By Jayne on Thursday, June 08, 2000 - 02:08 am:

Does anyone else suffer from head aches? I have constent pain on the left side of my head but sometimes it gets really bad. The ones that i get last for around three weeks and it never lets up. Im on strong pain killers and I am going to a nuroligers (brain doctor just incase you cant understand my bad spelling)but I am a little worried about it. I just wanted to know if these affect any one else with HMS
Thank you

By mariette on Monday, June 12, 2000 - 04:21 am:

no idea if it has anything to do with HMS. but it is a good thing to have it checked out. very bad headaches always need to be investigated. please be aware of the fact that some painkillers may have headaches as side effect!!

good luck

mariette

By Johanna on Monday, June 12, 2000 - 02:46 pm:

I got headaches when I got stronger painkillers.

By Debbe on Wednesday, October 25, 2000 - 11:20 am:

Jayne,
My daughter has migraines all the time. No one seems to know if it is related to her hypermobility or not. Her doctor recently made her go off her birth control pills which she is on because she has multiple ovarian cysts but she has still continued to get the migraines. She has an appointment with a neurologist on Nov. 16th. Nothing that she takes seems to relieve her pain.
But since she is allergic to most pain killers she is limited to taking Moltrin or Advil.
Will let you know what we find out from the neurologist. She did have a MRI done about three years ago that showed that there was nothing wrong.

Debbe

By Larry, NC, USA on Thursday, January 25, 2001 - 06:30 pm:

My headaches are at the upper left of my cervical area, left of the occipital. The pain is massive and leaves me totally disoriented and intermittently deaf in left ear, and feel like walking in front of a speeding truck. My problem is based in first cervical subluxation/rotation. Nice way of saying my head is not sitting square on top of my top vertebra. Of course there are numerous other vertebrae out of alignment right down to my pelvis. But it's the head/neckaches that really kill. I use a chiropractor plus 2-200mg Celebrex, 1-20mg Celexa, 1-to-3 10mg Flexeril, and 1-3 10mg Toradol at peak pain, per day to help with the pain. I wish I could stop the joint dislocations, hip, wrists, and shoulder, but only the Chiropractor can put me back into alignment. My physician strongly supports chiropractic, very rare.

By Karen on Friday, January 26, 2001 - 04:02 pm:

i sometimes get terrible headaches, which are, strangely enough, caused by my hip dislocation; when my pelvic area is out of alignment it offsets the whole spine, and it travels right up to the base of the head, trying to compensate; the pain is sometimes like a knife, in the back of my head. i also feel sort of dizzy during bad episodes; best relief is, as larry noted, chiropractic adjustment. I see one who does DNFT (direct non-force technique) method, so there's no cracking. It works great, but I have to keep going back due to hypermobility.

By Heather on Saturday, February 10, 2001 - 03:35 pm:

I was concerned to read about your chiro treatments, larry. The last message sounded beter, from Karen, with the DNFT: with HMS you have to be really careful about being manipulated too often, because it can make the joints even more hypermobile!! Because our ligaments are lax with HMS, the joint support is not adequate, so manipulation just increases the joint laxity, and can also set up chronic inflammation. I was manipulated for 2 years by an osteopath who dodn't take any notice of the warning signs ie increased pain, severe reaction to the treatments, and, as I now know, more laxness in my spine particularly. My spinal joints now move far too easily, and the osteopath just used to say,"your hips are tilted and your back is out of alignment, so I'll put it back"-crack, crack,crack!! A good osteo/chiro/PT will not maipulate someone with severe HMS, or at least limit the times when it is done. Please don't take this the wrong way, Larry! I am not suggesting that the treatment you have had is rubbish, but do be careful-experience has warned me, and osteos/chiros i have seen since(and PT's) won't touch manipulation on me with a bargepole, because I react so badly...

All the best,

By Heather on Saturday, February 10, 2001 - 03:39 pm:

Has anyone else noticed more severe headaches with certain medications? I found that when I was on Indomethacin(Indocid/Flexin), I used to get terrible headahces, which got worse the longer i took them. The Indomethacin was really effective for the pain, but really did seem to aggravate headaches. most anti-inflammatories seem to give me headahces, as well as upsetting my bowels/stomach, but so far haven't noticed bad side effects with celebrex.

By Ann on Sunday, February 11, 2001 - 02:45 am:

I get constant headaches but I never thought it could be related to HMS does anyone know what percentage of HMS sufferes get headaches and has it been researched

By Jane on Sunday, February 11, 2001 - 09:01 pm:

Ann,
I also have consistent headaches, particularly when I'm tired, and I think it is related to HMS -- loose joints mean tense muscles, and my massage therapist guy says that neck tension accounts for 90% of headaches. Just some food for thought.
Jane

By Sam on Friday, June 22, 2001 - 10:32 am:

I have migraines and HMS. I also have a lot of neck tension. Just thought I'd say.

By berte on Friday, June 22, 2001 - 12:45 pm:

I used to have headaches a lot. Untill someone discoverd I have "crossed eyes"(due to HMS?).
Now that I'm wearing special prisma glasses, I don't have a lot off headaches anymore.
When I have them it is mostly when I wake up and its due to sleeping in a wrong position.

Berte.

By Lori on Friday, August 31, 2001 - 10:20 pm:

Jayne, Hi, I just popped in this forum because I have/or should I say had chronic daily headaches,& I was curious. I would always just use OTC pain relievers (Advil, Excedrin, Excedrine Migraine). When the headaches were not relieved anymore by these OTC drugs, I was in so much pain that I could hardly "function". To make a long story short, my neurologist ruled out any physical illness with an MRI. I also discovered I was getting "rebound" headaches from the ibuprofen and acetimetaphen I was taking. My body just craved more & the pain was a signal. My doctor put me on Pamelor. This is an antidepressant, but it is also used to treat chronic pain. I take 2-50 mg caplets at bedtime. It takes a few weeks until you feel the drug working, but it really controls those chronic daily headaches.

Just some friendly advice. You can take it or leave it.

Lori

By charlie on Monday, January 07, 2002 - 01:51 pm:

Hi, just thought i would add my bit too, I get headaches but they tend to bedown the right side of my head and it moves down my body.
Charlie

By Jayne on Friday, January 11, 2002 - 03:23 pm:

Hi Charlie, i also tend to suffer from headaches and have been told that its all to do with the muscles not working properly in my neck!! wot do you think??

By Sharon on Friday, January 11, 2002 - 05:10 pm:

I too suffer from bad headaches and migranes and have been told that a number of things a causing it such as 1. loose ligaments etc in neck/shoulders or upper back, 2. dehydration (try mixing 1/2 sports drink such as gatoraid with 1/2 water), 3. The medication that we take for pain etc control can cause headaches and a hangover type effect, 4. tension from holding the neck etc in a "normal" position without having "proper ligament control so muscles get fatigued very easily

Hope this helps

By Kathryn on Saturday, January 12, 2002 - 08:31 am:

Thanks for explaining it I have HMS and the pain has become worse I have also developed headaches too and have wondered why for a while .
Kathryn

By angelashackleton on Friday, May 03, 2002 - 01:20 pm:

my son was diagnosed with HMS 18mths ago. He started having severe headaches 8months ago, they would last for days on end and he would be screaming with the pain. His walking gait also starting laying to the right and his neck also. They would wake him during the night and then he started to fall to sleep at school and his speech began to slur. At first they thought he had a brain tumor and lots of test were done and he had an MIR. But it was inconclusive, they put him on some medicine called Pizotifen. It seemed to work within in a week the pain had reduced but not clear the headaches. Since January 2002 he has not had anymore migraine attackes as the consultant explained, but only the usual childs headache. We are now reducing the medicine and hopefully he will be off it by the end of May. The consultant said with HMS and fatigue it is not only your joints that become tired there is
also mental exhaustion as you are concious of moving your joints and you never totally relax and this could be a major factor to the headaches as you never have a proper sleep.

By mark sheriff on Saturday, July 13, 2002 - 12:04 pm:

Hi Sharon,
My daughter is a national swimmer and has always had shoulder problems with her shoulders. It was always scary to see her do the back stroke as her arm looked bending the other way because of her hypermobility. This year she started getting headaches and after sport care women's college hospital saying their bag of tricks is empty we found a lady who is an orthopeadic manipulative physiotherapists who diagnozed her with hyper neck and needed to strenghten up the neck muscles as the back ones were holding up her head and the ones under the chin had not done any work for a while and needed to balance the others. The exercises she was given are good for regular swimmers but because of her condition she must do more specific theraband exercises. hope this works

By simone donnelly on Friday, November 01, 2002 - 01:59 am:

hi all

i have recently had three admissions into hospital within ten weeks and have always had headaches but nothing i couldn't cope with. on my third admission the doctors wanted me to try prozac as it has(apparently, not that i have noticed) pain killing effects, i reluctantly agreed to try this drug- i was willing to try anything my hms had got so bad i could no longer do anyhting on my own. anyway after about five days i developed a terrible migraine that included sickness and dizziness. the doctors at the hospital said that although headaches are a side effect of prozac they didnt think that was the cause ( side effects are usually experienced within 72 hours). anyway i was discharged with an ever getting worse migraine, after about three weeks at home i got really fed up of it cause none of the traditional pain killers were working, i went to see my gp and he explained to me that along with my hms i also have muscle 'weakness' and that the muscles in my head and my eyes were contracting severely. as i cant take anti inflammatories he told me to take paracetamol four times a day for about a week.

well i did and am still no better, yesterday i had to stay in bed due to a migraine.

so yes they are connected to hms but unfortunately theres nothing that can be done except relaxation and rest

sorry if i have bored you with my lengthy problem

simone (england)