Curiosity about this fact. Help if you can please

[Subisu]

I am an episodic cluster headache sufferer and have been so for many years but thankfully with many years (usually 7-8 years) of relief in between the bouts. In 2005 I went to see a Professor in London who prescribed Imigran injections for the pain since NOTHING had worked thus far.At that stage the headache bout came to an end and I did not need to take the injections.However they returned in December 2007 and I have been suffering since.The injections are brilliant in stopping the headache but they knock me out for the rest of the day.As my headaches usually occur around 3-4 in the morning,I have been able to sleep it off but lately they have changed their pattern somewhat.I am now getting them around 7-8 in the morning and I used to get one every alternate day without fail.They now seem less"structured" and have been coming day after day for a period then returning back to every alternate day.I was recently told by a doctor that he detected high levels of metal toxicity in my body and believed that the clusters were being caused by the metal fillings in my mouth.I have had them removed but the headaches continue... My question is two-fold.Has anyone heard of this being the cause of clusters before?Is there any truth in that fact or do we still not have a clue what causes a bout?
Secondly- I have just over the past 2 days developed a tingling(slightly numb) feeling in my right cheek.My headaches are ALWAYS on the right side but this tingling/numbness is a new thing. I'm feeling a little freaked out by that- as if the pain of the headache isn't enough to deal with! Can anyone shed some light on this matter? I would be truly grateful.
Lastly, the same doctor told me that beta blockers are a brilliant and effective way of preventing clusters yet all the websites in the UK and USA do not mention this.I was wondering if he was accurate with this information? Any information on all this would be so appreciated. Thank-you

[Vanessa Lacuesta]

Hi,

I think what your physician is referring to when he mentioned beta blockers  is prophylactic therapy for headaches. Have you had your headache reclassified lately?

If this is a cluster headache, oxygen therapy may help. Maybe you can discuss this with your physician.

The new onset tingling sensation may be nerve related. For how long has this been there? Is this tingling persistent?

Keep us posted.

[Subisu]

Hi Vanessa,
Thanks for your response. The tingling is not persistent and seems today to be a bit better but still there slightly. It has been there for the past 3 days. I am trying( as I type this I'm on hold) to get an appointment with the doctor who originally gave me the supatriptan injections to see if the headaches need reclassification.I am pretty sure that they are clusters though. I am very interested in taking the beta blockers as a preventitive as oxygen altghough highly effective I understand,is not readily avaliable and therefor not practical.
I wondered if you had any thoughts on the fact that mercury toxicity caused from metal amalgams could be the cause of clusters? Thanks again for any advice and light you may be able to shed on this situation.
Subisu

[Vanessa Lacuesta]

Hi,

There are some very recent advances in the management of cluster headaches that seem to be refractory to medications. You may discuss with your physicians the advantages of neurostimulation
( hypothalamic stimulation) and occipital nerve stimulation. Both of these interventions are still undergoing further investigation although it seems that the results are promising.

Older literature mentioned lithium therapy for cluster headaches. Low testosterone levels have also been associated with chronic cluster headaches.

I hope this helps Subisu.

[Subisu]

Many thanks again for your comments. Have managed to secure an appointment with the doctor for Thursday and am going to try a course of beta blockers to see if that can help in the prevention of the headaches.
Will keep a close eye on things and keep you posted.
Take care and thanks.

[clusterhead]

Subisu,

Beta blockers are an accepted preventative treatment for CHs, but there are others with a better record of success. Consider visiting www.clusterheadaches.com for a whole range of possibilities that have worked for some people. Visitors may and view the results of a non-"scientific" survey of the largest number of CH sufferers ever surveyed. The results include a variety of preventive and abortive treatments tried by Which brings me to my second point: CH sufferers--and their success rates, which are typically pretty low. But the lesson is not that nothing works--it's that many things work for some CH sufferers, and few things work for many. So you may have to go through lots of meds before you find one (or a combination) that works for you to prevent your CHs.

But you said, "I am very interested in taking the beta blockers as a PREVENTIVE as oxygen although highly effective I understand, IS NOT READILY AVAILABLE and therefore not practical." (My emphasis.)

Two points: first, oxygen is used to abort ("kill") a CH, NOT to prevent a cluster from occurring.  The purpose of the beta blocker is to prevent, or at least reduce the intensity, frequency, or duration of a full-blown cluster. However, you would use oxygen to stop a single cluster headache once it has begun. You would continue using the oxygen whenever you began to feel a CH coming on until the episode was finished weeks or months later. I use both a beta blocker and a calcium channel blocker (verapamil has a relatively good success record in preventing CHs) every day, and oxygen only during a cycle of CHs.

Which brings me to the second point: Don't assume oxygen is NOT readily available. Clearly, it is not as convenient to use as popping a pill, but there are medical-grade oxygen suppliers in most industrialized countries, particularly in areas that are not sparsely populated. Some hospitals may refill oxygen tanks. While you MAY have some difficulty in obtaining oxygen in your particular circumstances, please don't simply assume that it will be.

If it seems like I am a big booster of oxygen, let me explain why. Since I began using oxygen to abort my CHs, I have never missed a day of work due to a cluster headache. I have never missed a family gathering. I have been able to lead an essentially normal life. Before oxygen, the only abortive that worked to control my CHs was prednisone, which frankly had really nasty side effects. The only reason I put up with prednisone at all was that the CHs were worse. While oxygen has a few dangers of its own (better not use it around a smoker), the dangers are among the least risky of all abortive treatments, and its effectiveness is among the best. And it's cheaper than most. So please at least reconsider it.

If your health care provider is not familiar with the use of oxygen to abort CHs, suggest s/he go to http://www.medifocushealth.com/NR019/index.php, from which the "Medifocus Guidebook on Cluster Headache" can be purchased at a nominal cost for download--or read online for free. The Guidebook is geared to knowledgeable lay persons as well as physicians. It is also updated once or twice a year to incorporate the latest research on CH. As a result it is the single most reliable and current source of medical information I have found on CH. The online version has links to the most current research on CH indexed by the National Center for Biotechnology Information at the U.S. National Library of Medicine (http://www.ncbi.nlm.nih.gov/). [Heck, you may want to read it yourself!]

The main message I want to leave you with: take as active a role in your treatment as possible because cluster headaches are still not well understood by the medical community, treatments (both preventive and abortive) have varying degrees of success--and side effects--and no one treatment works well for the vast majority of patients--yet. Understanding of CHs and available treatments are growing faster than many neurologists and most primary care physicians can keep up with. And don't just take my word about anything I have said about CH. I am not a physician. But I have lived with episodic CH for 20 years, read a ton, and seen the body of knowledge and treatments for cluster headaches change ever more rapidly. If you are not working with a health care provider who works with CH patients regularly or keeps up with the literature on CH, you must first educate yourself, THEN educate your provider and work on your treatment--together.

Enough soapbox. I truly hope that by now you are pain-free and that you stay that way for a long, long time! Best wishes.