Clusterheadaches.com Message Board


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

        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Just have to ask?
        
(Message started by: TracyS. on Aug 25^th, 2003, 10:46am)

Title: Just have to ask?
Post by TracyS. on Aug 25^th, 2003, 10:46am

Hey all well i've spent all summer in cycle tried tons of meds. not much luck as of yet. Although some meds. work better then others. I have a silly question but I wonder if anyone else has had this same thought. From reading I have found a allergey reaction is a trigger, I asked my Neuro. about it, she agrees so I asked about alleregies and treating CH that way. She says no, doesn't work. Well after a summer of many things that don't work, I have called my daugther's allergeist he has treated people who suffer from CH with success! Can anyone tell me if you have tried this road, or if it's just a bad idea? I suffer once a year all Summer, at least that's the way it's been for 2 yrs now! At this stage I'll try almost anything!

Title: Re: Just have to ask?
Post by Patrick_A on Aug 25^th, 2003, 11:15am

I would never say never! But the 1st 12 years of my CH was trying to convince my Dr's that it wasnt a sinus or allergy related problem, But thats exactly how it was treated unsuccessfully i might add!

Good luck on it, Might be ur ticket out!

PFDAN, Patrick

Title: Re: Just have to ask?
Post by Danish on Aug 25^th, 2003, 1:04pm

Hi there :)

Before I was properly diagnosed my doctor thought I had some kind of allergy too. From what I described with the teary eye and the running nose it was the only thing he could come up with and I was treated with allergy-pills. It didn't work at all... but it made me very sleepy at the end of an attack.

Have you tried oxygen? It works wonderful for me.

Title: Re: Just have to ask?
Post by TracyS. on Aug 25^th, 2003, 1:07pm

Yes I have heard and read about CH being mistreated as sinus problem. My Nuero. GP both agree it's CH. So what kind of treatment did they try? Mind you my nuero. says this road is a waste of time, she is right most likely! But her methods this summer have touched the headaches but boy I can't say I have had a PF day since the end of May! I'm still waiting! I have tried some form of many of the meds. that everyone here seems to take. I haven't had anything that has made them go away not even on steriods, for a month! I guess if I try this and it doesn't work at least I'll know right? Can't hurt can it, it's only money right!!

Title: Re: Just have to ask?
Post by floridian on Aug 25^th, 2003, 1:13pm

It's your call on this one - like you said, people try lots of things and most of them don't work. If you have noticeable allergies, this would be a good idea in general.

Most of what allergists do deals with classic immune mediated reactions. This covers pollen, mites, peanuts, shellfish, bee stings, etc.

In addition to allergies, there are intolerances and toxic reactions. Lactose intolerance is often described as an allergy by the public, but it is very different. If someone lacks the enzyme to break down lactose, it stays in the gut and bacteria feast on it, producing all kinds of problems. A real pain, but not an allergy. There are other sensitivities to dietary ingredients (sulfites, MSG, etc) and environmental factors (heavy metals, estrogen mimmics, etc) that fall outside the range of 'allergy'.

Title: Re: Just have to ask?
Post by TracyS. on Aug 25^th, 2003, 1:13pm

O2 haven't had the right chance to try it. My nuero is 82 miles away my Gp is 1/2 block. My GP doesn't have O2 in the office. So my nuero. set it up for me to go to the hospital as a on going paitent. However it means the first time I have to be seen as a ER paitent and the whole works. Then when I go in again I have to see a nurse then get the O2. If they are busy I have to wait until they have time to see me. I understand that but it makes it really hard to go and sit while I have a attack. So I haven't tried it. I have thought about calling my nuero. and asking for a home set up, she didn't do that to start becasue she wants to see if it works. Have thought about going to the fire station many times and asking if they would help me out. I have 4 attacks a day plus 1 at night so to go to the hospital just doesn't really work unless I want to live there. I think I will call my neuro. now and see if she will write the script. for O2 at home. Might just be best.

Title: Re: Just have to ask?
Post by TracyS. on Aug 25^th, 2003, 1:20pm

See that's just it I don't have the classic allergey problems. my daughter does, but not me. I don't react to food etc. I do get the awful face pain more on the up and down side of a cycle. To the point that I wish I could just peel my skin off or drill holes to release the pressure. But it's all one side, no drainage, I do get the stuffy nose on the headache side during attack, no eye drainage. Ahhh isn't life grand, how to cope with this mess. Hey thanks guys for your input, it's sounds like maybe this road is a waste of time, Nuero.'s I guess they do know something, sometimes anyway! Thanks for the help!

Title: Re: Just have to ask?
Post by Marcos618 on Aug 25^th, 2003, 1:34pm

I went 18 months with CH's everyday. Very unusual since mine in the past only lasted a few months. Then I went to a different doctor who wanted me to quit smoking. I did and the CH's went away. When I would bum a smoke from someone I got a CH that night. Then I noticed a pattern. Menthol cigs gave me the CH's, but non-menthol did not. Was the menthol the trigger or was I allergic?

Now I get Ch's every few years for a few month period. But the last two times my first CH was just after I laid on a beach in the sun in hot weather and the second was after I laid in the sun next to a pool in hot weather. Both times gave started a CH period. Again trigger or Allergic?

Title: Re: Just have to ask?
Post by Danish on Aug 25^th, 2003, 4:57pm

Hi again Tracy

I really think it would benefit you to talk to your neuro and show him some of the info available on the net. I know that statistics from my country show that 2 works well on 70 - 80% of all CH patients.
Here in Europe CH is also called Hortons headache after the guy who first described and diagnosed patients with clusters... He, Horton, suggested the O2 treatment to be very effective as far back as in the 1960's.

Verified info like this will convince any neurologist I'm sure! ;)

Title: mint oil
Post by floridian on Aug 25^th, 2003, 6:27pm

Quote:

Then I went to a different doctor who wanted me to quit smoking. I did and the CH's went away. When I would bum a smoke from someone I got a CH that night. Then I noticed a pattern. Menthol cigs gave me the CH's, but non-menthol did not. Was the menthol the trigger or was I allergic?

One study on clusters and the immune system showed that compared to migrainers and others, cluster heads have higher levels of IgE antibodies - this was attributed to smoking. The antibodies could definetely aggravate the body and push one over into headache land.

I find I can't handle much in the way of mint or wintergreen (from tea or breathmints) - it makes me very edgy to semi-paranoid. I can feel a particular part of my brain misfiring. I never really connected it to clusters (had only one since I noticed the mint effect a year ago, and I now avoid most mint). When burned with tobacco, mint probably creates a lot of strange menthol derrivatives not in mint tea or breath lozenges, plus extra tar. Also, the anaesthetic effect of menthol means that smoke is inhaled deeper, with more particulates and tar.

Either way, keep an eye on it and avoid it if you think its bad for you. Curious to see if this is more widespread, or just two isolated occurences.

Title: Re: Just have to ask?
Post by smfaison on Aug 25^th, 2003, 6:34pm

Probably 20 years ago my neuro at the time sent me to an allergist because they thought the elevated histamine levels meant that allergies were involved. The allergist didn't do anything for me. After about a year or so, the neuro said that that was not current thinking anymore.

Title: Dave Barry Might Say
Post by floridian on Aug 25^th, 2003, 6:36pm

Quote:

Now I get Ch's every few years for a few month period. But the last two times my first CH was just after I laid on a beach in the sun in hot weather and the second was after I laid in the sun next to a pool in hot weather. Both times gave started a CH period. Again trigger or Allergic?

After examining the evidence, the problem is clear. When you want to lay in the hot sun, make sure that you are far from the water. The diaphoretic properties of large nearby water bodies can trigger allergies known as immunosclerberly, which have long been fingered as a cause of cluster headaches.

On the serious side, maybe it triggers CH through:
1) Elevated body temperature
2) Ultraviolet light affecting immune system
3) light affecting pineal gland / circadian cycles
4) vitamin D being produced in your skin, leaking into the rest of you

Title: Re: Just have to ask?
Post by UnsolvedEquation on Aug 25^th, 2003, 9:40pm

Allergies may trigger an attack, but allergies are not causing CH. Clusterheads' brains are releasing a chemical ( Histamine ) and this is causing all of our pain ! So far, it's only treatable and not cureable...but since you want to spend the money, let us know how it turns out ! Goodluck :) ;D

Title: Re: Just have to ask?
Post by floridian on Aug 26^th, 2003, 8:54am

Quote:

Clusterheads' brains are releasing a chemical ( Histamine ) and this is causing all of our pain !

I wish it were that simple - if it were, antihistamines would be a great treatment. Histamine is definitely involved, but so are lots of other things. Antihistamines do help some people, but they are not a magic bullet.

While the occasional bump in histamine can trigger a cluster, daily injections of histamine may actually have a beneficial effect:

Quote:

Recenti Prog Med. 1997 Jul-Aug;88(7-8):321-4.

Serum beta-endorphin increase after intravenous histamine treatment of chronic daily headache.
Anselmi B, Tarquini R, Panconesi A, de Leonardis V, Perfetto F, Piluso A, Naldi E, Tarquini B.
Istituto di Clinica Medica IV, Cattedra di Medicina Interna I, Universita, Firenze.

Histamine is able to induce spontaneous-like headache attacks in migraine and cluster headache subjects. Therefore, it has been considered as a possible agent in the pathogenesis of headache. Histamine desensitization is used for the treatment of cluster and other chronic headaches like migrains with interparoxysmal headache. However, it is unknown whether desensitization plays a role in headache improvement. Since a disfunction of the opioid system has been considered responsible for idiopathic headache and since low beta-endorphin levels have been demonstrated in some idiopathic headaches, particularly in migraine with interparoxysmal headache, we planned this study to verify if histamine therapy is able to modify serum beta-endorphin concentrations. For this purpose, we studied 24 healthy control subjects and 36 patients suffering from migraine with interparoxysmal headache refractory to conventional therapies. Patients showed baseline serum beta-endorphin levels significantly lower than healthy control subjects and treatment with histamine for 15 days increased their beta-endorphin concentrations. We believe that histamine treatment can activate the opioid endogenous system. However, the therapeutic effect of histamine remains to be verified by evaluating the correlation between beta-endorphin levels and headache improvement.

Heat and histamine as triggers:

Quote:

A new cluster headache precipitant: increased body heat.
Blau JN, Engel HO.

Exercise, a hot bath, or elevated environmental temperature provoked cluster headaches, within 1 h, in 75 out of 200 patients. This new observation accords with recognised precipitants--alcohol, histamine, and gyceryl trinitrate--perhaps via generalised vasodilatation or hypothalamic activation.

Title: Re: Just have to ask?
Post by Bob P on Aug 26^th, 2003, 9:05am

Clusters are also known as histamine headaches. The Diamond clinic treats clusters with a histamine desensitivation treatment.

I received an e-mail from a sufferer the other day who claimed he stops his attacks with Clariton. It's now sold over the counter if you want to try it. Let us know if it does anything.

Title: Re: Just have to ask?
Post by TracyS. on Aug 26^th, 2003, 9:40am

Hi all thanks for all the info. It is interesting reading. I am going on Wed. the 27th. My husband and I agree it is a very long shot but we have had enough of the roller coaster, he as much as me! At least it will rule it out, I won't have to wonder about it. Mind you I undestand that if it were this easy hey non of us would be in this boat! I will try the Clariton today and see what happens. I am running low on imietrex and cafegot, maybe a just a change would help! thanks again I'll keep you all posted on what happens.

Title: Re: Just have to ask?
Post by ksmiggy on Aug 26^th, 2003, 10:17am

hi Tracy,
Anything is worth looking into, one thing i have learnt from here, is that we all respond differently to treatments, i too have gone down the allegy road, although have not found it be the main cause, have been chronic for years, occaisionally i have been treated for sinus/allergy, with minor success on some occaisions, none on others, i have cold like symptoms most summer, but you got to figure, is it cause or effect, i was told it could be a trigger , or a sympton. please let us know how the claritin goes, have also had success with menthol, but think that depends on whether you prefer hot or cold when under attack.

Title: Re: Just have to ask?
Post by floridian on Aug 26^th, 2003, 1:41pm

Quote:

Clusters are also known as histamine headaches.

The term 'histamine headache' goes back to the 1930's - it was given by Horton (of "Horton Headache" fame). This name has some value, but can be misleading.

A brief but interesting history of the disease is at: http://www.whonamedit.com/synd.cfm/1576.html - first known description of clusters in the 1600s in the Netherlands and England! Also, according to another source, Franz Kafka was a clusterhead - that seems to fit.