Migraineurs Support User Group
Cluster migraines
About This Group:

A place for migraineurs to discuss anything and everything related to migraines. Topic suggestions: Think of this as a support group for migraineurs. Reach out to group members when ever you need support. Give your support to fellow migraineurs. You, as a migraineur yourself, probably have a wealth of knowledge to share with others. The knowledge that you have could vastly improve the quality of life for another group member. Share share share! Discuss your current acute and preventative treatment plans. Ask others about their current acute and preventative treatment plans. Discuss past acute and preventative treatment plans as well... we can always learn something from what didn't work! Discuss your own personal tips and tricks for lessening the severity of acute migraine attacks. Post about your upcoming GP or Neurologist appointments. Ask other group members questions about what to expect and suggestions on how to prepare. Update fellow group members on your progress... both on set backs (so that we can provide support, suggestions and hope!) and on successes (so that we can congratulate you and so that you can provide other group members with hope!).

Founded by marileew on September 27, 2009
196 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Cluster migraines

Hello,

I am new to this site but I thought I would share some of the stuff that has and hasn't been successful for me. I  am a 41 yr old women who gets cluster migraines. I know they are cluster migraines because I have been dignosed by 2 different neurologists and had MRIs and CAT scans done. I have tried various drugs to control migraines-not very successfully. As I also have Fibromyalgia and do not react in very predictable ways to medication.One medication that has made a difference to weather related migraines ,especially extreme cold, is Cymbalta. I am on this for the FIbromyalga (fibromyalgia) but a side benefit is help with migraine control.To be honest though what has helped the most are non-drug alternatives. Certain foods are a no,no. I have many food sensitivities such as gluten,cold meats, sugar, caffeine, bananas, pineapple, grapes,  and alcohol of any sort. Starting IMS ( intramuscular stimulation with a physiotherapist licensed to do this) , massage therepy and seeing an Osteopath. Also making sure I'm never dehydrated and that my blood sugar never drops too low.

I hope this can help someone.
6 Comments
Blank
875426_tn?1325532016
Thanks for sharing- did your MRI & CT scan reveal the abnormally shaped hypothalmus they mentioned on a tv special about those who suffer from cluster headaches?  

Likely re: cold meats the trigger is the preservative sodium nitrate or nitrite- at least it is for me.  Some companies are now being considerate enough to put out products w/out this type of trigger in them.  I had my first hot dog in years, for example, because Trader Joe's left it out of one kind & here, where I live they recently started carrying a hotdog at Walmart w/out it- Oscar Mayer Angus.  Butterball and Hormell have turkey sandwich meat product out there, I believe w/out that trigger in it.  
Blank
1626306_tn?1302487106
Hey thanks for the reply.

Everything on both scans were normal. Which is odd because Nothing about me is normal. :)  I really want a "do over"  lol

What kind of migraines do you get?
Blank
Avatar_f_tn
My husband has suffered with cluster headaches since he was a teenager and it runs in his family. The best results for him so far is oxygen therapy, and if he can get to the oxygen tanks as soon as he thinks one is beginning, the pain is averted. The other thing he has found helpful is Toridol by injection. He was on the low tyramine diet for a long time and didn't notice any difference, he does stay away from melted cheese and cheese in general.

Nitrates and Nitrites are a no no as well, they aren't good for anyone.
Blank
875426_tn?1325532016
k9helper- Maybe you could try putting in a call to the radiologist and ask them to take a second look, specifically to see if there is any abnormality in the hypothalamus, given your headache history, including cluster diagnosis by neurologists- they might just be willing to take a second look.  See private message for more info.

  I was diagnosed with common intractible migraines, though at times, I get an aura prior.

Liora- glad your husband has found things that help him.  Toradol for my migraines never worked well at all for me.
Blank
Avatar_f_tn
Thank you for your reply, they did examine the hypothalamus and it was normal. His clusters subsided for a while and he had daily chronic migraines for the last 2 years. Now, as of last week the clusters returned and we had oxygen delivered yesterday. Check out www.clusterbusters.com for some good recent research.

Toradol works with clusters only, doesn't touch the other types of migraines.
Blank
875426_tn?1325532016
You're welcome!  I wonder why a number of doctors seemed to have Toradol as their drug of choice to offer to people without cluster headaches?  I had a neuro doctor included in that number offer Toradol or nothing for a migraine in his office once.  
Blank
Recent Activity
681148_tn?1285160820
Blank
FurballsMom commented on photo
9 hrs ago
874521_tn?1375890587
Blank
opus88 commented on photo
9 hrs ago
681148_tn?1285160820
Blank
FurballsMom commented on photo
10 hrs ago
MedHelp Health Answers