A-Z Posted September 30, 2018 Share Posted September 30, 2018 Help, Help! Hi Cluster-Companions. I am male and 37. I am a Episodic-Cluster patient my last attack was 2 years ago (continued for a month). I want to ask those of you who are in remission that what side effects or impact had Cluster Headache on your body (head). I am asking this because sometimes I feel a very little palpitation on my right-side temple (my Cluster attack comes on right-side) without Cluster attack which makes me irritated and I feel bodily weak. Now, since last one day this came again. This time it is very disturbing, the feeling of palpitation (just a feeling) at the back of my right eye deep inside my brain, and with it a very weak body as if I have worked or exercised a lot. My mind feels helpless and tired, and I don’t want conversations with friends and family. I took pain killers but that didn’t worked. To others this explanation seems a psychological one but it is very physical as all of a sudden it comes. 1) Is this because of Cluster? 2) If it is related to Cluster then what medicine should I take? 3) Can you tell me that what are the side effects of Cluster when it is not around (not the side effects of psychology and medicine), or any related links? Reply Soon! Quote Link to comment Share on other sites More sharing options...
A-Z Posted September 30, 2018 Author Share Posted September 30, 2018 And, I forget to mention that my upper-right jaw hurts as well. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted September 30, 2018 Share Posted September 30, 2018 A-Z, Most of us get what's called shadows before our CH starts. A shadow can be lots of different things. We feel bad, but don't know why. We have a weird feeling in our head around where our CH hits, but it's not painful, just a weird or bad feeling. Others have light pain in the area of our CH. Others get jaw or neck pain just before or at the start of our CH coming back. What you describe sounds like a type of shadow. I'm sure others will chime in here with more info shortly. PFW (pain free wishes), J 1 Quote Link to comment Share on other sites More sharing options...
A-Z Posted September 30, 2018 Author Share Posted September 30, 2018 Thanks ThatHurtsMyHead for reply back! Thanks to introducing me with a new CH terminology: Shadow. As terms count a lot, you follow them and can find a diagnosis for it. Yes, it can be a shadow. Yesterday i took my pain as a small usual one but later i took Diclofenac Sodium / Misoprostol tablets and now feeling better. Paracetamol didn’t worked a bit. Also took a Red Bull drink but that too not worked. I will call my yesterday's pain CH-Migraine, as i searched a lot and came to this conclusion: the big CH attack didn’t came but that little one was there and i treated it like a Migraine (if big one came then it is CH-Shadow). If pain persists then from tomorrow i will start Rizatriptan. Just a share with Cluster-Companions: After hard lessons i came to know, as of now, that Beef is the trigger of my CH, so, in these past 2 years i haven’t took Beef. PFW to you too. Quote Link to comment Share on other sites More sharing options...
jon019 Posted September 30, 2018 Share Posted September 30, 2018 (edited) Hi A-Z..welcome! THMY is spot on...does sound like shadows...and there are all kinds of gradations... from annoyance to just below major hit level. Personally, I could deal with most levels below major hit and proceed with normal life if I knew, from experience, it wasn't going to proceed higher. Naproxen, energy drink, even aspirin sometimes worked for these....oddly OXYGEN, which I swear by, did not. I am unfamiliar/puzzled with Diclofenac Sodium / Misoprostol (even after googling)....but the Rizatriptan is kinda perfect....way too low and slow for a major hit but ideal for a shadow as long as you don't exceed dosage limits. More than a few folks have reported instances of CH without pain...another form where you get some or all of the symptoms....except without pain! It would be a strange sensation which I have not experienced.... I have battled depression most of my CH career...mostly in the past now....but always in between cluster episodes (was episodic for years). Seemed during cycle I was too busy dealing with it to get depressed. OUT of cycle there's lots of time to reflect and dread and anticipate "what's coming"....which is why>>> Do you have a headache specialist Doc? VERY important as most PCP's and even neuros have limited experience and knowledge of CH and other headache conditions. All things proceed from a diagnosis...have you been?...with what? Bear in mind, multiple headache types are completely possible. Are you familiar with Oxygen treatment? Saved my sanity if not my life! Have you considered the D3 regimen? Any prevent meds like verapamil? Abortives like Sumatriptan injections and Zomig nasal spray? Have heard of beef being a trigger for some...tho it is unusual. If you are in an area....or have travelled to where ticks are.... you should be checked for Lyme disease as it can create an allergy to red meat. Best Jon Edited September 30, 2018 by jon019 1 Quote Link to comment Share on other sites More sharing options...
A-Z Posted October 1, 2018 Author Share Posted October 1, 2018 Hi Jon. Yes, my CH is diagnosed/confirmed. My doctor prescribed me Diclofenac Sodium / Misoprostol along with Zolmitriptan when there is full CH attack, took both at once. It worked a little but i had no other options. Now i take Diclofenac Sodium / Misoprostol for headaches apart from CH. Me too mostly depressed. As i felt positive to SSRIs, took them for a few months 2 years back. Seems a clinically-depressed case But a physician Doc not a psychiatrist prescribed me SSRIs. SSRIs are good to certain point after that no! their side effects i didn’t like. Now thinking to take Magic Mushrooms to fix my mood and to stop Shadows. Nice to hear that there are cases of CH without pain. For me this seems very possible because you/me are normal but somehow you are physically down though your body tests are clear and you are depressed. This can be CH without pain or as THMY said earlier a Shadow. I was introduced to Verapamil after my last CH pain, however, i took them as a try and a preventive med. But very bad constipation problem and leave them. So, i didn’t know much about Verapamil effects. On Verapamil packet it is written Calcium-Channel blocker and Beef contains high amount of Calcium, it can be any connection between CH and Calcium?? No i have not tested myself for Lyme disease. Diclofenac Sodium / Misoprostol narrows nerves. In my expirence blood thinner things like Garlic make me down: mood and body. Want to know more from you good-people Boring life i am living. Quote Link to comment Share on other sites More sharing options...
A-Z Posted October 1, 2018 Author Share Posted October 1, 2018 And, no i have not done Oxygen treatment, and what is the D3 regimen? i will try to do a good D3 search......... . 1 Quote Link to comment Share on other sites More sharing options...
A-Z Posted October 1, 2018 Author Share Posted October 1, 2018 Ah! now got it. Yap! took vitamin d3. I think they can be the reason that i have no CH attack since past 2 years. Quote Link to comment Share on other sites More sharing options...
xxx Posted October 1, 2018 Share Posted October 1, 2018 Hey AZ, Even CHers who have been taking the entire anti-inflammatory regimen with 10,000 IU/day vitamin D3 and all the cofactors with a therapeutic 25(OH)D serum concentration around 80 ng/mL (me included) can experience "burn through" CH. The most common reason is an allergic reaction... An allergic reaction to CHers is like kryptonite to Superman. The first step if this is happening to you is to see your PCP/GP for the 25(OH)D lab test. If the results come back less than 70 ng/mL, I would increase the vitamin D3 dose. If the 25(OH)D lab test results come back greater than 80 ng/mL, an allergic reaction is the likely culprit. In that case, I start a week to 10-day course of Benadryl (Diphenhydramine HCL) at 25 mg every 4 hours throughout the day. Just be careful and not drive as this much Diphenhydramine will make you drowsy. If driving during the day is a must, I wait until I'm home for the day then take 50 mg of Benadryl as I walk through the door and another 50 mg at bed time. If the Benadryl (Diphenhydramine HCL) helps reduce the frequency of CH, I would start looking for the allergen causing the allergic reaction and reduce my exposure to it as much as possible. Pollen and mold spores at usually the problem. That said, many people are allergic to dust mite poo. It's everywhere around the bedroom, mattress, pillows, sheets, pillow cases and bed covers. New pillows and a dust mite proof hypoallergenic mattress cover can help if dust mites are the problem. I've also found Bio-Tech's D3-50 (50,000 IU water soluble vitamin D3 capsules) to be more effective in preventing CH than the liquid soft gel formulations. One 50,000 IU capsule every 5 days (An average of 10,000 IU/day) should be effective in preventing CH. Take care and please keep us posted. V/R, Batch 1 Quote Link to comment Share on other sites More sharing options...
jon019 Posted October 1, 2018 Share Posted October 1, 2018 Yo AZ Yes, my CH is diagnosed/confirmed. My doctor prescribed me Diclofenac Sodium / Misoprostol along with Zolmitriptan when there is full CH attack, took both at once. It worked a little but i had no other options. Now i take Diclofenac Sodium / Misoprostol for headaches apart from CH. Well...that's GOOD...ya know what you are dealing with. Why no OXYGEN is a puzzlement tho! At least a try. If Doc says no...or DOESN'T know...get another Doc. It is the first line, first choice, most medically accepted (for decades now) abortive that works near miracles for many. Easy to use, relatively cheap, fast, NO SIDE EFFECTS. Without O2 I would have feared for my sanity and perhaps my life. The first time you use and feel the hit drain away like water you will know... and regret any delay... See these links: http://www.clusterheadaches.com/O2/index.html https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ Re Zolmitriptin. Is it a tablet or the nasal spray? I had wonderful abortive results with the spray (5 mg)....5-8 min effectiveness....18 hr "free period"..99% effective for break throughs after O2, energy drinks, sometimes verapamil failed. Very expensive...just like Sumatriptan. I mighta paid ANYTHING at times tho...……… Me too mostly depressed. As i felt positive to SSRIs, took them for a few months 2 years back. Seems a clinically-depressed case But a physician Doc not a psychiatrist prescribed me SSRIs. SSRIs are good to certain point after that no! their side effects i didn’t like. Now thinking to take Magic Mushrooms to fix my mood and to stop Shadows. Interesting enough there are several antidepressants that have been used for preventive CH treatment. Not much success from what I gather. Amitriptyline was the one I tried...totally ineffective and life altering side effects (getting out of bed was my major accomplishment for the day) YMMV...…. Re MM...you are in EXACTLY the right place...check out the "Files" section. I have no personal experience with that method..... I was introduced to Verapamil after my last CH pain, however, i took them as a try and a preventive med. But very bad constipation problem and leave them. So, i didn’t know much about Verapamil effects What dosage? Did you do a prednisone or methylprednisolone taper first (to break the cycle while the verapamil kicks in...10-14 days). The reported "sweet spot' for clusterheads is 480 mg/dy in divided doses. I used (depending on cycle) 480-1040 mg dy of the immediate release type (the extended release version works for some but fewer than immediate release). Also known as "concrete dust" it definitely can cause constipation. I always made sure to drink LOTS of water and increase fiber intake (Metamucil works too) and did not have any problems...but we're all different... On Verapamil packet it is written Calcium-Channel blocker and Beef contains high amount of Calcium, it can be any connection between CH and Calcium?? Beef is actually relatively low in calcium (tho high in protein) compared to many foods like dairy, some leafy green veggies, soy products, nuts, seeds, beans, canned bone in fish, fortified cereals and juices, et al….see: https://www.healthline.com/nutrition/15-calcium-rich-foods Verapamil does not play well with calcium….should separate intake by several hours… No i have not tested myself for Lyme disease. Might want to think about that if you have other symptoms besides CH trigger after beef intake…or even just that as inflammation from an allergic reaction is DEFINITELY a Ch trigger… Diclofenac Sodium / Misoprostol narrows nerves. In my expirence blood thinner things like Garlic make me down: mood and body. Taking blood thinner myself for another purpose….have noticed no effect on CH or mood….would be interested in others experience. There have been reports of Coumadin being effective for CH for some…so go figure Want to know more from you good-people The D3 info from Batch above is PRICELESS….I’d go for it…. Boring life i am living. With CH…aint nothing boring… Best Jon 2 1 Quote Link to comment Share on other sites More sharing options...
A-Z Posted October 6, 2018 Author Share Posted October 6, 2018 (forum reply was giving error so thats why i am late) Hi Batch and Jon. You gave lots of information and asked a lot. Thanks for info.. but with time i will answer your questions, maybe now or later. Trying to answer your questions in mix: Zolmitriptan tabs not spray. Took D3 in 200,000 IU gel tab, 2 tabs in 2 weeks. Before that injection form, that time Doc told me. Now taking every 6 months gels. Cant offord tests. In my region CH is some how a new discovery, tell you people later from where i belong. Good to know about oxygen's cure of CH attacks , next time if CH came i will try it. HOPE IT WILL NOT COME! Thanks for informing about Beef calcium levels. Once again thanks a lot CH-Companions, if i had something to ask i will i ask...... sorry for being slow... if you have any info regarding Shadow (like me living in 50-50 position) then tell me, if you want or can... i will be great full. Batch, Batch and Jon, Jon ;) Quote Link to comment Share on other sites More sharing options...
A-Z Posted October 18, 2018 Author Share Posted October 18, 2018 Hi CH-Companions! Your views on Lithium Carbonate! Took Lithium Carbonate 400 mg tabs, one each night for 4 days, for my Shadow pain. Very bad experience, headache. Pain in forehead and both temples, sore throat and confusion. Not going to take it any more from today. Any suggestions in this regard? Thanks Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted October 18, 2018 Share Posted October 18, 2018 A-Z, My doc recommended Lithium many years ago. After reading the side effects I decided it wasn't worth it, when Oxygen works as good as it does. IMHO, I'd stay away from it also. J 1 1 Quote Link to comment Share on other sites More sharing options...
A-Z Posted October 18, 2018 Author Share Posted October 18, 2018 J ! Some people praise Lithium Carbonate so much on net, maybe their case is different or .... who knows. Well, Lithium works for some in Bipolar and Depression. But research also shows since past 10 years it is being used less and less. Thanks for replying soon, and kind words dear J . Quote Link to comment Share on other sites More sharing options...
A-Z Posted October 18, 2018 Author Share Posted October 18, 2018 How Lithium impacted you? any side effects? (When you took it). Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted October 19, 2018 Share Posted October 19, 2018 A-Z, Over the years there have been two people that joined the board that were either partially or completely blind from taking Lithium. I can only guess their doctor didn't monitor them correctly. J 1 Quote Link to comment Share on other sites More sharing options...
A-Z Posted October 20, 2018 Author Share Posted October 20, 2018 Thanks J for informing. Quote Link to comment Share on other sites More sharing options...
Siegfried Posted October 20, 2018 Share Posted October 20, 2018 Hi A-Z, If you consider triptans for your shadows (especially if they are long-lasting) you can have a look at the ones with a long half-life which are a better fit for this type of pain. The two in that category I am thinking of are Frovatriptan and Naratriptan. They also tend to have less side effects than the fast-acting ones. Just pay attention not to mix different triptans together. All the best ! siegfried 2 1 Quote Link to comment Share on other sites More sharing options...
HCH26 Posted October 20, 2018 Share Posted October 20, 2018 A-Z, I have taken lithium for over two years now, it helped me for over a year in preventing with little to no side effects. I thought I had found what worked for me. The side effects began with confusion and intense anxiety to the point of panic attacks. And eventually did nothing to prevent my current cycle. I have recently weened myself off of lithium and am hitting the D3 regimen hard. I plan on taking mm as well if after ten or fifteen days the regimen does not help me. In short, lithium may not be worth it when there are other healthier options with less side effects. PF wishes! Wes Helms 1 Quote Link to comment Share on other sites More sharing options...
A-Z Posted October 20, 2018 Author Share Posted October 20, 2018 Hi, Siegfried and Wes Helms. To Siegfried: Lot of thanks for useful information. To Wes Helms: Sad to hear about your Lithium story. I have not taken D3 during attacks but as a preventive med, however, in my experience D3 should be taken in less amount with gaps. Search in this regard about D3 dosage. See what suits you. Yes, i am too in planning for MMs, lets see what effect they have on my Shadows and mood. A-Z 1 Quote Link to comment Share on other sites More sharing options...
ubot-u2 Posted November 6, 2018 Share Posted November 6, 2018 I had this problem as well but in mine case, magic mushrooms have helped a lot! Micro-dosing cure mine! 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 7, 2018 Share Posted November 7, 2018 7 hours ago, ubot-u2 said: Micro-dosing cure mine! Can you be more specific about what your micro-dosing approach has been? 1 Quote Link to comment Share on other sites More sharing options...
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