mit12

I have found that having Clusters teaches us why they say Doctors are “practicing medicine”! Over the last 45+ years I have heard try this and tell me what it does far to many times.

I can take antihistamines for a couple of days only. If I keep taking them they I will get hits. FloNase is the worst it will set of hits after the first use.

I showed my doc the D3 protocol and he has testing my levels. I can not get my D levels up to where it needs to be because of my calcium levels have gotten to high. My doc has me holding steady with 4000 IU of D3 a day.

My story about triptans goes like this. My doctor gave me a prescription for imatrex back when it first came out I used it a few times and had no success at all as a mater of fact it made the headache worse. Next was Zomig ZMT and Nasal spray these worked and my insurance was covering 72 for 3 a month supily plus my doctor would give me hand fulls of samples every month. When I found this site I was using all 72 of the zomig that my insurance was giving me and most of the ones my doctor gave me also. I was having hits almost daily and was ready to end it all. The great people on this site turned me on to trying MM which was against my way of thinking but it was a last ditch effort. Well thank god the busting, O2, D3 program and getting off of triptans saved me. Now I only use triptans while on vacation as a last resort so that my condition does not ruin my wife’s vacation also. If I had to use triptans when I get home I get off of the triptans cold turkey. So to summarize before triptans I was getting 3 or 4 headaches a month when triptans reached 72 plus doses in 3 months I was at almost every day like clock work 3:00 pm hit driving home with one eye shut and sitting in a dark room rocking back and forth until sometime late in the night or early morning. My migraines never stopped and I was getting CH attacks occasionally until I started using Nurtec every other day. This has stopped the migraines almost 100% and I have not had one CH since starting this treatment. I am a little different than most as I have never had a CH without having migraines for multiple days in a row. Now that Nurtec has stopped the migraines the beast has been dormant. I hope that telling my story can help someone from going down the rabbit hole that I went down. This story has a happy ending but it was so close to ending in the worst place imaginable. Thanks guys!

I have never had a massage set off a CH attack but they almost always set off a migraine within 24 hours.

Annett, triptans are both a blessing and a curse, they work great but cause rebound headaches. I would suggest trying to figure out something else to controll the headaches and only use triptans for emergencies. I know this is easier said than done, I have been suffering with these for the last 40 plus years.

A little bit about my situation with Clusters and Migraines. I have a very unique situation in that I have never had a cluster without not first having a migraines for multiple days in a row. Through busting I got the Clusters to calm down a bunch but the migraines seemed to keep coming back. I have always felt that if I could get controll of my migraines my Clusters would stop. Well on January 5th my doc had me try Nurtec taking 1 every other day. They seemed to calm down my migraines from 3 to 5 a week on the average sometimes more down to about 1 every 7 to 10 days through January. February is down to 1 every other week. The greatest thing is I have been 100% cluster free since started Nurtec. I hope that this continues to work as in the past everything that has worked stopped over time. last thing is insurance. This stuff is ridiculously expensive. When I went to the pharmacy with the prescription my insurance would only give me 16 for a three month supply wih. $20 co-pay. I called my Insurance and told them that my doctor wants me to take one every other day and the 3 month supply was not enough. They told me that if doctor wrote the prescription to say 1 tab every other day they would cover it as a preventative medication not an abortive medication with a $90 co-pay

I know when my cycle is over when it switches sides for the last hit. It is way more intense and last longer.

When you say salt for migraines, what is the protocol? I get cravings when I get migraines, they are salty foods chips, pretzels. Cheese is another and chocolate to name a few. All these make the headache worse once the headache starts so I am curious about how this works.

These Clusters are a weird animal, what works for some don’t work for others. For example, Immitrex does not work for me as a matter of fact it makes the hit worse. Zomig nasal spray is by the best abortive med I have ever used. The problem is it gives me rebound headaches. Next best is Zomig ZMT. Maxalt MLT only works some of the time. The key is taking these as soon as you get any sign of a hit. I have talked about the rabbit hole that triptans lead me into, at one time I was going through 72 Zomig in 3 months getting hits 3 to 5 days a week. Things just kept getting worse with the triptans. I was at the end of my rope when I found this site and you guys saved my life. Now days I only use triptans when on vacation so that I do not ruin the trip for my wife. After the vacation I have to quit triptans cold turkey and take the hits until they stop. O2 helps. If it works for you use it, just keep in mind that it may make things way worse. Keep notes. Sorry for the run on reply.

Flying is bad but I find that flights with layovers are the worst, I almost always ends up getting hits. For me its zomig. I try not to use triptans except for vacations this is the only way I have found to keep from ruining trips and vacations for my wife. I hate this condition we have been lucky enough to be born with! Can’t win the lottery but sure as hell can win a condition that only effects .01% of the population!

Another 3 weeks and it seems like I get 1 migraine every 2 weeks or so. Completely CH free since I started Nurtec. I have always thought that if I could get controll of the migraines the clusters would stop. I sure hope this continues.

The title of the original post is glasses to treat CH.

I don’t know about different color glasses but my doc told me to get polarized sun glasses way back in the 90s.

It’s funny how Doctors try and point to concussions and head trauma when trying to figure out either migraines or Clusters. I have had 13 concussions that I know of during my racing career. The doctors always try to connect the two. The problem is my migraines started before I got my first concussion and they have not changed in frequency, duration or intensity from the concussions.

Merry Christmas to all hope you have a great one!

Update time, Another week headache free!

Been there Great cartoon. Merry Christmas!

Well one more week added to the no headache list. I hope it keeps going.

Juss, I am going to be 60 in April and have suffered with migraines from my early teens on. The list of meds that have been tried to help control the headaches is amazing. With each new wonder drug there is a new hope that the 45 plus years of suffering will come to an end. It was not until my early 20s that the clusters started. I was misdiagnosed for years as just migraines. When I finally started getting treated for clusters I finally got some relief. What I have learned along the way is nothing seems to work for long. I try to stay positive and not get depressed but this roller coaster ride we call life is hard to keep a smile on your face. I would like to thank everyone of you for your support and encouraging words. Until the next up date hope you all have happy holidays.

Well last night had a pretty bad migraine. It is a little depressing but like every thing else we deal with I need to look at the positive. 1 migraine in a month is way better than at least 3 per week!

MM did not seem to make a big difference with my migraines but RC seeds seemed to help some. They took me from 5 to 7 days to 1 to 3 a week. This lasted for a couple of years until they stopped having good results. I was back up to 3 to 5 days a week. I am on Nurtec 1 every other day and have been headache free now for a little over 3 weeks.

An update, Well insurance is weird, doc prescribed 16 for a month 1 every other day. Insurance only pays for 8 a month! I called the insurance and told them that Nurtec does not work well for me as an abortive but it seems to be doing great as a preventative medication taking it every other day. Well guess what, they cover every other day if I get a 3 month supply???? (So guys call your insurance and ask questions it can’t hurt) So I am getting 48 tabs for $90. I have been taking it for almost 1 month now and I have been migraine free and no Clusters so far. I am hoping that It keeps the migraines in check because like I have said before I have never had a Cluster without having a migraine first. I will keep the updates coming.

Spiny, you nailed it with “what works for you”. My go to is 3 advill PMs taken coffee or energy drink. Don’t have a clue as to why this combo helps but it does for me.

I am trying Nurtec because I have Migraines at least 3 times a week. I believe that my situation is a little different than most CH suffers as I have never had a CH without having a migraine first. My doctor described my situation as a migraine headaches with cluster events. I always said that I believe if I can get controll of my migraines I can be CH free. I will be contacting my Insurance on Monday to see if they cover Nurtec. If my insurance covers it I will keep you guys informed with my results.