Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Husband is a new sufferer
        
(Message started by: colojd on Jul 29^th, 2004, 10:12am)

Title: Husband is a new sufferer
Post by colojd on Jul 29^th, 2004, 10:12am

Hello: I was happy to find this forum to discuss cluster headaches. My husband began suffering horrible headaches a year ago July. The doctors are still on the fence as to whether they are cluster or not. He has had an MRI and CAT all of which were normal. The headaches began out of the blue last July and were so severe he went to the ER. We moved to this area about 2 years ago July and some doctors are wondering if it is possibly some severe allergic response since it starts in July, went away with the first frost and he had no similar headaches over the fall, winter and early spring and as soon as July rolled around, he is suffering again.

One doctor told him that the cluster headaches were random and it was a coincidence that it occured again in July. He consulted an allergy doctor who feels there might be something to the seasonality of his headaches.

He went to the ER again this week because his headache was severe and nagging. He received some oxygen which didn't seem to do much and then they gave him a narcotic that he said did finally dull and then stop the pain, but around 10 PM it returned.

He is going to start an allergy medication regimine to see if this has any relief but wanted to know if there was anything such as a seasonal cluster headache or if it does indeed sound like some type of allergy response.

Any information will be appreciated and welcome.

Thanks again for your site.
Joyce

Title: Re: Husband is a new sufferer
Post by thomas on Jul 29^th, 2004, 10:31am

It would help a lot, if he could describe his location of pain, duration of attacks and frequency of attacks.

Title: Re: Husband is a new sufferer
Post by FZfan on Jul 29^th, 2004, 1:02pm

on 07/29/04 at 10:12:39, colojd wrote:

One doctor told him that the cluster headaches were random and it was a coincidence that it occured again in July.

Completely wrong. Stay away from this doctor.

As thomas said, more specific info would be useful. While you're waiting for an official diagnosis from your doctor, try taking the cluster quiz on the menu to the left and let us know what your result was.

If your husband does have clusters, and I really hope he doesn't, the most likely the reason oxygen didn't work for him in the ER is it usually isn't administered properly. For o2 to be effective at aborting an attack it MUST be delivered at a high flow rate. Read about o2 on the menu to the left for specific information.

Please keep us posted.

Title: Re: Husband is a new sufferer
Post by colojd on Jul 29^th, 2004, 2:23pm

Thank you both for your replies. I did go over the quiz this morning and will pass it along to him so he can confirm the answers.

His pain is mainly on the right side of his head - around the eye, sinus area, ear and a band that goes from about forehead to the upper part of his head. He has never been a person to have unusual headaches or migraines, so this has been difficult for him to cope with.

I am not sure of the flow rate of the oxygen he was given. I was in the room but didn't notice. They finally came in and gave him a drip of a narcotic and this eventually helped but it wore off later and about 10 or 10:30 PM the headache returned.

Last year before he got the first headache attack, he felt like he was getting a sinus infection and our regular doctor had him taking some nasal spray and allergy medications. Initially, we thought maybe he overdid it and dried himself out too much from all of the medications.

They think that maybe it could be some type of allergy response because it came on at around the same time this year as it did last year.

As far as I know, there have been no other family members (ie brothers/sisters) who have had these headaches.

That is about all I know for now. I did read to him the water therapy suggestion on this site and he began doing it as of this morning.

Title: Re: Husband is a new sufferer
Post by colojd on Jul 29^th, 2004, 2:31pm

Forgot to also note - he has been getting the headaches daily since last Saturday. Yesterday he felt OK and just had a bit of a dull headache during the day. He felt pretty good in the evening and went to bed early since these headaches have interrupted his sleep. Around 10 PM the headaches started and he took several over the counter pain relievers with little help. He pretty much sat up in a chair all night and only got a little sleep.

The first time he got his headache, it also happened at around 10 or 10:30 PM.

Since the first episode, he has seen a regular doctor, a neurologist and an allergist. He also had a sleep study done to check for apenea. He was found to have a mild form of apnea. The allergist recommended that he try eliminating some foods and he went on a strict elimination diet. I had also read that snoring can be related to a chronic sinus infection. As soon as he eliminate wheat from his diet, the snoring was reduced dramatically and he stopped doing the interrupted "snorting" type thing when you have the apnea.

He has really avoided any wheat products for a long time. He did eat some white bread on Saturday and he thought maybe that began the aggrevation again.

I hope I am answering your questions - I know that there are a lot of factors to look at.

Title: Re: Husband is a new sufferer
Post by thomas on Jul 29^th, 2004, 2:46pm

Have him read this

Nighttime hits?
Ch is a terrible condition and they hurt no matter what time of the day you get hit. Personally, the ones that kill me the most, are the ones that come while I am sleeping. Many people have had success avoiding the nighttime hits by using melatonin, which in the U.S. is available over the counter. The dosage varies from person to person, but most usually have success with anywhere from 6-9mg. Some have had luck with much lower doses as well; you may have to experiment with the dosage, in order to find the one that is best for you. As with any medication, check with your doctor before you start using it.
PFNAD to all.

Title: Re: Husband is a new sufferer
Post by floridian on Jul 29^th, 2004, 2:49pm

Don't know if your husband has clusters, but it is possible from your description.

My clusters are very related to the calendar and clock - always in late summer, starting in the early morning (6:00 am) and then becoming earlier until they occur throughout the night.

Apnea is probably a component of most people's cluster headaches - especially those who have most of their headaches start while sleeping. Clusters often happen during REM sleep, when the body becomes paralyzed and breathing can be very reduced. Oxygen deficit can trigger a cluster, while breathing pure oxygen can usually abort a headache.

Sinus infections and hayfever are so common that cluster headaches are often misdiagnosed as sinus problems at first. Sinus problems may also play some role in clusters, as it leads to inflammation of the nerves around the sinus. Treat these problems if present - it may help somewhat, but clusters are deeper than the sinuses and it probably won't be a permanent cure.

A dull headache in the day - we would call that a shadow. After a while with clusters, slight pain or pressure doesn't count as a headache - compared to screaming pain, it is just a bit of discomfort.

Narcotics help some people, but they are not a medicine of choice. It often takes a large dose to work, and that must be done day after day. For some, narcotics provide very little relief.

Title: Re: Husband is a new sufferer
Post by judyw on Jul 29^th, 2004, 4:53pm

143Hello, first I would like to say your husband is lucky to have such a good supporter...I hope he will join you in sharing with others here for support and information, too...Everyone has given good responses...the one thing I have to offer is for each of us CH manisfests itself in its own unique way...I am a long time suffer who is now chronic and have lots of experience with the different docs, ie, allergist, apnea, and sinus...Each now being diagnosed as a separate problem, aren't I lucky? I have found a listening GP has given me the most care in working to find what works for me...Not only does your husband need the right medicine, but the right dosage...Verapamil is also popular here...being episodic, the prednisone burst would probably be the quickest and best attempt at getting relief...also, where the melatonin dopes me, I find taking benedryl or dramamine at night to work better for lessening night hits and insuring a more solid sleep...pdan :)143

Title: Re: Husband is a new sufferer
Post by FZfan on Jul 29^th, 2004, 6:03pm

Judyw's right. Your support is probably at least as important as finding relief. Even if it seems you feel helpless, the effort to research and just being there and trying to understand is more helpful than you know.

I agree with Floridian. Sounds like clusters to me, especially if it's waking him from a sound sleep. I would say that if your husband describes the pain as the absolute worst pain he's ever felt in his life, and breathing pure high flow rate o2 at the onset of an attack aborts the pain, the odds are very good he has clusters. For this, I am sorry, but you have certainly come to the right place for help, support and information.

I can't stress highly enough the importance of trying the oxygen at 15 lpm with a non-rebreather mask as soon as possible. A good majority of us find good relief with this treatment. I have actually found oxygen to be the only thing I need during a cycle, but as judyw pointed out, the beast can manifest itself differently in each of us. At the very least, you will find that o2 may allow him to get by with less meds.

Good luck in your battles with the beast and may your hubby find relief soon. PF days are ahead. Keep reading as much as you can here.

Title: Re: Husband is a new sufferer
Post by E-Double on Jul 29^th, 2004, 8:15pm

Joyce,

You certainly have come to the right place!! Everyone here is amazing and this has been the finest base for information and support!!

#1 I hope it is allergies but if it is not you are in the right place :)

your story sounds so very much like mine it's scary.

Although I have had these (CH) for 9 years I never thought anything of it (wierdo I guess) until last year when a few of them began to hit during the day.

I have always suffered with bad allergies (undiagnosed at the time)I thought, and finally went to the doc re the headaches. HE thought they were "seasonal migraines" and that I should go to an immunologist/ allergist. Well they found that I am allergic to many a thing and that there may be a correlation.

I wound up on tons of meds for the allergies but still suffered from the headaches. They eventually subsided. I guess my cycle ended.

Come this year... I decided to be proactive regarding the allergies.

Well to make the long story short.
No allergies this year. I was able to take care of those. But... God damn headaches still came different and stronger than ever.

Finally got to a neuro and was properly diagnosed after many years and finally getting what feels to be the right treatment.

It takes time and if he does have CH he certainly has our support and so do you!!

Best to you and your husband!!

Eric

Title: Re: Husband is a new sufferer
Post by Giovanni on Jul 29^th, 2004, 9:00pm

Sure sounds like clusters to me. I agree with all of the above suggestions. I have had really good results with melatonin @9mg 1 hour before bedtime in the past. This might take a few days to start working properly. About 50% of us have some type of relief from melatonin.

Also, you need an appointment with a neuroligist who specializes in "Headaches" to avoid wrong diagnosis that a lot of these people have had. Most cluster heads have been to an average of 5 to 6 doctors before a proper diagnosis was given. This is wasted time and more suffering for your husband while he awaiting proper treatment. This condition is rare and a lot of doctors are totally unfamiliar with this disorder.

Keep us advised on how he doing.

Good luck,

John

Title: Re: Husband is a new sufferer
Post by Shannon on Jul 31^st, 2004, 11:59am

There isn't to much more that I can add that wasn't already said. I do applaud you for being such a support for your husband. Alot of non-sufferes some times find it hard to understand exactly what we go through. It is terrifying at times if you have to see an episode occur. I never really had a full understanding of what "Clusterheadaches" really meant. I knew I was diagnosed but never knew to much or had the most support until I found this site. I have been a sufferer for 4 years now but I have a remmison of 2 years. I had been getting mine every other November and they would last for a month but this year they hit me in July..I was very suprised but I have read alot that episodic sufferers seem to have theres in the summer months so that could explain why his come in July. I would suggest that you read everything you can on here, ask alot of questions, print out info for his doc's and it may seem like it takes long but there are treatments and help. From the advice on here I started taking verapamil as a preventative it's a low dose but it seems to be helping and as an abortive Maxalt and Imitrex nasal sprays have been the best for me! Good luck I wish you both the best..
Shannon

Title: Re: Husband is a new sufferer
Post by IndianaJohn on Jul 31^st, 2004, 8:40pm

My deepest sympathies for your husband and my sincere praise for your support for him. CH is a horrible, horrible condition. But, sadly, that's what it sounds like your husband is going through.

I have been dealing with my CH's for 12 years now and have been through the nedincal mill like your husband. Some thought allergies, others thought TMJ. It wasn't until I found a doc that specialized in headache therapy that I got a proper diagnosis.

What helped me alot at first was a 60mg prednisone taper (which made me so hungry all the time that I could eat a minivan), along with 240mg of verapamil and Imitrex nasal sprays to abort the HA's.

The best thing would be to find a good neuro or headache clinic that knows what CH is. There is alot of ignorance in our medical community regarding CH since it is so uncommon. To this day my own family doesn't understand what it is I am going through.

My cycles used to be directly time to the seasons too. Every september I could expect an attack. As my CH progresses sometimes the seasons change. Currently I am dealing with the HA's now but have had them in the middle of winter too. At least in the winter, I can go outside and let the cold numb my head! But seriously, keep looking for a doctor that will take your husbands condition seriously and know's what CH is. Having a doc that understands can make all the difference.

Incidentally, narcotics never did anything to rid me of the HA's. Have your Husband stay away from ALL alcohol. That's a big trigger for many of us. I've had relatives tell me "Got a headache have a beer!", if they only knew...Other triggers can be bright lights or loud noise. Radio static is one of my bigger ones. Be aware of what he's doing/eating/drinking before an attack. You might find something that could trigger a CH HA.

I've had ER's try to give me O2 as well but it was never a high enough flow rate.

Also be prepare to fight with your insurance company if you have one. The triptans, the meds we use to abort the HA are expensive, and they don't like to pay. Usually, there is a appeal process that can be gone through to get the meds your husband needs. I just went through one with my insurance and they have agredd to pay up. It takes the doctors help to make this appeal work though, so when you find a doctor that can treat your husband, ask them if they are willing to work the insurance company to get the meds. Most will with now problem. Some even employ people for that reason alone.

Lastly, educate yourself. There are many links to information that will help your husband and you. I know first hand that if I am suffering, my family suffers too. Check out the supporters corner, that may give you some great help and advice.

I have gained so much in the few weeks that I have been here it's amazing. Just knowing that there are others out there who are suffering like me has made an incredible difference in my life. I have never met anyone from this site in person, but already I feel a bond is formed. And for the alone I will be eternally grateful.

Thoughts and Prayers with you and your husband,

John

Title: Re: Husband is a new sufferer
Post by Kris_in_SJ on Jul 31^st, 2004, 8:56pm

Hi,

First, I'll say I agree with all of the above. Second, I'll say that you are a truly wonderful spouse and supporter. I would literally not have survived this syndrome so far, had it not been for my wonderful husband.

The first cycle I had went like this .... "Must be allergies ... Must be sinus infection ... Maybe you have shingles ... Maybe it's pre-menopausal migraines ... etc."

I have Episosic Cluster Headache Syndrome.

Maybe your husband does too. Read all you can. Take the quiz. Take the printed out link documents to your doc. Find someone who specializes in this horrible syndrome.

Most of all ... use the knowledge that's shared on this board, keep asking questions, and keep us informed.

Hugs and best wishes,

Kris

Title: Re: Husband is a new sufferer
Post by colojd on Aug 3^rd, 2004, 8:34pm

Thanks to all of you for your wonderful words of support and information.

Just today, my doctor made another trip to the doctor. This time to our regular Primary Care Physician. My husband feels that he knows about as much as the neurologist or allergist when it comes to the headaches and he agrees that it may be cluster headaches and he will treat them like that.

He has recommended that my husband get an oxygen tank and try the oxygen therapy so we are hoping this brings relief. He also got a renewal today of his prescription for Migranal (hope I spelled that right). That does give some relief but is a powerful drug.

He did get tested this winter for sleep apnea and was found to have a mild version of it. He has always been a heavy snorer and one who would stop breathing and do the snort type of thing when he began breathing again. I read on a health website that most heavy snoring can be attributed to a long time and chronic sinus infection, mostly linked to a food or other allergy. It did mention wheat (refined wheat) as a major culprit. For the heck of it we gave it a try and his snoring was reduced dramatically overnight.

He did get his first really bad episode about a week or so ago when he ate a Johnsonville brat on a regular hot dog bun - this brand of brat has lots of "stuff" in it - artifical coloring, MSG and so forth. So we initially thought that maybe the headache was related to eating this type of thing.

But the headaches have continued each night and tonight he was feeling OK and about an hour after dinner, he got a bad headache. Earlier than he has had for a long time.

I know how painful a really bad headache can be and can only imagine how bad his are, by watching him suffer.

I do appreciate all of the information. I am trying to get him to start the water theapy suggestion too. Anything to try to help!

Title: Re: Husband is a new sufferer
Post by Kris_in_SJ on Aug 3^rd, 2004, 9:10pm

Hopefully the O2 will work well for your husband. To a CH sufferer, a good abortive is as important as the air we breath.

I've also found that my GP is much more willing to listen and consider options than the specialists I've seen. He reads the articles I bring him and visits this site on occasion. Together, we've found a protocol that works well for me whenever a cycle hits.

Please encourage your hubby to talk to his doc about a preventative like Verapamil. It has greatly shortened and lessened the intensity of cycles for many of us. Prednisone in tapering amounts can also greatly relieve a bout until meds like Verapamil have time to kick in.

Your support probably means more than anything. Keep reading and learning ....

Hugs,

Kris