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   new here, and have some questions
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   Author  Topic: new here, and have some questions  (Read 716 times)
Radha
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new here, and have some questions
« on: Feb 20th, 2006, 12:54am »
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hi i am new here, and get bad cluster headaches just from eating anything, even small amounts of food, i have low blood volume and POTS and lyme too, anyway i wanted to know how often it is safe and ok to take imitrex and maxalt without suffering from any addiction or rebound headaches, i cant take alot of the preventive meds coz i have low bp, any input would be appreciated, and does the oxygen mask have to have that bag hanging from it, coz my mask doesnt have that bag, and anyone else here get the headaches just rom eating alittle bit of food, and have low blood voume, anyone have any explanations as to why this could be causing the headaches?? any input would be greatly appreciated, thanks and i am 28 female,
radha
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Jasmyn
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Re: new here, and have some questions
« Reply #1 on: Feb 20th, 2006, 5:06am »
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Welcome Radha.
 
There is a huge amount of information available here from people and by reading the left hand side of the board.  Go to the oxygen info on the left.
 
I also suffer from low blood pressure and eating in an episode just seem to aggravate the hits.  I'll recommend that you drink a lot of water.
 
Use the imitrex tip on the left, you will use less imitrex but it has the same effect with less nausea and dizziness.  It will allow you to get up to 3 imitrex shots from one injector.
 
You'll have to eat something if you take CH meds as they all may cause your bp to lower even more.  I use Verapamil as a preventative and I'm constantly exhausted and dizzy because of my already low bp but it works for the CH and I prefer to be a bit nauseous and dizzy than to get hit.
 
Here is a link on low bp and low blood volume, there are many more on the web if you google search:
http://www.50plushealth.co.uk/index.cfm?Articleid=1452
 
As far as I know Maxalt and imitrex is not addictive but imitrex can give rebound headaches.  
 
Wishing you pain free times.
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Re: new here, and have some questions
« Reply #2 on: Feb 20th, 2006, 8:54am »
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Hi Radha, as for the oxygen mask, yes it needs to have a bag. That's the rebreather mask that you keep reading about here
 
The best one can be purchased at:
 
http://www.clustermasx.com
 
PF wishes.
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Richr8
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Re: new here, and have some questions
« Reply #3 on: Feb 20th, 2006, 10:16am »
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on Feb 20th, 2006, 12:54am, Radha wrote:
imitrex and maxalt without suffering from any addiction or rebound headaches

I started rebounds on Imitrex with just one or two doses a day.  Experiences vary and I'm sure others will chime in.
 
on Feb 20th, 2006, 12:54am, Radha wrote:
and does the oxygen mask have to have that bag hanging from it

Not a must, but certainly more effective as you breathe in pure O2 with each breath. Read the O2 info on the left and seriously consider purchasing a cluster mask as suggested.
 
Wishing you PFDAN,
 
Rich
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pf wishes,

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Re: new here, and have some questions
« Reply #4 on: Feb 20th, 2006, 12:16pm »
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Have never seen medical literature which reported any relationship with food intake.  
 
Do not take this article as a prediction! Side effects are impossible to predict (assuming using normal doses).
 
: Headache. 2004 Jul;44(7):713-8.  Related Articles, Links  
 
   
Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.
 
Rossi P, Lorenzo GD, Formisano R, Buzzi MG.
 
Objectives.-To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature. Background.-Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial. Methods.-Six CH sum-naive patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described. Results.-All six patients had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. In all patients, the CH returned to its usual frequency within a few days after SQ sum was withdrawn or replaced with other drugs. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache. Conclusions.-Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.
 
PMID: 15209695 [PubMed - in process]  
---------------------------
One way to reduce the risk and costs:
 
Headache. 2005 Sep;45(Cool:1069-72.  
 
Treatment of Cluster Headache Attacks With Less Than 6 mg Subcutaneous Sumatriptan.
 
Gregor N, Schlesiger C, Akova-Ozturk E, Kraemer C, Husstedt IW, Evers S.
 
Background.-Subcutaneous (SQ) sumatriptan 6 mg is effective in the treatment of acute cluster headache attacks. However, patients sometimes benefit from a dose less than 6 mg. Objective.-Therefore, we designed a prospective open study to evaluate how many patients benefit from a dose less than 6 mg SQ sumatriptan. Methods.-We enrolled 81 consecutive patients with cluster headache and recorded their use of SQ sumatriptan and oxygen. Patients regularly using SQ sumatriptan 6 mg were advised to treat attacks with doses less than 6 mg and with oxygen. Efficacy and side effects of the different treatment options (6 mg, 3 mg, 2 mg, and oxygen) were evaluated. Results.-As a result, 74% of the patients using SQ sumatriptan 3 mg showed efficacy and 89% reported efficacy after 2 mg. Seventy-nine percent reported side effects after the use of SQ sumatriptan 6 mg (29% severe side effects). After the use of 2 mg SQ sumatriptan, only 50% of the patients reported side effects, none of these were classified as severe. Patients' preference was 41% for 6 mg sumatriptan, 28% for doses less than 6 mg, and 31% for oxygen. Conclusions.-We conclude that sumatriptan in doses less than 6 mg can be effective in the acute treatment of cluster headache attacks. We suggest that patients should have experience in their individual efficacy of sumatriptan doses less than 6 mg. (Headache 2005;45:1069-1072).
 
PMID: 16109122  
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Radha
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Re: new here, and have some questions
« Reply #5 on: Feb 20th, 2006, 11:37pm »
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i already take beta blockers to help the palpitations, especially from eating, so i cant take calcium blockers too, and i only use the imitrex spray, so i dont know how i could use that more than once, i use the oxygen for many reasons, not just headaches, i use it when i get lightheaded, brain fog, get tachycardia, it helps me for alot of purposes, but the mask i have doesnt have a bag on it, but it covers my face, and has holes on both sides, so is the bag still necessary? the company that supplies the tanks gave me this mask.  i also get bad pain in my neck on the same side as the headache, in area of carotid artery, is this anything to be worried about? can anyone explain why ingesting food would cause such terrible pain, is it coz of changes in blood flow, or in my case not enough blood? eating is a nightmare and i am always hungry because i can only eat so so little, i dont eat dairy, wheat, alcohol, fat, but still food gives me so much trouble, anyway, thanks so so much for all your replies, and i appreciate any help you can offer, are there any preventives that wouldnt lower bp and interfere with my beta blockers? thanks
again  
radha
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Beastfodder
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Re: new here, and have some questions
« Reply #6 on: Feb 21st, 2006, 7:55am »
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Hi Radha
 
As far as the O2 goes you've not got a non-rebreather system from what you describe.  The mask you were given does not allow you to breathe just pure O2 and at the high volume of gas needed they're pretty wasteful too.
 
Clustermasx is good for me - and you should be able to get hold of one.(www.clustermasx.com).
 
As for the rest I'm not a doctor, just someone who used to get episodic CH every Autumn for the past 8/9 years.  In terms of the traditional meds none I tried worked too well, but there's quite a few I didn't.  Maxalt Melts being a good example, caught some but also went to kip 10 for the first time after taking a Maxalt.  
 
Now I find sticking with O2 and clusterbusters(www.clustyerbusters.com) gives real quality of life with no nasty hangovers or side effects.
 
Good luck to you
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Re: new here, and have some questions
« Reply #7 on: Feb 21st, 2006, 9:28am »
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Hi, Radha. I'm so sorry to hear about your struggles. I received the same mask when I picked up my first set of 02 tanks. It did not work and from the info at this site, I purchased the CLustermasx and what a difference! I recommend it!
 
As for the food problem, I've never experienced HA's during food ingestion. Keep searching the internet and pushing your doctors. Some foods trigger HA's, but usually after digestion. Have you tried an Internist or Pain Management Center? Don't give up!
 
Wishing you all PFDAN's!
Suziq
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Dragnlance
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Re: new here, and have some questions
« Reply #8 on: Feb 21st, 2006, 9:49am »
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Hi Redha
 
Glad you found us, but it sorrows me as well. You have found a group of people who truely understand your pain, as we have it too.
 
The food thing to look at. Typical trigger foods are Nuts, (peanut butter is my fav food, but triggers me)
Smoked or cured meats and cheese, alcohol, aged cheese like sharp cheddar. Some people have issues with yeast in bread or beer.  
There are a few others, but this is a good start for the list.  
I hope this helps, at least a little
 
Dragnlance
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Radha
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Re: new here, and have some questions
« Reply #9 on: Feb 21st, 2006, 11:34pm »
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i cant thank you all enough for taking the time to reply, i will try to get a rebreather mask, and it doesnt matter what i eat, i dont eat any of the foods you mentioned, and the stabbing pain on the left side doesnt come EVERYTIME i eat, but most of the time, and only with a little bit of food, not a full stomach!! does anyone have the carotid artery pain with the headaches? and does anyone know how often a week it is ok to take the imitrex or maxalt? without getting rebounding effect or addicted? thanks so much  
radha
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Richr8
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Re: new here, and have some questions
« Reply #10 on: Feb 22nd, 2006, 12:41pm »
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on Feb 21st, 2006, 11:34pm, Radha wrote:
does anyone have the carotid artery pain with the headaches?

Neck pain is pretty common, however, never heard it described in this way.  Mine is generally lower more involving the splenius capitus, upper rhomboid, and trapezuius muscles:
http://www.deeptissue.com/learn/shoulder/traps.htm
 
and can be excruciating after several attacks.
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pf wishes,

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"Med free"- A few seeds and lots of O2-LG but not great.
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