Hi, I'm Sherry. Migraines for 15 yrs & now - curly hair

Posted by nanny1950 @nanny1950, Aug 19, 2021

Hello. My name is Sherry, and I am a new member looking for some answers. I’m a 71 year old great-grandmother who has suffered from chronic migraines with auras since 2006. I was a late migraine starter at 56, but my headache patterns and symptoms have always been consistent with medical and patient reports…. until about 6 months ago. That’s when I realized that the straight-as-a-stick hair I was born with, had suddenly begun to get curly??!! SAY WHAT?? Not all of my hair, just the right side – my migraine side!
Trust me! This is not a joke. I attached some pictures so you can see I'm serious. I’m really interested in finding out if there is anyone else out there with this strange side effect. I’ve spent roughly 2 weeks going through lots of migraine posts but couldn’t find anything close to this. Other than ice packs and heating pads, there's nothing else I can think of that I have applied to only one side of my head that could have caused such a strange result. (If I knew what it was, I’d bottle it and get rich quick!)
When I have a migraine, the right side of my face swells, my right eye almost swells shut, and the hole right side of my head literally gets hot. I can never get a good reading on the top of my head due to my hair, but I have actually gotten 0.9 of a degree difference between my right and left cheeks. I have at least 5 severe migraines a week with auras and hangover migraines in between. I’m lucky to have 2 or 3 days a month without one and actually feel good.
I would love to hear from anyone who can shed some light on this crazy situation. Once again, this really is legit. I’ve already had 3 doctors laugh at me until I showed them the pictures and watched their mouths drop open!
Would love some help, please and Thank You!!

(The pictures were taken after I showered, towel dried my hair, combed it out straight and left it to dry on it's own. BTW, they're mirror-images.)

Interested in more discussions like this? Go to the Chronic Pain group.

Interesting, Sherry. Look at it this way….you still have your hair and it is pretty. I have had daily persistent headache now for 25 months every single day, every minute. I'm on the couch with ice on my head most of the day. I'll pray for you. Irene

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I can’t help with the hair changes but do wonder if you’ve found a good migraine specialist. I suffered with Chronic Migraines beginning in 2008.
I had migraines since my teenage years but they got worse after menopause. I searched for someone who would try new medicine and when they didn’t work have me try something else. It took 7 years until I found a headache specialist and she’s been a lifesaver. She didn’t give up on me and if it was out there she offered it to me. Botox and different preventatives. I am now using Aimovig and have nerve blocks every two months. She always gets back to me via email or even with an after hours call back if I have an issue. I am happy to report she has gotten me to the point I am only experiencing two to three migraines a month. It was a long road but I thank her continually at every visit.

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@mikaylar

Interesting, Sherry. Look at it this way….you still have your hair and it is pretty. I have had daily persistent headache now for 25 months every single day, every minute. I'm on the couch with ice on my head most of the day. I'll pray for you. Irene

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Hello, Irene. Thank you for the compliment. It's so gracious of you considering your situation. I can't imagine never having a good day. I'll pray for you, too. Sherry

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@crazy75

I can’t help with the hair changes but do wonder if you’ve found a good migraine specialist. I suffered with Chronic Migraines beginning in 2008.
I had migraines since my teenage years but they got worse after menopause. I searched for someone who would try new medicine and when they didn’t work have me try something else. It took 7 years until I found a headache specialist and she’s been a lifesaver. She didn’t give up on me and if it was out there she offered it to me. Botox and different preventatives. I am now using Aimovig and have nerve blocks every two months. She always gets back to me via email or even with an after hours call back if I have an issue. I am happy to report she has gotten me to the point I am only experiencing two to three migraines a month. It was a long road but I thank her continually at every visit.

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Hi, crazy75. Unfortunately, we don't have actual migraine specialist in our area. Closest one is 90 miles away, but I have found a terrific neurologist after 3 other doctors and almost 4 years. She has been great about trying different meds and if they are not working, we move on to something else. I've been on way too many meds to list, but some of the newer ones are the Sphenocath, which worked great the first treatment for 3 months, ok the second treatment and didn't work at all on the third. I was on Aimovig for about a year and a half. Cut migraines in half in the beginning but gradually worsened until they weren't doing anything at all. Then we tried Botox and I got worse! I had a bad reaction to it and my head constantly felt like I had a giant 4" rubber band around my head like a sweat band. I could not move anything above my eyelids and there was constant pressure whether I had a migraine or not. That was in May and it's still not completely gone. Next up is Ajovy autoinjectors, which has just been submitted to Medicare for approval which is one of my biggest problems. Medicare doesn't like to cover the newer meds which are very expensive. My husband has a very rare antibody blood disorder, so he also needs some expensive meds. So, there have been times when I simply haven't been able to afford $1000.00 a month for only 1 prescription, when between the two of us, we have around 18 – 20 of them. But I haven't given up! I'm so glad to hear of your success and wish you the best in the future. You have given me renewed hope that some day, it will get better! Thanks so much, Sherry

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@nanny1950
As we age… things change a lot with our bodies. To me it looks like your hair may be a little thinner on the curly side. When we age our hair may not thin evenly. With our hair thinner our hair is not as weighted down… so the curls may show more on the thinner hair areas.

My hair is thinner on my right side (it does not look that way in the attached photo… which was taken a few weeks ago.. but it is and my hair does as it wishes and pays no mind to me nor the comb & brush).. my hair is now longer than my profile photo.. instead of curls it is waves with a ringlet in shorter places like behind my ear. My waves are not even like my sister's and mama's were. My hair stayed baby soft and very thick until in my 50s… I just turned 70 a couple of weeks ago. Hairpins, clips and ponytail holders would slide out of my hair when it was so fine. I could not get the ponytail holder wrapped twice around my hair for a ponytail.. and one wrap too loose in my younger days. My hair is now long enough now for a short ponytail.. holder wrapped twice. My hair is coarser now.. dry in some places. I have been using Cetaphil lotion as my leave-in hair conditioner. Works pretty well.

More things with hair… besides age, which changes our hormones… there are other hormones too. Thyroid is one and another vitamin d. Vitamins in general can have an affect on our hair. So make sure you eat a balance diet and take supplements if needed. Have your doctor check your thyroid and your vitamin d.. good idea to have your calcium, and b vitamins checked too.

DNA is a factor in your hair pattern too. It can come from generations before you or just your parents. My daddy's hair got thin as he aged. My mama's hair only thinned a little… she passed away a year ago at age 92. My two oldest brothers had thin wavy hair and my next brother, me and my younger sister all had thick wavy hair.

My sister had lung cancer and underwent treatment. Her hair started growing back curly. .. the same happened with a first cousin who underwent cancer treatment. So medications… not just for cancer, but our everyday maintenance medications can affect our hair .

Some of it can be the products we use with routine. … shampoos, conditioners, blow dryer, perms, dyes. I use cider vinegar as a rinse (of course rinse well after it sets in hair & on my scalp) after shampooing at least once a month to remove the build up of shampoo and conditioner. Actually I do not have to put any conditioner on after I use the vinegar.. the comb just slides through. We should use warm water and not hot on our hair. .. and if you can tolerate a cooler rinse. It isn't necessary for most people to shampoo every day… sometimes a good rinse will do.

Now onto the headache. Have you ever had an MRI of your head?
The swelling sounds like me when my sinuses act up and yes a doozy of a headache with it. .. but different than a regular migraine. .. whatever that is. My neurologist said there are many types of migraine headaches and then there are the migraine type headaches. I have no idea how he sorts them out. I had gone to him before my mama came to live with us and I was allergic to the first medication and the second one the side effects worse than the headaches. I could not deal with trying an assortment of medications at the time while taking care of mama.

I have a tendency to get nauseous often with other health problems. Someone recommended the Reliefband. It helps better than pills. I discovered it also helps to quell my headaches. It looks like a wrist watch and works likes a tens machine. I do not work for the company or get money for recommending the product. My husband bought mine through Amazon because he knew nothing of the company.. but trusts Amazon. There are two styles… one with the battery built in and rechargeable and one with a replaceable battery… I chose the latter.

I rattled on too long.. but hope I made a little sense.
ZeeGee

REPLY

Hello @nanny1950 and welcome to Mayo Clinic Connect. I can see you have had a few members reach out and respond to you already with regard to your post.

Out of curiosity, I did a quick search and found the following article that you may find of interest. In it, it talks about autonomic symptoms of a headache and differences between migraines and cluster headaches.

– Autonomic Symptoms in Headaches:
https://americanmigrainefoundation.org/resource-library/autonomic-symptoms-in-headache/
Have you been formally diagnosed with migraines?

REPLY

Hi, ZeeGee,
Thanks so much for your interest and your input & suggestions. And you've made perfect sense. Of course, my hair has naturally changed with age, but it has always been silky baby fine and super straight. Yes, it has thinned some, especially at the right temple. The biggest change (aside from the curls) is that it used to be very oily. I could not go a single day without washing my hair. Now I can go one, sometimes two days without washing it. But I blame the past 25 years of coloring my hair, blow dry & curling iron for that change. I always use a good volumizing shampoo and conditioner and also a leave in anti-frizz conditioner. Root lifter, hair spray & that's it.
I do take a multivitamin, Omega-3, and several other supplements my doctors have recommended. My primary care physician does bloodwork on me twice a year and she keeps a really good eye on everything.
Don't really know much about my DNA. My father left when I was 8 and I've never seen him again. My mother and all my brothers had straight hair, much thicker than mine. Grandma's was long, silky, straight and snow white. She wore it braided and wrapped around her head, Swedish style.
To answer your question about the MRI – YES! In the past 15 years, I've had 2 CT scans and 3 MRI's. Prior to the onset of my migraines, which began a few days before my birthday in Jan 2006, I had already had 2 sinus surgeries. From the time I was in high school, catching a cold automatically meant a sinus infection. And you're right! Migraines and sinus headaches are totally different. It wasn't until I was 42 that I finally went to an ENT who said he could fix me up with surgery. And he DID! For 8 years I could breath through my nose, rarely a cold and not a single sinus infection or headache. So when I started having them again, I was knocking at his door and I had my second surgery in 1998. Don't get me wrong – the surgery itself is agonizing for the first few days. But after 2 weeks, your good to go and it's totally worth it.
My first migraine started at work on a Friday afternoon and lasted all weekend. I went to my primary doctor Monday morning and she sent me for my first MRI and then sent me to a neurologist. He put me on Lyrica for a month, which didn't help at all. Then he said the MRI showed I had sinus problems. I knew these headaches were not sinus. I had lived most of my life with sinus headaches and this was nothing like it. But he insisted that I go back to my ENT. So, in 2006, I had my 3rd sinus surgery which did absolutely nothing except make me suffer for 2 weeks along with the migraines. Needless to say, I never went back to that neurologist. But, I still don't have any sinus problems! I have also had a dental exam for TMJ, a biopsy done on my temporal artery for temporal arteritis, a spinal tap, a complete nerve study on my upper right side, a sleep study (no sleep apnea), 2 sessions of physical therapy (one for 9 months and the other for 4 months) and a few others I can't recall at the moment.
It's amazing how little I actually knew about migraines until about a year ago when I started reading articles I found on line about them. In particular, I found the ones from WebMD to be very informative, not too technical or too long, and limited to a particular aspect of migraines. It wasn't long before I signed up for WebMD.com and requested their weekly Migraine Newsletter (they have them on all sorts of issues and diseases). It seems I learn something new each week and it amazes me how much of it falls right in line with my experiences. I highly recommend it. Your doctor is absolutely right about the complexity of migraines. It's a very misunderstood disease, even by the people who have it.
I'm glad to hear that you are getting some relief from your nausea with the Relief Band. I don't have a lot of nausea for extended periods. Usually just short periods, generally as auras before a migraine. Severe nausea and vomiting will be during the migraine. I sure could have used one of those when I was a kid. I suffered terribly from motion sickness, even in a car. I outgrew most of it, but I still have to be very careful about what I do. Can't read in a car or turn around to get something out of the back seat. Can't ride anything that goes round and round at an amusement park. Also suffer from vertigo.
I must go now. The migraine that has been nagging at me all day is really getting serious now.
Sherry

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@fourof5zs

@nanny1950
As we age… things change a lot with our bodies. To me it looks like your hair may be a little thinner on the curly side. When we age our hair may not thin evenly. With our hair thinner our hair is not as weighted down… so the curls may show more on the thinner hair areas.

My hair is thinner on my right side (it does not look that way in the attached photo… which was taken a few weeks ago.. but it is and my hair does as it wishes and pays no mind to me nor the comb & brush).. my hair is now longer than my profile photo.. instead of curls it is waves with a ringlet in shorter places like behind my ear. My waves are not even like my sister's and mama's were. My hair stayed baby soft and very thick until in my 50s… I just turned 70 a couple of weeks ago. Hairpins, clips and ponytail holders would slide out of my hair when it was so fine. I could not get the ponytail holder wrapped twice around my hair for a ponytail.. and one wrap too loose in my younger days. My hair is now long enough now for a short ponytail.. holder wrapped twice. My hair is coarser now.. dry in some places. I have been using Cetaphil lotion as my leave-in hair conditioner. Works pretty well.

More things with hair… besides age, which changes our hormones… there are other hormones too. Thyroid is one and another vitamin d. Vitamins in general can have an affect on our hair. So make sure you eat a balance diet and take supplements if needed. Have your doctor check your thyroid and your vitamin d.. good idea to have your calcium, and b vitamins checked too.

DNA is a factor in your hair pattern too. It can come from generations before you or just your parents. My daddy's hair got thin as he aged. My mama's hair only thinned a little… she passed away a year ago at age 92. My two oldest brothers had thin wavy hair and my next brother, me and my younger sister all had thick wavy hair.

My sister had lung cancer and underwent treatment. Her hair started growing back curly. .. the same happened with a first cousin who underwent cancer treatment. So medications… not just for cancer, but our everyday maintenance medications can affect our hair .

Some of it can be the products we use with routine. … shampoos, conditioners, blow dryer, perms, dyes. I use cider vinegar as a rinse (of course rinse well after it sets in hair & on my scalp) after shampooing at least once a month to remove the build up of shampoo and conditioner. Actually I do not have to put any conditioner on after I use the vinegar.. the comb just slides through. We should use warm water and not hot on our hair. .. and if you can tolerate a cooler rinse. It isn't necessary for most people to shampoo every day… sometimes a good rinse will do.

Now onto the headache. Have you ever had an MRI of your head?
The swelling sounds like me when my sinuses act up and yes a doozy of a headache with it. .. but different than a regular migraine. .. whatever that is. My neurologist said there are many types of migraine headaches and then there are the migraine type headaches. I have no idea how he sorts them out. I had gone to him before my mama came to live with us and I was allergic to the first medication and the second one the side effects worse than the headaches. I could not deal with trying an assortment of medications at the time while taking care of mama.

I have a tendency to get nauseous often with other health problems. Someone recommended the Reliefband. It helps better than pills. I discovered it also helps to quell my headaches. It looks like a wrist watch and works likes a tens machine. I do not work for the company or get money for recommending the product. My husband bought mine through Amazon because he knew nothing of the company.. but trusts Amazon. There are two styles… one with the battery built in and rechargeable and one with a replaceable battery… I chose the latter.

I rattled on too long.. but hope I made a little sense.
ZeeGee

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My hair is gone in the middle. 🙂

REPLY
@amandajro

Hello @nanny1950 and welcome to Mayo Clinic Connect. I can see you have had a few members reach out and respond to you already with regard to your post.

Out of curiosity, I did a quick search and found the following article that you may find of interest. In it, it talks about autonomic symptoms of a headache and differences between migraines and cluster headaches.

– Autonomic Symptoms in Headaches:
https://americanmigrainefoundation.org/resource-library/autonomic-symptoms-in-headache/
Have you been formally diagnosed with migraines?

Jump to this post

Hi, Amada,
Yes, I have been diagnosed with chronic migraines with aura. Thank you for referencing this article. I found it very interesting because I have some of the autonomic symptoms (runny nose and head sweeting), but totally unrelated to my migraines. Mine are related to physical activity. Just ordinary housework like vacuuming, cleaning the bathroom, cooking, etc, will cause my head, especially the back of my neck, to start sweating and my nose to run. I have to take a box of tissues with me when I go outside to work in the yard.
But I also have the eye and facial swelling during migraines, only on my right side. I have never had a migraine on the left side, always the right.
Sherry

REPLY

@nanny1950 I also have migraines.but thankfully less severe than 5 years ago. I guess I can thank Michigan Head Pain Clinic, in Ann Arbor for that they put me on a preventive medicine daily that does help control the number and severity of migraines that I now get. I am definitely affected by changes in weather and stress being my biggest triggers. Summer weather changes affect me more than any time of year.I have not noticed the hair changes that you have. It is not quite as thick and heavy as it used to be but texture wise it behaves the same. I have been hospitalized for migraines by MHP and given different medications for prevention and treatment along with Behavioral therapy. First time was for a month on the unit, second time for 2 weeks. If anyone has migraines that have not been successfully treated I would suggest checking out MHP Clinic. People come there from all over the world. I used to get migraines almost daily and they are now down to 1 to 2 a week in Summer and less often in Winter.

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@suzanne2

@nanny1950 I also have migraines.but thankfully less severe than 5 years ago. I guess I can thank Michigan Head Pain Clinic, in Ann Arbor for that they put me on a preventive medicine daily that does help control the number and severity of migraines that I now get. I am definitely affected by changes in weather and stress being my biggest triggers. Summer weather changes affect me more than any time of year.I have not noticed the hair changes that you have. It is not quite as thick and heavy as it used to be but texture wise it behaves the same. I have been hospitalized for migraines by MHP and given different medications for prevention and treatment along with Behavioral therapy. First time was for a month on the unit, second time for 2 weeks. If anyone has migraines that have not been successfully treated I would suggest checking out MHP Clinic. People come there from all over the world. I used to get migraines almost daily and they are now down to 1 to 2 a week in Summer and less often in Winter.

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Hello, Suzanne. It's good to hear that you have lowered your migraines to 1 to 2 a week. That must certainly be a blessing for you. I don't seem to be affected by weather changes as much as you are, but a cold, windy day without anything around my neck and head will get me every time. I will definitely check into the MHP and give it some consideration.

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@kenc

My hair is gone in the middle. 🙂

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@kenc
My husband has hair loss in what would be called a friars cap. I guess the crown area another way to put it. He cut his hair down to 1/4 inch or so a couple of weeks ago. He wants it to grow our a bit more in front. His step dad used to have a horrible comb-over… and my mom-in-law she started cutting it where it looked pretty good. I am not blessed with the talent of handling the shears. 😁

At my lower crown I have some thinner hair from scarring from my childhood. I was about 8 years old and my sis 5. I had pushed her around the yard on my bike a few rounds and then told her it was my turn. She threw a conniption… a hissy fit… some kind of fit 😡 and picked up the kick stand that had fallen off my brother's peddle motorcycle and whacked me on the head with the kickstand. I had to have a several stitches. I felt sorry for my sis when she got that little spanking she got.

ZeeGee

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