just feel light headed?
Me: No, I don't remember the room spinning so more light headed like I am going to faint
Neuro: Umm, are you on any new medication? ( He already knows everything I take as he can access my file on the computer being a public patient )
Me: No, I don't think so... we then go through the list of medication I am taking.
Me: By the way, I don't drink alcohol any more and it has not made any difference to my symptoms
Neuro: Well it wouldn't it takes 2 years. ( ???? don't know what that means )
Neuro: How many Panadeine Forte are you taking?
Me: Maximum of 6 per day for pain but it isn't helping the burning pain, sometimes I just take some panadol instead
Neuro: That's a lot of Panadeine Forte, you need to stop taking them ( ? )
Neuro: I think you should try Tegretol
Me: I would rather take Neurontin, there are some really awful side effects, I read up on this drug and discussed it with my GP and I am on the waiting list for the pain clinic
Neuro: It is very expensive but the pain clinic will want you to take Tegretol first so I think you should try it
Me: OK then I'll try it
Neuro: One of the side effects is it makes you dizzy ( he laughs )
( He then checks my blood pressure as he is convinced that my hypertension is causing everything and he finds out that MY BLOOD PRESSURE IS NOT CAUSING MY DIZZINESS!)
Me: I have become very heat sensitive, it makes me feel sick and weak and I have to lie down, can't stand getting hot
Neuro: Don't go out in the sun! ( what a stupid statement )
Neuro: Anything else?
Me: My mind goes blank and I can't think of anything else
Me: What about this dizziness and the nausea, what can I do about that?
Neuro: Go and see your GP if it continues.......
Neuro: I will see you in 12 months ( he shakes my hand dead fish style and almost shoves me out the door )
I am so upset I go home and cry for hours. I then make an appointment to see my GP. She is horrified and says if I presented with symptoms like that she would send me to a Neurologist!
Well, we have a bit of a discussion about him so then she says she will ring him and ask him what to do. I can only hear one side of the conversation but she says "Well, to reach a diagnosis I would send her to a Neurologist or order an MRI scan but I am not authorised to do that" When she gets off the phone I ask her what he said and he told her " She doesn't need another MRI and well, if the dizziness continues I will see her before 12 months please send me a referral"
My GP is furious but doesn't say anything to me further about him. I beg her to refer me to someone else but she won't after the last 2nd opinion which turned into a circus. My file is accessible anywhere in Australia because I am a public patient so they will know I have been to him.
What am I to do...?
What do you think?
Personally I think I should have had another MRI done in case there are new lesions.
This neuro is a complete waste of time and space. I don't care that he is a professor. He has no communication skills, talks down to me all the time, blames everything except MS and virtually accuses me of making up my symptoms. If he would get his head out of the text books and the teaching side of things perhaps he would make a better specialist. His specialty is teaching out of a text book not diagnosis I think.
I am just shattered. The thought of having to go back to him over my vertigo is almost too much to take.
I hope this wasn't too long.
I have to get tea ready now so will check back in a little later or tomorrow, I am very tired. My GP gave me some medication for the vertigo so I don't feel too bad but as she said that won't fix my problem!
I have been a long time coming back to visit here, have been trying to focus on some study and trying not to be completely consumed by my problems. A psychologist suggested that my "anxiety" was the cause of my symptoms and that if I spend too much time on the internet researching MS symptoms and I will convince myself that I have it. So, trying to be sensible, non-neurotic etc I have purposely stayed away.....until now because I had another disaster of a visit with the Neurologist. Please excuse me if this is a little long, I am just ready to scream!
I have kept all my previous symptoms referred to by the Neuro as a "conundrum" and have just been trying to cope on a daily basis. My burning pain has now crept up into my pelvic region and lower back, absolutely awful, it feels like I am on fire. My GP gave me a referral to a pain clinic at a large public hospital and this is no surprise.....appointment is for March 2009! Meanwhile I am taking panadeine forte for pain but it doesn't seem to help the most terrible burning pain. My GP is not authorized to prescribe Neurontin and also would not overstep the Neurologist anyway. I can only get it from a specialist here in Australia and because I am on a pension I have to go through the public system and would not be able to afford the drug privately. So the limbo continues.....
About 3 months ago I started to develop some mild dizziness which only lasted a minute or so and was very random so I really didn't take a lot of notice, just kept going and didn't do anything about it. About 2 months ago I had a full episode of vertigo. I was in the supermarket about half way through the shopping, stopped to pick an item off the shelf to read the label, looked down and the floor was moving like an ocean sea swell. I honestly thought I was going to pass out, I felt nauseated as well. I hung onto the trolley for dear life and closed my eyes and waited hoping that the feeling would pass. It did eventually and I very carefully kept shopping. Then it happened again, not so severe this time but none the less the floor moved. I cut my shopping short and went home straight away and rested. The last thing I want to do is fall over in the supermarket and make a spectacle of myself, how embarrassing!
This has now become a daily occurrence and seems to be getting worse and increasing in intensity. The last weekend it kept me in bed because every time I got up and moved around or sat at the computer I would feel dizzy and sick. It just so happened that my next appointment with the Neuro was coming up on the Wednesday so I decided it would be best not to bother my GP and save it up for the so called "expert" (ha!)
I was dreading this appointment because I would have to tell him about the vertigo. Also I didn't think that I had told him about my heat sensitivity which wipes me out, I just can't stand in the sun at all, it makes me feel weak and sick. So the conversation went something like this:
Neuro: Have you had any new symptoms since I last saw you?
Me: Yes I have been feeling dizzy, light headed with some nausea also
Neuro: How often does this happen?
Me: It is random, I'm not really sure more often than before
Neuro: So the room, does it spin or do you just feel light headed?
Me: No, I don't remember the room spinning so more light headed like I am going to faint
Neuro: Umm, are you on any new medication? ( He already knows everything I take as he can access my file on the computer being a public patient )
Me: No, I don't think so... we then go through the list of medication I am taking.
Me: By the way, I don't drink alcohol any more and it has not made any difference to my symptoms
Neuro: Well it wouldn't it takes 2 years. ( ???? don't know what that means )
Neuro: How many Panadeine Forte are you taking?
Me: Maximum of 6 per day for pain but it isn't helping the burning pain, sometimes I just take some panadol instead
Neuro: That's a lot of Panadeine Forte, you need to stop taking them ( ? )
Neuro: I think you should try Tegretol
Me: I would rather take Neurontin, there are some really awful side effects, I read up on this drug and discussed it with my GP and I am on the waiting list for the pain clinic
Neuro: It is very expensive but the pain clinic will want you to take Tegretol first so I think you should try it
Me: OK then I'll try it
Neuro: One of the side effects is it makes you dizzy ( he laughs )
( He then checks my blood pressure as he is convinced that my hypertension is causing everything and he finds out that MY BLOOD PRESSURE IS NOT CAUSING MY DIZZINESS!)
Me: I have become very heat sensitive, it makes me feel sick and weak and I have to lie down, can't stand getting hot
Neuro: Don't go out in the sun! ( what a stupid statement )
Neuro: Anything else?
Me: My mind goes blank and I can't think of anything else
Me: What about this dizziness and the nausea, what can I do about that?
Neuro: Go and see your GP if it continues.......
Neuro: I will see you in 12 months ( he shakes my hand dead fish style and almost shoves me out the door )
I am so upset I go home and cry for hours. I then make an appointment to see my GP. She is horrified and says if I presented with symptoms like that she would send me to a Neurologist!
Well, we have a bit of a discussion about him so then she says she will ring him and ask him what to do. I can only hear one side of the conversation but she says "Well, to reach a diagnosis I would send her to a Neurologist or order an MRI scan but I am not authorised to do that" When she gets off the phone I ask her what he said and he told her " She doesn't need another MRI and well, if the dizziness continues I will see her before 12 months please send me a referral"
My GP is furious but doesn't say anything to me further about him. I beg her to refer me to someone else but she won't after the last 2nd opinion which turned into a circus. My file is accessible anywhere in Australia because I am a public patient so they will know I have been to him.
What am I to do...?
What do you think?
Personally I think I should have had another MRI done in case there are new lesions.
This neuro is a complete waste of time and space. I don't care that he is a professor. He has no communication skills, talks down to me all the time, blames everything except MS and virtually accuses me of making up my symptoms. If he would get his head out of the text books and the teaching side of things perhaps he would make a better specialist. His specialty is teaching out of a text book not diagnosis I think.
I am just shattered. The thought of having to go back to him over my vertigo is almost too much to take.
I hope this wasn't too long.
I have to get tea ready now so will check back in a little later or tomorrow, I am very tired. My GP gave me some medication for the vertigo so I don't feel too bad but as she said that won't fix my problem!
If you still have the unsteadiness with your eyes closed, then you have more vestibular problems than visual. If visual is the only problem, you should be okay standing still with your eyes closed.
Q
Q
Having vertigo when your sight was impaired, or havingthe vertigo be worse when your sight was impaired, makes a lot of sense. We keep our balance and our confidence about where we are in space by a very complex interaction between seneral senses.
First there is the inner ear vestibular system. This tells us where "Down" is, what position are head is in and what direction our head is moving in (among many other things). This is all communicated to the brainstem.
Our eyes constantly tell us where the "horizon" is and give us "vertical line information. In addtion, they give us info about the movement of the world around us and the relative distance between us and the world.
The "position sensors" in our limbs, tell us where our limbs are in space, what angel our joints are at, what kind of pressure is being applied in our supporting limbs, about how our limbs are moving, etc.
The brainstem incorporates all of this via "transit hubs" called nuclei, where vast amounts of input coordinate with other info about our position with respect to the ground, our movement and velocity in space, and what the world around us is doing with regard to movement, uneven terrain, wind, our own strength. And the upper brain also helps fine tune all of this so that we don't look like drunken fools.
Any interruption of any of these information flow can affect our balance and our equilibrium. When we lose enough info about this we sense "vertigo." This sensation can be different for each person with the problem. For example, if we lose all sensation from our legs, we don't feel dizzy, but until we learn to compensate will will have poor "balance." If the coordination in the brainstem is wonky (official medical term) we may sense the world moving in wild ways. It may seem to be spinning, rolling beneath us, tilting at a steep angle. The walls may seem to be leaning in toward us or shifting. That is vertigo. It may be mild or so severe as to keep us from being able to stand. It can be intermittent or constant, varying only in intensity.
If the vision is interrupted or distorted by MS lesions, or any damage, the brain suddenly is missing a huge amount of information. The body can compensate, but if pieces of other information are also affected, like sensation from the legs, there aren't enough pieces of info to keep us steady and we have what Santana described.
If the vestibular system is affected and the eyes are okay, then the eyes automatically take over a huge amount of the balance and vestibular function. However, when the brainstem and inner ear do it it is all done "way in the background." In a computer this would be like the CPU handling it. If the eyes have to handle the bulk of sensory information about our movement in space and movement of the world around us, then it is like RAM doing it. It falls under "conscious thought" and it quickly causes mental fatigue. Visually busy environments (fast heavy traffic with a lot of head turning, supermarket aisles, vidoe games) become exhausting. The brain will "shut down" so to speak, from visual fatigue and we can only rest and close our eyes.
Well, I went ON-AND-ON. Probably more than you needed. Brain dump.
Quix
First there is the inner ear vestibular system. This tells us where "Down" is, what position are head is in and what direction our head is moving in (among many other things). This is all communicated to the brainstem.
Our eyes constantly tell us where the "horizon" is and give us "vertical line information. In addtion, they give us info about the movement of the world around us and the relative distance between us and the world.
The "position sensors" in our limbs, tell us where our limbs are in space, what angel our joints are at, what kind of pressure is being applied in our supporting limbs, about how our limbs are moving, etc.
The brainstem incorporates all of this via "transit hubs" called nuclei, where vast amounts of input coordinate with other info about our position with respect to the ground, our movement and velocity in space, and what the world around us is doing with regard to movement, uneven terrain, wind, our own strength. And the upper brain also helps fine tune all of this so that we don't look like drunken fools.
Any interruption of any of these information flow can affect our balance and our equilibrium. When we lose enough info about this we sense "vertigo." This sensation can be different for each person with the problem. For example, if we lose all sensation from our legs, we don't feel dizzy, but until we learn to compensate will will have poor "balance." If the coordination in the brainstem is wonky (official medical term) we may sense the world moving in wild ways. It may seem to be spinning, rolling beneath us, tilting at a steep angle. The walls may seem to be leaning in toward us or shifting. That is vertigo. It may be mild or so severe as to keep us from being able to stand. It can be intermittent or constant, varying only in intensity.
If the vision is interrupted or distorted by MS lesions, or any damage, the brain suddenly is missing a huge amount of information. The body can compensate, but if pieces of other information are also affected, like sensation from the legs, there aren't enough pieces of info to keep us steady and we have what Santana described.
If the vestibular system is affected and the eyes are okay, then the eyes automatically take over a huge amount of the balance and vestibular function. However, when the brainstem and inner ear do it it is all done "way in the background." In a computer this would be like the CPU handling it. If the eyes have to handle the bulk of sensory information about our movement in space and movement of the world around us, then it is like RAM doing it. It falls under "conscious thought" and it quickly causes mental fatigue. Visually busy environments (fast heavy traffic with a lot of head turning, supermarket aisles, vidoe games) become exhausting. The brain will "shut down" so to speak, from visual fatigue and we can only rest and close our eyes.
Well, I went ON-AND-ON. Probably more than you needed. Brain dump.
Quix
I experienced virtigo about three months into the attack I had. It was severe for about two months and has gradually gone away over the past two years. The doctors have tested my inner ears and hearing and say they are normal, so the problem is not there! They beleive I experienced this because of the change in my vision fields due to the visual field defect. If there is such a thing as visual virtigo, then that must have been what I had.
The feeling for me was a feeling that I was being still but everything else in the world was moving. My gait was very off with swaying like I was drunk. My husband told me once while I was walking into a store that I was swaying like I was drunk. I told him, I am waling straight, but the world is moving around and underneath me. It was not spinning, it was actually moving continuiously. The floors and walls appeared to be bent or had the appearance of looking like the house was sitting upon it's side.
Finally, this started to improve as my vision improved and now I only have a slight imbalance feeling that depends on what I am doing. The neuro done the test on me where he had me stand with my arms to my side and legs together and close my eyes. when I did this I swayed back and forth and could not steady my body at all. He said I had Virtigo.
I hope this helps you in some way.
Santana
The feeling for me was a feeling that I was being still but everything else in the world was moving. My gait was very off with swaying like I was drunk. My husband told me once while I was walking into a store that I was swaying like I was drunk. I told him, I am waling straight, but the world is moving around and underneath me. It was not spinning, it was actually moving continuiously. The floors and walls appeared to be bent or had the appearance of looking like the house was sitting upon it's side.
Finally, this started to improve as my vision improved and now I only have a slight imbalance feeling that depends on what I am doing. The neuro done the test on me where he had me stand with my arms to my side and legs together and close my eyes. when I did this I swayed back and forth and could not steady my body at all. He said I had Virtigo.
I hope this helps you in some way.
Santana
Hi there, here I am....been a little distracted today..
Thanks for the info and your concern.
Quix, you are right, I did end up describing it to him the wrong way but I did say to him that the floor looked like ocean waves and moved but he dismissed that and virtually put the words in my mouth, " oh so you just feel lightheaded"
If I try and put it into words then it is like being on a boat in a large swell, my head feels like that and I feel as though I am rocking back and forward, the floor moves and then I get the nausea. It is like I am moving but I am in fact still. This is vertigo right? If I was on a boat I would be sea sick, that sort of feeling.
This neuro puts me off and ruffles my feathers every time I see him. I get flustered and can't get the words right or describe things properly.
I forgot to say also that he decided that my "age" could be the cause of my new symptoms ( 50 in April ) What sort of **** thing to say is that?
Neuro: "You are getting old"
So what, so when you turn 50 you are "old" and medication affects you differently?
Give me a break! I have been taking the same medication for years and now all of a sudden because I hit 50 that all changes? This neuro is the pits. I will go back to my GP and re beg her to send me to someone else, I don't think I can stand one more minute with this moron!
Phew, now I feel better... but I am feeling sea sick again so I had better go take a tablet so that I can eat tea. I promise not to go away, I will visit regularly. There is a problem with the time difference so if I don't respond straight away I am probably asleep!
Thanks
TB
Thanks for the info and your concern.
Quix, you are right, I did end up describing it to him the wrong way but I did say to him that the floor looked like ocean waves and moved but he dismissed that and virtually put the words in my mouth, " oh so you just feel lightheaded"
If I try and put it into words then it is like being on a boat in a large swell, my head feels like that and I feel as though I am rocking back and forward, the floor moves and then I get the nausea. It is like I am moving but I am in fact still. This is vertigo right? If I was on a boat I would be sea sick, that sort of feeling.
This neuro puts me off and ruffles my feathers every time I see him. I get flustered and can't get the words right or describe things properly.
I forgot to say also that he decided that my "age" could be the cause of my new symptoms ( 50 in April ) What sort of **** thing to say is that?
Neuro: "You are getting old"
So what, so when you turn 50 you are "old" and medication affects you differently?
Give me a break! I have been taking the same medication for years and now all of a sudden because I hit 50 that all changes? This neuro is the pits. I will go back to my GP and re beg her to send me to someone else, I don't think I can stand one more minute with this moron!
Phew, now I feel better... but I am feeling sea sick again so I had better go take a tablet so that I can eat tea. I promise not to go away, I will visit regularly. There is a problem with the time difference so if I don't respond straight away I am probably asleep!
Thanks
TB
I am so sorry you found another poor excuse for a neurologist. No one should go home and cry because of the way they were treated, not treated, dismissed or made to feel like a fool.
Welcome back to the forum! I read your description of your dizziness and, I believe you described it incorrectly to him. This is a very difficult question to answer. I will try to dexcribe the difference:
1) Lightheadedness is caused by the blood pressure dropping. It feels like you are going to faint. Usually the sight dims and you may feel nausea. You can reproduce this (while sitting down) by hyperventilating. Generally your face and lips will become very pale. You can make this feeling better by putting your head down, which increases the blood flow to your head.
2) True vertigo is the sensation of the world moving, though some people will describe it as themselves moving. (I always gelt like I was suddenly falling) But your description of the floor moving in waves under you is classic true vertigo. Some people also descibe it as feeling suddenly like they were standing on a small bost in rough seas. Generally, not much makes it better except not moving much, but even still the sensation of movement continues. This also can have severe nausea.
So when you told the neuro that you thought it was lightheadedness, he would immediately think about your blood pressure. That's where you got off track with him, besides the fact that he was a horse's patoot!
It sounds like you are somewhat caught in the "public system." But, even so, I don't think all neuros will see what his opinion was and be swayed by it. I think you need to tell your GP, who clearly is concerned for you, that you have paid attention, since the evil neurol asked you about lightheadedness versus movement. That you clearly said the wrong thing. Tell her that it DOES appear that the world is moving and the floor is unstable under your feet (or whatever sensation you have.)
Then the new neuro will have that piece of info. If they ask why the change, say, you hadn't taken note of exactly which sensation it was you were having, so you paid attention and it was that the world was moving out from under you. That will take the doctor's attention in the proper direction.
I, too hope you stay with us! You need some friends and we're here.
Quix
Welcome back to the forum! I read your description of your dizziness and, I believe you described it incorrectly to him. This is a very difficult question to answer. I will try to dexcribe the difference:
1) Lightheadedness is caused by the blood pressure dropping. It feels like you are going to faint. Usually the sight dims and you may feel nausea. You can reproduce this (while sitting down) by hyperventilating. Generally your face and lips will become very pale. You can make this feeling better by putting your head down, which increases the blood flow to your head.
2) True vertigo is the sensation of the world moving, though some people will describe it as themselves moving. (I always gelt like I was suddenly falling) But your description of the floor moving in waves under you is classic true vertigo. Some people also descibe it as feeling suddenly like they were standing on a small bost in rough seas. Generally, not much makes it better except not moving much, but even still the sensation of movement continues. This also can have severe nausea.
So when you told the neuro that you thought it was lightheadedness, he would immediately think about your blood pressure. That's where you got off track with him, besides the fact that he was a horse's patoot!
It sounds like you are somewhat caught in the "public system." But, even so, I don't think all neuros will see what his opinion was and be swayed by it. I think you need to tell your GP, who clearly is concerned for you, that you have paid attention, since the evil neurol asked you about lightheadedness versus movement. That you clearly said the wrong thing. Tell her that it DOES appear that the world is moving and the floor is unstable under your feet (or whatever sensation you have.)
Then the new neuro will have that piece of info. If they ask why the change, say, you hadn't taken note of exactly which sensation it was you were having, so you paid attention and it was that the world was moving out from under you. That will take the doctor's attention in the proper direction.
I, too hope you stay with us! You need some friends and we're here.
Quix
Hi, I don't think I have met you, but I am glad you came back. I am no expert, but have dealt with a few lemons when it comes to doctors! I wasn't beleived about my sudden vision loss for 6 months. I kept pushing and moving on until I found a doctor who took me seriously. The visual field test was possitive and showed an inferior harmonious quadrantopsia and the brain MRI showed about 10 white matter lesions.
I didn't stay with the doctors who treated me this way. If I were you, I would not go back to this ignorant neuro/teacher, what ever he is! I would insist on another referal to another neuro. I am speaking from personal experience with doctors like this. They are a waste of your time and you deserve a good doctor who will listen to you and help you!
I hope you will stay around this time, because there is a lot of info and support here for you!
Take Care
Santana
I didn't stay with the doctors who treated me this way. If I were you, I would not go back to this ignorant neuro/teacher, what ever he is! I would insist on another referal to another neuro. I am speaking from personal experience with doctors like this. They are a waste of your time and you deserve a good doctor who will listen to you and help you!
I hope you will stay around this time, because there is a lot of info and support here for you!
Take Care
Santana
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