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littlemisskitty Asked March 2016

Anyone else have a loved one experiencing extreme headaches?

My grandma has severe headaches. It used to be just when she was low in sugar. That was manageable. Then it was when she was moving around. Again manageable. Now the last few weeks, it has been all the time. It has gotten worse. She sometimes tells me she can't see but denies seeing white spots or anything. I wonder if it's a migraine. I mentioned it to the doctor and he sent us to get iron shots. She had one on Friday and the headache didn't go away. I'm debating on taking her to the doctor's but he always seems to follow what I think and I'm out of ideas. This isn't common to dementia right? Anyone else dealing with this kind of thing and did you have any luck treating it? She's on extra-strength tylenol every 4 hours. She can't take anything stronger because she's on blood thinners and has blood blood pressure. Morphone and oxycodone does not agree with her. She gets hallucinations and doesn't sleep. I can't handle her at home on those things and I can't see that helping with a migraine anyway. Any suggestions before I go bug the doctor?

Terry512 Apr 2016
Stacyb, I was finally diagnosed with temporal neuralgia at a later date but stopping the med was the best thing I did. That took away the main root cause of my headaches and I'm treating the neuralgia with migraine meds. I no longer have the kind of headaches that I once had and can usually stop any headache with migraine med or sometimes just an aspirin. I also went on a website called WebMD and it said that licinopril (not sure of the spelling) was the #1 bad drug by the FDA and wants it banned from the shelves. This is what they wanted me to take. goofy idiots! Sometimes, you have to do your own research and make your own decisions about medications. Don't rely on a doctor to do that for you. Between all their patients and other medical things they need to take care of, they really don't have time to research all the drugs and their side effects. Most of these drugs are dropped off by pharmaceutical reps and the doctor gives them to the patients. I won't ever again just believe a doctor when they tell me that I need this drug or that drug without first researching thoroughly and trying it for a couple of weeks to see if I can even take it. Everyone has to take an active role in their own healthcare or you'll end up regretting it. And, you weren't a noseybody; thanks for the advice.

PhoenixDaughter Apr 2016
Can I just say Mum gets pretty grim headaches (mind you anything she has is always grim - if not for her then for everybody else who has to live with her - ah wait that would be me!) When we went to the docs he sent her for temporal arteritis testing just in case but it isn't it is the crumbling of her spine that is causing nerves to be affected and hence the headaches and there is nothing that they can do for it as she can't take anti inflammatories at all - all they have prescribed is tramadol which knock me out but she can take like sweeties with no effect.

The only thing I have found that works is a sheepskin lined magnetic collar

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staceyb Apr 2016
Terry512, while I appreciate that you were able to find your problem by eliminating meds systematically, and I see no problems doing this under a Dr's guidance, there is a very serious disorder called Temporal Arteritis, that can be extremely serious, if not caught and treated properly! It actually sounds as if you may have had that, and was Not diagnosed properly, which normally requires a tiny biopsy of the temporal artery. Please be very careful with playing around with your medications without Drs care! Which is why your Dr was so grouchy about it! Did your Drs not have a treatment plan for you, once they found Temporal Neuralgia? The usual treatment is a course of Oral Steroids. I would hate to think that people would fool around with their meds, based on another's success, and not seek Drs help. Sorry, I don't mean to be a noseybody! I am glad that you found relief!

Terry512 Apr 2016
At one period of my life, I experienced extremely hard headaches so bad that I thought I had a brain tumor. Sometimes I just sat in my chair and rubbed my temples and it helped but didn't stop them. I was told it was not my medications and that I needed a CT scan of my head which showed what they called temporal neuralygia. basically, the nerves were damaged from my face up to my temples, around my ears and back to the occipital lobes and then down to the brain stem. I was feeling so bad that I knew I was headed for a stroke unless I found out what was the cause. I stopped all medications on my own and stayed off them for about 5 days, then started back one by one for 3-5 days until I could find one of them that was causing the pain. I didn't believe the doctors when they said it wasn't the meds because the CT scan came out fine and the MRI didn't show any tumor. I had the dizziness and I felt like I had been hit by a car. I went to the dental surgeon to see if maybe somewhere up in the upper regions of my teeth something was up there and was the cause - nothing. I went to an eye, ear, nose doctor and after a thorough exam, nothing was wrong so I felt It has to be the meds. After the 5 day off the BP meds, I noticed my face getting better and not hurting so much. By the 6th, 8th, 10th day the pain was almost gone. By golly, I think I had solved my pain problem. It turned out to be the Licinopril BP that was causing all the problem. Even the doctor couldn't believe it and complained that I went off the meds without his knowledge. After he griped at me for doing that, I changed doctors. The best thing I would recommend to anyone going thru a lot of pain with headaches is to check their meds first. It cost me a lot of money to get the exams first and then the CT and MRI before deciding on stopping the meds. I could have saved myself a load of money and started there first. Pain is just a symptom. There could be so many different things that could cause a headache but start with the most logical and easiest - meds.

Jeanop Apr 2016
My husband was diagnosed with AD, also PCA which causes the brain to not understand what the eyes are seeing. His awful headaches started at same time. they have done MRI, CT, sees Neurologist at KU Alz clinic no one knows why the headaches, one Dr. put him on Gabapentin, which is for nerve pain. That helped immensely, they have had to up the dose, but has helped.

Dad_Was_Robbed Apr 2016
Have you had her check for migraines or even a brain tumor? Either of those will definitely cause bad headaches

SueC1957 Apr 2016
Sorry, I didn't clarify that. When she was still living alone in S.F.(3 years ago, in the earlier stages of Alzheimer's) she heard "noises". I moved her to So. Cal. 2 years ago, into a senior (non-assisted) building. I just had to place her in a memory care residence last October. She continues to complain about the headaches most every day. We've exhausted all possibilities (neurologist, brain surgeon, CT/MRI, meds, etc. It's too bad nothing can relieve the headaches.

Llamalover47 Apr 2016
Your mother with Alzheimer's called the landlord? How?

SueC1957 Apr 2016
My 93 year old mother, who has Alzheimer's, has had headaches for 5+ years. She has also been "hearing things" for the same amount of time. The "sounds" were so bad that she called the landlord to find out what was wrong. He heard nothing. I went to visit her and also heard nothing. Then, she "heard" the sounds in my car, and she knew it was in her head.
Her doctor in S.F. seemed to just pass it off. He sent her to a pain clinic. They gave her Morphine 7.5 mg twice a day!!!!! (Real good (sarcastic) for a person with beginning Alzheimer's!!) NO medications got rid of the "pain". Occasionally, the anti-anxiety medication, Ativan (Lorazapam) worked, but not all the time.
When she moved to southern California 2 years ago, her new doctor put her through many tests. It revealed she had a tiny brain tumor OUTSIDE the brain (meningioma). We were referred to a brain surgeon. He said that NO WAY would this tiny benign growth cause headaches. (Hey, he's the brain surgeon, he should know.).
In reading about Alzheimer's disease, it says that the affected person can hear things (conversations/noises/etc.) that aren't there. There can be a constant buzzing in the head. I'm assuming that, since my mother has had every test in the book, and they can't find the cause of her pain and she is suffering with these noises/voices, she INTERPRETS this as pain. She is never without a "headache", no medication works and there is nothing left to try.
I just wanted to share my mom's story. I hope this is NOT your grandmother's case. I would recommend a neurological evaluation. If her doctor is not doing his/her job, change doctors. You wouldn't put up with a substandard plummer, electrician, etc. Why would you put up with a substandard doctor?

Mrl3ill Mar 2016
Wow, this is the 37th post & I haven't heard back from "Miss Kitty". Have I missed something. Maybe we've scared her off... Back off every one.

Miss Kitty, hope you are doing well. Let me know.

Mrl3ill

BetseyP Mar 2016
I have 2 words for you: 2nd opinion. Or even: new doctor. That's crazy. MRI's, pain control,. There's no management here.

Llamalover47 Mar 2016
Take her to a neurologist. There is no need to "wonder" if it's a migraine. Find out definitely. Don't wait. It could be a symptom of something much worse, such as a t.i.a. If they are found out to be migraines, the neurologist will be able to give her a prophylactic med (no joke on the name-this is a daily med she will take) or an abortive med (a med that you take immediately at the first twinge of pain). I'm pretty much an expert on migraines since in my 50's, I would suffer with one every other day during my working career. I WONDER-VERY IMPORTANT QUESTION-DOES SHE GET THEM WITH BAROMETRIC PRESSURE WEATHER CHANGES??

Mulata88 Mar 2016
Little Miss Kitty,
If you are afraid that you are going to BUG the doctor.............we have problems................
Doctors are there for a reason, and a few of the comments do mention a geriatrician. The doctor specializing in the elderly.
Don't try to diagnose it yourself. You do not have the training.
The doctor can / if need be / order blood work, tests, let's not jump into the worst of conclusions.
What does help a lot is writing down:
When it started, what triggered if anything?
How long did it last? Hours, half day? One whole day? Days?
Is it aggravated by: Sound, Light, Smells?
Does it make grandma dizzy? Is the room spinning or is it her perception that she is the one spinning?
Is she well hydrated?
Write everything down /// e-v-e-r-y-t-h-i-n-g!
The least bit of a detail could be the answer.
Have her seen / checked ASAP. Let us know what you find. We are here for you.
Hugs,
M88

Dad_Was_Robbed Mar 2016
One thought I had would be possible migraines. Another thought would be to get her checked for a brain tumor because tumors can also cause headaches. If for some reason she has been having coughing spells, violent coughing spells can also cause severe headaches, I'm actually recovering from a severe headache right now due to a health issue that causes a violent series of coughing spells

Rosebush Mar 2016
Littlemisskitty, how is your grandmom, can you give us an update.

muffincat Mar 2016
First how many meds is she on, is she polypharma, how is she sleeping does she get sleep apnoea, that can cause headaches,. if she is on 'blood thinners' I presume she has vascular problems,is she having vascular insufficiency headaches, what is her B/p during a headache, What does relieve it, a hot drink, a cold drink, something sweet, does she feel hot or cold, does she complain of heat or chill. Are her specatacles freshly tested for eyesight? when did she last go out for a pleasant walk. Does she have arthritis of the neck causing triggers.. so many possibilities................ OR that they are not a headache as such but that the stress of living is upon her

Kleppy Mar 2016
My mother is 85 and had a stroke a year ago. Before that, she says she "never" had headaches, and now she has them several times a week. We just went to see a neurologist, fearing the worst. His diagnosis, however, was that her severe osteoarthritis in her neck is causing nerve pinches and aggravation, and these are the causes of her headaches. We're very reassured to hear it isn't something more serious, and also that this is something we can deal with relatively easily.

SuePeace Mar 2016
Please make an appointment. My mother has the same thing. Headaches, neck aches, constantly. I took her to the hospital. They did a cat scan and numerous other tests. Thankfully nothing showed up, but then again her headache/neck ache continues on a daily basis. I bought one of those wraps you warm up in the microwave, which helps and also Aleve. I wish I could ease her pain, but am at a loss now.

JoAnn29 Mar 2016
Tramadol should notbe given to the elderly. Gives them hallucinations. Glocoma will give a person headaches. Call her eye doctor.

bewildered4life Mar 2016
Could she have diabetes?...need blood test for that-that's a 12 hour fast i believe, usually it means poor circulation, is it possible to get her walking w/you around the block?(don't know if this is possible for you or her?), sounds like she has had a stroke before because of blood thinners, get an x-ray of her skull to check for lesions, tumours, blood clots, ect...just some suggestions, advil works great/poor circulation-low oxygen in the blood

peghello Mar 2016
My mother also developed Temporal Arteritis. It's very painful and caused much pain in her head. Her SED rate should be checked, and the doctor would have to do a biopsy to confirm that she actually has it. The treatment is a rather large dosage of prednisone. Another cause for headaches is high blood pressure, so ensure that she is on the proper dosage of her meds for that. Wishing you much luck. I know it's very difficult and frustrating.

lifeexperiences Mar 2016
take her to the doctor!! i know 3 people that had severe headaches and wound up with brain tumors!

Rosebush Mar 2016
I would also put the issue of changing doctors on the back burner for the moment and just handle one thing at a time.

Rosebush Mar 2016
My aunt had a terrible headache that started late one night and the next morning she couldn't see out of one eye, took her to wills eye hosp and she was diagnosed with GCA, lost the sight in one eye but they were able to save the sight in the other eye. The other suggestion about a CAT is also a must. Taking grandma to the ER gets you immediate attention and saves you from running all over to different doctors. It ihis was my grandmom, I would go to the hospital immediately even if it meant promising that you would never leave her side. My grandmom was of the generation that you only went to the hospital to die and was very afraid to go. This was the only way she agreed. I kept my promise and never left her side. Please get her treatment immediately. Wishing you the best .

moondance Mar 2016
Why don't you allow a professional PCP to determine what is going on?

Susieq9001 Mar 2016
Oh my gosh.... Please take her to the ER immediately!!!! She is experiencing symptoms of Giant Cell Arteritis and she will need to be on high dosage of prednisone to keep her from going blind! If you don't trust this answer, take her to her eye doc right now who will tell you the same thing or if she has a Rheumatologist, he will tell you to get her to the hospital so as to get an IV started to arrest her Arteritis! Good luck. This is an awful disease that is rare but seen in elderly women. Please take her now!

cwillie Mar 2016
I agree with most of the others, new severe headaches deserve an investigation into the cause, regardless of how old the patient is.

If you think they are from tension or arthritic vertebrae my mom gets some relief from her headaches with OTC creams used for muscle and joint pain.

Stregalina, sorry about the missed diagnosis, but glioblastoma is terribly fast growing and the long term prognosis is not good no matter how soon you find it. I hope they were able to keep her comfortable to the end. ((hugs))

Rhonda60 Mar 2016
I say find a different doctor

wolflover451 Mar 2016
I am suggesting the same thing as 3rdtime.....time to change doctors if he hasn't already asked for a CT scan OR the fact that he just agrees with what you think means you need a new doctor......otherwise take her to the ER and they will do a scan if you insist and tell them how bad it is. good luck
**did she hit her head recently or anything like that?**

Jeanop Mar 2016
my husband has had several MRIs and nothing shows up. For us, it has to be associated with the Alzheimer;s. They are more interested in preventing now and not so much being done to help those with it.

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