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Lizabeth94
September 7th, 2018, 06:49 PM
So, as some of you know I struggle with chronic migraines, which is the reason I have kept my hair short for past several years...

If anyone is wondering, the phenomena where it feels like your hair "aches" is called cutaneous allodynia, heres a link to an awesome article on the subject and how it relates to migraines: https://americanmigrainefoundation.org/understanding-migraine/allodynia-when-touch-hurts-but-shouldnt/

It also affects other areas of my body, for example I can't wear tight or scratchy clothing especially during a migraine because its completely overwhelming and painful.

Basically once I reach shoulder length, i start struggling with more and more scalp pain. It usually feels as though my entire scalp is bruised. On good days I can wear my hair down (dry) with no problems, but it hurts when its wet due to how heavy it gets (my hair is very porous and soaks up the water like a sponge). I can maybe do a loose ponytail or braids for a short period of time, but then I have to take them out.... And on bad days even wearing it down or trying comb or part it hurts. Wet hair and updos become unbearable!

I reached shoulder length around the beginning of summer, and right on cue my scalp pain started getting worse. Rather than cutting it, I decided to keep growing and just hope it goes away. The pain escalated over the summer, and my overall migraine pain got worse too. At the end of august I was about 1 inch away from collarbone and couldn't take it anymore, so I tried using some thinning scissors to take the weight out of my thick hair. It didn't really help much, so out of desperation I gave myself an undercut selectively on the parts of my head where I get the worst pain during my migraines (the right side up to my temples, and the back of my head/nape.) And then I evened up my hemline bringing me back to shoulder length. :knitfrog:

I haven't taken pictures yet, but I will try to take some maybe tomorrow. In the meantime, this is EXACTLY what I have right now, its even pretty close to my natural hair color.

https://hairstylehub.com/short-haircuts-for-thick-hair/25/

The undercut seems to be helping, my hair no longer hurts me when its dry, only when its extra heavy from being wet. I haven't bothered attempting to put it in a ponytail or braid yet, its not really necessary at shoulder length, plus it would show my under cut since my hair isn't long enough to make a low pony. (I think people with undercuts look ridiculous when they have their hair in a high pony or bun showing the undercut, but thats just my personal opinion!)

The problem is.... I'm still struggling with pain when my hair is wet... and since I'm a swim instructor and a lifeguard, my hair is wet CONSTANTLY. Its not like I can just throw on a swim cap either to keep it dry, they are generally frowned upon during lessons, and plus the tight squeezing hurts just as badly as the weight of wet hair.
Also, i'm worried that as I continue to grow, the pain will return and it will begin to bother me even when dry, or that when it gets beyond shoulder and I'm forced to tie it back during lessons, it will hurt too much to do so.

The recommended medication for treating allodynia seems to be triptans, but I've tried them before and I don't tolerate them, I get pretty nasty side effects. I do get botox shots from my neurologist every 3 months, but it doesn't numb up my scalp enough to make a difference. I'm planning to ask my doctor if there is anything else I can try when I see him next specifically for allodynia pain, short of taking prescription pain killers. I'm hoping maybe there is some sort of medicated shampoo or something that I can use to numb the scalp. :confused:

A friend of mine (who also has migraines with allodynia) suggested using a roll on lidocaine directly on my scalp. (Warning, it can cause hair loss if used over a long period of time!) I tried that and I didn't notice a difference. :(

The only way I've found to relieve the pain, is using a hair scarf as a makeshift hair "snood." I just very gently fold my hair against the back of my head, tie on a scarf loosely (rosie the riveter style), and voila! Instant pain relief! https://i.pinimg.com/originals/85/ff/54/85ff543deee070f6fb1b03e5dd50a67b.jpg
(https://i.pinimg.com/originals/85/ff/54/85ff543deee070f6fb1b03e5dd50a67b.jpg)
It works because the scarf supports the weight of my hair instead of my scalp, and my hair isn't being pulled anywhere, its just loosely floating around inside the scarf. (If you've never tried this I highly recommend it, even you don't experience scalp pain, its just super comfortable in general!) It also works with a lightweight slouchy beanie hat as long as it isn't too heavy or too tight. I just put it on, then pick up my hair and drop it into the "pouch" in the back. Of course this isn't an option when I need it the most, because bandanas and hats are not allowed when I'm at work! :rant:

I'm not planning on cutting it any further yet... as fate would have it... I'm having surgery on my left hip next week, and I will be on desk duty likely till the end of the year. Since I won't be swimming/teaching swim lessons for a while, I won't have to get my hair wet or wash it more than once a week, and this means i can avoid the worst of my scalp pain for a while. If i can't find a way to manage it though by the end of the year, I may have to keep my hair short (less than shoulder) to avoid the constant pain when it soaks up water when I'm teaching lessons all day.

On one hand, as much as I love the idea of having long hair again, I'm not willing to sacrifice my awesome job or my love of swimming to keep it. On the other, not reaching my goals will make me upset, I don't like the way i look with short hair (especially now that I've gained weight that really shows in my face), I don't want to disappoint my hubby who has been looking forward to my hair getting longer, and I don't want to shell out $$$ to get my hair cut every month, sometimes I just don't have it. :cry::wail:

I can't be the only one who has this problem, what do you do to stop the pain?

Jo Ann
September 7th, 2018, 10:15 PM
Two things come to mind, Lizabeth:

Did the migraines start when you became a swimming instructor? If so, maybe you have a sensitivity to the pool chemicals--chlorine can give me a headache something awful!

How is your scalp? The pool chemicals can be very drying--maybe your scalp needs a little more TLC and moisture/lubrication?

Another possibility is your blood pressure. My Mom is a lifelong migraine sufferer, but she found some relief later in life when she developed high blood pressure and started taking medications for it. Her migraines decreased in severity and frequency.

Just some thoughts :flower:

CrowningGlory
September 8th, 2018, 12:26 AM
On one hand, as much as I love the idea of having long hair again, I'm not willing to sacrifice my awesome job or my love of swimming to keep it. On the other, not reaching my goals will make me upset, I don't like the way i look with short hair (especially now that I've gained weight that really shows in my face), I don't want to disappoint my hubby who has been looking forward to my hair getting longer, and I don't want to shell out $$$ to get my hair cut every month, sometimes I just don't have it. :cry::wail:

I can't be the only one who has this problem, what do you do to stop the pain?


Firstly, I'm so sorry you experience this. I have had neuralgia on and off over the years and sometimes the pain on my scalp is so bad that I can't even bear to touch my hair. Different pain and causes, I know, and it usually only lasts three days at a time, but I may have some understanding of your pain. However, I cannot imagine putting up with what you do and, quiet frankly, if I suffered that much I would probably change my hair goals.

As much as you want long hair, it might be a case of your health should come first. I know you don't want to disappoint your husband, but I'm sure he would agree that he'd rather you didn't suffer because of your hair. All I can suggest is find your maximum length with minimum pain and rock that length. I know it's probably not what you want to hear but unless someone has some tip to reduce your pain I really do think your hair goals should be secondary to your well-being.

Lady Stardust
September 8th, 2018, 03:08 AM
Oh crikey, Iím sorry that youíre going through this. I have pain like you describe, but for different reasons. I fainted and smacked my head really hard on a tiled floor nearly 4 months ago. I seem to have bruised the membrane that covers the skull, and this aggravated nerve endings. Itís very gradually getting better. I can completely relate to the pain of parting your hair, braiding, laying your head on a pillow, even movement from the slightest breeze. Warmth from the sun is unbearable. I take ibuprofen and paracetamol for the pain. They help more now than they did at the beginning. At first the pain was so bad nothing helped at all.

I took Amitriptyline for a couple of weeks, which took the edge off the pain, but I couldnít cope with the side effects. Amitriptyline is prescribed for neuralgia and it certainly took the edge off the pain, but didnít take it away. It is sometimes prescribed as a prophylactic for migraine sufferers, but I still got a migraine when I was taking it. Some people take it for years. I think the side effects I got were quite unusual - itís supposed to make you drowsy but I had eyes on stalks!

The only thing that helped me was Craniosacral Therapy. It has a downside because it involves touching the scalp (very lightly) and the pain would be worse after a session for a couple of days or more. But after that, the pain cut in half. I had whiplash from the fall and the muscles had tightened and pressure increased on the nerves. Once the muscles relaxed and the pressure was released, the pain eased considerably. Even if you arenít aware of any shoulder, neck, back or other pain it might be with a cranio sacral session to see if anything is out of alignment and putting extra pressure somewhere. It is meant to help migraines, but to be honest it didnít help mine. Another downside with cranio sacral therapy is that it comes under alternative medicine and is considered to be unproven. This means paying privately for it in my case. I consider it to be worth it, for me, because it works, for me.

Maybe a referral to a mainstream physiotherapist would be worth a try, just to see if anything is putting pressure somewhere and contributing to migraines?

I take a triptan for migraines. Have you tried more than one type? I used I take Sumatriptan but as little as possible because it made me feel drowsy and nauseous. I switched to Almotriptan, which is a newer variety. I still get nausea sometimes (although I donít know if that is from the migraine) but I donít get any other side effects. It might be worth asking your doctor for a different type of Triptan, if you havenít already.

Iím hoping that the pain I have will eventually go. If you canít see an end in sight for yours, then I would say re-think your hair goals to find something that you like, but gives you as little pain as possible.

Lizabeth94
September 8th, 2018, 06:02 AM
Two things come to mind, Lizabeth:

Did the migraines start when you became a swimming instructor? If so, maybe you have a sensitivity to the pool chemicals--chlorine can give me a headache something awful!

How is your scalp? The pool chemicals can be very drying--maybe your scalp needs a little more TLC and moisture/lubrication?

Another possibility is your blood pressure. My Mom is a lifelong migraine sufferer, but she found some relief later in life when she developed high blood pressure and started taking medications for it. Her migraines decreased in severity and frequency.

Just some thoughts :flower:

Thanks, my migraines started way back in elementary school so its definitely not the swimming or the chemicals. :(
Also not my blood pressure, if anything it runs slightly on the low side.

Lizabeth94
September 8th, 2018, 06:04 AM
Firstly, I'm so sorry you experience this. I have had neuralgia on and off over the years and sometimes the pain on my scalp is so bad that I can't even bear to touch my hair. Different pain and causes, I know, and it usually only lasts three days at a time, but I may have some understanding of your pain. However, I cannot imagine putting up with what you do and, quiet frankly, if I suffered that much I would probably change my hair goals.

As much as you want long hair, it might be a case of your health should come first. I know you don't want to disappoint your husband, but I'm sure he would agree that he'd rather you didn't suffer because of your hair. All I can suggest is find your maximum length with minimum pain and rock that length. I know it's probably not what you want to hear but unless someone has some tip to reduce your pain I really do think your hair goals should be secondary to your well-being.

I agree. My hubby is supporitve of me cutting my hair if necessary, and even offered to pay for it, but i can still see the disappointment on his face. :(

Lizabeth94
September 8th, 2018, 06:11 AM
Oh crikey, I’m sorry that you’re going through this. I have pain like you describe, but for different reasons. I fainted and smacked my head really hard on a tiled floor nearly 4 months ago. I seem to have bruised the membrane that covers the skull, and this aggravated nerve endings. It’s very gradually getting better. I can completely relate to the pain of parting your hair, braiding, laying your head on a pillow, even movement from the slightest breeze. Warmth from the sun is unbearable. I take ibuprofen and paracetamol for the pain. They help more now than they did at the beginning. At first the pain was so bad nothing helped at all.

I took Amitriptyline for a couple of weeks, which took the edge off the pain, but I couldn’t cope with the side effects. Amitriptyline is prescribed for neuralgia and it certainly took the edge off the pain, but didn’t take it away. It is sometimes prescribed as a prophylactic for migraine sufferers, but I still got a migraine when I was taking it. Some people take it for years. I think the side effects I got were quite unusual - it’s supposed to make you drowsy but I had eyes on stalks!

The only thing that helped me was Craniosacral Therapy. It has a downside because it involves touching the scalp (very lightly) and the pain would be worse after a session for a couple of days or more. But after that, the pain cut in half. I had whiplash from the fall and the muscles had tightened and pressure increased on the nerves. Once the muscles relaxed and the pressure was released, the pain eased considerably. Even if you aren’t aware of any shoulder, neck, back or other pain it might be with a cranio sacral session to see if anything is out of alignment and putting extra pressure somewhere. It is meant to help migraines, but to be honest it didn’t help mine. Another downside with cranio sacral therapy is that it comes under alternative medicine and is considered to be unproven. This means paying privately for it in my case. I consider it to be worth it, for me, because it works, for me.

Maybe a referral to a mainstream physiotherapist would be worth a try, just to see if anything is putting pressure somewhere and contributing to migraines?

I take a triptan for migraines. Have you tried more than one type? I used I take Sumatriptan but as little as possible because it made me feel drowsy and nauseous. I switched to Almotriptan, which is a newer variety. I still get nausea sometimes (although I don’t know if that is from the migraine) but I don’t get any other side effects. It might be worth asking your doctor for a different type of Triptan, if you haven’t already.

I’m hoping that the pain I have will eventually go. If you can’t see an end in sight for yours, then I would say re-think your hair goals to find something that you like, but gives you as little pain as possible.

Im totally interested in the craniosacral therapy, if you know any good links to share please do!
I did see a chiropractor for over a year in my teens where he mostly asjusted my neck, if anything it made me worse.
Also triptans are a a class of antidepressant, all of which make me suicidal even in tiny doses.

lapushka
September 8th, 2018, 06:45 AM
Migraines. Who knows why we get them; if that were known, I think a solution would be very close as well. Unfortunately they are much more complicated than that.

For instance, I have hormonal migraines. My mom had them too. Through puberty, all the way until menopause. Now she only gets sinus headaches, but those run in the family. The doctor always brings up "smoking", but my mom's youngest brother has this too, and he is and never was a smoker, so... Grandpa had it too.

I do have allodynia but that is due to my CRPS, and is part of nerve pain. Maybe something for your neurologist to investigate further (the allodynia I mean). I don't quite see what the connection is to a migraine, but... we all experience them differently, of course.

If you can't wear your hair longer, then don't force the issue. If you can only handle a pixie-cut, then why not rock it, and go for it? They can be pretty too, and if it stops the ache, then what are you waiting for? :) I would *run* to the stylist.

In any case, I hope they find the right type of medication for you.

Good luck!

Lizabeth94
September 8th, 2018, 10:11 AM
Migraines. Who knows why we get them; if that were known, I think a solution would be very close as well. Unfortunately they are much more complicated than that.

For instance, I have hormonal migraines. My mom had them too. Through puberty, all the way until menopause. Now she only gets sinus headaches, but those run in the family. The doctor always brings up "smoking", but my mom's youngest brother has this too, and he is and never was a smoker, so... Grandpa had it too.

I do have allodynia but that is due to my CRPS, and is part of nerve pain. Maybe something for your neurologist to investigate further (the allodynia I mean). I don't quite see what the connection is to a migraine, but... we all experience them differently, of course.

If you can't wear your hair longer, then don't force the issue. If you can only handle a pixie-cut, then why not rock it, and go for it? They can be pretty too, and if it stops the ache, then what are you waiting for? :) I would *run* to the stylist.

In any case, I hope they find the right type of medication for you.

Good luck!

Thanks for the encouragement! I'm planning to wait till i see my neurologist again before I decide what to do.

Its true that the allodynia can be a disorder all on its own, without migraines, or it can correlate with other conditions instead. The first link I shared in my original post talks about how they related with migraines. Its just like migraine sufferers being super sensitive to sound, bright light, or smells, touch is just another one of the senses.

Lady Stardust
September 8th, 2018, 10:27 AM
Im totally interested in the craniosacral therapy, if you know any good links to share please do!
I did see a chiropractor for over a year in my teens where he mostly asjusted my neck, if anything it made me worse.
Also triptans are a a class of antidepressant, all of which make me suicidal even in tiny doses.

Here’s a link to the Upledger Institute with information about cranio sacral therapy. It’s UK based but I assume there will be a US based organisation somewhere?
http://www.upledger.co.uk/what-is-

Ah I see so triptans are definitely out! Amitriptyline is also an antidepressant, but is prescribed in much smaller doses for nerve pain. It made me really anxious, totally wired, horrible.

lapushka
September 8th, 2018, 11:40 AM
Its true that the allodynia can be a disorder all on its own, without migraines, or it can correlate with other conditions instead. The first link I shared in my original post talks about how they related with migraines. Its just like migraine sufferers being super sensitive to sound, bright light, or smells, touch is just another one of the senses.

Got all those, but never had allodynia from a migraine, yes, my head is super, Łber sensitive to touch at that point, but not that I get hair pain - not that I don't believe you, don't get me wrong. I just never experienced it like that, doesn't mean you can't.

When is your next neurologist visit? Good luck!

Lizabeth94
September 8th, 2018, 12:32 PM
Got all those, but never had allodynia from a migraine, yes, my head is super, Łber sensitive to touch at that point, but not that I get hair pain - not that I don't believe you, don't get me wrong. I just never experienced it like that, doesn't mean you can't.

When is your next neurologist visit? Good luck!

End of October :(

Lizabeth94
September 8th, 2018, 12:34 PM
Hereís a link to the Upledger Institute with information about cranio sacral therapy. Itís UK based but I assume there will be a US based organisation somewhere?
http://www.upledger.co.uk/what-is-

Ah I see so triptans are definitely out! Amitriptyline is also an antidepressant, but is prescribed in much smaller doses for nerve pain. It made me really anxious, totally wired, horrible.

Yeah they are terrible!

ok, thanks, I will look into it!

lapushka
September 8th, 2018, 04:28 PM
End of October :(

Could you make an earlier appointment; seems like it's a bit of an emergency, to me at least.

Lizabeth94
September 8th, 2018, 06:37 PM
Could you make an earlier appointment; seems like it's a bit of an emergency, to me at least.

I could, I just haven't had time to bother with my hip surgery on Wednesday, its all just sort of too much at once. :run:

lapushka
September 9th, 2018, 08:50 AM
I could, I just haven't had time to bother with my hip surgery on Wednesday, its all just sort of too much at once. :run:

Oh, I forgot about that. I understand! :flower: Just do one thing at a time.

cathair
September 9th, 2018, 12:14 PM
I'm really sorry you have to struggle with this pain. It sounds very unpleasant.

My hair only feels like that if I go too long between washes. Or sometimes if I comb it in an unusual direction.

I wondered if parting it in many different places and braiding/bunning/ponytailing it might help? It would distribute the weight a bit better.

How do you cope with French braids, are they comfy it do they make it worse?

If you haven't found it yet, there's a migraine thread on the other board:

https://forums.longhaircommunity.com/showthread.php?t=66544

You've very welcome to join us!

Lizabeth94
September 9th, 2018, 07:39 PM
I'm really sorry you have to struggle with this pain. It sounds very unpleasant.

My hair only feels like that if I go too long between washes. Or sometimes if I comb it in an unusual direction.

I wondered if parting it in many different places and braiding/bunning/ponytailing it might help? It would distribute the weight a bit better.

How do you cope with French braids, are they comfy it do they make it worse?

If you haven't found it yet, there's a migraine thread on the other board:

https://forums.longhaircommunity.com/showthread.php?t=66544

You've very welcome to join us!

Most days i can't tollerate doing a bun, ponytail, or braid for more than a few minutes. :( the most comfortable way to put my hair up is to stuff it into a loose fitting hat or hair scarf.

squirrrel
September 9th, 2018, 11:42 PM
Making sure I am reading your comment correctly, itís the actual putting up that is the problem? In which case, I wonít ask about a crown braid.

Using a scarf in the style you mentioned sounds like a great work around.

Lizabeth94
September 10th, 2018, 07:12 AM
Making sure I am reading your comment correctly, it’s the actual putting up that is the problem? In which case, I won’t ask about a crown braid.

Using a scarf in the style you mentioned sounds like a great work around.

Depends on the day, sometimes it hurts even when im just wearing down. Also putting my hair in a hat or scarf is not allowed when im at work.